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.

When I was first dx?d with POTS, I had a similar experience where the meds kind of helped the BP and HR issues yet I was still dizzy all the time. My doc always wanted me to try and stay on meds for 3 months to see if they were helping at all (unless I had a bad reaction then we stopped sooner). For me it was over a year (maybe even closer to two years) that I would still get waves of bad days and even new symptoms popping up before things started to even out.

I see Dr. Goodkin as well and took his advice and began seeing a cranial osteopath early on in my treatment. I felt the cranial manipulations were an important part of my recovery and a perfect compliment to the traditional meds route. Even though its not chiropractic, that?s the best way I can describe it . . . its like chiropractic for the head. The osteopath gently works on your head to work out any ?knots? that would be obstructing your nerve ways and blood flow resulting in a more balanced HR and BP and hopefully lessening (or eliminating) numerous other complaints shared by POTS people. I could feel incremental progress each time I went (for over a year) but many patients report dramatic results from one or two sessions. I was skeptical at first but figured I had nothing to lose. Definitely worth a try. Good luck with your session.

I used to get this all the time early on and it was one of my most bothersome symptoms. It felt like I had a really bad sunburn and at its worse, I felt like the blood in my veins was actually on fire. Also numbness and tingling in my hands, legs, etc. It could happen anywhere on my body but mostly showed up on my face, neck and chest. My POTS doc said that although the HOTS was not one of the symptoms shared by most of his patients, that he had seen it quite often. I tried Klonopin and Lexipro for it but they really didn?t do too much to alleviate it. Nothing to do but lie down and put some cool cloths on the burning areas till it subsided. As all of my symptoms have gotten better over the last few years, so has this one, although it does still show up from time to time. Hope you get some relief soon.

I?m one of those who just hate, hate, hate any type of meds and always thought I could cure whatever was ailing me with natural remedies, diet, exercise, etc. When those didn?t work for my POTS, I had to start trying meds and found my best combo was Toprol and Klonopin. I used to drive my doc nuts because I would stop taking them too soon and not see much improvement in my symptoms but then again, there was no great improvement while taking them either. After about a year, I slowly switched from the meds to more of the natural remedies and that seemed to work for me. I also got the killer headache (among other nasty symptoms) when stopping the Klonopin and took some Exederine Migraine Formula to at least make them bearable.

I can sympathize with you Lissy. When I first got sick and then finally got a POTS dx, I was convinced that it was not just POTS alone ? that there had to be something else wrong to be causing all these symptoms. And then to have docs kinda dismiss you, write a script and send you on your way was just amazing. Once an ER doc (who was looking up POTS on his computer) was asking me about the different docs/tests/meds I was on and was getting so confused. Finally he questioned that if all the docs I see were like players on a football team, then who was the head coach . . . who was in charge of coordinating everything and developing the plan? And I said ?Me!? I finally got in with a great POTS doc who explained a lot. Said although I?ve got touches of CFS, NCS, NMH, that it?s easiest just to classify them all under the POTS umbrella. He said he thought I was one of the ones who will never know the hows/whys as to how I got POTS and I could pursue more testing (of which I did numerous other tests) or try and come to terms with it and try to develop a treatment and lifestyle plan. In the beginning there were days and weeks when I had extreme fatigue and constant brain fog but as I?ve been getting better, those symptoms seemed to have improved. I still get different symptoms from time to time and I guess you could classify them as ?flares? but after dealing with this for several years I just think of it as having some days worse than most (or some parts of the day worse than others). Hang in there!

I too get this from time to time and for no apparent reason. You can understand it if you?ve been on your feet for a long time, climbing stairs or generally over-doing it. But when you?re just sitting at a computer and typing or relaxing and watching tv and it happens, its puzzling. When this happens, I just have to take a few minutes, try to relax and count my breaths till it passes. After years of this, I know its not actually going to suffocate me and kill me (although it sometimes still feels that way). Just another really annoying POTS symptom to deal with.

I had crazy panic and anxiety when I was coming off Lexapro and then Klonopin ? and then the alarming brain zaps kicked in ? but I didn?t have the kind of pain you are describing. Coming off these drugs was one of the hardest things I?ve ever done in my life and for most people it takes weeks and months of tapering down to get through it with the least amount of problems. I?d call my doc and discuss if you?re not feeling better. You can tell the difference between ?horrible and uncomfortable but I can see the light at the end of the tunnel? and ?there?s absolutely no way I can survive this for another second?. Good luck!

This was one of my first symptoms. I'd be sound asleep and then woken up by my heart running like a freight train for apparently no reason. My POTS doc likes to say 'that's what puts the P in POTS'. While many POTSies would get tachy going from sitting to standing, I would get it just from changing positions while sleeping. It got so that I actually had to sleep with one eye open to remain in one position and not roll over/around during the night to get any kind of sleep at all.

I?ve had every symptom you mention. When first dx?d, I would get this 24/7. Now, it?s been almost 3 years and it feels like its subsiding. Still, at least once a week or so I get that ?drunk? feeling ? the kind of light-headed and floaty, out-of-balance feeling. Almost always still get this sensation in the supermarket ? between crowds, florescent lights, loading and pushing the cart around, etc. ? I know this brings it on for me. Changes in weather, stress, and the ever popular ?no-reason-at-all? also bring it on. Vision and hearing go crazy. Hard to keep things in focus (doubly so if in an over-stimulated environment). Sometimes it feels like I?m ?over-focusing? on everything. Ears feel full and buzzing ? difficult to concentrate on conversations ? especially if there?s lots of background noise. Brain fog really kicks in - short-term memory lapses, confusion, total mental and/or physical fatigue. My POTS doc said all these symptoms could definitely be POTS-related but encouraged me to go for further testing (since I was convinced it was way more than POTS). And after years of testing, they came back with nothing ? just POTS. I tried Klonopin which seemed to help but knew that wouldn?t be a permanent fix so I?ve just learned to live with it.

I think it?s a slow journey for most of us ? this POTS thing. Dr. G. tweaked my meds several times throughout years of treatment. Looking back now I can honestly say that I really didn?t give some of them a chance (some prescriptions I filled and didn?t even try). But if you stick with the cranial osteopathy, I think you?ll find that is a unique kind of ?feeling bad? that you?ll be able to equate with the treatments as opposed to a different kind of ?feeling bad? that may be from new meds. Hope that makes sense. I?ve really learned to listen to my body now though and can tell when a med is doing more harm than good or simply not making me feel any better at all.

In the beginning, I had the same experience of feeling worse after each treatment. When I would first stand up after treatment I felt like I was totally drunk. Would sleep in the car the whole ride home. And always scheduled my appts. for Thursdays so I could take Fridays off (plus weekends) to rest. I only went once a month as I felt it would take me days to recover and then a few weeks to get the full effects of the therapy. I know some people who?ve felt significantly better after 2-3 treatments but honestly, it was a slow process for me. My family was very skeptical and swore he was making me worse (not better) but since nothing else was really giving me the results I wanted I decided to stick with it.