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Depakote and Depakote ER

  • By Ellen Schnakenberg

    Hi 3kidlets,

    The first and most important question is to ask you if your son is seeing a qualified headache specialist? This is probably the first and very best place to start, because specialists are up to date on all the latest and greatest research, treatments and diagnostic methods available. Your son will be much more likely to be successful while under the care of one of these kinds of physicians.

    Second is to try to figure out what is triggering his attacks. For example: you may not be aware that chlorine is absorbed through the skin and mucus membranes, as well as inhaled. When this happens, it blocks the receptors in the body intended for iodine. Iodine is the fuel for your thyroid, and with those receptors blocked, thyroid dysfunction can result. Not only is thyroid dysfunction an extremely common comorbidity for Migraine, but it is also a frequent problem with dedicated competitive swimmers. (I swam competitively for about 11 yrs). Thyroid dysfunction is usually one of the very first things a headache specialist will check when a patient presents with increasing Migraine attacks, because it is a potent trigger and exacerbation of our disease.

    It could be something as simple as eating too much MSG laden cafeteria food at school, but it could be something that needs to be dealt with medically, like my thyroid example.

    As to Depakote – I was on this medication without any success myself. Although I did lose a lot of hair (I considered shaving my head for about a minute) the medicine did not seem to affect me mentally as badly as some others. It’s important to note that not every patient is going to be the same though. We all act and react differently to different doses of different medications. What works for one will not work for another. Depakote is not usually considered a first line preventive to try though.

    You will not like the side effects of any of the preventive drugs. That is a fact of life for us. We have to weigh the pros and the cons – which is worse – the Migraine attacks or the side effects. Only you and your son and doctor are going to be able to decide this.

    In the meantime, you don’t want his school and swimming to pay a price for his Migraines. I highly suggest he begin keeping a journal, not only for his Migraine attacks, but also how he feels he is doing in school and at practices. http://bit.ly/hgE7DK Talk to teachers and coaches and explain the situation and ask them for weekly feedback so you can nip any emerging problems in the bud.

    You can request and receive an IEP for your son – this is a legal requirement of public schools. They’re not easy to get, and you have to have a pretty good idea of how to help your son before you get one, but it is an option.

    One other thing I would check – his caffeine consumption. As a swimmer, it is very tempting to drink a soda before practice because it makes you able to swim a little faster and last a little longer. If he is consuming any amount of caffeine, this could be part of the reason for the escalation in attacks.

    Also, look at how frequently he takes pain meds. If he is taking more than a couple doses per week, he could be suffering from Medication Overuse Headache. http://bit.ly/ijgOEO This is easier to treat than Migraine itself.

    In the end, the best thing to do is to have a frank discussion with your son. He surely has an opinion what he wants to try and how. He is going to have to be proactive about his Migraine disease, so starting right now is going to help him a lot in the end. 🙂

    I hope some of this information may have been at least a little helpful…

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  • By tucker

    Hopefully you have a solution by now since it’s been 3 months. I am just starting on Depakote after being on topamax (up to 500mg) for 7 yrs along with many other adjunct meds in the meantime.

    As for your son, my son is 12 and has had true migraines for several years and probably had abdominal migraines that were diagnosed as stress related stomach problems (given pepcid) when he was about 5-8 yrs old. Our family doc is great with migraines in general and helped me for many years until I maxed out his knowledge base and what he could do in his office. But he started my son on periactin and it has made a world of difference for him. He went from almost weekly migraines with vomiting to rare and just mild headaches now. I haven’t even gotten a call from the middle school nurse this year! He has always been underweight and it’s brought him up to the 25% at his last checkup (from 5-10%) for most of his life so his weight gain wasn’t a problem. He plays lacrosse now which helps with exercise.

    Periactin is another option with far less side effects. He is down to a daily dose at night with an optional dose in the morning if he starts having more headaches. He did start out with twice daily dosing.

    I too am hesitant to take the depakote but have had a bevy of medical problems and my family doc is really wanting me to decrease and/or get off the topamax due to severe weight loss in my case among other things. So much so that he called the neuro and had a conversation with them.

    I was tapering down and trying to use zonegran but it wasn’t helping. I think they are just too close. So we have 3 meds as a plan and depakote had the best track record so I decided to take the chance and go with it. Desperate times often call for desperate measures…..

