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04/28/2011 06:43 PM

Vimpat

Psalm55
Psalm55  
Posts: 37
Member

Hi,

Today is my 4 month "anniversary" of the headache. I got diagnosed with NDPH at the beginning of the month. After trying lots of meds in Feb/Mar, I decided to take a break this month and just do magnesium and riboflavin supplements recommended by my primary care as well as following the headache diet and keeping a pain diary to hopefully pinpoint triggers.

Today I saw a new neuro and liked him a lot. We decided to try Vimpat - a seizure medication that boasts low side effects (specifically little effect on weight, concentration, attention span, or memory). I haven't seen anyone talk about this medicine on the forums so I just wanted to see if anybody had any experience with it. I'm starting it tomorrow. It starts with a 2 week starter kit which I got for free. You take 50mg morning and night the first week, and 100mg morning and night the second week. Anything you guys can tell me would be helpful! Thanks!

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04/28/2011 08:48 PM
tortoisegirl
tortoisegirlPosts: 3239
Group Leader

Welcome to the group! I've never heard of this one. Any talk about headache prevention with this one? I'm kinda wary of something that you don't hear about being used with headaches much...not that it could hurt you or anything, but why bother? Although I did see this very low number of partipant study which shows it helpful for migraine (I'd take anecdotal NDPH med info over a migraine study actually because they are so different, although different treatments work for different people): http://www.helpforheadaches.com/articles/2010/ Migraine_Headache_Lacosamide_Krusz.htm

From what I read, it seems like an add-on med for seizures, not a primary one. As far as low side effect reputation meds, what about Nortriptyline, an anti depressant, or a beta blocker? What have you tried so far?

I'd be surprised if you've run through many preventatives because many of them take months to see if they work. Side effects aren't really something to be afraid of. It helps me to read the study info as in X% got Y side effect. It usually assuages me fears as you see a lot of single digit stuff. I will say Topamax is an exclusion to the rule--everything I read anecdotally plus my own expeirence shows it can be way more harsh than any other med I've tried or read about for headache.

Have you tried antibiotics or steroids yet? These can sometimes be especially helpful in the beginning. Good luck! So glad your neuro had something for you to try. Does he specialize in headaches? Best wishes.


04/28/2011 09:33 PM
Psalm55
Psalm55  
Posts: 37
Member

I'm not sure if he was referring to that study you found, although it sounded more like he had prescribed it for several patients (migraine, not NDPH as far as I know) with good results. I was put propranolol first and didn't last two days b/c of side effects (possibly due to high dosage), and the next one was nortriptyline (10mg the first week and 20mg the second week). After the second week he (primary care1) switched me to Topamax, and had planned to titrate me up slowly, but then neuro1 ramped it up from 25 to 100mg the second week, and then primary care2 took it up to 200mg the next week...needless to say the side effects wiped me out and it will be a VERY LONG time before I ever think about trying that one again. Neuro2 let me quit Topamax all at once after being on it for a month. So now I'm on neuro3 and don't think any of the previous preventatives got a fair shake due to dosages and the timeline. There were lots of other drugs we tried for pain which did nothing, and Cymbalta I couldn't tolerate at all so I gave it up after a week.

I did have good results with steroids (Medrol Dose Pack) - no headache (or at least a lot better - hard to tell since I was detoxing from Topamax at the same time). Haven't tried any antibiotics. I can't see that they would help much - I haven't had anything even remotely infectious in over two years.

Today was kind of my "starting over" point since I haven't seen a dr or been on meds since getting the NDPH diagnosis. I was hesitant about trying anything b/c of side effects (after the Topamax and Cymbalta disasters, specifically). But when he started off by saying the side effects to Vimpat were milder, I was persuaded to try it.

I'll let you know how it goes. Smile Thanks for the link - I like research and articles.


04/29/2011 05:14 PM
tortoisegirl
tortoisegirlPosts: 3239
Group Leader

I hope starting over helps...I agree about the not really a fair trial. So how long were you headache free after steroids? What did the doctors say about that? Sometimes antibiotics can help even with no infection history...just a thought, although not much you can do until you build a good relationship with your doctor (and then maybe mention it). I definitely would recommend titrating up with meds slower and at a lesser dosage than any doctor recommends...that can never hurt. Also, if a doctor tells you to stop a med cold turkey, I would consult a pharmacist, as a lot of meds like the anti seizure and anti depressants you really shouldn't do that (unless you were only on it a short time or only at the starting dose)...second opinions never hurt. Best wishes.

04/30/2011 05:12 PM
Enbee
EnbeePosts: 1556
Senior Member

I also haven't heard of vimpat but I'll be interested to hear how it goes! I've tried some out of left field meds before, sometimes doctors just have an idea that something may work and give it a go. It's always worth a try.

