HoudiniCat

I wasn't on it for as long as you've been but when I stopped I had no side effects whatsoever. I also see Dr. Goodkin and he asked me to keep an eye on my BP readings to ensure it didn't get too low again. Thankfully, my BP stayed around a normal level for me and I didn't need to take any more meds. For me, I think those high BP readings was a signal from my body that it was healing itself and I really didn't need to supplement with meds any more. The Florinef was actually doing more harm then good at that point. Good luck.

Count me in too. I was dx?d with POTS back in ?07 and used to get these episodes quite frequently. But its been awhile since I?ve last had one and thought maybe they?d gone for good. Wishful thinking. I just had a really bad one on Sunday. Probably not even as bad as they once were for me but since its been so long since its happened it really freaked me out. The same intense shaky/dizzy feeling you describe with the electrical shock sensation running through your body. And then waves of burning heat starting in my chest and radiating throughout my body. Most times these episodes would come and go but sometimes (like Sunday) it was all day and night long. My POTS doc used to chalk this up to adrenaline surges and I really never found a medication that helped alleviate this. I don?t take any meds now (haven?t for years). Oh, also have the wavy, glary vision and raining down of eye floaters when this is happening too. Sorry, I don?t have any great advice just wanted you to know you?re not alone.

I've been seeing a cranial osteopath as part of my POTS treatment for several years. It was actually at the request of my regular POTS doc (a cardiologist) who found that integrating the cranial treatments into the overall gameplan was very beneficial to a great deal of his POTS patients. I was skeptical at first but have found it very beneficial. I've been feeling pretty good for the past few months and thought I was finally getting this whole POTS thing somewhat under control. But then - wham - I'm completely dizzy, tachy, blurry vision, shaky, burning/tingling skin - the whole nine yards. Who knows why - stress, the record-breaking 90 degree weather, or POTS just rearing its ugly head. I went to the DO yesterday for a "tune up" and he was rattling off all of my symptoms before I even had the chance to tell him. He did a treatment and hopefully, I'll start feeling better soon. All in all, I'd say definitely stick with it.

I've gotten two distinct kinds. One kind was a "brain zap" from an SSRI withdrawal (and sometimes also from various med) - like an electrical shock in your head. But I think you're referring to the other kind. Where out of nowhere your whole body jerks/jumps. Right before this happens, I usually get a chill up and down my whole body for a second or two before the jolt and sometimes get dizzy right after for a few seconds. Very weird - but I don't know why it happens.

I used to get the numb arms and legs while sleeping frequently when I first got sick and still do every so often. Like you say, its more than just the usual tingling sensations I get throughout the day. Feels like my arms/legs are completely numb, dead-weight and almost disconnected from my body. My POTS doc mentioned that many patients have a marked drop in BP while sleeping and that, while uncomfortable, is not gonna kill you.

I?ve got the same difficulty of being an overly sensitive person too. Any emotion ? either positive or negative ? other than calm and relaxed and it can send my nervous system into overdrive. Since my POTS dx however, it can send me into a full-blown panic attack. At work, it?s the worst because you want to appear professional, in control and not ?sick?. A couple of times I?ve had bad panic attacks at work and during and/or later when I confided in a co-worker, she had no idea I was going thru it while I was going thru it. So on the inside, I?m freaking out and falling apart but on the outside I still appeared calm. At these times, I relied on every tip I learned from reading (tons and tons of reading) about anxiety and panic attacks (without the POTS). Mostly tips you already know like breathing techniques, not avoiding these situations, etc. In the beginning I had a prescription for Klonopin. When a panic attack would strike, I would take one (or half) and the attack would subside. Little by little, I realized that I could breathe thru it and not have to take the pill. Just knowing they were in my purse (just in case) was a big relief. And I ended up never taking them ? haven?t taken one in years. Have you ever tried medication for these attacks? I also make a cup of kava tea to relax when I feel really anxious. I used to think there was no way I?d have time to make a cup of tea because the panic comes on so fast but I?ve learned that the ritual of making the tea gives me time to breath, focus and relax and by the time I?m actually sipping the tea, the attack has mostly subsided. I used to worry all the time that I might have a heart attack or was doing damage to my heart every time I had these attacks but I remember one of the techs who was giving me an echo once and my heart was going crazy and he was actually fascinated to see ?a young, healthy heart performing like the incredible machine that it is?. I felt like I was dying but he said confirmed that even though it was (mentally) uncomfortable, it wouldn?t kill me. I just have to trust that. Having an over sensitive nervous system feels like a curse most times but I think it is also a blessing. I?ve read many posts where you speak about stimulating conversations, vacations, arts, work, friends and family. It sounds like you have a true zest for life and maybe that is the balance in all of this!

