My Story Of Dysautonomia And Struggle

[davecom]

Some test results for those interested in my case:

- N-methyl-histamine urine 24 hour: normal

I guess this makes MCAS a lot less likely?

- Metanepherine urine 24 hour: normal

I guess this basically rules out pheochromocytoma?

- Exercise stress test: normal - finished the increasing hard biking with a heart rate in the 160s

The attending doctor actually asked me after if I was an athlete.

The biggest other result for me has been lower heart rates with walking. The only change is I have put back on a total of about 10 lbs (now 170) and my PT brought me a recumbant bike and I'm now doing 20 minutes a day on it. I've been doing more salt loading too (probably averaging 3-4 grams a day). I also am able to walk for about 20 minutes a day (split up between multiple sessions, the longest now 12 minutes).

An interesting result is my heart rate actually goes down with walking. If I stand up in place for 2 minutes, my heart rate will go to 150ish. If I start walking, after 2 minutes my heart rate will go down to about 100. At night or an hour after a midodrine dose it will even go down into the 90s and occasionally dip into the 80s with walking. I heard before that there maybe circadian rhythm element to some POTS. Which subtype is that? Or is it just that the midodrine doses I take throughout the day (3 doses, 3-4 hours apart) are cumulatively helping me at night? I thought it was shorter acting than that, but then again with a half life of 3-4 hours, it could be somewhat accumulating by the end of the day I guess.

My worst current symptom is the constant head pressure, headache, dizziness, brain fog, irritability, and difficulty thinking when sitting upright and this continues for the entire day. Chest pain is a bit better. Breathing problems are a little better (no jinx please). Acid is worse.

I am thinking more and more that my type of POTS is highly related to hypovolemia. Hence, why when I walk the heart rate gets better - things just start flowing more to the brain. Also, I think it explains my head problems when just sitting (but not lying).

More tests on the horizon in the next 4 weeks: tilt table, ultrasound of that narrow jugular vein, autonomic neuropathy skin test, anti-gangliotic antibodies blood test.

I am going to be trying a beta blocker (atenolol) at a low dose of 12.5 mg starting in a couple days.

[Katybug]

The histamine test does not necessarily rule out mcas. You have to do the histamine test within an hour or so of an acute reaction or it often does not capture increased histamine. Also, my POTS neuro says that it's not unusual for a POTS patient's HR to go down with some moderate walking because it pumps more blood back up into you thoracic cavity and allows the POTSie heart to slow, however, when you stop walking it will probably jump back up as blood pools back into your lower extremeties.

[davecom]

Getting a lot more testing done and saw a specialist in person in NYC who I am very hopeful about and confirmed the diagnosis with in person testing. After 5 minutes of standing my blood pressure collapsed - my diastolic went way up and systolic dropped to create a dramatic narrow pulse pressure accompanied by a 140 HR.

It's so important to look at your own results. I studied the halter monitor from October and I already had POTS! The technician and doctor just didn't pick up on it. There was pronounced tachycardia every waking hour and I wasnt doing any exercise! That was before my second head hit and a couple weeks before i started feeling dizzy and headachy when standing but a couple weeks after the gastrointestinal symptoms started and a lot of the other possible triggers - so I'm still not sure it's not post-viral/immune but now I am more worried that it is a long standing heart condition related phenomenon that just suddenly got much worse... But the bottom line is I really don't know now if it was sudden onset or pre-existing and just got much much worse. I never had symptoms before October - except maybe a little shortness of breath which I figured was just being out of shape, but I still hiked, played tennis, and did other very intense physical activities all the time.

But then why the sudden gastro, skin, head, and coldness changes... Well the autonomic neuropathy blood test and skin test will both be back in the next month and we will see. If they don't see an obvious cause for the sudden changes in my heart on echos then I have to continue to assume that this is separate from my congenital heart conditions that were repaired. But the new POTS specialist says my diastolic dysfunction is just making the situation worse - not probably causing it... Which is good since I rather have a treatable immune issue than a heart condition honestly.

