Welcome to the Migraine and quality of life Forum
Welcome to the Migraine and quality of life Forum
My MIDAS score was 60. I feel like giving up. Tired of Drs, meds, procedures, tests and mostly pain. I’m tired of missing life. I’ve been going to a Migraine Specialist for 11 months! If my frequency has stayed the same, even if the intensity has gone down a little bit, what’s the point!? I cannot stand it.
MRSMADDOG, The Migraineurs you meet here will understand where you’re coming from. Support is one real reason we are here for you.
Are you seeing a headache specialist? Have you used a journal to identify your triggers and any patterns that may be helpful to your management? http://bit.ly/hgE7DK These are very vital things to be doing, especially if you are a chronic Migraineur.
The most important thing I can tell any fellow patient is that it is vital to have 3 things in your back pocket when you are a chronic Migraineur #1 Be a proactive, persistent patient. #2 Remember that there are literally hundreds of different treatments, and one is out there to help you. You just need #3 Patience, and lots of it. You made it through yesterday, that means you can make it through today. You made it through the last hour, or minute, that means you can do it again. So many patients miss out on good management because they give up too quickly. Even a failed attempt at a drug is a step forward, because you now know something that doesn’t work… and that is progress!
The point is, you need good management. This means you’re going to have to work for it. Sometimes that work means arguing with an unsympathetic doctor. Sometimes that work means putting a smile on your face and walking into a room of relatives who don’t understand the sheer effort it took for you to be there with them when you’re hurting. Sometimes that work means getting through the next minute, because you know that living life like it is today isn’t acceptable, so you need to get to tomorrow where something else is waiting for you to discover it helps you.
I know what it’s like to be in so much pain that living another moment is too much to bear. I’ve been where you are. You do not have to live your life like this, but to get better you have to keep trying. I know you can do it, because I can do it and I’ve seen many others do it.
Come here when you need support. Find others who understand. If you begin to feel desperate, then seek professional help… please. I don’t want to see one more patient give up on life – it is too precious. It is worth the wait and all that work to get it back. It really, truly is.
Hang in there, and know that we are here for you…
I am in the same boat. I have been seeing a migraine specialist for 3 years and started seeing another one last week. I will go for a few months and only get a few migraines that will go away immediately after taking relpax then I will get some that will last a month or more. I will get a break when I take a Medrol pack, Prednesone, or DHE but as soon as I am off the steroids the migraine starts again. I have had a migraine all summer. I have gained 7 pounds because I haven’t been able to exercise & I have basically been able to work & lay on my couch. My new doc wants me to try biofeedback (which I start in 2 weeks) and relaxation exercises. I was somewhat dissappointed after seeing this doctor. She is highly recommended & I was hoping for her to tell me “Oh, we need to put you on this med and you will get better.” Once again today I have a horrible migraine and I feel depressed about it. I have tried just about every preventative med in every combination imaginable. I’m trying to stay positive but sometimes it gets tough to do so. I have been athletic my whole life so just sitting around is not helping. Sorry for the whining. Having a bad day.
WAO618, we would all love to be put on a simple med to make us all better, but reality is that rarely works. It is usually a combination of many things that gets our Migraine attacks under better control. Are you keeping a Migraine journal yet? http://bit.ly/hgE7DK Watching your triggers?
Yes. The migraine journal has been great! My doc says my triggers are hormones & stress. I was put on a lower estrogen B/C pill this week and I started relaxation exercises this week and will start Bio-Feedback in 2 weeks (soonest I could get in). I have taken the maximum amount of triptans this week so the past 2 days I have been in excruciating pain. Today I ended up taking some pain killers that my dad had left over from his knee surgery. I just couldn’t take the pain anymore. I have basically had a migraine since the beginning of June except when they have put me on steroids. I’m doing my best to hang in there. Thanks Ellen. This website has been great. I am on it everyday.
By Teri Robert
On stress as a trigger – There’s still some controversy, but I hate to see anyone accept that stress is a trigger without at least trying to see if they encounter triggers during stressful times that they either don’t encounter at other times or they’re only triggers when the body is stressed. The International Headache Society has removed stress from their list of Migraine triggers and put it on their list of exacerbating factors — things that make us more susceptible to our triggers. I’d have sworn stress was a trigger for me until I kept a very detailed diary for a few months. More information in Is Stress a Migraine Trigger? at http://www.healthcentral.com/migraine/c/8937/12001/stress-trigger/. I hope you’ll thoroughly investigate this as I think we do ourselves a real disservice by thinking stress is a trigger for us and not looking closely for other triggers during stressful times.
Wonderful explanation Teri 🙂 Thank you!
I am sorry to hear about your headaches…My wife had nerve decompression surgery with Dr. Guyuron in Ohio. I would highly recommend him for patients who have lost all hope. He has given my wife her life back after 20 years of debilitating migraines. Insurance even covered the procedure for us. Even if it hadn’t, I would have paid for it. If you want to see the details, look up our story at the link below (I’m Gregory Miles on there)…there are details about our experiences and answers to many questions you might have. My wife, having seen the benefits (and having spoke with or met over 50 other success stories, wants to help as many people as possible.
It’s serious when patients become desperate from the pain and disability of Migraine attacks. It is vitally important that we all remember that there are so many medications to try that it is nearly impossible to try them all in a single lifetime. Surgery carries with it no guarantee other than your body will from that point on be altered. This is fabulous news when it works, but are there other options that should be investigated first? Is it the best option? Clearly there are many patients who may not respond as they had hoped to this or other surgeries. I am sooo happy that your wife was able to get her life back as a result of her choice to undergo the procedure. My fear is for those patients who mistakenly think this is their last option and try the surgery and do not have her success. We all must have hope for a light at the end of the tunnel. I am so grateful to Dr. Guyron for this procedure as it gives many of us the hope that we need, but everyone needs to keep in mind that nothing works for everyone. Patients should always educate themselves before making an irreversible decision such as surgery.
I would advise you take your own advice and actually educate yourself about a procedure before shooting it down and scaring people away from it because it seems extreme and you are not familiar with it. This is a legitimate treatment that presents hope to thousands of people when everything else has failed…if you don’t believe that undergoing surgery is worth it as a viable option for migraine relief, then you clearly don’t suffer from migraines severe enough to drive a person to this level of desperation…for that I (and I am sure my wife who underwent the surgery) am envious of your situation. Dr. Guyuron doesn’t cut you open the minute you get there…he does his due diligence….he is an expert in the field and will suggest other options including botox when the surgery is not completely necessary. Keeping people in check and telling them not to think that there is answer out there is an excellent way to keep people suffering and continuing to visit this web site rather than trying to find new ways of fixing this horrible issue. As for not being able to try every medication in a lifetime, you must not be aware of the fact that many patients cannot even take certain medications for a plethora of reasons (due to allergies, heart related issues, etc.). These kinds of issues may keep a patient from using a regular course of treatments. For example, had you read the story on the link I posted, you would know that my wife is allergic to Triptans. That cuts out many possible forms of medication. She has gone as far as to be treated as an in-patient in a headache clinic – with no success. She, having to live with this particular ailment, has said herself that there is no particular cure, but given the circumstances and the outcome and knowing how hard this was, she would do this again in a heartbeat, even though it took 3 operations and 6 trips to Ohio to finally resolve everything, because now she’s finally able to wean off her preventative medications and we are looking forward to the day that we can start a family (something that wasn’t a possibility before). While we appreciate your input, all we are trying to do is give people alternatives and maybe a bit of hope. I think everyone has suffered enough, don’t you?
By Teri Robert
I think you’re reading too much into Ellen’s comments. I have studied Dr. Guyuron’s procedure carefully and have corresponded with him. It is a good option for some Migraineurs, but it is not for everyone. It is an option for only a subset of Migraineurs – those for whom Botox works.
Ellen wasn’t saying not to not consider it, but to study it carefully before committing. Medications can be discontinued. Surgery can’t. She is quite right that with over 100 medications in use for Migraine prevention alone – so that doesn’t include drugs such as the triptans – it would taei 25 years of trying a new one every three months to have tried them all and given them a fair chance. Dr. Guyuron would back us up on this, by the way.
