Roy

I have the worst time falling asleep. If I don't take anything I won't fall asleep until around 3 am. and then get up around 11 am feeling like I have been run over by a truck. I took Ativan for several months, but it started working less and being less effective at even at higher doses. Last night was my 4th night on Ambien. It seems to work well and I have been getting to sleep by 12 at the latest and outta bed by 8am which is something I haven't seen in alooong time.

I lost around 30 pounds within the first 5 months of my POTS starting. I was 175 and 6' 2" and my weight fell to 145 at its lowest. I gained back 15 pounds over 9 months then lost all that in 6 weeks becuse of the IBS/diarrhea the zoloft gave me. I'm off the zoloft and up to 160 now. My doctors always tell me that I'm 20 pounds under wieght and should really do something about it. lol! If it were that simple I would have already done it. In the end I have always been on the thin side and it looks like things won't be changing.

wow! it looks like just about everyone gets this. in the morning when i wake up my heart is a bit tachy around 110. if i roll over or stretch my arms and legs my heart jumps up 20-30 bpm. it generally goes away after i become fully awake. when i was in the hospital with pots before they new what i was and i wasn't even on meds yet. i had the same problems as JacobyD. if i reached for my water or moved around slightly my heart rate would jump 40-50 beats a minute. so hang in there your not alone.

does anyone get collapsing veins? never use to get this until i developed pots. if i flex my bicep instead of the veins bulging out like the use to they indent all over. they do this if i raise my hands straight in the air too. i showed my doctor this and he said it was normal. I don't think so. when i do leg raises while lying on my back all the veins in my feet collapse and my feet and toes go white. then they go back to normal as soon as i lower my legs. my feet also go redish purple when i stand or shower. i think some of it has to do with the fact that most of us aren't as active as we use to be. when i use to be able to weight lift i had alot more musle bulk and my limbs were very vascular. a year and a half with no gym has left my muscles thin, weak and indented veins.

I get this feeling too, a couple a times a week. It will feel like the chair I'm sitting in is tipping over and I always hurry to grab the arms before I fall over or I'll be lying in bed and it feels like someone just lefted up the side of the bed to roll me out. I also get it standing in line which is the worst. On bad days if I'm driving and at a stop it still feels like the car is still moving. I have to push down hard on the brake to make sure I'm not rolling. I haven't really found anything that gets rid of them. I think it's just another annoying symtpon to deal with.

I don't think that I am having GI track problems. When I first started developing POTS after a viral infection this symptom that I am having was one of my chief complaints besides the tachycardia. I get this sensation if I eat or don't. It doesn't seem to get worse after eating and it doesn't get better if I go all day without eating. I haven't had any IBS problems in nearly 4 months and when I did this symptom wasn't any worse. Over the last year I must have had 3 cat scans and everything was normal. No swelling anywhere. Oh well, just one of those things you have to learn to live with.

I get this symptom when standing and walking. As I'm standing up I get a tightening and heavy sensation in my diaphragm. It impairs my breathing some what. I can't really take in a full deep breath becuase of the tightness and there is no weezing with this problem. As long as I walk and stand I have it, but soon as I sit it goes away totally. Some days the tightness isn't noticable others it bothers me the entire time I'm on my feet. And other days the sensation fades away after being up for a few minutes. I have told various doctors about this over the last 2 yrs that I have had POTS. With not much more reaching then a raised eyebrow and a hmmm. My neurologist finally said that I could be having some type of spasms causing my diapragm to tighten. Thats pretty much what I told her! She dismissed it as being unimportant and told me to do yoga and meditation to calm my nerves and strengthen my diapragm. I told this to another doctor a couple of years ago when my POTS started and he said it could be blood pooling in that area. This problem isn't getting worse and it isn't going away. Just real bothersome on top of all the stuff. I was just curious if anybody else has to deal with this. Does anbody else have this particular problem, any insights or ideas????

I'm curious if anyone else has this. In the past I haden't monitored my BP as much as I do now that I have been taking Proamatine. I take my BP 4 times daily. In the mornings and evenings before and after meds. Laying down, sitting up and standing up. On some of my standing up readings before meds have been like this: 101/90 or 97/90. After meds it ends up looking like this 108-115/60's - 80. I was wondering if the diastolic is to high or dangerous? Now that I have had a few readings like this I am getting concerned. I will ask my doctor about it on monday. Since my doctor is by no means a POTS specialist. I wanted to see if this was common or not.

The best thing to do would be to get a Lasik screening. They are free in most clinics and they have you fill out alot of paper work concering current health conditions. I remember one of the questions being about heart problems. I answered no. At the time I didn't have POTS, but they still asked if I had any problems with hypertension or any other heart problems and even asked if any of my relatives did. The docs and assistants at the clininc I went to were very professional and thorough. I ended up not qualyifing for the procedure because my corneas were borderline too thin. As far as anesthetics go I know that they wanted someone to drive me home (if I had the procedure) becuase they give the patients valium to sedate them.

Hi Jessica, Sorry to hear about your problem. I haven't had any insurance in 2 years and I really haven't been able to find any type of government help. One thing that can help is to tell the doctor/s you see that you don't have insurance and explain what kind of situation your in. They will usually reduce their fees and give you free meds if they can. I saw a neurologist recently who asked me how I have been paying for all this. After explainig to her what I have been going thru she waved her personal fee of $120 and only charged me $100 for the hospitals portion. My asthma speacilist waves $50 of his fee now and gives me free meds any time I call in for them. Which saves me over $200 a month! I tried to get free Proamatine from my cardiologist, but they never have any. I hope this helps you out at least little bit.

My legs fell heavy, numb and achy in the afternoons when I tend to feel my worst. It gets even worse if I eat large meals.

I had some awful trobles swallowing when my POTS started out, but it has mostly gone away over the last couple of years. I notice it gets worse if I let myself get dehydrated.

I have the same problems. Some days when I wake up my heart rate is a little high. In the upper 90's which feels tachy to me. If I stand up my HR will shoot up to the 140-150's. I like to stay in bed until my meds kick in.

Yes, this is common. I have to eat smaller meals during the day to avoid this. If I do eat a large meal I become very tired and lethargic. Also, avoid sugar. I saw a specialist for POTS recently and the first thing about diet was small meals and no sugar. The other day I decided to ingnore this and had an apple juice and I felt awful the rest of the afternnon and evening.

I tried paxil for a couple of weeks. I didn't like it at all. If it didn't make me tired I was over stimulated. It seemed to make me more nervous and edgy. I also had the bugs under the scalp feeling. lol I then tried zoloft which was a total disaster.

I was on 180mg of cardizem a calcium channel blocker which didn't help at all so they raised it to 240mg. It still didn't help and I was a total zombie. Memory blanks, lethargy, visual problems I was a real mess. Happy to be off the the stuff.

Can anyone recommend a good Canadian pharmacy for Proamatine? I don't know if this topic can be discussed here or not. If not I will delete. My doctor just put me on this drug and it seems to be helping better than other drugs, but its rather expensive and I don't have insurance. At $165 per month I don't know which is making me sicker, the drugs or the POTS.