Hyperadrenergic Pots & Htn Treatment?

[POTLUCK]

My Diastolic BP runs 95. This is above stage 1 HTN and on top of that I am diabetic so they recommend better HTN control not worse. Any medical book/journal on the subject would recommend treatment and talk of the severe life threatening dangers of not treating.

I have previously asked the Cardiologist/POTS expert who treats my POTS whether supplementing with salt was a good idea in Hyperadrenergic type POTS with a higher blood pressure rather than lower blood pressure. He basically said that he did not know but thought I should. I have been. I doubt it is why my blood pressure is that high. I think it is because I have tapered the Propranolol to almost none.

I am seeing my Primary and Cardio/POTS doc both soon. My guess is the Primary who knows nothing of POTS ( not stated negatively, many primaries have not heard of it. ) will recommend a HTN medicine. My guess is the Cardio will not bring it up unless I do. I will most likely go with the Cardiologist recommendations over the Primary, by asking him, as he is the specialist.

My question is this: SHOULD HTN IN A HYPERADRENERGIC POTS PATIENT BE TREATED?

I am extremely unlikely to have fainting episodes if I lower my blood pressure to normal, as I never have. It does not, however, make sense to me to salt load in order to raise blood pressure as a treatment and then take a blood pressure lowering medicine.

As I am aware there is a greater percentage of patients with Hyperadrenergic type on Dinet than in the general POTS population, I was wondering if there is anyone who has run into this question, or anyone who can weigh in on it, especially anyone in the medical field.

Also, if I was to take a HTN medicine any thoughts as to which would be less harmful to a POTS patient.

[arizona girl]

Hey potluck,

Well I'm hyperandregenic diagnosed by Dr. Grubb and confirmed with a supine/standing catchecholamine test with an almost triple rise in norepi on standing. However I also at times was waking with hypotension. So I was really swinging. I don't even worry about my dystolic being in the 90's, as it used be much higher, so I think 90's are good for me. My dysautonmia is due to small fiber neuropathy and probably hashimoto thyroiditis and other autoimmune issues. I've treated the nerve damage and immune deficiency I have with IVIG and that helped correct my swings somewhat and now after in the t4/t3 thyroid meds it is even better.

First though does htn mean hypertension? My next question is does your distolic drop when you lay down. I guess I need to know what your bp/hr are doing posturally supine and standing. Do you have a documented rise in your norepi? Also to be clearer have you ever had a syncope or a near syncope?

Having asked all that in my case Dr. Grubb told me he tends not to treat patient's with hyper pots/dysautonomia with salt loading. Vanderbuilt had prescribed it for me and it didn't do much for me symptoms wise. I tend to run low on blood sodium so I do eat some himyalian pink salt, but the low salt may be due to my messed up endocrine system and or burning through it because of the elevation in norepi.

Dr. Grubb prescribed me low dose labetalol it is an alpha/beta. So, I am treating with hypertension meds labetalol lowers both bp/hr. It is short acting so I take more if I'm having a bad day and less on good days, sometimes none at all on real good days. I also never take near bed time as I drop naturally on my own.

So thats my story, hope it helps you.

[POTLUCK]

Arizona Girl,

Excellent questions and I was kind of brief, and unclear. First yes I meant HTN ( or Hypertension ) Second No, I am using the term Hyperadrenergic POTS very loosely, as definitions have been posted in various places.

My Adrenaline and Noradrenaline are an entirely seperate story. They have never been done on the tilt table. My standing NE was done at Quest and came out over 8000 pg/ml ( the highest Quest goes ) with a high Epi of 270 pg/ml. I was referred by endocrinology to a Pheochromocytoma expert who ran a MIBG scan read positive by Radiologist, and a CT read negative by Radiologist. We did metanephrines and normetanephrines which were normal. Another radiologist at a major university center has now found a very small ( 7mm ) nodule that the report reads as correlates exactly with the MIBG. I do not think it is likely I have a Pheochromocytoma.

My Diastolic is about the same standing and lying on 3.75mg Propranolol BID. It can bounce the reverse direction of the heart rate when I am standing, which appears to be the body trying to compensate. ( i.e. increase blood pressure to allow decrease heart rate. Then it goes higher than 95 into 100's.)

I had a great deal of "dizziness, cognitive problems, all the time before my exercise, even to the point of of stumbling, fumbling things sometimes and felt awful" however I have never fainted or felt I would faint, thought there are many times when I simply felt so much better lying or reclining that I did. ( I would thus define the answer to Syncope/Near Syncope as no )

[arizona girl]

Hmmm, interesting. Did I answer your previous question?

You do know that pheo's can be very small and still cause problems. If I were you I would get retested for everything, 8,000 is really high and the fact that you aren't syncopying may suggest that it is high even when you are supine. I had my supine and standing cats done at sonora, just go in before your test and ask them if they have a room with a bed and print out the labtest online protochols for it and give it to them to follow. Ask for an early appointment and come back. It is important to be very relaxed before the supine part, I'd get there early and lay back in my car before going in.

I think too pheo's don't send out hormones 24/7. So, your mets may have just missed it. Sounds like a second or third opinion is in order.

So, are you saying that exercise is managing your symptoms. That might make sense as exercise would probably burns some of that norepi off.

If your bp/hr aren't changing posturally, I'd think about bp meds to lower it, in that case labetalol might not be the best choice. I think if you google treatments for a pheo, there are bp meds that are used to treat it before considering surgery. Surgery is currative though it is a bit of a scary surgery. Well those are my thoughts, hope they help.

[POTLUCK]

I had the primary doc recheck the metanephrines. It is hard to find anyone in my area who will do lying and standing NE/Epi which I would like to have done again. However the metanephrines are supposed to be more accurate for Pheo. They do not show the postural change to test for POTS.

I also saw the Cardio POTS doc this week who said treating the HTN is a good idea in the long run but he agreed we should wait as my symptoms are not as bad now and he felt it is OK to continue at this level for now.

Thanks for the response, and help.