ddschool

I understand how you feel! I'm 35, have a pacemaker, and have to wear compression stockings too! I feel twice my age! I even get emails for assisted living, AARP, etc! I have a Rx for Mediven Medisilk compression stockings 20-30mmHg, knee high, closed & open toe (I have about 7 pairs now! Insurance will cover w/ Rx if you go to home med supply store-they should file it for you). I usually wear capris & Birkenstocks so it doesn't look so obvious, but I know what you mean, wearing them in the hot weather makes you feel worse. I hope this helps!

Thank you all for your responses. I'm so glad I'm not alone! I felt like I was the only one going to all of these docs & none of them taking me seriously, or b/c they don't know what to do w/ me, they pawn me off on another doc-now I know it's not just me! I'm a nurse, and for the life of me, I can not understand why these docs will let someone go around w/ a fever for this long. I have showed my frustration at them, and they still refuse to try any antibiotics or antivirals. I've worked in hospitals, and hosp doc would not let this fly-they would get to the bottom of it, or at least try to treat it. I don't know why b/c I'm outpatient it's ok. Thanks again everyone for listening!

I've had a low grade fever (99.4-100.5) & night sweats for over 6 months, and no docs can find what is wrong with me (no cancer, no infection, all labs normal). Tylenol & Ibuprofen don't seem to affect it at all. Any ideas, suggestions, etc? Thanks in advance!

Fatigue/weakness are my worst symptoms too. I've been getting acupuncture, & it helps some-it gives me 1 or 2 good days that I didn't have before. Also, protein shakes like Muscle Milk help a little. And, pacing my activities (not doing everything on a day when I feel good or I'll pay for it the next day).

I received a pacemaker almost 2 years ago. I got it b/c my bp meds would kick in my vagal nerve & lower my hr even lower than it already was (40-50s). At first, I had a hard time sleeping b/c my body wasn't used to the higher hr. The pm has helped my hr, but not my bp, fatigue/weakness, etc. I thought getting a pm would drastically improve my condition, & it didn't. I'm not saying I wish I didn't get it, but I don' t feel like I thought I would.

I can sympathize. I was functioning ok w/ my dysautonomia until last Sept when I started having severe chest pain & low grade fevers. I feel like any "normal" function that I had was gone, & my fatigue was worse. Recently, I found out that I Coxsackie B virus & Echovirus.

Just curious if anyone out there is a patient or participating in a Vanderbilt Univ. research study for POTS, dysautonomia, etc? Thanks in advance for any info!

Sounds worth trying. When I'm at the beach (3hrs from my house), I do feel better( less lightheaded episodes, don't have to wear my compression stockings, etc). I really believe, as Michael J Fox found out in the Himalayas, barometric pressure really affects us.

I also got a wedge pillow rather than raising the bed. I guess it helps some,but not the huge amount like the docs said it would.

Has anyone had Coxsackie B virus &/or Echovirus? If so, what were your symptoms, and how did you deal with/treat it? Thanks for any input!

I wanted to write about something I decided to try last week, and it seems to be helping so far. I am realizing the docs don't know what to do for me anymore, so I decided to try alternative medicine therapies. Last week I started acupuncture. I get it done through a chiropractors' office. She told me it would take 6 sessions to notice a change, but I noticed I felt better and had more energy the next day. She said it obviously wouldn't be a cure, but it sure has helped. I feel more focused, have more energy, and that I can get more tasks done. I don't know if it would be work for everyone, but it is worth a shot.

I can only I take 2.5mg three times a day - when I tried taking higher doses, it lowered my HR even more (vagal nerve response) ....

I've already gotten some of my results/rhythm strips (I asked the doctors office to fax me some of them) - my HR ranged from 39-116 on the recordings - I have never fainted, but I always feel lightheaded, nauseous, etc. when my BP drops - I can tell when my HR is low b/c I feel weak & tired, or when it is high, I have strong palpitations - atleast the monitor supports those findings now, and I can see what is happening .... In a way, the monitor was an inconvience, but not that I don't have it, I feel strange and like my "security blanket" is gone ....

