Starting Tompiramate tonight :-(

[jasperc163]

for chronic headache/migraines. Absolutely **ing myself due to everything i have read. I have a job where i have to talk alot so just hoping i don't get the cognitive side effects.
Still on 20mg of Nortriptyline and just beginning to taper off short term dose of prednisone so feeling like a pill bottle.

Have resisted trying topiramate for months but out of ideas now...

Anyone any good stories?! Starting on 25mg at night for a week.
thanks

[littlemisswise]

I take 100mg at night and 50 mg in the morning for migraine. I haven't had any cognitive side effects, tbh. The only side effect I had was I lost weight and when they put the dose up to 200mg a day I got an upset stomach, hence why I now take 150mg.

[jasperc163]

thanks littlemiss - thats good to hear. Need to lose weight as have put on rather alot with nortriptyline/steroids and lack of exercise since I've been ill!

[LittleNoona]

Well I'm jealous!

Had topiramate for migraines and it was amazing! Hardly any side effects at all. Migraines disappeared.

Gp took me off of them as she shouldn't have prescribed them in the first place apparently.

Gutted

[EveryGoodBoyDeservesFun]

I've been on topiramate for just over 6 months. I started on 25mg and increased to 50mg at night after a couple of weeks. It has taken until now for things to really settle down with it - both regarding my migraines and with the side effects.

I was getting cyclical migraines every month that lasted 6 or 7 days - I now get a severe headache that lasts one day, so I'm delighted. With regards the side effects, I did notice quite a few - pins & needles in my finger tips and soles of my feet, fuzziness in my head and feeling a bit spaced, diarrhoea first thing in the morning, and weight loss (though that didn't really start until a couple of months in).

Most of the side effects have all eased considerably. I'm still losing weight, but I'm very stressed at the moment so not sure if it is just because of that. Most people seem to think the lower dose of topiramate doesn't cause weight loss or too many side effects, so maybe most of mine are due to the stress! But I definitely felt quite 'foggy' for a while - I have quite a demanding job though and managed to bluff my way through ok. I found it wasn't any worse than having a migraine and taking other migraine medication.

Good luck, I really hope they work for you.

[lookbutdonttouch]

I have been on it for years. As in about ten. I built up very slowly to 150mg at night as I need to function properly at work.

I went very slowly to manage the side effects and to ensure I was on the right dose for me. Eventually settled on what I'm on now.

I lost 16lbs in total. The best side effect ever!

Just go very slowly and you will be fine.

I now want to come off them, as I have been on them for so long, slightly scared of putting the weight on, never mind the pain....

[jasperc163]

Not slept at all so far:-( !

[EveryGoodBoyDeservesFun]

I found it did help with my sleep, so hopefully last night was just because you were anxious about it! I would be very prone to insomnia but I certainly seem to be getting a few more hours since I started on the topiramate.

I was going to come off it after about 3 months due to the side effects I mentioned before but I'm really glad I persevered.

If you are really worried about it affecting your work could you warn your employers? I told my colleagues that I was trying new medication that was nick-named 'dopermax' just so they didn't panic if I started making silly mistakes or doing things that were totally out of character.

[jasperc163]

Thanks everygoodboy. I had the same prob with 10mg nortriptyline and yet 20mg which I am now on has a sedative effect so I am prone to this.Didnt sleep much for first 4 nights on the nort. Have taken the topiramate at 5.45 as experiment and will take nortriptyline later as normal . I have a really heavy week next week and can't cope with headache on no sleep.

My problem with work is don't work in office but go out advising companies who don't know me so can't go around making excuses for my inability to sound competent! Getting paranoid every time I can't think of a word now!!

Been working from home for month now as constant unrelenting headache for over 5months but they won't tolerate it much longer.

[jasperc163]

Been on it 13 days now (3 days at 50mg) and no obvious side effects at all but no effect on headaches either :-( Should I be worried as it seems to work for most of you immediately ? In process of coming off short course of prednisone so feeling pretty crap anyway, plus still on 20mg nortriptyline which does something but not enough. Getting worried its not going to work! And I could do with something curbing my rampant steroid induced appetite..

[EveryGoodBoyDeservesFun]

From what I can remember it took a while for it to have any effect with me - both with the side effects and ease of symptoms. In fact, I remember having a chronic migraine for 10 days a while after starting them that was almost unbearable as I wasn't allowed to take any other pain killer than ibuprofen and anadin extra. I was desperate to take my usual Zomig as I knew it would give me some relief but the doctor and pharmacist were both adamant it could interact with the topiramate, so I just had to see it through. It honestly took me 3 or 4 months before I felt they were having any significant effect, and was contemplating coming off them just before that.

I would bear with them. They will take while to get into your system, plus the other drugs will take a while to get out! My appetite is definitely reduced, so worth hanging on for that bonus!! But I really feel for you - it is horrible when you feel so crap.

[jasperc163]

Thanks everygoodboy, just getting so desperate, no let up now for 6 months:-( I have read quite a lot of posts on other sites saying topiramate helps with migraines but not the constant more moderate pressure type headaches that some people (like me) also get - I wake up with it and go to bed with it so it is just draining the life out of me.

Interesting that you weren't allowed to take anything else? Is that still the case? neuro hasn't told me not to take triptans and has actually allowed me to have a new one , frovatriptan as it is longer lasting than my normal maxalt. Not tried it yet though as steroids kept full blown ones at bay but planning to stop that totally tomorrow.