There is no one solution for everyone. I’m thrilled for your wife, and glad you’re sharing with us. But please read what we write carefully enough that you see what we’re really saying and don’t read in negativity where none is intended.
With all due respect, I think you need to re-read my response. Sadly, you’ve assumed an enormous amount of negativity that simply is not there. Advising patients to take care is not shooting any procedure down. What works for one simply is not going to be the answer for another.
This procedure offers SOME patients what they cannot find elsewhere. As I said, this is a good thing. However it is not for everyone, and making it seem otherwise is unfair, even dangerous. Surgery should always be the last option.
I simply urge all patients to exhaust all other means of possible treatment before assuming they will be magically “cured” by a surgery that will permanently alter their bodies. There are very real risks here. Anyone who tells a patient otherwise is dangerous. There are no cures for Migraine. Plain and simple.
PICKLESTHEYORKIE I know from whence I speak, as I was desperate. Those who read my articles here know I too am unable to take not only Triptans (which are not a preventive), but an enormous number of other medications due to other medical problems. I gave up my career and nearly my family, home and everything else that made me “me”. I was bedridden. I had surgery that did nothing but make my situation worse. Thankfully I knew that my procedure may not work because I had a good doctor who was honest with me, and other faithful and educated patients from which I was able to learn what to expect. I did my homework. It was a risk I had to take, but I did it with my eyes wide open. Had I been misguided by another patient or their family member to thinking this was my best and last hope, I no doubt would have given up long ago. Desperate Migraineurs can only bear so much, and we must live with hope.
Who knows? Maybe this particular surgery will one day even help me too. Maybe it will lead to further research. I am so thankful that it is there as a potential option. Options mean hope, and hope keeps many of us alive. I pray I never have to take that step, but if I do, my eyes will be wide open because I looked at both sides of the picture – equally.
These forums are designed to give Migraineurs and their loved ones a place to talk frankly and openly about Migraine related subjects – this subject is Quality of Life. We do encourage members to speak their minds in open conversation and appreciate you wanting patients to know about the surgery that was so successful for your wife, but we expect members to do so in a positive manner that is respectful of all. Migraineurs often become desperate enough to complete suicide, and as a leader in this community and others, my goal is to make that something of the past. Only good education, open discussion of BOTH pros AND cons as well as realistic expectations will make that come true. Making assumptions about anyone or any treatment only hurts us all.
by Lois Pagel Clauss
No matter how you encountered your first migraine, your life is now filled with migraine emotions. These emotions can be related to how you first realized or were exposed to migraines but none the less, there are many emotions related to them.
I had to come to terms that I actually had migraine emotions. When you are first dealing with migraines, it is difficult enough to deal with the symptoms, the triggers, the medicines, etc. that you overlook all the other emotions that you are dealing with and how they might actually affect your migraine. It took me a long time, really only just recently, to realize that I express and suppress many emotions that go along with my migraines. My migraine experience started from a car accident. It took awhile until I was diagnosed properly and then another extended period of time until preventative, as well, as migraine medication that was correct for me was chosen. Along with migraines, I deal with daily headaches and neck pain and in the beginning it was difficult to distinguish the type of headache I was experiencing.
Anger was the largest emotion that I had to come to terms with and I still deal with during an extended migraine episode. This is the emotion I try to suppress the most and is the hardest for me. Fear was an initial emotion when the diagnosis was still up in the air. Was it migraines or was something more serious wrong with me? Sadness and loneliness creep in during an extended migraine episode as I remove myself from society in order not to affect others emotions.
As your mind is reeling from the migraine pain itself, it is hard to delineate and accept all these emotions that you are dealing with. I find trying to clear my mind and concentrate on just getting over the migraine itself, helps to break the pain cycle faster. I try to deal with all the other emotions of the migraine while I am migraine free. It is a long hard road but baby steps are always the best way to start.
You really hit the nail on the head here. Like you, an especially painful or long Migraine attack will make me uncharacteristically moody. I don’t mean to be that way, but my usual patient self just isn’t there. I do get angry too. Especially angry. I’m mad that I have to be in pain. Mad that nobody understands. Mad that my life sometimes doesn’t seem like its mine anymore. Mad that I can’t have everything the way I need it. It all piles on and is a really good set-up for depression.
Depression doesn’t hit me often, but it does happen. There are things we need to try to remember re: emotions and Migraine. For example:
Serotonin plays an enormous role in our emotions and in the Migraine process. (see this post on neurotransmitters http://bit.ly/nhd3gl ) That emotional rollercoaster? It can be a sign that serotonin levels aren’t where they need to be and a Migraine is the result. The reverse can also be true.
When our Migrainey friends are suddenly acting out in ways you’ve never seen them act before, consider that they are being driven by their pain and the neurotransmitter imbalance that is likely also driving their Migraine attacks.
We would all like to think that we will never let our emotions get the best of us, but in the end, we are only human beings. We can only stand so much. The key I think, is learning that this is part of our disease, and figuring out the best ways of dealing with it in our day to day life.
For instance, what do you do when you feel angry and you know it is related to your Migraine attack?
What would you tell another patient that might be helpful to them if their emotions are getting the better of them??
I am not actually sure where to place this, I am new to this site, not new to migraines. They have recently gotten 50 times worse in the past year over all and really worse in the past 6 months. but I have lived with them on and off since I was 16 (now 33) My grandfather and mother both have had them.
I am at my wits end! Headaches everyday and there getting worse, although I haven’t had any of my “attacks” that I call them but I felt a mild one tonight. These “attacks” are sharp, sudden and give me stroke like symptoms. I look like a freak when I have them and I am a Single Guy thats, well I guess I am rather attractive, but these “attacks” make me look ugly! Not a clue what triggers them they usually last 5-20 minutes and not even the best narcotic out there would take the pain away. They are beasts! Afterwards I am left with a MASSIVE headache worse than a normal day. Any normal day, ill have a headache all day long and have to take Fiorcet every 4 hours and believe me, I keep a close eye on that clock! Right now I have a job but I do not have insurance so I pay (or I am having help by loving family members) all out of pocket for doctors vists and all medications. I don’t know what else to do, I feel guilty for having family spend there money on me.
Any suggestions or should i consider this a hopeless thing that I need to accept for the rest of my life?
Thanks in advanced and thank you for this wonderful site!
No! Never consider this hopeless. There is always hope, professionals are still researching and finding out more about migraine every day. Maybe since your migraines have changed it is time to consider changing medications?
I understand the emotions you are going through, even looking in the mirror and thinking how ugly I look but I have recognized most of this is from the emotions caused by the migraine process. On days like this I avoid mirrors and try to focus (as much as I can focus) on something pleasant and tell myself this too shall pass.
You are very fortunate to have family that is supportive. Hang in there.
PHILIPTERRY – I am so sorry you are suffering like this. Fioricet is notoriously bad for causing Medication Overuse Headache, and I am worried that you are taking it so frequently. Doctors now think this can eventually lead to chronification of Migraines, making an already bad situation worse. Can you get to see a headache specialist?
Jody is right – there is always hope. Especially when I see patients on old meds like this I have hope for them as there are so many options out there and others coming down the pike.
Hang in there…
Hi all. Sometimes depending on how bad the migraine is I do my best to trudge on through my day and act as if nothing is going on. If it’s bad, I leave early doing a half day. Sometimes I do get angry and depressed as well and feel like giving up too.
rilniski – Please don’t feel badly about your reactions to living with Migraine. This is how you have chosen to cope with an unimaginable situation. No one comes out of school thinking… “I think I’ll be chronically ill and mess up my life with a disease for which there is no cure.”
Being angry and depressed is a normal response to a frustrating situation! The key is how we deal with the cards we are dealt. This means we make choices.
Here’s a post I wrote last year re: the stages of living with a chronic illness…
Choosing Forgiveness – the Eighth Emotional Stage https://migraine.com/migraine-and-mental-health/eight-emotional-stage-of-living-with-migraine/
My quality of life has plummeted since the migraines, to the point where I am reluctant to plan even getting lunch at Panera Bread with a friend because I am worried I might have to cancel that day if I have a migraine. If I’m at work, I will do my best to fight through it until I am at the point where it is getting unsafe for me to be driving home by myself. Crazy huh?
