Severe migraines

Hello all. I am looking for some advice and hope you all can help. I am 26 years old, female and have had migraines since I was 11 or 12. I have been on lots of medications preventive and abortive such as imitrex, zomig, amitriptyline, propanalol, steroids to break month long migraines, topamax, pain meds and so many other meds that aren't approved for migraine use that I couldn't possibly list everything here. I hope you get the idea that I have tried everything my doctors can think of. I have been to a chiropractor with no success. I have watched food, stress and weather and no one certain thing seems to trigger a migraine. My neurologist has stated that he knows of nothing else to try other than Botox. He stated that he has consulted with doctors at university hospitals, headache specialists and other neurologists and all seem to agree that I have been on every combination of medicine known to be used for migraines and others that aren't commonly used. I have considered the Botox but my insurance will not cover the medicine or the doctor visit for the injection. From what my doctor has said about me using Botox injections I am looking at approximately $1000 every 3-4 months. This is why I'm here. I want opinions on whether any of you have tried Botox and if you have had success. I am about to lose my job. I have other medical conditions as well. My current migraine has been constant for about 6 weeks now. Previous to that I had about a 5 day relief after a 4 week migraine. The last medicine hhe doctor gave me was zomig nasal spray that I could use at the very start of a migraine. It would lessen the severity but would never stop it from progressing. I would still have the migraine for weeks at a time. My everyday pain level with a migraine is approximately 9 or 10 and when the pain gets extremely severe, which is sometimes hard to swallow that it could get worse, it's off the charts. I am at a loss as to what to do next. I called my neurologist the other day to see if I could come in for early appointment as I thought I had one scheduled for early may, bub that appointment didn't exist and he is booked solid through early to mid august. I am not able to see any of the other doctors in office or the nurse practioner because of severity and he is the headache specialist in office. I was put on waiting cancellation list but there are approximately 40-50 people ahead of me.

Some of the symptoms I have when I get a migraine are nausea, vomitting, sometimes an aura before but usually not lately, extreme throbbing pain that will start on one side of my head and will sometimes move sides, and extreme sensitivity to light and sound. Talking, breathing and just about any movement makes the pain worse. I work for a cell phone company and talk on phone all day and have to look at a computer all day as well. Both the talking and concentrating on the computer screen makes it worse. I struggle to get through an hour, let alone the day. The other day the pain was so bad I began to consider suicide. People at work don't understand and I have been told to just take some Tylenol and get over it. I am having to give up on my dream of going to law school. I am now faced with losing my job in the next few weeks cause I know I am going to miss several days of work and it can't be helped. I have considered filing for disability since I can't work but that doesn't stop the migraines.

Any help or suggestions are greatly appreciated.

Botox lessened the severity and frequency of my migraines for about 3 years. I don't know where you are living, but $1000 seems excessive to me. I paid 400 Australian dollars which is about 360 American dollars.

I had a job that required me to be on a computer and phone all day and after a year of working there a year I started to get severe migraines. I understand your concerns about your job, but your health, including your mental health, is your priority right now.

You are too ill to have to wait that long for neuro appts. I don't have to much experience in that area, I don't have to see the neuro before my appt, my migraines are not as bad as yours. Someone else can probably give you better advice than I can regarding that.

It is common for non migraineurs to be unsympathetic. Everyone here understands what a serious illness this is.

I'm sorry you are so ill and I hope you find some relief. Don't be afraid to post about anything here. Everyone here understands and will try to help.

TNgirl83, hello, your story is like others here, you have M very bad. I would try to find new Drs. that are not as busy so you can be seen

when you feel like you need to go in. I have seen others post about Botox and 1000 is a low cost. others paid more. it varies by how

much they will inject ? Not many had success and only temp. Keep trying things. You could be helped on your next appt. I hope

something good for you.

I am sorry that you are in such a predicament. I have had migraines 20 plus years and recently they have become daily and I too know that working with migraine is very difficult. Often I have wondered if I could continue.

My head is off today as I write this so I'm not that clear. I just wanted to welcome you to the board and to let you know that here we understand your pain. People who don't have chronic pain generally don't understand. I too have been told "can't you just take an excedrin".

Well no, I can't. The rescue meds I have, which are prescription, don't even work.

