masumeh

Thanks for your comments. Thankful, Yes the EEG was conducted while I layed down. They hooked 24 electrodes to my scalp and forehead, then blinked a strobe light in my face after asking me to hyperventilate for three minutes. I felt the left side of my body convulsing, like it does when I have episodes (sometimes). But I was totally conscious. I've been reading up, and decided that the next step is to see a neuro who treats POTS to assess my epilepsy diagnosis. That will take a few months, probably, because the closes listed on this physician list (Michele, you might check there for a doc in Long Island/NJ/NY area) is in Columbia, MD. I go to the US (VA) during summer vacation to see my parents. So I'll set up an appointment for that time. I'll be sure to let you guys know how it went. Thanks for all the support!

I'm updating on this post, started a long time ago. I finally found a good Neurologist in my area. He listened attentively to my history about POTS. He never heard of it before, but had me write down the name, my medication, and I also gave him this web address. He frowned when I told him that my convulsions during episodes was explained to me as a side-effect of too much adrenaline and shock after high tachy. But he didn't comment. He ordered an EEG. I told him I did one in the beginning of the disease, 7 years ago. He said he wants another one because things might have changed since then. He also ordered an MRI of my brain. Yesterday, we sat and talked about test results. He was nice, starting with the good news. MRI was normal. Then he moved to the bad news. EEG was abnormal and indicates epilepsy. This was strange to me, because I had always been told that a siezure means total lack of consciousness, but I can hear during mine. There is something called Partial Siezures (mine are complex partial siezures); and it's considered a type of epilepsy. But now I'm really confused about how my POTS and my epilepsy relate to each other. REALLY confused! Like, I might be having Autonomic Siezures, which would explain my breathing problems. Almost any siezure is preceded by a period of sinus tachycardia and followed by fatigue that can last for months. Some AS have bradycardia. Like, what's POTS and what's epilepsy for a person with both??? My cardiologist did a TTT that showed 75% blood flow deficit to my brain when standing. Does that mean that I might be having siezures as a result of cerebral hypoxia?? Like, I'm just completely confused and need to talk to a neuro who IS familiar with POTS. I'm not going to find that in Saudia. But I'm gonna start searching for one in the US, near VA where my parents live. Thanks for listening

this is interesting. think I'll try it too. It will be even more interesting if ppl can figure out WHY this helps POTS patients...may give some hints as to the mechanisms of the disease itself. I heard it works like an antibiotic and also improves circulation. My mother has always liked adding tumeric to her soups. I never liked the taste, but I'll try the GNC pills. Yeah, I was gonna add a warning to those who never cooked with it before: IT TURNS EVERYTHING YELLOW! All my mom's wooden stirring spoons are yellow. Let's hear some feedback when you guys have tried this for a while, please

Usually back of the head and neck kind of head aches are stress headaches. Tight muscles. Try relaxing, rolling your neck from shoulder to shoulder (in front, not to the back), taking a tylenol (this works well in any case, but especially if it's your muscles), and exercising (if you can). I found that I get some headaches when I am dehydrated, especially while in Midodrine. I also get headaches from sound and light. The light ones I get in the front, forehead area. The sound ones I get on the sides of my head, around the ears. It's not an ear ache, though, it's a head ache, very deep. This is really POTSy, overstimulation of the nerves. Good luck reducing your headaches....although it's not usually the worst of our symptoms, it can be very debilitating and of course annoying and mood altering.

something to remember with lights and especially "after images" (which are things you see when you close your eyes after looking at something)...the nerves in the eyes send signals to the brain to produce images you PERCIEVE based on light. It is all light...color is light, differentiation between lines and so forth is different light waves. It's all light...that is the only kind of signal those nerves are capable of sending. Try closing your eyes and pressing on your eyelids...you will perceive light flashes (although your eyes are closed). That is because the pressure stimulates the nerves in the eyes, so they send a signal to the brain that there is a light source. They have no other option, when stimulated. If you stare at anything long enough, you will see an "after image" when you close your eyes. It will be the reverse (in primary colors) of the original image. That's all normal perception. I read that POTS patients get vision oddities, such as tunnel vision and other funny events. We have two problems that probably contribute to this: poor circulation (blood deprivation to brain and eyes), and high adrenalin (that stimulates nerves so our senses--including sight, hearing, touch--are too ready to respond and therefore over-respond). If it happens only when you look at TV or a computer screen (or other light sources), try wearing artificial light protection glasses. It's something most people have in their prescription glasses. You can ask the pharmacy to make you glasses that are non-prescription which have those clear, light-protective lenses. For me, I choose to just limit TV and computer time because it's annoying wearing the glasses.

