Getting sad, and sadder

I have an appointment with my Neurologist in about an hour. Since my migraine medication has totally failed and I have tried everything else, I do not know what to do. I have had these life stoppers for 29 years.

My friends (what few I have left) pretty much treat me like I am crazy or obsessed by migraines. I say, “if you are living or trying to live with constant pain in your head, with a myriad of other troublesome symptoms, can’t make any plans and have nothing to treat it, how should one feel?

Last month I was accepted into a CGRP trial about 50 minutes away from where I live. I was overwhelmed with hope and joy. Yesterday I received a call that the study was suspended. Back to square one.

I was not even sure I could drive my car to these trials since my medication has failed, I usually end up in bed unable to stand or walk that day followed by 4 more days of being dizzy, sick and terrified.

I decided not to talk to my friends right now. Just this site.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (46)
  • Savta45
    2 years ago

    Oh yeah, & Botox too. Did nothing.

  • Ellen.S author
    2 years ago

    Hello Naomisdtr18
    I am glad that you had to write. I have told several friends that their are others who exist, (other than me) who suffer greatly from migraines. I can still feel that they think, oh it is only you. I have not heard of anyone else who dwell on what they can’t do.

    I have already had 2 migraines since my regression. The pattern “they” follow is the only stable thing in my life right now. 🙁 Since I have had these for 29 years, I have gone through what you have described. Running out of sick leave, and a general disbelief that a headache could incapacitate a person. To this day, even the less severe headaches make me vegetate in bed or a chair for 6-9 hours of inactivity. With no medication (Tryptans) that work, I could be dealing with 12-74 hours before I can walk straight.

    I am so sorry for what you have gone through. I try to tell myself that it could be worse, so I must be grateful for having 1 or 2 good days. That is easier said than done when you have people around you, telling you how “busy” they are. That there just is not enough time in their days, to do all they want to do. How ironic, isn’t it. To sum it up, I guess that ‘WE’ are supposed to learn what “frustration” is all about. Not buying more time to do things, just doing things in the time we have.
    I send you healing thoughts and light.

  • Savta45
    2 years ago

    Hi Ellen.S,
    I had to write, as I hear & share your frustration with migraines on many levels. Just yesterday, I had to miss out on a social occasion that my husband & I had been looking forward to for several weeks, due to, you guessed it, another migraine. I was SOOO upset! Not fair, I said! Of course, this was far from the first time, & won’t be the last. My littlest grandson will have his 3year old birthday party next Saturday. I just hope & pray & can attend! I’ll probably be about ready to start throwing things through windows, if not!
    I have had these for 8 years now. Never had headache issues in my life before that. Well, you know, I had the occasional headache, took a couple of Tylenol & got on with it. I even swam competitively, went to practice with chlorine, glare of sun on the water, even on my period, with a headache. Not pleasant, but, I was into it, nothing was stopping me from achieving my goals, so, touched it out. Even the thought of that now makes me sick!
    So, jumping ahead about 40 years, I couldn’t work anymore. I tried. I had been trying for 6 years. I was using more & more sick time. Then, I had to take off, even when I didn’t have sick time. Or, I went to work, only to have to leave before my shift was done. Not good. I had to retire. Fortunately, between my husband & myself, we were able to make that work, as I was retiring early. Because I was going to have to retire, or I would eventually going to be fired. I didnt want my career ending like that. Btw, I’m a nurse, an RN.
    The other thing that happened, actually before I started getting the migraines, was that I started getting Deep Vein Thrombosis. Blood Clots. I got my first one in 1998. In my chest, my right Subclavian Vein. It’s a big Vein, 2nd largest vein coming away from the heart. They opened that up. Then, in 2003, I got more clots, three more, in 6 weeks. Then, I had surgery to remove the top rib on the right side, since they thought that the rib was being compressed by my collar bone, & that was what was causing the clots. I got 2 more clots since then.
    So. I’m on 2 blood thinners for life. And, surgery? Not very likely, unless it’s a life or death situation, literally, because, even for “normal” people, there’s always a risk of blood clots with surgery. And, I can’t take most meds for migraine. And some docs don’t even know this.
    I went to a major university hospital to see a headache specialist last year. He told me that there was no reason that I couldn’t take Tripans for my migraines! I had been told for all these years that there was NO WAY that I could, because of the blood thinners! After doing a bit of research, what I found out was, it isn’t the Warfarin that is the problem. It’s the Triptans. They can cause clots. It’s supposedly not that much of a risk. But, you know, I’ve clotted twice while on the Warfarin, something that isn’t supposed to happen. I have 4 stents, & each one of them was supposed to take care of it, so it would never happen again. Am I in a good position to take a risk, ANY risk, for clots?? I don’t THINK so! And, for this, we paid $800, out of pocket, for 20 min appointment.
    I’ve probably said too much. And this is probably the wrong place for all this. Oh well. Sorry. Got carried away. I’m on Topamax now, which doesn’t seem to be doing much good. There’s one more anti seizure med I can try, then I’m done with what the neurology department can offer me. I’ve tried accupuncture, biofeedback, holistic medicine, diet changes, & I can’t even think of everything else right now. With no result. We moved from a more humid climate to a less humid climate, with some help, not nearly as much as I had hoped for.
    Ok, that’s enough. I’m sorry. I sound like a really sad case, I know there are much worse situations out there than mine. I just get really frustrated.

