Ttt Results - What Does This Mean?

[Anoj]

Hello,

I have recently had some autonomic testing done, and I have received the results over the phone. I have a follow-up appointment with the doctor to discuss everything. I don't have the lab paperwork, but I plan on requesting it.Until then, I'm wondering what it all means.

Some of the info sounds quite contradictory. For example, I had extensive veinous pooling but with vasoconstriction. How can these two things co-exist?

Results also said "excess adrenaline" and "transient vasodepressor reaction" (which I guess means pre-syncope, or I didn't faint).

Anyway, the treatment is to discontinue Florinef and Midodrine and start Betaxolol (beta blocker), 1/2 pill then 1 pill and upping the dose every 3 weeks as necessary.

Another thing I thought to be strange was that before the pre-syncope, my blood pressure actually INCREASED instead of dropped. It wasn't until I was almost fainting that it plunged. It went up to 140/something then dropped to 90/something during pre-syncope.

I'm beginning to think that I have hyper-POTS. I have never actually been diagnosed with POTS. I always thought that my syndrome lacked the tachycardia necessary for a true POTS diagnosis. I don't feel that I have tachycardia, however, I have been checking my HR lately, and it goes up about 20 beats from sitting to sanding. Not sure if that qualifies for the 30 beats necessary for POTS. Also, the smallest activity, like getting out of the bath or doing laundry, causes my heart rate to rise significantly and make me out of breath.

New development: tonight, I spent nearly an hour cooking in the kitchen and began to feel shaky, weak and faint. Went to the bathroom and noticed that my face was FLUSHED. I'm a little freaked out now, because I am afraid that I have hyper POTS. I have never noticed the facial flushing before - but then again, I never looked at myself in a mirror during these episodes.

I am a little concerned that I have hyper POTS and this may not be recognized by my doctor.

I'm also afraid that the beta blocker is the wrong treatment! I don't know what is normally used to treat hyper POTS, but I have read that it is not beta blockers.

If anyone has any insight whatsoever, I would greatly appreciate it.

I go to the doc next Friday, and I will have TONS of questions for him!!!

Thank you!!!

[issie]

Some hyperPOTS people do good on betas. Just those of us with MCAS and HyperPOTS - don't. Most of us have the flushing/paleness with our drops - at least I know - I do. This can be caused from either HyperPOTS or MCAS - you have to determine which. You know when I'm having a really bad eposiode - because I totally lose my color and feel my energy drain from me with my color loss. I get myself seated really fast - because - even though I don't faint - I come close. Being HyperPOTS is difficult - but, really most of us don't faint and that's a good thing. It just depends if you have the other things that can go along with HyperPOTS that things get really complicated.

With the high bp's thats why they are taking you off the florinef and midodrine -both could make it go higher. I have pooling and at the same time feel more vasoconstricted. Haven't had any official testing for it - but, seem to do better with things that vasodilate rather than constrict. I've done both - lots of trial and error. More error then anything. Midodrine is a definite constrictor.

It just takes time and patience. It sounds like you're about to get some very important answers.

Issie

[Anoj]

Thank you for your quick reply, Issie! You are right, I feel like I am getting very important info. I also found out that I'm not hypovolemic. The 48-hour holter monitor showed a "vagus response" - whatever that means, and still waiting on results from the sweat test.

I've tried beta blockers before, but they made me soooooo much tireder than I already was. They also made me feel short of breath. Truthfully, though, I didn't give them a good chance. This time, I will stick it out longer and see what happens.

Like, you, I rarely faint. I just have the excruciating pre-syncope, followed by about TWO MONTHS of recovery.

Now, how do you know if you have MCAS? How is it diagnosed?

I find it funny that I've read things about antihistamines as a treatment for POTS/MCAS, right? A few months ago, I came down with bad hives/itchy bumps and ended up on 2 different types of antihistamines. Now, I'm starting to wonder if I don't have a mast cell problem that is leading to the dysautonomia and and hives. I also wonder if I'm gluten intolerant.

Thank you again for your response.

[issie]

Hummmmm, sounds like a good indication. If that's true - then betas are not good for us with MCAS. (They were horrible for me and I tried about 5 of them before knowing that MCAS was one of my issues.) Make sure you talk to your doc about it and bring in info regarding that. There are a couple of sites that you can get some good info on MCAS from. PM me and I'll tell you what they are. If the antihistamines are a big help and they seem to help with some of your POTS symptoms too ----makes you wonder. It's hard to get a firm diagnosis for it - since most of the test come back negative. They can catch it if you're in a flare ---sometimes. There is a doctor (Dr. Afrin) doing biopsies through an endoscope and with a special stain and it is 90% effective to pick it up. Many of us just have a probable MCAS diagnosis - because - it's hard to detect with science.

My best advice is to start researching it and read as much as you can. There are a lot of really good reference papers on this site. That's a good place to start.

Issie

[Anoj]

why are betas not good for MCAS?

i got an improvement with the hives by taking antihistamines, but no noticable improvement on the dysautonomia.

what else is used other than antihistamines to treat hyper POTS? clonadine?

it's just so weird. it seems so counterproductive to me to take anything to lower BP.

[Libby]

Just thought I'd mention that the type of beta blocker can make a difference. Propranolol knocked me flat on my ***, but metoprolol I tolerate really well. Might be worth it to try a few.

Edited April 28, 2012 by corina

[issie]

Beta blockers degranulate mast cells and cause over reaction to histamines if there is MCAS as an issue.

Yes, clonidine, guafacin and calcium channel blockers. Mostly clonidine and guafacin is used for hyperpots if there is MCAS issues. (Not both, one or the other. I tolerated very small amounts of clonidine - but, didn't do so well on the guafacin.)

