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Welcome to the Depakote and Depakote ER Forum

Hello
I’m new here. I have a 12 year old son who has had migraines for 2 years. They were few and far between up until a few months ago when he started getting them weekly. I took him to a pediatric neurologist yesterday. He prescribed Depakote ER 250 mg/day. I was all set to start him on this but after reading about it, I am totally freaked out by it and too afraid to give it to him. I haven’t found much positive said about it. REally only scary side effects – weight gain, hair loss (have seen a lot on this one), lethargy, fogginess, tiredness, etc. There is no way I can put him on something that is going to make him tired and foggy when he has to get up and go to school everyday. Plus he is a high level competitive swimmer and I’m sure this would effect his swimming. The dr. said Depakote had the least side effects and to take it before bed to prevent the sedation.
Has anyone had success with this drug? I’m so scared to give it to him!

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…

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…..

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!

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?

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

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.

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.