Hi, I tried florinef and couldn't tolerate the side effects. I actually had psychosis. It's the first time I ever took a med without reading the pamphlet of side-effects beforehand. About half-hour after taking the first pill (don't remember dose, but I think it was high), I got a strange headache. Then I rushed to read the pamphlet...that was a possible side effect. I soon felt weird, like all the things around me were disconnected and floating. Then I just felt like I had to sleep. I knew my logic was slipping, and I was afraid of saying something strange, so I just tried to wait it out until the pill wore off. It took all day and night, but I was normal the next morning. This is really rare though. I have never met anybody else who had that reaction to florinef, although it's possible with any steroid (and florinef is a steroid). Yes, hot-cold feelings are a big part of POTS for many sufferers. That's because temperature regulation depends on the autonomic nerves; they dialate and constrict blood vessels in to cool or preserve body heat according to your homostatic needs. Ours doesn't work right, so we need to control our environment, etc. Getting hot can be a precursor to fainting, tachy episodes, etc. When we faint, we might feel clammy and cold becuase of the blood pressure drop. And you might notice that your extremities (including fingers, toes, and nose) are abnormally cold--that's due to circulation problems. It really bothers some people because it can be so cold it feels achy, even if the rest of the body feels normal. I get it, but I don't mind the feeling...in fact, I play tickle games with my daughter (age 5) when I get "cold fingers". It's fun! Below 60 is bradycardia (slow), above 120 is tachycardia (as far as I know). When I calculated my upper parameter during exercise, it was 120. It really depends on your age, body type, height. You can do a quick online search for the exact parameter calculation. But 80 is just right for most adults. 200 is considered extreme tachy. Good luck with the florinef. If you don't like needles, try self-talk to cope...like ask yourself if it could be worse, and convince yourself it's not a real threat, rationally...and also, just don't look

Thanks for the replies It's always reassuring to know that I'm not alone, especially when I start to think that the symptoms are getting out of hand and potentially dangerous. The "myasthenia gravis" tip was interesting when I read up on it online...and my POTS doc did prescribe something to help strenthen my muscles that treats that disease...but I couldn't tolerate side-effects. I'll keep track of things, and hopefully update you guys when and if I locate a neurologist who can answer the question of whether there is another underlying cause for this weakness and breathing oddity. Thanks again!

Hi all, I have been experiencing new symptoms that are distrubing me because it feels more neurological than just POTSy. I'm trying to find a good neurologist in my area (difficult in Saudi Arabia). And when I return to the US, I'll get in touch with my POTS specialist (cardio) there. In the mean time, did anybody experience this before??? I now feel that my muscles are just deteriorating. Additionally, I get tremors when I try to push myself physically. Like, when I saw the dentist, my facial muscles started spasming (painlessly, tremor-like) because of trying to keep my jaw open. My whole lower face was twitching uncontrollably! Then I started to notice that it happens in my arm muscles, leg muscles (but that was easy to avoid and ignore because I can just stop whatever I'm doing and relax). Even my stomache muscles were twitching the other day! Another new symptoms is that, when I have episodes, they're dominated by breathing problems. I also black out, feel pain in my head, get weak all over, etc. But now, in addition to the "normal" episode stuff, I feel that I am not breathing sufficiently. My chest feels like it's just going to sleep, and definitely it's not breathing in regular pauses and patterns. Is this POTS, or something else? Thanks

