Migraine and Emergency Room – ER

CLICK TO RATE 
SSSSS

Home Forums General Forum Discussions Migraine and Emergency Room – ER

  • Author
    Posts
  • #40252
    Avatar Image
    Editorial Team
    Participant

    Welcome to the Migraine and Emergency Room – ER Forum

  • #40851
    Avatar Image
    Elaine Gross
    Participant

    I almost went yesterday. Migraine was horrible and unrelenting. I was crying and writhing in pain. But I kept thinking of sitting in the waiting room in those hard chairs and with those bright lights for God knows how long and the thought was intolerable. I thought it should last four hours. If I could bear this horror for four hours. So I did. I cried. I moaned. Finally it subsided. To add insult to injury I had two subsequent migraines later in the night that woke me. Thank goodness they didn’t last too long. But what a horrible night. Today I’ve done nothing. I’m exhausted. Having a few minor migraines compared to yesterday. My eyes are red and swollen and I’m exhausted.

  • #40852
    Avatar Image
    Ellen
    Participant

    I’m so sorry Elaine and scrapbookcindy. Going to the ER is so stressful for so many of us. Many doctors just don’t really know what to do with us and just wish to get us out of their emergency departments. Sometimes it is helpful to have your doctor write you a prescription for whatever protocol they want given to you. When you have to make that trip to the ER, give them the prescription. Most doctors will follow it if it is reasonable. Some don’t and seem to just make it their life’s work to make us as miserable as possible. Don’t get discouraged. Keep working toward eliminating triggers, getting good preventative therapy and a better abortive(s) to help you.

    I’ve been a year and 5 months since my last ER visit. It took making some radical changes in my meds etc, and I may end up paying a price later, but for now, I am surviving and not needing hospital visits or stays. *crosses fingers*

  • #40853
    Avatar Image
    Alasandra
    Participant

    I started having to go to the ER for my migraines almost 8 yrs ago. At the beginning I didn’t realize that what I had were migraines. One of the ER Dr.’s asked if I had ever seen a neurologist and then referred me to an ex-colleague of his. That referral was the best turn of events for me! Unfortunately we have found that the only real sure way to break my pain cycle is an ER visit to get my ‘cocktail’ of medications. I have used the same ER since the beginning of my attacks and have come to know the rotating Dr.’s very well. It’s almost like walking into Cheer’s, they all know my name. I started out going 3-4 times a year. Now I am there about 4-5 times a month. I feel like a human pin cushion! But it is comforting to know that the ER staff knows my whole history of Migraines and treats me as a person and a patient and not like a drug seeking liar.

  • #40854
    Avatar Image
    Teri-Robert
    Participant

    Alasandra,
    Are you and your neurologist working on Migraine prevention? How long have you been seeing him or her? I’m glad you get good care in the ER, but I know how hard it is to have to go to the ER with a Migraine.

    Teri

  • #40855
    Avatar Image
    melissadwyer13
    Participant

    Alasandra…

    I too go just about that much.. in the past two years it’s actually been way more than that.. I have the same experience all the nurses and doctors know me.. except unfortunately they all decided to stop treating me…I DO have a great specialist but now I’ve been diagnosed with a nasty stomach disorder so my oral meds don’t work for pain or vomiting.. so sometimes I have no choice but to go to the ER…. it just sucks. I’m soo glad you have good results!

  • #40856
    Avatar Image
    Deborah
    Participant

    The ER is the last place I go as it depends on what dr. is working on how they treat my migraine. There are some that look at me as I am a drug seeker, and others that totally understand where I am coming from. When I explain that my headache specialist is out of town, boy am I frowned on. Treatment options are not always easy but if you can have your dr. give you something for pain it does help. My dr. does give me something for pain which I use sparingly. I have had to go to the er 3X’s since January, from every other week. I still have the daily migraines, but I stay at a 6-7 pain. I was staying at a 9-10 daily and I thought I was going to lose my mind. I am so grateful my dr. heard me and helped me with the pain.

  • #40857
    Avatar Image
    wendyrae
    Participant

    I’ve always been hesitant to go to the ER – I have nothing to “show” them. I always have figured it’s easier to lay in bed waiting it out and ‘wishing for death’ than suffering the humiliation of doctors that don’t “get it”. However, I’ve started having an escalation in my headaches/migraines that my GP really thought warranted a trip to the ER. I’ll talk to my Neurologist about it next week. For those of you that do go to the ER – what do they do for you?

  • #40858
    Avatar Image
    Michele
    Participant

    I had Botox injections 6 weeks ago, and the past 5 weeks have been a special little slice of a dark hot place. My migraines are much better, no icepick, throbbing pains. However, I’ve had a 5 week never ending, untouched by medication, headache above my eyes in the forehead region. My Neuro told me to go see my primary care Dr for a sinus problem. Its not sinus related, but I’ll play that game. On the day of my Dr’s appointment, he called in sick and his office never called me to let me know. My frustration level at that point jacked me up so badly, it escalated the headache to migraine proportions. I finally gave up at 3 am and went to the ER. Luckily my medical group sees only members, so I got right into a room, nurse had me disrobe and I’m thinking, finally someone will listen to me. The ER Doctor came in, listened to me for 2 minutes, never came closer than 3 feet, walked out saying he was ordering meds. He ordered Compazine and benadryl. The last time I was given these medications, I ended up having a double dose of benadryl due to the side effects of feeling like I was going to come out of my skin and borderline panic attack. I grit my teeth, play the game and lay there for an hour twitching, tears running down my face. Nurse comes in, asks my pain level. Its still at an 8. Doctor orders toradol and Pepcid. Another hour, and Dr comes in and asks me what my pain level was, I tell him 7. He says I’ll give you a little bit of dilaudid and discharging you. You need to see your primary care doctor to get your pain under control. The last time I was in the ER for a shot for my migraines was 9 months ago, this is not a frequent thing for me. My first thought was.. arent I supposed to come here for help to get my pain under control if I’m unable to at home? The Dr orders for me .5 mg of dilaudid.. when I get a migraine shot, I start with 2 mg’s of dilaudid and usually end up with 3 mg’s before I feel relief.

    After all this, as the nurse comes in to discharge me, I’m still in tears 3 hours after I walked in. She asks me if I would like to see another physician as the one who treated me has gone home for the day. I tell the nurse I dont care, sure why not. She comes back 5 minutes later and says her Manager told her I was discharged and needed to leave.

    As I’m waiting in the lobby for my husband to come check me out, I go to wait in my car as its quiet and I can get my sunglasses the nurse comes out and asks me where I am going. When I reply that I’m waiting for my husband, she threatens me with calling the local Police Department if I drive off.

    I sit here in tears still, trying to get myself under control after filing a formal complaint with hospital administration. Not that it will do any good for me today, but perhaps it will help the next migraineur if they end up in the same hospital.

  • #40859
    Avatar Image
    heather
    Participant

    I am in agreement that the local ER’s see you as a “druggie” looking for her/his fix. I have drugs!! I try not to but sometimes you have to take them. I don’t need their drugs!! If I go to the ER I need help, not a look of disgust from the physician. I do love the survey one of my local ER’s has. It is computerized and they bring it to you before discharging you. HAHA Shouldn’t give that to me after treating me like that. However, thank you on the tip about the prescription for the ER. Never thought of that before.

  • #40860
    Avatar Image
    Teri-Robert
    Participant

    Michelle,

    I strongly suggest talking with your neuro who treats you for Migraine and letting him know about how problematic the ER is. Ask him about rescue medications that you can take at home when your regular meds don’t work. Ask him what you’re supposed to do in an after-hours or weekend situation when you need help and the ER is obviously not a solution.

    I haven’t gone to the ER for a Migraine in at least five years because my Migraine specialist recognized that it’s not a good place for a Migraineur to be treated. My ER has alwyas been great in treating me, but my doctor feels it’s potentially dangerous for me to sit in the waiting room for hours, which could happen if they have a big trauma or emergency room.

    If your doctor can’t or won’t help with this, it’s time for a new doctor. Take a look at http://migraine.com/blog/is-it-time-for-a-new-migraine-doctor/

  • #40861
    Avatar Image
    wrensong
    Participant

    I was at the ER last night and found the staff quite supportive and understanding in terms of getting me into a dark room and keeping the lights low when examining me etc. The resident on shift did say “we’ve come to the end of what we can offer you here at the ER, which is a bit of a bummer for you really”. Seriously, he did. I actually started laughing at that because it seemed so inappropriate and lacking in empathy. He said he’d send me home with some T3′s, I told him I was already on a Butrans 5 patch and really not interested in narcotics. That caught his attention. He said that if they don’t respond to narcotics then it must be a ‘true’ migraine. I wasn’t sure if that’s an actual name or category or if he just mean ‘real migraine’.I said I was after some kind of basile constriction because that would be the only thing to provide relief. As soon as i reassured him that my blood pressure doesn’t elevate on them, he ordered it right away. I was able to walk out three hours later. Unfortunately, my migraine is coming back less than 12 hours later.

