erikainorlando

Thank you! I think all that I read on hear is of folks who have a fighting spirit. Trying. Talking. Perhpas fainting..but getting up again. Most folks will never know the struggles we go thru daily but we know and we are successes. I took an exam on Saturday morning for my masters (a state boardI have put off for years but I thought now that I am home and sitting so much..I could try to do this). I didn't even think I could sit up tht long....but I did. Someone asked me if I thoughtI passed. I said that wasn't the point. The point was that I tried. It was so hard for me to do this...but I did.. Thanks, Erika

Hi. Maxine...wow I am sorry. I wanted to chime in too. Just a little of my POTS story.... I started seeing this PCP last Oct. after the nurse practitioner at work gave up on me. I had a flu in Sept. and wasn't really better...very weak...felt so ill. I kept getting shots of antibiotic and steriods and still would try to work. I would work for 3 days and go to bed for 2. The new PCP thought I was a hypocondriac. She did some blood tests and since there wasn't anything wrong she told me I was just worried as I had Guilllain Barre in 2001 and this was post-tramitic stress disorder etc. I told her I had my masters in counseling psych and didn't think she waas right Anyway...I went to the hosital a few times in Dec. was admitted. My hr was high normal but I was SITTING. Even sitting tho it was around 110...which seems to me kind of high. Anyway...I had a CT scan of my sinus and neck as I said I had had a sinus infection to kick this all off. They saw an abnormal bone abnormaility in my cheek bone. This was 2 days before christmas. They thought it was sinus cancer or bone cancer... My PCP stopped in (rather her partner) and told me I had an obstruction in my windpipe...I told her the hospital doc said I had a bone mass. She lookedd confused....so she went out to the hall came back and told me I had both! Then she came back and said she made a mistake and there was no obstruction in my windpipe. The hospial doc got confused and told me it was the right cheek...but the CT report said it was the left. I had a previous CT scan done that didn't even show anything (but htat was an error....the radiologist said he was sorry...) They let me go home Christmas Eve....because there wasn't an ENT to help until after the holidays. I couldn't stand for any length of time....but I thoght it was because I had cancer. Jan 6th I had sinus surgery...they went in thru my mouth...took a quarter sized peice of bone out and then told me it was only dysplasia...propbably had it most of my life!! But I was still so sick........now with a mouth full of stiches...that was the all time low for me! Weeks later I went ot a pulmonologist whose setup is to have you stand and to your vitals before going in the room..my hr was 156. Finally they got onto it...but it was awful....I have loss of sensation where they did the surgerry in my cheek..but I don't have cancer.....thank god...but no one could get anything straight...I really think thre are too many specialists...not talking to one another...or maybe they are too busy...but could they get the right side of the cheek correct? Just wanted to add that...my own true experience at my local docs and hospitals...beloieve it or not. Erika

Count me in. I have noticed on the pyridimose I am a little more temperature comfortable. But I too have been sweating and cold at the same time............... It is usually realted to having been upright or active for too long. I used to get sweating during sleep...but I think this is getting better. Erika

Hi all. No I do no have medicare. I only have Aetna...HMO. I think he wants Mayo as he wants to see if their is a connection between Guillain Barre and POTS. I don't think necessarily it is a POTS diagnostic tool thing but rather, why in Gods name, does she keep getting the weird bad things in her nervous system after a virus.......and can someone make her more comfortable. We can't seem to find someone to connect the dots locally. But he at least tried. I saw a differnt neurologist a while back locally...she simply said "I didn't study the autonomic nervous system". Then she took my BP laying down and then standing...and said..."no...you don't have POTS....your BP is pretty stable". I told her it was really only affecting my hr...then I decided to save my breath............ Erika

I have seen my neuro for Guillain Barre since 02. I talked with him very briefly in March after my diagnosis. He said at that point let the EP treat me and if no real improvement he wanted me to go to Mayo. Since then I have been seeing my EP and I usually see my neuro's nurse practitioner as my neuro takes for ever when I go there. But I waited and saw my neuro yesterday. He really is a very nice smart man. I told him of my diahrea in addition to my regualr HR stuff. He said he thinks it is autonomic dysfunction (the diahrea) and all related. He wants me to go to Mayo. He feels that this is the 2nd post viral neurological problem and it is worth seeing someone who can tell is there is something underlyibng it. He said he wants me to go to see cardiology and neurology...he knows the guy in neurology. Hmmmm. Well, now if I can get my ins to pay. Mayo is out of network...this may be difficult. Erika

