Yesterday, I went from 50 mg of tompmax to 100 mg. I was having one of my better feeling days yesterday until I made a horrible mistake and drank part of a drink that had caffine in it and immed got dizzy. The rest of the night I was dizzy with a horrible headache. Today, has been horrible as well. I don’t know if I’m still being punished for the partial cafinated drink or if I was to active for the first part of the day yesterday as I was feeling so well and I’m paying the price today.
I’m also wondering if anyone on topamax had increased dizziness when they increased their dosage and maybe this is comming from that and will get better. Any ideas?
I absolutely had increased dizziness with dose increases and I only bumped up by 25 mg increments. Can I ask why you went up in a 50 mg increment? The usual recommendation is to go up 25 mg per week, to help lower the chances of side effects. I bet your dizziness is from the med and not the drink.
I was on 100 mg for six months and even then had increased dizziness when I went up to 125 and then 150 mg and I was so worried that I had messed everything up. But it all settled down in a couple weeks and I have the best control of my symptoms that I have ever experienced.
As with most meds, and what you hear a lot around here, take it slow and low (as in the dose) and that will help lower the potential for side effects and allow the med to be more tolerable in start up.
Do you have a benzo to help with this increased dizziness while you ramp up on Topamax? Is 100 mg your target dose? When did you start?
I started April 12 at 25 mg. Took 1/2 pill in morning and 1/2 pill in the evening for two weeks. Then she switched me to 50 mg for two weeks and now 100 mg for the remainder of time until I see her again in August. She didn’t prescribe any other medication for me. I’ve honestley never been on a lot of medication before this struck me and I’m new at this. All these different medications mentioned on this site are like a foreign language to me sometimes. I’ve heard a lot of people mention a benzo. Is that an anxiety medication?
Benzodiazepines (“benzos”) are a class of medications, mostly used as antianxiety meds. Some of us use them, some of us, like me, never have.
And I too am surprised that you jumped from 50 to 100. That’s pretty rough on your brain. I went up by 25 mg increments (and waited TWO weeks between dose increases); some people go up by even smaller increments than that. I have a doctor friend who advised waiting 2 weeks so I took his advice, even though my prescribing neurologist said to do the increases every week.
I was fortunate in that I didn’t get any increased dizziness each time I did a dosage increase.
It’s hard to tell if it’s the caffeine or the dose increase or both, but I think it’s a good idea going forward to avoid doing both on the same day again! Have you been having any caffeine during your trial of Topamax? If you have, then you might resume using it a few days AFTER you’ve adjusted to each dose increase.
You don’t HAVE to go up to 100 right away if you don’t want to. You can do 75 mg first.
I am currently on my way up to 100mg of Topamax. I just upped from 50 mg to 75 today actually. My neurologist wanted me to bump 25mg every 4 days, but bumping up has made me so dizzy that i’ve been waiting until it calms down before I bump, which I’ve found is just about 6 days.
The first few days at 25, and then again at 50, have been the worst days I’ve had (in terms of dizziness) since before I started any treatment at all. I mean it hit me HARD. Hard enough that I thought about giving it up immeediately. But I stuck it out because every day it got a little better and like I said, by about day 6 things had returned to normal. I can’t imagine how hard bumping 50mg would hit me.
Yesterday I had my first super-positive sign–I sat in a restaurant with a bright light right in my field of view about 5-7 feet away and I didn’t have to put my sunglasses on. I was a little uncomfortable, and it definitely was bothering me, but just a month ago I’ believe that would have had me swimming around in zero gravity in about 5 minutes. I’m still on 100mg of Nori, and I’m hopeful that this 100mg Nori-Topamax combo may be working for me. My small success yesterday actually made me eager to bump up the Topamax today even though I know i’ll pay for it for a few days.
I think i read that Topamax has some weird interactions with carbonation as well, but I haven’t been drinking sodas lately. I thought it was just that it made them taste weird.