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  • By tucker

    Another thought is to make sure he is eating right – plenty of healthy snacks while he is training and on the road, etc. When my son started middle school this year and he dropped that mid-morning snack, he started getting midmorning headaches again. Mom’s advice fell on deaf ears to bring a cereal bar, etc to eat between classes, but good old doc reinforced it. He’s got kids a few years older than mine so he’s all about the common sense (or lack of) of middle school boys! :):) So don’t be afraid to seek out the advice of your doc, the coach, a dietician, anyone who can reinforce what you have been saying about keeping his calorie level stable especially if he’s training hard.

    Also, with indoor pools, if the ventilation is not adequate or the chlorine is too high, that smell can be a huge trigger for migraines and it may just be that he is recently becoming more sensitive to the smell of it. As you know that smell can linger on clothes, towels, etc for months! It’s a huge asthma trigger too. So make sure you wash his stuff ASAP to get rid of any smells you can so they don’t linger around the house. Double rinse if you need to. (I was a swim instructor/lifeguard for about 10 years back in the day and have asthma and a kid with asthma who had one of his worst attacks from an indoor pool so I speak from experience!)

    Good luck! We gotta keep these kids going what they love to do and healthy while they do it!

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  • By taralane

    Hi -I am being weaned off Topirimate (Topomax generic) to go on Depakote as a preventative. I have been OK this time around on the Topomax, much better than the first time, and it has been very effective at reducing the severity of my migraines. I still have them every day, but I don’t get the really acute ones as often as I did without the Topomax. I have had migraines for 43 years, and my body is very sensitive, so I have to be very very careful with medications. My body will reject them very quickly and I can go into a rebound situation, even if I have been following every recommendation to the letter, and being more conservative than my doc would recommend. My biggest fear of course is being without any meds at all, which is a real problem since I have been on so many meds, and so many of them are in the “No” category right now. I have not had depakote since the early 90’s. I was doing well on the drug and it was easing the really bad pain I was in very nicely at about 1750mg/day, but then my hair started to fall out in clumps, and I had to go off it.

    We are not going up anywhere near that dose this time – only to about 750, but I am still worried about that side effect, because once you have the side effect, you are in that 10%, and as far as I know, you don’t come out of it. My doc is suggesting I take selenium and zinc to prevent hair loss, but I am not convinced. I have very, very thick hair, and I do not want to lose it. (It is my vanity I know, but I like having it).

    Do you have any experience with this, or thoughts on the matter?

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  • By Ellen Schnakenberg

    Yes, I do. My hair also came out in patches while on Depakote. It was so bad that my hair dresser asked me if I’d like a private appointment after hours. We talked about shaving my head. I was in so much pain, I was willing to look like a cancer patient to get better. Unfortunately we couldn’t ever get high enough to really make a difference, so all that was for nothing.

    It’s funny, I never considered myself a vain person. I always thought I could handle shaving my head and buying some fun wigs, do-rags etc and having fun with them, but when I was actually in the chair faced with the prospect of taking that razor to my scalp, I was shocked at how emotional I got. My hair has been my trademark since my high school years. I found I was a lot more attached to it than I realized!

    I did find that, although my hair was very patchy, people could really only see it if the wind blew, or I put it up in a pony tail. My daughter was very conscious of it and often would gently put my tresses in order to cover up the bald parts. (that’s such a vivid memory for me) Otherwise it was long (still is) and covered up the bald parts for the most part.

    Is your hair long or short?

    In the end, I knew that, as attached to my hair as I was, I was also desperate for relief. If Depakote had worked for me, I would have shaved my head, even as hard as it was to contemplate. Why? Because at that point I was so bad Migraine-wise that I wished for death to take me. I would gladly give up my hair to get my life back, if that was the price I had to pay.

    I would highly suggest taking a really good probiotic as well as a biotin and methionine supplement. Of course you should run that by your doctor first. Here’s why:

    Probiotics help re-populate the good bacteria in your gut. These bacteria are partially responsible for the production of biotin your body needs for healthy hair, skin and nails. I suggest the biotin and methionine because excess biotin will be shed by the body, but in case you’re not producing enough on your own, it will be there for you. Biotin also needs methionine to bind to it to help your hair and nails. Biotin alone is not enough. You may have enough methionine in your body so long as you aren’t B12 deficient, but to be sure, taking a combination supplement would be prudent. Excess methionine is also readily shed from the body, so not usually considered much of a toxicity risk.