[davecom]

Oh and Katy my pots doctor said the same thing about the walking eart rates - that the big slowing I see with walking is totally normal. In fact e wants me to walk more. I'm up to 8-15 minutes 4x a day but he wants me walking every 1-2 hours - but never standing still. That's quite different from the only recumbant exercise that Levine recommends.

[Relax86]

Dave ~ your symptoms that you reported on April 18 th are pretty much my symptoms from Spring to Summer of last year. I was also positive for low blood volume. I just wanted you to know I did get better. These days I'm calling it 90-95%. Good luck and keep moving when you can. I know I mentioned it before but bloodwork combined with pretty wicked menstrual cycles always set me back. Keep up with you research and keep on moving when you can. Good luck.

[davecom]

More test results:

All autoimmune panels (to exclude Scleroderma, Sjogren's, Lupus) - Normal

Mayo Panel - Normal

TTT - Stopped after 30 seconds because heart rate went to 140s from 70

Sweat Test - A little abnormal

Valsalva - Normal

[Christy_D]

_{Davecom, Sorry I'm late to the party. I just read through your posts and the nose bleeds caught my attention. My son has frequent nose bleeds and his are caused by MCAS. His mast cells dump to much heparin, the most his mast cell doctor has ever seen in any of his patients. You may want to look more at MCAS. My son has POTS and MCAS. Even if your test results come back negative, you still might have it.}

_Christy

[davecom]

Actually got my test results in the mail just now. It turns out it wasn't all normal. My CH50 was elevated (says H >60, doesn't give a specific number). I don't know much about the immune system. Reading about elevated levels yourself online is scary - says it indicates a serious health condition like cancer. Hmmm, not sure why my PCP said on the phone everything is normal.

But it seems like an elevated CH50 on its own doesn't really say much except that some underlying condition maybe causing chronic inflammation.

[Relax86]

My complement testing was high and my C3 was low. I was told it was not alarmingly low. My PCP told me to forget about it. It's really difficulty to take that advice. But the reality is that I am consistently feeling better. So I'm going to tuck it in the back of my mind.

[davecom]

Luckily my C3 was normal. I just got my official autonomic testing report and it stated mild reduced sudomotor response maybe indicative of small fiber neuropathy. Now on to the skin testing in a few weeks to confirm that.

[Sheila1366]

Dave, wow! While I was reading this, I got goosebumps. I was reading a lot of the same problems I am having.

First off I got to say as a mother to 2 adult daughters that have serious health issues, my heart goes out to you. You are so young to be this sick.

Secondly, I have gastroparesis along with dysautonomia ( not sure what form yet, go to Vanderbilt in July ). I wonder has anyone mentioned gastroparesis to you during your GI problems. I started out with severe reflux, to the point I would wake up hoarce. Raised up the headboard, helped very little. Then the nausea and pain came. I had a gastric empyting test and found I have gastroparesis. I horrible disease. I pray you do have this but it may need to be looked into.

I was diagnosed with dysatunomia first though. I had near fainting spells, heart would race and get close to 200 beats a minute then drop...etc. Had a tilt table and found I have dysatuonomia.

These were both diagnosed in 2008 but not til 2010 did they become a real problem.

I am so sorry you are going through so much. I also have the crazy feeling you described with before I try and go to sleep, sleep takes along time when this keeps happening.

I also get freezing cold. I have raynauds also. Super cold hands and feet at first. Now I can be freezing, under as many quilts that I can get. Once I warm up I start to feel better, but it never lasts.

I am still learning a lot about all of this. Have so many questions. Have had lots of help here and so questions answered and just great support.

Welcome to the club.

Hope things get better for you and you get some answers. Keep looking.

[davecom]

So I tested positive for Small Fiber Neuropathy via both QSART and Skin Biopsy now. One more clue to the puzzle... onwards and upwards.

[Akgirl]

Yikes!! Hang in there