  • Ellen H
    2 years ago

    “I decided not to talk to my friends right now. Just this site.”

    Me too……………

  • Ellen.S author
    2 years ago

    Hi Ellen H,
    I came back yesterday from a 3 hour past life regression. I have read extensively on the subject and that some folks respond and even lose their migraines after this treatment. This is not a ‘psychosomatic’ issue, but has to do with something called cellular memory.

    I won’t go into the details, the therapist was great and kind. But after I returned home my weekly (M) started. Since I have no way of stopping it (medication failure) I now have to deal with starts and stops and maybe a really bad one, for the next 4-5 days. She tried to leave me with an auto-suggestion to relieve the pain when it occurs. Unfortunately my (M) are not stress related, so that does not work for me. I still have hope that I can go back a couple more times and find the right timeline to commence healing. Good luck to all my fellow (M) posters. 🙂

  • DustyMare
    3 years ago

    I have been in your shoes, til I looked for alturnative for migrains. Botox I will not try. So I found a natural combanation that works for me. Feverfew, Co Q 10, Magnessium, B Complex, and also the last one that my neuro told me about was Butterbur. I have been pain free for about a few weeks and can move, jump, and other things without pain, dizziness, or just sick.

  • Ellen.S author
    3 years ago

    Hi DustyMare, I am happy for you. I have tried all of those natural remedies over the many years. I even grew my own Feverfew. I took it according to a Neurologist who was treating his wife (a book online) with fresh raw feverfew and high doses of Magnesium. I tried it for many, many, months. I really like using alternatives if they work for me. But like anything else, everyone is different.

    I have many allergies and have noticed as I grow older I can not tolerate some harmless seeming plants. Even chamomile. So be mindful of unusual effects. A lot of plants are in the ragweed or daisy family and are highly allergenic. Trial and error is the only way to know for sure if something works. Remember their is a 3 month placebo effect, so keep trying after 3 months to see if something really works well.

  • Ellen.S author
    3 years ago

    Thank you for responding. I must see my Doctor to let him know that the Migernot I requested gave me a very bad response. I took Cafergot 29 years ago and it worked. This med made me so nauseous, I could not stand up. It took several hours of dry heaves before I could just sit up.

    I will look into the website provided by Kbixlou. Thanks..
    18a02yt, you are not alone.

  • 18a02yt
    3 years ago

    OMG – I thought I was the only one who lived with chronic migraine 27/7 for the last 6 years. (since wonderful menopause) I am living a nightmare on my couch w/ice on my head. No meds work. Have tried everything (botox, infusions, nerve blocks, meds, chiro, accupuncture…) useless. Fed up and disgusted with it all. YES SAD and MISERABLE

  • Beth Burns
    3 years ago

    Since menopause it’s been worse. I also have worked in a super bright, glarey office now and have had to fight to get a cube with a wall that blocks some glare. The supplements don’t help, but I take them anyway. Have taken for 7 months now. Finally had a compassionate doctor in the ER after a 10 day or more migraine.
    He suggested a letter from my neurologist saying how we treat my migraines and stating the combo of meds in the ER that work, and for the doctor to call if they have concerns.
    It’s so frustrating I am the sole source of income and I am truly grateful for FMLA , but the 3 years in this job have cost me thousands in lost wages. Every year the loss increases.