Thank you Flop!! Never had really understood it before but I sure suffer from it!! For me it is like from my chest up to the base of my head including my throat..like a line from my heart straight up to my head...laying down and lots of fluids are my only real remady. Someimtes it feels like I can't hold my head up one more minute. You are not alone... Erika

I get all sorts of weird sensations. BUT for the most part...I ignore them. Maybe that is not the way to go but I couldn't keep track of all of them anymore and the doctors are befutttled with even my most basic symptoms...so taht is the way it is. I too get the voice change thing. I get hoarse. But I did see an ENT who said, it probably is changes in the BP and HR and definately weakness can affect your voice. My nose runs as well...for these reasons I always thought I had ENT problems but I only have POTS. I think our bodies just aren't working right to say the least. Erika

I just wanted to add (and I know I am not alone) that if I do have periods in a day that I feel ok...I need to enjoy them because without fail, it will seem like someone sucked the life out of me with no warning. It seemssomeone took a giant straw and sucked all the life out of me...and I am done...cooked...can't stand...move....bla bla and bla.................it can come on instantly although it takes much longer than that to recover!!! Erika

Bjt22 - boy did yyou make me laugh.....yes...many times when I am laying down and rested I think...well...I am going to do this or that...one day I even thought I wanted to take my kids to a water park!!!! That idea left quickly... I am always amazed at how really incomopasitated I am... So no...I reallly have never had a day symptom free...not since last Sept. Erika

I was trying to explain to my boyfriend today that although the diahera is bad and stomach cramps are bad and the heart palpitations are no fun but the sick spells can stop you dead in your tracks! Again...it is after activity...makes me stop...can't funciton. Not even for one minute more... So do you think it is the neurotransmitter thing (too much) or too little blood to the brain or just too little blood? I have noticed in addition to laying down, if I drink A LOT it helps. So maybe that is support of the low blood volume things... Thanks guys!! Erika

Yes!! Sometimes I just way I am fine. Because no one other than you all can really imagine how bad I feel most of the time. Life threatening or not...this is really challenging at times. My boyfreind said today in response to my complaints..."ok, call me later when you are feeling better". I got so angry I thought "I do'nt usually feel better"... I am so glad for you all! This forum is a life saverr for me! Erika

I have been busy with a lot of sitting work so I have been better symptomatically (aside form all the diahrea!! ). But this morning I got up and didn't fee too bad even tho my hr was it's usual 138. So I started doing things around here....swept the porch a little..then i got one of my very sick spells. What is this? I mean I will even take the diahrea, the chest pain, palpitations etc. BUT it is from activity that I get these sick spells. Can't even explain it to anyone (other than you all) but my head feels like it is going to pop off, and i feel sooo sick...not nausiated...just weak, shakey, horrible sensation..that I never had in my life before POTS so I don't even know how to name it. A woman once said that it is the extra levels of epinehrine or norepinephrine or something life that... But I know you all have something like this... it is from activity... and if I lay down for a while...sometimes a long while...it will get better and leave. BUT hwat is this and does anyone else get these "sick" spellls? Thanks so much... Erika

I just keep trying...I think that is important...and thank God for my kids...they keep pushing me. I think I am like Flop in that I go for a couple of hours....have to lay down....then I can go some more. My friends laugh at me becauseI can't say go to lunch and then something after...I could go to lunch...lay down for a coupe of hours and then possibly do something else... Somedays I was getting very down and discouraged. I try to calm down tho and realize that nothing lasts forever...and something will change...toprol has made a world of difference and so has resting...in between stuff...someitmes I can even push thru stuff...but not very often... You hang in there... you are certainly not alone... Erika

Hi all. I have had a rough few days. A lot of diahrea. It has been going on for a week. I don't especially feel sick....just POTS as usual. Neither of my kids are sick....boyfriend isn't sick. I have had eposides of gastric emptying problems since POTS but this is ridiculous. I have at least 6 -8 episodes of diahrea a day. How can I possilby have anything else in me???? I am so hesitant to go to my GP because he basically is an idiot about POTS. I am controlling my symptoms with pepto bismal. It seems to get real bad around 2 -3 in the afternoon...which coincidentally is when I start to get my "sick" episodes...mornings are my best times (or anytime I have been laying down for hours...) Anyone else relate to this? Thanks... Erika