I guess I think that if I go home and lie down in bed, then I am not mentally strong. I still think of migraines as being something that I have to fight by toughing them out. I feel guilty when I give up for the day and curl up in bed with my teddy bear. And yes, at 28 I still have a teddy bear.
MsMillie – My teddy bear is my kitty named Rags, lol. You’re never too old for comfort things like soft blankets and putty tats 🙂
Please, do not drive when you are Migraining. Here are a couple articles about it:
Can I drive with a Migraine? https://migraine.com/blog/can-i-drive-with-a-migraine/
Driving tips #1 https://migraine.com/blog/driving-tips-for-migraineurs-part-1/
Driving tips #2 https://migraine.com/blog/part-2-driving-tips-for-migraineurs/
The truth is, toughing out a Migraine can actually be detrimental to us. Treating early and aggressively is usually the recommended way to treat a Migraine attack. The more attacks we have that aren’t properly treated, the worse our Migraine disease is apt to progress, until eventually we end up in the chronic Migraine category https://migraine.com/migraine-basics/chronic-migraine-overview/ and potentially even disabled by Migraine. Central sensitization and allodynia can set in, and that doesn’t bode well for us. https://migraine.com/blog/migraine-allodynia-and-central-sensitization/
But here’s the tough part – the very treatments we take for our attacks can also help lead us into chronification of our Migraines, as well as end up causing a whole other headache disorder called Medication Overuse Headache. https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/
It is comforting to read this thread as a lot of the thoughts and feelings mentioned really resonate with me. I have had chronic migraines for 7 years now (episodic before), and right now they are worse than ever before. I am also dealing with depression and an anxiety disorder. When I reach a level 7, 8, 9 or 10 pain I am pure panic, not wanting to exist anymore, wanting to leave my body. It’s not that I want to die, it’s just that I can’t fathom living out the rest of my life like this, or at least with this pain constantly interrupting and dragging down. Between attacks (usually 24-48 hrs breaks with low pain) I feel like I am running out of time, trying ot do everything and live as normally as possible, in fear of the next attack. It is really hard to come to terms with. I look around me at all the healthy people, and I am jealous of them. Will I ever be able to experience life again like they do? Or will it always be veiled with pain? How will I ever be able to get through pregnancy, have a child, be a capable parent, wife, and have a career of some sort? It all seems so unattainable. It’s hard to find the hope and motivation in the pain ridden life.
larissataurins – There are so many preventives that may be helpful. So many different doctors that might be helpful.
First, are you seeing a headache specialist? You can find one here: https://migraine.com/blog/looking-for-a-migraine-specialist/
Are you seeing a psychologist to help you learn coping mechanisms for the depression and anxiety issues?
There is always hope! The key is looking at this in tiny baby steps. You made it through today. That means you can make it through tomorrow. You made it through the last minute. You can make it through the next. If you can make even the tiniest step toward better management, then you are headed in the right direction. Even a medication failure is a step forward, because you now know something that won’t work for you. You have ruled it out. That is progress.
I’ve had migraines for more than 6 years now and have seen a complete shift in my quality of life. It’s bad enough to have migraines 20-25 days out of the month, but on top of that, my energy, memory, and overall social life have diminished.
For days after a particularly bad migraine my energy level stays at zero and I’m in a pretty scary fog. I tend to forget what people tell me, zone out, and even have issues coming up with words. So even on days when I don’t have severe head pain, I’m still not leading a “normal” life. I’m 23 and would really like to feel like it!
I’ve seen many neurologists, had many diagnostic tests, have tried over a hundred medications (preventative and abortive), and tried different alternative treatments but no luck yet. Does anybody have any advice?
I have no quality of life. I suffer daily chronic migraines. I have them 24/7. I have had the migraines for about 6yrs and chronic daily headaches for about 20yrs prior to that. I am tired and in lots of pain all the time. I never hardly go out. Have no friends. Struggle to watch tv, read or go on the computer. I have a very full on 3yr old boy and a 17yr old girl. I dont work at the moment but the last 3ys of work were a living hell as I went to work everyday in severe migraine mode. My hubbie and kids don’t deserve what I put them through on a daily basis. It is very hard to look after my son and run him around all the time to kindy and special school. My hormonal migraines each month flatten me but I still have to get up each day and do everything. I never get a chance to rest until night.
lhicks10 – There are a few things to consider here. The first is the number of preventive treatments you have tried. Since it would actually take at least 25 years to try them all, I’m concerned that either you have not given all of them a sufficient trial – which usually takes at least 3 months on a single active dosage – or that you have missed out on a lot of potentially helpful preventive therapies. 300 months is 25 years, and that would be assuming you started the dosage out where it needed to be to be effective, which is very rare indeed.
So, that leaves me wondering if you are seeing the right kind of doctor that would know these kinds of things and be able to help you with them. Most people assume that a neuro is your best bet, but if you have Migraine or headache, that is often not the case. We usually suggest that you see a specialist that deals only in Migraine and headache disorders, day in and day out. Here is a link that talks about the difference between a Migraine specialist and other types of doctors. https://migraine.com/blog/how-are-migraine-specialists-different/ And here is a link that gives many options for finding a good specialist: https://migraine.com/blog/looking-for-a-migraine-specialist/ Not sure if it’s really time for a new doctor? Here is a post that helps you to decide: https://migraine.com/blog/is-it-time-for-a-new-migraine-doctor/
Diagnosing Migraine isn’t as easy as one would think. The reason is that there is not a test FOR the disease, we have to look at symptoms and then rule out other treatable conditions. This means a lot of testing as you have experienced. https://migraine.com/blog/diagnosing-migraine/
Because comorbid conditions can have a nasty impact on Migraine, you need to be sure your overall health is in top form. Here is just a partial list of some of the comorbid conditions patients that visit Migraine.com often have to deal with: https://migraine.com/?s=comorbidities Diagnosing and treating these comorbidities is often key to getting better control of our Migraines.
garfieldrules – I too became chronic when my kids were little. I used to really beat myself up with feeling guilty that they didn’t know what it was like to NOT have a mom that was sick… all the time. Here’s what I learned:
Migraine is considered to be genetic in nature. This means it is very possible that your kids may have inherited Migraine and may have to live with the condition themselves. Children learn what they live. I know from experience this is an awful thing to even think about, but it is also a great opportunity, not only to teach them about how to treat others who are sick or not feeling well, or are just different, but it also teaches them how to be a good person despite living with pain and disability.
Nothing about Migraine is fair. Nothing. It carries with it stigma, pain and a whole bowl full of other *wrongs*. Nevertheless, this is our life. We have a choice. We can live our best lives, making our existence an example and a lesson for others, or give in and let Migraine take control.
Most of us eventually come to the point where we demand control over Migraine disease, but it can take a lot of time. Living with Migraine is a lot like living through the grieving process. I wrote about it here. I hope it is a post that will speak to you and anyone else reading this that feels the guilt of being chronically ill.
The reason I’ve tried so many is because I am extremely sensitive to medications. Many times the side effects from the meds are just as bad or worse than the migraines themselves. I’ve also found I’m allergic to quite a few medications. I’ve taken so many not because I get impatient or bored waiting for them to work, but rather my body cannot handle me being on them.
Besides migraine, I am in great physical condition. I’m an athlete and eat fairly well. Along with all the diagnostics like CT, MRI, etc, I’ve been tested for many other comorbid diseases or disorders but all have come back negative.
Thanks Ellen for your kind support. I will certainly have a look at the information you have supplied. Its hard here in Australia there is simply not alot around for migraine/headache sufferers in the way of help. We don’t have headache clinics like in the US. We don’t even have forums like this.
garfieldrules – Well then, we are very happy you found us. I hope we can offer you some kind of support.
I understand the sensitivities. The thing is, often starting out much, much lower will help with those sensitivities. Doctors too often start us on whopper doses that we can’t handle. I rarely start anything out at the *normal* starting dose, but cut it back at least in half, and try to take multiple times during the day to help eliminate fluctuations. Just a thought…
Good luck and ((Hugs)) from across the equator!
