Seeing New Ep Cardiologist, Need Input From Mcad Hyper People

[Victoria]

I saw my new internist last week and I found him to be rather knowledgeable and very compassionate. After seeing my abnormal ANS test results from '03 he encouraged me to see Dr. Grubb.

He's concerned about my BP and HR being too high, so I have a new EP cardiologist consult and will wear a 48-hour holter monitor. I'm doing well with the H-1, H-2 blockers, but am tentatively planning on stopping temporarily so the cardio can get an accurate reading on my tachycardia, HR, etc.

What do you guys think? Should I go off them for the cardio @ the U or should I wait until I see Dr. Grubb? To be very symptomatic for the holter, how soon before my appt. should I stop taking the H1 and H2 blockers? The thought of stopping is thoroughly terrifying.

One more question: I take a tiny dose of Florinef — do any of you with MCAD take it? Should I be taking it at all? My BP is very high and very low. Are the huge BP fluctuations common with MCAD and Hyperadrenergic POTS, or do most of you have only high BP? This part really puzzles me.

Thanks in advance.

P.S. Had my skin cancer surgery yesterday and the surgeon was able to get clear margins. I'm a hurting unit today, but Yay for me!

[Sarah4444]

Hi Victoria-

So glad to hear your surgery went well and hope you feel better soon. I have hyperadrenergic POTS (confirmed by TTT and catecholamines) but mainly have low blood pressure, with only the occasional reading that was somewhat elevated (150/110ish) while sitting.

I take midodrine which helps a bit, but did try Florinef initially. While I was taking it my anaphylaxis episodes seemed to worsen, so I ended up discontinuing it. I was probably on it for about a month-6weeks. I have considered trying it again, but am trying to get my MCAD med dosages adjusted first, to see if that will provide enough relief. I'd be interested to know what you decide about Florinef.

With regard to stopping the anti-histamines, I can understand why you are worried. I would be very hesitant to stop mine unless I was medically supervised. Also, my pharmacist warned me that once you start taking them you have to taper off, as people develop neural hypersensitivity to histamines while taking these meds. But I also understand why you want to be as symptomatic as possible - it's hard to describe how severe the symptoms are if the doctors don't see them. Let's see what Julie has to say on this one.

[Victoria]

Sarah,

Thank you very much for your perspective. The verdict isn't out on the Florinef just yet. I think it makes me feel a bit better, but I can't say that with 100% certainty. Also, my internist is concerned that it may be making my BP go too high, but I think it fluctuates on its own. My BP is usually very low, but it can also get high-ish at times. When it does happen the systolic or top number is high and the diastolic is just mildly high.

Thanks also for letting me know about the taper and that people develop neural hypersensitivity to them. My thought now is to just humor my internist by going to the new EP cardiologist (with H-1 and H-2 blockers on board) and let Dr. Grubb have the final say. Seeing Dr. Grubb is my intent anyway, I just happened to get waylaid by my new internist.

Cheers,

Victoria

[juliegee]

Victoria-

I've been out of the loop with your progress...I was MIA for a while dealing with a GI virus. I am delighted that the MCAD regimen is helping!!! And, equally delighted that you have your skin cancer scare behind you- hope you heal quickly from that.

Tough decision. You are trying to prove you have MCAD, but would have to jeopordize your improvements by doing so. Could you involve the EP in your decision making? Have you or will you see him prior to the test? If not, consider calling his nurse and explaining the situation & ask for their advice. I had a 48 hour holter monitor when my MCAD was out of control. It showed lots of crazy runs of tachy, but my internist wasn't concerned as it wasn't atrial fibrillation. I don't think he understood that I wasn't exercising or even moving during the episodes. It was awful- they were so severe I would just about lose consciousness during the tachy.

I have lost a lot of confidence in cardiologists and even EP's. I hope my skepticism is misplaced in your case, but unless the doc is familiar with hyperandrenergic POTS and it's relationship to MCAD, I worry your test (even if you DID go off meds) may not be that much more effective than mine. I hope I am wrong.