    Additionally, I would add that by taking selenium, again, you need methionine bound to the selenium for your body to use it for this purpose. There are several types of selenium, but Selenomethionine is the type you’ll want to look for in the pharmacy. The cost is the same, but it requires no conversion in your body and won’t deplete those methionine levels in your system.

    Also, Depakote is known to alter thyroid hormone levels, so keeping an eye on those is important. Getting a baseline before starting therapy is good, so you know where your “normal” levels are and you can work to keep them there. Just because the test falls within the lab’s stated “normal” range doesn’t mean it’s YOUR normal. Very important to know.

    Also, valproate levels in your system should be monitored regularly so it doesn’t hurt you. Talk to your doctor about this so he doesn’t forget to keep an eye on you as you go through your treatment/trial.

    Good luck. I really hope this is helpful for you. Even if it only helps for a short time, at least that bought you some time and you can then look at other options. Hang in there… let us know how it’s going 🙂

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  • By taralane

    Thanks for the information and I will post again as I get further along. My hair is about 2″ above shoulder level, but I am trying to grow it longer, because I like to wear it up in the summer, although I am having trouble finding a hair dresser who will do what I ask – that is don’t thin it, don’t layer it, just blunt cut it, and otherwise leave it alone. I am also letting the gray grow out, because I am tired of dying it, and that is going pretty well, I have about 2″ of pretty white hair, so, razoring it off is not an off the wall solution. A wig is cheaper than my hairdresser and all the things she does that I ask her not to do.

    I have had a hypothyroid condition all my life. It has grown less and less as I have gotten older but that is good to know, and I will get a blood test to get it checked, along with the B Vitamins, and everything else. I am also having terrible GI tract problems. I went in for an endoscopy and colonoscopy. The endoscopy was fine, but the colonoscopy protocol was not strong enough to clear me out, so I have to go back in 6 months for another one. I will call that doc about the probiotics. Right now I am on a diet of chicken broth, white bread, white rice, bananas, apples and chicken breast. I have found I can handle a few eggs a week, but 2 broccoli flowers will give me the runs, so I am low on veggies, and grains do the same thing. I get migraines from all milk products, and of course, caffeine, chocolate and the other usual suspects. I had thought after first taking probiotics that they might help the diet problems but they did not, so I’ll call my gastroent. doc and talk to him about all this as well. I appreciate all the info.

    I’ll let you know how it goes. And I am very vain about my hair – but at this point, if I could get rid of all the pain, and just be bald, I think I’d be bald to get a life.

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  • By Ellen Schnakenberg

    I know the feeling hon, I really do. You are the only one that can make that decision, and you have to be truly ready to do it when and if the time comes. I also suggest asking your hairdresser for a private after hours appointment – they are used to doing this, often for cancer patients. Also, take a bestie or family member – someone who you trust to hold you hand and be supportive thru the process… one who won’t cry when they see your hair falling on the floor, but will laugh with you as you choose a couple fun wigs and do-rags.

    One other thing… Locks of Love will take hair that doesn’t have too much gray in it. I always felt that if I had to shave my head, I’d like to give my hair away to someone else who might be able to use it. My problem now, is too much gray, lol.

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  • By Anne marie

    Has anyone had the experience of slightly wavy hair turning Little Orphan Annie curly from Depakote? Does it ever return to normal when you switch to another medication? Hating the perm look in NJ!!!

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  • By taralane

    Hi AnneMarie:
    No – have not had that one, but if the curls were not frizzy I would take it! I live in No CA and it is quite dry here. We don’t have the humidity that you suffer from on the East Coast. I would think it would turn back if you stopped the depakote. Most of my side effects have left – some slower than others – when I stopped taking any medication, but I would check with your doc to be sure. Good luck!

    For Ellen:
    I have completed the switch from Topomax to Depakote I wrote about 2 months ago. I had to also drop Trileptal, and between the 3, it was one of the worst med changes I have ever made. I was nauseous for at least a month, and lost all my appetite, as well as my energy. The depakote was titrated up to 500 mg. where I held for 4 weeks. That seemed to do nothing at all to stop the acute migraines which became much more frequent as soon as I was off the Topomax, and did not stop until we raised the Depakote dose to 750mg, which is where I am now. It seems that the acute migraines are less, but the daily migraines are about the same. No hair loss yet, thank goodness. I am still having auras before every migraine, no change in that symptom with the depakote. It also makes me very tired, esp. in the am, and I am not too crazy about the way the drug effects my system.

