McBlonde

Am I the lone person that can't stand anything constricting my abdomen in any way?? I've been like this even before POTS. It feels like everything gets pushed up into my lungs.

Me, too. Why is that do you think?

Yes, he did! Not only did John Kennedy suffer from Addison's Disease, he had that back injury in WWII that caused him extreme pain...and wore a girdle type garment for relief.

Wondering...... This is the best garment you can buy that is used after liposuction. Think it would work for POTS compression? http://designveronique.com/cgi-bin/ic/dv2/C53.html

well, I don't know if I figured it out, but it's the only thing that was different and I can breath deep again. I wonder if it's wheat or glutten or just some additive? I had potato soup out of the can that didn't bother me a bit. So hard to know anything.

I was thinking earlier, when a remission or flare for that matter hits, we go through our minds and think what did I do.... I back track over all the exact steps and yet sometimes, the answers is "I really didn't do anything. It just happen. Again. For the upteenth time.

How are YOU feeling?

I'm Leo

Ah, do you have the link to her blog? I'd like to read!

Does anyone have any studies to back up our 100% yes answers?

Hi Rich, I was wondering this.... Did your doctor have you sit at the end of his exam table and to HR, BP, etc?

0 negative here!

It seems to have been PRETZELS that almost pulled me back! Additives. Wheat? I don't know. The previous nights I had had rice, beans, potato soup, and grilled vegetables with my big glasses of V8 & salt.

Oh Rich... so sorry you are going through this. Just a couple of thoughts to add.. When I was needing to file my disability, because of my medical background I kept thinking in terms of diagnosis, symptoms and prognosis. It was very hard for me to let that go... because that is not how the claims are judge but rather it's by how the illness limits you on a daily basis. (Activities of daily living) I ended up not getting a lawyer, not filing online, but rather applying over the phone, the rep filled out the application for me as I answered the questions. I gave them permission to contact my last employer. That helps if any of those last 3 employers you are talking about saw your symptoms and can express how you couldn't do the job.... I'll try to think of anything else that comes to mind. Wishing you the best!!

Can't take that deep breath any more. Hope I am not going to wake up tomorrow with all my symptoms back. Yikes!

I have always thought mine was a disease of the brain... Like a computer going bad..... a message to receptors issue.

Barrter syndrome was recently mentioned in an article about POTS where similarities were mentioned.

Really? Huh... I didn't see it, but it was probably when I was under the brain cloud!

Well, now you have the receipe and you can repeat it - if you need to. Let's hope this is something that will last.

Thanks so much! I know I will wake up back where I was any day now, but it was nice to remember "normal".

Thanks Issie! It wasn't the baths, because I've done those before. Maybe it was all of it added together got my ______________ up to the right levels,

I got awful headaches from Midodrine and none of the benefits. I was sure hoping that it was going to work for you. It seems like we used to hear a lot of success stories from Midodrine, but I wasn't one of those.

Do you take Licorice Root with it?

It started Thursday... I felt really bad that day so I had 2 large glasses of V8 putting an extra tsp of salt in each

All that V8 caused me to have diarrhea

So I drank many bottles of Gatorade

I took an Epson salt bath

Friday afternoon I was in a deep sleep when a loud noise woke me with a start

I had continual palpatations and tachycardia

I finally dug out a bottle of my old 5 mg bystollic

Saturday when I woke up I felt great

Feels like high vs low

I can take DEEP breaths which I had only been able to do before if I was at the ocean in high humidity

That heaviness on my chest was completely gone

Have adrenaline surges that causes peeing and hot flashes but I check my HR and it's normal

The heat covers me in a thin layer of sweat

euphoria

teary eyes

CLEAR thought

Like a saline high

The only medicines I am on is Levoxyl and Florinef in the AM and a baby dose of Trazadone at night

I am very realistic. I know that any day I will wake up and it will be gone, but oh my goodness how good it feels to feel "normal" if only for a few days!

Crazy story isn't it? It's never happened before like this since 2003...

I have no idea why.

Feeling better???? What have you done different?

YES! Can you believe it? From in my bed to dancing around last night to Whitney. It's crazy. I haven't felt like this since I got an IV after a syncope episode and that was last April! I have been making a list of what happened the day before.... I'll type it up and post it.

I'm of the opinion still that mine is one of hypothalmic problems..... Either the mesaage not being sent every time or at all. BTW, now on my 3rd day.. after 9 months of no relief. Crazy! It feels like a saline high. I know it won't last, but boy is it great!

corina... that is great news that it has worked so well for you. My doctor is Dr Hoeldtke who did that research in the 90s.

I want to start that exact same rehab you described, only using Saline IVs for for recovery and building endurance.

It is Issie! For the second day in a row, my mind is absolutely clear (I know it won't last) but while it's clear, I hope to research the above more. Until y'all posted the areas you were researching, I had always thought of the issue in terms of damage (malfunction) to the hypothalmus sending (or not sending) out messages to the receptors......

The last 8 hours I have been a fabulous moment of reprieve which I am sure won't last much longer. It's the first I have had in almost a year. Anyway.... I am wondering about the mechanisms of this syndrome. Causes dehydration or rather the a problem with reabsorpbsion of electrolytes and minerals..... sorta on the line of recent discussion.....

http://barttersite.org/what-is-gitelmans-syndrome/

Beyond frustrated.. I should have known this would happen. I got a report in the mail from cardiologist saying my holter showed in significant abnormalities so no need for further testing or medication changes. But yet I can't even carry my nine month old because of the fluctuations in my hr. It will go from 40-80 while sitting without any strain and then drop back down to 40. And on standing will spike 40-60 bpm and seems to be getting worse. Does anyone know of a doctor experienced or even sympathetic with dysautonomia. Anyone in the area of ms, this has been 18 years. And I just want to be able to play with my kids, and to just at least have treatment for symptoms but they just give up.

I don't know what area of Mississippi you are in, but Dr. Thompson is in Pensacola.

my aldostrone was low, that is OK I was told. my thyroid is low, my IGF-1 is 175 which is in the range but the range is wrong, 50 for an IGF-1 at 33 is wrong and the starts the range! I read online it should be 200-300 ideally.

I did see a pituitary doc but from his comments I am scratching my head as it doesn't even make sense if you read their own guidelines!

I've been to neuro, one said 100% autonomic and thought 2nd to mito wanted biopsy, sent me to another neuo who said well right now your BP is 90/50 which is fine and you can squat 10 times (I struggled) so he declared me healthy just nuts

Oh gosh. I am so sorry! When your pituitary fails, it nearly always goes in a certain order....first you loose your growth hormone, next LH & FSH, then TSH (thyroid) and usually the last one lost is ACTH, which of course controls adrenal function..

A non-functioning pituitary tumor can cause hypopituitarism.. A whiplash ..... A concussion ... OR as it appears in my case, the messages from the hypothalamus to the pituitary go haywire for some unknown reason.

I know most of the good pituitary doctors across the country if you want to PM me. They are few and far between. I spent a few years a 10s of thousands of dollars before I figured out saying you were a pituitary endo and actually being one were 2 different things. The good news is that if this is part of your problem.... you can get on the correct replacement hormones and will feel a lot better regarding your endocrine issues. Let me know if I can help!

McBlond - has your BP mproved?

It still drops when standing and come to think of it..... I was already on Florinef when I was dx'd with POTS, too.