It sounds like your doctors really mucked you around with dosages. Topamax is terrible to increase dosage so quickly on, then going off it quickly wouldn't have helped either Sad Definitely consider giving it another go and going up very slowly. The side-effects are more managable if you increase slowly and let your body get used to it. 25mg/week is a good dose to change by.

What side-effects did you find with Cymbalta? I've heard a few people report lots of side-effects but I've personally had no real side-effects on it other than it making me slightly hyper then drowsy.

If the short course steroids worked then there are lots of different things you can try along that line. I think I tried dexamethasone among others and they didn't help me at all but others swear by them.

Starting over sounds like a great idea. Just keep a list of what you've been on and dosages/time frames as it helps to know what you've done and when so that you can let any new doctors down the line know your med history and see what is worth repeating!


04/30/2011 07:11 PM
Psalm55
Psalm55  
Posts: 37
Member

Steroids - well I had come to the conclusion that Topamax had given me this constant underlying pain (about a level four) with headaches going up and down in intensity over that. Then about 4 days before starting the steroids I felt like my body was finally adjusting to the Topamax and the constant pain was down to a level 2, but still having the rollercoaster pain on top of that (up to level 7 or 8). Of course this was before I heard anything about NDPH so it's possible that the constant pain was just part of it, and maybe Topamax actually was helping to decrease it some..

So I started steroids and stopped Topamax the same day. The next day I still had the underlying pain (that I figured was Topamax) but no intense pain spikes. I also had lots of energy (side effect of steroid, to be sure) and went running for the first time in over a month. The second day of steroids (and no Topamax) was even better. For a couple hours that morning I had NO pain whatsoever and felt like my head was back to normal (what a strange but wonderful feeling!). That low-grade pain came back by lunchtime, but I was still hyper from steroids and giddy about the relief that I was already making plans to leave my parents' house (where I'd been incapacitated for 3 weeks) and drive 6 hours back home.

By the fifth and last day of steroids I was anxious about the headaches returning (at this point I didn't know I had NDPH - the neurologist who prescribed the steroids said that if the headache was responsive to it, then it might go away forever, which seemed to good to be true, but I felt so much better I was hopeful that he was right). I felt like my head was "waiting" on a headache..I guess a better way to put it was that I was having low-grade pain which felt ready to spike back into intense pain at the first opportunity. And sure enough, the first day I was off all meds my pain was back up to a 4 or 5 by the afternoon. And it's been moderate to severe since then.

The neurologist I saw this week made it sound like steroids weren't a long-term option - I didn't think they were either since I was wary of side effects and tolerance from prolonged use. The only two things he mentioned were Vimpat and in-patient IV treatments, which I'm not ready to try yet.

Cymbalta - the first day I took it I threw up 3x (I hadn't vomited at all in the three months I'd been sick - although I had lots of nausea). Then I had difficulty urinating - I had the urge but couldn't get my muscles to work right. It was really bizarre. I would sit in the bathroom for 30+ minutes trying to go, and even after that it didn't always happen. I was drinking tons of water (80+ oz/day) and only peeing like twice a day. I was afraid of getting a UTI or having to be catheterized, so I stopped taking it. I was taking 60mg a day, all at once. Had I read all the stuff you guys have posted about it (or about Topamax) I might have asked to do things differently!

I did make a medication chart and gave a copy to the neurologist to put in my chart, as well as a timeline (onset of headache, all the dr's appts, tests, meds and other things that stood out) and my pain diary. Took a couple hours to type it up, but I'm sure it's worth it. The neuro seemed pleased with it.


05/01/2011 01:42 AM
suki17
suki17  
Posts: 481
Member

High dose IV steroids (i.e 1000mg), followed by low dose oral steroids, administered over a number of weeks, have been used in a study to treat NDPH with some success, however I don't know anyone in this group who has benefited from it. Unfortunately steroids aren't a long term option because of their serious health side effects.

I have had success with Topamax, but I did titrate up very slowly, @ 25mg/week, and in the last weeks I broke the tablet in half so that it was only 12.5mg/week. It took me @ 6 weeks to get to 100mg. The only ongoing side effects are pins and needles in my toes and occasional memory problems i.e names & places. I also experienced terrible side effects when I tried Cymbalta i.e indigestion, insomnia, night sweats, and that was on only 30mg/day. I have never been able to tolerate SSRI's or SSNRI's.

I would be interested to hear how you go on Vimpat as I have not heard of it but it sounds like a reasonable option. Just remember to take it slowly this time to avoid any nasty side effects. Good luck.

