yogini

Whenever I have tried the elliptical, my HR goes way up. I can only last about 5 min before I start to get a strange dull headache. The headache may last or go away but then come back a few hrs later or the next morning along witht tachycardia, fatigue and nausea. Since other forms of exercise work for me without any recovery time elliptical is not worth it for me. On the recumbent bike I get the same thing sometimes. It never happens when I am wearing compression hose. So I am pretty sure my body can't maintain enough BP when I exercise upright. If I avoid this I can exercise

Starting a new job is rough. My healthy friends who have gone from unemployment back to work have said the adjustment is exhausting - so imagine how much harder it is on us POTSies! I worked at home for 2.5 yrs and when I started an office job a year ago (fewer hrs than my home job) I was wiped for at least a month. I couldn't exercise for probably 2 months. About 6 months into the job I increased my Paxil and that helped. At that time when I had to increase my medicine it was incredibly discouraging. The good news is that now my body has adjusted and I CAN exercise or do social things after work. I would say take it easy and allow yourself to ease into it. I can't run at all (cardio in an upright position) or do anything in the morning before work. On days when I exerise, I come home and crash! Feel better soon

I get the delay too. I wake up the next morning and I feel awful. This used to happen when I traveled too - I made it OK through the trip and then a day or two later I got horrible symptoms: fatique, migranes and tachycardia.. I have improved over time and so it doesn't really hapen after travel anymore, but I still get it after cardio sometimes. The way that I conquered the exercise is to take baby steps. I did stretching exercises laying on the ground for 5 mins. That didn't trigger anything so I slowly increased over time and gradually worked my way up to doing a recumbent bike. I monitor my HR on the bike and don't go anywhere near my capacity. I wear compression hose and make sure to drink plenty of water, warm up and cool down. I can work full time but I still can't do cardio upright - like the elliptical which I used to do almost every day before I got POTS. I think my body is just not meant to do it and I can live with that.

YES. I sometimes feel this way on Sat morning after a week of work. I usually just sleep it off, drink lots of fluids and a little caffeine and I am usually better by night. I have never seen anyone describe it here before. I am not pale, just stagnant/dull and lethargic. I do not have the energy to shake it out. After work too - sometimes I feel like I don't want to move an inch

I think you're right - most neuros (other than autonomic specialists) don't know much about POTS. And there probably arent too many drs around that see POTS patients every day other than Dr Grubb, Low, etc. On the other hand if the receptionist is saying so, there is at least some hope. How did you find out about this Dr? There is a DINET dr list which you could check, or check the forum to see if anyone else here knows her

I wouldn't assume that you aren't getting enough blood to your brain unless a dr tells you so. Like another poster said, usually the body fights to get enough blood to the brain. The result of lack of blood flow to other parts of the body are the crazy symptoms we have: dizziness, digestion issues, nausea, insomnia, fatigue, etc. In terms of forgetfulness, etc, that happened to me more when my POTS was worse (and happens again during my flare ups). On most days I am back to my pre-POTS cognitive function. To date, there isn't any research that that shows POTS causes lasting damage. There are in fact many people here who were very sick/bedridden at one time that are recovered.

I believe in the past few years the FDA has ruled that EPO is no longer supposed to be prescribed except for very serious cancer patients, due to dangerous side effects.

Thanks for the suggestion. I went to a lingerie store and got this waist cincher. It hooks in the front and is super tight and supportive and supposedly seamless - way tighter than any compression hose, spanx, etc. The sweet elderly man who owns the store said he has spent 30 years making patters for girdles and new my size and what I needed just by looking at me. I thought it would be cheaper on the internet, but I only paid $60. Haven't had the guts or the time to wear it yet - it takes a lot of effort to get into. Will report back when I do! http://www.classicshapewear.com/vedette-renee-firm-compression-waist-cincher-corset-100-150-p-1889.html?gclid=CLryot_5rrICFYSo4AodvnIA0g

Sometimes I do start to feel sick just from rolling over - that is on my worst days. Usually, it's just an increase in HR. I actually don't even measure my HR anymore, but I wore an Polar monitor every day for a couple of years and had this symptom. It is a very scary thing to notice

Just saw flying squirrels response and it sounds right!

