erikainorlando

.... although I tend to disagree, especially with the fact that the blood vessels in my legs and thighs have been known to burst unexpectedly... and if those vessels are affected by this, it stands to reason that the rest are affected as well. Sorry...I get lost here sometimes. Do bursting blood vessels in our legs have an association with POTS? Thanks, Erika

Truely...I spoke with a woman last year before my diagnosis...she said it depends on when you are being tested (ANCA). She mentioned that hers was always negative as well. Finally when she completely collapsed they did a lung biopsy...and found Wegeners. She said it is still negative at times...depends if she is in a flare or not. I am no doctor..for sure. But, keep asking. There is a foundation for Wegeners. They have tons of information. Keep us posted. Good luck. Erika

Good luck and keep us posted. I am waiting for the to re-open my case...they didn't get my docs notes on time and closed the case!! So frustrating...

Is Dr. Grubb better to see than the folks at Vanderbilt? How do they figure what type of POTS one has...no one has mentioned anythin like this to me. Why does it matter....are the treatments taylored to each type? If I got it after a virus what type would that indicate?? Thanks so much!!! ANy info is so helpful. Erika

I have terrible terrible chest pain when I have been updright too long. It has gotten a little better on toprol xl. I was taking the generic before and my chest pain was very bad.....it is better than before but still no fun...part of POTS for me. Erika

From what I have read...the PANCA and CANCA can be negative and you can still have Wegeners... I was convinced that I had it as my chest hurt so bad and couldn't breathe and my nose was running...and I got it after a sinus infection. But alas...it is only POTS.which I am truely grateful of. Why does he think it is Wegeners? There is a support site you can runyour blood work by...my red blood count was getting low or high can't remember...but it was really from just being so sick with POTS before beta blockers and mega amounts of rest. Feel free to PM me...I went down this road for myself. Erika

Florinef and I don't mix well. I get very bad headaches....so I just stay with the beta blockers and antidepressent treatment.

Yes....definately...just like the flu. When I have been moving too much my throat gets sore and voice gets hoarse, and my nose runs. My ENT said it was from the changes in the blood vessels. My body aches frequently and I feel like I am pushing a 50 lb weight around. I have not even had a cold since I got POTS. I think my immune system has just way too overamped. Erika

Thanks all! Yes...it is probabl more common than we think but I am always taken back when I hear about those with POTS who can ignore symptoms...I kept collapsing.....compelety impacted my life...made me "stand up and take notice"........ha ha Perhpas because the onset post-viral seems so sudden.

Still waiting...today the girl atdisability claims said she needed a formal appeal from me. Now also they need to speak with the doctor..theyy keep adding stuff on..please keep praying. You all know if I could work I really would.. Thanks guys..................

I found a site called NORD that is a foundation for rare diseases. Is POTS considered a rare disease? Does anyone know? Thanks guys...Erika

Did you have a virus before you started experiencing all these symptoms? I don't have eds...I had a virus before getting POTS...some autoimmune dysfunction and many of us have an onset after an illness.

I explain it like this: Normal people do exercise and over a few days start "building" muscle and get stronger. People with dysautonomia do exercise and over a few days have "spent" all the energy in their muscles and get weaker. We must stop and rest and recharge to build up more energy to then do more activity. We do not store or build long term strength in our muscles. TeaRose: that is exactly what happens...I can do for a little w hile then I get weak....really weak...can't even lift a fork weak...but if i rest I can get it back...but my cup gets real empt real fast!

Thanks all! Your support is so wonderful!! It is long-term disability through my job. My doctors office has already called the 20 year old girl who closed the case and she is speaking with her manager and will get back to me. No word yet... I am calmed down today but it is difficult as everything is such an effort...I just get too tired to fight sometimes...I would love to work.. I will get a lawyer if they don't reopen it .... it blows my mind if that they can close it with the dropo of a hat...without a thought how they might be impacting the life of someone who is comprised to begin with.............. Still praying in Orlando!! Erika

Incredible exercise intolerance over here. I can get sick from anything...sometimes drying my hair can make me very ill. I keep trying tho...I chalk it up to POTS....