I am new here, and after 7 years of migraines, today was the first day I thought to look up a support group. I’m sure glad I did because it makes me feel so much less alone just reading all of your posts.
I am 25, live in the city with my boyfriend, and work at a law firm. I dance, cook, bake, read, and knit (when I am able to). People that look at my life think that I “have it all” and that I have nothing to complain about. But the truth is, I have I nearly constant migraines. I wouldn’t call them severe, because I don’t vomit, and I can function through the day if I need to. However, they are INCREDIBLY persistent. Maybe one or two okay days per week, and when I say ‘okay’, I mean that the feeling of a headache is always looming. I become sensitive to light, feel really nauseous, and of course the ever present pounding, tight pressured head. Trouble is, functioning through the day “when I need to” is basically every day. I work a second job on weekends (two Saturdays per month). After work sometimes all I want to do is sleep, but I end up just laying there in pain, unable to sleep, with nothing to distract me. I often have to FORCE myself to go for a walk or go out to eat with my boyfriend, just so I don’t feel like all I ever do is work and lay down.
Anyways, I am so weary of feeling so alone in this. Family and friends always ask “how’s your head?” and when I respond “so-so” or “really bad today” they say “aww, sorry” and that’s it. They don’t understand, so I can’t blame anyone for not saying more. I cancel plans frequently and refrain from making solid plans often because chances are, I’m not going to feel up to it that day.
I love dancing more than anything but I find if I do go to class, I’m always drugged up on T3s trying to control the pain, and I end up spending the rest of the weekend in bed because I pushed myself too hard.
I should stop now because I’m rambling….although I could say a lot more.
I hope that I will be able to chat with some of you and we can have a mutual understanding of each other’s pain and suffering.
You and I talk on Facebook and I’ve told my story but I will tell it again.
I’ve been having Migraine’s since age 6 and I’ve been through almost every
damn pescription on the market~ my headaches laughed at OTC early things
like Bufferin,Anacin,Bayer Asprin they weren’t strong enough to dull the
pain of a Migraine.
My first perscription drug was 5MG pink Darvon.
Which did nothing really to dull or take away the pain.
I was perscribed 1 5MG tablet for each time I had a headache.
This was doubled and I still was screaming from the pain.
As I got older my headaches got worse as I reached puberity.
True story,my mom used to have to put a sign on our door
that read “DO NOT RING BELL,PLEASE KNOCK, THANK YOU”
I couldn’t stand the sound of the doorbell or phone ringing.
I was on Darvocet the next drug to try to tackle my pain.
This was around the time I tried regualar Excedrine.
No,luck with that.
then along came Extra Strength Tylenol.
That was a life saver for a really long time.
I know that it’s not suggested but I was taking 4 500MG pills
at once to kill the pain of a really bad Migraine.
I’ve also had Percodan & Percocet without very good results.
One thing that has worked is Fiornal w/Codine
What I’m now is Treximet, 1 85Mg pill to ward off a headache.
Another thing that in my book is a complete life saver is
Excedrine Migraine!! Thank God to the person who came up with this.
My neurologist would give me full sample boxes of it when it first
came out on the market!!!
Now I’m also on Hydrocodine/Vicodine incase I really need it.
My “Trigger” is all weather realted problems
I had to move out of NEW YORK,just because I have such
bad sinus problems and get almost daily headaches.
I can’t really work,hate not having a “life”
I’m 59 and am going to try Botox to see if I can get some relief?
Also,I have a pair of Aviator sunglasses that are triple coated
and if my husband sees them on my eyes inside he knows I’m in
real Trouble and just let’s me sleep.
By Nancy Harris Bonk Moderator
I’m not Ellen but did want to respond to your post as she is out of town this week. I hope that is ok. I’m sure she reply once she has a chance to catch up!
That’s great that you know what a few of your migraine triggers are. Have you kept a migraine diary recently? Here’s why I ask? As we age, our migraine patterns and triggers can change along with us. To identify these changes it’s a good idea to keep a detailed diary and see “what’s up” so to speak. There are plenty of apps out there now to do this, and you can always use pen and paper too. The Migraine Meter from Migraine.com is one such tool and you can see that in this link; https://migraine.com/migraine-meter/
The other thing I noticed is that you’ve only mentioned pain relieving medications until you spoke about Botox. Have you ever taken anything for migraine prevention before? When we have three or more severe migraines a month, it is time to talk to our doctor about migraine prevention medications. For more information on this you can see it in this link; https://migraine.com/blog/migraine-management-essential-4-preventive-treatment/.
If you’ve gone over all this with Ellen before, please just ignore it, if not, happy reading!
Let me know if you have any questions,
By Chris Hicks
Hello to the group.
Another weekend starting with a migraine. I woke up this morning with the same migraine I went to bed with last night. This is something like day 12 with migraine. Out of these last 12 days I have had only one morning where I awoke migraine-free. Since this is the Migraine and Quality of Life thread please allow me to speak to that just a bit.
Basically, chronic migraine has taken my quality of life “score” and pulled it down pretty low. I have a wife, four wonderful sons and hold down a full time job. It all seems pretty nice on the surface. My wife is great and my kids are wonderful. My coworkers are good people and the work I do is challenging and rewarding (I work in healthcare, as an analyst and consultant). Slipping below the surface of all this one quickly sees the dark under-current of migraine. Migraine makes my time at work, often, a chore and something I “get through”. Then I return home, my sanctuary, where I frequently battle to be present with my family despite the migraine. I sometimes feel as though I am a passive observer, watching through the pain, my life pass by as I am trapped inside a migraine.
On the flip side of all of this darkness I can honestly say that migraine has taught me an important lesson. Each moment is precious. I have learned to be present, as much as I can, in the moment. When I find pain-free time I try my hardest to be in that time, to enjoy wherever I am at and whomever I am with at that moment. When these rare opportunities arise at home I enjoy my family to the fullest! At work I also try to be fully present. I have noticed one obstacle to being fully present during these wonderful times is this… Because so much of my time is lived from a state of pain, due to migraine, when I have a moment(s) of pain-free time I often feel overwhelmed with all the things, and thoughts, that I cannot normally fully engage. I sometimes feel a wave of possibilities wash over me. I am overwhelmed with all the things I want to do (but do not normally get to do because of migraine). Sometimes there is so much I have to stop and try to slow down and pick just one thing. It is similar with “thinking”. It may sound silly, but I get super excitied about lots of ideas simeltaneously and that quickly becomes overwhelming and I go into a kind of mental overload. I have to slow myself down and try to focus on just a couple of ideas or thoughts.
Because of the chronic state of my migraines such times are rare. I will say that the Botox injections have increased the frequency of my pain-free time (although I am at the tail end of my last Botox injection “good times” so I am falling back into more frequent and intense migraines). Having more “better days” has helped me to adjust better to feeling good more often. I do not seem to be as overwhelmed anymore.
The bottom line as far as quality of life goes is that chronic migraine robs one of much quality. A choice can be made to appreciate the good times, and in fact there is a deeper appreciation of the good after so much bad. That does not, however, remove the bad, nor does it bring back the quality lost to migraine. I try not to dwelve or focus on the bad, but I cannot deny it either.
As I sit here with another migraine all I can say is that migraine has robbed me of another moment. The birds are singing, the sun is shinning through the window onto my back and it is a nice moment. I experience it through migraine, which makes it less “nice” for me.
I too feel like my migraines have taken a lot of the joy from my life, and I am now constantly afraid of what more they will take from me. My job? My husband? My home? I am sure that worrying over these things that are yet to come is causing more harm than good, but it can be hard to turn off my mind. I struggle every day to do what used to be easy, and that struggle wears on me. At the same time, I am supremely grateful when I do experience those rare pain free days,hours, minutes. I went swimming a few days ago for the first time this summer, and I was so glad just to have that moment, floating on the surface of the lake, being able to enjoy a beautiful sun setting behind the ridge. And best of all, being able to enjoy that time with my very patient and loving husband, who is my best friend. I guess, for me, like all of life’s struggles, I have to just keep reminding myself that I wouldn’t be who I am or where I am without migraines, and despite the fact that I long for pain free, clear thinking days, I AM okay, in fact happy, with who I am.