I cut one of my pills in half last night. I just couldn’t do it. I was so dizzy and have had so much of that “motion head intolerance” the past couple of days, horrible headache and fatique. I was bedridden for much of yesterday. I’ve been a little better today but still have times I feel like a medicated zombie. I Feel like an absentee parent sometimes and I hate it. I used to be so active with my children. I’m here to take care of the basic needs of my kids but after that i’m toast and they are on their own for entertainment. I thank god for my husband who has been very supportive and understanding of this. He is getting the brunt of their care for the moment. Hopefully,when all is said and done, the tompamx will kick in and they will have their mommy back.
When I first started topamax, I was not watching my diet so was not restricting caffine at all. Now I am attempting the migraine diet so have cut out all caffine (except when I accid drank the caffine drink the other day)- Finding the migraine diet very hard to follow. I really miss cheese and chocolate but I really want to feel better more.
My dr. did tell me when I started topamx carbonated drinks would start to taste strange. Are there side effects to nori? If so are they as strong as topamax? Sorry if this is kind of jumbled. I’ve read it at least three times and cannot tell if it makes sense. I’m still a little out of it.
I have found topamax horrible each time I have to increase the dose, it makes me feel like hell for about 5 days, rough for about 5 days then I start feeling better again.
There’s no way I could have jumped by 50 and still been active, but it does get better when it settles
I am on both Nortriptyline and Topamax. There are side effects to both, though I believe less people are sensitive to the side effects of Nortiriptyline than Topamax. It sounds like the Topamax is hitting you way harder than it hits me. It makes me really dizzy, but not to the point of non-function. It just makes me feel super-cruddy for 2 or 3 days every time I boost the dosage.
Here are the side effects I notice from Nortriptyline. Note that everyone is different:
Dry-mouth (gets really bad above 100 mg for me–like I have to keep water around all the time)
Bad constipation. Gotta make sure I’m taking lots of stuff (magnesium, fiber,etc.) to counteract or I get into trouble. The topamax is actually helping because it works the other way.
Makes me a little hyper, almost like I lose the filter on my mouth. I’ve become a serial blabber on the medication. Now, to be fair, this is what i was like back when I was a teenager, so it is possible that I’ve just been chronically depressed for the last 17 years and the Nori has fixed me. But I would like a little bit of my self-censoring back. The doc told me this is an odd reaction–most people find it makes them tired. I don’t notice it tiring me out until I get to very large doses (150 mg)
Delayed urination. Seems like sometimes I try to pee and only some of it comes out, then I have to pee again 5 minutes later. Not a big deal as long as you expect it. Again, this gets far worse for me above 100mg.
Some sexual issues, mosting involving completion. This is not a problem for me at doses of 100mg or less as long as my wife and I are aware of it and don’t dilly-dally too much! But at 150mg it is a big issue.
Sorry to hear you are having so many problems on Topamax. Hopefully if you try Nortriptyline it will work for you.
I have only been on both for about maybe 15 or 16 days now. I’m aiming at 100mg of both, but right now I’m at 100mg of Nortriptyline and 75 of Topamax.
Success? Limited so far, but some encouraging signs. The nortriptyline gave me some minor success around 60-70mg but never seemed to improve beyond that (I went all the way up 150 on it). The topamax seems to be helping a bit even at 50, but it is hard to tell because every time I up the dosage it makes things really bad for a while so can’t really comment until I let things settle down. I’ve been told that i need to get to 100mg and let it stabalize for several weeks before I can know if it is helping. If I get better on the Topamax, My doc will probably pull me off the Nort and see if that was actually doing anything. Since I discovered my triggers right around the time the Nort started “working” it is hard to know whether it actually was working or whether I just stopped constantly triggering migraines.
Just as a followup, today I was able to work all day on a computer without sunglasses on for the first time in almost a year without getting horribly dizzy. So I believe the Topamax is definitly working. One day does not mean I’m cured, but I’m not even at my target dosage of Topamax yet so I am VERY encouraged.
