Katybug Posted August 20, 2011 Report Share Posted August 20, 2011 Hi everyone. I have really been struggling for the last month. I had to go off my POTS meds for some tests back in July which set me back to having maybe only 1 or 2 "good" days a week. I consider a good day when I can do 2-4 hours of productive activity and I can drive myself at this point. I was just starting to feel a little bit better (maybe 50% "good" days) when my doc started me on Topamax because my migraines had gone haywire. I was having them 3 or 4 days a week and some were lasting up to 4 days. Since starting this medication it seems my POTS symptoms have started to get really bad again but the side effects of this drug seem to be similar to POTS accordng to the dug pamphlets. Does anyone have experience with this? I just hit week 4 when you get to the full dosage and the migraines have gone away but I couldn't even complete a load of laundry by myself and I can only shower by sitting on the floor this week I am so sick with POTSitis. There has been no leaving the house and no driving for weeks. I am not sure I can stick with this med if the POTS will be this bad on it. Any feedback is appreciated. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted August 20, 2011 Report Share Posted August 20, 2011 My son took Topomax for 5 months 3 years ago, before he was diagnosed with POTS, for horrible migraines. His migraines stopped immediately, but his nausea increased and brain fog was terrible. He stopped taking it after 5 months because the side effects were too much. The nickname for Topomax is Dopamax; he sometimes couldn't speak an entire sentence, the words weren't there for him. Christy Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted August 20, 2011 Report Share Posted August 20, 2011 My mom doesnt even have POTS, but couldnt take it. She forgot words and felt "doped" up. She slept a lot and came down with severe depression. It all stopped when she stopped taking it. Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 20, 2011 Author Report Share Posted August 20, 2011 Thanks for your replies. I had to take a dose of Belladonna last night because my GI symptoms got really bad. I don't take it often because it is addictive, so I have not taken it since I started the Topamax. It calmed all of my symptoms right away. Within an hour of taking my nightime dose of Topamax I was a mess all over again, so it really let me know that it is the medicine making my symptoms so much worse. I am calling the doc on Monday to find out how to get off of it. I think I might need to ween off. Quote Link to comment Share on other sites More sharing options...
stacdliw Posted August 21, 2011 Report Share Posted August 21, 2011 I've taken Topamax before I was diagnosed with POTS and since my diagnosis. I can honestly say that I have not noticed any difference with my POTS symptoms while taking Topamax. Yes, I do experience the brain fog, but I just attribute that to the dysautonomia and my age. It helps with my migraines so much, I am afraid to stop taking Topamax. What other migraine prevention medications do others take that are as effective as Topamax? Quote Link to comment Share on other sites More sharing options...
heathmcev Posted August 21, 2011 Report Share Posted August 21, 2011 I just finally got topamax out of my body. I was on it for 3 months - the last if which was spent gradually decreasing the dose to wean off. The whole time I had severe nausea, zero appetite (lost 12 lbs!) and at the highest dose I reached (75 mg) couldn't get out of bed & felt really shaky. I also thought it was a bad pots crash until I realized that instead of slowly getting better with bed rest I was getting worse daily. I then saw that this trend had occurred since I'd last up'd my dose. Then I started getting itchy all over - a sure sign of a drug reaction. So I immediately started weaning off. The exhaustion improved within a week of being on a lower dose. Just a warning if you're nauseous - that didn't stop for me until I'd been off the med completely for a month! My doc said I'm a slow metabolizer tho - so I'm sure most people don't have that long a wait to feel better. I finally got my appetite back last week!Feel better soon! You'll know it was the topamax pretty quickly if you start to lower you're dose and feel better in a week or 2... Quote Link to comment Share on other sites More sharing options...
lizababy Posted August 21, 2011 Report Share Posted August 21, 2011 I started the topamax before the dysautonomia. I can tell you this about the topamax and the migraines.My doc recently told me that my migraines were better because my bp was stabilized. I have such severe headaches every single day when my bp isn't stable. The other day I woke up and it felt like someone had literally beat me in the head with a baseball bat it was that painful. Doctor said that once my bp is stable that the headaches will be better because the blood flow is going back to my brain as it should be. When I went on Topamax around 2002, I found websites that referred to it as Stupamax because the brain fog on it is horrendous. I slowly increased my dosage over a period of six months (mind you I take it as my single method against grand mal seizures and to prevent the migraines that plague me with them) until I reached 300 mg a day. When my dose got higher and higher, I barely slept and could not think straight. I had the random numbness and tingling that I have now. Not to mention the lack of appetite. I ended up dropping an enormous amount of weight because somedays all I would eat would be a handful of skittles. I had gained an enormous amount of weight with a previous seizure med and dropped until I was 98 pounds (I am 5'3") on the topamax. The side effects eventually went away, I started eating again and now I experience no side effects from it. It is actually the only medicine that has kept the seizures at bay. Up until the dysautonomia became an issue, I was not having problems with migraines.That being said, from my understanding at my last doctor's appointment, if your blood pressure is not under control then the intense headaches will not be under control. Quote Link to comment Share on other sites More sharing options...
Meg.Limbach Posted August 25, 2011 Report Share Posted August 25, 2011 I have taken Topomax on 2 different occasions (about 10 years apart) and have had to stop it because the side effects were so awful. My forgetfulness was absolutely ridiculous.. I would be driving somewhere, then all the sudden forget where I was goin. It was rather scary. Another horrible side effect was the tingling in my hands and feet. It would get so bad I would cry. I have had Complex Migraine Disorder for 8 years now and although Topomax did help with the migraines, it just wasnt worth the side effects. I was on in after being diagnosed with POTS but didnt notice any changes in the POTS symptoms. Quote Link to comment Share on other sites More sharing options...
Darlene Posted August 28, 2011 Report Share Posted August 28, 2011 i couldnt think clearly while taking it, and it didnt help with the migraines. i quit eating high histamine releasing foods, foods that contain msg's, and foods high in tyramine. this really made a difference. Quote Link to comment Share on other sites More sharing options...
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