Hi, I've never taken that particular med. But when I get intolerable side-effects from a medication that also gives me something I need, my doc and I try cutting the dose before actually deciding to drop it entirely. Often, cutting the dose in half waylays side-effects and I can continue enjoying the benefits of the drug. If the dose is too low to cut, I take a "medication vacation" for a few weeks, then try it again. Often my body accepts it after this break. Good luck!

so wierd you mention it...I recently discovered that, on the days when I can't make it up the stairs of our building to access my apartment, if I just lean back against my husband and walk up (like I'm tilted against gravity so it's like walking on a flat surface rather than upward), then I can make it just fine. (By the way, this works bc my husband is about twice my wieght...don't recommend it if your companion is lighter than you...you'd probably both end up falling down the stairs!) But once I need to lift my thigh up, like the motion used for climbing stairs, I'm gone. Don't know why.

It's really horrible to feel invalidated like that...your principal sounds totally unsympathetic. Teaching jobs are difficult. They are draining, you catch everything from the kids, and people expect you to perform robotic consistency. There isn't a lot of room for YOU, what you need...like a break! But, you know, that's because it's all about the kids. They need so much from you...your school administrators have got to provide you the support you need to give back to your students. Does that make sense? Too many "you"s in that sentence. You get me though. I think you might look for a more low-energy job. But don't give up if this is what you love doing. Rough patches do pass, eventually.

Happy it works for you. I've heard that a combination of Butcher's Broom and Licorice Root worked for another POTS patient I met at my doc's office. She takes only these and works a full time job without glitches! Wow. I tried it, but the Licorice Root actually made me feel worse (more foggy, tired). Butcher's Broom destroyed my stomach after just a few pills. Painful, crampy, couldn't eat.

I recently consulted my POTS specialist, a pediatric cardiologist, about plans to become pregnant. I take Midodrine (have on and off for three years about). He said Midodrine is no problem during pregnancy, and that it might help me have a more normal pregnancy (my first and second pregnancies occurred before diagnosis and they were horrible). I asked about reduced blood flow to the placenta, and he said no chance, it doesn't happen, he had lots of patients go through pregnancies on Midodrine with no detriment to the baby. I am still concerned because Midodrine at high doses (my original dose some years ago) stopped my menstral cycle for a couple months. So I do believe it is possible that it can affect that area of the body. But my doc's very experienced, so I guess he knows what he's talking about. I'd be nervous anyway though. But it's not like blood pooling is good either, right? So we can't exactly win, can we? Good luck! I hope all goes well. Usually we worry waaaaay more than we need to.

echoing Sunfish: there are a few strings in this forum about mestinon experiences, which you can find and view through search. My experience was bad, lots of side effects. It did tighten my joints (doc wanted it to treat muscle degeneration). But it made me urinate like tons....so, dehydration...zero tolerance...bad POTS flare-up ensued. Others have different reactions. Hope it works for you.

first 3 pills I tried caused a flare-up of POTS symptoms because it made me pee like mad

I had recurrent chest pain, especially bad when laying down, for several weeks. I thought it was my MVP or POTS. But it turned out to be my aesophogus (spelling?). That was wierd bc I didn't experience acid reflux, yet it was burning up my tract and causing cardiac pain. I took something that specifically stops asophogeal spasms, and the pain immediately stopped--that's one pill stopped two months of pain! Wow. I didn't even believe the doc that prescribed it, I just thought "what the heck, let's try it anyway...but it's not gonna work". It worked really well, thank God. I do get chest pain with POTS, however. It's difficult to distinguish between the two. Don't know if this might work for you. But I hope you find your answers soon.

my lowest recorded was 60/30. It happened frequently for several years. Never bothered me though. Nurses always thought their machines were broken...lol. When I tried explaining that it's usually low, they were like, "No, but this is impossible." Then they just fibbed the records to something normal. Gotta love medicine!