Many many clueless physcians out there. The best we can hope for sometimes is if thye don't know to refer us out...my neurologist is insisting on Mayo for me.... It is so frustrating...I have gotten more attention from physicains from having the flu...I was laughing with my neuro and said "next time i want to get something that can be fixed and that people know somthing about!"...I love that man...he has always been in my corner. He really didn't know what was wrong after I got a virus last year but he at least believed that something was majorly wrong! SEVERAL months later a good EP did a TTT and figured it out. Anyway...don't let them blow you off! Keep going until you find someone who will help you! Try not to get discouraged. It is difficult to feel so awful EVERYDAY and not given any real crediance to our symptoms. Hang in there..Erika

Hanging in there in Orlando! Still a bit freaked but I am making the calls necesssary to try to get reinstated. No word yet...on a positive note I had one girl friend drop by $100...I was both mortified and deeply touched! We are financially strapped but I don't need to start borrowing $$ quite yet. Thank you for all your support...Erika

Well, today I was already feeling overwhelmed...my son has had some problems in school and financially we are strapped...bla bla bla. So I get the mail and now they have closed my disability case...they said the doctor didn't comment on my status so they closed the case. The fact is that the doctor's assistant said she couldn't comment or release me and I would have to be evaluated by the doctor at the next visit. This just iht me like a ton of bricks. I started crying and crying. I hate being broke. I hate struggling. I hate being sick. But mostly i hate having to prove I am sick. It feels hard lately. Believe me if I was well enough to work I would be doing it!! I would love to work...I hate sitting on the couch day after day. I told one of my ffriends and she basically said "we all have problems"...I wanted to hit her as she walked off in her high heels after her active 12 hour day. I need to pray pray pray that God helps me get reinstated on that disability insurance. We barely make it on that and I can't even imagine trying to work......................just looking for support and good thoughts...and prayers that I get put back on. Thanks... Erika

Welcome. I relate....altho I have POTS and had onset after a virus. I am breathless a lot, beta blockers help me quite a bit but I have had to learn to modify my life. I have to go much slower and plan on several hours of laying down and not feeling well at all in the afternoon. I drink a lot of liquids and eat a lot of salt. But so much of it has just been accepting the illness and learning how to cope. I hope that doesn't sound too depressing. You will find a lot of support here on the board and tons of information. I find that informaiton really helps me accept POTS/dysautonomia and learn how to make the most out of my life. Good luck and hope we hear more from you. Erika

Hi.. I just wanted to compare notes...I hear a lot of waxing and waning of POTS symptoms. However, I pretty much have consistent days. I wake up and can be movng somewhat for about 5 - 6 hours...then I need to recline and be quiet for at least 2 -3 hours....then I can go for a few more hours. Somedays are a little better some a little worse...but I am ill everyday....consistently. Anyone else? Erika

I don't get a lot of brain fog unless I have been upright too long. Most oif my symptoms are greatly lessened when I lay down but I get a few differrent ones at times. Sometimes in the morning I get numbness and tingling in my face and arms...painful skin...like it is burning...awful but when I get up it goes away.... but bear in mind...I never feel normal...laying sitting standing...I always feel winded and not well. Erika

I cry at times at how hard this all is...single mom and bad POTS...but I an getting used to it...I try to focus on what I can do, the people that love me...and I really think of those hwo will not live thru the year or can't walk or those born with such physical deformities....you get the picture. I try to be grateful I am alive. I am almost done crying...now I want to just get on with live and do what I can...seems to be a process. Erika

Just had to laugh...yes, I am very suspicoious of those folks who say they are very familiar with POTS! My mother keeps insisting that if I see her naturopathic doctor I will be fixed...meanwhile the best medical minds in America have not been able to nail it down..lol. I have tried a few supplements but none have really helped (nor hurt I might add). My best remedies are still beta blockers, fluids, and pain meds when necessary...oh, and laying down. Sorry I don't have more useful info to add but your post did make me smile.

I am not full of information but I wanted to add that I am not tired!!! I get very weak...hurt to move cna't breathe..and did I mention very weak?? But tired, no. So I don't know if they are the same...POTS and CFS. I know many put them together but there are obviously some of us who really are just POTS/dysautonomia stuff. Years ago I took something because I was sooo tired all the time (after Guillain Barre). I don't remember what it was...it was a very controversial drug but at least I was then able to stay awake all day and that was a plus!! Erika

I was tested for MG and was negative. But I just know there is something to this. I have a friend who has MG and CIDP (both neurological autoimmune responses)...this is what has put me on this path. CIDP is a form of Guillain Barre in which it is chronic. "I had the Guillain Barre now POTS...But you can see where I am going with this...if there is a potential antibody for those of us who got this as an autoimmune thing..especially those with 2 neurologic autoimmune problems..I am just not smart enough to decipher the informaiton I pull up on the web...I don't understand the implications.. I dont' know where to get all this information and my doctors are not much help....I don't want to come off as a know it all but obviously when your life has been turned upside down one is very very motoviated to figure out why!! Is there a doctor one can talk to from the Neurological Disorders Organization..anyone who might be thinking. My doctors are just used to the nomral case...even with Guillain Barre...most had never even seen a case of it..it was horrible! Thanks!! And keep any thoughts coming! Erika