jamesldavis1

As in one that will not go away/is permanently there.

Mine started after a horrific reaction to pseudoephedrine and won't dissipate.  Have tried everything (except depakote)

And has it basically been a game changer for all of you?

How many of you have symptoms even while laying down, not the tachycardia, but chest pressure, migraine, or other.

Mine started as a reaction to sinus med Pseudoephedrine, and I'm wondering if anyone else has the same source as me.

So I am now pretty **** convinced I have Hyper POTS.  I thought I did given my symptoms and my BP going up when I stand up by about 15 points, when I take it at home supine and standing.  Then I had a TTT, which showed level BP, and no rise on plasma norepinephrine, so I was like "****, I don't have it, ***?" But after doing another supine and standing yesterday, and matching that with my symptoms, it seems improbable I don't have it.

So I'm wondering if anyone else has been dx'd with Hyper POTS, but had a TTT which didn't show it?  What did they base your diagnosis on, if not the TTT?

And what has helped?  I tried clonidine, and started having terribly blurred vision and would fall asleep within 30 minutes of each does, but was on verapamil at the time too, so who knows.  I tried labetalol for like a week, but I think the dose was too low, and I didn't give it enough time.  I've read that labetalol and carvedilol are the best treatments.

Is it safe to take Effexor if I have POTS (goes from 45 bpm to 150bpm, blood pressure goes up about 20 points as well, but not hyperadrenergic on my tilt table testing)?

I am on propranalol for POTS. I am going on Effexor for migraines, because nothing else has worked. If need be I can switch up POTS meds, but am worried about taking anything that has norepinephrine in the name.

Have had tachycardia, palpitations, brain fog, headaches, visual symptoms so **** long. Mid 20's male, had lyme disease, rocky mountain spotted fever, others. What works? Does it resolve?

Anyone tried Acetazolamide for headaches? Or is this bad for us since it's a diuretic?

Hi there,

I saw one of the two autonomic specialist neurologists seeing patients at Mayo MN 6 weeks ago and went through the 'pots clinic'. The testing lasted 6 days, and the bill was over 25,000. The autonomic specialist I saw there there manages the pots clinic and does a tremendous amount of research on pots and autonomic dysfunction. She's brilliant and discovered through very extensive testing that I not only have pots, but also neurocardiogenic syncope, NCS. Both are different forms of dysautonomia.

I had two different TTT's, one in the autonomic pots clinic that lasted precisely 10 minutes which proved pots and also a cardio TTT. During that TTT at 13 minutes my heart rate went from 70 to 30 with no discernible heartbeats in between. I passed out and my heart stopped beating for 7.5 seconds.

So I learned I not only have pots but also NCS, another form of dysautonomia. I'm also extremely hyperadrenergic, and both hyper-pots and NCS (both are forms of dysautonomia) ... both associated with being hyperadrenergic.

I've been to Mayo MN many times, had several surgeries there, and also was regular patient at Mayo in Jacksonville for over a dozen years.

Mayo MN has very very recently changed their policy on seeing autonomic specialists at the Mayo MN clinic. New patients will no longer see either of the two autonomic specialist neurologists. Sigh...

They have very recently decided to 'train' internists to evaluate dysautonomia patients. I've hesitated to share this on Dinet. It's a sad turn of events, and a reflection of how few dysautonomic specialists there are and the volume of patients seeking to be seen by an expert.

Please call the Mayo MN clinic and ask if you can see one of the two dysautonomic neurologist specialists, there were only two seeing patients, and as I said they are no longer seeing new patients, and this is a brand new policy.

I posted about my visit under a thread I started several months ago.

Wishing you the best on this!

K

Hi, I saw that you have hyperadrenergic POTS like me, I was wondering what you are taking for treatment? I read that Clonidine and Labetalol taken together are the right treatment, but maybe not?

Does anyone have this form of POTS? I have heard that Clonidine and Carvedilol or Labetalol is what works, as it blocks all relevant receptors. Any experience with these meds?

I also have anemia (32 hematocrit).

I tried IV Sodium Ascorbate (vitamin c + sodium) way before I knew I had ortho hypotension and I had an initial reaction of very strong fever, chills, shakes for several hours followed by feeling a lot of energy for the next 24+ hours and feeling my symptoms decrease dramatically, feeling peppy and well. But I also had some internal bleeding due to red blood cell thinning.

Do people generally have a strong increased sense of wellness with IV sodium (saline, etc.)??

My doses were anywhere from 3mg sodium to 8mg sodium, so it was a lot, accompanied with about 16 oz iv fluid and 32 oz oral water.

I was diagnosed with LYme, Rocky Mountain Spotted Fever, Cat Scratch Fever, West Nile Virus, Strongyloides and Toxocara about a year ago, all have been extensively treated as best we can.

For one year prior I had dizziness upon standing and my vision would go out for a few seconds as well. The doctors looked at me like I was crazy when I said this. So fast forward to 6 months ago and I took some sudafed and my heart and bp went bananas, and i was in the hospital for 4 days, and ever since, along with the orthostatic hypotension has been intense intense tachycardia when i stand up and sometimes in the middle of the night when I roll over.

I just had bloodwork done and electrolytes and white and red blood cell count are normal. My urine showed low sodium - 32, normal range 40-220 and chloride - 60, normal range 120-200.

I haven't exercised in a year due to illness and then the POTS, but my height is 6 ft and bodyweight 150.

I have tinnitus, whooshing and constant high-pitch ringing, visual snow, pulsing dark spots, floaters, headaches, chest pain, pain in the throat/chest area when I take a deep breath, surging blood flow in my jaw/throat/chest when I get cold or move around too fast, as well as fatigue in my muscles and weakness.

Any thoughts and suggestions would help. Has anyone used herbs to help with their nervous system? How much does increasing sodium content tend to help people? Any tests I should ask the docs about? Thanks