HopeSprings

Thanks so much for sharing your lecture - it was very informative! I was also going to ask about Hyperadrenergic POTS and where those numbers came from. The number given by POTS researchers to diagnose HyperPOTS is quite lower than lab reference range for abnormal standing norepinephrine levels. I never understood looking at my lab work why the numbers would be considered normal by the lab, but not the POTS Doctors. I think work needs to be done in this area to clarify. It's interesting about HyperPOTS possibly causing the sensory symptoms, sensitivities, MCS, the pounding heart all day - that could explain a lot for me. This is the kind of lecture that needs to happen in medical schools so that soon-to-be Doctors have knowledge of POTS. I wonder if it's taught?

I should have posted the main page. There are other videos from that conference with Doctors speaking. Here's the link:

http://tvworldwide.com/events/fda/130425/default.cfm

I assume no contrast was used or you would have mentioned that. This might be a long shot, but I recently learned that MRI can disturb inner ear fluid. Since the vestibular and autonomic systems work together, I wonder if disturbing one could set off the other. Sorry you're feeling so badly - I hope this passes quickly. Let us know what happens with the MRA results.

More info on that if anyone's interested:

http://www.dailymail.co.uk/health/article-2040946/MRI-scans-CAN-make-dizzy-Magnetic-fields-disrupt-fluid-inner-ear.html

Yes, anywhere in the country is fine.

One person had a concern about anonymity - the mailing is being sent by DINET and no personal information will be included, so no worries there! Here's a link to the page that shows the brochure and how to send a request:

http://www.dinet.org/brochures.htm

Corina - I will get in touch w/Rachel about this and get back to you via PM.

I posted a little while ago about sending informational brochures on POTS to Doctors of your choice. The feedback was positive, however, the response was a bit less than hoped for. 8 members sent requests, with a total number of 22 Doctors to reach out to. Thanks to those of you who sent requests - mailings will begin soon.

It was suggested that a cover letter be included with the brochure addressing some important issues and we agree. We've come up with a letter which will be printed on DINET letterhead and included with each mailing. I'm really happy with it and hope you will be too. I hope this inpires more people to participate. You can get information on how to send a request from the DINET homepage. I'll post another update in the future. Thanks!

Here's what the letter says:

Dear Physician,

Greetings from the Dysautonomia Information Network. We are a nonprofit organization whose mission is to raise awareness about dysautonomia. One of the more common forms of dysautonomia is a debilitating condition called Postural Orthostatic Tachycardia Syndrome (POTS). POTS is observed primarily in young women, but also affects men, children, and older women.

Because many physicians are not familiar with POTS, numerous POTS patients wait for months or years to be properly diagnosed. For some patients, the symptoms of POTS can mimic anxiety disorders, which has frequently led to inaccurate psychological diagnoses, while leaving a very real physical condition untreated. This has been a source of great frustration and discouragement for many dysautonomia patients.

We are reaching out to physicians with the hope of raising awareness of this condition. Enclosed please find our educational brochure about POTS. For more information, please visit www.dinet.org. We also have an educational documentary, “Changes,” available online at

If you have any questions, or if we can be of assistance to you, please contact us. We can be reached by email at staff@dinet.org or through the mail at PO Box 147, Slayton, MN 56172.

Thank you for your time and for the care you give to patients.

Sincerely,

The Dysautonomia Information Network

These are some of the best descriptions I've heard about the cognitive, sensory and perceptual symptoms. They put into words so well what it feels like. Later in the video they talk about crashes, which I'm sure many of us can relate to. Orthostatic intolerance is also mentioned. If you have some time to watch this, especially the first panel of speakers, I think it's worthwhile. See if you can relate.

http://www.tvworldwide.com/events/fda/130425/globe_show/default_go_archive.cfm?gsid=2246&type=flv&test=0&live=0

Thanks, I look forward to reading this on a better day when I'm feeling less brain fogged! lol. And "brain" fog sounds so mild, doesn't even capture how bad this is. It can feel like a mild-moderate case of alzheimers if such a thing is possible. It really is one of the worst symptoms.

Thanks Naomi. I too thought it might not have anything to do with the birth control pills, but when I stopped them, I stopped getting that improvement in my lightheadedness during my period. I only get the improvement while on birth control. I don't get it....

Ohhh, I get you. I would ask the GYN how being on the pill differs from your natural hormones. Maybe being on them keeps things more level and you get less of a drop during your period.... or something like that. I'd still love to know why I do better the week before - I would bottle and take whatever it is.