    All gastrointestinal problems are back, and I have not yet gotten all the probiotics, biotin, etc. in place so that is the next thing I have to do. I am looking for a good source, but haven’t found an inexpensive one that is reliable yet so I am still looking. All this gets very expensive, and my funds are quite limited. I talked to my doc about all the vitamins and blood tests, and he did not think they were necessary, but I am going to do them anyway since it has been about a year, and I normally check my TSH levels yearly since I have taken synthroid since I was 23 yrs old.

    I’ll let you know when I have more info, but I don’t really like this drug. I can feel it running through my bloodstream like a buzzing in waves and it is very disconcerting. Esp. when I still have the migraine!

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  • By Ellen Schnakenberg

    AnneMarie – When I was on Depakote I did lose hair. It came back fairly normal. However, keep in mind that my hair is naturally really curly anyway, lol. Looking online, I see many references to the side effect of curly hair with Depakote, though their reliability might not be the very best.

    There is a condition in chemotherapy patients that happens as a result of their meds… their hair falls out, but when it grows back it is often curly. It happens so frequently it even has a name: Chemo Curls.

    I have also been told that cortisol levels can also influence human hair in this way, although I can find no information to back this up. Horses with Cushing’s Disease (a problem with cortisol production) grow curly hair that doesn’t shed.

    Essentially what I’m saying here is that it might be a good time to see your doctor to be sure you are experiencing optimal health and that the curly hair isn’t the result of something else going on in your body right now.

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  • By taralane

    Hi Ellen –
    I just posted a question about auras associated with Depakote in the Aura section of the Forum, so i won’t repeat it here.

    The Depakote ER is definitely working for me, although I am getting the disturbing auras, and I have not found a probiotic that works with my system, so I am on a very bland diet and have been since January 2012. I still don’t like the Depakote, but am thankful to have a lot less pain. I am hoping the tiredness goes away with time.

    I am still having migraines every day and they still wake me up at night but they are not as severe as they used to be, and I can take an Axert or something, and be fine by the morning. I do tend to rest for the day when that happens because i find that if I don’t, it all has a much bigger reaction on my system.

    My hair is starting to come out, but not in patches yet, so i am hoping that perhaps I’ll avoid this. My head itches like crazy and I have a hard time not scratching it all day long! The allodynia seems to have calmed down as well with the Depakote, for which I am really grateful. That is very very painful, and who needs one more pain source when I have so many others to control.

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  • By taralane

    Hi Ellen,
    Well, my hair is starting to fall out now, and I am getting migraines – really strong ones – breaking through the depakote. Additionally, it makes me very very tired, and I am having a lot of trouble managing what is too much or too little in one day.

    If I set the alarm I can manage to get up by 10 am or so, but if I don’t, I will sleep until 1:30 or 2:00 pm in the afternoon. I want off it but my doc thinks I am better on it, and need to give it a longer try. Since I am getting the pain breakthroughs, I don’t want to take it and am really fighting this one.

    I hate also how it makes me feel – like my veins are burning. I can feel the meds running through my body in waves which is uncomfortable and often wakes me up. I think my doc is hoping this will go away, but so far it has not. Did you have this side effect when you took the Depakote?

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  • By Ellen Schnakenberg

    hangingbyathread – Here are some things you might want to consider:

    Sleeping in late could be triggering additional Migraines. I know it’s hard, but can you force yourself to get up at a normal schedule so you’re positive this isn’t a trigger for you while on Depakote?

    Depakote side effects usually get better with time. The fact that you are talking about breakthrough Migraines tells me there is a good chance it might end up being helpful to you. I don’t know your dosage, but being at the *right* dosage to be useful for Migraine needs to be maintained for about 3 months to know if it will be helpful or not, or if the side effects are going to outweigh the benefits. The sad fact is, everything we take has side effects. The hard question is, which are we willing to live with and which are worse than the Migraines? I was desperate enough that I was willing to go bald if it would have helped. I wasn’t willing to let this trial go early without knowing if it might actually have been helpful. I always encourage patients to give a medicine a full trial unless you truly feel that there is no hope for them to get better and that there is no way possible for you to live with them.

