Suthrngal

I have dysautonomia. As long as I hydrate and take salt tabs and magnesium most symptoms are controllable. My muscles can't handle being worked. They start shaking. What could be goin on? Some times are worse than others. Any resistance causes weakness and requires recovery. Does anyone know a Portland Doctor for pots? Who's the top for figuring out cause of POTS? Saw mayo in MN.

Hi guys, where do I find the post that's describing what's going on with you Maia? I also get kidney pain And other urinary issues.

OML my rt kidney is a "floating kidney" suddenly and I can feel it rt side. I am very thin. Try did an ultrasound and ct scan. I felt the mass and it was found to be a kidney. Do I follow up with Urologist? I per ALot thus can't hold in to fluids!!!!

Thanks. I live in a small town. I had a POTS severe reaction to one dose of hydrocortisone and that strted daily pots issues.

How do we find a doc to help us find te CAUSE of pOTS symptoms...I feel like I've been playing whack a mole of symptoms for 7 years! I control most with salt and fluids. I now have neuropathy (pins and needles) in legs and feet..... And still times of painful slow gastric emptying. One doc thought this was caused by low cortisol and rec. Cortef (hydrocortisone)...before I knew I had POTS and my symptoms took a downward spiral straight into a year of ****......ER visits, Dysautonomia clinic in AL, MAYO and tons more neurologists etc. question: if I had low grade pots (dizziness, dehydration and slow gastric emptying) and the CORTEF ruined me....any idea why? Thank you for your time.

Great info here. I drink, it comes out. Always has. Keep testing low in sodium. Even tho I salt load as per MAYO. mAYO did not Rec. iv's but it was after an iv in the ER that confirmed to me the high hr, low Bp, dizziness and blocked intestines were all related. Who here is helped by iv's? I definately have a kidney issue involved. All of you mention this....what do we do about it? Just up fluids/salt??? And plz see comment below as my most annoying symptom now is neuropathy in legs and feet! Seems to be related to times of blocked intestines although can't confirm! Pins and needles! But only sometimes but significant. Someone mentions this below. "The second theory has to do with the whole Renin/Angiotensin/Aldosterone cycle that they have found to be "off" in some POTS patients whereby we don't retain fluids normally out of the kidney. That explains why many of us tend to run a litre or so low on fluids. Not sure if it's part of the same theory or a third theory that the autonomic neuropathy some of us have affects the kidneys' ability to retain fluids as well. Therefore putting fluids directly into the vascular spaces tends to work better for some folks."

Keep the info coming....thank u!

Same. Feet mostly. No idea why? Docs day try meds but its better sometimes so there is a cause.

Great info...thanks. Sometimes when ur so sick...you can't fight for yourself and research so I appreciate you sharing.

And PS I am so sorry this happened. I had this happen too. Glad u got some relief. Mayo told me they don't rec. saline ....I'm wondering why????

Following.

I'm following. Looneymom....you're Wonder Woman. Prayed for you last night. Just FYI. I'm learning thru your plight!

Recommend? Thanks for taking your valuable time to respond.

I am told I am a choline drainer via 23andme...but never took. How much does Bruner recommend?

Thank you!!!

Female....

I heard of a genial POtS doc/specialist who is now in Poryland on this site but can't find it now.

I can't take Zyrtec.

A while back someone mentioned a doctor who had trained possibly at Cleveland Clinic and then moved to Portland...it was a female doctor. I need a POTS doctor within driving distance. Thanks!

Ps the article you posted above...what's the skinny. What did you find? I don't have it in me to read the article. Thanks!

Looney mom I have had all the tests you mention for Tyler. Wow! We're fighting aren't we? My GABA is low and glutamate very high on nutraeval and neurotransmitter test. When all symptoms started I became highly allergic to MSG. Let me know how the GABA is working. I have tremor too suddenly. Also I am floored a neurologist tested for all the quest tests above! Yay! So did the biaxin work???? Praying for you as you battle for your baby!

Can you share what prompted the doc to test mycoplasma if previous lyme tests were negative. I am told by local neurologist that lyme tests must be done in spinal fluid...yikes. What did Tyler's mycoplasma test consist of, just a blood titer? Was it called just Mycoplasma or something more detailed? Yay for his progress!

Suspected low cortisol from a natural MD. Saliva adrenal test. Regular mainstream md say I did not have low cortisol based on blood tests. I took one dose and immediately almost passed out. High heart rate pounding! Went to ER and try said I was dehydrated. Treated with two bags of saline and felt wetter until a week later when I was dehydrated again! Where is my salt that retains my fluids going????? I only test barely low on sodium and low normal when I take tabs!

Thanks. So we, as Pots people, as a rule don't take cortisone?

Last year is when my PoTS came on full time. I had episodes prior but since taking one dose of Cortef I have been battling dehydration, high heart rate and low Bp. Any idea what the Cortef could have done?