erikainorlando

OK so most of you know there was a mix up at my doc's with my disability notes and they closed my disability case...I am in the middle of having it reinstated but my EP that I loved resigned and I had to see a new guy today. I waited my alotted 2 hours to see him and the first thing he said was "your thinking and attitude can cure you"...hmmm so now I am speculative.."if you push through this POTS then you will feel better..don't let it define you".. so I figure ok some ok points there and I talk to him about getting POTS and having had Guillain Barre..some overlap there possibly..so I say now I still can't work but my paperwork was messed up bla bla bla.. He says.."I am not comfortable doing this for you".....everyone with POTS works..even those who afre passing out all over the place (which you are not..he points out to me) work... I got very angry...said I never have asked for anything for nothing! I have worked post Guillain Barre and most doctors would keep me out just on that. He told me to get a neurologist that would file for disability from the Guillain Barre! I told him my neurologist had no problem doing that but in fact if I had not gotten POTS I would be working out of shear determination...but due ot POTS I real real realy can't. I went crying to the office manager who was compasionate and understaanding but obviously can't write me out of work! I don't know what is worse...feeling horrible all the time or having people assume I am really not that sick ... including the medical profession..and treating me as if I am a hypochondriac! Is this true? How do people work when I can't even promise I can blow dry my hair..let alone cook dinner...I mean I am sure some people can with POTS but not all can..??!! Help!! Erika

Hmm.Erik...and all you other brains out there!! Help then. If I push myself, like say when I was trying to work, I would work perhaps 6 hours for 3 days in a row and then I would be sooo weak that I couldn't walk across a room. I would shake and stop moving..couldn't get my body to move...didn't work..like when I had Guillain Barre but if I rested I could move again (short periods) andIU had to be bed-bound for several days before I could begin to move regularly. Never had this before POTS onset. Weakness is very severe for me..and I have to rest often and go very slow.

Yes...I have had many EMG's...never any fun! I have bad nerve damage from Guillain Barre Syndrome years ago. When I have pushed myself with this POTS/dysautonomia, I get to where I can't even walk..too weak. Weakness (muscle weakness) is one of my biggest comoplaints with this...for what it is worth. Erika

I think that is good! Had they not tested you for Lupus before? Do you have POTS on top of Lupus...or did you test positive for POTS previously? Was your onset after a virus? Just curious!! Erika

Don't know my dear. But I have had terrible chest pain. Now I have to say that it is usually coorelated with being upright or activity...EVEN if beta blockers ahve kept the hr down. My has gotten somewhat better as I am using the real toprol rahter than the generic. Not sure why tho. I had one EP think it was arthritis...I told him I got it with the onset of POTS...so he then said it was POTS related but not sure why... Erika

OK...so if you look at me you think, attractive forty something year old woman in good shape...I know most people wouldn't guess that I feel like I am walking through bricks most of the time. My mom is very healthy and 73...she has never really been sick a day in her life. I try not to expect too much but I am consistently amazed at how insensitive she can be. She still walks 6 miles a day and stopped working last year so she could go on more cruises etc. with my step-dad who still snow skis...just so you get the picture. Last week I told her of my friend who has leukimia, has lost almost all his $$ from the current real estate market, and his wife is leaving him. I told my mom he is so afraid as he feels so sick and is on his own. She said she feels so sad for him...it is so sad for anyone to be alone and ill.."why doesn't his family help" she says. Hmmm. I am very sick most of the time, have lost almost all my saving from the real estate market, the love of my life took off...and I have 2 kids to take care of!!! AND she (my mom) only lives 45 minutes away (altho she is way to busy to help)! I just hung up with her...she says "are you still doing that Vanderbilt thing in April"..."it is very far away ... are you sure you want to go?" She then says, "well, you didn't say if you needed my help and I have something I really want to do in April so let me know if perhaps I can help you out alittle but I don't really want to promise too much". Most times lately I am in a good spot emotionally. But this just breaks my heart. I feel so alone when I talk to her..does she not get that I can't do too much? How can she love me and kick me to the curb? Sometimes it paralyzes me with fear when I think that I really have to fend for myself and my kids not matter how bad off physcially I get. Then when I get over the fear, I want to hit her in the head! Do people think I am faking? I just don't get it...I woulnd't treat a dog this way. Sorry for the rant. Erika

