P.o.t.s.
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July 6, 2010 at 1:05 pm
I saw my 6th neuro last week in the Peripheral Neuropathy clinic at Northwestern here in Chicago. (They have been doing the stem cell transplants). I was there for 3 hours, met with the doctor, the nurse, a nutritionist, a physical therapist, and a social worker. I was very impressed. They were very thorough and caring. I finally felt like I was in the right place after 7 months of searching for some assistance.
They are going to do a few more blood tests, but I think my preliminary diagnosis is P.O.T.S. (post orthostatic tachycardia syndrome?) I believe this falls in the autonomic category of nerve dysfunctions. Does anybody know anything about this? It has to do with low blood pressure and heart rate accelerating with changes in position. No cure, but just treatment for the symptoms.
I think that I may have had this condition in a dormant state, and the vaccine triggered this in a more full-blown status. I have had vascular migraines for 20 years, dizzy spells, mitral valve prolapse, etc. My dad has a lot of heart/vascular problems and so did my grandmother so I think there is a genetic component. The doctor did not want to admit that the vaccine was the cause of this and was asking about viruses, etc. All I know is that even if this was dormant, I was 100% fine before the vaccine. It makes me angry when doctors try to discount the possibility that vaccines can harm people or trigger autoimmune conditions. I have never been given a definitive diagnosis of GBS. I wonder if I had a mild case and then it turned into the POTS. Not sure where the loss of reflexes and arm weakness came from.
Anyway, you all have been very supportive, but I may have to go find a POTS support group.;) Just wondering if anyone has had POTS at all. Thanks.
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July 6, 2010 at 4:06 pm
Hello. Sorry about the P.O.T.S. I have heard about it, but not in depth. Yuehan knows or knows where you can find out. Check the thread right below yours. Yuehan is very knowledgable. Love, smitty
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July 6, 2010 at 7:26 pm
Aw, shucks, smitty, now ya’all gone and ‘mbarresed me…..
I sent Jessicah a Pm.
Nothing particularly secret in it. Here is what I found:
[url]http://www.ehow.com/how_5590821_treat-orthostatic-tachycardia-syndrome-pots.html[/url]
[url]http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm[/url]
[url]http://www.potsplace.com/[/url] (No, it ain’t about smoking weed!)
and, finally:
[url]http://www.dinet.org/forum.htm[/url]
For the Crossword puzzle players out there- “Dysautonomia”
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July 6, 2010 at 10:43 pm
Didn’t mean to embarass ya’ll, however, your posts are very helpful to me & I’m sure many others. I have learned lots of stuff. Thanks, smitty
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March 20, 2017 at 11:20 pm
I had a bad reaction to a vaccine and thought I had a mild case of GBS as well. No I feel like I have symptoms of POTS. How are you doing now? Did you ever find any answers about POTS?
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March 21, 2017 at 12:42 am
The following article is a good discussion about POTS and was updated in January 2017:
https://rarediseases.info.nih.gov/diseases/9597/postural-orthostatic-tachycardia-syndromeWikipedia has more good info here:
https://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome -
May 4, 2017 at 2:45 am
Try exploring the website Sanevax.org; there are many accounts of POTS related to immunization.
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May 4, 2017 at 12:13 pm
SaneVax is an anti-vaccination, i.e. quack, site. Here is Dr. Gorski’s (Orac’s) take on them:
Quoth the anti-vaccine group SANE Vax: Beware HPV DNA in Gardasil!
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September 23, 2017 at 5:06 pm
My daughter got POTS within 2 weeks of her 12 year old vaccinations and 8 months later was diagnosed with CIDP…now that we know what CIDP is we realize she probably had CIDP before the vaccines but the vaccines definitely changed her from having purely motor problems to having severe autonomic problems virtually overnight
Gareth Parry’s article makes me feel sane in a world of physicians who will not admit the vaccines are related to her POTS, even though they asked me her recent vaccination history immediately after doing her NCS and EMGs
http://www.gbsnz.org.nz/__data/…/Vaccination_in_patients_with_CIDP_and_GBS.doc -
November 5, 2017 at 11:10 am
I have POTS related to ehlers danlos syndrome.pots is a type of dysautonomia. dysautonomia effects up to 3 million people in the us. http://www.dysautonomiainternational.org/
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