    We had hoped menopause would decrease or end t g e migraines. HAH! If only.

    I am so tired of t g e pain and the loss of quality of life.
    And I’m tired of promises of new, better meds that will work. I take so much imitrex my husband’s fears I’ll have a stroke.

    People without chronic migraines have no idea

  • Ellen.S author
    3 years ago

    My migraines actually got worse after my Hysterectomy and started in perimenopause. I got my headache on Saturday thinking at least the pattern is predictable. Then I started getting another (M) on Monday, it disappeared and now, it just threatens me every day. How can you make any plans at all. I pushed my luck on Saturday by going out in the morning, only to start to have big issues with my eyes. I could not see and had to blink a lot because of severe dryness.I counted the minutes to get in my car and drive home, fast.
    I have not noticed it before because I do not push myself usually to go out when getting a (M). Mostly just lie in my recliner trying not to notice time slipping away.

  • tammy ramirez
    3 years ago

    has any one tried the cbd oil for there migraines? And if so did it work? And what about the daith piercing? I’m willing to try anything for relief… Its getting harder to live like this. I feel so bad for my kids and my husband….

  • Beth Burns
    3 years ago

    The daith piercing has no evidence to support it. As an acupuncture point it may help, but a piercing is not the same.
    Try acupuncture first to see if stimulating that poi b t even helps you before piercing unless you are really into piercing.

  • Kbixlou
    3 years ago

    Sgirl,
    I use the 500 mg strength of CBD oil and use 1 dropper every morning. There is a very slight energizing effect which is why I use it in the morning as I can’t have any caffeine. I have no other side effects other than that from the oil. I use it every day as a preventative. The website TheRealmofCaring.org has lots of info and recommended dosages but you have to log in to see it.
    Hope it helps

  • sgirl
    3 years ago

    I looked at the CW Botanicals website. Which of the CBD oil do you use? It looks like it is different strengths 200-500-etc. Also how do you take it? Do you take it every day or only when you get a migraine?

  • Kbixlou
    3 years ago

    I have used CBD oil for the past two years. When I first started it I was having migraine symptoms every day, either starting a migraine or recovering from one. I have had migraine for 20 years. I live in Colorado so my doctor suggested I try mj. After much research and getting some helpful advice from a medical dispensary I decided to try CBD oil and very small amounts of mj. It helped immediately, I had 4 months without migraine symptoms, even after flying 4 times (which had been a guanteed trigger).After 2 years my symptoms are significantly reduced (not gone!) but I am much better. I take CBD oil every day. It is Charlottes Web from CW Botanicals and is extracted from the hemp plant and can be shipped legally in all 50 states. I also vape a little mj when I have head pain or nausea and it usually removes the pain or helps me enough to sleep. It has always taken away the nausea immediately. In the past all abortives had stopped working. If you are interested try this website. It’s a non profit org that is trying to promote research for CBD oil TheRealmofCaring.org. As a side note, I am less impacted by this regimen than all my years on triptans.
    I hope this helps any who have been wondering. I am sure it’s not for everyone but for me I am so glad I tried it.
    Kelly

  • Ellen.S author
    3 years ago

    I watched something last night on TV about brain injury CBT and thought exactly the same thing. I will call my Neurologist and ask, but he just wants me to pay him another office visit (key word is $pay$)so, I may ask my primary to see what he can do. Only trying it will let you know. Good Luck!