The only advice I can give you is not to give up. To keep trying. If you need to find another neuro do it. I am on neurologist #9 and he isn't giving up on me yet.

I hope things work out for you.

That is such a tough spot to be in. I know how you feel though. Seems like I've tried a zillion things and when I walk in, the neuro looks at what we've tried and the outcome and sees this as a challenge. My current round so far is a big zero - no effect and to add insult to injury, the abortives aren't giving any relief and I have nothing that even puts a dent in the pain.

I guess my thought would be to see if there is another neuro that you could be referred to? I know that mine books up but the cancellation lists work differently (they seem to call everyone on the list and whoever responds first gets it) and when I've called his nurse, she's usually able to find me a slot somewhere if he needs to see me asap. Not the stupid receptionist - they follow their rules and don't understand the medical needs.

Also the suicidal thoughts - unfortunately not uncommon. I think when we all get in a bad spell we seriously consider it as nothing is helping at that point. Hang in there. And there are a lot of people who aren't going to understand - migraines are like the commercial, pop and excedrine and it goes away. Unfortunately we are way beyond that...I'm fortunate that I work with people that have them like I do and get it when I work from home rather than coming in.

People who tell you to just take Tylinol have never have a migraine and they are not very empathetic. Hang in there.

I'm so sorry that you are having severe migraines. I have chronic daily migraines and understand what you said about the frustration of this invisible disease.

I just had Botox for the second time (the first time was when it first came out many years ago); it has not helped, and it fact, has made it harder to hold up my head. My neck and shoulders are very achy and crabby. It didn't help the first time either, but my neuro and I are out of options. I have tried all types of meds and even a headache clinic for a 2-week in-patient stay.

I wish I could be more encouraging, but there are many here who know what you are going through. Maybe you will find someone here with suggestions that will help you. I sure hope so!

Ann

Thanks for understanding and your experiences. I haven't been able to sleep for 3 days now cause the pain is so bad and pulled out my calendar and migraine diary and it's been 45 days with this one. The suicidal thoughts are coming back cause I feel so hopeless and helpless. Going to ER before I do anything. The pain is starting to get worse as I type this. It has been extreme over last 2 days. Have any of you noticed that you are having trouble remebering recent events when you have migraine? I am having hard time remembering things from past few days and week. I also have a new symptom that Ive not had with a migraine before-numbness and tingling in my fingers for couple hours straight and then goes away as quickly as it came. Could be related to some other medical issues though I guess. Hope eveyone is well and say prayers for me. I hate going to ER with a migraine cause I get stuck in room for several hours, given shot of benadryl and phenergan and then sent home. Trying to be hopeful that maybe someone will take me seriously today. I'm glad to find so many people who understand

I am concerned that you have mentioned suicide again. I know that pain makes us think of it but when people say suicide we need to take them seriously. Please, let someone close to you know that your pain is unmanageable.

Every person's life is valuable and we don't want to lose anyone. I hope the ER brings you relief.

Tngirl - oh so sorry to hear your suffering so. I know it's hard, but hang in there. I hope the ER is able to give you some relief today and do something for the pain.

Please do let someone close to you know what's going on - don't try to go this alone.

Do let us know how you are doing.

Becky

I'm sending up prayers for you, Tngirl...so sorry about your rough time.

Please tell us how things went in the ER, and hopefully you will feel much better after their treatment.

Ann

Hello all. Thanks for your concern. I went to ER and got the usual "cocktail" of reglan, benedryl and toradol.

In the past all these have done is make me a little sleepy and may only reduce pain a litlle. I was beyong a "10" on pain scale when I went and I did get some relief so that when I left it was down to "6".

The NP I saw also called the on-call doc at my neuro office and he stated fir me to call office tomorrow and let them know that he spoke with ER staff and he then spoke with my neuro and for office to set me appointment in next few weeks instead of waiting until august.

Now to discuss the previous mention of suicide. I love life too much to do anything and as I explained to doctor in ER it was more of a statement of despair I guess cause I didn't know what to do and the pain was driving me crazy.