My goodness. I am with Jana! I am so jealous. I just can't even begin to function like a normal person..working 8 hours or even 6 would make me feel like an olympian!! When I get that well you will hear me shouting from the roof tops states away! I got up did some housework and showered. Had to lay down for several hours...I don't get tired, but I get very ill feeling. Went for coffee with a friend and did a little grocery shopping. Folded a little laundry and am reclining..having an ill spell again (it is like this..up for a few hours and then ill and have to lay down and then it cycles again!). Do most of you function like me?

Welcome Noreen! Sorry you have had to find us this way..but we are a welcoming group! You sound far from the village idiot! Be gentle with yourself. Learn as much about this illness as possible, it will help. Erika

Michael - Hang in there . It will get better. I am a 46 year old mother of 2...my daughter is your age. But I feel your pain! I rememberr thinking that I couldn't bear another day feeling like I did and worse yet...no one understood and I felt like people thought I was a hypochondriac...I was frustrated and scared and felt awful!! You will learn the best way to manage this illness. Is your family supportive? I don't know much of OCD as to how it relates to dysautonomia..there are many others who can help you more with that. But I can tell you to hang on and as you learn more and get more help it will get better for you! Erika

No real idea...but I get periods when I am real POTSY I just can't talk ...can't breathe well. I am sure it has to do with the lack of oxygen...before I was diagnosed when I felt very sick (apparently POTS but didn't know) my atrial blood gases registered 77. Later the same day after sitting and resting it was 95. Just chiming in...again with lots of empathy but no real answers... Erika

I just want to echo Firewatcher, Katherine, and Rachel. I cannot increase my activity too much...slow is better. Relaxation and rest is thekey to all my ailments! If I push it at all..severe backfire! I do not seem to build endurance...I know doctors that have told me to keep increasing bit by bit...but it doesn't work for me. I get weaker and weaker if I increase...I don't really get "tired"...I get weak! Not sure if anyone identifies with this one. Erika

Julie - THAT IS WONDERFUL!!!! So glad for you and him. What is MCAD by the way? I have heard you speak of it before but I am really pahing attention now!! Erika

Thanks guys! I usually am not all that constipated...but have been for the last week.. but my diahrea etc seems to be related to activity level..much like all my symptoms....does this make sense? BellaMia - they did look for diverticuli (spelling??) but said everything was fine. I thought that was what it was because it is mainly in the left side... Flop - yes...it feels like spasms...so painful..so painful. But after my "episode" of diahrea I have relief. I have never had this prior to POTS..

I have had this in the past but earlier today was terrible..not sure the episode is over either. So if I can be upright and moving..perhaps a little more than my usual sedentray self...I frequently get terrible and I mean terrible stomach cramps which usually results at some point in diahrea. Then I feel better. But for this past week I have still been pretty constipated. Today after doing light housework this morning I took a shower and started to dry my hair...I knew the POTS end was near..but I continued to dry my hair...I got stomach cramps (high right side) like you can't even imagine...as painful as childbirth I think. NowI am sitting.. and it will I am sure subside (however, still no bowel relief) ...it is completely incopacitating when this happens. I drop to the floor...doubled over.. I have had this ever since my POTS onset...it doesn't happen all the time but enough. I saw my GP and he did a cat scan and it was normal..my neurologist says it probably is the gastrointestinal component of POTS. Anyone else get this and what do we do to help...I don't mind laying on my bathroom floor but it is not always that easy! Thanks!!

