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Topamax "Just blah"... how to fight it?

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Post  Batman55 Tue Jun 14, 2011 12:17 am

I've been on 75mg for a week. It really sank in today just how much apathy, just how "indifferent" I am to everything going on... as if I don't have even have 50% of the interest I would normally have in, well, anything. This drug just "cuts off" the excitement level that I would normally depend on to get myself perked up and doing things. Hopefully I don't come off as a bratty child (and I've been told that I do, well over a hundred times on the Internet) but I don't care for the way things are coming along. I have anhedonic tendencies to begin with and here we go with more of this "nothing really matters, it's all the same." I'd almost call it depression, but that might just be an exaggeration, I dunno.

I'll ask the neurologist Friday about this effect. But I don't perceive the "mood flattening" to be a short-lived effect, and here's why: Topamax is an anticonvulsant, and we all know anticonvulsants are frequently prescribed for bipolar disorder. I find that if someone says something snide to me--where I once used to react with an argument, now I just stand there and don't say anything. That's a good thing, I've actually become less reactive for once. But at the same time, while my hobbies and interests still exist, the drive to pursue them is gone. To have no passion--for me--is a deal-breaker, because that's what usually drives my activity.

As an aside, is there supposed to be something "unique" about the 100mg dose? I'm asking because every headache patient prescribed this drug is told to work up to 100mg, as if lower doses aren't going to work, 100mg will show some benefit?

Batman55

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Post  living Wed Jun 15, 2011 7:35 am

Hi Batman,

I can understand what you're saying. Only you can make the decision about how much of the side effects you will tolerate and for how long. The apathy is a very strong side effect of Topamax. I felt it very strongly and I don't think anyone gets away without feeling it. Each time I took the new dose I sat down for a week and didn't get up. I called it being a zombie. However, looking too deeply into it and wondering about a future of living with this level of apathy is something I would recommend you don't try to do. While the dose is changing you are going to feel apathetic. Once you're stable at a dose for a long while, the apathy will lift. And, until you hit a dose and stay there for 3 months I don't think you're truly going to know if it is working or not. What you could focus on is the fact that if you decide to stay on it, and you reach a point where you can say it's not working (once the side effects have subsided) you can just titrate off it again. So it's not something you have to be on forever.

Having said all that, lots of people simply feel they can not tolerate the journey up to that point. Having the head pressure, and then other issues on top of it, and then throwing Topamax into the mix may all just be too much for you to deal with at the moment. But then again, it may not be too much and you may just need some support while you go through this process.

All I can say with certainty is that you are not alone in feeling scared as hell about the side effects of Topamax. It is a fundamentally powerful drug which changes the reactivity of our neurons. I was terrified of it and hated it. Now I love it and am grateful for it. Like I said, it is a journey. Mine just happened to have a positive ending and that's because it happened to work for me and I had a lot of support. For me it worked at 50mg. I'm thinking of upping the dose to 75mg so I can start including actually going out of the house as part of my life though, lol. Because now I have being at home without having migraines under control, it might be time to start trying to go outside without migraines. I think I'll need a stronger dose for that because of all the lights and sounds and triggers. We'll see.

I hope you can find your way to getting the support you need to make the decisions you're facing. Best wishes!

living

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Post  lentils Wed Jun 15, 2011 1:49 pm

Hi Batman,
Only you can decide if the side effects are worth the trouble. They may lessen as time goes on. I started with 25mgs and worked up to 50mgs. and I have been told by two psychiatrists I need to ramp up to 100 mgs if I want to get control of my mood swings. As far as migraines are concerned, I determine what dose eliminates them, by keeping a log book of migraines and doses. 50mgs worked pretty well for a year, but now I'm taking their advice and going up to 100.

lentils

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Post  Batman55 Wed Jun 15, 2011 10:40 pm

Thanks for your advice, both of you. living you've been a great help ever since i've been here. The apathy really does suck. And that's interesting about the "3 month mark" for noticing benefits where headaches are concerned. With all the side effects I've been putting up with, that's a lot of patience required of me, relatively speaking--as you could guess, patience is not a strong point for me, not at all. My neurologist told me 4-6 weeks and I would notice some relief. According to most of you, it's at least 2 months, more likely 3. I don't know why my doc told me I'd notice results in half that time, but I took her word for it, and now I feel a bit disappointed. I guess I'll have to wait longer.

Batman55

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Post  living Thu Jun 16, 2011 6:10 pm

Hey Batman,

I'll be honest with you though, I did notice some effect of it earlier than 3 months. I just didn't get the full effect until much later. That's partly because I screwed up my dosing for about a month by being an idiot and went through a withdrawal (I pulled all my pills out of their foil and put them in a daily pill box where they degraded - DOH!) and then had to go back through the titration process again. So I had noticed an improvement in the first month, then I got horrible migranes in the second month (where I screwed it up), some improvement in the 3rd month, more improvement 4th month and so on.