By Nancy Harris Bonk Moderator
I’m thrilled to hear you had pain free time and were able to enjoy it with your husband. Quality of life issues can be difficult when we have migraine disease due to it’s ebb and flow nature. This week has been extremely challenging for me, but as I keep reminding myself “this too shall pass.”
By Nancy Harris Bonk Moderator
UGH! Another morning with a migraine. Sometimes when I have a migraine in the morning it takes everything I have to “enjoy” the birds…..
Have we talked about having a sleep study? If not that may be something to consider because many times when people wake up with a migraine sleep issues may be contributing to the problem. I do have information to share with you on this; https://migraine.com/blog/migraine-triggers-sleep-1/.
Sorry you a having a rough week. Wish I could do something for you. I am not too hot either. Can’t wait until I see a Dr that knows what they are doing.
By Chris Hicks
“This too shall pass…”
This is, at times, the slogan I live by. This morning it is very much part of where I am at. I sit here at workk with a fairly significant migraine. It is not top-of-the-chart severe, but it is pretty darned painful.
Starting the week like this just plain sucks. I know, that as I approach my August 20th appointment for my third round of Botox injections, I should expect the migraines to increase in frequency and intensity (following the pattern established after the first and second round of injections). The good thing is that this is an increase, which means there was a decrease!
It is sometimes hard to focus on the positive, especially when I am in the middle of a significant migraine event. It hurts to see light, it hurts to hear sound, it hurts to simply “be”.
This too shall pass. I will make it through the migraine and I will have time I can enjoy. For now I have to endure. I have to breathe and seek a calm place in which I can weather this storm of pain.
Today’s quality of life (QOL) score is low due to migraine.
By Chris Hicks
To all who have posted here and shared and encouraged… I want to express my deep gratitude and thanks to all of you! This place, this group, is such a blessing!
Chris, Thank you so much for enriching our community with your presence and support. Taking the time to post to help someone else is so selfless, and so very helpful…
By Chris Hicks
There are dark days, to be sure, in this journey with chronic migraine. There is, however, light too.
If you were to push me I guess I would call yesterday a rather dark day. I spent the day at work , fighting my way through a pretty intense migraine. There were moments, like meeting my seventeen year old son for lunch, that were better, if not pain-free, than other moments. Overall, the day was a painful struggle. If I look backward for such days I can find many, many like this in my memories.
I choose not to look backward, or forward, for days like yesterday. If I were to live like this my quality of life would indeed be very low. Instead I try my best to look for the positive days, the positive moments. I try to have an outlook that gravitates to the light and not the dark. Don’t get me wrong, I do not always succeed in this quest. I can be walking just fine and suddenly look down to see that I am stuck, knee-deep, in dark mud. “How did that happen?”, I might ask. And then I will realize that I got stuck on some negative point along my day.
When I think about quality of life I can get caught up in trying to count all of the things I am “supposed” to do in my life. Usually this kind of list is based on stories from friends, family, people at work as well as things that the media pushes our way. But, in moments of clarity and true understanding, I realize that quality of life is nothing more than being present in each and every moment, and enjoying to the fullest as many of those moments as I possibly can! At the height of this Buddhist approach I can even have an appreciation of the migraine. It may sound silly, but I can acknowledge the brutal effectiveness of the migraine. “You are very good at what you do”, I might say to the migraine. It is a shame that what it does is inflict such pain.
So, quality of life is not a comparison of what I “do” to what others around me (or in the media) do. Rather, quality of life is being present in my own life, in my “series of moments” experienced as one single moment at a time, the now. This quality of life includes moments of pain, sitting quietly or resting in a dark room. This quality of life includes “small” moments of pleasure, like ten minutes of pain-free time spent with family, or entire afternoons without migraine spent at work or with friends. In a way, quality of life is more about focus than anything else.
Chris, I really enjoy reading your posts and I can relate to them. Thank you. I like what you said in the last one about not comparing yourself to the expectations of society, but finding the positive where you can. Easier said than done, of course, but helpful.
I have recently been struggling quite a bit because I have had one of the worst years in my life in terms of migraine due to a severe flare up, as well as a depressive episode in the winter. Continuing anxiety disorder. To top it all off, and I can’t really believe this is happening, but my husband has come down with chronic headaches in the last 6 months. He never had headaches previously, and now he is getting more and more disabled by them. It is scary to think about how hard things could be for us if his headaches continue or worsen – we depend on him being able to make an income and be the ‘able’ one. It’s just too much.
I could have sworn you were describing ME. My migraines started 6months, and I did the same as you I really thought I could just power through them. I feel embarrassed to even talk to people about how I feel. Over the last six months the severity of my migraines has turned to Chronic Migraines. When my Dr asks how many headache day did you have since last month, I answer with how many migraine FREE days I had. This last month it was 3 days in a row and it was like waking up from a fog!
I am now focusing on my health. Per my Dr advise I have taken a leave from work. Work caused a lot of stress for me because I have become unable to perform my job. In turn causing more migraines. I am careful who I talk to about my health, because no matter how much I tell my self I should not be embarrassed.. I still am.
I am full of hope and I plan to eventually get my life back. I know from reading others posts this can be a long road with a lot of bumps along the way, but I am determine!
By Chris Hicks
A long overdue update…
I am having a “new” MRI done this afternoon. This is one of the requirements to enter Dr. Joel Saper’s inpatient program for migraine in Ann Arbor.
I have an outpatient appointment at the Michigan Head Pain and Neugological Institute on Friday of this week. I will be admitted to the inpatient program on either Sunday or Monday of next week.
I remain hopeful that this program will help to get the migraines in a better state of management.
Might as throw my hat into the ring. I made an account a while ago, and finally decided to share my story I have been getting chronic migraines for over 6 years, and severe daily migraines for the past 3. I wouldn’t call my quality of life ideal, but at the same time I go by the saying it could always be worse. I treat my migraines each day like a competition if I lay in bed or my attitude changes then the migraines win, and I’m not about to let that happen. I’m setting up for my 14th neurologist, and though I don’t expect much I’ve in a crazy way learned to live with this living prison of pain, and at the same time maybe I was meant to suffer so that I could teach others how to live through their greatest enemies and ailments. The suffering as actually made me into the man I am today, so in so me sick way I actually owe them something. Just never give up hope, and always remember that no matter how awful the pain is the human body can overcome incredible pain if you just are willing to let it. Never give up, never surrender haha.
kadease24 – Thank you so much for your reply here. It was just what I apparently needed to hear tonight. I am always so inspired when I hear of anyone having success, no matter what form that success might take!
Glad I could help and a little update. My neurologist suggested that I go to the Michigan Head Pain and Neurological Institute, but my insurance was out of coverage, so they were only going to help pay part of it. My friend recommended I do a fundraiser, and we set a lofty goal of 5 thousand in one month. We are now 10 days into the fundraiser and at almost 4 thousand thanks to my incredible friends, family, and also the kindness of total strangers. I know how hard it is to ask for help since our fight is one only we can do, but don’t be afraid to let people help you. If y’all want I can post the fundraiser link. My best friend who had the idea donated a thousand the other day, and I was on the verge of tears, but at the same time I am terrified because there is still only a 50 % chance they can help me, and the guilt I will feel if this doesn’t work will be indescribable.
You are obviously very blessed. I’m so glad you have this to help you get to the clinic.
PLEASE understand that treating this problem is an ongoing issue. It is time consuming and a struggle, but very well worth it. Going to the clinic is not your end goal. Getting better is, and that is the investment your friends and loved ones have made… in you. Don’t feel guilty if you don’t miraculously get better in one or two visits. There is no cure for us yet, and it’s unfortunate for all, but it doesn’t work that way. But this is an AMAZING start and I’mm so proud of you and the people you have surrounded yourself with. You are inspirational. I just don’t want you to get discouraged and I do want you to understand the nature of the *beast*. The clinic you’ll be going to is fabulous, and they are relentless.
