HyperPOTS8

The definitive test to rule out adrenal insufficiency is a cortrosyn stimulation test. It is done in the AM in your doctor's office...can't be done with a home kit.

My cardiologist talked to Dr Grubb about getting testing for the adrenergic antibodies in April and was told this testing was only available in Brazil, but that was 6 months ago.

The term "functional" in medicine means that there is nothing anatomically wrong on imaging or other testing, eg functional abdominal pain means that your stomach appears normal on EGD, etc. It really is not supposed to mean it's all in your head.

Weatherman, some people take a month or so to build up to the Levine protocol. If I remember correctly, it starts with about 50 mins on the recumbent bike--10 min warmup, 30 mins at your target HR (which of course will be more difficult to determine in your case since you are on metoprolol...you will probably just need to go off "perceived exertion" instead) and then 10 min cool down). It is the graded nature of the program that is important. Graded both in terms of level of exertion, time of exercise, and also starting out with all exercises being done recumbently, eg recumbent bike, rower, or swimming and seated weight lifting to strengthen your leg muscles, progressing to upright bike, and finally elliptical or walking.

I had worked out all of my life and also just made myself worse in the beginning trying to exercise on my own by doing too much too soon.

Yes, I have completed Dr. Levine's protocol--twice. It helped me greatly, but did not cure the problem. The reason I completed it twice is that after I completed it the first time, my tachycardia was much improved and a local cardiologist then questioned the diagnosis and I went off the 10 gm sodium diet. My weight then dropped from 104 lb to 97 lb in 5 days (due to hypovolemia) and I got very sick again, so sick that I had to start the program back over. As Dr Grubb says on his hyperPOTS video on YouTube, exercise is extremely important in the management of most POTS patients. If you just lay in bed (which is the only thing you feel l Ike doing if you have severe POTS), that will make you worse which will make you want to lay in bed even more--a vicious cycle. I get severe "episodes" where I can't stand or sometimes even sit without vomiting. As soon as I get past the most severe symptoms, usually one day, I make sure to get right back to exercising. I workout less intensively and only do for example the bike rather than elliptical until I start to bounce back, usually a few to several days and I am able to do the more intensive, upright workouts again.. I have heard that dr. Levine's research study has completed and you can get the protocol online. You do not have to go off meds, that was just for research purposes and even then, you could stay on meds if needed. The protocol is difficult. In the beginning, you will feel worse, particularly after the MSS workouts. It has, however, helped many patients tremendously. There is a great video testimonial from a POTS pt on You Tube, called POTS--how to get better. Good luck.

Agree you should absolutely go off the florinef (at least one week as it has a long half life) and the metoprolol before your TTT. They both can make the test look like you don't have pots even if you do. If the test is negative they may not give you an opportunity to do it again, rather just say you don't have pots!

Glucocorticoids like dexamethasone do cause volume retention so that could be a sign tht Florinef may help you, but there is also frequently a nonspecific effect of steroids that makes people feel good.

See the blog at www.potsrecovery.com

Hi Sue, I take Florinef and don't have that problem, but I have read some people with similar issues reporting benefit from an abdominal binder.

Jennij, I have very hyperPOTS with upright Norepinephrine 3300, but also severe hypovolemia documented by blood volume analysis. Florinef and salt tabs are an essential part of my therapy and recommended to me by Mayo even though it seems counterintuitive. Hypovolemia can be one of the contributors to high catecholamines. In fact, high catecholamines can cause hypovolemia which in turn can increase the catecholamines further. Patients with pheochromocytoma are almost always hypovolemic. So, it depends on your case! POTS is so heterogeneous.

If you feel as if you are hypovolemic, but just can't hold on to the salt and water, you may benefit from Florinef.

Targs66, by the way, St Thomas Hospital is the place to go for APS in the NHS. Let me know if you get tested and you are positive!

I tried warfarin twice, the second time to the higher goal INR Professor Hughes advised. it did not help my autonomic trouble and my migrainosus symptoms came back (not as bad as they were in the beginning, but bad enough) so I switched back to the lovenox since for me it is clearly more effective. I know that has been true for others with APS. In addition, for me, my INR on warfarin is extremely labile ( not uncommon in APS) and lovenox feels much safer (it is dosed based on weight, not INR). The next step is a trial of IVIG and if that is not effective then rituximab.

Hi Elena,

I'm sorry you are going through all of this. I live in the US, but Professor Christopher Mathias is one of the world's best experts in disorders of the autonomic nervous system in London. Good luck!

I have antiphospholipid syndrome and according to Professor Hughes in London (for whom the syndrome is named) it can cause various autonomic abnormalities. I am on plavix and lovenox (and previously warfarin) which has completely aborted my severe daily migraines, trouble thinking, and occasional stuttering, but it has not helped my autonomic dysfunction(even though all of my symptoms started together). But according to Professor Hughes anticoagulation usually does improve autonomic dysfunction in this syndrome provided it is adequate. The neurological manifestations of Hughes syndrome usually require higher doses of warfarin and just like dysautonomia, most doctors only know about the thrombotic, not the non thrombotic, manifestations.

Hippychic, I had tremor and daily hyperadrenergic episodes that included shaking/shaking chills that completely resolved when I got my volume status corrected with Florinef and salt tabs (I was shown by blood volume analysis at mayo to have severe hypovolemia).

Nowwhat,

He are the tests for APS/Hughes syndrome:

Anticardiolipin antibody (IgM and IgG)

Lupus anticoagulant

Beta 2 glycoprotein (IgM and IgG)

You do NOT have to have a high titer of the antibody levels for it to cause a lot of manifestations.

To confirm the diagnosis, at least one of these tests should be abnormal on more than one occasion 12 weeks or so apart

P.s. It has also been associated with labile hypertension, in fact that was in Prof Hughes original description of the disease in 1983

Nowwhat, Have you been tested for antiphospholipid syndrome (also called Hughes syndrome)? It commonly causes the MRI changes you are describing as well as cognitive issues. It is an autoimmune clotting disorder, but can cause non- thrombotic manifestations as well such as severe migraines, trouble thinking, etc which are felt to be due to sludging of the blood, rather than clotting. The diagnosis is made by simple blood tests. Unfortunately, most physicians only know about the thrombotic manifestations. The treatment ranges from baby aspirin to warfarin/ heparin.

Can you get a new doctor, that's terrible!

Alaska,

Glad the adderall is helping you. That's not a meaningful or significant change in your BP or HR, both are totally normal.

All aboupeace,

Since you feel so poorly with the low HR's you,should let your MD know, hopefully you can get a holter monitor. It shouldn't be caused by the Florinef or synthroid it looks like you are taking.

Good luck

Same thing, mine goes to 42-43 but I don't feel any worse. My cardiologist who is excellent is not concerned about it.

Yes! Love salt tablets. I have to take Florinef, too, but hopefully your daughter won't!

Make sure they check your potassium levels in a week and again in another week or so. Most people will require prescription potassium with Florinef. They should also check your magnesium and calcium levels as they can get depleted as well but less likely than potassium depletion.

I felt better within 24 hrs of the first dose. Remember you have to increase your sodium (up to 10 gm per day) and fluid intake with it for it to work optimally. I hope it will help you!