  • #40862
    Avatar Image
    Ellen
    Participant

    WRENSONG,

    I’m afraid your experience isn’t uncommon. the fact is, most ER physicians don’t really know what to do to treat Migraine attacks. They often assume that if they can get you some pain relief that you’ll go away and not come back. In reality they should be looking for ways to abort the attack. T3′s are one of the worst thing I can think of by the time you’re in the ER. What did they end up offering you for your attack? How are you doing today??

  • #40863
    Avatar Image
    Cher
    Participant

    Hello,
    we are new here. My wife suffers from chronic migraines. My Wife has had these since 2003. She would only go to the ER when she would really need too. We had been going to the local ER when there was nothing left for her to do. Well last month she had to go 2 times. So the dr that was on staff pretty much said to us he feels there is a problem. I did not even know how to respond to this. Long story short he pretty much flagged her as a drug seeker. We tried to explain to him all the details of her life. By then he really was not even listening. What do you do when you run into this. I feel so bad for my wife and i want to help her. Tomorrow we are going to see her pain management dr. It’s very frustrating to me that this dr did this to us. I’m glad i found this site there is so much good info on here.
    thanks for any help

  • #40864
    Avatar Image
    Ellen
    Participant

    CHER – First, there is an easy way to find out if the doctor has flagged your wife as a drug seeker. Ask for a paper copy of her records from that hospital. The doctor will have made a notation if he considers here a drug seeker.

    I’ve known it to happen in the past, that the doctor gets frustrated at not being able to help and the patient or family member sees that frustration and misunderstands it. That said, it is still entirely possible that you are right and she has been flagged. Really the only way to know is to get copies of her records. I suggest all patients get and keep copies of these records ALL THE TIME. This is the only way you will know for sure exactly what is going on.

  • #40865
    Avatar Image
    nancys61
    Participant

    Hi,
    When I was at my Headache Specialist’s office for an appt several months ago, I mentioned that I’d had a really bad 3 day migraine over the weekend that no medication would touch, but I refused to go to the ER. My Dr told me that I can always go to her office for Phenergan & Toradol injections. So far, I’ve had to be driven to her office twice in the past 3 months for injections. The last time was day 4 of a 10-on-the-pain-scale migraine, a monday. They gave me larger doses of medication, my Dad drove me home and I slept like 12 hours. I still had about a 4 on the pain scale the next day, but the migraine went away the following day. And my insurance pays for the total cost, as I don’t see the doc because the nurse gives me the injections after consulting the doc for the dose.
    Maybe this would be an option for other migraine sufferers.

  • #40866
    Avatar Image
    Ellen
    Participant

    Fortunately, some physicians offer this service and it can be extremely helpful for some patients. Other drugs can also be utilized, including DHE which will actually work to abort the Migraine process. I am not a fan of phenergan because of the risk of tardive reactions however, it is helpful for a lot of patients.

    Additionally, not often thought of as an option, some Migraineurs who find themselves in need of IV treatment and don’t like to go to the ER or their physician’s office too often… home treatment through home health care nurses, is available and although it takes some planning ahead of time, it does work well for the patients I’ve known who have utilized it.

  • #40867
    Avatar Image
    shybear
    Participant

    What are tardive reactions? I have been taking phenergan for four years since I was diagnosed with my migraines I read the pamphlet that comes when you pick up perscriptions but I still like knowing these things

  • #40868
    Avatar Image
    Ellen
    Participant

    Hi Cheyenne,

    A tardive reaction is a specific type of reaction to a list of medicines that are frequently used for Migraine treatment. Here are two links you might be interested in reading:

    How can I keep my Migraine medicines down so they will work? http://migraine.com/blog/how-can-i-keep-my-migraine-medicines-down-so-they-will-work/

    Migraine triggers and comorbidities: Dystonia http://migraine.com/blog/living-with-migraine/migraine-triggers-and-comorbidities-dystonia/

  • #40869
    Avatar Image
    shybear
    Participant

    Thanks for posting that. I will show my mom about it to see what she says.

  • #40870
    Avatar Image
    lorimaltby
    Participant

    I am a migraine suffer of 10+ years and I think I have seen every Doctor possible. I have seen several neurologists, been on almost all proflatic medication, had botox put into my head they even went to an extreme and administered propafol (is used for general anesthesia) til I go under and then right away they bring you back, well that didnt help either. I have been on the nasal inhalers but I noticed they were severely addicting and that was my fear.I have used all the triptans and I am allergic to alot of other meds like imatrex, my throat closes. So needless to say the Dr doesnt know what to do but tells me if you get a real bad one you will need to go to the ER.Well when your their at least once a month your chart gets flagged as a drug seeker because when the Dr asks what works for you and I say IV Benedryl, Dilaudid and Zofran but because I know they assume I am just drug seeking.You get treated much differently they want to make you mad and see what you will do when they say I am not giving you that. Then I explain I am stuck between a rock and a hard place because my Dr is telling me to go to the ER for a severe migraine and the ER says this is not a true emergency since you get these often and they say I am not giving you the medication you asked for. I sit and cry in pain and dont know what to do or who to turn to. I use to work in an Emergency Room in registration but I would over hear the Dr say, Lori is back already, and loud just embarassing. Some of the Dr’s believed my story and some didnt, I would tell them I have no reason to lie I just want relief! Because of me the hospital drew up a contract for patients that come in for migraines that you have to sign. It says they will only treat you 2 times in a 12 month period with non-narcotic meds. The only thing that has helped abort my migraine is a high dose of dilaudid, zofran, and benedryl I usually need it repeated twice and then I go home and sleep for 2 days. On my 3rd day Im groggy but better.
    The anxiety and stress I get when I know I have to go to the ER is horrible! They ALL know you on a first name basis and then you hear them whisper to one another.
    I have recently moved to FL the perscription drug capital of the world, so if you go to an ER here they automatically assume you are a drug seeker. I had to go see a pain clinic Dr now who manages my narcotics, and if I need it IV which I usually do because Im vommiting they want a letter from the pain dr giving them permission to treat me but they want a protocol on file. Now I find out if you come in more than your usual they will deny treatment.
    Now I guess I can see where this narcotic issue could get out of line but I also think the Dr should access what type of person you are (like stereotyping). I usually am in sweatpants, a tshirt and my sunglasses and a barf bag when I come. Then when you sit 4 hrs in the waiting room with screaming babies, kids running all over, all these single parents use the ER as their clinic and they hang in groups so its like lets get the kids together to play, and one of the moms says I need to go to the ER for a migraine, so they ALL come in to wait for her in the waiting room and are loud and abnoxious.
    Im sorry I went off on a tangent but basically if you get cronic migraines you better hope you have a great personal physician that you can call and they will make room on the schedule to see you. But you need to be very honest with your primary DR as far as medications you take. Like I get 2mg dilaudid pills but they do not do anything for me anymore due to my tolerence built up, so now I need 4mg or 8mg tablets or if they start an IV because Im always dehydrated, the IV is more powerful so they give you half the dose.
    Im sorry I could go on forever, and as far as family goes they are their for you thru several migraines, the feel sorry for you etc. but now my family just drops me off and they go do their own thing and come back when I call. It makes me sad I sure didnt want these and to come between a family but they sure have. I have missed so many of our boys sporting events, due to a migraine. But I truely believe if someone has never suffered a migraine then they have no place to judge! Pain to one person could be a 10 where someone else would say a 5. I just truely believe in open communication with your Dr good or bad and they respect you for that. I told my Dr I think I am becoming ammune to the 4mg dilaudid, they dont seem to help me anymore.Im sure as a Dr they dont want to increase the mg’s because they know that the final straw is when you are completely hooked now. I do not feel it is the Dr’s fault in anyway, as I lay crying in front of him with my sunglasses on and am scared that their is not much more they can do because then it brings in aanesthesia, because with all the medication in your body it bottoms out your BP and then they freak and think you will stop breathing.
    I wish everyone the best with your own sitution and pray we can get to a happy medium for everyone involved. If someone has a similar story I would love to hear it.
    Thanks,
    Lori

  • #40871
    Avatar Image
    Ellen
    Participant

    lorimaltby – Below are a couple of links I really think will be helpful to you.

    Bottom line, there are ways to deal with this. The fact is that you are ending up in the ER because you are in pain. You tell them you need pain relief. Have you ever asked them to abort the Migraine? This in effect would also relieve the pain. I understand your medicine limitations, mine are similar. There are so very many options though, much better than narcotics which have been found to play a big part in the chronification of Migraine.

