HoudiniCat

I get this all the time too. I don?t panic anymore but can actually feel the adrenaline coursing thru my veins, setting off all kinds of symptoms and would love to find a better technique to make it go away faster. My POTS doc explained that many patients have increased adrenaline production and/or sensitivity to adrenaline. Sometimes POTS symptoms will show up as an ?autonomic manifestation? as in the case where you?re standing too long and get tachy, etc. Other times symptoms show up as a ?neurological/cognitive manifestation? wherein triggers can be many things such as light/noise sensitivity or emotional overload. There are many others ways symptoms come out (fatigue, heat/cold intolerance, etc.) and they can overlap each other and be different in each and every patient. In a normal person, you could exercise/move around to get rid of some of the excess adrenaline but POTS patients have to be careful doing that as the emotional/stress demands will sometimes take away from ability to do anything physical. Sometimes I can get up and take a short walk to relieve it somewhat ? other times not because I?ll also feel weak and shaky. At those times, I mostly just have to just ride it out. I also agree with Sandy on the 4x4 breathing (also called ?square breathing technique?). I?ve used that many, many times.

I never had motion sickness before getting POTS so I believe the two are connected. Long car trips, train rides, etc. make me queasy now. I went away on a little vacation last weekend (first time since being dx?d 2 years ago) and thought I?d go sailing. Big mistake. I was actually getting sick on the floating dock prior to getting on the boat. Downed some water, salt, bonine and it barely took the edge off. Sick for the whole day/evening. Guess that?s one more thing I won?t be doing for awhile. Urrggghhhh!!!

Yes, I go back and forth with the thought of taking on more responsibility and advancing my career or staying where I am now. But ultimately I feel like I?m still not 100% so I don?t think it would be fair to myself (or my firm) to jump into a new opportunity now. I?ve definitely learned from this POTS experience that you need to put your health first. Other opportunities will come along. Listen to your body ? it will tell you what to do. Same holds true for other things outside work ? there?s a dozen things I want to do (hobbies, travel, etc.) but I?m learning that maybe now is not the time for them. Taking time to heal, recover, or at least manage my illness the best I can now ? maybe I?ll plan out my ultimate vacation or take on online course - plenty of time to rule the world later.

I?m glad you enjoyed your holiday. I?ve had the low BP and high HR issues with POTS from the beginning. I?ve been feeling pretty good for the last few months but now notice that sometimes I get symptomatic (dizzy, fatigued, vision/hearing problems) even when my BP/HR are fine. Sometimes the HR will jump up quickly when I stand and then it seems to correct itself after a minute or two. Same with BP ? sometimes it will drop for a minute or two and then come back to normal. My POTS doc seemed to think this is all POTS-related. Last time in his office, I had no increased HR on standing (and no decrease in BP) and he told me I was getting better. I plan to ask him on my next visit why I still get the other symptoms then-if HR and BP are normal. Maybe this is all part of the healing process? I'd hate to think this is another issue and have to start more testing. Did your BP drop on your original TTT? I would check into that. When I used to have BP drops upon standing/walking, sometimes drinking a big glass of water (or Gatorade) would help a little.

I also got one of those little, inexpensive, hand-held vibrating massagers. Using it for a few minutes on the back of my head, around my neck and shoulders seems to give me some relief.

I had the exact same symptoms as you (plus more) when I first got POTS ? fatigue, off-balance, dizziness, ears ringing/buzzing, wierd tingling/vibrations, vision problems, etc., etc. I also quickly dropped about 25 lbs. Some docs thought I had an eating disorder and/or anxiety/depression ? like who would NOT be anxious, depressed and unable to eat when the docs don?t know what you have, what to do about it or where else to send you. I swore it was something else more than POTS but after a zillion tests that all came back fine ? I?m chalking up all my symptoms to POTS. Finding a doc who's knowledgable about this condition is most times difficult ? but definitely worth it. Hang in there ? it gets better.