So the NP at ER gave me prescription for reglan and fiorcet to take to try to keep migraine at least tolerable. I came home and ate and then slept for a couple hours and was jolted awake by the pain again. I am debating taking pain pill now or saving them for daytime use. I have to go back to work on Thursday and don't need an uncontrollable migraine again. Maybe I will take a reglan now since I only have 5 of the fiorcet.

This brings me to another question for you all. Those of you with chronic migraines, do you still work and if so what type of job do you have?

Second question: has anyone filed for disability or know anyone who has? I am going back to work this week and am gonna try again to work as I don't want to go on disability but am afraid that is where this is heading. It's hard to sit for 9 hours a day and stare at and concentrate on computer screen while having people yell at you on phone and me having to talk all day.

Thanks everyone. Hope this finds you all well.

Thanks

Thank you for letting us know how you are. I'm glad that they were able to help you at least somewhat in the ER!

I do not work outside of our own business, and I am blessed to be able to work mostly when I can. I still have to push myself through the pain that is always there.

I have not applied for disability..maybe someone else can help you there.

Please take care, and I'm glad that you are seeing your neuro soon.

Ann

I work but my migraines are manageable with medication. I've been seeing neurologists for years.

Granted, I don't have a challenging job. And when the pain is bad I'm kinda a warm body at work or I'm definately not at my best.

But my migraines are not severe enough for disability. Although when they were daily for months, I wondered about my ability to work full time-they were just wearing me down.

I am glad that you explained that the pain was causing you to want to escape and that you value life to much to end it. I understand totally that pain is hard to bear.

I hope that your upcoming neurologist visit is helpful.

Just got a call from neuro office. (I was to call later this am). Doc wants to see me this afternoon. Praying he will be able to help. NP in ER last night mentioned going to pain management clinic. Not sure what that entails. Anyone had experience with that?

Tngirl - so glad that the ER was able to bring your pain down and that you are getting in to see the neuro today. Great news!

I work full time and have these blasted things everyday. I sit at a computer and do administrative type things. Not high stress but it can be loud (live in cubicleville and hear everything that goes on in the office) and the fluorescent lights can be killer. So I do earplugs (put only one in and it helps) and will bring sunglasses when I need to. The days that the pain is very high I work from home (my job is such that I can work anywhere on the planet with an internet connection and a phone). I have things to battle the symptoms, unfortunately they don't work (the nausea med works about as well as a tic-tac and I have no viable pain management - maybe takes the edge off) - a discussion I'm having with my neuro at my next appointment. I've gone through I don't know how many drug trials of preventatives, none of which have given me a day without an M.

I'm not to the point where I would go on disability. I still have good days where I function pretty normally but if I didn't have the job I do, I'm not sure how I'd make it. I miss at least one day a week (where I work from home rather than in the office) due to severe M (the weather drives the intensity for me). I know there are others here that are on disability and can speak better to that.

Pain management - well my neuro is a headache specialist and is lumped in with the pain clinic. They will usually work with you on managing the level of pain through various means of medication, lifestyle changes, stress management and other themes. I know others have dedicated pain management doctors whereas I don't so others are more likely to speak better than I.

Glad things are at least manageable today.

Becky

I forgot to mention in previous post that relief was short lived. I came home from ER and ate a little food and went to bed. Woke up thinking I had actually slept thru the night (I wish!!) but it had only been about an hour and a half. And the M was back with a vengence. Worse than when I went to ER which I wasn't sure was possible.

Not sure if it is rebound since never really went away completely or if meds only lessened for short period of time. Not gonna take fiorcet until after I see doc today cause after going thru my lists of meds I have previously taken he told me not to take fiorcet as we tried and didn't have good results.

Will update after doc visit.

~Becky

Becky,

I know what you mean. I have a triptan I take for the worst ones and at best I get 3 hours of relief and then it comes roaring right back often times worse (or so it feels). Some people love fioricet, my neuro doesn't want me to use it. It helps a bit but doesn't do anything more than my other meds anyway. Hope you get some good news from the doctor.

Becky

So I had my appt with neuro today and we talked about everything. We decided that since in past topamax worked for a few months we would try it again for a few months. At this point it couldn't hurt. He also gave me the new imitrex-it's the trans-dermal one with no needle. We also decided that to try and break this migraine he gave me trigger point injections. The pain had let up some and he said I should feel more relief tomorrow.

