Strange Neuro-symptoms & orthostatic hypotension

[LowMac]

My question is somewhat detailed and I hope it doesn't appear I'm taking advantage. I realize answers I receive are general and not definitive. I've had tremendous struggle and believe Chronic Fatigue Syndrome is a strong possibility.
I have Hashimoto's caused hypothyroidism (diagnosed 2003) and am also absolutely positive I have mitral valve prolapse. In my teens an MD found a heart murmur & after follow up with a cardiologist I was mistakenly diagnosed me with Wolf-Parkinson-White-Syndrome. WPWS was later ruled out in 2001 by electrocardiogram (at age 40) but I did not get an echo to detect MVP. Despite this my symptoms shout MVP; orthostatic hypotension (brief after standing), heart skips & flutters, anxiety spells (panic attacks during youth & young adulthood), severe fatigue especially after exercise.
My hypothyroidism is well-treated (very sure of this) but symptoms continue and not likely thyroid hormone related but may be aggravated by my thyroid antibodies (I found research: thyroid disease & MVP highly related).
The symptoms I continue to experience are orthostatic hypotension (BP slightly high otherwise), severe fatigue, headaches with lots of referred pain to them (feel them throughout my body) and nerve type pains otherwise.
I had an MRI which was clear. I've had everything else ruled out as well including, low B12, anemia, systemic autoimmunity, diabetes (although I do have metabolic syndrome and non-alcoholic fatty liver). The only other abnormals on my blood labs are a slightly low phosphorous level and slightly elevated Chloride (both flagged on several tests).
Symptoms are so severe I am considering applying for disability because I struggle terribly with work etc... One more interesting aspect to this is the fact that when I turn my head to either side and tilt it back slightly, it feels like I loose blood circulation to my head (have to be careful sleeping) and I have difficulty breathing, lying on my back (I'm 6ft but only weigh about 235lb, so not terribly obese). It also feels like my blood pressure drops and my heart struggles a bit when I bare-down like when you're blowing up a baloon or having a bowel movement, especially when I'm lying flat.

Testing suggestion? Suggestions of any kind please?   Thanks much!    

[LowMac]

Lynn,

Thanks much for the info! I will do more research on POTS and appreciate your pointing me to it. Yes, I too believe there is a connection of MVP and dysautonomia to thyroid diseases.
Here's one that talks about that connection:
http://www.bellaonline.com/articles/art59216.asp

Thanks again and I'll post again as I go along.

[Lynn63]

Your symptoms sound very much like Postural Orthostatic Tachycardia Syndrome (POTS).  It can cause a long list of symptoms some of which are anxiety, dizziness, nausea/vomitting, fatigue, headaches, blood pressure fluctuations, tachycardia, etc., etc.

There are different types of POTS one of which is usually hereditary...it is called Hyperadrenergic POTS.  People with that form often have sleep disorders as well as neuropathy symptoms (nerve type pains you describe) associated with this as well.

Some people who have MVP also have POTS.  Some people with POTS can have symptoms that are so bad they are disabled.

Interesting that you mention the thyroid.  I had half of my thyroid removed recently due to an enlarging nodule.  It didn't turn out to be cancer but they did note thyroiditis.  I have often wondered if there is a correlation between POTS and thyroid as well.

My daughter was diagnosed by a tilt table test performed by an electrophysiol. cardiologist.  We now believe myself, my mom, my niece and my son all have this hereditary form of POTS.

Unfortunately not many doctors know much about this disorder and it is very frustrating finding someone to help.  I suggest you research online especially articles by Dr. Blair Grubb.  He has written some excellent articles....the most recent one I found was published Oct. 2008.  I will try to find the link to this article and send it to you later.

Your best bet would be to research this and bring articles to a doctor who is willing to listen to what you say.

Something you can do that can be of help in diagnosis is take your blood pressure/pulse laying down, sitting and again standing.  Keep a record of this so you can show this to the doctor.  An increase in pulse of 30 beats per minute from laying down to standing can be indicative of POTS.

Good luck to you and let us know how you are doing!
Lynn:)

[LowMac]

I too thought this was an ask a doctor forum but greatly appreciate any input.