Issie

[Anoj]

Does clonadine/channel blockers lower the adrenaline like the beta blockers do? Or do they just lower BP.

[issie]

Does clonadine/channel blockers lower the adrenaline like the beta blockers do? Or do they just lower BP.

Lowers sympathetic system and bp - clonididine does.

Not sure about calcium channel blockers

Issie

[DoozlyGirl]

Anoj,

So glad to read you are getting some insight to your symptoms.

Maybe my story can help you sort out your own situation. Two years ago, I was diagnosed with orthostatic hypotension(38 point drop in systolic number) on my TTT, and had severe venous pooling. I don't meet the 30 beat criteria for POTS, but was having moderate orthostatic tachycardia, until I took the betablocker (zabeta). I took 1/4 of the pill each morning and within 4 or 5 days, my resting HR shifted from 110 to 40's and stayed that way for weeks.

It wasn't until I learned about mast cell disorders, that I realized that chronic flushing is a HUGE sign of mast cell degranulation. I've been flushing for 30 + years, but since carcinoid and pheochromocytoma have been ruled out several times, my docs never really pursued the flushing past those tests. I now realize flushing and blotching precedes my plummeting BP and now take antihistamines every morning and night and at the first sign mast cell degranulation (flushing or blotching). I also take singulair, which is a antileukotriene, and aborts my chest tightness during a reaction. I've learned it is important to take an H1 (zyrtec, clariten, etc) and H2 (zantac, pepcid, etc) at the same time to abort the reaction. While I can abort some reactions, I likely need other medications to stablilize my mast cells from being too sensitive, and I have been really super reactive lately. I've gone into anaphylaxis several times in the past few weeks. Its a good thing I'll be seeing Dr Afrin, a mast cell specialist in South Carolina, in 10 days.

If mast cells are triggered to react, they release 200+ mediators into the body, which can include histamine, leukotrienes, heparin, cytokines, tryptase and others. Depending upon which of these mediators is released, the symptoms can vary. One of the most dramatic effects of these mediators is the inflammation and vascular flushing, where the liquid part of blood will seep into the tissues, triggering the BP to drop. I had a skin biopsy in December which showed plasma cells in my skin. The diagnosis of a mast cell disorder is dependent upon finding mast cell mediators in urine or blood, or localizing mast cells in a biopsy.

I have many food intolerances/low grade allergies and am highly reactive to molds, yeast and candida. I also react to bread, but my allergy IgG testing shows I am reacting to baker's yeast and low grade to wheat, not the gluten itself.

If you are having issues due to over reactive mast cells, you may not have taken enough antihistamines to completely stop the reaction, which could explain why some symptoms continued on, while others subsided. Patients with mast cell disorders take high doses of antihistamines several times a day, as well as other meds to keep the mast cells from degranulating.

Best wishes in sorting out your symptoms,

Lyn

[Anoj]

It has only been 4 days since I started the beta blocker (at half dose), and I am feeling absolutely terrible. I'm ridiculously dizzy and practically bedridden. When I am upright, I feel like someone is pushing on my head downward. This is worse than before I was on the drug.

I don't know whether these symptoms are typical of beta blockers or whether this just isn't the right drug for me. This is why I've never stuck with them before. I'm going to stick with it at least until I see the doc again.

Is dizziness & fatigue common for BBs? Does it go away? The nurse said the fatigue would "level off." Not sure about this dizziness.

I still don't know about mast cells. Although it did occur to me that I was diagnosed with interstitial cystitis years back, and I believe that is related to mast cells.

Well, I will be sure to ask the doc about all this. I was just wondering if it is typical to experience these things on beta blockers? The dizziness is out of control! Ugh.

[issie]

Sorry you're having such issues - they weren't good for me and I must have tried about 4 or 5 different ones. We have to decide which is worse - what we're trying to treat or the side effects of the meds. If there is the MCAS issues - you probably won't have a whole lot of sucess with betas ---pay attention to your body and try to do as much research as you can. We seem to be able to sense things with our bodies and have intution that we should pay attention to. Hope you feel better soon.

Issie

[Guest Alex]

hi Anoj,

I had horrible dizziness and lightheadedness while on metoprolol and bisoprolol even at extremely low doses.Also I was constantly tired and practically bedridden. I'm tolerating propranolol much better though.

It might be a trial and error process till you find the right meds for you. From reading other people's stories, a lot of us here can attest to that.

good luck and if I werw you I'd try to communicate to the dr about the symptoms/side effects

Alex

[Anoj]

thanks. i'm just sooo frustrated. i felt this dr. and this med was going to be The Answer. i feel like i've tried all of the major things, and i'm starting to lose hope. after this guy, this med, then what? i'm just afraid that i am stuck with this for the rest of my life. it's been a year and a half. it's hard for me to keep my spirits up now. i just hate feeling hopeful for this one thing to work, and then it doesn't and i feel hopeless again. of course, i have hardly given this med a try, so i will keep trying for now. i just don't feel like it's going to work.

[issie]

There is a whole lot of trial and error. Don't give up. I've had this most of my life and I can tell you -----life is worth living - even with POTS. With time, you learn how to cope and tweak things and adjust your life. Keep faith that science is so much closer then it's ever been. Things in the last year has advanced and the word is getting out about Dysautonomia. Hopefully, before too long - they will get more of a handle on it and get us all into the correct subclasses with the treatments figured out for us. We might not get completely rid of this - but, we can have a pretty purple band-aid - we just have to find the right one.

Issie