HyperPOTS8

Watch dr Grubb's video posted recently by Arizona Girl.. "POTS is an inability to properly regulate HR and BP." I have significant BP fluctuations, from 70/50 to 190/120, each end of the spectrum is symptomatic but in a different way. I have gotten pretty good at managing these fluctuations by adjusting medications. For me, i have severe hypovolemia and my tachycardia largely resolved with Florinef and high Na diet, but goes as low as the low 40's.

The catecholamines include epinephrine, norepinephrine, and dopamine. The layman's term is adrenaline. These are elevated in hyperadrenergic pots in which case injecting yourself with epinephrine would make you feel worse. If, however, you were having a true anaphylactic reaction it could be lifesaving.

Lynne, good luck. I hope tapering off will help you. Please let me know!

Lynne, I do not take amitriptyline. It is a tricyclic antidepressant which is on the list of drugs to avoid in POTS (the list is on this website). Even though you have been taking it awhile, you might discuss with your doctor a trial of tapering off it given your current symptoms. If your POTS has worsened over that time period, you may be more sensitive to the catecholamine-increasing effect of the amitriptyline

Lynne, how long have you been taking the amitryptiline? It can increase catecholamine levels which could be the cause of your shakiness, exhaustion and ?increased tachycardia.

Linda, For the redness and itching at the site of the clonidine patch, use a medium or high potency steroid cream where you are going to put the patch. Wait 10-15 minutes, then apply the patch. This is well described to prevent or reduce the local skin reaction to the patch without affecting the drug absorption. Also changing the patch every 5 days or so will help with that. I have very high NE levels (standing 3300) and the clonidine patch is very effective for me. I don't have any side effects like you and Arizona Girl. I usually take a 0.3 mg patch plus a 0.1 mg patch but at times I need a little more or a little less and I do exactly what you are doing and cut the 0.1 mg patch in half or even thirds. I have also found that if I take oral clonidine BEFORE something stimulating (eg my kids' baseball games) that would previously cause hyperadrenergic symptoms and a significant BP rise, it is very effective at preventing both the symptoms and BP rise. The clonidine patch is very long acting and according to the package insert you shouldn't get the rebound hypertension you can get with the pills by just stopping them, but you sould monitor your BP when cutting back the dosage to be sure it doesn't shoot up.

Having an irregular baseline suggests most likely you were a bit shaky during the test. Not anything important.

I have hyperPOTS and had a gradual, progressive onset as described in Dr Grubb's 2011 article on hyperPOTS (link recently provided).

I don't think anyone in Colorado does the proper complete eval. I went to Mayo. How was Dr Sauer?

LMG: I adjust my sodium intake based on my weight b/c I notice some variability in my volume status. On average, I take 5-6 gm in addn to what I get from my heavily salted diet. I mostly use NaCl tabs but also count Lipton soup in the 5-6 gm added to my diet. I take both magnesium and potassium.

Ashelton80: I am so sorry to hear about your grandmother. I remember from previous posts that you seem to have significant hypovolemia. I do as well. I was tested at Mayo and found to have severe plasma volume depletion. Florinef helped me greatly and I have no side effects. I could tell a diffence within 24 hrs. For me the combo of high salt, fluids and Florinef is key. Florinef w/o high salt or vice Versa was not nearly as effective. I take Florinef 0.2 mg daily. If you do start the Florinef be sure to get your potassium and magnesium checked periodically.

Dr Levine's protocol determines your HR zones based on your age but also your TTT or ten minute stand test, so that if you have significant orthostatic tachycardia you should have a higher HR goal for exercise than the traditional age-based formulas.

Sue, no it wasn't fasting.

There is a pots clinic at univ of Colorado anchutz dept of cardiology.

I went once for routine electrolytes as I am on Florinef and my random glucose was 46, but I felt fine.

I have Kaiser, we use the popular EMR called EPIC and "Postural tachycardia syndrome" is available as a dx...it is listed on my electronic problem list. I am not 100% sure, but I think if it is available to list as an electronic dx, it has to have an associated ICD code.

Quest diagnostics can do it or your home lab should be able to do it as a send out to Mayo.

Florinef has helped me so much and I have very high norepinephrine. I believe it decreases my SNS stimulation by decreasing my hypovolemia. I felt better in less than 24 hrs. I agree with bananas..the only way you will know is to try it!

Rama, can you elaborate on melatonin in hyperPOTS, have references, etc? Also, what about volume deficit in hyperPOTS. Thank you

Hi Arizona girl, I too have hyperPOTS with a supine norepinephrine level of 1300 and upright 3300. I take clonidine patch 0.4 mg every 5 dats plus oral clonidine prn. Despite this my BP is suboptimally controlled and with adrenergic surges (which can occur with going to my kids' ballgames, etc) it will go very high (max 193/127). Would you be willing to share your experience with using labetolol in a titrating fashion? I also have other autoimmune illness and believe my hyperPOTS may be autoimmune as Dr Grubb mentions on his recent YouTube video. I saw you are trying IVIG. Has it helped your POTS? Thank you