My doc is talking about a pacemaker b/c my heart rate is low (along w/ my BP) - when I take my meds to raise my BP, my vagal nerve kicks in, and lowers my HR even more - he is at a loss on what to do anymore b/c I can't tolerate higher doses of meds, and I have tried just about everything - at this point, I welcome a pacemaker if it will make me human again ....

I've been wearing an external loop recorder for a month now (today is my last day! can't wait to get rid of it!) It has been a pain downloading it all the time and it auto-recording, but I do feel a little reassured having the "data" to support my symptoms and low heart rates-may be now I can get somewhere w/ a treatment ....

Has anyone been prescribed Scopolamine Patches (motion sickness patch for behind the ear) to help w/ POTS treatment? If so, did you have any side effects? Thank you in advance for any responses!

I wanted to get some opinions from other people here that live other places .... I live in South Carolina, and I felt pretty decent for a month or so (to the point I thought I might be getting better) - The weather was cooler (30s-50s) during this time - Then, the past week, our temps climbed into the 80s, and I noticed worsening symptoms again - I am wondering if anyone else has noticed this correlation, or if it is a fluke thing w/ me? Thank you ahead of time for any help!

There is a doc at UNC-Chapel Hill by the name if Dr. Caroline Klein-She specializes in the neurological part of POTS ....

Just wondering if anyone else out there is having trouble when they get an abrasion or cut not healing? I notice even if I put Neosporin on the smallest little cut, it almost makes it worse - I am wondering if it is me, of something related to the POTS?

I had a tilt table (this is what you are describing) done at Duke - I found my test done there was more accurate than the one I had in Charlotte - the one on Charlotte, they just gave me Nitroglycerin to induce symptoms - At Duke, I had an Arterial Line, multiple lab draws, and he put me through multiple tasks/drugs to induce symptoms (hand in ice, counting backwards from 100 by 7, giving me IV Isuprel, etc.) - Through the Arterial Line, they could monitor my BP while lying and standing, but could also draw labwork at certain time intervals. This was how was I was finally confirmed w/ POTS.

Kexia, I feel your pain! For a long time, docs didn't take me seriously about how I feel and my symptoms (like I can make up a low BP or low HR?!) THEN, they would give me my test results and I would catch them lying to me! (I am a nurse and I get copies of all my tests/reports) - It is so frustrating and disheartening .... I work evening shift, I told my doc that I had to drink a Pepsi at 9pm just so I could drive home at 11pm - He thought I was joking at first, and I told him I wasn't - I had to do what I had to do to make it home after working 12 hours - He told me that I might need to take a 4th, smaller dose of my Midodrine, or look at changing my Concerta to Ritalin (which we didn't) ..... Keep your chin up, stick to your guns, don't let anyone run over you b/c I have learned if you don't stick for yourself, no one else will - Like everyone else said, you know your body better than anyone else .... Good luck ....

I have this movement and sinking feeling too - I then check my BP & HR, and usually it is low ....

Recently, I've ordered some from Bright Life Direct - I got Allgrio brand (I think) knee highs, the stay up, and are comfortable .... I am 5'9" so I understand about finding things tall enough ....

I just found mold in my closet (if faces an outside wall of the house-our house is 50+ yrs old w/ wood siding) - I have been wondering if my POTS symptoms were from the mold b/c I don't know how long it's been there (it was clothes I haven't worn in a long time, so that is why I didn't notice) - My husband keeps insisting the way I feel is not related to the mold, and then I think, wouldn't he be sick too if I were sick from the mold?

Happening to me too, gradually getting worse over the past 6 months - I used to have no trouble falling asleep, and staying asleep 8+ hrs - now, if I get 1 or 2 nights of good sleep a week, I am doing well - it is so frustrating - I am trying to avoid getting a prescription for a sleep med, but I feel like I am groggy and cranky all of the time ....