    One other thing. Realize that you are on opioids for pain, you are not misusing them as an addict. You are dependent upon them to do what they are designed to do – control pain. That doesn’t mean you are addicted. There is a difference. Addicts use medicines for a high. You seek relief from your pain, not a drug fix. Sometimes reminding staff of this is helpful, sometimes not so much. Either way, it’s something you need to realize and possibly make peace with if you are unable to use anything else that will work.

    Have you tried going in with a written protocol by your doctor? Have you tried making an agreement with the ER physicians to try what they want to try, then if that doesn’t work go back to your usual protocol which does seem to be helpful?

    Why does the Emergency Department treat me like a drug seeker? https://migraine.com/blog/why-does-the-emergency-department-treat-me-like-a-drug-seeker/

    Tips and tricks for a successful Emergency Room visit: https://migraine.com/blog/tips-and-tricks-for-a-successful-emergency-department-visit/

    Migraines From an ER Doctor’s Perspective https://migraine.com/blog/migraines-from-an-er-doctor%E2%80%99s-perspective/

    Migraine & The ER – A Follow-Up Interview https://migraine.com/blog/migraine-the-er-a-follow-up-interview/

  • #40872
    Avatar Image
    sherylhowell
    Participant

    Hello,
    I found a site one time that had a form that you could have your doctor sign stating that you were not a drug seeker. Do you know what site that form is on?

  • #40873
    Avatar Image
    Ellen
    Participant

    sherylhowell – A form stating you are not a drug seeker is not the best thing you can do for yourself. You would be much better served by having your doctor write you a note that 1. Gives the current treatment protocol that works for you and 2. States that you are a Migraineur seeking treatment for your condition, and that you should not be considered a drug seeker or addict.

    One reason for this is the ease of forging a signature. When a letter is on a physician’s letterhead or on a prescription pad, it will be taken much more seriously than an obvious form letter that was perhaps mindlessly signed. JMHO.

  • #40874
    Avatar Image
    cancan
    Participant

    Ellen, you and this site is a Godsend!!!!! I have begged MEDMD since 2007 to start a Migraine site! I don’t know how Migraine.com got started but it is such a relief to have a place to go….I thank you and whomever for realizing how desperate some are for support and knowledge re: any help with their migraines!!!! The sad thing, I did not know this site was even available, I just gave up looking a few years ago, continued suffering, up to this minute.
    My experience in ER’s are interesting, I have been to two only, I will not go again unless, after reading all the experiences here, until I have a plan in place with my Physician and Pain Specialists!! That is tremendous information for some of us who were not “in the know”..!
    I thank all of you who wrote and Ellen for sites to refer to…you all are “gems!”
    My first experience was about 2 years ago, a super, break-through migraine I’d had for about 8 days. I generally took Fioricet w/codeine, for the past 45 years, but since my migraines have increased to daily, I had to take more pills than I usually had to do….but I was having so many rebounds…I needed extra help! So we, my husband and i, head
    to the ER to a local hospital we have used many times, in fact 3 of my family members has died there. Upon admission the admitting girl said I was having a panic attack! Just like that…she diagnosed me! I said, no….I am nervous that you cannot help me!!! She then said, what do you think is wrong with you? I told her I was having a break-through migraine….well she had never heard of such a thing!!! But she took my information, told me to sit and wait. And as others have written, it is not a good experience in the waiting room, so I won’t elaborate about my “fun” time! But I will say, I think, in hospitals, there should be a special room for migrainers and those who walk in with any kind of head pain!!
    After 2 hours they came to get me, put me in a wheel chair, for which I was grateful as I was very weak, migraines take over ever inch of my body sometimes. When I got in my “room” they asked me what was wrong, what level of pain I was, I said I was off the pain chart! So I was given a morphine drip, the attendant said “she will be out in 5minutes”. Five minutes later I was still in pain but maybe finally down to a #10!!! The attendant came back and was shocked that I was awake, talking to my husband and daughter, who came to help out, she is a migrainer also. So I was administered another bag of morphine, I don’t remember how much each bag contained, but I never did go to sleep…which I needed so badly, especially after an 8 day super huge migraine! They also did a Cat Scan of my head and an extreme heart exam, i was grateful again for that decision. All was well in those depts, but i have had plenty of MRI’s etc over the years. So, the attendant sent my husband and daughter home, they kept me the night…I never did go to sleep….all night. In the morning a doctor came in to talk to me, sat down and preached to me about the medication I was taking and that I should refrain from taking it. I told him generally taking 2, then 4 hours later taking 2 more would abort the headache…I had used this medication for 45 years!! He said…get off of it!! With that, he sent me home, he was a very harsh man, just like a headache wasn’t the issue! Like the issue was….I was there in his hospital! I won’t go back!!!

    Sorry to make this so long but I feel that I finally am able to write this, I have been stifling a lot!!
    My next visit, still with the same migraine, was a week later, to THE best hospital in the Southwest for Neuroligical procedures, or so I thought. I know people whose brain surgery was 100% successful at this Institute, so why would I mess around and NOT go here for a Neurological test of my brain or whatever was causing my migraine problems after 65 years of pain? When I finally got to see a doctor and her assistant, they decided I needed THE Cocktail…!!! I sat in a chair, a large male nurse said, you won’t have any migraines after having this! In my mind, with a #10 migraine, I thought, finally something is being done for me after 65 years of pain!! After half the bag of fluid (oh, why didn’t we ask what was the mixture of fluids that were in that bag?) and as I was talking to the “Nurse”, my husband said I began to “babble” on and on, not being able to understand what I was saying??!? My husband asked, “what is happening to her?”. The Nurse could not give him an answer! I then began to convulse VIOLENTLY!! Bending over in the chair, then flinging my body straight out with a lot of force, bending over to my knees again, thrusting straight out again…I could feel what was happening but could not control myself from this horrible convulsing! After about 20 violent thrusts, my husband panicked, the Nurse panicked, my daughter finally walked in and she said to the Nurse, DO SOMETHING!!!! My mother is dying!!!! A red alert was sounded, the Nurse was going off duty for the day, someone else took over, they began to reverse out of me, what they had put in, with “aborting fluids”, to which they later said I was allergic to….?!?! I was there well over 12 hours when they finally got me stabilized…and released me to go home!!! I should have stayed the night and been monitored, it was not fair for my husband to ave to sweat it out the night as to whether I would still live or die!!! Guess what? During the convulsions, I blew out my left knee which then needed SURGERY!! Sweet!!! So I survived “The Cocktail”…only to have knee surgery 2 months later! Right after that surgery, when I got home from the out-patient hospital, about 45 minutes later…I started to choke and cough…..and OUT FLEW A DISC, 1 3/4″ in diameter! WOW! A shock! I could have choked, possibly died if it had of gotten in my lung!
    Oh me….that is ONLY 2 incidences of a 65 year history of migraines, but just 2 times in the ER….one not too bad, the other very drastic!!!
    I won’t go on any longer, but just some good advice…..ASK QUESTIONS!!!! I now ask a lot of questions….lots of doctors don’t like it….but it is my life, not theirs!!! If they can’t or don’t want to give you any information, LEAVE!!!! PDQ! It is not fair that you aren’t informed what is going on with you! I hope to write my story on Migraine.com, but I need to condense it…..being 73 years old, having these headaches since I was 8….so many incidences with migraines, it is unreal. I had a #10 today, took 2 Fiorinal w/codeine, it is gone! Codeine works for me! Believe me I have tried $$$$$$$$ worth of medications, I always go back to Fioricet or Fiorinal w/codeine…it works for me!! Try to convince a doctor that I know my body…and meds , you can’t! Be careful in the ER’s and my love to all migrainers!!! CanCan

  • #40875
    Avatar Image
    Ellen
    Participant

    Carolyn – There is so much to say about your experiences! First though, thank you so much for your enthusiasm and praise! I know the team will love to read this – it will truly make their days :D

    Going on…

    #1 – I would like to introduce you to this link https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/ which talks about MOH – Medication Overuse Headache. This is not addiction and is not the fault of the patient, so I want to get that out of the way right off. When you take certain meds – pain meds in particular – they initially help with the pain, but taking them more than 3 times a week actually creates changes in the way the brain is wired. Eventually those meds that were helping are now actually CAUSING the pain. Two of the very worst to cause MOH are butalbitol (in Fioricet) and opioids. Not only doe it have a terrible reputation for causing MOH, but it also can lead to the chronification of Migraine or new daily persistent headache which is very difficult to treat. Your doctors weren’t misunderstanding you, they were trying to protect you from progressing and transforming into a much worse situation than you were already in. Their problem was that they didn’t take the time to explain that to you so you would understand, which is typical, but very sad treatment in the emergency department.

