KareBear

I had never heard of allodynia, thanks Sophia3. I read the link and cant believe docs always give me a weird look about this when there is an actual cause. They are ignorant, you're right.

Rachel, I dont know where Tyler's pain is exactly but I have had a problem with pain in my legs and knees when I wear compression hose, regular panty hose, and even blue jeans. I cannot wear anything on my legs that puts even the slightest pressure or it causes lots of pain. This is why I have never been able to use compression hose to help and the docs tried many types and many times with me. The docs kind of always gave me a weird look about it and had no explanation for it. My legs also dont swell or turn discolored when it happens. It is just severe pain. So I avoid those things.

The only thing that keeps my migraines under control is tons of gatorade and using my oxygen machine. I used to wake with terrible migraines in the mornings and even had ones that would last days or a week at times. I always sleep with my oxygen on and dont get the headaches like I used to. I use the oxygen during the day as needed but always sleep and even nap using it and for some reason it helps. It is not the reason I was prescribed it but coincidentally it helps. If I feel a headache coming on I use the oxygen too and it typically stops it.

I hadn't really thought about this until you posted it but unless I am hot I dont crave liquids or water but if I drink something like gatorade (something with flavor) I will keep wanting more after I drink a little. I now drink about 80 oz of gatorade a day. So maybe if you tried drinking something besides the smart water and see if your body craves it more? Just a thought. I hope you find something, you certainly dont need to get dehydrated. Take care of yourself.

I believe you can find help at the social security office and they can help you with the forms and filing. I would give them a call. There are many disabilities that require having an agent, family member or friend fill out the application. It would be worth calling or going to your local social security office to find out. I am so sorry to hear how difficult things are and have been for you. It sounds like you have been treated unfairly.

Do you think it could just be overuse?

There have been a lot of people on here mention this so I think it is pretty common for us to get worse with the hormone changes. I always have 2 weeks a month that my fatigue is way way worse than normal and just walking to the kitchen is near impossible. The 2 weeks are the week before and week of my cycle. So you are not alone. I cannot take BC pills either.

The one thing that seems to have helped me the most is time. I have tried nearly every med used for dysautonomia/OH/POTS, ETC. and different exercises, supplements, dietary changes, everything. Over time though my body has found a baseline and not the big dramatic symptoms it had before. Now everyday is pretty much the same with some slightly more symptomatic than others. I am no where able to do daily chores or work still but at least I know each day kind of what to expect and It took about 4 yrs for my body to settle into this "routine". I know waiting possibly years isn't very comforting but with time we all learn better what works for ourselves and there is a chance your symptoms could even out or stay more consistant and not have such dramatic swings. I hope Dr. Grubb can help you!

I never wanted to have to stop working either but it got to the point I would run out of excuses for being sick and started moving jobs often to keep from getting fired because of so many hospitalizations and absenses. Eventually i couldn't go a whole week without missing a day of work and I was always late, and the days I did make it I was becoming dangerous behind the wheel driving and blacking out. So sometimes the choice is made for us and we have to accept we cannot work now. It is hard to accept but we have to. Being on disability doesn't reflect on who you are as a person or how smart you are, it just means your illness makes ot unsafe or impossible to work or keep gainful employment at the time. You can always work part time hours while on disability so if you start to get your health under control you cam attempt easing back into the work place. It takes so long to get disabilty most of the time, it took me 3yrs, so you dont want to delay applying. You can always change your mind later if your health improves. If anyone judges you based on your illness and doesn't see you for who you are (not what you do) then they aren't worth being around. It is very hard giving up a career and it took me a long time to accept I couldn't do it anymore but deep down I knew I couldn't and knew I had to rely on help. It has helped my life tremendously because now when I have bad days I can take care of me without the added stress of work or worrying about my job. This may be a blessing in disguise for you. I wish you so much luck amd do hope things start looking up for you.

I may be wrong but it sounds like you are up and around a lot. Do you try and lay down or relax when you start to feel bad? I know laying down even for 15 min can resolve most of my symptoms when they occur.

This is a good example, my family is always pushing for me to join in on family events away from the house no matter how bad I feel. So tonight was a birthday dinner for my dad, the entire family was going and they didn't really give me a choice. They would say "you better get ready, we are leaving at 5:00" and when I said I couldn't make it I got the guilt trip....." It's for your dad, you need to try, he does a lot for us". You know that whole song and dance. So I pushed thru it to get dressed and go. It was horrible, I fought off passing out the entire 2hrs at the restaurant. I ended up just laying my head on the table hoping it would end and couldn't eat and barely visited with anyone. Now I am home, exhausted and more miserable. It will make tomorrow more difficult too. It wasn't worth it but I was pressured. It upsets and frustrates me when people do this to me instead of understanding. Now I have to deal with the aftermath myself.

What I do is sit in the bottom of the shower. Then maybe you wont get as symptomatic. I also dont take hot showers but if you need to warm up, sitting down on the floor of the shower helps.

There may be different reason for different people. I never had a problem with alcohol until I became very sick with POTS. I would attend parties weekly (you know that young party age) and had no issues with it. Once I got so sick with POTS I couldn't even take a sip of the stuff and certainly dont even crave it. Just thinking about it makes me feel bad. The few times I did attempt a drink I nearly passed out, had to lay down outside of a restaurant on the side walk, so I learned my lesson.

Welcome, and sorry to hear you are going thru all this. Pregnancy/childbirth can bring on POTS. If you haven't searched this entire website yet you may want to go out of the forum and look at the areas that explains possible causes of POTS and the "what helps" section. All of us here have been down a long road like you are on so can very much relate. There is also a secrion on the website where you can find Dr's that specialize in POTS in your area. And of course places like the Mayo clinic are big shots with treating dysautonomias (but personally all they really did for me was confirm my diagnosis). I hope you can find a doc that can help you soon, it must be tough with a young baby and all this mess. Hang in there, there is always a chance it can get better again. After checking out the other areas of the website maybe you can find some things that will help. If not, there is many helpful people here that can lead you in the right direction possibly. Take care!

Racer, I can relate to this. I had an employer that did me very wrong before. The problem is it is nearly impossible to prove your side and an employer can alter their records or say they fired you for any legitimate reason. The law is on their side unfortunately and it is so frustrating. Right now the best thing to do it try your best to move on and focus on taking care of yourself, dont stress over that jerk, it will only make you worse. Take unemployment for as long as needed, that will hit him where it hurts (financially) and by moving on and not showing you feel hurt (like he wants you to feel) will only bother him more I'm sure. All of this is unfair and everyone knows it but hopefully you can now take more time to get yourself better and focus on YOU. I hope it gets easier for you, hang in there.

I dont know what your specific symptoms are or what meds you take currently but there is a section on this website that lists things that help, including over the counter non-pharmaceutical things. Motrin is a good one in helping increase BP and if you need more salt intake you can buy them at your local pharmacy. These are just ideas of course, i dont know your specific case. 3 months is a long time to wait, I agree, but I would also be careful not to start any regimen that could alter your test results. Hope you find something that works for you!

I cant take hot showers ever, they always make me worse so I'm sure it could have triggered things for you. It sounds like today needs to be a "lay in bed and watch movies" kind of day for you Hope you feel better.

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!