I’d really like to ask your advice about topamax - whether it’s from your personal experience or just what you’ve heard or know.
I’ve been on topamax for just over two months, and right from the start I’ve been struggling with the side effects. Key side effects remaining now are depression and fatigue. I’m just not myself, I’m frequently down and pessimistic, and have no energy to do anything, cancelling plans with friends, not really bothering to do much at the weekends, getting up late, frustrated and irritable. This really isn’t me, it’s the opposite to what I am usually like. This has got better to some extent, and I’d probably persevere if the MAV side of things had shown some improvement, but I’ve really not seen any change yet.
I’m currently on 75mg - I should be on 100mg but on the initial titration regime I couldn’t deal with the side effects, I should go back up but I really can’t face going up at the moment.
I was on pizotifen previously for 3 months but my neurologist wanted me to come off it - he advised that it was really only worth staying on it for a short time, and I was happy to come off that!
I’m wondering whether it’s too early to see a difference with the topamax or whether I should do what I really want to and come off it? Any thoughts?
Thanks
Tess
I started 37.5 mg Topamax last November & worked up to 50 mg after a couple weeks (if I remember right). I just stopped Topa a couple weeks ago because I couldn’t handle the cognitive side effects … I have a full-time job that requires lots of writing & editing & I was making too many mistakes. I was pretty discouraged & a little hesitant to ask my neurologist about stopping it because it seemed to help during the first month … and I’m getting tired of taking a new drug only to be disappointed a few months down the road. Anyway, he completely agreed that the side-effects of Topa were too much for me so I started Amitriptyline a couple days ago.
In my humble opinion, it sounds like you’ve given it a good shot by staying on for two months. You probably need to talk to your doctor about changing meds. There might be something else you can try that won’t bring you down. Don’t let depression get a good hold on you.
It sounds like you are having the same side effects that I experienced with Topomax. The big one for me was TEMPER, not jsut irratibility. I had to get off of it before I hurt someone, lost my job or ended up in jail for assault. Most of the side effects from Topomax go away over time but this is one that I don’t know if it does or not. I also don’t think that the tiredness goes away but others that have had good luck may jump in and correct me on that. I know from experience that naps help, along with going to bed earlier, which I do in general now.
On the flip side of the coin, I was experiencing relief from my MAV symptoms within a few days. They were just minor at first and wouldn’t have been noticed except that I fall A LOT unmedicated or on bad days, and the falling decreased withing those first few days. It was actually a couple of week or so before I actually “felt” things getting better. Because you are saying that you have not experienced anything two months into it, I would talk to your doctor about tyrating down and eventually quitting so that you can look for another med.
I agree with Joy and Brian. I gave Topamax a two-month trial last Spring. I had to discontinue due to the cognitive side effects. I too found it very difficult to continue working while on it. It also made me overly emotional. Some may say to stick it out a little longer. I say go with your instincts. There are many other preventative medications you can try.
I also gave Topamax about 2 months and my side effects were not severe but enough to feel like i wasn’t my total self anymore. I lost interest in intimacy … felt a bit more irritable in general so i seemed to go off at my partner more often. Did not feel the Topamax helped me at all. I got as high as 50 mg … and had gone very slowly to get their. So i am nearly off it now … down to a half tab which is about 12 1/2 mg. Will be completely off it in a couple of days. Intimacy has returned and i don’t feel the irritable edge that i had. I feel my normal self (with the mav). I’m certainly not a doctor but 2 months in my opinion should be enough time to give someone some kind of indication if your beginning to get some slight relief from the drug. The worst side effects were when i began to wean off the drug … i followed my doctor’s orders but i guess it was too fast … so i had to slow it down. I began to feel an accelerated rocking, wavy motion and it was overwhelming. But things have returned back to normal.