Also, I should mention because I think this is very important, if I wasn't taking abortive medications I would still be getting migraines. Fewer and less severe, but still getting them. So the topamax isn't doing it all alone. Certainly it is doing a lot on it's own in terms of reducing severity and frequency but not everything.

So do you have anything to take that knocks down the head pressure at all ever? Maybe if you can knock it down once, the topamax could help in keeping it down? Do the triptans do anything? Are you taking it at EXACTLY the same time every day? Are you taking it at night so you can sleep off the apathy?

Cheers, flower

living

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Post  Batman55 Thu Jun 16, 2011 11:10 pm

I'm taking 50mg of Topamax before bed, and 25mg shortly after waking up. I found when I took 75mg all at once--even with food--I got a lot of stomach pain/acid and that would wake me up and make it hard for me to sleep, so I prefer dual doses.

I haven't yet tried any triptans. I'm supposed to be using Relpax once a week, but it freaks me out, because I take an SSRI. I'm also supposed to use Compazine once a week--the nausea drug that can also be used for migraines--but I haven't tried that either, again because I take an SSRI. Not to mention--abortives are short-term relief, and AFAIK, they don't help increase the effectiveness of preventive-drugs like Topamax, nor do they help long-term. Correct me if I'm wrong, but I figure if abortives just work like a stronger version of an OTC drug (relief for a few hours, nothing more), why bother with more side effects. That's just the way I look at it, right now, and I could be wrong on this.

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Post  Angela Thu Jun 16, 2011 11:27 pm


I was on 80mg of Topamax and really felt unwell.
I persevered the dose for almost six weeks but could not
live with the side effects. "spáced out zombie" tired and
listless. I felt much better when I stopped taking them.

--
Angela

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Post  living Fri Jun 17, 2011 12:03 am

Hey batman,

No! farao Abortives are completely different than OTC drugs. They're designed to operate on the blood vessel serotonin receptors and by blocking the receptors of inflammatory peptides in the central nervous system. Triptans don't increase the effectiveness of Topamax, but topamax may increase the effectiveness of the triptans! It does in me anyway.

About them being different to OTC drugs - These triptans are very targeted and specifically and only work for migraine AFAIK. I would whack one down you and see if it makes a difference. If it's going to work, it will work within an hour or two. I find it makes my head worse before it makes it better - just briefly. Also, there is a large family of triptans - and lots of people find that one or two of them work, while the rest do not. So don't lose heart if you find relpax doesn't work. Try a different one. I've never heard of the nausea one.

Finally, i did some research and the incidence rate of getting serotonin syndrome from taking a triptan with an SSRI is low. Less than .03% annually of the millions of people taking these combinations get SS and less than .002% are life threatening. To put that in perspective, the annual incidence of car accident in the US is 1.68%. The annual rate of breast cancer in US women is .133% so if you were a woman, you would be 4.5 times more likely to get breast cancer than get SS from taking triptans and an SSRI as prescribed.

That's not to say anyone should go around eating serotonin, but certainly if you've been prescribed triptans I wouldn't hold out to see if they work or not. They are certainly lightyears beyond anything you can get OTC because they are not painkillers - they're migraine killers.

Just some food for thought =) Good luck!

What a Face

living

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Post  Batman55 Fri Jun 17, 2011 10:18 pm

Good point. I think I'll give the Relpax a shot, one of these days.

Batman55

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Post  living Fri Jun 17, 2011 10:51 pm

Good man! pirat

Oh by the way, I should clarify. Abortives for classic/common migraine which you clearly don't have, CAN knock out a migraine completely. They're not necessarily short term relief at all. They are designed to halt the neurological processes which are causal to the pain. I'm just hoping it will also do something for your head pressure if your doc thought it would and gave you a triptan.

For me before topamax, 2 or 3 x imitrex (triptan) would give me about 4-8 hours relief when I would then need to take a bunch more or just give up and cope with the pain which for me lasts 3 days with any full blown migraine.

Now that I'm stable on topamax, 1x imitrex will knock out a migraine completely. I don't need to take a handful anymore - thank god because they're damn expensive. Like $8 a tablet. Pop 1 and no more migraine. That's why I could post that I haven't had a migraine in a month. I've popped imitrex but it's worked every time, so I count that as no migraine. I think all this is because the migraines aren't as frequent and the onset isn't as rapid or severe either. That's signalled a huge change in the relationship for me then between topamax and the abortive.

living

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