We then had Botox discussion again. He told me FDA may approve Botox for chronic daily migraines at some point and due to success rate he is personally sending appeal to my insurance company to have them pay for all if not some since I have tried everything. I told him if they won't pay all of it (he did confirm it will be $1000 for me every 3 months due to severity), I will in no way be able to get the injections.

He completely understood and said he wanted to be completely honest with me that I have tried every preventive and this new imitrex is last abortive to try but if I can't get rid of daily M it won't do any good. We discussed pain management and since he is headache specialist and works in pain management clinic downstairs as well he said with my type of migraines, pain meds will only make them worse.

So I am trying to go back to work this week and he advised me to be cautious as my job will and has in the past made the M worse. I just got off phone with my manager at work and made her fully aware of everything. I have decided to try and work up until my follow up appointment at end of July and if I'm still missing a lot of work we decided to talk about disablilty at that point.

So that is the update on the situation. My memory is shot (short term memory loss cause of migraines) so I think I remembered everything.

Just wanted to add my sympathies and concern as the others here have expressed. I know what you're going through, and I'll say again that focusing on getting better is your first priority, while the second should be getting in a position where you can comfortably focus on that on it's own. I don't believe you can solve it while working, juggling other worries and concerns, etc., but I still sincerely respect that you are trying your best to do both. I had some good friends that really supported me either way when I needed it the most, and I hope this helps you now too.

Your state disability program (if within the US) should support you during this time since migraines are becoming more common and better understood. There is still a problem with receiving support on a federal level, since they request you have a disability that you know will disable you for 12 months or more. It's something I tried arguing about before because of course we don't plan to be sick that long, but we never know. Nonetheless, state disability can be effective in giving you some time to focus on it outside of your occupation. If you are disabled more then 12 months, federal social security will supplement state insurance with their own program.

As far as effective medications, I've also really been put in an upsetting place with trying so many medications that I feel more like a guinea pig in testing then a patient. I think there is way too much misinformation or complete lack of info out there, so much that my most recent primary physician gave up after just a few weeks. The neurologist he referred me to however was a huge step forward. He must be the fifth or sixth neurologist I've seen since I was 7 though, and was the first that impressed me with his knowledge of migraines. Most other specialists I've come to expect little to no experience in this area. This might be something very important for you, is to find a specialist that has confidence in treatment options and willing to really get to know your specific symptoms and triggers. My current neurologist has been very thorough, and just his confidence alone might be a helping factor in my treatment. I think it can be extremely harmful when a doctor admits to a patient that they don't know what else to do. It might be honest, but we feel helpless enough as it is with a disability/illness this severe. You can't be with a doctor that says he doesn't know what else to try, because there are always more options. It might not be your doctor's fault necessarily, because we're all susceptible to self-doubt and limited by experience, but the important thing is other doctors will have a new perspective and might have a much different history with migraine therapies.

For example, has your doctor tried a combination of those medications you listed? Has he/she asked you to keep a migraine diary and bring it to him to review? Has he suggested alternate specialists for contributing factors, like depression, stress, diet, anger, etc. ? He might not even have the experience or enough confidence to suggest those options, but you don't want to rule out the possible effectiveness of a therapist/psychologist, stress management options, dietary specialists, and combinations of medications to treat your specific symptoms.

I'm currently on disability leave from work, and finally reaching a point where I am getting a couple days a week without a severe migraine. At the moment, what is starting to work for me is a combination of anti-depressant, propanalol, fiorinal when(if) I feel it coming, and medication for some of my other health issues to lessen their impact on everyday tasks. It took an internal medicine doctor to assist in finding a safe combination of those medications that has been the most effective so far. I also admit that we're still working on that, but the important thing is my confidence that something will work is improving. Research and advice like the information you are finding on these forums and at other sites, or via reading material helps a lot too, but you have to arrange a lot of time for that kind of research.

I think the next really important step for your therapy would be to find support that will help you for a little while until you can improve/reduce your attacks. Disability insurance or other support is so important for serious illnesses because migraines are extremely disabling. We only have a short amount of time each day/week before or after the attacks to absorb new information. If it helps, think of it as a pre-graduate requirement class for law school. You need a certain amount of credits in migraine therapy and prevention in order to get your law degree! The tricky thing is your class material is found in a variety of places, and your doctor won't always be the best teacher. But all of us here at least are behind you in achieving that goal, and will be till you succeed!