    Yes, I was tired all the time. That part did get better, but it took time. A friend on the drug told me it took about a year before she felt normal energy wise again, but it was worth it. She was on a higher dosage for seizures.

    As to veins burning, that isn’t something I have ever heard of nor did I experience. I did get “waves” that I couldn’t explain when I was on Topiramate, but that was because I was on too large a dosage at the time and hadn’t titrated up the way I really should have to eliminate those issues. Has your doctor talked to you at all about backing down a bit to see if the side effects are lessened, and going up a little more slowly??

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  • By One2gh

    I was on Depakote and Elavil and gained 110 pounds in 18 months, and it didn’t work! I was still having 20+ migraines a month. As a young person I would start sending his lunch to school and start reading labels. MSG is in so many foods. Especially foods kids like to eat…..Cheetos, Doritos, certain chips. Also the sulfite and sulfate are in sandwich meats are triggers. My neurologist had me read a book Heal Your Headache by David Buchholtz. It is very enlightening and it helped me identify my triggers.

    Good luck with your son. I am a long time chronic migraine patient and my 22 year old has had migraines since he was 12. The only thing worse than a migraine of your own is watching your child suffer with one. Best of luck!

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  • By taralane

    Ellen – I just read your article(s) on thyroid disease I and II. I have hypothyroid disease which was diagnosed around age 23-4. I am now still on Depakote at 750 mg/day. All of my daily migraines and acute migraines have broken through this dosage. My hair is falling out, and I know even if we go to a higher dosage (the highest I have been on is 1750mg/day in the mid 90’s) my hair will come out in clumps, and it will probably not help my migraines, as my body just does not want to accept any medication for more than a couple of months before it overrides it. I am sending all my information to a new migraine specialist, and am planning to get off the Depakote while I still have some hair left (although a platinum wig may just make me feel great, who knows?). My question as to do with seleniumethionate which you suggested initially for helping me keep my hair, and also came up in your article about thyroid disease.

    Can you tell me where I would look for dosages to take of this compound? I do not have an endocrinologist that I see, but will find one to check out where my thyroid really is. The reactions with the Depakote and hypothyroidism may be connected somehow, and I would like to find out. It also may be why no migraine medications will get rid of the pain more than once and if I am lucky I can use them in rotation over a period of 2-3 months before they start giving me a rebound and I have to let them go. I usually cannot go back to them either because my body has the memory of an elephant, even if my brain does not.

    Any suggestions of where to go?

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  • By Ellen Schnakenberg

    200 mcgs daily was found to be effective in lowering thyroid auto-antibodies in many patients. It is needed for conversion of T4 to T3 (the active metabolic hormone)and is needed in concert with biotin for formation of hair, skin and nails. Most hair vitamin products have the appropriate ratio included in each tablet/capsule.

    Remember though, enough of a good thing is a good thing. Too much of a good thing can be dangerous.

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  • By taralane

    Thanks Ellen. Do you have an online vitamin place you order from where I can find these things? I have looked at a few on the web but have yet to find SeleniumMethionate as you suggested. The best prices I have seen are on a website called “Vitacost”, but they have everything individually.

    Not a problem, because I can take everything individually, but would love to know a source for SeleniumMethionate, and I have not been able to locate in any stores where I live.

    Thanks for all you do for us. You have really been helpful for me on this topic which is an extremely sensitive one. And I know about wanting to jump out a window because of the pain because I have been there more than once. I am not in that mode right now, but I send you lots of empathy and understanding on this one. I hope you never have to go there again.

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  • By Ellen Schnakenberg

    hangingbyathread – I can’t recommend any specific brand or store etc, however it might help if you look for Selenomethionine as that is the correct name for it. I’ve seen it at Walgreens etc, and most pharmacies can order it for you if you like. That might save you some postage 🙂

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  • By andreapierce

    I was prescribed Depakote 1000mg daily to help lessen the frequency/intensity of my migraines. It did not help and actually caused damage to my liver.