    #2 As you’ve realized, you should ALWAYS ask what the meds are you are being given. If you have a reaction to something, you can get copies of your hospital records after the fact by just requesting them. The normal Migraine “cocktail” contains a group of medicines that can be extremely effective for Migraine, but can also lead to something called a tardive reaction. Based only on what you’ve said, I would like to give you another link to read about these types of reactions. Unfortunately, it happened to me too and I now have permanent issues as a result. Here is a little on antinausea meds and tardive reactions: https://migraine.com/blog/how-can-i-keep-my-migraine-medicines-down-so-they-will-work/ and here is one about Dystonia https://migraine.com/blog/migraine-triggers-and-comorbidities-dystonia/ What can happen with these medicines is something called a Generalized Tardive Dystonic Reaction. It causes terrible body wide spasms which can be violent enough to rip and tear tissues and even break bones. I have herniated discs in my neck as a result of my tardive reactions. Most doctors don’t recognize what it is when it happens, but it is completely avoidable. Here is a list of some of the meds that can cause this type of a reaction: http://www.spasmodictorticollis.org/media/pdf/Broch-Meds.pdf Don’t be confused. Torticollis is just another type of dystonia which responds to those medications in a severe way.

    #3 I highly recommend that you see a headache specialist for your Migraines and headaches. This is the very best way for you to receive up to date and appropriate treatment. Honestly, we don’t usually treat pain much anymore but try to abort those Migraine attacks instead. When the attack has been aborted, the pain disappears. Migraine has been treated as a pain condition, and that is a mistake. Pain is a symptom, but it is not the problem, and we need to treat the root of the problem. That is a very difficult thought process to break though.

    Hang in there, and good luck. I would love to private message you here re: something else, so be sure to check your messages today too!

  • #40876
    Avatar Image
    yellow95
    Participant

    Well, My when I was 12 years old I got my first migraine. Well, I still have it I am 38 NOW… My Mom took me to the Doctor after it lasted 2 1/2 weeks long. He put me on Tynol 3 w/codine for years. I also was pregnant at 22 years old and they left me on that medication. I had a normal pregancy. Then 2 years later I still the same with the head aches and so was pregnant with our second child I was very, very sick with this pregancy I couldn’t hold nothing down head hurt… They put me on my medication along with Epitol (a sea sick medication) so I could hold down food. After some time I started feeling a bit better. But my child was born very early and I had a premiture baby with a lot of problems. Then Same Thing all over again. But This Child of mine was born Autistic. Now I Have dignosed with Bi-polar syndrom along with Migraines. I have went to eye doctor he put me in glasses, I have even been to Chicago To Dimond Headache Clinic for Help. I have Changed My Diet, I Take Medication like I am perscriptions medication and I still can’t deal with these headaches.. and still to this day my head hurts.. And now one of my children have been complaning now of headaches..
    lost & Confused ??

  • #40877
    Avatar Image
    Nancy Bonk
    Moderator

    Hi Yellow,
    I’m sorry you are hurting so right now. It is not uncommon for children of Migraineurs to have migraines themselves. In fact if one parent has migraine the child has a 50% chance of having it, the risk goes up to 75% if both parents have migraine.

    You seem to have done quite a bit about your migraine treatment, which is great. Have you ever kept a migraine journal? This will help you see if you have any patterns to your migraine and what triggers you have. If you haven’t done one, it really is helpful and most all the migraine specialists we work with suggest people with migraine keep a journal. Here is a link for the Migraine Meter; https://migraine.com/migraine-meter/
    Here is our information on children and migraine I hope you find helpful; https://migraine.com/migraines-in-children-and-teens/
    And I hate to say it, but is it time to find another migraine specialist to work with to help get these migraines under control? Let me know what you think, OK?

  • #40878
    Avatar Image
    Ellen
    Participant

    yellow95 – We have been able to find some Migraine related genes. We know that Migraine is a genetic neurologic disease, so it is not unusual for you as a Migraineur to have kids that suffer as well. You are not alone though, I assure you. The best thing I can encourage you to do for them and for yourself is to spend a lot of time here educating yourself about the ins and outs of Migraine disease and living with it.

    Are you seeing a headache specialist??

  • #40879

    I’ve been a migraine sufferer since my teens, although the past couple of years have seen the frequency and intensity of my migraines going through the roof. A few weeks ago on day five of a 10 migraine I gave in and went to the ER. Now, since I’m unemployed and don’t have insurance the ER is something I try to avoid since you pay a premium for their services.

    Luckily when I got to the ER there wasn’t much of a wait and they were extremely considerate to my migraine; the nurse asking if the lights were bothering me and dimming the lights. The hardest part of being admitted was the length of time it took for the nurse to update the computer with all my allergies and to then write them all down on 6 red bracelets because of how many medication allergies I have.

    The ER doctor wasn’t too bad although his bedside manner wasn’t the best in the world, but when you’re begging to have them just cut your head off it could have just been my pain clouding my perceptions. The doctor said the hospital had a headache cocktail that usually works and that we’d start there. Shortly after the doctor left the room, the nurse came in to start the IV and medicine cocktail.

    Now my migraine was at a 10 when they started their “migraine cocktail” and by the end of the cocktail I would have sworn my 10 had become an 11. Not to be deterred, the doctor ordered more medications, more magnesium, and lord only knows what else. Sadly none of the pain medications they gave me worked and after about 5 hours in the ER the doctor was at a loss; my migraine wasn’t responding to any of the pain medications. To the hospitals credit, rather than discharge me they admitted me to the hospital since they couldn’t get my pain levels down. At that point I basically had free reign over my meds and could get anything I wanted if it would help my pain; this was something I wasn’t prepared for.

    In the morning I was given a CT scan of my head, the neurologist came in, and informed me that I was suffering from a migraine (no, really?? Tell me something I didn’t know). The neurologist ordered a shot of Imitrex; finally something worked! Well, sort of as it only brought my pain down to an 8, so that first shot was followed up with a second shot some time later which brought my pain down to a 2. I was in heaven as I couldn’t remember the last time I was at a 2. While they didn’t completely get rid of my pain, they did at least give me significant relief from my pain. Once I was at a 2 I was released from the hospital. So for me it was a good trip to the ER.

  • #40880
    Avatar Image
    Nancy Bonk
    Moderator

    Great! Do you now have a prescription for Imitrex that you can take at the first sign of a migraine attack? That’s when triptans (medications like Imitrex and others)work best – at the first sign of an attack.

    I read your other post and know you’ve had problems with preventive medications. Have you thought about seeing an expert who treat our disease – migraines and headaches? This would be a “true” migraine specialist, not a neurologist who claims to be an expert in headache medicine. Let me assure you there is a difference. When you get a chance, take a look at this article about migraine specialists; http://migraine.com/blog/how-are-migraine-specialists-different/

  • #40881

    I do have a prescription for Imitrex now and so far it’s the only thing I’ve found that actually works on my migraines. I also have a follow-up with the neurologist later this month, so hopefully we’ll come up with a new preventative plan then. I get 22 – 25 migraines per month lately, get 9 pills of Imitrex per month, and so far it’s taken two pills to knock down one migraine, so I’m selective about which migraines to abort (sort of depends on what I have going on any particular day).

    Sadly the closest headache specialist is over an hour away and I don’t own a car, so it is difficult for me to get over to where they are. The neurologist I am seeing is one of the best locally and seems to have a good understanding of migraines, so for the time being I’ll continue to work with him on my migraines. If my situation changes I might go to a headache specialist but right now they are out of my reach physically and financially.

  • #40882
    Avatar Image
    Nancy Bonk
    Moderator

    Hi,

    I’m glad to hear you have a good working relationship with your doctor, that is really key. The next time you see him you may want to discuss migraine prevention in addition to taking abortives. You see, here’s the thing; anyone who has more than three migraine attacks a month needs to be talking with their doctor about prevention. Chronic migraine is defined as having migraine or tension-type headache on 15 or more days a month. It sounds like you are. But then you probably know that already!!

  • #40883
    Avatar Image
    kimberlyflick
    Participant

    Hi all!
    I was diagnosed with migraines at 16 but know I suffered prior to that. At 31, I’m experiencing them at roughly the same rate (1 every 1-2 months) unless they are triggered by extreme stress. When that happens, the migraine is bad. I mean, off the charts BAD. But I refuse to go to the hospital because I don’t want them to poke and prod me so I can wait an hour for test results only to be given Imitrex or something. Am I looking at this the wrong way? The last migraine I had I took two 50mg doses of Imitrex, two Ultracet, and 4 Tylenol 3 before the incident was over.

    I told my doctor the ER would make me have a CT Scan and I didn’t want that when I knew what was wrong. Should I have one?