To generalize, florinef is typically helpful for MCAD folks BUT (your doc is right) your BP can dangerously rise with it (& with your form of POTS.) I have used florinef in the past with great results, but my BP did bump up too high after a month & I had to stop. I think the trick for us is to use it sparingly (during particularly rough times) at the lowest possible dose to get an improvement- all the whilst monitoring BP carefully. For the record, my BP runs really low but is quite labile & can bump up during stress & postural changes when I'm going through a flare.

Oops, I forgot to add. It takes me 24 hours to begin to feel the effects of skipped meds. I think after that, I would go downhill fast.

Be sure to let us know what you decide & learn. All the best-

Julie

[Godsgal]

Hello....I have probable MCAD at this point and I was on Florinef for a while. Wow....I was so orthostatic on that drug. I thought it helped me for a while but then it was really making me go too high. And I would get low on it too but the highs were WAY too high and I thought I was dying on that stuff. So glad I'm not on it anymore! Perhaps lots of salt and water could do the trick if you decided to get off of it. That has worked for me.

Let us know how Dr. Grubb goes! Sorry you had to go through the surgery but so glad you are recovering now.

Jared

[Victoria]

Julie,

Oooooo, so sorry to hear you had a GI virus. I know how illnesses wreak havoc with my ANS and I'm assuming the outcome is the same for all of us. Glad to see you've recovered? and good to see you back.

Thanks for being delighted with me about my ANS progress and the surgery! The skin cancer on my face was basal cell with deep tissue involvement and I had a pre-melanoma on my leg. I have a lot of stitches and am in a decent amount of pain, but thank God the surgeon got clear margins.

Honestly, I don't think the EP I'll be seeing is worth jeopardizing my progress. I just looked him up and although he's an Associate Professor he looks pretty generic — his bio says nothing at all about the ANS.

Your skepticism definitely isn't misplaced. I've had a lot of holter monitors, several with long runs of tachy, some into the 200s. And I always have inverted T-waves and a messed up P-axis. But each time the cardios said I must have been running or doing heavy exercise. It mattered not that I told them I was bed ridden and the most exercise I got was possibly crawling to the bathroom or simply turning over in bed. They ignored my statements and/or acted as if I'd gone completely gonzo.

About the Florinef, I'm only able to take 1/2 of a 0.5 mg tablet. Any more than that and it messes with my ANS even more by giving me all day severe anxiety. My endo wanted to bump me up to 1.0 mg because my sodium is chronically low, but I said n-o to that. Definitely not worthwhile in my case.

Thanks for the valuable input, Julie, I appreciate it. I think I've made the decision to go ahead and see the EP at the UIHC to pacify the internist (so he can cover his derierre), but I'll save the important stuff for Dr. Grubb.

Hope you're feeling better and you're at least back to center,

Victoria

[Sarah4444]

Just wanted to add that I had the same experience with the holter - heart rate all over the place just from standing up and walking to the bathroom, but they don't believe it.

[Victoria]

Jared,

There are days when I wonder if the Florinef is helping me or hurting me. So sorry to hear Florinef didn't work out for you. Good advice about salt and water. I do take sodium chloride tablets, I'd melt without them, and I waste sodium in my urine. I guess we're all the same, but different.

I will keep you posted on how it goes with Dr. Grubb. I finally got through all of my medical records and am getting ready to fax them to his office. Whew, what an enormous task! Thanks for your kind words about the surgery, I really appreciate it. I got to take my bandages off today and I'm a bit shocked at how big and long the incisions are. Oh, well. At least they got it all.

Take care,

Victoria

[Victoria]

Just wanted to add that I had the same experience with the holter - heart rate all over the place just from standing up and walking to the bathroom, but they don't believe it.

Grrrrrr. I'll never understand why key symptoms and information from the patient are ignored or disbelieved. Gone are the days when <most> physicians embraced a challenge. Big sigh. . . .