update since swine flu vaccine

[rikki03]

It has been almost a year since my autonomic dysfunction nightmare after the swine flu vaccine. I have improved tremendously - still fatigued, short of breath at times but not like before....and have a faulty temperature regulatory (need to wear something on arms at all times even in the summer) but I am walking....no more burning sensations throughout my body and the shortness of breath is not all the time... why I still cant go up my flight of stairs without being short of breath is problematic... back in October 2009 did not know if I would survive but I have come a long way.....this has been very hard for me since I am a physician and was told that it just panic attacks and the doctors in my community just pushed me a side....and I am trying to restore my faith in the medical community.....I got in the pool and survived ...no longer have to change the thermometer in the house every minute to make sure it is 78 degrees exactly.....what a relief.... now if I can get off my blood pressure meds and  exercise 30 minutes on a treadmill is my goal...also need to figure out what I can and cannot eat....get short of breath after eating....I think hot foods might be bad...

[Heiferly]

We're always thrilled to have good news on the forum!!  Thank you so much for posting your update and letting us know about all the progress you have made.  I think there's a selection bias on the internet at times, whereby people who improve tend to stop posting ('cause they're understandably busy out living life to its fullest and not as focused on their illness as they once may have been) so we get a skewed viewpoint toward the negative side of things.  As such, you have my deepest gratitude for helping to remind our community that progress is quite possible!!

I am sorry to hear about your struggles getting help within the medical community as well.  Unfortunately this is an ongoing problem within the field of dysautonomia, and progress on this front seems to be frustratingly slow.  As vbc2000 alluded, there seem to be some geographical trends, but they're not hard-and-fast rules and in my experience you can find gurus and goons even within the same hospital system/department sometimes.  My greatest asset has been doing my own research via pubmed, google scholar, and interlibrary loan.  In the end, I've ended up purchasing quite a few medical textbooks related to the field (though they can be rather costly) because it's so much more convenient to have my own hard/digital copy, but many I at least checked out of the library initially to make sure I would be getting my money's worth.  Amazon.com's preview feature is also handy when available.  I would likely give my left foot for open access to any/all peer reviewed journals, but have done pretty well making do with getting my hands on articles despite lacking infinite funds/access.  

I've learned that a doctor whose ego can't stand up to a highly-educated patient isn't worth my time.  I cannot expect any of my doctors to have read even a fraction of the material on dysautonomia that I have read, but I must insist that they will listen to the expertise I have gained from my studies, and accept any material that I pass on which I feel is vital to successfully treating my illness.  If this raises a doc's defensive hackles, s/he has no business trying to take part in my treatment; it's plainly irresponsible.  

It sounds as though you've got a pretty good handle on your condition.  The food thing is such a bugaboo.  I wish I had some sage words of wisdom on that one.  For some reason my "food issue" seems to morph from year to year, such that every time I think I'm getting a handle on it, it evolves into a different problem.  Summer seems to be the season when my body decides to reject whatever diet last seemed to be working, which I guess makes sense insofar as that's the season when everything dysautonomia-related tends to go haywire for me due to intense heat-intolerance, but I still don't understand why it would be changing every year.  Maybe just the progression of the illness?  I guess I just need a larger sample size, LOL.  Give me another decade and I'll have it all figured out!

Please continue to keep us updated, and know that we're all thrilled to hear you've made such progress so far!  Cheers!!!
-Heiferly.

[tonyad]

   This Awesome news to hear you are getting better even though it is not by leaps and bounds but steadily at any rate!

    I am Not a big fan of any kind of shots. No not because of the needles....Lol
I think that...well I know that the derivatives that are in them.  But, tha's just me :)

   Rikki, you were so very ill. i can relate to the part about walking up the stairs and the eating part...But let me ask anyone do you loose breath as well when talking? And does your mouth and Jaw start to hurt? I guess thats the best way to describe it...?

    I do love to Talk.....Ha,Ha,   But get so irritated when I get short off breath sometimes. It is a quite parculiar Sx don't you all think?  Curious as to what you all have to say about it  :)

   And global..I love your Mood Status!

Take Care,
~Tonya

[vbc2000]

I'm glad you're doing better :)  I have been very lucky with doctors taking me seriously and getting a definitive diagnosis from the tilt table test.  I wonder if it depends on what area of the country you're in?  I'm in NY, not far from Manhattan, but something tells me the bad docs are all over.  To hear another doctor say they are disappointed in the medical community speaks volumes and makes me sad for all the people who suffer for years before finding a good doctor.

Your post (and others here) also makes me glad I am allergic to flu shots (it's the eggs)!  I think if I weren't, I would have gotten the swine flu shot because of all the panic.  

Good luck with the rest of your journey :)
Stephanie

[globalhiking]

Hi there,

It is nice to see that you have come on leaps and bounds since 2009 :-)

I can relate to your frustration with the medical profession - I was also told that it was anxiety/panic attacks causing my large increase of 88bpm on the tilt table test (from 75 to 163) because my BP did not crash.
But shortly after that I found a marvellous cardiologist at another hospital (and my GP is also very good and supportive), which has restored some of my faith in the medical community.
Hopefully you will to...

What to eat is also something that I struggle with.
Sadly it can take a while to get answers.

I wish you all the best with your health, and hoping that your progress stay permanent.

:-)