kare

Just 1/2 of 75 mg effexor and 40 mg of stratterra(for ADD), lots of mag,calcium and fluids with salt.............

I have tried florinef- years ago took for several months. Gained 15 pds with it but eventually stopped cause didn't notice any lessoning in fatigue- my main complaint. (oh and brain fog)... But now thinking, well maybe it would have helped if I would have increased salt and potassium- didn't know about that part. Have tried mididrone which gave me amazing 3 weeks of energy, but then stopped helping only made BL pressure go to dangerous levels- like 180/130...... Myabe it would help again,,, My daugther is getting ready to graduate and I am thinkin I would like to have family over, but things are so neglected around here and how could I get energy to makefood, orgainze party etc... but couple weeks of energy would do it.. Have taken concerta 10 mg before and it helps slightly for awhile but then sleep gets really bad and I feel wired. Have only tried beta blockers for couple weeks one time- I was sooooo exhausted so quit- but does side effects get better and after time I would actually find more energy on low dose beta.... hmmmmm I feel bad complaining, because I am not bed, house bound, never faint, never have naseau just irratable bowel and the old famaliar exhaustion, weakness in AM and relentless fatigue. brain fog. My pulse doesn't get very high, usually 115 when standing and resting in 80's.... I do all the Vit, magnesium, bvit each day (but do they really make diff???) Anyway, headed to Dr teusday, haved been for 2 years and he will let me try whatever I want..... Thinking of asking for klonipin or clonidine or provigil or continuous B C pills or....... betablockerrs or......(whixch one should I take atenonol was one I took long ago.... I got POTS with pregnancy, wonder if different types respond to different meds and different types are caused by different situations... never did any testing so don't know if have too much adrenaline or nerve damage or...... Anyway thanks to who ever has time to read wanderings of tired POTS/MVP/ADHD 'er....

Strattterra is new ADHD med that is a non stimulant. It enabled my ADHD tired brain to take 2 classes this last semester. It doesn't take away appetite. Maybe your nephew's mom could ask Dr. for this instead of other.

I did search on this med, but couldn't decide if I wanted to ask for it or not. I wake up most mornings feeling so "hungover".... As most of us do I imagine. Anyway I usually have to take 1/2 tablet of benedry to sleep and I wondered if Klonipin would help me sleep and not make me feel so bad in AM. I have tried low dose trazadone and it makes you feel very hung over in AM. Just wondered how everyone gets to sleep and stays a sleep at nite- thanks!!!

I've had POTS since 2nd pregnancy. (18 years ago) Never had to work until our finances got so bad, now I am taking part time job as "nurses' aide". Very fatigued and weak most days, hard to imagine ever being able to do fulltime job, but I am hoping for the "magic meds".......w e will see how partime job goes..... (I never faint just feel crummy and weak and brain fogged...... sigh.......)

I quess it is high, maybe trying to compensate for the low blood volume but the problem is furthur down the line- body not being able to respond to the high aldosterone - receptors for the aldosterone not receiving signal or something.... hmmmmm interesting but very frustrating this POTS is.......

wHEN I have bad time with nausea I find tagamet taken every 4 hours, double what they say on box (my pharmicist step-daughter says that was the perscription strength) taken for usuallly a week (will go through one box) and then the naseau will go away for long time........ I am sorry--- that is an awful feeling!!!!! Sucking on peppermint seemed to help when I was pregnant--- keeping something going down all the time. I would go to sleep sucking on it......

So Sorry about ablation Morgan, Dr. wanted my mom to have one for her atrial fib... she still might..... I would LOve to hear what Dr. Watkins has to say. I hope you get a good visit and plenty of questions aswered!!! Does he believe that MVP/dysautonomia is same as POTS? MVP sites always say avoid caffeine- which I did for years and just in last few have I found how much coffee HELPS!!! , I guess by constricting blood vessels. And do they ever give Midodrone- which helped me tremendously till my body figured out how to overcome its effects. And why does florinef (with gain of 15 pounds) not help with symptoms if low blood volume is our problem....And what about beta blockers? Sorry, its not MY appointment. I took an adderal today for energy and my brain is going high speed still......Sorry...... Please report on your appointment. I have always wanted to go to MVP treatment center. Seriously, would you mind asking him one question for me----- does he think that there might be improvement, possibly after menopause?????????????? I am 47 this summer and would so love to think that someday I could participate in living life without constant brain fog and fatigue........... THANKS!

I'd suggest you get her a digital recorder so that she can listen to the lectures when she feels the best. Sometimes- especially my 9:00 AM lab and even my 10 AM lecture--- I am "there", but not really "there"...... I will listen to the lecture later and wonder- how did I miss ALL that... (mornings are my worst). I have headphones and walk around campus or lay in bed at nite and listen again to the lectures. Walmart has them for $29. The digital ones hold 6 hours of lecture and I actually have 2 so I can go over lectures before test. -- they are very small and fit in pocket. Also get rechargable batteries and battery charge- so much cheaper in long run!!

My POTS/MVP "syndrome" or whatever happened during or after 2 nd pregnancy. Could have been during , but was too naseauted to notice exhaustion, fast pulse- I am one of those who throw up the whole nine months unless I ate non stop- small meals, even sandwiches under bed at nite to keep from having to vomit. (even taking phenergan) Gained 50 pounds last 3 pregnancies, but that was better than first preg when had to be hospitalized cause had lost 15 and was dehydrated from vomiting 10 plus times a day.... sorry, I am off the subject, my adhd kicking in big time...... Anyway, have lived with this exhaustion, high pulse(when standing), low blood pressure for 18 years. There is no way I could have worked full time job, trying to see if I can handle parttime this summer. I never pass out, just have to sit down when I feel weak dizzy. My brain fog is pretty bad cause of tiredness, mornings are worst.... Maybe it will go away, maybe not.......

Karen, do you mind me asking what meds help you and how did your dys start? thanks

Could it be the lexapro bringing on the nausea? I know if I don't take my effexor with plenty of protein and carbs I will get very sick and stay like that... Also, my sisterinlaw takes lexapro and she says that it makes her sleepy so her dr. told her to take it right before bed and works fine that way.. God bless! Karen

I called an old friend that has had similiar symptoms for years(I hadn't talked to her in a long time she has the high pulse/MVP diagnosis, trouble sleeping, exhaustion and she said ..... Yes, her symptoms HAVE been better last few years. She is 57 now and said that there has been a definite decrease in her symptoms(and more energy and less brain fog). She said she can't remember the last time she woke up exhausted and that made me feel good because mornings are soooo hard. I quess since there are different things that cause our autonomic problems, then different people will get better with estrogen out of system, or blood vessels less floppy or.... I have had so many many exhausted years, I am so hoping that things will improve........ maybe, maybe...... I quess we all just have to keep hoping for our "miracle" ... but meantime enjoy life as much as we can in the" tired" lane.....

I was reading past posts and noticed that Karyn (who is a neurologist, glad you are here with your medical insights but sorry you are sick...) commented that a Dr. told her that POTS would get better when you reach the age of 50 because of natural hardening of the blood vessels...... I have had POTS since 2nd pregnancy 18 years ago and am now 46....I am wondering if Life will improve in a few years..... Got soooooo excited this AM reading that....... if not many peoplerespond that are older that will be a good sign--- means they have out grown the need for support because they are better???? My main complaint is of course, the relentless exhaustion, day after day after day......

I have gone as long as 1 year with no sugar- and didn't feel any better. I did the whole antiyeast thing- lots of money spent...... but no decrease in POT symptoms..... actually I think a chocolate gives me energy!!