I?m so glad you posted this topic. This happens to me on a regular basis and I hate it. On Tuesday at work, we were all talking about the blizzard that was predicted for the mid-Atlantic US . . . how we would probably be closing the office . . . and everyone was getting giddy about the thought of the day off and shared stories about the big snowstorms when we were kids, etc., etc. A little while later I developed a very fast HR, shakiness, blurred vision, ringing ears, dizziness and was barely able to walk I was so shaky. This lasted all afternoon and evening and it was extremely difficult to drive home from work. I relaxed all night ? and thank goodness we did have the day off because of the snow ? cause I was laying on the couch most of the day recuperating. Same thing happens if I get in an argument with someone or even a heavy conversation about anything ? good or bad. Weddings, holidays and family gatherings I have to be very careful about because I am almost sure to be having symptoms during and after. I agree that crying helps ease some of the symptoms ? but you can?t do that all day. I hate that you?re all going thru this as well but at least I?m in good company!

I occasionally get this too and it is terrifying. I can usually tell what will trigger an episode or symptoms as well but when the ?panic attack w/o the panic? happens, it usually comes from out of the blue with no warning. My symptoms during my episodes are the same as you describe ? all the while I have a kind of ?detached? feeling, very calm and definitely not panicking. Lying down during this does not help me either. Sipping Gatorade or water may take the edge off a little ? but not much. I think this is one of those things you just have to ride out while breathing and staying calm. As far as the frequent urination, my POTS doc said that in my case this might be attributed to low blood volume and/or our bodies not retaining enough salt/water. He tested me for ?diabetes insipidus? which he said a small number of POTSies may develop due to our damaged nervous systems ? but thankfully I didn?t have it. I hope these episodes are few and far between for you.

Yes, I get that from time to time too. I get very hot, irritable, disoriented, weak and it?s very similar to that pre-syncope feeling. I could swear I?m going to faint but when I take my BP, its very high and sometimes that feeling doesn?t go away even when I lie down. I had this happen in the ER once too when my BP reading was 148/120 (and its usually low too.) I?m shaky, weak and exhausted for hours (sometimes a whole day) after these episodes. I do believe its an adrenaline surge that some of us POTSies get from time to time but I would mention it to your doc.

Me too. Sometimes laying down doesn't aleviate all the symptoms. I've felt dizzy, foggy, exhausted - all while laying down. I get that disoriented feeling upon waking frequently. Feels like you're trying to wake up from anesthesia. Horrible!

Don't know if this may help but just throwing it out there. When I first got dx'd, my POTS docs suggested I compliment his treatment with cranial osteopathy. On my first exam withe the osteopath, he mentions that my vagus nerve was a mess and that would be where he would begin treatments. Went to him faithfully for over a year, in addition to my regular POTS doc, and most of my symptoms are now greatly reduced. Hope you're feeling better soon.

I used to get this all the time and it was one of, if not my most bothersome symptom. Nothing to do but lie down and put cool cloths on my head, neck to make it subside a little. Of course, then I would sometimes go into a fit of shiverring and teeth chattering. Also used these things - Cool-danas - that I got at the sporting goods store - bandanas that you wet/freeze that you wear around your head/neck, especially in summer. I also sometimes put cool, wet teabags over my eyes and put pressure on them. That used to be a quick fix for puffy eyes that I'd used before and remembered that it felt soothing so I tried it for the burning eyes symptom and it worked.

Yes, the scrolling text on the tv gets me sometimes as does standing up too fast or turning my head too fast. Or just looking up at the sky or walking across a patterned carpet (or past a fence). Or scrolling on the computer/iPhone. It stinks! Totally a POTS thing for me.

I used natural remedies to transition from the regular meds (with both the skepticism and blessing of my POTS doc) and they seemed to have worked for me. I took a combo of supplements - the only one on your list that I used was the CoQ10. CoQ10 claims to enhance the pumping action of the heart, output of blood, speed of heart muscle contraction and general cardiac efficiency. It also may also take the edge off fatigue. No experience with any others you listed.