Noreen

With number 4, I think the point is best served if you could tone down the color on the stoplight from black to a light to medium grey so it is not so much a focus. Under each of the heart beat lines - the red one for instance - a brief line saying 'the PoTS heart is not happy, this is hard work. the yellow - 'the PoTS heart appreciates being cautious' - the green - the PoTs heart feels safe.' Not everyone would know you meant an EKG line. Wouldn't this image have to be on the back of a t-shirt anyhow given that most of the questions are due to having to squat in line, etc? A few more words would give them something to read.

Here's a link to the NY Times article on mast cell http://www.nytimes.com/2009/06/07/magazine...cell&st=cse

In theory, it has a cardio tissue protective factor - http://www.springerlink.com/content/y6283706v72n1222/

For a non medical option, you might try your local nurses' association and ask if they could put you in touch with anyone who practices Healing Touch. I took a course in Therapeutic Touch at a hospital from the Nurse Practitioner at the pain clinic who was also certified in Healing Touch. It was extremely interesting. When my mother was in the ICU in a Catholic hospital and they could not get her pain under control, I asked for a nurse with healing touch credentials. The nurse volunteer who responded only had Reiki experience but I welcomed anything after 3 hours of saying the rosary. It worked where nothing else had. It was interesting to watch her surgeon, a gentlemen of experience, as he watched how it gave her some relief. Just throwing ideas out there in hopes something eases your pain. noreen

I am so sorry you are in such pain. I agree with the others. You should be under the care of a pain management specialist for this. Pain should be treated. there is no reason for you to suffer like this. We are pulling for you. {{hugs}} noreen Edit - your post appeared after I answered. If I were you, I would consider asking for Oxycontin 10 mg - it doesn't have the additives most of the other pain meds have and lasts 7 hours so you don't have the ups and downs. Add'l pain meds can be prescribed for breakthrough pain, if needed. Addiction is not an issue if properly managed. I have been on it for years and have managed to lose the pain meds when I did not need them (as in no disease flare). Actually, now that I think about it I haven't taken one in over a week. It is a great medicine for those in need - remember people in pain take pills to function while addicts function to take pills.

I'll call my cardio for the event monitor my GP wants after looking at my BP printout if you'll call yours for this new bradycardia of yours. You really don't know if you have a potassium imbalance, electrolyte issues or whatever else it could be. We all know how much we don't want to go to doctors but they are the only ones who can order tests that can unearth problems. Possibly they will say just reduce the bb and you'll feel better - that wouldn't be so bad. You never know what blood tests might reveal http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2694776/

I'm with you there. I call it my Algernon Syndrome as I try to get the MDs to get a clue. (Remember the Edward Albee play "Flowers for Algernon")

Coolsport.net has a smaller vest for those weighing 85 to 110 lbs. "The Kids' Vest is designed for older children and has the same cooling capacity of our adult Cool Vest Lite model. It has an approximate weight of 3.8 pounds. (one size fits all on both the Junior Vest and Kids' Vest.)" Since the cooling capacity is the same, why not give them a call and see if it will work for you?

I am so sorry this has worked out badly for you. I had been keeping cannabis in the back of my mind as a potential treatment so I appreciate your post. Of course I would probably have ended up like Sophie and not been able to find any. Now I know not to waste my limited energy. I hope you recover soon

Glad you're well and educating us as usual.

{{{{{{Bella}}}}}} May wonderful memories ease your pain during this difficult time. You and yours are in my thoughts and prayers. noreen

Wishing you joy on your parenthood journey.

Was that not a poor script? Geez - it would be much more interesting to do a poor man's tilt table than the off-handed labels they tossed around tonight. {Character development was interesting, though.}

I could not tolerate Amitryptilene at all. The drug was commonly rx'd for fibro 20 yrs ago as it helped sleep so there might be more going on than migraine issues in how the drug is helping you. I have serious migraine problems. I am on 50 mg of Topamax twice a day. It does help with the frequency/severity. Generally I refer to the migraine as an evil leprechaun and the Topamax at that dosage pretty much keeps him without his hobnailled boots - I still end up taking half a dozen fiorinal a week. I've had to play with the Topamax dose to make sure it was not the cause of fatigue - it wasn't the dysautonomia was. I was hospitalized as an adolescent with migraines and have had bad spells all my life. My current diagnosis that are more likely contributing to the migraines are APS and suspected SLE. Since migraine is your more debilitating complaint, try Topamax - the dose I am on is low as a migraine prophaxylsis. After 6 weeks or so, you can then evaluate where you stand and add the blood pressure med. Make sure you are getting enough salt and fluids - when you are feeling drowsy and lightheaded it is easy to forget how much you are actually taking in. There may also be a seasonal element - for me the fall is the worst followed by the spring - it is just so hard to figure out so I feel for you. Of course this is just my opinion after years of hard experience. Good luck.

