McBlonde

Welcome!! It's amazing how many of us Type A, independent, totally fit people that POTS strikes down right in our prime for no apparent reason! It also amazes me how many physicians at big, major medical facilities have never heard of POTS. I hope you can find some answers!

I used to have bad "panic attacks". One Klonopin at night completely stopped those. Before Klonopin, I did it all, including behavioral therapy. I remember the therapist saying "what's the worst that could happen? You won't die." Well, I had a major "panic attack" while shopping and I tried to let it pass, but the worse did happen and I went into a full seizure of unknown reason and had to be hospitalized. Like I said, the Klonopin stopped that.

On the other hand, 2 strong cups of coffee in the AM helps me feel better.

POTS is crazy in it's contradictions!

Glad to hear today is better! I bet it was the aftermath from the surge of adrenaline with the little girl that was lost. Glad you were there to help thought!

Good luck Naomi!

Actually, with SSDI, the type of info Brye is talking about is what they want. Being clinical, this was hard for me to get into my head. I kept thinking in terms of symptoms, but what SSDI looks at is how POTS affects your activities of daily living.

I used to be obsessive with my iPhone HR and then I bought one of the BP monitor that also attached to my iPhone. Then I was hospitalized from nov. to New Years- I'm pretty good at recognizing my symptoms so I don't use it as much. I would say its a good idea to have one. I still check my BP every morning- before meds- and that gives me a hint. I feel horrible today and woke up lying down with 50/33 and 168.

My guess would be that she will use it less as she learns her cues better. That said, I'm still bedbound so once I'm able (EVER) to get get up and walk and exerciseim sure I will use it all the time again.

Jen

IPhones has a BP app? Do you know the link? I'd like that... So easy to walk around with your phone!

Yes.... any kind of stressor can cause one to become symtomatic be it physical or mental.. I call it to my flight or flight response being kicked into overdrive, after that, the symptoms follow. I don't know if everybody is that way, but that's how my body responds.

I'm sorry, Libby! I understand. (((Hugs)))

I'm bumping this thread because it's about the low-flow vs high flow questions we have in the current thread. It sounds like to me by reading this that even if you find out, it doesn't matter, because, so far to date, classification has not helped one bit in determining treatment. I am so disappointed to read that. If that's the case, what good does it do to continue test after test?

I know what you mean. I crave sunlight. I attributed it to my Vit D levels being so low. My endo told me that the non-pharmacy prescription to get your Vit D levels back up to normal is 15 minutes in direct sunlight every day.

Count me in too with all of the above symptoms after a pre-syncope_{" spell". It's crazy sounding, but I when I used to actually go ahead and faint, I would feel better when I "woke up". For some reason, my body stopped fainting but now I have all the lasting symptoms after a pre-syncope spell.}

That is WONDERFUL news to read first thing this AM! Congratulations! If you can, keep us updated. We are all pulling for you!

Does that mean if your symptoms are helped by vasoconstictors such as Midodrine that you have the opposite of "low flow" POTS and what is that type of flow called? Thanks!

On the cup half full side, that's great that you won't have to worry about maintaining your salary for 2 months! I am so glad you got have an appointment with the employment lawyer for further advice! Maybe your employer is attempting to show "reasonable accommodations" before they do something. I hope the lawyer gives you good guidance!

As far as me, I guess I was still in some form of denial. I had worked at the hospital for many, many years. I always took out and paid for the best insurance... health, disability, life available. I did that in case I ever needed them, but instead of going on short term disability at that point, I was convinced if I just "took it easy" "had less stress in my life" etc etc etc I'd get "my life back". It was the whole....try harder, work through it attitude. Of course, POTS doesn't not work that way. For me, I just had the same bad symptoms of POTS at a different (albeit less stressful) job that also did not have the short term and long term disability I had previously had. If I had known then what I know now, I would have viewed filing short term disability as something I could do and then go off of if I got better. Instead, I viewed it as giving up on getting better and that was crazy!

Oh.... the reason I suggested getting advice from an attorney was not with the intention to sue, it was so that you would know your rights under your state law. If you have the opportunity for short-term and then long term disability at your present company would your income be more than working part-time at a new company? I made a HUGE mistake not doing that when I got sick when I worked as a hospital executive where the short and long term disability benefits were top notch. I chose instead to take a "less stressful" job and push on.... big mistake in my situation and every situation is different. I just wanted to share my experience so that you weighed all options.

I am so sorry you are going through all this!!

I forgot to add.... the way I found out about the HR app for Iphone is from my doctor who is a long distance runner. It is very accurate, more so than my watch. I've checked it against the hospital's machine when I had the opportunity. Also, it's free. Here is the link in case anyone wants to download it. http://www.azumio.com/apps/heart-rate/

That's exactly what I was trying to say but couldn't get out, lol!

The only thing I can do to get my heart rate down after it goes up like that is to recline. It sounds crazy, but until I got my HR app on my IPhone, I had no idea that it was my HR that was causing my symptoms. I thought it was my BP dropping. My heart rate was going sky high when I was sitting in the car and I didn't even know it! The phone app has been a life saver for me.

My heart just breaks to read your post. The situation is SO unfair. That said, sadly, there is no guarantee that it is illegal. It really depends on your state. I live in a right to work state and in those states the law allows you to fire anyone for just about anything. I would strongly advice you to seek the counsel of an employment attorney that is fluent in the laws of your state before you do anything. The economy is still bad and the job market it a tough one. The good thing is that it sounds like you still have short term and long term disability options with your current employer which you wouldn't have if they let you go.... Before anything happens, check out your legal options, so at least you will know prior to talking to HR. One thing I just recently had to remind my husband....HR is there to protect the company, not to help employees. It didn't used to be that way so much.

Here is a recent example in a right to work state. A manager was dx'd with cancer and needs a liver transplant, had surgery and was recovering....Used up all his vacation days, sick days, etc. Went on FMLA. The plan was to let him go when his FMLA days ran out. Fortunately, he was able to come back to work before that happened and so far, he has kept his job. I don't know how he makes it to work each day. If they had let him go, he would have lost his insurance that day at midnight. Of course there is COBRA, but COBRA payments are pretty difficult with no salary.

It may not be ANYTHING like that in your state... but I just wanted to warn you to be careful just in case. I really thought ADA would have protected the above employee... I was wrong. Hopefully, a competent employment attorney can give you good advice. Hoping for all the best for you!!

Well, wow.... I have not seen CFS categorized like that... I'm almost 100% of that list. I always thought CFS was associated with post viral, which I never had.. Interesting.... So, under that criteria, POTS is under the CFS umbrella?

Resting 70s - 80s

I catch myself holding my breath, too!

The guy is very well spoken. He could be a great spokesperson for Dysautonomia.

A Most Excellent Dysautonomia Spokesperson!

That was such an excellent video by Jeff! Brittany had such a light! She's gone way too soon.

Pneumonia was the primary cause of death. Complicaed by..dysautonomia..//.the timing of meds,hot bath/shower/anemia? We probably will never know now. But it's a life lesson to remember if you are ill, be especially careful. Let someone know if you are taking a bath or shower, etc etc.....

Perfect description, Issie! Many different paths OI/Dysautonomia takes.. Many different needs of the members at different times in our journey! Throw in a bunch of Type A persoanlities from all over the world and Boo-Yaa... a great, smart, diverse forum that also doses hugs and encouragement when needed!