  • #40884
    Avatar Image
    Nancy Bonk
    Moderator

    Hi Kimberly,

    So to make sure I understand you correctly, you get one migraine attack, every one or two months? Is that correct? If that is the case, are you taking Imitrex at the first sign of your migraine attack? Taking abortives like Imitrex when you first feel a migraine coming on is the best way to use this medication and actually the way it was designed to work. On the other hand, if we have more than three migraine attacks a month, it is time to talk to our doctor about preventing them.
    Sometimes it is necessary to go to the ER when the pain is unbearable. In these cases, we can have our doctor fill out a protocol sheet so the ER staff knows how to treat us. We also have this information on the ER that may be helpful for you;
    Why does the Emergency Department treat me like a drug seeker? https://migraine.com/blog/why-does-the-emergency-department-treat-me-like-a-drug-seeker/

    Tips and tricks for a successful Emergency Room visit: https://migraine.com/blog/tips-and-tricks-for-a-successful-emergency-department-visit/

    Migraines From an ER Doctor’s Perspective https://migraine.com/blog/migraines-from-an-er-doctor%E2%80%99s-perspective/

    Migraine & The ER – A Follow-Up Interview https://migraine.com/blog/migraine-the-er-a-follow-up-interview/

    As far as stress as a migraine trigger goes, Teri has written a good article about it here; https://migraine.com/blog/your-worst-migraine-triggers-stress-really/.

    As far as having a CT in the ER, that is up to you and the ER docs. Not a bad idea if it was the WORST headache, or migraine of your life.

  • #40885
    Avatar Image
    kimberlyflick
    Participant

    Nancy, you’re right about my migraines. I’m actually on 175mg of Topamax daily and 40mg of Celexa. One migraine every 1-2 months is good for me. I can have them more often – but what I call a “migraine” is a “full-blown event”. I don’t think a week (day?) goes by without at least the feelings of a headache coming on.

    Can’t wait to read the articles you listed. I think they’ll help give me some perspective. Every single time I have a migraine, my mom starts asking if I need to go to the hospital. I know she’s worried but I just want to be left alone. Maybe if she reads these as well she can understand when I should go and when I should not.

  • #40886
    Avatar Image
    jimhagen
    Participant

    My neurologist/headache specialist has recommended that I only go to the ER on Mondays, and most certainly not on the weekends… and only at their hospital which is about an hour away. I have intense headaches everyday for the last 6 and a 1/2 years. I used to go to the ER in the beginning but the abusive orderlies and other issues like being poisoned (serotonin syndrome) have made me extremely cautious about ERs. I often have “Soul Crushers” and I would rather ride those out than take a chance of having an adverse drug reaction again. I live in the “headache world” but serotonin syndrome was so awful… I was begging to just have constant headaches again…
    I say this not to keep anyone out of the ER but you should be aware that they can make things worse. The thing I do watch when my pain is really bad (if I think of it) is my blood pressure. Sometimes when I have breakthrough pain my vitals will skyrocket. That would be the only reason I would go. And we would try to contact my headache doc on the way over. I have at least 4 different types of headaches and it can get scary. Sometimes I am afraid that the pain and the resultant adrenaline spikes will kill me. But I think it is important that you have a strategy if you do go to the ER. The other issue is that sometimes I am concerned that my behavior (like screaming my lungs out) will be misinterpreted by the security and then things could get ugly. I have been asked to shut up. One time a lady was practically begging them to take me first.

  • #40887
    Avatar Image
    jimhagen
    Participant

    Sometimes people say their pain is a 10 on a scale of 1 to 10. And then they say 11. If it was 11 you would be dead. My policy is to not use the 1 to 10 unless it is based on a faces of pain or some other kind of verbal scale. You should know that Dr.s use the number scale to screen out drug seekers. Plus it works against you as a patient. If you refuse to use it you kind of have to be a strong person because some nurses and doctors will give you some push back and treat you like your non-compliant. Would you ever say 2 or 3? The way the body is laid out with nerves that would actually be an intense amount of pain. But who goes to the ER for a headache and says 2? around 7 or 8 you shouldn’t be able to form words… seriously… so how can you say 8? It’s rubbish. The scale is just a way for them to make short work of you.

  • #40888
    Avatar Image
    jimhagen
    Participant

    Another thing you may want to consider is to do what ER doctors do to you: and that is to label them. It is not petty to do this if you are doing it for your survival.
    After several decades of experience as a chronic pain patient/human being this is my system:

    Healer> Functioner> Idiot> Tormentor

    The healer doesn’t exist in a pure form unfortunately but some doctors try at least. The functioner sincerely does not want to hurt you and they are very organized. They seem to be like a horse with blinders on. These two are on the good side.

    The Idiot is usually intelligent but he/she is spinless and is a servant to the: Tormentor. Most of you have met the Tormentor. Sometimes he/she starts out nice. In a major hospital the Tormentor will always have a toady, the Idiot. Interestingly if the Tormentor is a nurse it is possible that the Idiot servant will be a Doctor. Check it out based on what you see. You deserve to have a healer or a functioner and you must identify those who would do you harm.

  • #40889
    Avatar Image
    Nancy Bonk
    Moderator

    Hi Jim,

    Interesting way of approaching things….thanks for sharing your thoughts!

  • #40890
    Avatar Image
    morgie
    Participant

    My daughter is currently going through a bout of abdominal migraines that has kept her at home for 8 days. We have an appointment with migraine specialist-but not till a week from Friday. She is newly dianosed and we are moving forward, but I am not sure what to ask for or give her in her meds when she is down like this? Can you break a cycle? Can I give her extra doses of meds? I don’t want to overdose? Are there any meds to give that will break symptoms that are not in pill form. I call her GPrac and he gives me Mazalt 5mg disolvables, but arent those just preventative?

  • #40891
    Avatar Image
    Ellen
    Participant

    Morgan Farley – these are really good questions to talk to your doctor about. Because each patient is different, there are no pat answers for some of your questions.

    However, I urge you to follow your doctor’s advice on medications. Having an open line of communication with him/her will be helpful so if you get in a jam hopefully you can get in touch with them for additional ideas. Having a plan in place for times when your current management isn’t working is a great idea. You might want to include a prescription for ER physicians in case she should become dehydrated and need care there as well.

    Yes, there are meds that aren’t in pill form. It might be very important that you learn about these and how to utilize them, making sure to ask her doctor about them. Here is a post about compounding that will give you some ideas, however many meds already come pre-prepared in non-oral forms: http://migraine.com/blog/what-is-a-compounding-pharmacy/

    Maxalt is an abortive in a class of drugs called triptans. They can cause something called medication overuse headache however, so should not generally be used more than a few times in a week. Again, talk to your doctor and ask him/her about MOH and make a decision together.

    Good luck. I hope you keep in touch with us and let us know how things are progressing…

  • #40892
    Avatar Image
    rilniski
    Participant

    Hi all. I’ve never been to the ER for a migraine but for some I should have gone as they lasted more than 72 hours. I usually manage my migraines from home with my abortive medication and if that doesn’t work a rescue medication. I also am on 25 mg of Topamax and 50 mg of Elavil for prevention. I use Zofran for antinausea and Zomig nasal spray for my abortive.

  • #40893
    Avatar Image
    Nancy Bonk
    Moderator

    HI Rilniski,

    Good for you! As much as we are encouraged NOT to use the ER for migraine, sometimes it is necessary. Up until now I’ve been fortunate not to use the ER as well. I have however, been to my doctors office to have IV infusions of mag sulfate to break a migraine.

  • #40894
    Avatar Image
    lmbg
    Member

    Hey folks. Just found this website and I am so impressed with the moderation and information given. It’s a big gift to migraineurs. Thank you.

    I have had migraines for 35+ years. They’ve changed and cycled. But, so far, they are the most consistently present thing in my life. Sad, but true.

    Over the last few years, I had largely controlled my migraines. First, with preventative meds (Topomax – the brain thief). Then, once things got evened out, with major diet changes and exercise – while weening off the Topomax.

    Unfortunately, something has triggered a flair unlike any I’ve had before and I am now in the midst of a twelve-week experience of constant discomfort and aura, punctuated by episodes of full-blown migraine. Some of these episodes include prolonged numbness in the extremities and prolonged visual disturbances (not something I’ve dealt with before.) Because of that, I went back to a neurologist. And, in the process, also a local ER.

    I’d never heard of a “migraine cocktail” before the last few weeks. That’s saying something. 35+ years… and never had anyone suggested I take benadryl as part of migraine relief.

    I will never, ever, ever allow that to be administered to me again. 4+ hours in the ER. I drove myself. Was not in acute pain – which I communicated very clearly. I was there because I was concerned that I might be having a coronary issue – or significant neuro issue – and did not want to ignore it due to the migraine issues.