  • Soteria
    3 years ago

    Hi Ellen S- Here’s my story: had migraines all my life starting about 5 years old. Always got a bad one the day before my period and sometimes several others during the month but nothing like what started 7 years ago right after I went through menopause – the intensity, frequency was off the charts – weeks and weeks of daily 4-8 hour migraines that eventually progressed into 2-4 day migraines with the vomiting so bad that I end up in the ER with serious dehydration. Couldn’t drive, could barely speak. Found that if I got the immutrex down fast enough, that might short circuit the duration – but they kept getting worse and more frequent. Dozens of doctors and dozens of meds – no help. BUT – I am in Boston where they are now doing the clinical trials for the CGRP antibody I enrolled – and Thank God in Heaven, it’s working. I have not had a serious killer migraine (no more than 4-5 on the Richter Scale of pain when they all used to be 9’s and 10’s), the duration of the ones I do have is shorter, they are less intense, no vomiting (haven’t been back in the ER since January, and I am actually starting to think that I have a life again. I am telling you this because after being given up on by just about every doctor “This may be something you’ll just have to live with”…. I have way more days without migraines that I have with them – just the opposite of 2 years ago – and the ones I do have are totally manageable – minor. I’m not sure why your study was suspended but I understand that the 5 pharm companies that are running these trials are all getting the same kind of results – a lot of people are migraine free for the first time in years. And they’re on the fast track to presenting to FDA for approval. So far, they are not seeing any side effects with this ‘med’ so you may see this become available on the market very soon. I just wanted to share this with you and I hope you and everyone else who has lived through this hell can grab a little hope and encouragement from this – that there is an answer out there. Please don’t give up. I had – I figured that my life was basically over. It isn’t. Please hang in there.

  • Beth Burns
    3 years ago

    I hope I can hang on until CGRP comes out. If it makes it through the final hoops.

  • Ellen.S author
    3 years ago

    Thank you Solteria,
    I have been researching the CGRP for 3-5 years now. It sounded very promising.I subscribe to”clinicaltrials.com and I have been notified by email and was able to enroll in 3 different Pharm trials in a town 45 minutes from where I live. I have been turned down 3 times because of my age.I believe the cut off is 65 in most cases.

    I have read that once it is approved in 2-5 years it could cost $5-10,000.00 for a months treatment. I feel such empathy for those of you who have had these (M) from childhood. On the optimistic side, there is hope for all of you.

  • Amybeth
    3 years ago

    My son enrolled himself in an anti CGRP study for chronic migraines. (the first dose there is no placebo!) He had his first shot 8 days ago…no negative side effects so far…I am praying it will work. Thanks for sharing your positive experience with the trial! It made me feel so much better!!

  • Coley
    3 years ago

    I’m so sorry. I hate to say I know how you feel not wanting to talk to any friends because of your migraines. I really sincerely hope you figure out the culprit for some relief. I have a very rare food allergy that causes a lot of mine which is caramel color. no, they don’t have a known test for it. Its in everything from frozen food, bread, canned food, seasonings, sweets, lunch meats, other meats, Sodas, juices, alcoholic beverages, etc. Its crazy and way too much too list!!

    The only way I was able to discover this was keeping a very detailed food and drink journal. No medications at all help me when I get a migraine from this awful food chemical. Caramel color is far different than regular caramel. Some of my friends think I’m crazy and don’t believe me. Or they think I’m over exaggerating, and no longer invite me to things anymore. It sure sucks.

    But I am happy I found this site, it’s made coping a lot easier with this illness. And I’m sorry if you already looked at caramel color as a possibility and what I’m saying isn’t going to help you.

    My neurologist was shocked I figured it out on my own and without the help of any health care provider. Going grocery shopping for new things is a nightmare, because I have to read all labels.

    I do wish you the best of luck.

    Coley.

  • Ellen.S author
    3 years ago

    Hi Coley, I am glad that you have identified your trigger. When I was first diagnosed 29 years ago, knowing that medical tests are invasive, expensive and sometimes hard to find where you live; I decided to bake and cook everything from scratch, thus eliminating all processed, chemically enhanced foods. Oh sure, I break those rules if and when I dine at a restaurant, but in the last 15 years, I dine out very seldom.

    I have not been able to find one single dietary reason for my migraines. Certain foods containing Tyramines can trigger an event, but the event had itself on it’s schedule anyway. Those foods include fermented foods, alcoholic drinks and many healthy fruits vegetables and even yogurt, which I made myself from organic milk.

    I appreciate your story because it may help someone else who is like you with a chemical sensitivity
    .
    For 25 years I grew my own organic vegetables to ensure their were no pesticides/herbicides in what I ate
    and although I am sure I enjoyed the taste and hard work, it did not change my headache pattern.

  • Anne
    3 years ago

    I’m so sorry. Relpax is the only pill that works for my pain and I’m having luck with taking Nadolol as a preventative. I’m down to about 6 migraines a month with it. I’m seeing a good neurologist at UCLA – they have a headache clinic that’s on the cutting edge of research. Before that, I went through a bunch of doctors who tried but were no help.

