hi-
I am new here. I am looking for hope. Do people really recover from this? How long does it take? Before all this I did have EDS, Raynaud's and IBS. I am not sure how bad I have Pots. I think I started getting Pots on Jan. 31st. my face and head swelled, I got a "sinus infection" and everything felt wrong. I was exhausted. I took a week off of work and came back the next week. I felt strange the entire month of Feb. Burned out, exhausted. Position changes were strange. My feet started to hurt, I got this huge bump on my rib and the entire left side of my body cramped up. This has gone away.

i had this thirst that I could not get rid of and I kept thinking I was having edema in my legs, I think that was the pooling of the legs. March 1st I woke up and I felt that Potsy feeling where the room goes upside down. I pushed myself through the next 4 days and March 5th I crashed, I was in a cold sweat. i had drank so much water that I got a low sodium and ended up in the ER. They told me to go home and I'd be fine in 48hrs and when I excercise I should always have Gatorade. So 48hrs later I went back to the gym. ( I used to teach spinning and was/am a huge fitness fan). I finished my workout and everything felt wrong. I drank G2 during the workout and by the time I got home I had hypoglycemia pretty bad. Over the next few days and weeks I had nausea, surges around eating, tightness in my chest, strange vision, abnormal responses to heat, excercise, pain in my arches, numb fingers, higher heart rate and more sweating etc. My face and nose and lip would swell up and I kept getting reactive hypo with real numbers, 48, 50. etc. I saw an Endo and she did a full work up. All was normal. I failed the glucose tolerance test 4 times. I got blood sugars that went anywhere from 30-50 in 1 1/2 hour to 2 1/2hours. I was even fasted 85 hours in the ICU for an Insulinoma. Then one day I was laying in my bed and I had my heart rate monitor on and my heart rate went from 50 laying down to 120 in about 7 seconds then returned to normal beats of 80-90 depending on hydration state. I got a holter montor and did a tilt table test. I almost passed out on it.

Now it is June....I seem to have Pots symptoms when I first get up in the AM. Once I drink a liter of water the heart rate goes down to normal. When I change positions quickly I get a 30-40 beat surge. I get numbing in my feet, finger tips, lips lower legs, pressure around the checks and head, nausea, tightness in chest after lunch, my arches hurt a lot. I can workout out, but if I over do it I end up dead the next day and I get the pain behind my eyes and I feel really tired. I often have strange vision. I am forgetful, I am not sure if it is because I keep thinking about Pots or what.
I have tried beta blockers- not good, so tired on it, loads of edema
Cerefolin-I think I in more of a fog on it.
Midodrine- I was constipated
Mestinon-my muscles ache
What has worked:
Excercise- helps with the fog
lifting the beds head
Sudafed-helps the leg pooling, and keeps you alert
Ambien to keep you asleep
Salt increase and 3- 4 liters of water on the days I workout.
I see Dr. Friday at Stanford..she is very knowledgeable, but I'd love to hear what you have to think about this thing..
Any advice....do you think i will recover? how long? Please give me some thoughts and help.

Yes,
I had them checked. They were normal, the doctor believes it was a viral onset, but that is all she said. It is better than in March/April, but it seems to have slowed down in terms of getting better. Any advice? I hate the numbing of the lips and the feeling my legs are falling down after I workout. I hate feeling like I am so out of it or maybe I am just being hard on myself. Today was a bad day. I over did it the past few days and so I felt the pain behind my eye and I had dizzyness...not sure if the dizziness is related to overdoing it or not. Love some advice...

This message has been edited. Last edited by: spinning,

Greetings,
Who are you seeing at Stanford if I may ask?
I live in Menlo Park, CA.
My story.
I was morbidly obese until 4 months ago. When I was obese I still exercised but if I overdid it I would feel light-headed for two days. On the day of exercising I would not feel light-headed during exercise but definitely after. So much so that I had to sit at times when I usually prefer to stand and talk to clients.

So... I lost 80# intentionally in 6 months. I now have a decent weight. Unfortunately my Sx worsen. Now I can work out and progressively increase resistance over time on the elliptical machine. I feel fine during the workout. But later that morning I feel light-headed, "foggy" minded and tired. I can partially counteract this by drinking 2 liters of water by 0900 AM. (Usual workout time is 0600 AM).
What I discovered by accident: I developed a cold this week and took Actifed Sunday night. Monday I was at my clearest mentally and least fatigued. I'll have to test with myself whether it was the antihistamine or the phenylephrine in the Actifed that made me feel so much better. Am encouraged by my response though. Previous to this week, even on the days when I don't exercise, my light-headedness was gone but mind was not as sharp as it used to be and my energy level was not as hight as it used to be.

I see Karen Friday at Stanford, she seems to know a lot about Pots. I know Dr. Friday mentioned Actifed/Sudafed can help Pots Patients. I take them only when needed because they effect my sleep.

spinning - my docs also think i have the post viral version of pots. and they gave me a 2-5 yr prognosis PLUS the hope that in about 6 months after diagnosis/treatment beginning that i will be mostly functional and will be 'normal' as long as i manage my lifestyle, meds, etc.

that was at the end of may. i've had ups and downs but overall i am definitely improving. while i was exhausted last week and am having issues with my shoulders....i have noticed that i walk more normally and with more 'pep'. i haven't walked 'normal' in months (my symptoms started 2/14/08).

so there is hope. i'm on atenolol for pvc's and vit b12 and vit d for deficiencies. lots of water (tons) and i gave up on the salt tablets - too hard to swallow. for lifestyle management - work on increasing my exercise and restin when i'm tired (find a balance between the two) AND trying to have a healthier diet (while finding what types of foods make me worse).

I lose hope some days on the bad days but i still have hope.

i know i ramble - and i am more forgetful and 'dumb' than i ever used to be. but it has improved also and i'm hoping it keeps improving.

i'm glad to hear you know of a doc at stanford. my youngest daughter lives in the bay area and i suspect she may have similar problems but she won't go to a doc yet. stubborn 19 yr old (LOL).

good luck!!!

Welcome spinning and keep on posting. I find the connection with other people who have dysautonomia to be invaluable. I have learned a lot on this site. And you will find me here when I'm feeling low and need to know I'm not the only one. It helps a great deal.