I am curious – why do you make the statement that there is only a 50% chance that you will find help there? Generally doctors have the goal of a 50% improvement to consider a treatment really successful. However, there are so very many different treatments to try, both singly and in combination. Not everyone responds to preventive medicines, but there are other treatment options. A good doctor won’t give up on you and tell you to learn to live with it. The good ones are willing to keep working with you as long as you don’t give up.
We’ll be standing with you on this, and hope that you’ll let us know how your journey progresses…
After 14 neurologists, 25 different preventative meds, 15 high level opiates, and 15 treatments(trying everything outside of surgery) I definitely understand that this clinic will not cure me nor am I expecting immediate results, but if it can just give me one day per month of rest with no pain I would call it a success. I know I shouldn’t feel guilty that my friends and family are willing to offer their money to hopefully open up a door that will change my life , but that is just who I am I hate asking people for help and hate even showing any weakness that the migraines are actually affecting my life.
The reason I put a 50/50 shot is because 6 years of countless trial and error with nothing ever really helping is hard to shake out of my mind. I will always hold out hope and I’m a master of finding the silver lining in everything no matter what the outcome, but at the same time I have to prepare myself and understand that just because this clinic is incredible doesn’t mean they have the answer or relief I am looking for. If I went up there expecting and assuming that because they are the best they can cure me or give me the relief I want then I go up there, and they are unable because as y’all know migraines seem to adapt as we do like a living being that just lives to make us suffer, then I would be absolutely devastated and have my spirit crushed along with my hope. That is why I go up there praying, hoping, and ready to get exactly what I need, but at the same time I know that it might not, and that is something I have to be ready for as well.
It also scares me that if I go up there, and none of the treatments work considering they will have the newest and best treatment options they can use then what will my next step be, and the waiting game while clinging to hope will begin yet again. Overall that is what terrifies me because although I hate to admit it I’m exhausted and for once I am losing this war no matter how I look to everyone else it is really starting to affect me because no matter how much support my family and friends give me in the end it as a war I must wage alone both with my mind and my body, and each failed med, lost job, lost relationship, ect makes my war that much harder. I apologize for the novel I guess when my mind starts going, so do my fingers and I just type, so thank you for your kind words and understanding.
So I’m new to the site but I was hoping to get some help, or just encouragement. I’m a 24 yo female who has had migraines since age 9. I’ve been on and off triptans throughout my life to no avail. Last night I had one of the worst migraines I’ve had in a long time, complete with vomiting, neck pain, the works. Trouble is I also have CP so my posture is poor as well as GAD so I’m stressed/anxious more often than not. Lately I’ve been having brief ice pick type headaches at the back center of my skull even if I don’t have a migraine or like last night, with the migraine. I was unable to go to my yoga workshop today and I’m behind in school (I’m a grad student.) I’m in the process of getting an appt with a new PCP but any advice on coping til then would be amazing!
By Nancy Harris Bonk Moderator
Coping with chronic pain is not easy – it’s frustrating and exhausting to be truthful. Now, having said that I can share with you the things I do that help me.
First learning all I can about migraines and other conditions is very helpful for me. It makes me feel more ‘in control’ when I understand my diseases.
The other most helpful thing for me is having a counselor. However, not everyone shares my enthusiasm about talking to a therapist. I think if we have chronic illness(s) it is imperative to learn daily coping and life skills.
Here are some other points of view that may be helpful; https://migraine.com/blog/coping-skills-save-the-judgement-what-matters-is-finding-what-works-for-you/.
I hope these things help,
In the past 2 months I have been in an extremely dark place. It feels as if the rest of life looms before me like one never ending cycle of pain doctors and sleep all while being a burden on my dad. I am feeling very hopeless.
I am 30 years old, I have one friend, I am on disability and I don’t know if I’ll ever be able to work. (I don’t know how some of you do it, I tried, I couldn’t function). I never go out so I’ll never marry or have kids, which is probably good, because how would I take care of a kid when I can’t take care of me?
I’m going to be 31. I can’t even live on my own. I have nothing ahead of me. People tell me “think of all the people that have it worse than you” and I know I’m selfish, but I can’t think of those people because my head hurts too much to think…
I feel hopeless, desperate and sad. The pain clinic put me on lyrica today. I’m getting a psychiatrist who is going to help me get off the methadone (another post)… but nothing has worked so far. Botox lasted a week, biofeedback was a joke. I’m not allergic to gluten…
I’m sorry. Thanks for listening. No one else gets how hard it is.
Hi Andrea and Welcome,
I just wanted to say hi and tell you you are absolutely not alone. I am 31. I started getting migraines when puberty hit. At first they were sporadic, gradually increasing in my twenties. After I had a hysterectomy as well as both ovaries removed two years ago due to other health problems, my migraines went from 4-6 a month, to 25-30 a month, sometimes unrelenting. I totally get where you are coming from right now. I just recently quit my job, which I have had since I was 16, because I was simply no longer capable of working 55+ hour weeks. Check, sometimes I just can’t work. Period. The cognitive, physical, and emotional consequences of this disease when it becomes chronic are immense. Having said that, I feel, just in the last few weeks, that I am beginning to see a small light at the end of this very black tunnel. I found a Dr that is willing to try multiple approaches with me, not all of them orthodox. I have opened myself up to trying thing that I might not have a year ago. I have finally found a med that is working for me as an abortive (DHE-45), and am working on the preventatives. I have a new, less demanding job (way less hours). And honestly, if I am not physically able to do this, I will back off, and try for disability. I guess what I am saying is I do understand the feelings you are having, as my life has spiraled quickly down as well, and between migraines and other health issues, I do get depressed and SOOOOO TIRED of being SICK!!! But we can’t give up, nor play the “I’ll never” game with ourselves. I was just reading an article that discussed how hope is the most important and yet indefinable, UN-capturable aspect of both mental and physical rehabilitation. I believe the same is true for recovery from migraine disease, and by recovery, I don’t mean cure, I mean learning how to use tools to lead a meaningful productive life both in spite of, and because of, migraine disease. Pleases don’t let go of hope. You are a valuable person, who has much to give, I am sure. And you are definitely Brave, because you are willing to put your feelings out there to help others to see that they are not alone either. Sending hugs your way,
Oh Andrea, I am so sorry you’re in this dark place right now. You are really not alone.
The hardest thing about Migraine is often the isolation. Because of the stigma, the isolation is often much worse than almost any other disease I can name right now. There is little understanding, so there is little support.
To make things worse, pain overwhelms us in a way nobody without it can understand. This means we can’t get past the pain. We think of it night and day. It makes us seem like selfish people. The reality is that we are selfish thinkers because of the overwhelming pain, but for no other reason.
I went to Washington DC a while back and was partnered with another patient who was a cancer survivor. The most important thing she had to say to the legislators we saw that day set the stage for everything else the rest of us said. She told them something similar to this:
“Having breast cancer was a breeze. Everybody understands it. They support it. They’re there for you. There is literature to help you. Everyone is nice. Even pain relief is offered whenever you need it with no questions. Nobody blames you for your cancer. Nobody infers that if you just go to bed everything will be okay.”
Here is a post that might help you if you give it to those you care about, just so they might understand you and this disease a little better:
This disease forces us to become superheroes. https://migraine.com/blog/migraine-superheroes/ This is something that might be helpful for the to understand, even in a tongue in cheek manner.
Having Migraine means that getting better management for ourselves is very time consuming. There is no reason for you to think that you will have to live out your life like this though. What you need are a great combination of a super doctor and the patience of Job. We didn’t get this way overnight, and we’re not going to get better overnight either. The fact is, it take a lot of work too. There is hope for us though. This is what we live for – a better life, little bit by little bit. The phrase I use is, “How do you eat an elephant? One bite at a time.” Migraine is our elephant. Getting better is not impossible, but it isn’t easy either.
I’m sending you some virtual ((Hugs)) because we all need them once in a while.
