Do you know of Dysautonomia?

[Sandra]

I have or am in the middle of having a eurika! moment. I have been doing some studying about some miserable issues that come up on occasion. I have my regular bag of hammers but this is something that is a whole new ball game. For example, I had to take my mom to the cancer clinic last week, not the funnest place but we're getting used to it so it's tollerable. However we ended up needing to do a couple of tests, well ends up we were there the whole day. I was just toast, the dryness, the waiting the uncomfortable chairs and crowds of people, you ge the pic. So we go home and the next day I couldn't move, I hurt so bad and was just a lump in a bed. I slept. The next day was worse, my chest hurt, I had trouble breathing and felt almost as if my heart wasn't beating enough and like I was someplace between alive and comatose. So again I stayed in bed. By the next day i began to wake up.

Upon studying why it took so long to have my mom's MUGA Scan done I found an interesting little write-up in the web page I was reading about the MUGA. It was an article about heart disease and specifically something called dysautonomia.
It talked about it being a syndrome and about POTS. Since I have viewed dysautonomia on Youtube and studied on a dysautonomia forum called DINET. This describes me to a T.

I have Addison's and i wonder if I could have true dysautonomia or is it just a similarity an Addison's patient would have as a result of falling BP due to stress, fatigue and Addiosn's? Like any stressful, fatiging day like the day at the Cancer Clinic. I feel the differance with me and a "true" dysautonomia sufferer is that mine goes away if I rest, eat some salty food, and sleep and do absolutley nothing and deal with zero stress. Anybody here know anything about dysautonomia? Thanks Sandra

[kim31072]

The treatments for Dysautonomia are a high salt diet,gatorade,increasing leg muscle stamina,rest when needed,sometimes beta blockers,anti depressants..so you are in effect treating yourself as a dr would treat..it is mainly a symptom management illness as there is no cure.

It could occur as a secondary illness to the Addisons

http://www.ndrf.org/

Kim

[Tinker]

Sandra,
I was dx with dysautnomia after chemotherapy.  My BP was very low, lost 46 lbs.....everyone kept telling me to eat, eat. eat. I just couildn't eat cause I was FULL!!  Turns out the chemo damaged my autonomic nervous system according to the oncologist and gi doc.  While I was still taking the chemo, I'd throw up food I ate 2 days before.   I felt full cause it never left my stomach.  I continued on like that for a yr after completion of chemo.

They were going to put in a peg but I tried Remaron (an anti=depressant ) and gained 10 lbs in 2 wks.  I had to stop taking it cause all I could think about was food. Now , 10 yrs. later, I'm a fattie.

The GI jerk prescribed a med that was taken off the market due to safety reasons.  ?? can't remember the name off hand as it was 10 yrs. ago.

[irish]

People with sjogrens are very prone to having issues with their autonomic system. This involved the regulation of the heart and blood pressure. It is not uncommon to have low blood pressure.

I would imagine that having sjogrens and addisons would put you at high risk for the extreme fatigue and low blood pressure following a very stressful day. Even with just sjogrens one would end up in bed for a couple of days after a day like you had. You need to make sure to drink plenty of fluids and get plenty of rest after stressful days. Also, when you spend a day where you have dry air and don't get enough to drink and then find yourself sweating(also part of autonomic issues with sjogrens) it is not uncommon to get dehydrated.

Also, you need to approach your doctors about the issues you mentioned in your post. With Addisons things are more complicated as you well know. Good luck. Irish

[4hugs]

Sandra -

I have been diagnosed with Autonomic Dysfunction including POTS. They discovered that actually before I was diagnosed with Sjogren's. There are several things that they can do to counter the POTS so, if you think you have it, you could request to be tested by neurology. They do a tilt-table test along with some nerve conductance and breathing measures. I was miserable with the AD sx but took a year working really hard to get them managed and was doing pretty well until the SJS flared up and introduced a bunch of new sx. So, the AD really can be managed, through medicine, exercise, and modifying my schedule/activity, I was able to live in harmony with the AD fairly well, with the exception of when I caught a virus or experienced an unavoidable, high-stress incident (child needing stitches, fender-bender, just life stuff). Then, symptoms would peak up but didn't take me completely out as they had prior to getting them managed. Hope you get some answers soon-

4hugs

[Sandra]

Oh it's hard  I have been limping along for such a long time on my own with this or these issues. You know how you just have a sixth sense that there is "something" elses that's going on that has not been addressed? The Addison's seems to have really gotten out of hand in the last couple of years but I think t's because I am always feeling so rough, so in turn the Addison's moves to the head of the line.
I have no way of knowing yet if I indeed have this dysautonomia but I would bet the ranch that I because of my other stuff I get the symptoms that are characteristic of it, it only makes sense. I am so tired of chest pain, and breathing issues and neck and terible headaches not to mention the abrupt halt in how my stomach and GI tract just stop functioning.
My rhuemy and respirologist are closing in on the "something" too but here it takes 6 months between or to get an appointment, my next visit isn't til the end of June. They have been doing the closing in since 2007! At that speed I hope I live long enough for them to get the whole picture.
I sure don't look forward to a year of testing but maybe the tilt table will be enough? Thanks Sandra

[4hugs]

It may be - I had all the neuro. testing done in one day (and then they did neuropsych another day for a baseline). It was maybe 90 minutes long, I think. I felt "off" for the next three days but not "totally knocked out." It wasn't pleasant - some people faint - but definitely tolerable. I failed mine across the board and even managed to throw my heart into an irregular pattern a few times during the test so, they never pushed for additional testing (they can do skin biopsies as well). I guess it was a pretty clear diagnosis. I hope you can get in for the testing soon and get some faster answers. In the meantime, www.ndrf.org is a very information-based website w/ message boards. The people there are extremely knowledgeable about the testing and treatments. Hope you find it helpful!