That’s great Jamie. I’m so glad to hear your doing so well on topamax now. I’ve been doing better. I’m still taking 75 mg and planning on upping it to 100 at the end at the of the week. I’m still experiencing more dizziness then I expected to at this point but i’ve had a messed up routine this week. Just came back from a trip from Seatle where I was traveling though mountain passes and then had several balance test done including a eng/vng and the rotational chair. Not sure what is triggering the extra dizziness but I’m ready for it to end. One thing I’ve noticed improvement is my foggy brain is better so I’m hopeful. (maybe the topamax is starting to kick in.)
The last few days I’ve seen a dramatic improvement. I feel almost normal again for the first time since I first got sick last June. I’m still on 75mg of Topamax but things have gotten good enough that I’m wondering if I should even go up to 100mg. I probably will just to see if things will get even better, but I’d say I’m at about 85-90% of normal right now, and I’d probably be higher if I hadn’t gotten only 4 hours of sleep on Saturday, which threw me off a bit.
At this point I’m not sure the Nori is really doing much. The change on the Topamax has been so dramatic in comparison. I think the Nori may been helping me a small amount, but the Topamax is helping me exponentially more. I will probalby try to get off of the Nori if the Topamax continues to help like this.
My only concern with increasing the Topamax is that I don’t want to push it into the realm where I start getting the mind-fog/confusion thing. But maybe I will tolerate another 25mg just fine.
I haven’t altered my diet at all. I have my triggers nailed down pretty well, and food is rather irrelevant to them. I am triggered by bright artificial light and by anger. Anger probably brings on the worst migraines for me, but it is the easiest to avoid. Lack of sleep is not a trigger per say but is a magnifier–it makes every trigger exponentially worse. So if I get no sleep, anything that would trigger a migraine does so far quicker and easier than it would otherwise.
The only diet “modification” I made isn’t a modification at all. My mother had migraines, and she seemed to feel that artificial sweetners like Nutrasweet triggered her migraines. So I’ve steered clear of them. But that wasn’t really anything new for me so it wasn’t a modification.
I avoided chocolate for a while, but I have found that food pretty much doesn’t change a thing for me good or bad, so I stopped worrying about it.
I was wondering if you can use your computer without your sunglasses now or if bright artificial lights are still bothering you? Sorry for so many questions, I just want to get better. I’m hoping for success soon. I went to 100 mg today. I think I do way better when I stay away from the computer. Computer is a huge trigger for me. I use a computer all day at work and to make it worse my performance is based on how fast I am on it. I’ve been on medical leave since dec because I can’t not tolerate it at all. At home, I get on for 10 minutes at a time and then get off again. Its still enough to mess me up. I can’t do that at work. Thinking about giving up my job.
I got computer glasses as my vision is messed up because of all the vestibular problems. Now I have the potential mav diag. I am not sure if the computer glasses are the same as the migraine glasses everyone is always talking about.
Yes, for the past week I have been using my computer without my sunglasses and without getting sick for the first time in a year. I still keep the brightness on my monitors down relatively low–lower than a normal person would probably put it, but not at a level that would make someone think something is wrong with the monitor or anything. I’m not perfect yet, but I’m doing really well. I spend pretty much all day (12+ hours) on the computer working and I have pretty much zero dizziness. I still get a little bit light headed from time to time so I take a few breaks to let my head calm down, but that is about it.
I’m waiting to go up to 100mg of the Topamax next week once I complete a big project this week. I know it will make me super dizzy to adjust the new dosage.
BTW, the sunglasses I used were actually the MigraLens glasses made over in England. I don’t know if they worked any better than sunglasses or the other migraine glasses out there, but they allowed me to work on my computer with only about 10-15% of the symptoms even before I started taking the Topamax. If you have to use a computer while you are trying different medications, and you feel that light sensitivity is one of your triggers, I recommend to at least trying a pair of sunglasses or one of the tinted pair of glasses that are out there to see if they help you the way they did me. They allowed me to go back to work in December even though I hasn’t really started to get better yet. I had been out since July. The only downside is that sometimes small text is hard to read, especially if the color is such that the tinting makes it blend in.
Also note that sunglasses won’t do anything for you if you are having problems due to flickering, especially from LED backlit monitors. We have talked about that extensively in the computer monitor thread.
