KareBear

gjensen, that is very hard and I struggle with the fact that mentally I can and want to do everything, but physically I cannot. It's like an internal war with myself. I'm sure you paid the price for pushing yourself yesterday. Despite Moments of normal BP and heart rate, the dysautonomia symptoms are still there for most of us so you aren't alone. When I first became very ill in 2007, I was hospitalized, lost my job, was bedridden and everything seemed to crash down around me. I was quite emotional and depressed for a while. The first year was the hardest. Then I started to learn how to accept this new life and learn that I still had purpose here and there was a lot I could do to be productive without my physical body. I learned to accept help better from others too. It's a process and takes time but it truly does get easier so hang in there and realize that your life may be altered but thats all it is is altered and you can adjust to it. I know what your are going thru and it can be tough. (((((HUGS)))))

Regaining the physical activity you mentioned certainly isn't too much to ask and hope for! Being able to do the simple daily things would make a world of difference to us. I hope the new med works well for you, keep is posted!

Fingers crossed tonights the night for you!!!! Maybe a sleep aid will help get your body back on a sleep schedule again. Sleep well! Zzzzzzzzzzzzzzzz

I was prescribed mestinon by the Mayo clinic in Rochester MN so they must believe its benefits outweigh the risks, at least I assume so. I guess I trust their judgement since they specialize in POTS.

I think the initial Bp and heart rate change immediately upon changing positions is common, then the body tries to adjust for the gravity and thats the part they are looking for when looking at ANS problems.

I'm not sure if you have to be denied first before a lawyer takes your case, it wouldn't hurt to give one a call and ask. I applied first, got denied, then got the SSDI lawyer. Maybe someone else here will know the answer to this. As far as your husband's income, that doesn't affect you at all. It is solely based on you. Your past income and how much money you have paid in from past paychecks. I believe you can find out how much you would be eligible for through social security. They dont take any other family members incomes into consideration so that's not a problem for you. And if you have children or dependents you also receive money for them if you get approved for SSDI.

About the school loans, there isn't much you can do about them but pay. If you default on student loans they will withhold the funds from income tax returns and if you have disability payments they will take the money from those too. Its unfortunate that they dont have more help for the disabled especially when it comes to loans.

I have been on SSDI for 5yrs now. You can go online on the social security site and fill out the lengthy application to start the process. Do be prepared to possibly get denied the first time around, it happens to majority of people, but then you can het an SSDI lawyer who will help you win. The lawyers only receive money if you win and then the lawyer gets a percentage of you claim or the max they can charge, there is a cap (max dollar amount) they can charge (it was about $2500 for me I think). The money is taken out of your first check so you never have the money taken from your account really. The first check will back pay you from the time you originally applied, so if you apply today but dont win your case until 6 months from now, they pay you for 6months of back pay and the lawyer fee is taken from that amount. You do have to be disabled for i think 5 or 6 months before disability will kick in and pay. It can be a lengthy process so be prepared. It can take months or years so sometimes getting the lawyer to help is a good idea. To answer your main question though, yes you can get disability for your condition though not technically for "POTS". For me I am labelled as a "heart condition" so its based on your symptoms and what disables you. Good luck!

What a beautiful voice! Was that you on violin in the background? Thanks for sharing

I think how surgery affects us can be different for different people. I did have earlier surgeries years ago that I did fine with and my symptoms did not get worse afterwards, they stayed the same. I wonder if because this surgery was major compared to others it could be why it affected me more. So, if you do have to have it removed you may do just fine. I always just made sure the anesthesiologist was aware of my POTS before the surgery. My symptoms weren't that alarming which is why it spread so far before it was caught and I have been told this is common with ovarian cancer. I had pain and bloating mostly which worsened over time until the pain was quite severe. Also my menstrual cycles eventually became irregular which was abnormal for me. I had ovarian cysts before and knew the pain of those and this felt similar at first so thats why I wasn't concerned but over time the pain changed and I could tell it wasn't cyst related. You are at a huge advantage that they are watching the complex cyst closely, that way if it is something they will take care of it early. I will pray its benign and you wont need surgery! Take care and let me know how it goes

Hi Jennifer, I'm not sure how my Bp was during the surgery but maybe because we are laying flat and getting lots of fluid (they give fluid before the surgery too) it may keep Bp stable enough. I did have a hard time waking afterwards and that was Bp related and felt horrible afterwards. I hope your cyst goes away on its own and is nothing to worry about! They are very painful, I have had those too. I'll keep my fingers crossed for you. Hang in there!

I pray that changing his diet helps significantly! Let us know how he does, I will keep fingers crossed (and toes!).

I'd think "borderline POTS" would be enough reason to go to Mayo and get a second opinion. I agree with others that some days our symptoms are worse so could have just been a little better today but your daily symptoms tell a better picture. That was an unusual TTT. At least they are still feeling like it is POTS related. I hope the doc can try some meds to help you now.

Sarah, this sounds absolutely horrible. You certainly did not need this, I imagine it made your heart and BP even worse. I sure hope the complaint you filed is taken seriously and they take action. You have every right to complain, I would have complained more! I'm sending big (((hugs))) your way.

Lol, Lifeless. I agree completely.

Were you still on any meds, beta blockers, before the test? I would wonder if they affected your test possibly. We know that many of us can get our heart rates or Bp controlled with meds but still have all the other POTS symptoms.

Rachel, I can imagine your frustration, this has been a rough journey for your family. I pray you get much deserved answers soon. Your son is lucky to have a mom that works so hard to help diagnose him, if anyone will figure this out it will be you! Sending big ((hugs)) to you.

I've had multiple spinal taps for multiple reasons and dont remember anything being abnormal but then again I never actually saw the report. The docs just say its fine. What kind of MRI are you referring to? I have abnormal neck/spine MRI's.

(((Hugs))) I am sorry the doctor was rude and unhelpful, that's so frustrating when it's so difficult to even make it to an appointment and then to have this experience. It happens way too often to us.

I never knew BB's can cause these issues, or mask symptoms, but this is interesting. I never check my blood sugar and haven't in years. Maybe I ought to check just for kicks.

I'm sorry to hear today is a bad day for you. I have this happen to me often and I'm not sure why but if I overdo it the day before it certainly brings this on for me. I hope your heart rate calms down soon and you feel better.

Summer is worse for me (i dont handle heat) and I love these cooler months but I live in Texas so our weather swings aren't severe like yours and we dont get snow. It's still in the 70's here. I used to work with a girl with Raynauds and her hands turned bluish when she was inside in air conditioning like at work but this is my only first hand experience with Raynauds. I dont know much about it except what I saw her deal with. I'm sorry you are going thru all this.

My doctor told me it would take me 4-6 weeks possibly to not feel horrible on my new beta blocker and to push through and he felt confident I would adjust to it. It was a terrible 2 months almost for me but he was right I did adjust to it. Like the others said, I would keep your doc in the loop about it but it is possible you need more time to adjust.