KareBear

I'm so sorry to hear you are going thru all this. When I lost my job a few years ago it was very difficult and depressing to me. I went thru every emotion and it still bothers me some to this day. I worked hard to get a license doing a job I loved and it was taken away from me. Things do seem bad now but it does get better, I found it to be somewhat of a blessing because I knew deep down inside I could not work anymore and trying to make it to work each day was a struggle. I called in sick so many times I ran out of excuses. Maybe this is what your body needs right now, time to focus on getting better.

Have you tried to apply for SSDI? There also should be some local organizations that can help you get by if needed also. I am truly sorry you are dealing with this all at once. I hope you can focus more on your health now, get better, and get everything back.

This topic has always confused me. I was in top physical condition when POTS hit hard for me. I exercised everyday almost and did everything from aerobics to circuit weight training to treadmills, cycling, lifting weights....everything. Since I became worse I cant even begin to exercise, I feel terrible. Short of breath, light headed, and end up being sick for days afterwards. I certainly cannot leave the home to even go to a gym, driving is out of the question, I blackout constantly behind the wheel. So if exercising is supposed to help, how can people like me do it? It's one thing my doctor always mentioned (doing exercise) but truly I have tried and it is impossible.

I dont know how old your babies are but I believe everyone here feels guilt of some sort about being sick when it comes to family. Not being able to help out or do your share around the house is hard. I'm sure your kids will get old enough to understand eventually and for now they may just see it as normal that you cant go places if they dont know the difference. From what I have learned its much harder on moms than it is on kids. Kids adapt but moms want to do everything and be everywhere with their children. So more than likely they are doing just fine and are happy children, its the self torture your mind puts you thru that makes things seem worse. Look forward to the good days and spend more time with them then and a handful of good days and good memories will always make up for the not so good days.

Sounds like your wait isn't too much longer then! I hope once you see the doc and start some meds that you will have some improvement. Just in time for the holidays That would be nice!

Welcome! You will find a lot of very helpful and friendly POTSy friends on here to help you through this. I'm not sure why your docs have not committed to the diagnosis yet, but a Tilt Table Test should be able to give a correct diagnosis.

It's nice to meet you, but sorry it had to be because of this illness.

Take care, Kara

Ah, Rachel, this is a really good point and would make more sense. Thank you

I usually have low BP, never have had a high BP reading ever. I got the same thing from the link when I read it so maybe I'm just weird or could just be complete coincidence that it seems to increase my BP. I assumed it should lower it and that's why I posed this question. I had an opposite reaction to Midodrine also when I was prescribed it years ago, it bottomed out my BP so much worse that I couldn't even lift my head. The doc just stopped the med and said some people react differently. I felt that was strange though.

Becia,

I have never had seizures but wanted you to know how sorry I am that you are going thru this! It sure sounds so scary and I'm sure I would be using some "choice words" too if it were me lol. In all seriousness though I want you to know I am here for you and hope the seizures become a thing of the past. Lord knows you dont need this on top of everything else.

Take care!

I dont know if this is the same thing or not but I have episodes where I am "lost" literally. I can not remember hours where apparently I did things and talked to people and made no sense. Once it was so bad I was taken to the ER because I was so confused and my family had to convince me they were taking me camping just to get me in the car lol. I remember nothing. Not even being in the ER. I remember the next morning in the hospital. That's all. They felt (after testing) it was lack of oxygen to my brain causing it.

Is this similar to what you go thru? Now that I am on oxygen full time I rarely have these episodes. I sure hope yours get better!

Thank you Alex, as always you have a wealth of information! I always appreciate your info.

Sarah,

Your lucky to work there and get treatment! I imagine some days are pretty rough for you to make it to work or stay there, are they understanding of your condition? I'd love to work again. I've had symptoms since I was young but mostly started affecting daily life in high school (12-13yrs ago) and finally diagnosed in 2007 when it got disabling. Even went to Mayo in 2008, they confirmed it all (and Rochester is a looong way from Texas lol). I now have some new challenges to add to it all so Life stays interesting

Wow, Rich. This all makes a lot of sense.

I have never had chiropractic work but have tried acupuncture by an MD who understood POTS. I did not see any change with acupuncture but to be fair I also couldn't have it done as often as recommended (leaving the house is very hard for me). So I will be interested to hear how this goes for you!

I have been put on morphine for non-dysautonomia reasons and have strangely noticed that it drastically decreases my orthostatic intolerance. I've tried looking up info on this but cant find anything. I know no one else is probably in my same predicament but has anyone else been put on a med for something else that coincidentally improves some of your dysautonomia symptoms?

Everything else is still acting up but it somehow seems to help my BP.

Calisto, I do know what you are feeling and going thru. I think many of us go thru periods that are tougher than others and it is mentally and physically exhausting. When I first became homebound it was the toughest thing ever! I dont know how long you have been battling this but I can tell you that you can and will adjust to your new life. It may take a little time but it will happen. Hang in there and try to focus on the things you can do and the things you can control now, try to find a new way of still being yourself in this new life and you will be happy again. Trust, hang on, and dont give up hope! Push thru this and lean on those of us that understand, you will come out of this. Sending you cyber hugs!

Hmmm, I was in a severe car accident as a teen and have severe neck problems and curvature/degeneration problems too. I have neck problems daily so this is interesting.

This topic has always bothered me most. I think age and maturity may be a factor for some because I lost ALL my friends ( even very close, best friends, and life long ones) when I became very ill. That was not long after high school though so maybe they were too young to care or understand but even now I still try to reach out to some of them as friends with no response. So for me its 98% dont get it. I have amazing parents that do though so I'm thankful.

Interesting! Thanks for posting, I saved the document

http://m.huffpost.com/us/entry/4055887

Did anyone see this? America's Next Top Model contestant has POTS. They eliminated her when she was too ill to stand before the judges. Maybe having thing like this on TV will give more awareness to our illnesses...I hope.

Have you tried using Capsaicin cream, topical cream? I've heard it's supposed to help the pain from shingles. I have never had shingles or even chickenpox before so I have never used this. I just know of family members who have so it's just an idea. I know it must be terribly painful so I hope you find some relief!

I believe the cream is 0.025% applied up to 4 times daily (not on broken skin though), but you may wanna check this out first to be sure.

Janet, thank you! Everyone here is great and I'm thankful for all of you here.

I get this a lot. Especially when I am awakened from sleep by someone or something I feel like my insides are jittery. I always assumed it was dysautonomia related but not for sure.

Thank you Psalm 23. Where do you buy an abdominal binder for people like me that cant leave the house? And how do you know what size? It's something I never tried before but would like to. About the earplugs, it's a great idea but luckily I am deaf so no need for those lol. I appreciate your help!

Jan, what you described is exactly how I feel. I cannot function at all before noon or later but I feel closer to human very late at night so I end up staying up til about 4am every night because I feel better later. Even when I have forced myself to sleep at normal bedtimes I still cannot function the during the mornings no matter what I do. I seriously feel like a vampire lol. Thank you for sharing your experiences, I feel like this is just how my body is going to always handle each day and nothing much I can do about it.

AllAboutPeace, your comment about your puppy's "morning toy" made me laugh because I do the same exact thing. Dexter loves an empty water bottle to crush. It's a little loud but sure does buy some time Thank you for all your help.