genie

I have had acupuncture before for back problems and it helped for that. Could feel lots of changes with using it. Hadn't thought about it for POTS but may call my acupuncturist and see what she will say. I'll let you know what I find out, it is very relaxing to me and no side-effects so it's worth a shot!

Me too. I have a hard time getting to sleep, am tired all day and then when it's time for bed wide awake and then wake up several times durring the night. I also wake up tired and never feeling rested?

Hello,

I am running a low grade fever once again, around 99 to 99.5 I do this occassionally and tend to have hot and cold flashes with this. My normal temp is 97.4 which is low. Does anyone else have this problem?

Hello,

I, too, have POTS and still get tremors, hands shaking and insides jumping around. I am on Proamatine and it seems to help most days but I do occasionally still get them Notice that I get the tremors more when I?m stressed or overly tired.

I guess I've described mine as my brain swimming, that's what it feels like to me. I'm not sure what causes it, have had my ears checked too and nothing? The doc just makes notes but since it usually goes away??? If you find out, do let me know

Typically, I find that I stay colder when I?m up and as soon as I lay down I get hot. Guessing this is normal when you have autonomic disorders and do also find that it takes a long time to warm up or cool off as well. Hope this helps.

Hi Meghan,

Yea, POTS changes all our lives and it is difficult watching other go about everyday activities with ease, when we have to have that lunchtime nap I am also on the proamatine and have been for a year and 1/2 and it has helped with my energy level as well. I was finally diagnosed a couple of years ago and was entering a master program. It does zap you being in school and having POTS and for me trying to work as well. You have to find the happy medium and support for it, I have my friends and family that I can call and have a pity party if I need to This forum is great to because it offers great info and connects you with others that know what you are going through. That was a big one for me; my now ex boyfriend and some friends didn't get it and didn't understand why I needed so much rest. You are welcome to email me anytime you want. Good luck with school, it can be done, I just finished my masters in May

I had POTS before the mono, looking back although my diagnosis came after The mono defiantly did make the POTS symptoms a lot worse. There is a link my doctor told me about mono and POTS but with my having had symptoms since I was in 6th grade mine started long before the mono?

I've been on it for a year and a half. Started out taking 2.5 mg 3xday and am now at 5mg 3xday, with the possibility of increasing it again. My doctor has asked that I now take it 30min before I get up in the morning, hoping that it will be in my system before standing thus controlling my symptoms a bit more. Have only been on that for a couple of weeks but I think it is helping. My diagnosis is POTS with syncope. I tried about seven med's before we found this one. The main side effects are some lower leg aching when I rest as well as needles in the scalp feel when I increase and when I started it. I can't remember if there were others

Sure hope this helps but if you have other questions about this drug email me, not sure that I?ll know the answer but will try

Good luck.

Congratulations!! For all of us out there trying to do well in school, it gives us hope!

I know that short term memory loss is related to blood and oxygen loss to the brain, but mine seems to be getting worse even on medications. I am also noticing more verbal slurs? Does anyone have any suggestions or things that have worked for you? Thanks!

My doctor and I are trying me taking the proamatine 30 minutes before I would usually wake up and I've been doing this for 2 weeks and I do think it is helping me. Thought maybe for some of you who have problems with the am might want to disscuss this with your doc, this at least keeps me from bottoming out first thing

Hello,

I have been on Midrodine for a year and 1/2 and my doctor is wanting to add something to it. I am curious to know more about the octreotide if you have any.

Thanks!!