Post edited by: suki17, at: 05/01/2011 01:45 AM


05/01/2011 02:54 PM
MaryR
MaryR  
Posts: 4120
Group Leader

I hope that the vimpat works well for you. After all the trouble you have had being put on relatively high doses of things and then dropped off of them starting something milder and doing it in a nice controlled fashion (with a starter pack no less) is probably a good way to go. If it works well for you, you may never have to revisit any of the other meds, but if you ever do want to go back to them I would be sure to let the neuro know that you tried starting them at those doses and couldn't tolerate them, but that you might be able to do it slower (I was not able to stay on cymbalta at 30 mgs a day, but I was on it for a month or so, I had lots of nausea, but no actual vomitting so I can only imagine what that was like at double my dose!).

It is true that steroids are not a long term option, but knowing that they work on you is something to keep in mind if you ever find yourself in a horrible pain spike and need something to break it. You can't do it too often, but it is good to know that if things ever get really bad there is something that can be done about it.


05/01/2011 03:48 PM
tortoisegirl
tortoisegirlPosts: 3239
Group Leader

Does anyone know if there is a relation to responding to oral steroids and a nerve block where a steroid and anesthetic is used? I thought I read something about treatment options when steroids work...but can't remember what (and no I'm not on Topamax lol).

Steroids sure didn't help me and I reacted bad to them twice, but if they do help, its a good thing to know as if you get into a tough time, like Mary said, you can ask for a pack of them. I have known people to do this up to 2-3 times a year I think.

Its weird I'm so tolerant of Cymbalta when I hear all the horror stuff (although I'm not looking forward to getting off of it). I had one day of nausea and felt a bit off. The only lasting side effects I can think of all my eyes are dilated all the time and I have mind body twitches when I sit/lie still, both awake and in my sleep (hubby told me). Can't tell if I have had the common nausea, dry mouth, or constipation, as I already have all those! I had one really good week on Cymbalta (my second week, when I increased from 30mg to 60mg), where my pain maintained at my lowest ever typical level.

If you try a med like that again, I'd try to go up (or down) in dose twice as slow and/or twice as much of a dose as commonly recommended. A lot of doctors won't tell you stuff like that, or explain any potential risks or side effects. I always do research online as to stuff like that so I know what to expect, in what cases I need to discontinue or ask my doctor/pharmacist, etc.

A few times I've found some dangerous interactions and decided to not take the drug (or, in the case of Topamax, I found out that its affect on birth control pills is very serious, and no doctors or pharmacists tell you this...my doctor even flat out said they don't interact and that none of his female patients got pregnant on it). At the same time I can also look up how much it is going to cost with my insurance, etc. They've also shorted me pills by half a couple times, gave me the wrong dose, wrong form of the med, etc. You have to be quite a vigilant patient and watch out for yourself. Unfortunately, doctors and pharmacists just don't have the time (and sometimes knowledge) to tell you everything. I think in general neuros will underplay a medications potential side effects and risks and stuff. I've very rarely ever been given titration down instructions, although have been pretty lucky on getting the titration up ones.

Now I think I may have 10-20% reduction, maybe. Its hard to tell. But, I overall feel better as far as mood, energy, anxiety, etc. I think I'll try it for awhile longer (I think its been 5 weeks). My rheumy diagnosed it after I asked if instead of Effexor I could have it, as I heard a lot of good stuff about it for a few conditions I have (like fibro, anxiety, and NDPH). Plus I remembered Effexor has a weight gain potential while Cymbalta has a weight loss potential (I've had neither). Didn't lose weight on Topamax either. For Cymbalta specifically, it comes in a capsule, but I've heard its safe to open the capsule and take some out if you want to titrate....but you do need to take it as a capsule (not just take some of the medication). Thats the problem with a lot of meds like these...they require a very slow downward titration, but they come in capsules (with few dose options)! No wonder there are such bad stories online, as you can only titrate down so much. Best wishes.


05/02/2011 03:35 PM
Enbee
EnbeePosts: 1556
Senior Member

I had a bad reaction to steroids when I tried them for my headache (I did a 5 day course of dexamethasone). I am permanently on a low dose steroid for my asthma but I don't think it has much affect on my head either way. I'm not sure about the relationship between oral steroids and nerve blocks. All my nerve blocks have just been anaesthetic based I'm pretty sure.

I've also been lucky with Cymbalta as I have very few side-effects. I already get a lot of nausea and I think it was marginally worse when I first started the cymbalta but settled down. I was on 30mg/day for several months before going up in dose. Certainly getting off it is difficult, probably not as bad as Effexor though, which was a bit of a nightmare!

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