And the ones that 'don't get it' will never get it. They've seen me as pale as can be, dragging myself thru the office trying to work and have to lay on the floor or surely faint and some will still think I'm being a drama queen. I've worked at my company for a long time and get 4 weeks vacation. When co-workers ask what great vacation I have planned, I let them know that I take my vacation days one at a time in order to fit in all my doctors appointments - some of them 'get it' when I say that. And the website - butyoudontlooksick.com - has great t-shirts, hats, pins, etc. that get the message across (nice and sarcastic). I keep my "My disabling chronic illness is more real than your imaginary medical expertise" mug on my desk at all times! Hang in there.

I used to get this sensation frequently and still do every once in awhile. It usually starts in my toes and washes up over me to the top of my head or from head to toe or starts in my chest and then radiates up/down/all over. I also get random pin-prick sensations (anywhere on my body) from time to time. I used to think it could be from meds but I?ve changed several times and still had this happen. Now I?m on no meds (thankfully) and it still happens. My POTS doc could not pinpoint a cause either but said it was most likely from a misfiring CNS and/or CNS trying to readjust itself. Not dangerous but a really strange feeling I?ve come to accept and live with. Thankfully, they only last a few seconds and they?re gone.

My POTS doc had me try d-ribose because he'd had 'some' success using it with his POTS and CFS patients. Unfortunately, it didn't work for me but since it's natural, with little chance of side effects (and since he gave me a free month's sample) I figured it was worth a try. It's a powder (Corvalen Medical Food) that you mix with juice, sprinkle on cereal. Sorry but I haven't found anything that helps when that intense fatigue hits. When my body says it's had it, it's had it, and laying down is all I can do.

Interesting question. I just went to my POTS doc this week and he ordered another round of blood work to make sure I wasn?t anemic. Said I?ve been ?borderline? on the last 2 blood tests (news to me) and wanted to make sure this gets under control. He said anemia on its own will cause fatigue, tachy, exercise intolerance, shortness of breath, brain fog, dizziness, tingling, "pins and needles" sensations, clumsiness, muscle stiffness, etc. and that anemia has a great impact on POTS patients. He believes all these things are connected and once the anemia is treated, I will see significant improvement in the POTS symptoms. For now, I?m just taking a multi-vitamin with extra iron but may have to have a stronger, prescription iron supplement to see any improvement.

I?m sorry you?re experiencing this constant dizziness. All of this started for me with a faint and fall and I woke up with dizziness/light-headedness almost 24/7. There was dizziness when walking, standing, sitting, even laying down sometimes. I think I had every test in the book done and they finally came back with a POTS dx. I swore it was an ENT thing, because my balance was off and I got that ear popping/ringing sensation a lot. Had a lot of tests done and for me, it was just the POTS messing with my vestibular system (not a separate issue that they could find). I also had a lot of vision problems, had a bunch of tests done there ? and nothing. GI problems, nothing. Sometimes when I?m symptomatic, I can connect it with a reason (low BP, etc.) but other times not ? my BP is fine and yet I?m as dizzy as can be (definitely not enough blood flow to the brain). Are you on any meds? If so, sometimes it takes a while for them to kick in and give you some relief. Other times, they have to be adjusted. From reading these posts, it seems that there are almost as many different treatment options as there are those with POTS. Hope you?re feeling better soon.

Yes, in the beginning I was nauseous a lot and had little, if any, appetite. I dropped about 20 lbs. in 2-3 months. I had to force myself to eat. Between the nausea and the stress of not having a dx, having a million tests done, then finally having a POTS dx and trying to get a handle on what that meant, I think that really killed my appetite. Slowly but surely, it did come back though.

I used to get tachy upon rolling over in bed all the time but fortunately that symptom has subsided for me. Even if I rolled over in my sleep, my heart would start pounding, all the other symptoms would start and I?d have to lay there for mins/hours before it subsided. My POTS doc told me not to be overly concerned about this ? said it was cause I was changing position (as in the ?postural? part of POTS). Somewhat reassuring but its still very scary and horrible when it happens. I also get clumsy at times ? tripping, walking into doors, dropping things, etc. Hope you?re feeling better soon ? watch those stairs!