  • sgirl
    3 years ago

    I was just switched to relpax when my amerge quite working. I am told I will build up a resistance to it too. All else fails my doctor gives me a topomax shot. It is pretty much 100% guaranteed to break it in 24 hours.

  • Ellen.S author
    3 years ago

    Anne, I have hope for you. I have been taking Amerge for 16 years as the only Tryptan that would work. Ones body can become tolerant to medicines. Before you will become tolerant their is the hope of new medications that you can switch to, if and when that happens.

    I always try to explain to my friends and fear that they really do not understand, that the severity of ‘some’ peoples migraines can become so severe, and if not stopped; the person is literally lying prone with eyes shut, unable to move for as many as 2-3 days. Only able to get up to hydrate and then get back in bed. Then for another 4-5 days you just feel weak, dizzy and ill. When I was younger, I missed a lot of work, vacations any many other things. But even with that, I was younger and stronger and had a better rebound to normalcy. If we can call that normal.
    I am hopeful for you Anne, Good Luck and be well!

  • Ellen.S author
    3 years ago

    Since I do not think I can consider this surgery at this time in my life, I am going to proceed with past life regression in a few weeks. It is also not covered by insurance, and it is less physically invasive. If the surgery were available when I was in my 40’s or earlier, I would have tried it.

    I do want to mention here something that has helped me a little. And that is; Coffee Enemas, I read about it in an old Edgar Casey book and have been using that method successfully to “lessen” the severity and shorten my recovery time.

    If the migraine is really severe like I get(every 5-6 months) nothing will help. It usually is so bad that I would have to call and ambulance, since walking/standing is nearly impossible, even to open my front door. But when I get 2 migraines a week that are bad enough to cancel all plans I spend 30 to 40 minutes with this procedure and it allows me to function at home.

  • rosie.smiles
    3 years ago

    I understand about not doing the surgery…I realize it’s not for everyone…just thought I’d throw it out there in case you had never heard about it or never considered it. 🙂 I know what works for one person isn’t necessarily the answer for everyone else. I’m glad you found something that at least gives you a little relief, and I hope you can find something that gives you more help.

    Take care!
    ~Rosie

  • Ellen.S author
    3 years ago

    Hi again, My Neurologist was a waste of time I am afraid. Mine, not his. He got his office visit from Insurance, well over the $200.

    I had to tell him my entire history over and over from the beginning what I have tried, and what did not work and how my lifestyle is NOT a factor. That was done 3 times on subsequent visits. He has his assistant typing away while asking me these questions; for my file, but apparently it is not for him to read.

    But before I could ask him about medical Marijuana, he skillfully backed out of the exam room (15 minutes)telling me to see him in 6 weeks or more.

    I had to yell,”STOP” I agreed to see you if you would give me with a few samples since I have about $400.00 worth of meds at home that do not work. I need to know that I have something. His assistant came back with 3 pills and a sample of nasal spray. I knew they did not work before (tried them) but I had to know that I would not be a down with the next headache for 4-5 days.

    Yesterday I got the pre-migraine symptoms (now at the beginning of the week) and decided not to wait until the severe pain arrived. I used the nasal spray. It did not work, so at 9:00 at night I did a coffee enema, and it relieved the now apparent pain enough for me to sleep that night.

    If nothing works to abort my headache, I get severe vertigo for one week or more. That limits everything I do
    because I have Osteoporosis and do not want to risk a fall.
    I do not take any meds for that, just eat a lot of calcium rich foods. I hope this can help anyone out there.

  • Endless Search
    3 years ago

    Ellen,
    When I first moved to a town in North Dakota, I started to see a neurologist for daily chronic migraine who treated me like not only as a patient but a friend. I went to her for ten years and we tried so many things to get a handle on this ‘wild child’. While we were not very successful at constructing a strong enough damn to stop the raging migraine waters, she understood migraine and the emotional toil that it takes when having to deal with it day after day. Unfortunately, she moved away about six years ago. And even more unfortunate, I have not found a doctor since who I feel fully understands migraine and who has the essential bedside manner that makes me want to make return trips. Recently, I walked out on a neurologist and cried because I was not pleased with the way that she berated me and asked accusatory questions about the medications I was taking. I would have gladly switched places with her for a week to see how long it would have taken her to cry uncle. Sometimes the only way to have someone understand is to experience it themselves. As my sign in name- Endless Search – indicates, I am on a marathon search for the perfect doctor who will prescribe the perfect medication so I can have the perfect life.