Some occasional pins and needles since last night in feet but can't stop eating (nortriptyline may be overriding topiramate on that!).

[EveryGoodBoyDeservesFun]

I have been told that I mustn't take the Zomig as both it and the topiramate work on the brain. This was the advice of 2 GPs and a pharmacist though, not a neuro, and I think they were just being cautious.

Have you ever tried beta-blockers? I used to get the continual pressure type headache that you are talking about - I would have woken up with them and they would have got gradually worse throughout the day until I crawled into bed at night. I was put on Inderal 80mg and that really helped. It didn't help with the cyclical migraines though, but did stop the long term ones.

I still get pins and needles in the soles of my feet and sometimes the tips of my fingers - annoying but I've got used to it!

[jasperc163]

Hi everygoodboy, and thanks so much for your support. Seeing neuro again in 2 weeks so will ask him specifically re triptans. Does this mean you can't take any abortives now? As far as I am aware I could have taken frovatriptan or maxalt while on the current cocktail of topiramate, nortriptyline, and prednisone, as all doing different things. Scarey really.

Really interesting re the inderal......
Are you still on Inderal to deal with the pressure headaches or have they ceased to be an issue? It was discussed at one point but not pursued as I have a prescription for it from way back. I take 40mg about 3 or 4 times a year when I have to do a presentation for work as i panic about it and go beetroot! It slows me down pretty badly after and some other side effects and I told neuro I couldn't imagine being on it continually or taking a higher dose so it was not tried. I did take a 40 mg tablet once a few months back when I had a particularly bad head and it didn't help but then maybe I was heading into migraine territory, so maybe i should look into it again as its the constant nature of this that i just cant cope with. Like you it seems like maybe there are 2 things going on ....As a matter of interest do you also get any problems round by the base of your skull at the back?

Before my headache turned chronic and 24/7 , I went into cyclical migraine mode I think where I had (often hormonal) headaches that lasted 3 days, then 5 days, then 11 days.......

First day off steroids completely today, glad to be rid of them but can already feel headache starting to ramp up slowly :-(

[jasperc163]

Sorry me again everygoodboy. Can I just check you are taking 50 mg at night rather than 25 am and pm, which I think is the norm when moving up from 25 at night? just wondering as been feeling pretty crap all week since I went up, I had assumed it was the steroid reduction but side effect timings now making me rethink. wondering if I would be better trying 50 at night instead...

[EveryGoodBoyDeservesFun]

Hi jasper, sorry I didn't get back on over the weekend. No, I can't take any abortives at all. All I'm allowed are strong painkillers that really aren't doing the job. I had a really bad headache yesterday that I know a zomig would have blitzed, yet a high dose ibuprofen and co-dydromol both prescribed by the GP did nothing. It is quite frustrating!

I take 80mg sustained release inderal, so I don't know if that helps with the slowness. I was actually initially put on them for high blood pressure, but they also stopped the continual pressure migraines as a side effect, which was great. I have been on them so long I can't actually remember whether they affected me with slowness initially though, but if it did it certainly wore off. I have never really had problems at the base of my skull - other than just general tension. Not enough for it to have been an issue though.

I take the full 50mg topiramate dose at night, and I do think it makes you feel very thick-headed, so I imagine taking it in the morning wouldn't be good. I used to suffer from insomnia, but the other advantage of the topir is that I am sleeping slightly better! I do think they recommend taking it at night.

When I started on the topir I did feel really crap for quite a while, but I kept going as I felt it was a last resort and had to be better than the migraines. I'm glad I did as although I still get a couple of really bad headaches they are not like the 7 day migraines I was getting every 3 weeks.

[jasperc163]

Hi Everygoodboy, and thanks. Maybe i should look at inderal again. I have actually skipped my dose of topiramate this morning as I am getting more convinced that it is actually giving me a worse headache (or rather a different one if that makes sense?). I ended up taking a triptan yesterday and it did nothing at all which indicates it isnt a migraine. I am going to take it again early this eve so that I can see if the odd pain returns before i go to bed. I assume this didn't happen to you? It's so hard to understand triggers when something is constant.

[jasperc163]

Thinking about it though, it sounds like your constant pressure headaches could have been directly due to high blood pressure, hence the fact that the Inderal worked?

[EveryGoodBoyDeservesFun]

Yes, they may have been caused by HBP. Or possibly anxiety - I'm trying to remember when I started on the inderal but it may have been around the time my marriage was breaking down, so it could all be inter-linked. Though I had already been suffering with the long term migraines for a long time before then.

I would keep taking the topiramate 50mg at night and see how it goes - you will feel rough for a while but it does ease. I've been under a lot of stress recently so I'm sometimes not sure what is stress and what is drug side effect tbh, but I definitely feel much better than I did!

[jasperc163]

EGB, can to tell me if you saw a gradual improvement over the initial 3 months or pretty much nothing until a sudden decrease in migraine? thx. Took 50 mg last night instead of am/pm split and felt not so bad this morning but bad again this afternoon. If it is doing anything, I think it has quite a short half life?

[EveryGoodBoyDeservesFun]

Because mine are mainly cyclical, I didn't really notice a big difference until a couple of weeks in when my period was due. But I didn't have the usual migraine, just a really bad headache which only lasted a couple of days. At my 2nd period I did have a dreadful headache that lasted 10 days, but it wasn't a full-blown migraine like before.

But I'm not sure about the half life theory, sorry!