Topamax took away 90% of my MAV symptoms after being on it for 4 months. I suffered with side-effects on it the entire way, then all the side-effects went away after month 4. I now have 0 side-effects. It’s like taking water. It didn’t handle 100% of my MAV, but then again I am only on 50mg. I can’t take any more of it because i can’t breathe when I take more, but at 50mg, it has saved me from 90% of MAV hell. The other 10% is some stuff that I don’t know what to do about it, but it’s dealable at the time being. It’s one of those meds that either fails miserably or works like a charm. I fell into the latter. However, if you are not willing to give it the FULL 4 months, don’t bother because it takes that long to get the full effect from Topamax. Topamax starts working after a month. Any doctor will tell you that, but it is at its strongest potency after 4 months according to Dr. Hain, and he was right. During the 4 month mark, all my miracles started to happen and I have been at the 90% mark ever since, with the ocassional trigger like we all suffer with MAV. But the diffference is, I am not in 24/7 emergency hell like I was before. Now if I get triggered, I feel a little “off” for a few days, or sometimes up to a week if I really pulled a rough one, and then I am back to my baseline. Before, when I was in MAV hell, it was 24/7 hell from morning to night. 10 solid months of that. Others have suffered much longer than I but to each of us, our own time frames are hard to deal with. My 10 month 24/7 stretch was very difficult. Topamax saved me from that.
Rich, that’s very good news. Can you describe how you feel at 90% though? I mean, is your main problem the vision/shaky problem that you described elsewhere? How do you feel cognitively?
HI All,
Thanks so much for the replies and your comments. It’s so useful to hear your experiences - just a shame that so many of you have had such negative experiences with the drug. I’ve heard from my neurologist that this is one of the cleaner drugs for migraine, it’s a newer generation drug, and of course he had said that it had virtually no side effects, so actually it’s kinda reassuring from that aspect that I wasn’t alone or weird to have all of these side effects from the topiramate.
Joy, it would be interested to hear how the amitriptyline goes once you start to get a sense of side effects and whether it’s working?
Brian, I’m wondering what you are on now and whether you’ve found something that works as well as the topiramate did. Shame the side effects were so bad considering it worked so well and so quickly.
Marci and Joe - again I’m wondering what you are now on or thinking about taking. Joe that was a really useful warning about weaning down too quickly. I did see a very quick weaning schedule that I’ll now not consider!
It’s really great to hear your positive experience too Rich, and I’m really pleased that you are at 90% with the help of the drug. 90% is fantastic - has it given you pretty much your life back? You give me hope although you all give me a warning that if I haven’t seen any improvement so far then maybe I’m unlikely to see any improvement. I do believe the side effects are more manageable however with that in mind that I haven’t seen any improvement yet I think it would be good to discuss with my dr. Getting to see my Neurologist might take a month anyway but that’s the plan. I’ll keep you posted.
Joy, it would be interested to hear how the amitriptyline goes once you start to get a sense of side effects and whether it’s working?
So far only side effects are tired (though not foggy) & dry mouth. I can put up with both if I start to see improvement in other areas. Not affecting my dizziness (I’m still walking on the water bed) or headaches yet. I’ll give it a month & see what happens.
Like you pointed out, some people do very well with Topamax, so hopefully you’ll be one of them if you decide to try it. Kinda surprising your neurologist said there were “virtually no side effects”. That’s just not accurate. Maybe he said that so you wouldn’t ‘imagine’ anything into existence … I dunno. My neurologist will tell me about side effects if I ask him but he’s also very quick to point out that for every one person who’s had bad effects, there might be ten who tried this or that drug & it worked well for them.
Rich, that’s very good news. Can you describe how you feel at 90% though? I mean, is your main problem the vision/shaky problem that you described elsewhere? How do you feel cognitively?
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Cognitively I am 100% at all times. No brain fog, no confusion, no “head symptoms” at all. Well, once in a while I get headaches but so does everyone else. But the head feelings are all gone, and I had TONS of head symptoms like brain zaps, head vibrating, brain fog, all things I really don’t even want to remember it was that horribel.
my only deficits are the slight vision distortion, light sensitivity that comes and goes, and I can’t do any quick head movements more than a couple times or I get transient dizziness until I stop so sports are out. But I can’t complain. I’m back to doing most of the things I did before. I don’t fly because I dont know what the pressure would do to my head. I’m still afraid of that. Topamax saved me, but it took 4 months to happen. Just keep that in mind. It didn’t happen overnight or within 2 months
Do you ever wonder if maybe your improvement is due more to all the lifestyle changes you have made than the Topamax? I’m curious because you and I have made some similar dietary and other lifestyle changes and are both hovering around 90%. I am not currently on any meds, just supplements. It makes me wonder if you would be doing just as well without the Topamax. Don’t get me wrong. This is truly a curiosity thing and not intended to deter anyone from trying Topamax. As a matter of fact, if I were you I would probably continue to take it even if I thought there was a possibility that lifestyle was the reason for the improvement simply to avoid rocking the boat and since you aren’t suffering from side effects. Anyway, I’m just wondering if you’ve ever thought about it.