Definitely get this symptom too. It?s listed on the ?What to Avoid? page here as well. Putting things up on a high shelf, taking curtains down, painting/wallpapering ? and definitely exercising (or trying to) like that will bring on symptoms for me. Depending on how much I push myself, I?ll get that sick, shaky feeling for minutes, hours, days. I agree that it?s not ?panic?, just ?POTS?.

When this happens to me, I try as hard as I can to walk away from a big, stressful argument (with my partner, friends, family, co-workers, etc.) as I know I will have to pay the consequences for it later. How frustrating ? my pre-POTS self would never have backed down like this. My body is also more in balance now than last year and I hope and pray that I will continue to get better. And when I do ? watch out ? no more backing down. For now, a nice little fantasy about what I will say/do when an argument starts. Taking care of my body is priority #1 right now. It sounds like you have a loving and supportive family who you could turn to if need be and I doubt that they would feel imposed upon to see you and your daughter happy. What can you do if you can?t leave ? go into another room and watch tv, go outside, go for a drive to clear your head, read a book or magazine, listen to some relaxing music, phone a friend, meditate, pray ? whatever you can think of to stay calm and take care of your body. I know that?s easier said than done. Wishing you peace and good health.

Yes, I?ve experienced this too. The ?sunburn? feeling was one of my first major symptoms ? a burning, red hot sunburn on my face, neck, back, chest, thighs. The only things that seemed to give me any relief were to put cold cloths all over the burning areas or to take a cool bath. The twitches and tremors came later. My body shook all over like I was freezing, teeth chattering and everything, although I?m not cold. It was a big effort to concentrate on walking or moving ? definitely had to ?think thru? the process. I see a cranial osteopath (recommended by my POTS doc) and he believes these symptoms are from damage to the vagus nerve and hypothalamus ? either as a result of injury, stresses, normal wear and tear on your body. I?ve been seeing him monthly for a year and have had an 80-90% reduction in the frequency and severity of my symptoms. Can?t say for sure if it was all his treatments or a combo of meds, vitamins, time, etc. but I do know the vagus nerve controls the tremors and shivering and the hypothalumus controls body temp so, although osteopathic treatments for POTS are controversial, I figured they couldn?t hurt. DelphicDragon- I agree with you that when you?re stressed, they are definitely worse ? and trying to prevent them from happening also makes them worse. Best to try and ride them out. I also got them when lying down as well.

I experience this as well. After numerous tests to rule out anything else and chalking this up to another wonderful POTS symptom, my eye doc suggested getting an inexpensive pair of glasses with a small magnification (+1) to help at times like these. Most times, they?ve been very helpful and I can continue reading, being on the computer, etc. Other times, if my vision is really fuzzy and the glasses are not helping, I know I?ve probably just tried to do too much and end up listening to music or an audio book, chatting with a friend on the phone, anything I can do with eyes rested or closed.

I've gotten the bandanas on the coolbandanas.com site that was previsouly mentioned. They also carry them at most of the local sporting goods shops in my area - also have bandanas that you can unroll and put over your shoulders - and head/wrist bands too.

Yes, you might have to travel to find a doc who is knowledgable about dysautonomia/POTS. Before I found one, docs had given me their three-step plan which was 1.) salt/water, then 2.) Florinef (steroid), then 3.) pacemaker. Not that that?s the end of the world but I wanted to exhaust every other possibility. After several scary months of waiting to see a POTS specialist, on my first visit he tells me that in most cases that a pacemaker will actually do more harm than good. With POTS, it?s the CNS (central nervous system) that?s out of whack ? not the heart. Your CNS is still going to ?malfunction? but with the pacemaker your heart cannot speed up/slow down to adjust and it just causes more problems. Ask if anyone sees a good doc in the AZ area (no docs currently listed on the Physician?s List here). There?s another good forum on ndrf.org ? maybe some recommendations there as well.

My POTS doc explained his MVP/no MVP correlation with low blood volume with the analogy that regular people are like water balloons that are 100% full. With POTS, I?m maybe 80% full. Stand a regular water balloon up on end and they?re fine. Stand up my 80%-full water balloon on end and all the water goes to the bottom ? none on the top ? the water (blood) is pooling in my lower extremities and I?m getting symptomatic (brain fog, dizzy, tachy, low BP, whatever the symptom du jour). If he?s listening to my heart at this point, you can definitely hear the click/murmur. Now lay the 80%-filled water balloon down flat and water (blood) spreads out from head to toe. Lay down to have my echo done at this time and ? guess what ? no MVP seen/heard ? and symptoms start to ease or disappear. Very weird.