II get that from rolling over in bed, swallowing and other basic things. Mine is IST - inappropriate sinus tachycardia excessive increas in HR with movement. Not sure it's vasovagal, though it is autonomic. 10 bpm sounds minor especially if it comes back down when you exhale. Mine is more like 30 bpm, but since it settles back down I was told not to be concerned.

Dizziness used to be my wost Syptom and there are definitely different types. Mostly i felt like i was floating or walking on a rowboat. Do you have spinning? That is the one type that may not be POTS. That is more likely to be an inner ear issue.

I don't have any of the diagnoses (I have never looked for them), but my head juts forward too. It used to be much worse, but I have improved it through years of yoga and exercises to strengthen my shoulders and abs - don't get me wrong, it is still pretty bad. I am sure it is somehow related/contributing to my POTS. No answers, just a me too.

Thanks so much. The third one is what I was imagining. I went to a big dept store and tried on a few in that style and felt that they weren't tight enough, or maybe they just didn't fit me. My size is weird though. I am bigger in the stomach/chest, so nothing ever fits me right. Maybe the 2nd works better. It looks more functional and not so fashionable.I would really love to try something on before I buy. And yes, i wouldn't mind feeling fuller faster !!!

I know many of you wear compression around your stomach. I have reflux which worsens when I wear something tight around my stomach. At the same time, my stomach sticks out a lot and I'm sure I pool in my abdomen. I am otherwise petite except my gut sticks out - it looks a little like I am pregnant, I am sometimes asked if I am pregnant, which is annyoning! I feel better when I draw in my abs and sit up straight, but as soon as I stop focusing on it I slouch back down. I am hoping some kind of compression will help with this, and that I start to wear it for a little while and work my way up to longer periods. So I want to try abdominal compression. I do have some Spanx type shapewear (both the shorts and the tank top). They are a little slimming, but not sure they're firm enough to help with my pooling. I was wondering what any of you use for abdominal compression. Do any of you have one that is custom made? Ideally I'd like somthing that wraps around, so I can take it off quickly if it starts bothering me.

Many people with POTS have EDS, which could cause popping, pain, etc. I don't have EDS. I'm guessing there is more than one mechanism.

Yes get popping sounds all the time. There is a specific part of my neck that hurts right where my head juts forward. I was looking at a diagram of the neck the other day - and lo and behold - that's where the vagus nerve is. Can't help but think it is related.

It is worth mentioning to your dr as we are all different. Many of us here have irregular heartbeats and have told they are normal (even healthy people have them). Also, I don't think cuff BP monitors are usually ECG accurate for HR. i have an Omron and i know it has been off sometimes - both with HR and BP. The Polar HR monitors are ECG accurate, but electrical signals can interfere with measurement. So there is a chance it is a measurement problem and not an actual issue with your HR.

I think pupils dilate when not enough blood is getting o the brain, making us more sensitive to light

I think the symptoms/feeling is vey similar to POTS. That being said, we are all over the place. I think it depends on how severe his OH is.

That is amazing, and a great story for those looking for hope. Getting on the right medication can make a huge difference. I don't know many people that can run after an outing like that. So happy for you!

My favorite is Klorane, but it's expensive. I switch between that and the one you get in the drugstore Psst, I think. It works well too. The dry shampoo makes a big difference.

Just skin for me

In my mind the orthostatic test is really the right test, since it is what happens in real life. The tilt test seems artificial. But either one should be good enough to diagnose.

For yrs I didn't bathe in the am. Try dry shampoo. It makes your hair fuller and smell fresh. You can go 2-3 days without washing