I feel less lightheaded the week before my period and I don't take anything. Hormonal fluctuations improve or worsen POTS symptoms for many of us. Maybe it has nothing to do with the BC pills, but you could still ask your Doctor.

I agree with the points made too - having this illness confused with psychological problems is upsetting and delays diagnosis and even doctors who are familiar with POTS don't often understand how disabling it can be.

I don't take anything for the burning in my feet. It happens at night when I'm lying down so sometimes I'll put cool wet towels on my feet. I also have pain in my legs and for that I sometimes use Lidoderm patches. Lidoderm cream was another suggestion for the burning - you could ask about that.

Since the psychiatrist is familiar with POTS - maybe that would be a good place to get info too. So, they know we don't need to see them - mainly.

Issie

LOL. Love that.

I've had burning in my feet since the beginning. I also have migratory symptoms - hot spots that come and go, tingling and numbness, buzzing in different spots that stay for a while, then leave etc. In the last few months the burning has spread to the palms of my hands. I asked my neurologist who specializes in neuropathy if symptoms can do this in SFN - change, move, come and go and he said yes. And POTS can definitely be related to SFN. I'd find a good neurologist who specializes in neuro-muscular disease.

On DINET's homepage is a feature which allows you to have a brochure on POTS sent to the Doctor of your choice. I have in front of me a box of brochures and would love to get them out. Will you help? Is there a Doctor who you think could use an information pamphlet on POTS? Whether it be the well meaning Doctor who tried, but couldn't figure it out or the one who told you it was all in your head, let's get the information out there. It may take a while (depending on response), but each and every request will be honored. I'll post an update in the future to let you know how many Doctors we reached. Let's do this!

I know - it's amazing how she can capture through her writing the exact dysautonomia experience. She says everything I think and feel, but can't always put into words.

Many of you probably follow this blog, but for those who don't this might possibly be the best thing ever written about invisible illness... especially if you appreciate snarky and sarcastic. Made me feel better anyway.

http://bobisdysautonomia.blogspot.com.au/2013/04/am-i-sick-enough-for-you.html

These poll results are really sad. This needs to change.

My understanding is if you are looking for autonomic neuropathy you need the sweat gland one.

It took years and many dismissive Doctors before I was finally diagnosed. It was during an echo-stress test when I mentioned to the cardiologist that I feel better lying down. He thought of orthostatic hypotension and took my bp lying down and then asked me to stand. Since I was still hooked up to the monitor, I saw that as I sat up my heartrate went from the 70's to the 110's. I thought to myself, I don't think that's normal, but didn't say anything. Once I stood up the nurse took my BP and said it dropped 30 points. The Dr. diagnosed OH, suggested Florinef and sent me home. I then looked up orthostatic hypotension and found all the info about dysautonomia and POTS, got a BP/heartrate monitor and started testing myself. I found no OH, but POTS instead. I think because my BP is hard to find (it takes many tries because they say they can't hear it - whatever it is), the nurse made a mistake about the OH. Thank goodness for that mistake because if it hadn't happened I would have never been clued into dysautonomia and would probably still be sitting here undiagnosed. This at least pointed me in the right direction. I then went for autonomic testing with a specialist and he diagnosed POTS.

Chaos - would you mind sharing your results?

Bump

Lastly nursing homes and hospitals are full of people who are forced to endure months of bedrest with minimal upright activity. None of these patients exhibit POTS symptoms - you can ask your local hospital aged care doc or doctors at nursing homes.

Yes, this was always a question mark for me too. There should be way many more POTsies if bedrest was the cause. Levine said somewhere (I read) that all those POTS patients had one thing in common "something put them to bed," but I've been on this forum long enough and have read many onset stories - most hadn't been in bed when this hit, most were actually quite the opposite, very fit and active.

Large fiber neuropathy can be diagnosed through EMG. My small fiber neuropathy was diagnosed through skin biopsy.

YES! Nothing as serious as yours, but I've also been sick with back to back stuff. My daughter had a little cold that took her 2 days to get over, then I got it really bad and was sick for 2 weeks. Just as I was getting better from that, she developed fifth disease and I guess I caught it because I started getting throat and gland pain. Within days of that, I started again with congestion and coughing and I'm still fighting symptoms. It's been almost a month and I'm still sick! Where's the immune system when you need it??