This article states anyone with autoimmune rheumatic disease which would include RA, SLE, AS< Sjogren's, etc. is at increased risk of autonomic dysfunction. It would be nice if the rheumy's are catching up. If the rheumy's start asking for autonomic testing, hopefully testing will be more widely availble. Autoimmun Rev. 2009 Jun;8(7):569-72. Epub 2009 Feb 3. Autonomic dysfunction in autoimmune rheumatic disease. Stojanovich L. Bezhanijska Kosa University Medical Center, Belgrade University, Bezanijski put b.b. Novi Beograd, Belgrade 11080, Serbia. Ljudmila_Stojanovich@yahoo.com Abstract Cardiovascular and neurological manifestations are known to occur in patients with autoimmune rheumatic disease (ARD), often in subclinical form. The term autonomic nervous system (ANS) describes nerves that are concerned predominantly with the regulation of bodily functions. It is comprised of sympathetic and parasympathetic nerves, and their function is complementary. ANS involvement has rarely been studied in patients with ARD, and studies have shown conflicting results. This may be because symptoms of autonomic dysfunction are nonspecific and extremely varied, and may pertain to several systems like the gastrointestinal, cardiovascular, and nervous. Moreover, tests to detect autonomic dysfunction are not routinely employed in clinical rheumatological practice. Another difficulty is to differentiate cardiovascular effects of drugs from ARD involvement. Previous studies on this topic found signs of parasympathetic and sympathetic dysfunction in variable proportions in patients with autoimmune diseases, between 24% and 100% in various tests depending on the methods used. Cardiovascular autonomic dysfunction is the most common type of ANS dysfunction, and was revealed in the majority of ARD patients

You mean it's not one of those things to keep us amused like when everything looks like a velour jigsaw puzzle - as long as I don't get the neck sweats (and am not out which is in itself rare) I don't worry about getting down fast.

You've almost described me to a T. Thanks for posting.

What dose and how do you take it? I have seen a few reviews stating they take 500 mg in the AM and again at night. Is this the dosing you follow?

Hi Louise - Does opening the file constitute dowloading data? It is a read only file designed to be of use in an emergency. I plan on using it as an organization tool and print out the information. If I am able to carry a netbook, I've had docs grab it and look at the info that way. a netbook is easier to carry for me then an 18 page lab report which only one doctor would want the full thing but some others might want some. It just gets real tricky carrying the water I need, the earplugs to block out waiting room sounds, the sunglasses to block out light, the 3 to 8 braces for the various joints that may or may not go out on my way due to the hypermobility issues and we haven't hit meds or medical records yet. It is a lot easier to stay home since the likelihood that the medical professional I am on my way to see will actually help me is less than 20%.

I ran across this NIH trial on dysautonomia and Sjogren's, It is currently recruiting, http://www.clinicaltrials.gov/ct2/show/NCT...%22&rank=11 Evaluation of the Role of the Autonomic Nervous System in Sjogren's Syndrome

I just ordered one too, simmy. I am going to rely on you, though, if I have any questions, pretty please.

David- I remember not that long ago that you were nervous about drivng and going to Columbia. What were your experiences like there? It seems you got in fairly quickly. thank you for sharing your experience, it would help me a great deal Noreen

I was severly deconditioned from spinal fusion therapy. I can tolerate doing a couple times a day without totally blowing my patience and tolerance quotient - if I lived alone I could push myself more and recover with come out demands on me. The arm thingy- there are poles which come up from the base slupporting the seat - they pivot and can be tightened in order to increase resistance - I guess in essence I would liken it to the arm movements with cross country skiing - you are pushing and pulling the poles as you ride the bike/ Cheap arm tricks are to use a can of soup and do ten arm curls, etc. every hour as tolerated. It is more about technique and repetition than the item. You could try it for a week and see how you do. In the past, I did Tai Chi and had wonderful results with my back with it. If there is a course nearby, that might bear looking into.

I thought it looked good especially if one were to ever lose consciousness. I, fortunately, have enough warning but with this craziness who is to know when that will change. I guess my only concern is do you have to keep buying a new one from them every few years in the event something happens. Simmy can you report back any drawbacks you notice with it. I am almost thinking it is easier to get two and send one with Social Security Disability paperwork.