  • rosie.smiles
    3 years ago

    Sorry your neurologist appointment was not helpful. 🙁 I don’t want to tell you what to do, but perhaps getting a different neurologist would be a good move (if you have to go through your whole migraine history each time you see him anyway). The first one I went to was rude and treated me like a mental case and was NOT professional, so I got a referral for a different doctor, and he was much kinder and tried hard to help me. I think the thing about lifestyle causing (or making worse) migraine is overdone. I’m sure there’s some truth to it, but I got tired of always defending my lifestyle. I watched my diet carefully with eliminating “headache trigger foods” and strictly avoiding my food sensitivities and allergies, exercised regularly, I do not have anxiety or depression and I am not typically a stressed person, and I never do anything with alcohol or drugs…and I still had chronic intractable migraine and still people went on about lifestyle. I finally had the migraine surgery and that helped much more than diet or exercise or whatever.

    I hope you find relief…

  • rosie.smiles
    3 years ago

    Hello Ellen.S,

    I’m so sorry to hear you are in such a difficult situation. I really feel for you. I had chronic intractable migraine and felt like I had tried everything too. I understand the disappointment also. I had been told by so many doctors things like–I just don’t know what to do with you…you shouldn’t be feeling like this but I don’t know what to do about it… I’m out of good options for you… Sometimes I was treated like a mental case and as if I just got migraines because I thought I was going to.

    I finally had a consult last year with a plastic surgeon who does migraine surgery (nerve decompression and nose surgery). I was finally able to have the surgery six weeks ago and it has helped me so very much. It’s like night and day difference. My head is sore, which should improve with time, and I get some mild headaches sometimes (mostly related to sinus/allergy issues I think), but I am not in bed with the blinds pulled leaning over a dishpan and wishing to die like so often before (neither am I taking strong medicine for migraines anymore). I try not to tell people with migraines or other debilitating health problems what to do or that they ‘have’ to try such and such–I know what it’s like to be on the receiving end of unsolicited medical advice…but I would encourage someone with terrible migraines to at least consider migraine surgery if they haven’t done so already. I think it’s worth it to at least consult with someone that does migraine surgery if possible (I know it’s not always possible, but thankfully I live within a few hours of this surgeon)…it’s not like you have to go with a specialist’s recommendations just because you talked with him…

    Anyway, I do hope you get relief and I wish you the best.

    ~Rosie.smiles

  • rosie.smiles
    3 years ago

    JennS,

    Thanks for sharing your experience! It sounds like you got relief really fast! I hope the second surgery goes well for you. I had mine all done at once (it took 7 1/2 hours) because I didn’t want to come back for more, or pay for anesthesia another time. It’s a shame that insurance doesn’t cover this…it helped me more than any of the other very costly treatments/medications they were paying for which I do not need anymore. Did you have any surgery in your nose? Are you numb at all? My feeling hasn’t come back yet, but my head, especially my forehead, is very itchy so I think it is is starting to return. Nerve blocks did not work for me, but the surgery still helped…but I know different surgeons have different criteria for deciding whether or not someone is a good candidate for surgery.

    ~Rosie.smiles

  • JennS
    3 years ago

    I too had Nerve Decompression Surgery a month ago and have had already seen a dramatic difference.
    I’ve had chronic severe migraines for over 20 years and had tried every medication and therapy out there. It hasn’t cured me because I still have menstraul migraines but not having a daily dibilitating migraine that leaves me in bed and unfunctioning is a lifesaver for me, and my marriage.
    My surgeon is doing the procedures in 2 parts, the first was there trimenginal nerves (temple, forehead and eyebrows) with 6 different incisions. He didn’t cut any nerves but rather “decompressed” them from the afflicted nerves – excised the muscles from the nerves so that they aren’t constantly firing. I go back in 2 weeks for my 2nd surgery for my occipital nerves (back base of the head).
    Insurance companies don’t pay for this procedure but it’s been a life changer so worth every penny.
    Unfortunately this procedure isn’t for everyone, it’s for people that Nerve Blocks provide relief and they are wanting a more lasting remedy.
    My surgeon works for The Migraine Relief Center http://www.themigrainereliefcenter.com based in Houston, TX but he has a satellite office in Las Vegas and I believe they are trying to expand in other markets out there. If I can help answer any questions for any of you out there please let me know.

