Help Please!!

Hi All

I am wondering if anyone out there has the same symptoms as me. I can collapse due to heat. This can happen in any situation, and seems to revolve around the back of my neck. My neck and head are always very hot. I generally cannot wear coats and will be out in the snow in a t-shirt as if I wear a jumper I will pass out. The rest of my body may be cold but my neck and head are always over hot. So if I go into a very hot room (eg doctors waiting room) I am just waiting to hit the deck! This will come on very quickly and I am usually in bed for at least 1 week afterwards recovering.
I am in the process of tests but the initial findings have been that I have the diagnostic criteria for POTS. I cannot drive or go anywhere by myself.
Another query, I have recently heard of a girl who kept getting these syncopal episodes having a pacemaker fitted and apparently now she is fine. Have any of you have that done??

Yvonne

[Heiferly]

Research in peer-reviewed medical journals shows that pace makers are not effective treatment for POTS.  However, if your problem is an underlying cardiac issue that is misdiagnosed as POTS (different cardiac problems can cause syncope), a pacemaker might fix it; likewise, if you have cardiac problems in addition to POTS, a pacemaker might help with those symptoms, though not eliminating the POTS.  

Heat intolerance is a common trigger for syncope in POTS patients.  Good luck getting a diagnosis; I hope you do well with all the tests.  In the meantime, it might be helpful to read more about POTS to familiarize yourself with it--articles written by the renowned Dr. Blair Grubb are a great starting point.  

Best wishes!!

[KinOhio]

My 17 yr old daughter began having many seemingly unrelated symptoms about 2.5 years ago. If you go to POTS Place at www.dinet.org, she had about 90% of symptoms listed, no seizures.  She was diagnosed with POTS 03/08.  Her worst symptoms were from gastroparesis. We found she also has dietary fructose intolerance and delayed gastric emptying. Research has shown there isn't a correlation between the gastroparesis and POTS, but now that she is being treated for the POTS, all her symptoms are much less severe for gastroparesis.  She's had to make some adjustments but is much better with treatment.  Best wishes for your good health

[Heiferly]

When you say "research has shown there isn't a correlation between the gastroparesis and POTS," are you referring specifically to your daughter, or to published studies you have read?  If the latter, do you have citations for or links to those studies by any chance?  I ask because Dr. Grubb does mention gastrointestinal symptoms as a frequent complaint in POTS patients in several of his writings, and I'm wondering if this is a controversy in the medical community.  It would be great if we could amass more information on this here in our group!

[michelle199]

I have Neurocardiogenic Syncope and heat brings on attacks like this. After you pass out you feel like you have a hang over for a week.

[KinOhio]

I'm sorry for my delay, I haven't been logged in for some time. Regarding gasto issues, I did a general google search back at diagnosis time, as well as a medline search on journal articles.  The concensus with physicians is that as many normal people have delayed gastric emptying issues as pots patients, and they could not correlate these two things definitively.  My daughter has new symptoms lately, she's seeing a neurologist, has tests scheduled for January. I'll try to remember to update this post regarding those symptoms and will also ask about the gastroparesis at her next visit. Just as a note, it seems that her anxiety and stress has increased with new symptoms and this has exacerbated all her symptoms.  
Best of luck to you.

[CHRISTYDRAKE]

My 14 year old son also has dysautonomia, along with it gastroparesis.  While his GI doctor in St Louis wouldn't even test him for gastroparesis, his doctors in Ohio had him tested because it is not uncommon for someone with autonomic dysfunction who is experiencing GI problems to have gastroparesis.  His main dibilitating symptom is nausea.  Even taking the gastroparesis medicine hasn't helped with his nausea.

He has no reflex action on the right side of his abdomen where he experiences abdominal pain.  We are going back to Ohio in January for more testing.

[Heiferly]

Using GoogleScholar, rather than the ordinary Google, I was able to turn up some interesting finds regarding gastro issues in orthostatic intolerance syndromes of dysautonomia (such as POTS):

Here's a link between cyclic vomiting syndrome and autonomic abnormalities (reading the abstract shows tests results consistent with POTS ... which is mentioned specifically in the full article, though I can't offer a link to free public access to the full text of the article.)

http://www.ncbi.nlm.nih.gov/pubmed/17325552

Entitled, "Evaluation and treatment of autonomic disorders of the gastrointestinal tract."  Pretty much speaks for itself.  (Again, you need to have subscription access to the journal; for those interested but without university/hospital library access, talk to your local reference librarian about inter-library options to get access to articles.  There are almost always fees for copies of journal articles obtained from other libraries, but costs are generally less than buying the article outright from the journal itself.)

http://www.ncbi.nlm.nih.gov/pubmed/15088266

This study:  "Gastrointestinal symptoms associated with orthostatic intolerance," concludes that "Pediatric patients with chronic upper gastrointestinal symptoms may have underlying orthostatic intolerance. In patients with upper gastrointestinal symptoms and orthostatic intolerance, treatment of orthostatic intolerance may result in resolution of gastrointestinal symptoms."

http://www.ncbi.nlm.nih.gov/pubmed/15795588

Also:

http://www.ncbi.nlm.nih.gov/pubmed/15944872
http://www.ncbi.nlm.nih.gov/pubmed/15710782
http://www.ncbi.nlm.nih.gov/pubmed/10560597