KareBear

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.

Racer, i hope you are hanging in there and today your pain is better. About filing a complaint with the hospital, it's not a bad idea. I had a bad experience in the ER once and contacted the director of the ER about it afterwards. He not only took action against the nurse who treated me so horribly but also gave me his private cell phone number in case I was ever in the ER again and had any problems I could contact him directly immediately. So it doesn't hurt to try. Plus like you said it would make you feel a little better.

Thegron, have you checked your BP when your hearing diminishes? To my knowledge it is very common for hearing to fade when your BP drops so it is possible it could be due to Orthostatic Hypotension or low BP in general.

I have tried taking melatonin during the day/morning and it knocked me on my butt for the entire day. Literally couldn't function until after 5pm or later. I wasn't a newbie to using melatonin either, I had used it many times to help me try and sleep at night and the dosage I used was 3 mg. So my personal experience is that it makes my POTS symptoms worse.

Everyone has given me some great tips and I cannot thank you enough. I am going to try everything until I find what works. I am so grateful for everyone here and that comes from my heart. It's so nice to have such caring and helpful friends to lean on here, I feel like I at least have some hope now and am ready to try these tips. Thank you all and I will let you know how it goes.

I'm deaf so I guess mine doesn't count lol

Thank you Alicia, I really need to try these things because it's become so hard for me. Do y'all notice if sleeping in shorter spurts or longer full nights rest makes a difference upon waking?

I know exactly what you are going through. I dont have a single friend left and haven't for years. No one to even text or talk with on the phone. They all moved on when I got sick so it does get lonely and as you know trying to make new local friends at this point is nearly impossible. I want you to know that I am here if you want to talk anytime! I'd be more than happy to chat with you, let you vent, hear about your days that are bad, anything. Hang in there!

Thank you, it is helpful. How do you raise the head of your bed, what do you use? Do you put something under your mattress?