Over the past 6 years with POTS, I found social life challenging too. Obviously, when my energy changed, my activities were blasted and therefore friendships were strained bc the things we used to do together weren't happening for me, but still going on for them. Different worlds. I was upset, and felt abandoned at first. I thought our friendships were much deeper. Like I needed them somehow, but no one showed up at roll call. That hurt. But over the years, those friends that I thought split are still there somewhere in the background. I know that their lives are fast paced, too much to keep up with. But we see each other a couple times a year, send emails back and forth around holidays and special events, etc. I have to make due with that because I CANNOT physically do anything more--not because they are ditching me. I had to accept that limitation. I admire those friends for caring, staying around, and adapting in the relationship...of course, I miss "the good old days" too. Before POTS, I was one of those "friends are everything" people. But you know, their lives can't stop just because ours did. It's not their fault we can't keep up. And we really can't expect them to slow down for us. That's how I see it.

Hi all! Just wanted to share something anecdotal that my doctor recommended also... I've had major memory problems since about the 4th year of having POTS (now passing 6 yr mark). Midodrine helps loads. But I cannot tolerate it very much any more. My doc recommended blue berries, almonds, oceanic fish, egg whites, and mushrooms to boost my memory. I was skeptical, but it actually worked! Especially the blueberries. I ate a lot of blueberries and fish while in VA this summer, and my memory got much better. In fact, I felt better overall. I can't eat them now because I'm back in KSA and they're not availible here. So I had the memory problems creeping up again after I ran out of Odwalla antioxident bars (I packed like 30 with me when I left VA). Now I found Flax Seed Oil capsules and Cranberry capsules at the health store here...they both have antioxidant power, so I tried it and it is also helping. I feel more "together" mentally. And my energy and mood are better too. I'm not sure if this would work for others. But it seems clear that the antioxidants are an important part of my improved memory, since when I run out it quickly reverts to serious memory problems (recall difficulty).

Do you mean NOVA systems? Or just a hospital or doctor in Virginia? Or Virginia Hospital (if so, where is that, exactly)? I'm currently in Saudi Arabia, but I grew up in VA and I return home every year to see family and check up medically with my POTS specialist there. He's really awesome, and I found him through this website's doctor directory. If you can go to him, I highly recommend it. He's very POTS savvy; his own son has the disease. He's also extremely optimistic and energized about the potential for recovery and living a normal life. I think you can get info from their website: www.childrensheartinstitute.com Or you can check the doctor directory on dinet.org for VA. My doc's the Northern VA one, Dr. Abdullah. Hope you find a good doctor soon.

Lindajoy, I've been out of the forum loop for some time, so I just read this post. I hope that you are feeling better now. We never know where relief will come from, but somehow, if we hang on, it comes. Maybe we don't actually get better physically, but something happens to lift us a bit. If we accept it, the good events, then they will ease the burden. I think we often get focused on the health problems, because we're trying desperately to solve them, and we neglect other areas of our life that are meaningful and blessed. It helps to just step back from the health problem and look at the total picture--how we have friends and family who love us, how we're doing OK in other ways, how we have spiritual sources of strength, etc. Because we can never be healthy, it's not fair to focus on that part of our life...it's not fair to the rest of our life or the rest of our identity. Don't know if this helps you, but it sometimes helps me, so thought I'd share. The basic gist is to concentrate on a part of your life that you do have control over, a part that is confidence-building, something meaningful and reaffirming. Just allow yourself to forget the rest for a while...it doesn't need to get solved NOW, not if it's driving you nuts trying to solve it. Give yourself a break from thinking about it.

No test? She diagnosed you with low progestrone without a test? That's really flippy. I can see why you are angry. Good decision, changing docs. Hope you land on a better one soon.

I've been tested for hormone levels and they were all normal, including progesterone. I don't have anxiety or problems with my period (except heavy flow). I do get brain fog. So maybe your period problems are the progesterone, brain fog is POTS in general (insufficient blood flow to the brain)? Helps to compare cases I guess.

Florinef is a steroid, so it can have psychological effects. If you are noticing a change in yourself, I'd say listen to your body. Everyone is different in the end. Maybe you should go back to your previous, well-tolerated dose?

There's another post on Mestinon somewhere in here. I started on 60mg, 3 times a day. But I couldn't tolerate even one day. I stopped after the second dose. My POTS doc said it's only effective 20% of patients, a very low success rate. So he wasn't surprised and said that we'd better let it alone. Hope your experience is better. Some others posted previously that they started on small doses and tappered up. Good luck!