Tngirl83 wrote:So I had my appt with neuro today and we talked about everything. We decided that since in past topamax worked for a few months we would try it again for a few months. At this point it couldn't hurt. He also gave me the new imitrex-it's the trans-dermal one with no needle. We also decided that to try and break this migraine he gave me trigger point injections. The pain had let up some and he said I should feel more relief tomorrow.

We then had Botox discussion again. He told me FDA may approve Botox for chronic daily migraines at some point and due to success rate he is personally sending appeal to my insurance company to have them pay for all if not some since I have tried everything. I told him if they won't pay all of it (he did confirm it will be $1000 for me every 3 months due to severity), I will in no way be able to get the injections.

He completely understood and said he wanted to be completely honest with me that I have tried every preventive and this new imitrex is last abortive to try but if I can't get rid of daily M it won't do any good. We discussed pain management and since he is headache specialist and works in pain management clinic downstairs as well he said with my type of migraines, pain meds will only make them worse.

So I am trying to go back to work this week and he advised me to be cautious as my job will and has in the past made the M worse. I just got off phone with my manager at work and made her fully aware of everything. I have decided to try and work up until my follow up appointment at end of July and if I'm still missing a lot of work we decided to talk about disablilty at that point.

So that is the update on the situation. My memory is shot (short term memory loss cause of migraines) so I think I remembered everything.

Sorry Becky, but for some reason I missed your latest update before posting A scattered mind is my typical side effect from migraines But it sounds like your doctor is making a good effort at least, so changing doctors as I did (frequently)might not be the best thing depending on how you feel about it. Still, second opinions or personal research to supplement his information should be a big help. I'm glad to hear your work sounds professionally supportive of the situation. They're not trying anything like writing you up for absenteeism or loss of performance, which shouldn't happen but has to some people. You're being honest with them and that's all they can really ask for. Stay strong either way, and I hope you find something effective soon.

While my manager is supportive, unfortunately the company doesn't see things the same as us. My manager suffers from neurological problems so kinda understands. I only started working for the company this past November and unfortunately they require me to be there for at least a year before I can use FMLA or short term disability. Right now I am on unpaid leave of absence which started not because of migraines but because I had the flu and then caught pneumonia.

I am out of vacation- I have used close to 70 hours already this year all because of illness and mostly because of migraines. The company has an attendance system that deducts points from you each time you miss work. This is why I'm forced to work and can't really focus on my migraines at times.

I haven't checked into state disability. One of my biggest fears being out of work is that I will have no insurance which will once again put me back to no meds and no doctors. I had to quit my last job cause I was having a terrible time with migraines. No job and no insurance ate thru money in savings and I haven't been able to replace cause it seems I'm at the doctor every other week. Anyways the migraines weren't as bad as it is now and I went back to work less than a month after I quit that job. I am lucky in one way though. Because I have been so sick, not only with migraines but also other issues, I have never been able to move out on my own. In part cause I couldn't afford it with all the doctor bills but also because of some of my Illnesses require me to have supervision when it flairs up.

So I plan to go back to work either Friday or Saturday but because of he double vision and blurry vision I can't drive. Hmmm. Now his is a problem that just ocurred to me. Have to think that one through. Lol

anyways since i can't sleep I will check into state disability. At least that may reduce some stress on me. Thanks for that suggestion!!

Tngirl83 wrote:While my manager is supportive, unfortunately the company doesn't see things the same as us. My manager suffers from neurological problems so kinda understands. I only started working for the company this past November and unfortunately they require me to be there for at least a year before I can use FMLA or short term disability. Right now I am on unpaid leave of absence which started not because of migraines but because I had the flu and then caught pneumonia.

I am out of vacation- I have used close to 70 hours already this year all because of illness and mostly because of migraines. The company has an attendance system that deducts points from you each time you miss work. This is why I'm forced to work and can't really focus on my migraines at times.