I?m not sure I really understand this thoroughly myself but I was dx?d with mild MVP as a teen and throughout my life it has come and gone ? sometimes docs could here it, other times not and sometimes it showed up on echo and other times not. I know that sometimes the echoes can be open to interpretation by the doc but couldn?t understand how this appeared to come and go throughout my life. I never had any problems so really thought about it. Then in 2006 (at 45), seemingly out of the blue, I developed and was dx?d with POTS. My POTS specialist believes that, depending on blood volume, MVP will either show up or not. He believes there is actually no physical abnormality in most POTS patients, but that when blood volume is low, the valve appears to prolapse. He?s even done a little demo for me where I/he can hear the click/murmur when I?m feeling bad and haven?t had enough salt/water (but I don?t feel dehydrated??) and it disappears when I?m feeling good . . . or even sometimes it will appear/disappear when I change position from standing to lying. Very interesting.

Richard ? Sorry, posted this response to a different person's question yesterday - talk about brain fog. Anyway . . . Sorry to hear you?ve been going thru this. I have most of the same symptoms you describe. I was dx?d with POTS a year and a half ago after I failed a TTT (after having all the tests you mention turn out fine). I was terrified to have this done for the same reasons you mention. One of my docs even said he knew what the results were going to be before they administered the test. Good news was that my HR shot way up right away w/o being injected ? if you can call that good news. Unfortunately, the doc who dx?d me with POTS had only ever treated one patient with it and I didn?t feel comfortable with this. I bounced around to a number of docs before getting an appointment with one of the specialists listed on the Physicians List on this site. I usually brought them this article by Blair Grubb who is one of the leading authorities on POTS - http://www.medscape.com/viewarticle/522421_print You may want to do a search on MVPS (mitral valve prolapse syndrome). I have MVP too and at first thought it might be MVPS. Actually, my POTS doc thinks this is all connected. Hope you find out some answers soon. Hang in there.

Richard ? Sorry to hear you?ve been going thru this. I have most of the same symptoms you describe. I was dx?d with POTS a year and a half ago after I failed a TTT (after having all the tests you mention turn out fine). I was terrified to have this done for the same reasons you mention. One of my docs even said he knew what the results were going to be before they administered the test. Good news was that my HR shot way up right away w/o being injected ? if you can call that good news. Unfortunately, the doc who dx?d me with POTS had only ever treated one patient with it and I didn?t feel comfortable with this. I bounced around to a number of docs before getting an appointment with one of the specialists listed on the Physicians List on this site. I usually brought them this article by Blair Grubb who is one of the leading authorities on POTS - http://www.medscape.com/viewarticle/522421_print You may want to do a search on MVPS (mitral valve prolapse syndrome). I have MVP too and at first thought it might be MVPS. Actually, my POTS doc thinks this is all connected. Hope you find out some answers soon. Hang in there.

Sara, is there any way you can go back part-time and work your way up to a full day? When I first went back, I too was overwhelmed with fatigue and numerous symptoms and questioned how I would get thru the day let alone a whole week of work plus commute. I used my vacation and sick days and worked part time for a few weeks till my body slowly got used to it and then I started working full-time. Again, several weeks/months for my body to get used to a full-day schedule. It?s really hard to come to terms with the fact that this is my new ?normal? ? having a life very different from the one I had pre-POTS. Some days are better than others. I hope that things work out for you ? no matter what decision you make.

And how about the brain fog kicking in??? I can?t even think straight in this heat. I feel like I?m walking around drunk all day. Since this heatwave started in the NE on Saturday, I haven?t felt right. In the past, if the intense heat came on more slowly (July, August) I think my body had more of a chance to get used to it and symptoms weren?t so bad. But going from 79 to 99 with 100% humidity in one day ? I?m wiped out. Try to keep cool everyone!