Still not doing so good...pepto bismal and lots of fluids... I don't think it is a bug. My kids don't have it. Can't eat hardly anything without this reaction.. I will go see my GP tomorrow but I really don't think he will be able to help. He was the one before my POTS diagnosis that told me to try to exercise more....I told him I couldn't even dry my hair... Thanks...Erika

No...I stopped taking the douible dose of the prozac (20 mg). Yesterday I didn't take any...got some refief from the Pepto Bismal and Immodium. HR is 140+ this am. I normally run around 115 - 120. I do think it coorelaqted with the increased prozac...and darn shame as that helps my symptoms (or at least some of them). Thanks all! Erika

I just have to add....I enjoy the intimacy etc...and don't really have a problem reaching orgasim BUT I get too HOT! And not in a good way!! Sometimes I have said...please get off me...I think I am going to pass out...just too HOT. NEver had this before..sweating... if I am well rested I can handle it much better...not as warm. Not sure all whats happening there..probably the whole temp regulation thing. Erika

Angela - I think it is coming from my anus...probably from so many times going to the bathroom. I do not have hemroids...have 2 kids but never any hemroids. I am a little worried...but I am going to keep an eye on it. I am very nausiated now...just took some promethazine...I got a while back for nausea. I have such cramping...\..just a bad day. Thank god my 15 year old is here taking care of me :0) and my son is at a sleepover...I can take anything for a few days...I just hoppe it is not part of dysautonimia...hr and weakness is all I think I can handle... How did they fix you? Thanks, Erika

The truth is they dont know "what to tell us". Thee really is nothing for them to tell us. This has been an awful day for me...so ill...nausiated, diahria. I am angry with my boyfriend...so I won't call him and tell him how sick I am...but this will pass. I think he needs a break from my illness for a night ... I could use a break from my illness as well Thanks God for my kids...it is soooooooooo hard being a single mom with this illness...but it is the thing that gets me dressed in the morning..and keeps me trying. propeling towards health and hope... AND thank God we have each other...and peptobismal...so far it is helping some....a little releif....Erika

I took Immodium this afternoon...no help. I took pepto-bismoal about an hour ago...I have had some relief...but I hear my stomach gurgling...I know it is just a matter of time.... Angelika - was yours a bug...? or dys related? II have had this since Tues...seems long for a bug... My rear-end is bleedingm when I am having to go now... Thanks guys...I am drinking lots but I am ill........ Erika

I don't know what is going on....at first I thought I had a bad reaction to the prozac (my EP doubled the dose) so I stopped taking the new dose. Then I thought I might have a bug. I have been having non-stop diareha since Tuesday...only getting worse. I took a med to stop it today but it didn't work. I feel awful...I am not dehydrated but I keep going...I can barely sit up from POTS symptomsas well ...headache and feels like I will fall over ...weak hr isn't too bad. BUT what is going on? I have started burping..well not burping (well small burps...) but frequently for the last week as well...maybe longer...thought just dysautonomia stuff...but I will be in the hospital if I don't stop going to the bathroom. I have been a little stressed....I have some personal issues...but I can't figure this one out...please...has anyone had this....tell me this is not part of dys...or if it is that there is a fix....I will be under 100 lbs.. Thanks, Erika

why did I think that Munchausem was when you did things to make your child sick??? anyway..I am sorry you went thru that. Many docs still look at me like I have 4 heads. I remember two that suggessted counseling. One to really be helpful but the first doctor I saw when I was just starting to get sick told me "it might be in my head" because there was nothing wrong in my blood tests...she told me to see a therapist...i told her i would love to but i wasn't well enough to sit thru a session.... just keep trying.... Erika

Honestly...I never knew or really know when my hr is crazy high...someitmes I get short of breath...have to sit etc. but I don't feel it beating...isn't that odd? Now....when I lay down at nite if I have been active that day (relative)...it is just horribly uncomfortbale...

I needed that laugh!! A vacation being in the hospital!! I am glad your husband is ok.

Wow worried mom...yes...just a little tachycardia...can make one feel really bad!! I am going to say a special prayer for him tonite..thank god he has such a caring mom.