    As bad as I felt when I went in (generally – this bout is exhausting me) – it was nothing compared to the feeling of wanting to jump out of my skin that I felt once I had the IV of benadryl, toradol, and zofran. I had to, literally, talk to myself – out loud – and convince myself not to tear the IV out of my arm and run out of the ER. I have never felt that way before. Add to that the fact that what little pain I had was not altered. It was horrible.

    I would not have let them do it, except the new neuro had suggested it, too – with the addition of prednisone. Bad idea.

    Bottom line: This was my first time in the ER with a migraine. And, it will be my last. I am actively pursuing making sure I have whatever abortive/palliative meds I need at home – all the time. And, thanks to this site, I’ll be discussing a referral to a Headache Specialist with my GP.

  • #40895
    Avatar Image
    Ellen
    Participant

    lmbg – I am so very sorry you had this experience. Unfortunately, I have known others who have not been able to talk themselves down. That particular reaction is not super common, but common enough. They should have warned you that it was a possibility. I am wondering if they may have given you other medicines as well?

  • #40896
    Avatar Image
    larissataurins
    Participant

    LMBG: I had a similar reaction to my migraine ‘cocktail’, unfortunately more than once, in the ER. The first time was to Maxeran – within minutes of receiving it in my bloodstream I started thrashing, wanting to run out of the room, rip out my IV. They gave me a megadose of benadryl to calm me down, which worked but not fully.

    The next time was worse, with Stematil: This time the feeling of getting out of the hospital and ripping out my IV was so intense I for some reason faked that I was feeling better just so I could start running. The minute my IV was out, I was tearing out the hospital, thrashing, couldn’t stop moving, I peed on the sidewalk outside the hospital. I was crawling all over the car on the way home, At home, the constant thrashing and screaming was pure hell. I felt like I was bursting out of myself and I would never survive this. It slowly died down and eventually over the next two or three days the reacion was out of my system.

    Now, I get this reaction more and more to other meds, particularly SSRIs.

    For this reason, I am terrified of going to the ER for migraine, and don’t go when I really should with status migraine. I associate it with these horrible reactions and don’t want to experience that again,

  • #40897
    Avatar Image
    Ellen
    Participant

    larissataurins – Did your doctors tell you this was akathesia? This is a not-so-uncommon reaction to certain medications that makes it so you can’t stop moving. It can be quite scary, as you’ve experienced. However, not all medicines will cause this reaction. Status Migrainosus is not something to be ignored, as it can rarely result in Migrainous stroke.

    I am assuming here that you are not seeing a Migraine and headache specialist. That is really important, especially if you are having these types of reactions.

    Here again is the link for specialists: http://migraine.com/blog/looking-for-a-migraine-specialist/

    I urge you to seek treatment for your Migraines, but do so before you need it. In other words, get with your doctor and have a written plan, so if the worst happens, you are prepared. This not only makes your treatment easier and more efficient, but the anxiety tends to be less because there is no *unknown* factor.

    Here is a link about good ER visits: http://migraine.com/blog/tips-and-tricks-for-a-successful-emergency-department-visit/

    Here is a doctor’s view on ER visits and a follow-up interview by me that discusses other options: http://migraine.com/blog/migraines-from-an-er-doctor-perspective/ (don’t miss the link to part two at the end) and mine is here: http://migraine.com/blog/migraine-the-er-a-follow-up-interview/

  • #40898
    Avatar Image
    Janjan
    Member

    I suffer from Acute Daily Migraine for the past 22 years. Only 2 months ago, I was rushed to ER “again” due to disabling migraine. My pain level is 10 and I was really crying in pain. Whenever I have severe migraine headache and I will call my on-call doctor first (if it’s after office hours), then the on-call doctor will decide if I needed to go to ER, if he said “YES” I will go ASAP. So, they don’t treat me as a drug addict that only needed pain meds. Last January 13, I was already in the ER room and I called the on-call doctor because they took blood work and it will show that I have high level of hydromorphone in my system and the ER doctor might just gave me IV Hydromorphone 2 mg (1 shot only) plus IV Zofran. I said that is not enough that’s why I called him in the middle of the night. While I was talking to him, the ER doctor came and I gave my cellphone for them to talk. I thanked God because the ER doctor gave me 2 shots of Hydromorphone because the first shot I got has no relief, I was still crying in severe pain. Then the nurse came again after 15 minutes, injected the second dose, that’s when I got my relief. When they discharge me, they were super nice to me. I don’t know what the on-call doctor told the ER doctor. The discharge paper had DX: Acute Migraine. Even when I was at work, when I end up getting a severe migraine, they will call 911, and the ambulance will rush me to the same ER hospital for the past 5 years. So they already knew me. And they know what narcotic iv pain drug works on me, the hydromorphone only. So far, I am still dealing with daily migraines, I’m doing biofeedback, seeing pain Psychologist, Psychiatrist (due to my chronic migraine) and my neurologist still does Botox. Only God knows, because my two daughters also suffers from migraine. I never heard of Benadryl being administered for migraine in the ER, maybe Toradol but definitely not Benadryl. They also might give Lidocaine shots or Marcaine shots. I have tried Marcaine shots as Greater Occipital Nerve Block and it works, I was so relief for 3 days, the other doctor gave it to me because my doctor was on vacation and when he came back, I told him if he can give me Marcaine instead of Lidocaine, for some reason, he won’t give it to me. The lidocaine is only good for one day relief whereas the Marcaine is 3 days. I can’t see the other doctor because that’s their protocol, you can’t see any doctors in their group only if your doctor is on emergency leave or on vacation. Trust me, I’ve tried used all the triptans drugs, the therapies. Last December, my daughter and I when for a second opinion because she also needed some migraine medications. I mentioned that my Headache Specialist doctor in NJ tried twice, the DHE-45 (Ruskin Protocol) where you stay 5 days in the hospital and she said, honestly you know more than I do. I was shocked but at least she’s being honest. I mentioned a lot of things I did, she never heard of because she’s only plain neurologist that don’t really treats migraines. She even told us that she too suffers migraine and also both of her 2 girls. I went to 2 headache center in NJ, but the well known doctor I went in New York, is the Top New York Headache Specialist, Dr. Alexander Mauskop. I was his patient for 3 years.

  • #40899
    Avatar Image
    Nancy Bonk
    Moderator

    Hi JanJan,

    I’m sorry to see no one has responded to you yet. Let’s see what we can do to help you out?

    I’ve meet Dr. Mauskop and is a very knowledgeable man – but that doesn’t mean there aren’t other options for you. And I know it really can feel like you’ve tried everything out there for migraine but that really isn’t possible. It would take close to 25 years to try all the various medications for migraine prevention taken the correct way at the proper dose. None of us have done that!

    The first thing to do is to get an accurate diagnosis because “acute daily migraine” is not recognized by the International Headache Society International Classification of Headache Disorders, 2nd edition or ICHD-II. This is the gold standard used to diagnose headache and migraine. “Acute daily migraine” may be used more of a descriptive term, but it really doesn’t tell you what kind of migraine or headache type you have. Migraine with aura, migraine without aura, new daily persistent headache, headache induced by substance use or exposure are just a few of the 300 different types of migraine and headache disorders out there. Once we have an accurate diagnosis we can learn all about our disease and then hopefully get the proper treatment. Here is a link on information on diagnosis and doctors; http://migraine.com/blog/migraine-management-essential-diagnosis-and-doctors/.

    As tried as you may be of seeing doctors, I would encourage you to see yet another migraine specialist, there are more who may have tricks and tips to help you. You already know that migraine specialists are the experts but may need to find another one- here is some information to help you with that; https://migraine.com/blog/looking-for-a-migraine-specialist/.