  • rosie.smiles
    3 years ago

    Ellen.S,

    One more thing–just wondering how your neurologist appointment went and if you got any help…

    ~Rosie.smiles

  • rosie.smiles
    3 years ago

    You’re welcome…I’m glad someone else is able to have some hope through my experience. 🙂 This website has some information about migraine surgeons and where they are across the US. http://themigrainesurgery.com

    I feel for you with not having family. That would make it so much harder. I have wonderful support through my family, church, and friends and that helped so much. I am 22 and am glad I went through it (it was worth it…it wasn’t that terrible), but I can see it would be different with different ages too. I’m not one of those people that thinks one size fits all! 🙂

  • Ellen.S author
    3 years ago

    Again, Thanks for the info. This is the type of surgery I read about several years ago. You have definitely been through quite a lot. I am not sure that at 71 I have what it takes to go through all that. Also, not having any family there is no backup help. I am still going to do a little research on what is available. I live in AZ so, it is too far for me to go to Maine. Thanks again. You are a ray of hope! 🙂

  • rosie.smiles
    3 years ago

    Hi Ellen.S! 🙂

    You are so welcome! I am hoping my experience is able to help others in some way. The surgery involved decompressing the nerves above my eyes and at the back of my head. What he did was take out the muscle around the nerve and surround it with fat to cushion it. The incisions are well hidden. I also had my temples done, but instead of taking out the muscle (it’s your chewing muscle and kind of necessary 🙂 ) he cut the nerve. The nose surgery was similar in some ways to what they do for sinus problems (I also had sinus surgery and the nose part was not as bad as that) or a deviated septum (crooked bone in the nose). Basically the goal of the surgery is to relieve pressure/irritation on the nerves. Does this make sense? If you have other questions please ask! I will do my best to answer! The surgery took 7 1/2 hours and I had 6 incisions besides the work in my nose, but not everyone’s is that major…it was just that my pain was so wide-spread. I think there are other procedures that are done for migraines, but I believe nerve decompression is the most common and from what I’ve heard most successful. It didn’t change my looks, except that people say I look a lot better without that tired, in pain, and tense look. I don’t know where you live, but my surgeon was Dr. David Branch in Bangor, Maine and he is amazing! I guess a lot of plastic surgeons are taking it up now, but Dr. Branch is one of the original ones that started doing it and so I was very comfortable with him. I would recommend him with no hesitation. Here’s his website in case you are interested in reading more about what he does– http://www.northeasternmigrainesurgery.com . My insurance didn’t cover it but I go to a wonderful church where people really care and we had enough money given that I was able to get the surgery anyway. They said that insurance does approve it sometimes (I think the company I have is known to be especially bad for it), so maybe if you opt for this you would still be able to keep up eating…haha. 🙂 Glad there’s at least something left in life that you can enjoy! I’ll be glad to answer more questions if I can! 🙂

    ~Rosie

  • Ellen.S author
    3 years ago

    Thank you Rosie. This is the first REAL advice that I have received thus far. Please keep us updated here from month to month on your recovery and migraines.
    Can you be a little more specific about the surgery? I live in a small town, 45 minutes from a “city”. I am not sure if that is done here. I will check it out. I have heard about some kind of nerve surgery for migraines, not sure if that is it. I am sure my insurance will not cover that, but if I could get some kind of life style back, I will have to see if I can give up eating. 🙂 Kidding! That is about the only thing I look forward to.

  • Joanna Bodner moderator
    3 years ago

    Hi there again Ellen.S –
    Love seeing that you’ve been able to connect with some other members here! If you are interested in reading some additional information on surgery for migraine, I wanted to share just a few of the articles that we have related to this topic:

    1. https://migraine.com/blog/migraine-trigger-site-deactivation-surgery-studies-not-convincing/
    2. https://migraine.com/blog/curious-about-migraine-surgery/
    3. https://migraine.com/blog/finding-the-right-migraine-surgeon/
    4. https://migraine.com/blog/migraine-choosing-surgical-nerve-decompression-candidates/

    I hope you are able to gather some good information and background as migraine surgery is certainly a big decision to consider!