Do you ever wonder if maybe your improvement is due more to all the lifestyle changes you have made than the Topamax? I’m curious because you and I have made some similar dietary and other lifestyle changes and are both hovering around 90%. I am not currently on any meds, just supplements. It makes me wonder if you would be doing just as well without the Topamax. Don’t get me wrong. This is truly a curiosity thing and not intended to deter anyone from trying Topamax. As a matter of fact, if I were you I would probably continue to take it even if I thought there was a possibility that lifestyle was the reason for the improvement simply to avoid rocking the boat and since you aren’t suffering from side effects. Anyway, I’m just wondering if you’ve ever thought about it.
I’m very happy to hear you are still doing well!
Marci
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Marcie,
I know you have told me before but would you mine telling me agian what you are taking. and the lifestyle changes you made…
I am not on any meds except a very low dose of valium as needed. But I had a bad couple of days this week and I am trying to figure out why and what else I might do or what I have done different to bring this on.
Following a low-carb diet without sugar, grains, or fruit has had the biggest impact on my improvement. I also limit caffeine and avoid aspartame, msg, and nitrates. For supplements I take a multivitamin, fish oil, vitamin D, CoQ10, magnesium with calcium, and St. John’s Wort. I also take a few supplements to help me sleep. I’m pretty sure the St. John’s Wort and a chinese herbal formula I use for sleep made a noticable impact on my MAV and my sleep. The rest I take just in case. Other than that, I try to go to bed and get up at the same time every day. I avoid fluorescent lights as much as possible (this is difficult), and I wear sunglasses at work whenever my symptoms are flaring up.
I think the question re: supplements/vitamins vs. medications is an interesting one, but the answer like everything lies in two areas: 1. how bad your MAV symptoms are to begin with and 2. that every person is different and reacts differently to supplements/medications. Unfortunately, as we all know, one med may work for someone and not for someone else. Body/brain chemistry plays a significant role in all this. I don’t, however, think there is anything wrong with using either or both. Maybe finding the best safe combo can work?
RIch - thanks for the clarification. From reading your other posts and about your treatment as it happened, it sounds like the Topomax was hell in terms of side effects for 4 months but then finally started working for you. That’s great. (I can’t remember all of your MAV symptoms though, but never the less.) And I think you said you tapered up slowly and stayed at 50 mg and that amount worked for you, yes?
I think the question re: supplements/vitamins vs. medications is an interesting one, but the answer like everything lies in two areas: 1. how bad your MAV symptoms are to begin with and 2. that every person is different and reacts differently to supplements/medications. Unfortunately, as we all know, one med may work for someone and not for someone else. Body/brain chemistry plays a significant role in all this. I don’t, however, think there is anything wrong with using either or both. Maybe finding the best safe combo can work?
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I agree with you 100%, Bonnie. It is obvious from reading all the different experiences on this and other forums that we all react differently to meds and supplements. Here are a few simple examples. I believe St. John’s Wort may be helping me, but Scott had a heck of a time with it. Topamax made me miserable, but it seems to be helping Rich. I would be ecstatic to find a med that took away all my symptoms without annoying side effects. Unfortunately, I haven’t been able to find one so far. On the positive side, I have gone from someone who was VERY sick a year ago to someone who is functioning around 85-95% most of the time (I still have worse bouts sometimes). I believe the improvement is due to the changes I have made in my diet, compensation by my brain, and evolution of the disease. Now my dilemma is whether to risk nasty side effects to try to get to a 100%. This is one crazy rollercoaster ride we are all on!