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  • By andreapierce

    Unfortunately, no. I have tried other anticonvulsants like Topamax, beta blockers, calcium blockers, several antidepressants with no luck. I have seen my family doctor, a neurologist and now go to a pain clinic. I have had MRIs (both regular and one for blood vessels), CT scans, blood work, sleep apnea test, tests on my hormones by an Endocronologist and all have come back normal. I have eliminated Aspartame & MSG (which I have established as positive triggers). I cut back caffeine to no more than one cup of coffee or black tea a day. Eliminated sugar, I use non sweetened or products sweetened with Stevia. I do not eat hot dogs or lunch meats, I am semi-vegetarian. I rarely eat aged cheeses. I do not drink alcohol of any kind and I do not smoke. I am not around any smokers. I do not wear any strong fragrances. I am currently trying to work gluten out of my diet. I rarely consume any chocolate. I do try to get some exercise because the migraines come all the time though I rarely can even get out of bed or out of the recliner. I have gained 80 pounds in the last 3 years so I really need the exercise. I also have unexplained fainting that has caused several head injuries and because of that my doctor has ordered me not to drive. My neurologist said “some women who have migraines faint” and that’s all I got out of that. I have had my heart monitored at the ER, it was fine. I have also been diagnosed with Raynaud’s Syndrome. I don’t know what to do at this point. My current meds are: Imitrex 100mg tabs, Percocet 5/325mg tabs (x 3 with Imitrex for migraine), Xanax .5mg x 2 daily, Phenergan 25mg tabs as needed for migraine (nausea), Citalopram 60mg daily (antidepressant) & Ambien 10mg tabs as needed (to knock me out for relief of the migraine if nothing else works). I am 35 but feel like I am 90. My husband is the only one working now and we have 3 children. My 17 year old daughter starting doing Virtual School (on the computer) so she could be home with me to watch her 5 year old brother and in case I fall and get hurt badly. She has had to pick me up and clean the blood off me more than once. I can’t do my housework so that again fall on my poor daughter. My husband works for himself but he works 6 12 hour days so he can’t help out much around here. My daughter and 13 year old son had to quit karate because I could no longer drive them. My daughter has her permit but this just makes her have to chauffer me around to doctors appointments and to the ER. I’m a mess and I don’t know what to do about it. Sorry I poured it all out but I really have no one to talk to about this.*I forgot to mention that my husband paid $2000 (money we didn’t really have as extra) for Chiropractic treatment for me also and that did not help either.

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  • By Ellen Schnakenberg

    andreapierce – I can see several things here that we can talk about.

    First an perhaps most importantly is the medications you’re currently taking. They are known not only to contribute to the chronification of Migraine, but also something called MOH (Medication Overuse Headache) which is a different headache disorder that Migraineurs seem particularly prone to get. Once MOH sets in, triptans tend to be ineffective. Here is more information on MOH: https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/ and here is more on the chronification of Migraine: https://migraine.com/blog/will-my-chronic-migraine-ever-become-episodic-again/

    Additionally, some of these medicines can cause orthostatic problems etc. It isn’t impossible for fainting to be comorbid with Migraine, but it isn’t a usual symptom either. I would be much more concerned about addressing this as a potential separate issue as it can certainly lead to disability.

    Someone very close to me had similar issues. Was diagnosed with syncope and given a prescription for some scary meds. Instead of taking the diagnosis for what it was, we waited and had some other issues looked at as well – symptoms of low thyroid. Her doctor said her labs were “fine” and so we ended up at an endocrinologist who immediately began treating her despite her “normal” labs. Then he told us “What’s normal for one person isn’t for another”. Indeed, once her autoimmune thyroid condition was appropriately treated (for her) the condition vanished. It’s sad we didn’t catch the error soon enough though, as she did end up with mitral valve problems and some other issues that won’t ever go away.

    I’m not saying this is your problem – that would be silly. We are all very different. Some people have nervous system problems that can cause them to faint. Other conditions can also cause them to faint. However, when I hear of multiple symptoms that could also indicate a problem that is so terribly prevalent as autoimmune thyroid dysfunction, I do tend to urge patients to seek a second opinion OR ask their doctors for a clinical trial of thyroid supplement to see if it might be helpful to them.

    Another valuable piece of advice, is to get and keep paper copies of all your labs and images. Keep them in a binder so you know what YOUR numbers are and can keep an eye on them as they fluctuate. You may find patterns where your doctors won’t. It allows you to begin discussions that may be important to figuring out your puzzle.