I haven't checked into state disability. One of my biggest fears being out of work is that I will have no insurance which will once again put me back to no meds and no doctors. I had to quit my last job cause I was having a terrible time with migraines. No job and no insurance ate thru money in savings and I haven't been able to replace cause it seems I'm at the doctor every other week. Anyways the migraines weren't as bad as it is now and I went back to work less than a month after I quit that job. I am lucky in one way though. Because I have been so sick, not only with migraines but also other issues, I have never been able to move out on my own. In part cause I couldn't afford it with all the doctor bills but also because of some of my Illnesses require me to have supervision when it flairs up.

So I plan to go back to work either Friday or Saturday but because of he double vision and blurry vision I can't drive. Hmmm. Now his is a problem that just ocurred to me. Have to think that one through. Lol

anyways since i can't sleep I will check into state disability. At least that may reduce some stress on me. Thanks for that suggestion!!

Sorry to hear about the work restrictions. That's a tough one to work out, but hopefully if you can call EDD and ask about state disability in your situation, maybe that'll open some doors for you. I've been very lucky to have an understanding boss, and was able to get state disability because I was out of vacation/sick time. Any medical coverage or insurance you might have from work should continue if you are still able to return to work once you recover. If they let you go, disability and/or unemployment insurance is still available regardless, but unfortunately I don't know about keeping medical coverage. My past employers offered cobra to continue coverage at a discounted rate, but I'm really not too familiar with how that works. Might be another thing to research though, just for peace of mind if it comes to that situation.

Hi Tngirl83,

I'm sorry to see that you're having such a touch time at the moment and know what it's like to try loads of different meds with little or no improvement all the time worrying about work and the prospect of no money coming in.

I've had chronic migraine for years and worked as a senior social worker/social work manager here in the UK. I had a very sympathetic boss and we worked things between us to enable me to carry on. I worked in a specialist area and she felt that my value to the team out-weighed the difficulties caused due to my health absences etc. There were many times when all I did was fill the chair for the day and then someone drove me home after work.

Things took a further turn for the worse at the end of last summer and this coincided with my boss preparing for her retirement. In December, after a 3-day migraine, I tried to return to work but was told to go to the doctor to be signed off work (that's how things work here in the UK) and to come back when my migraines are at a level that will allow me to work reliable and regular hours. Unfortunately I haven't worked a month without disruption for some 6 or 7 years but have relied on catching up in the evenings, working weekends and taking leave to complete projects as a matter of course.

I'm still no better. I'm still having disabling 2 or 3 day migraines about once a week with less serious migraines most other days. I have no preventative meds that work and no abortive meds that work for the migraines which I wake with. I'm still signed off work. The situation with work is that I am likely to be "dismissed on the grounds of incapacity". I have 31 years continuous employment but have been told that I am unlikely to qualify under their ill health retirement scheme as migraine is not seen as permanent ill health!

Sorry about the rant but I'm feeling old and grumpy! Hope things look up for you soon.

I had Botox and it didn’t work at all. The only good part was that there were no side effects. The bad part is that I did spend $1,000 just on the Botox and several hundred more on the doctor’s visits and testing. This was after I exhausted the normal route of antidepressants, antiseizures, blood pressure meds, etc. He injected 3 sites he felt were trigger points – in between my eyebrows, at my temples, and at the base of my skull. There was absolutely no difference. But it does work for some people.

I manage to work but I also use most of my vacation time to be home with a mig. I also sit at a computer all day and fall asleep several times a day but have yet to get caught, thank goodness! I don’t live far from work so I drive when I probably shouldn’t, take painkillers and time them to wear out before I drive home. I spend a lot of my lunches napping in our conference room, and have tossed my lunch more than once in the office ladies’ room. It’s what we have to deal with.

On the suicide thing, I know how you feel. I once had to walk out of my house and sit in my backyard to keep myself from doing anything. But I had to think of the people who would be upset, my parents and kids, and not let myself do it. Someone just gave me the name of a pain management physician and I will try him next because she had great results with him. I am currently treating at a center for fibromyalgia and chronic fatigue syndrome (I have Epstein Barr) but am seeing little change in the migraines. I just recently found this forum and it has become my new lifeline to a little sanity. Hang in there and keep doing what you’re doing. Try everything you can and don’t let people get to you. They just don’t understand. It seems like the people here are going through it too and can really sympathize. Good luck.