Long time managed, now severe new symptoms

[g8rvet]

Has anyone been pretty well managed for a long time and all of the sudden with no significant medical changes had sudden onset of extreme dysautonomia symptoms that are unusual for you?

I have had autonomic dysfunction for years and years, but finally had work-up at Mayo 9 or 10 years ago (after the  long battle to get to that point).  Have periods that are better and worse-- my symptoms are primarily hypotension and dizziness, compensatory tachycardia and chest pains, and some tingling and numbness.  It seem to often triggered after things like surgery, bronchitis, stress.  I was on midodrine originally, but have found I do better on phenteramine and have been fairly well managed on a low daily dose for years. I was diagnosed with Celiac Disease and have been completely gluten free for 5 years and have seen a huge improvement in symptoms (migraines and intestinal problems gone within two weeks, too).  I have had major stressors in the last 2 years, and have been on buproprion for about a year with no additional problems.  The last five days I have felt drunk-- or maybe more like hungover-- or somewhere in between.  I haven't had anything to drink.  I can't concentrate.  It is hard to even type this at normal speed and I keep making mistakes.  I feel like my limbs are heavy and the edges of my vision are kind of dark and fuzzy.  It is hard to focus.  Numbness and tingling are worse than normal.  The other strange thing is my dizziness is always positional and improves when I lay down--- it doesn't now.  I think the best overall description I can come up with is that feeling before you do under gas anesthesia.  I can't work and wouldn't dream of attempting to drive.  Any thoughts or ideas?  Thank you in advance.

[LivingInHope]

You're welcome.  Please do let me know- send me a private message with an update!  We are really going through the valley with my sibling right now and a cardiologist is trying to get them into Vanderbilt.  I also have dysautonomia but it is not affecting me as badly as my sibling.  

[g8rvet]

I will look at that. I have done well on it for quite a while-- but as this seems to go, something helps a little, but may cause more problems in the long term.  Thanks so much for sending that information.  I am trying to schedule an appointment with a doctor in Pensacola or have a phone consult with one I found in NY that does those to see if they might have some new ideas.  I really appreciate you sharing this with me and will let you know if there are any exciting new ideas that I find.  

[LivingInHope]

Found that phenteramine, an appetite suppressant, has potential for dopamine neurotoxicity:
http://www.ncbi.nlm.nih.gov/pubmed/9776127

[LivingInHope]

You're welcome!  It does help to know we're not alone.  I recently learned of another sometimes connection between two things and I hope to post a journal entry on it.

[g8rvet]

It is great reading the posts and getting some new descriptions I can use with doctors to explain what I am feeling.  Thanks so much for your input.  I will definitely follow up with it.  Thanks so much!

[LivingInHope]

How do you describe a feeling is sometimes a quandry.  Like after I eat a meal and my head feels like it has air pressure turned up inside it or something- do you know what I mean?  

Since it is your periphery of your vision you are speaking of, if that were a constant, I'd definitely think you should get a field of vision test with your opthamologist (or if the optometrist does them) as well as look into the endocrine angle to rule out pituitary tumor.  Because peripheral vision is the first to be affected when vision is affected with a pituitary adenoma.  The moderator, a lady with history of pituitary tumors, I believe has P.O.T.S..  Also, I was doing some reading fairly recently that made it look time there is a possible connection that can happen.

[g8rvet]

Thanks.  It is more like a "darkness" or a fuzziness on the periphery of my vision.  Like when you were a kid and you spun in a circle and the edges of your vision were the last thing to come back into focus.  Isn't it crazy with this whole syndrome how you try so many things to come up with ways to describe things.  It would be nice if I could say "I have focal pain in the upper 1/3 quadrant of my abdomen" instead. :)

[LivingInHope]

Glad you are feeling a bit better today.  Still curious about your vision though- I know about greying out or even whiting out of vision in my own case, but you mentioned edges of your vision- has that cleared up?

[g8rvet]

I guess that one of the problems with the years of dealing with autonomic dysfunction. I tend to wait as long as I can tolerate now before seeking medical care.  Childhood at ER with tachycardia and chest pains that were never diagnosed.  Years of problems in adulthood with problems that were treated as "stress" then mistreatments that made the symptoms much worse.  Even now, when things have gotten bad, if I end up with a doctor that doesn't understand, it is either like talking to a wall or trying to convince them I am not just crazy.  Luckily, I am a veterinarian, so I can "speak doctor" with them most of the time.  All of the symptoms I am/was having can be related to dysautonomia, so I was thinking it may just be increased/new symptoms.  Luckily, my cognitive functions seem a little better today, but a full work up will be next if there is no additional improvement or resolution.  Thanks.

[LivingInHope]

Time to go in to an ER, or if you feel it isn't quite that bad, a neurologist and see about an evaluation and possibly, a brain MRI.  If it is your peripheral vision that is having a problem, have your primary care doctor look into ruling out a pituitary tumor- different kind of MRI- dyamically done pituitary MRI.  I'm sorry you are having a major problem after all these years and hope you get answers soon.