    I hope you’ll get back with us and let us know how you’re doing. In the meantime, here is a link about Migraine and autoimmune thyroid disease: https://migraine.com/blog/migraine-triggers-and-co-morbidities-thyroid-disease-part-1/ Don’t forget to click on part 2! 🙂

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  • By andreapierce

    Thank you for your input. I do have a question though. I did read the article on MOH and maybe I missed it but if this would be one of the issues I am facing how do you break the cycle and get your meds working again for you? Do I just try to make myself cut back on my meds? Is it too late for that now? Will these same meds work for me even then or will I have to use a totally different regiment of drugs? I could make a follow up appointment with the Endocronolgist that did the hormone testing for me and discuss the issues you pointed out. The issue with the fainting it that I seem to have the most injuries to my head and I am afraid (in addition to the increased head pain) that I am eventually going to get a serious injury. I have had mild concussions from them but have not needed stitches yet. My daughter takes pictures of my injuries because it helps to document when I faint/where my injuries were/how often I am fainting. The doctors act like this is silly but it happens so often (7 or more fainting spells in a week) that I figured I should keep track of what is going on. Addressing my weight issue. I went to a medical weight loss place and paid $85 for a weekly shot of vitamin B and HCG shots that I gave to myself. They put me on a 600 calorie a day diet and I did lose 25lbs. My issue is not over eating, it is no exercise. I only eat about 600 calories a day anyway because of my pain and/or nausea. I stopped going because after the 25lbs the weight loss just stopped. I have tried walking (fainted in my driveway and my 5 year old found me) and a stationary bike (fainted and fell off hitting my head on the patio window). So exercise is very hard for me. I do know I have low blood pressure, normal for me is as low as 70/50 and high for me is what most people consider normal. My mom has the same blood pressure issues, hers has always been low. She has had some issues with fainting but only in the last couple of years and she is in her 70s. Also, my paternal grandmother had severe migraines but neither of my parents have them. My mom has other neurological issues though (her doctor said she has “mini” seizures, but not epilepsy). Right now I have an ovarian cyst which is also causing me much pain. In 2010, I had to have 2 cysts removed (luckily not cancerous because the same grandmother that had the migraines also had ovarian cancer at my age), it was only 3 months after my surgery that my migraines became so severe. I have had them since 4rth grade but they didn’t get serious until I turned 19. Then I would get them 2-3 times a month and take 1 Imitrex tab and they would go away. I had one that required an ER trip and one where my mom took me to my doctors office and he gave me something that made me very sleepy. In 2005 I had a 4 month period where my migraines were coming almost daily and were bad. At that time (different doctor) my doctor prescribed me Vicodin to take with my Imitrex and Depakote (which did not damage my liver at that time and seemed to help me). After those few months they went back to normal. So when they started getting bad in 2010 I thought I was going to be going through a short period of severe migraines. I also started having gallbladder attacks and had to have my gallbladder removed that year so it was a bad year medically for me. To recap, surgery for ovarian cysts happened in February 2010, migraines started becoming severe in April 2010 (also started gaining weight at that time), in September 2010 the gallbladder attacks started and in December of 2010 I had my gallbladder removed. I now weigh 210lbs (the most I have ever weighed in my life) and I am only 5’2. I am very concerned about this because so far I have dodged the bullet on other health issues such as diabetes, high blood pressure etc. I just read the article on here about Migraines & Weight. It makes me especially upset that I have gained this weight and can’t lose it after reading the article that says I could have less migraines and/or less severe migraines. Just for the record too, I did try to take my meds only 2-3 days a week but the migraines became so bad that it was either take the meds or go to the ER. I would estimate that at least 15 of my migraines a month are bad enough to go to the ER but we all know that isn’t going to happen. I know it looks like I have a low pain tolerance but I am telling you that I have a high tolerance. I do “suffer through the pain” and “tough it out” as my doctor tells me to do when I say my meds aren’t working. If my meds aren’t working and I am in a constant state of pain then how am I not tolerant to the pain. On top of all that my husband suffers from 3 or more migraines a week (which he can take Exedrine Migraine or 1/2 of a Vicodin and get rid of it). He doesn’t understand how he can “work through them” and I can’t and how he “has pain but still does what needs to be done” but I can’t even get out of bed to do housework. It causes major relationship problems, to the point where he has suggested that I “go live in a nursing home”. Both our sons, ages 13 and 5, have migraines also and it makes me feel guilty like it is my fault because I read that when both parents have migraines the children have a high percentage rate of having them too. My daughter is the only one in the house who does not have them but her father is from a previous marriage. I have a Social Security hearing in May. I have been waiting since November of 2011 just for the hearing. I don’t know what will happen but I am hoping it gets approved so I can get Medicare because my doctor bills and prescription bills are so high. I know this though, all the money in the world can’t fix my migraines. You can get better or different doctors but if they can’t help you then they can’t help you. I don’t think about killing myself but do wonder what the point of living this way is.