    -Joanna (Migraine.com Team)

  • Maria Walheer
    3 years ago

    Have you tried clown therapy? I found some relief clowning with Patch Adams for 8 days in Guatemala.

    I am heading back to Costa Rica this year since I feel my neurologist is throwing his hands in the air with me.

    Find the supportive community you need. You have the right to heal!!

  • Ellen.S author
    3 years ago

    Thank you for responding to my post. I have indeed tried “everything” with only one exception, and I will let you all know how that goes after I have started on this new path.
    I am an avid researcher. When I am not down and out from a debilitating headache I am on the web, library and medical sites, searching. I have also been on a very healthy diet/lifestyle since I was first diagnosed 29 years ago, with Hasimottos, Fibromyalgia and Migraines.

    The biggest side effect from migraines is a sense of being powerless. That is why I have been actively trying all of the current and past available modalities.

    Thank you again for sharing with me.

  • Alis10
    3 years ago

    Over the past couple years, I also have started hanging out with friends less and less. I used to get so excited to make plans… I would feel great… and then like clockwork I would be hit with a migraine. I have cancelled plans at the last minute too many times and have also just stood friends up because I am so sick and don’t have the energy to contact them. I don’t endure them for the same length as you, but I fully understand what they can do to relationships and just everyday functions. I try so many different things and they only work in the short term. Lately I have been so discouraged that I can’t enjoy life anymore.

  • Ellen.S author
    3 years ago

    Alis,’Thank you for posting. I totally understand how you feel. The degeneration of my social life took some time. When I was younger, I had less fear of the onset. I could mark on my calendar and predict when the next one was coming and work/plan around it. I also had more endurance and strength, physical and mental. After I reached senior-hood, (age related) I began getting them twice a week and then erratic days. Planning was impossible and frustrating. That is when the friends I had left would just call. I feel badly for them, I do not know what I would do except possibly say things like” how awful I wish I could help you get through this. That sounds nice doesn’t it? I guess you have to know it to be able to get it.

  • Joanna Bodner moderator
    3 years ago

    Dear Ellen.S,
    First I’d like to start off by giving you major kudos to share what you are enduring with living with migraine. Please know you are NOT alone and that this sentiment, feeling as though there is nothing left to do, but give up & lose faith that you will ever experience relief…is felt by so many in this community. Please do not give up hope!!!

    I know if may feel like you have tried everything, but as you may or may not already know, there are over 100+ treatment combinations that may be considered! Here are two articles which may provide you with a bit of hope as it addresses the notion of having tried everything and also makes mention of seeking treatment from a headache/migraine specialist. Have you seen or considered seeing one by chance?

    https://migraine.com/blog/tried-them-all/
    https://migraine.com/blog/ive-tried-everything-2/

    I am also so very sorry that you are not receiving the support and understanding that you so deserve from your friends. Getting friends, family, co-workers, etc. to really listen and understand what you are going through is a daily uphill battle. Living with an invisible illness when you look “fine” from the outside is challenging for people to not doubt what you are going through because they have no idea of the complexity & pain associated with this condition. Here are a few articles that may like to read which discuss places to find support and how to handle people who just do not understand,

    https://migraine.com/blog/top-places-to-find-support/
    https://migraine.com/blog/how-to-accepthandle-people-who-dont-understand-and-dont-care-to/

    Again, we are so happy that you took the time to share your migraine story with us! We are thrilled to have you part of our community. Please check back in when you can to let us know how things went at your appointment.

    Warmly,
    Joanna (Migraine.com Team)

  • Ellen.S author
    3 years ago

    Joanna, Yes, Yes and yes. How else would I have found this site and been a member for many years. I do not know any other Migraineurs. I do appreciate your responding, don’t misinterpret my answer. My book shelf is lined with books written by MDs, NDs and PHDs.

    I was on the GAPs diet for 9 months and found no relief, so, I am sure my headaches are not caused by poor decisions, lifestyle or anything else I do.

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