    Do you take pain relievers during the week? You see, anyone who takes certain over-the-counter and/or prescription medications more than two to three days a week runs the risk of getting medication overuse headache. It’s hard because we just want the pain to go away, but in doing so, can create this other beast. Here is great information on how not to overuse medication;http://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    I hope this is helpful, do let me know.
    Nancy

  • #40900
    Avatar Image
    zxcv
    Participant

    About a year prior to my formal diagnosis of complicated migraines around three years ago, I suddenly awoke around midnight with the loss of hearing in my right ear, accompanied by symptoms of possible stroke. Out of sheer fear I went to ER and they did CT, MRI etc, with negative results. This of course made me feel like they thought I was a nut case. The symptoms all faded within 24 hrs or so, and I thought no more about it. My next visit to the (in a different city due to moving) ER occurred on the day of the last earthquake in Washington, DC. I was one of zillions attempting to immediately exit the city via car when suddenly I felt a numbing sensation at my left foot/lower leg, which within minutes had made its way up to my left hand. At that point I am in disbelief that I am actually feeling my entire left side of body go numb..but once my face also became numb I was stunned and fearful I was experiencing a stroke. I finally made it to the ER where I was immediately taken in and given the same type testing as at prior ER visit, of course with negative results. Whilst lying there feeling spooked and idiotic at the same time the DR comes in and said he knew what was causing these symptoms – complicated migraine – stating he, too, suffers from them. He said that most ER personnel never identify this illness and think the patient is a nut! He referred me to a local neurologist he could highly recommend and thereafter I lived happily afterafter..NOT..but I did get tested and diagnosed with these migraines and prescribed daily dose of verapamil, and zomig as needed, both of which have helped dramatically in reducing the severity of my migraines. Now that I have been educating myself about migraines, to include having just found this website today and very happy about it, I better understand auras, triggers etc and now realize I have been experiencing various auras over the past decade. I hope my two ER experiences help someone else who experiences stroke like symptoms and gets negative results at the ER to think about enlisting the help of a neurologist for possible migraines. FYI I am a 58 yr old woman in otherwise good health, but who also was diagnosed with late onset clinical depression in 1997, a disease which is apparently common amongst persons with migraines. Have been on antidepressants since then, with current diagnosis of dysthymia.

  • #40901
    Avatar Image
    zxcv
    Participant

    opps, I just posted and forgot to add that I have also been diagnosed with menieres disease and fibromyalgia which appear to be somewhat associated with migraines…see, I still think I am in good health!

  • #40902
    Avatar Image
    Ellen
    Participant

    zxcv – Thank you for sharing your experience! I wish I could say your experience was not something we frequently see patients talking about. It happens a lot actually.

    In my personal experience, I was at work when I suddenly couldn’t speak. Keeping in mind I was an emergency dispatcher working alone and it was the night shift, and maybe you can appreciate the thoughts going through my head! Here is my story: https://migraine.com/blog/migraine-symptoms-transient-aphasia/

    It is important for the audience to know that, although you found help with a neurologist, this is not always the case. In fact, even the term used by your ER doctor is actually incorrect. Neuros simply don’t get much information at school re: headache patients, and it’s unfortunate that they can sometimes be the worst places for a Migraine patient to end up. Fortunately, we have Migraine and headache specialists though, who have received a LOT of extra training in diagnosing, treating and managing patients with headache and Migraine, and when we are able to tell patients about them, we often find that they get much better results. You can find a specialist close to you by looking at this link: https://migraine.com/blog/looking-for-a-migraine-specialist/

    You are right, fibro and Meniere’s disease are sometimes comorbid with Migraine. I’m sorry you’re having to deal with them, but am very happy to see that you seem otherwise to be healthy!

    Good luck with your treatment, and I hope the links here will be helpful to you.

  • #48246
    Avatar Image
    rockingpink
    Participant

    I’m 22 and have been diagnosed with serve migraines since before I was 10.. I’ve always been on some kind of meds for it. I have a migraine from the time I get up till it’s bedtime. But here’s why I’m writing…. On Feb 27 a migraine started so I just dealt with it like always. Well here it is Mar 1st and I went to the ER cause this is the worst I’ve ever had. This migraine is off the pain scale to me. But they didn’t do anything for me but give me a pain shot which didn’t help. I’m writing to see if anyone on here knows if the hospital can tell me no for requesting head scans. The last one I had was back when I was like 13. but brain tumors, aneurysms blood clots all that runs in my family and they told me no to the scans can they do that???

  • #48314

    Rocking Pink,
    I’m sorry you had a bad experience in the ER. Sometimes an ER doc views a Migraine patient as someone seeking attention or someone who is not as serious as another patient down the hall, which can be extremely frustrating. Because of the cost associated with these types of tests, I think it is all too often that hospitals with limited resources and time don’t go the extra mile to fully take care of their patients. Whether it’s legal for them to deny your request for scans, I have no idea and would tell you to consult a lawyer if you want to pursue it.

    I think that what you should definitely do now is see your doctor immediately. Most likely you can talk to him/her about your concerns and they can order these tests for you without a hassle. Since you’ve had Migraines for a long time, I’m assuming you see a neurologist for your condition? Your primary care physician could order scans, but you should really be seeing a Headache Specialist. Migraine/headache disorder specialists have extra board certification in headache medicine and while neurologists may be fine doctors they have a hard time being experts in one area because they treat so many different conditions like multiple sclerosis, epilepsy, stroke, Parkinson’s and others. Here is information on what makes these doctors so special and how to find one;http://migraine.com/blog/how-are-migraine-specialists-different/ andhttps://migraine.com/blog/looking-for-a-migraine-specialist/

    I hope you get relief soon!
    -Katie

  • #48347
    Avatar Image
    Ellen
    Participant

    Rockingpink,

    We have a whole series for people like us who end up in the ER and need help. Let me pull up some links for you to try:

    Why does the Emergency Department treat me like a drug seeker? http://migraine.com/blog/why-does-the-emergency-department-treat-me-like-a-drug-seeker/

    Tips and tricks for a successful Emergency Department visit http://migraine.com/blog/tips-and-tricks-for-a-successful-emergency-department-visit/

    Migraines From an ER Doctor’s Perspective http://migraine.com/blog/migraines-from-an-er-doctor-perspective/

    An ER Doctor’s Perspective: Strategies for Migraine Relief http://migraine.com/blog/an-er-doctor-perspective-strategies-for-migraine-relief/

    Migraine & The ER — A Follow-Up Interview http://migraine.com/blog/migraine-the-er-a-follow-up-interview/

    You do have options, and most doctors won’t balk at imaging with “the worst headache of your life” and that history. However, I’ve known some patients with family with them, to have family not-so-subtley urge the imaging to be done, because they threatened to contact the state board as well as potentially sue if something bad were to actually happen. I don’t want to tell you that’s what you should do, but the situation is a bit like this:

    There are too many images being done on patients to cover the docs instead of help the patients. So, some hospitals and docs are being told not to do imaging. They won’t let you go if they reasonably think you may be a stroke risk, and that might be the best thing to keep in mind.

    I’m so sorry we all have to fight like this for good care. I usually have to sign myself out AMA because I won’t do the imaging, but that’s because I know my symmptoms are worse than ever, but still my normal symptoms. I’ve had plenty of imaging done in the past and am a radiation patient.

    ~Ellen

  • #48594

    Mrs. Mahlert,
    I hope by now you have gotten some relief? Did you go back to the ER?
    I’ve always gotten better care at the ER when my Headache Specialist calls ahead and tells them to expect me and tells them what to give me. I know this is not always easy to coordinate. It took multiple trips to get a system down with my doc. I go to a relatively small ER so it’s easier to communicate information. Maybe it’s something you talk to your neurologist about next time you see him so that if you have to go to the ER again, it can be easier.

    The drug concoction they gave you at the ER is very similar to what I’ve received in the past. I’ve also gotten solumedrol or decadron instead of benadryl and found that it worked well. Sometimes if you tell them what you want (or bring a patient advocate with you, like a spouse or friend) they are apt to take you more seriously. Another med that works for some people when triptans aren’t cutting it is DHE. You may want to talk to your doctor about that as a possibility.

    http://migraine.com/pro/ergotamines-clinical-efficacy-and-safety/

    I hope you’ve gotten some relief!
    -Katie

  • #49144
    Avatar Image
    Koldeman
    Participant

    What a wonderful resource. This is my first post, but I’ll be doing a lot of reading here.

    I have been a migraine sufferer since I was a teenager- I’m 36 now. I am allergic to triptan meds so that makes it much more difficult. Topomax was an effective preventative, but the side effects of insomnia and brain drain was becoming a huge problem- and the alternative for sleep my physician wanted to try was Ambien. I tried that for a week and damn near lost my job and family…I’d do things I don’t remember doing.

    Now I’m only taking OTC meds like Excedrin migraine and they usually do the job. The frequency of attacks is about 5 or 6 a month, but I can usually control them. A strong visual aura gives me a good 20 minutes to react before the pain begins and I can usually deter it with a dark room & OTC meds.

    But there’s the occasional one that will not subside- the ones that you either wake-up full-blown with or those that last for more than a day. I was told by the physician to go to the ER when that happens- but like many of you, that can be a very unpleasant experience. We live in a small town and have one hospital. They tagged me a drug-seeker after five visits over a 2 years span, so I drive over an hour to the next town. I always have my wife drive me. This helps two-fold: she will explain the pain I’ve been in and provide a safe means for me to get home. Going in by yourself will not lead to relief, I’ve learned.