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  • By Ellen Schnakenberg

    MOH is difficult, because if you’ve been in it a long time, it can take a long time to get out of it too. Some patients don’t get out of it. There are some treatments that seem to be helpful while in MOH – – sometimes. This is something you will want to talk to your specialist about and plan very carefully how you want to deal with it if it is indeed an issue for you.

    Mild concussions are suspected to be worse for Migraineurs than serious concussions, did you know that?! Please be very careful as this could be adding to your trouble. Please consider wearing a helmet (yes I know, totally NOT glamorous at all) to protect yourself when you faint.

    B12 injections are SO easy to give to yourself, and a year’s supply costs approximately $20. Here are more details on this: https://migraine.com/blog/what-can-i-expect-from-b12-testing-part-1/ Testing should continue periodically for good management.

    So many of your symptoms really do sound like they are metabolic though. I would really urge your endocrinologist to investigate this further. Unfortunately, there are some that specialize in diabetes and other serious issues and don’t take thyroid issues seriously at all. It may in fact take finding another doctor or even testing yourself. That said, you did have some testing done, so get copies of those records and compare those results by doing research that can help you determine if you need further management.

    You mention having a high pain tolerance and your ability to “suffer through the pain”. There is a difference between a high pain tolerance and being stoic. It really has been found that most Migraineurs who have a lot of pain actually have changes in their pain pathways that make us experience pain more profoundly. That said, we have also learned how to function despite this pain. What would incapacitate someone else, is a regular day for us. Does that make sense? The more we experience pain, the easier it is to experience. Here is a little bit about how this happens: https://migraine.com/blog/migraine-allodynia-and-central-sensitization/

    It’s obvious to me that you need a better doctor to help you. Here is a link to see where the nearest specialist is: https://migraine.com/blog/looking-for-a-migraine-specialist/ There aren’t a lot of them, but they are well worth the trip it sometimes takes to get to one. I travel about 7 hrs to see mine, and even my hubs thinks that is a bargain. I hope you will consider seeing someone who is going to be able to help you. You are not alone, and you are not odd. Your hubs is lucky, so far. But taking pain meds 3 times a week is the most he’ll probably be able to get away with without suffering MOH himself. With that many Migraines (It really doesn’t matter how severe they are) he is potentially going to have more problems as well.

    Yes, we all feel guilty when our kids have Migraine. Just having one Migraine parent is enough to make the situation much more likely for our children. But remember, you didn’t know this, and you didn’t stop and think to yourself “Gee, I think I want my kids to have Migraine, I think I’ll mix a little Migraine Mojo in their genetics so they’ll suffer too.” It’s not your fault. It happens to a huge percentage of people. Where the good meets the bad, is when parents begin to decide what to do re: their family Migraines. Remember, your kids are learning how to deal with their Migraines, those of their friends and other family, by how you deal with yours. You can teach them perseverance, hope, strength and courage, or how to be miserable and suffer. The choice is always ours.

    You’re here looking for more information, and I feel like you just need to get on the right road. Please think hard about seeing a specialist – someone new to get a different perspective on treating your attacks. This is not a failure of you. It is a failure of your body.

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  • By dcd230

    It’s concerning to read all these posts about Depakote not working. Has anyone had any good experiences from it? I just took my first dose of 250mg tonight which will be twice a day.

    I had prolotherapy with sugar water today to break up the headache I was left with after the initia migraine in which I took morphine 2mg to stop it.

    Now my doctor is working on a preventative and it is my first time with this approach as I seem to be getting barometer change migraines in the summer.

    I had PFO closure by Dr. Thompson about 7 months ago and I think that helped with food trigger type migraines but I am still very careful about my diet as much as I can. I still seem to eat something at times that might trigger but it’s hard to know for sure if it was that milkshake at the diner that might of had some weird sweetener for instance.

    Any positive stories on any medications that worked would be welcome.

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