Although I pretty much just have the standard POTS stuff, I agree with BorkenShell in that the autonomic nervous system touches many areas of our body and we can pretty much bet on many strange symptoms!! If I remember correctly you have dysautonomia resulting from a drug overdose which makes yours a slightly more unique situation. I had Guillain Barre before I had POTS...I am sure there is a bit of uniqueness to mine as well..probably unique for all of us but yours stands out..I would research dysautonomia resulting from drug overdoeses ... I am sure you have but keep looking. Hang in there. Erika

Totally relate unfortunately. I can't tolerate much of anything when I am feeling really bad...I always say I feel like I am being held underwater and just need air and people keep bugging me for stupid things and I freak! It is very hard to be polite and easygoing when one feels like they are dying!! Thanks Firewatcher for your honesty. I just so identify. My kids come home from school at 3pm and I am really on my way down the whole POTSY road by that time. I have to sit and sometimes not move or talk for a couple of hours like from 3 - 5....my son is always asking tons of questions and my daughter is loud...I struggle to be nice. Noise can send me over the edge when I am in one of my sick spells. I have also seen I have really had to watch my temper...I get real mad reall fast...I thought it was the stress of everything but it really feels more physically based. I try not to talk when I am getting like that..and I try to forgive myself. It is just challenging and we are all doing the best we can! Erika

I love Pepto!! My friend all summer. It didn't bind me up like Immodium..although it didn't control all the diahrea either..but for me I'd rather still have some diahrea as opposed to the constipation (too bad there isn't a third option!). Very gentle drug as far as I am concerned and I lifed that. I like the tablets better than drinking the chalk stuff but I am sure the have the same net affect Good luck..hang in there. Erika

Yes. There is even info on it in the dinet info page. I get very ill from emotions. I feel very ill today...but I had to teleconference a court proceeding with my daughter's father this morning! If I get nervous about something (i.e. today)..I can feel my skin burning and my nose runs on top of all my regular stuff!!! Still adjusting to all this stuff in Orlando! Erika

Yes...I have noticed that my skin is loosing some elasticity but I am pretty sure it is from just being ill...not moving as much and a general state of not feeling well!

Joy - what is RND? Sounds rare to me!

Well..for me. I can do well if I am rested. Once I have been upright for any length of time all bets are off. I am not sure if it is because I start to feel so sick or my brain is actually not working so well. I just try no to make too much of it. My mom said having POTS is trying to function like being shot in the foot with one arm tied behind our backs...and therefofre yes, I think at times we are distracted and aren't operating at optimum level...

Boy, that is great. Cymbalta didn't work at all for me. My hr went crazy. Beta blockers and zoloft are the best bets for me so far. But I would clearly be afraid to fly...not quite sure why but I am afraid of all that movement and having to sit with my feet down for so long...so kuddos to you! I will usually try any med ... just about ready to give my right arm to feel better!

Yes....that makes sense and is my thinking too. I am sure there is a more of a breakdown. Even if one just takes a look at the difference between those with EDS/POTS...POTS in teenage growth spurts...POTS from viral illness...let alone POTS from circumstances such as yours. I am sure there is a huge difference on POTS from different etiologies.

They had a great time! I did really well! I rested beforehand and then I sat a lot at the party. I even cleaned up afterwards I was feeling so well. I had a DJ and he played all the young music (which I think is headbanging anyway) at a very very loud level..honestly I must be getting better or at least better at handling my POTS. It is all good considering last year I couldn't walk across my hospital room. I know a big part is having you all to listen to and learn from and occasionally (well more than my fair share for sure) vent to you all! Erika

So last year I was in the hospital on my daughter's birthday. That being said I decided to throw a big shindig tonite as I am more able and she is now 16!! I have done as much advance work as possible but this morning we had to get the patio all ready. Straighten up etc. I am always down from about 3 - 5 so I am doing my reclining now. But I did too much this morning and feel awful. My mom is here. She keeps talking and talking. Furhtrmore she is always taken back by my very ill spells...it never registers that POTS means I get ill from being upright and moving...if I don't talk and lay still I will be able to pull something together for tonite....if not I will be in bed at 7!! OK...so I will keep trying to relax admist the noise .. does anyone else feel worse with a lot of comotin? My daughter is a great help and understands...my mom ...well, she never gets it!! So wish us well. I have 35 16-year olds coming in 3 hours!! Erika