I hope you’ll keep coming back and let us know how you’re doing. Look to online sources of support like this from people who understand your experience. And I’m glad you’re seeking outside professional help too. I think it’s really smart that anyone with a chronic illness looks to others who might be able to help them figure out new and different ways to cope with living ill.
Feel free to private message me any time, okay? We are here for you…
I’m new to this Chronic Migraine thing. When I saw my headache specialist at Mayo on Tuesday I was told because all other diagnosis were eliminated I have Chronic Migraine. I have not had one day without it since April 21, 2013. I’m a 47 year old nursing student with 18 months to go until graduation. I don’t have a history of headaches or migraines. They do run in my family (mom and daughter). I just don’t know how I’m going to cope and be able to get through school. I’m unable to study past 8-9pm and the meds I’m on have my mind so foggy it’s difficult to concentrate.
I’m feeling hopeless and depressed. My sister told me I’m not happy anymore.
My husband told me last weekend I’m “acidic” toward others. I thought I’d been so careful not to take this out on others. If there is no hope of getting better, only trying to manage pain every single day of the rest of my life what is the point?
How does anyone live with chronic endless pain? Is that really living? No one really understands. Other than meds what other methods have people used which have helped to significantly decrease their pain?
The first thing I want to do is to tell you that most chronic patients are able to revert back to an episodic pattern again. This means that, for the majority of patients, this is NOT a forever life sentence. Here is an article on this: https://migraine.com/blog/will-my-chronic-migraine-ever-become-episodic-again/
It is very difficult to live each day in pain. I don’t think we would be normal people if we didn’t feel depressed and sometimes even angry about the situation. The key is learning how to deal with chronic illness.
There are many posts here on Migraine.com https://migraine.com/living-with-migraine/ that will likely be helpful for you, both in ideas and ways of finding support. However, it is often a very good idea to see a psychologist who is specially qualified to help you learn to deal with your chronic illness issues.
I want to encourage you to keep educating yourself about your Migraines. Learn about your triggers and work to eliminate them. Talk to your doctor about getting on a good preventive medicine. Find the best abortives for your situation and keep a journal like the one here https://migraine.com/migraine-meter/ that can help you find patterns and learn how to manage your chronic Migraine the best you are able.
Remember too, that there are some amazing new things coming down the pipeline for us soon, so hang in there! Remember to love your family and do your best to live with a condition you didn’t sign up for.
Thank you, Ellen, for the suggestions. I think I will find a psychologist to help me. I’m an avid reader. Could you make any recommendations on good reading on migraines?
Honestly, some of the best doctors and patient advocates are right here at Migraine.com. Have you tried going through the blog, or looking at the topic pages at the top? There is a great search box at the top right that will help you see the most recent posts on the topic of your choice. You’d be hard pressed to find any other place with as much reliable information. It’s a super place to start 🙂
Today will be officially one week that I have been in inpatient care here with MHNI. I’ve had more set backs and fights with my insurance then I can count including getting all the way to Chelsea, Mich. being 5 minutes away then the next day being told because insurance didn’t do their job correctly it would be another 2 months till I got to try again. However we finally made it happen on Jan 8th, they have tried me on more meds then I can count alot not working, a couple making my migraines worse, and the entire time having a 8-9 out of 10 for the first 5 days. Though at the same time crossing off more and more common variables that caused migraines, and on day 4 I got a C2-C5 facet nerve block didn’t help at all, they weren’t bummed and the next day I got a lumbar puncture everything came back normal once again not what they were hoping for. Yesterday they finally hit some success with Depacon and lithium as my protocols(daily meds) then they decided since most of my pain is on my temples and above my eyes they would do a bilateral C2 select nerve block, and after that block I dropped down to a 5-6 the yesterday and today. They are keeping me on my meds, and are going to try a TENS Unit if it continues to help I will either be discharged tomorrow or Monday. When I first got to the clinic I was naive I thought this place will be my miracle cure instead remembering that my condition is chronic there is no cure all just ways to of finding that much needed of many keys needed to finally help me reach that holy grail of a no pain day. My friends and family seem bummed that I didn’t get below a 4 or a pain free day, but now if they can get it down to a 5-6 consistently instead of a 8-10 which I have somehow learned to function then it really was a miracle come true.
This is what I texted my friends as response to what they saw as a possible failed treatment. I’ve done a lot of growing up in the past week.
I mean this is a chronic condition there is no cure, so if they can take me down to where the pain is what I consider mild instead of debilitating, and if they can get me nerve blocks plus a possibility of being able to control the nerves with a TENS unit that would be a huge step in the right direction. I would be able to get off the morphine and start job searching again without the fear of my meds messing me over for a job. I would love love love them forever if I got down to a 4 while I was here even for just an hour I don’t even know if I’ve had one of those in my 20’s yet. Overall it looks like a bit of failed treatment on paper especially with how much money and stress I had to go through to finally make this all happen. To me though I’m happy with this outcome through all the tests and blocks they seem to finally have a small grasp on what may be one of the main offenders on why I get so many migraines and why they are so severe. However with migraines there are so many variables that come into play which is why no two migraine sufferers have the same type of migraine or triggers.
Overall I am very happy that I chose to do this, and if they can keep expanding on that C2 nerve and working to control it maybe just maybe I will get that pain free day. 9 years I have had migraines with no neurologist able to tell me why I have so many, and now it is possible they have finally found one of the many keys that could open a possible box of me getting my life back.
The word *FAIL* has a lot of negative connotations, and it’s not really understood the same by everyone who uses it or hears it. So, the first thing I would encourage you to do, is to rethink using the term.
The fact is, your treatment helped you! It wasn’t a magical pill that cured you, but you knew that wouldn’t happen. Your friends and family might not realize that’s how this game is played though. When you use the word fail, that’s what they think – it didn’t work. This can sometimes accidentally get caught up in their head as “he/she failed”, which is terribly wrong.
Doctors sadly consider a 50% improvement to be a fabulous success. Most Migraineurs would differ with this, but again, it’s about how we use these words. Always make sure you and your doctor agree with what constitutes a failure of a treatment, and a success. If you try something, yet don’t agree on this, problems can occur that can create a loss of hope and understanding for you and those that love you and want you to feel better.
I am assuming they have asked that you return for further treatment at a later time? This too is a good thing. You see, you didn’t get into this situation overnight and it’s going to take some time along with trial and error and patience to get better. I’m often seen here to ask patients an important question…
“How do you eat an elephant?”
It’s the answer that is so important here…
“One bite at a time.”
This means that as long as we’re moving forward, we’re making progress. Migraine, especially chronic Migraine that is refractory to treatment, is an elephant, and we can’t expect to gulp it down in one sitting. It’s going to take time. Given enough time, anybody can eat the proverbial elephant. Time and patience…
One other question I would encourage you to ask your doctors – TENS units often work for a period of time on patients, then fail. This too often catches patients by surprise. They think their TENS unit is their last ditch effort to get their lives back, and if it eventually stops working for them, they lose hope and become desperate. Ask your doctor for a backup plan should this become a problem. That way you won’t worry about the future, you’ll already have your plan in place and that light will still be at the end of the tunnel waiting for you!
Hang in there, and thank you so much for your updates.
Glad to hear that you got some help at MHNI. I just wanted to comment and say that it sounds like you have a really good outlook on things. I was diagnosed with migraine when I was 5, I’m nearing 40 now. I’ve been going to MHNI off and on for about 25 years now, with my first inpatient visit in Chelsea back in 89 I think.
I totally agree with your outlook, this is a chronic condition and it’s all about quality of life. I’ve heard the same disappointment from friends and family that the doctors weren’t able to ‘fix’ the problem of my migraines. I was in the outpatient Infusion clinic at Chelsea again last week because my control had been slipping. By the time I left, I wasn’t in constant pain anymore, even though the pain is still frequent and severe. To me, that’s a huge improvement and was time well spent. I look at it as the first step in a process of continuing to improve my treatment. Complete freedom from pain isn’t my goal, being able to enjoy my life is. I’m closer than I was a week ago, and just need to stay positive that things can improve further.
I truly hope you have continued improvement. I’m sure there will be ups and downs, but it sounds like you’ve gotten some traction for the first time in a very long time, and that has to feel great.
