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I like many experience migraines with POTS, but I tend to think that my migraines are being influenced by something else because they tend to be a little excessive so who better to ask. Basically, i get instantaneous migraines anytime I go anything. If bend over, get upset, try to exercise (walk), basically anytime I get up and move around. I'll get out of bed and start moving around and migraine, but as long as I'm in bed resting, I'm great. Does anyone else get this?

Thanks for replying Maggee! I'm taking 20 mg at a time as needed. I can take it up to 3x a day, but so far I'm only taking it once a day to get use to it. I think I will try your advice and see how that works, it has to be better than being disoriented and out of it, but then again I'm always kind of out of it. Life with autonomic issues is rather interesting isn't it! One minute your like next next hehe Good Times! Btw.... ugh is basically used to describe disgust or boredom.....Thanks again!

I recently started taking Propranolol and have experienced some rather strange side effects such as being disoriented, confused, and periods where I sit motionless, expressionless, and without moving almost as if I simple don't exist. Once it wears off I'm completely fine. I'm trying my hardest to hang in there to see if the side effects will go away, so that I'm not berated by my doctor if the medication doesn't work, seeing that it somehow means that I either don't know how to deal with my chronic illness in fact illnesses or I need to have a psychological evaluation. Ugh! ***! Has anyone experience anything like this? Did it go away?

I am wondering which medication(s) everyone has found the most helpful for treating their POTS symptoms. Currently, I am taking Propranolol, Fludorcortisone and Topiramate. Of the three I would have to say the most helpful is Fludrocortisone because it keeps me from fainting, and I have to say I prefer being conscious! Its actually quite nice! What about all of you, what medication gives you your secret ninja abilities . LOL!

Does anyone else sleep on a wedge (slight head elevation)? This was recommended, but is is actually making me nauseous, I have no idea why, but not all that suprising. Anyone have any knowledge or specifics on how exactly this is suppose to work? Really, I didn't think this was suppose to be too complicated or require instructions, but I must have something wrong. Guess it is time to get out my jack, ruler and protractor to try to get the angles right

Long story short, I have gradually improved over several years started walking and alternating light aerobic exercises, I feel great after getting done, but it isn't long until the back of my head and neck start hurting and I end up with a migraine. Anyone else?

Dino, I experienced the same thing, but fortunately Topamax is currently working well for me. I had POTS for several years and then all of the sudden started getting the strange symptoms like you described. I couldn't figure out what they were, but I knew that whatever it was it was something totally different that what I had experienced with POTS before and eventually my doctor told me that they were silent migraines and he was absolutely right. Basically, I had a constant migraine for over a year a straight 365 plus with out any relief at all and like you I could barely do anything, I tried all kinds of things, but finally got relief after starting topamax. I think mine was triggered by taking anti depressants. For whatever reason I haven't had much success and have actually felt a lot worse with the standard treatments. Right now I only take two medications, fludrocortisone for POTS and topamax for both migraines and complex partial seizures. I control the rest with the normal extra salt and fluid intact, wearing my compression stockings (when I must, we have a love hate relationship) and other things I have found that work for me. When you talked about having a hard time talking on the phone, using the computer, etc... I would experience the same thing. I still do at times, but to a much lesser an tolerable extent. It was so overwhelming. Eating was terrible also because it would cause severe pressure over my temples and I felt like they were going to explode, it was awful! I would also get severe facial pain and sometimes numbness. I am sitting here racking my brain trying to think of something that worked that I could tell you to try, but there really wasn't much for me either. When you tried Topamax what kind of dosage where you taking? Did you start off gradually or at a higher dose from the start? I started off at 25 mg and have gradually increased and it has worked out well so far. Well, I have to get going my husband is yelling at me to come watch the FSU vs Florida game. GO FSU, although he would disagree! I honestly hope you get to feeling better! Feel free to PM me with anything Take Care!

Hi Elena, I hope that your test results will be helpful in revealing what is going on and can help you in getting an accurate diagnosis! I was so scared to take the meds, but my doctors is very supportive and started me off at a very small dosage and is gradually increasing it. Once we get up to 75 mg he is going to do another veeg to determine how well it is working rather than just judging by how I feel so that we know for sure how well it is working and can keep the dosage as low as possible. I feel so much better since starting the meds and it has taken away a lot of the POTS symptoms or at least the symptoms I thought were caused by POTS. The type of seizures I have are complex partial seizures. Did the doctor that diagnosed you tell you what type he thought you had? If your afraid of the medication see if your doctor will let you start out with at a low dose so that it is less likely to cause symptoms and allows your body to get use to it a little at a time rather than overloaded for the start. It has been really helpful to me. If you have any more questions feel free to let me know I will answer what I can! Good luck with all of your test! I hope you get to feeling better soon!

Elena11, I was recently diagnosed with epilepsy on top of POTS also. At first I was very skeptical because I know how fainting can be misconstrued as a seizure, but since starting medication I am starting to feel much better. I had a prolonged eegs and veeg both of which where abnormal and showed that I have complex partial seizures so I guess I can't really argue with that. I really hope that you get to feeling better and hopefully you don't have seizures, they certainly aren't any fun! Take care and if you need someone to talk to please feel free to contact me! Please give us an update to let us know how you are doing!

Does anyone else feel as though they are totally oblivious to the world going on around them? I mean seriously, I was working on homework for a class I am taking, during that time my husband left the room, went outside, let the dog in and came back into the bedroom and I had no clue any of it had happened. Other times I will ask him a question and then keep telling him he didn't answer me when he already had 2 or 3 times. My kids will come up and ask me something and I am told I will just sit there and do whatever it was I was doing and totally not even realize they are talking to me. Sometimes it gets so bad that I can barely remember anything that has happened that day. I really don't have the problem in the morning after I wake up, but after the day goes on I feel more and more detached from my surroundings. It is such a terrible feeling to realize that you are missing out on so much!

I have been diagnosed with migraines. Like you I feel pain on both sides of my head, but normally I feel severe pressure that causes pain. I get them everyday and they last almost all day with short periods of relief in between. When I get mine I often get severe pressure in my temples that makes me feel like the sides of my head are going explode , severe scalp tenderness and an overall sick feeling to the point that I just want to die. I'm not sure what all of the triggers all, but normal things like sitting in a chair too long, sitting at the computer or exert myself especially doing normal household chores cause them. The worst is when I have to bend over or change positions a lot. Normally the only time I don't have one is when I am laying down. I would recommend at least speaking with your doctor even though they don't happen often. It is better to start now when they are few and far between than to start when it is really bad. Not that it will get to that point, but better safe than sorry! Best of luck to you and take care. Sending prayers and good vibes your way!

Hi, everyone I am new here. I am wondering if anyone has difficulty using their hands at times because of POTS? I'm not sure exactly how to explain it, but it is as if my brain can't tell my hands what they want them to do. Hopefully that makes sense. Has anyone else experienced this or anything similar?