    I’m in the middle-ground where my migraines are concerned: not so frequent that they have become a chronic nuisance, but they occur often enough that I have to burden my family to drive me quite a ways when it gets out of control. I have no objection to trying new remedies, but my physician says that being allergic to triptans and avoiding something like Topomax limits my options.

    Narcotics are a useful tool and I was put on them before when I lived in a different state. I did not become addicted and they did the job well. I don’t dare say this to an ER dr or you know what they think. More unfortunately, almost all of the drs in this town are under the same system and I swear they’re trained to regard narcotics as a devil’s serum. Even when I shattered my wrist in 11 places, they were hesitant to administer pain meds “let’s try Tylenol”- are you crazy?! I understand the potential for misuse but goodness sakes! It’s a shame they don’t have the med MIDRIN anymore- those worked wonders.

  • #49151
    Avatar Image
    Kerrie Smyres
    Moderator

    Koldeman,

    Midrin is still available! It is made by Macoven and is sold as a generic. Prodrin is also an isometheptene mucate, like Midrin, but contains also contains caffeine.

    There are other non-triptan options for aborting migraines. Here are a couple articles you might find helpful: http://migraine.com/blog/migraine-management-essential-5-abortive-treatment/ and https://migraine.com/blog/how-to-treat-migraines-without-triptans-or-ergotamines/ (and part 2 of that second one: http://migraine.com/blog/treating-migraine-without-triptans-or-ergotamines/

    There are also many preventives other than Topamax, many of which have fewer troublesome side effects. These recommendations from the American Academy of Neurology are a great place to start: http://migraine.com/blog/new-migraine-prevention-recommendations-from-the-american-academy-of-neurology/.

    Best wishes in finding the right combination of treatments for you.

    • #49160
      Avatar Image
      Koldeman
      Participant

      Thank you, thank you, a thousand times thank you. I will bring this to the attention of my physician first thing tomorrow. I’ve come to find that doing your own homework is the best way to go. Drs generally mean well, but don’t always have the most up-to-date information that one can glean on their own. Again, thank you for your advice and this resource.

  • #49649
    Avatar Image
    ashdert
    Participant

    I have had migraines since I was 16. I have been on different meds most of the time imitrex will knock it out but 2 days ago one came on that was so bad I couldn’t go to sleep to sleep it off I couldn’t stop throwing up. So I went to the ER and they gave me a “cocktail” of dilaudid, Zofran and toradol. It didn’t work (there was a guy there screaming which didn’t help) so they gave me another does of dilaudid and it took the edge off and the pain to a 2. I could function with that as I am used to the pain of them. Yesterday I woke up with a migraine again and had to push through work (it wasn’t as bad as the day before) came home from work at 5pm and slept till 7 this morning. When I woke up I still have a migraine. It is worse today than yesterday and I just want the pain to go away! So today I struggle being at work today. Part of me wants to go back to the ER to try to get some relief but I don’t want them to “assume” I am a drug seeker. I just don’t know what to do the imitrex it not working. And as you all know life is miserable.

    • #49653
      Avatar Image
      Kerrie Smyres
      Moderator

      Ashdert,

      The ER has given you painkillers, which only mask the symptoms pain of the migraine, but they don’t stop the migraine. Try calling your doctor’s office to see how they treat refractory migraine. They might recommend trying a different triptan (or different delivery routes, like injectable), another type of migraine abortive (like DHE-45, Migranal or Midrin) or steroids. Many headache specialists give an infusion of a combination of medications, which can be very effective in “breaking” a migraine that won’t go away. The drugs used in infusions include magnesium, Decadron, Depacon, Inapsine, Reglan, DHE-45, Phenergan, lidocaine, propofol, Ultram, Keppra, ketamine and others. Not all of these medications are used at once! The combination depends on the particular patient’s needs.

      Best wishes. I hope you find relief soon.

      Take care,
      Kerrie

  • #53012
    Avatar Image
    jrzurel
    Participant

    I am a Registered Nurse in the ER and I see migraine patients every day. I have had the simple migraine patient to the most inappropriate patient (yelling, screaming, kicking). My ER does not mind treating your migraine every once in awhile. We get into questioning a patient when they are coming multiple times a month to the ER. If you feel your migraines are that bad you need to see your neurologist and see if you can get with a pain management doctor. The big thing that will get a nurse to roll their eyes to the back of their head is when your pain is a 10/10. Yes we understand your in pain, but 10/10 is the worse pain you could ever possible imagine. So when a patient is sitting their talking their pain cannot be 10/10. I often compare 10/10 pain as to giving birth without any medication. And by no circumstance say your pain is above a 10, that will flip our lid. And please don’t tell me your allergic to everything but narcotics, that is a sign your looking for inappropriate medications.

    In my experience the toradol, benadryl, and zofran/phenergan concoction works quite well. My wife suffers from migraines as well and has never gone to the ER. She has a neurologist and a neuro sugeron. Her pain is controlled through topamax and mobic, with the occasional muscle relaxer. I feel bad for migraine sufferers as I know they can be debilitating at times. And I wish we could get you into a room in the ER faster. But remember the ER triages people based on needs. When you think about coming to the ER ask yourself, “if my ER had only 1 bed left, would they give it to me”? That is how we think. A migraine or abdominal pain will not get you back faster than an amputation. Most of the time, a migraine patient will be grouped into a class that is non-emergent, but requiring multiple tests. Unfortunately most people in the ER fall into this category and end up waiting the longest.

    Just a hint, try to visit your ER early in the morning, around 8 or 9. The busiest times in the ER are from 2pm-11pm. So if your migraine is really intense in the morning seek treatment. Waiting till dinner time will guarantee a long wait as most people come during this time. Sunday and Monday nights are the worse, that is when the ER is usually maxed out the earliest. And please be kind to your nurses, a little kindness will go a long way. Remember we work 12 hour shifts and see the most unruly patients. I will get you a blanket, a pillow, turn down the lights, but on relaxing music, and bring you the medication the doctor has ordered, and if your still suffering after the first round of medications I will be your advocate for more pain relief.

    These are my little hints for the ER. I wish you all well, and I hope your migraines are all feeling better. I too have had migraines and I know how much they suck. Good luck to you all.

  • #48537
    Avatar Image
    mrs.mahlert
    Participant

    Hello everyone, I was diagnosed with chronic severe migraines at the age if 5, I am now 27 and they have only been getting worse.

    I have been suffering with my current migraine for 2 months now, and it’s not letting up for anything. I have tried every medication they can give me to rid this consistently relentless migraine and it only seems to be masking the pain and comes right back just as bad if not worse after 3 hours. I went into the ER which is where my doctor referred me to go in the first place. She wanted an MRI done but the ER did they only do those per appointment. They did end up doing a CT scan and said they didn’t find anything concerning. They gave me their special concoction of benedryl, reglin and toredol which on a normal day worked great for me. This is not a normal migraine and has not been for the past 2 months so this medicine did nothing to even touch the pain. They asked me how I was feeling after the medicine and I told them it did nothing for me and she came back with the response of there is nothing more we can do for you here I’m discharging you. Mind you knowing I had a migraine they proceeded to sit me in a bed in the hall in front of the nurses station where it was not only bright but also loud as hell. Thanks for a whole bunch of nothing ER, you did nothing but frustrate me and think I’m only playing a game, seriously I would love to see them go through half of the pain I am going through and not feel like they are dieing. I have been vomiting, as well as having constant pressure behind my eyes, shooting pain down my spine, tension and presure in my neck at the base of my skull, numbness and tingling in my hands and legs. I am at a loss and have more then had it with this pain. I have 2 small children I have to worry about taking care of and this is making me unable to do so properly. Any suggestions? I am planning on going back to the ER today because I am tired of being written off and of being in so much agganizing pain. This is now not only unfair to me but also to my children who have been watching me suffer.

  • #49162
    Avatar Image
    Koldeman
    Participant

    @mrs.mahlert. That’s awful! Do you go in by yourself or (on the assumption, because you are MRS.mahlert) does your husband take you? I’ve had a very similar experience going in by myself, almost verbatim from yours. The meds administered were benedryl (which I’m told helps dilate blood vessels), reglan (for nausea), and toradol (an NSAID). This can sometimes do the trick, but for really nasty migraines that hang on and won’t let up, they have in the past brought out other things like an IV drip, Magnesium, DHE45, or- as last resort- narcotic pain meds. I don’t know the area you’re in or the system your hospital goes through, but it doesn’t seem like they did everything they could have for you. Going in with a friend or significant other really helps show the sincerity of why you are there, and moreover, that you have a safe way home. At the least, my wife has had to do the talking and advocate on my behalf because I was unable. Some ERs will only do as much if they believe you are going to drive out of the parking lot after receiving treatment. I sincerely hope you get some relief, fellow sufferer.

You must be logged in to reply to this topic.

advertisement