Hi all! New here to the site and forum. A bit of history I can recall my first ever migraine, I must have been 13 or 14. I recall getting a numb arm, seeing stars, dizziness then a 20.0 pain from hell in my head. I would get this all through high school. My mom I don’t think understood what was happing so often she didn’t believe my headache was that bad! I did miss school when these migraines occurred. Oddly they would start up when I was sleeping and I could feel the pain in my sleep. These migraines stopped my sophomore year of college with one big blow out migraine. For years afterward I figured I was migraine free. I did though often get these “sinus headaches” they would be about a 6.0 throbbing between the eyes, face pain. Since I have been seeing a neurologist I found out they were migraines! not sinus infections. About two years ago I had a return of the Aura migraine. I had forgotten really what it was so I wasn’t sure what was happening. I knew this was a bad sign. I then started getting odd symptoms which included a week long of nausea, never throwing up though, just this every part of my body nausea that I even felt in my sleep. I also had mood changes and no appetite. I went to docs and I got oh it’s a virus etc, I am thinking yeah for two years? When this nausea week ended I would feel really awesome, likely it didn’t even happen. Despite these episodes I managed to make it through work really just sitting in my chair milling around because I was just out of it. My doctor said most likely it is either a stomach migraine or leading up to a “big one” . This has been confirmed to lead up to sometimes a big one. About 6 months ago the week long nausea kind of ended with an Aura migraine that started on a monday ended on a tuesday only to get another on thursday the same week. I was fried afterwards , brain totally fried. Last year I had 4 days of Aura migraines that I had to leave work and go home. Thinking back I was going to work with the starlings of the Aura but still went on to work. Not sure how I made it. Since last year no Aura migraine just as I label 5-6.0 migraines that strike me right between the eyes followed by bouts of nausea for days. I am finding myself usually in bed on the weekends due to the nausea and the feeling it comes with it. I realize that all this migraine stuff is starting to impact activity and the ability to just function sometimes. I really hate the nausea though promethizine works it knocks me out! I take it at work end just cannot function, I also use cola syrup and ginger stuff to help. I really am fearful of feeling the starting of an Aura migraine, they are just awful. I would say the nausea is making its way up the list of the 20.0 migraines for I feel it is equally as awful. I’m not sure why these migraines have returned. I think maybe some part has to do with stress and just getting older.
I am so sorry you’re struggling this way. You are not alone though, and there is so much help out there for you!
Many things you didn’t mention, so I’m going to make some assumptions, but there are definitely somne things to talk about here. I don’t want to give you too much, so let’s start somewhat slowly…
Are you seeing a Migraine specialist? This is usually the first, best, most important step for someone who is having problems with their quality of life due to their Migrainies. Here is a list that can help you find someone with special training and a load of experience to help you:
Looking For A Migraine Specialist? https://migraine.com/blog/looking-for-a-migraine-specialist/
Next, are you on any preventive medications? Preventives don’t cure Migraines, but they can lessen the severity and frequency and certainly help us get our lives a little bit better. Here is a link for you:
Migraine Management Essential 4: Preventive Treatment https://migraine.com/blog/migraine-management-essential-4-preventive-treatment/
3 Big Questions on Migraine Preventive Medications https://migraine.com/blog/3-questions-migraine-preventive-medications/
Migraine prevention can be life changing!
How about triggers? Do you know what might be triggering your attacks? Try this link to learn more:
Migraine Management Essential 3: Trigger ID & Management https://migraine.com/blog/migraine-management-essential-trigger-management/
Are you aborting your Migraines, or simply treating the pain? Pain medications can be detrimental and actually cause another headache disorder called Medication Overuse Headache or MOH. here is some information about MOH:
Help! How Can I Not Overuse Migraine Medications? https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/
Ideally we shouldn’t use these medications more than 3 times weekly, or their use can actually end up causing more headaches instead of helping us.
Hang in there. This forum is a good place to go to ask questions and get answers you can rely on and take back to your doctor.
Educating yourself is the best thing you can do and you’re obviously on to a good start! Keep up the good work 🙂
Hi there! thank you for the reply 🙂 I’m not seeing a migraine specialist just a neurologist with migraines lol. I will look into with specialist thing. I’m not liking insurance these days, I will just say things are not like they used to be… Some of the preventative measures my doc did mention like supplements but I am guilty of not following through. I think it is being busy, disorganized, and in denial sometimes that the migraine issue exists. If I go for periods without I feel like oh they are gone. I for some reason think I can beat it. Maybe I’m crazy? Or brain just fried.
The trigger & management will be very helpful. I really have no clue what sets them off. I think tracking will also help me become more organized.
What is aborting the migraine? With two types of migraines I end up delaying taking the meds. Doc says take it when I get the first aura symptom which I never do. I think my last one I did and the medicine did absolutely nothing. I just ended up sleeping through the pain.
I try not to take too much medicine in general so I guess this why I wait and see what will occur.
Aborting a Migraine means stopping the process, not covering it up with pain meds. When the process stops, the pain will also. Migraine is usually a progressive disease. This means it gets worse with time, especially when not attended to properly, which can be difficult when you’re not hooked up with a good specialist.
You are not alone in how you react with your Migraines when they subside. This is one reason we surmise that in-person support groups rarely survive past a year or two. When you’re Migrainey, you don’t feel like doing anything, so don’t go. When you feel good, you just want to get your life back and ignore them as if they don’t exist. Then you don’t want to go to a support meeting either, lol. It’s a tough cycle to break for most people, which is why online support has been so successful for most patients who feel the need for it.
Your plan sounds good, and I hope you are able to remember that it’s so terribly important to put yourself on the list too. Do these things so that your Migraines don’t continue to get worse.
Hang in there, and do let us know how things go!
Today a big insane storm hit our hometown, thunder and lighting pouring rain and wind in the Midwest in winter! With it came a major migraine. I awoke with it and suffering every type of symptom you can imagine, I still went into work. I work in a grocery store as a cooking instructor. This was one of our busiest days of the year. As a manager I felt I had to be there.
When I got into work, my body was so wrecked with pain I could not even move. I stood with my head supported by my locker door, unable to even find my meds in my purse. I just stared crying uncontrollably, which was so embarrassing. I clocked out and went into a dark office and cried for awhile and waited for the meds to kick in. When they did, I put on a pair of sunglasses I keep for bad days and a baseball hat and went to work. I felt like I was working under water, moving so slow, and having trouble speaking. I am lucky that I am well liked by my customers and co workers they were all very sweet.
Weather is a very big trigger to me, I can do nothing about the weather, I want to be able to not be a mess when storms hit. I have tried every thing even botox with no help. Any suggestions would be appreciated.
By Nancy Harris Bonk Moderator
That sounds like an exhausting day! It’s true, changes in the barometric pressure are strong migraine triggers for many of us. We do have information on weather triggers in this link with ideas on how to prevent them; https://migraine.com/blog/migraine-triggers-the-power-of-weather/.
Overall trigger identification and management is important in a migraine regime. Do you know what any of your other triggers are? If you can figure out what they are, you may be to avoid them and therefore have fewer migraines. Here is information on triggers; https://migraine.com/blog/migraine-management-essential-trigger-management/; https://migraine.com/blog/migraines-have-triggers/ and https://migraine.com/blog/keeping-migraine-diary-basics/.
I hope this is helpful,
I am new to this forum but everything I am reading I can so much relate to. I have had migraines for 15 years but for the last year very severe and chronic. I have been on several medications through the years and botox with no relief. My next step is the Mayo Clinic in AZ next month. I guess the coping part is the hardest thing. I was a bank manager for 27 years and now my career is gone. I have run out of FMLA and have no hope of returning….at times the emotions are overwhelming and sadness takes over. Most of all I have felt so alone even with my family because they have not experienced this type of pain. I feel very isolated and alone and not sure what to do with myself since I have worked all my life. I feel like I can no longer be a productive part of society at the moment. I am glad to have found this site and see that I am not alone.
Hello and Welcome!
There are lots of folks here for support so know that your not alone. Migraines really are horrible. Hopefully the Mayo Clinic can give you some help.