In Hospital- Update

[mkoven]

I was discharged yesterday, as NW is not the place for autonomic dysfunction, my current diagnosis. And there was no point being parked there over the long weekend, when they couldn't do much more. I'm still kind of a mess symptomatically, so they gave me the option of going to a skilled nursing facility, if I find I can't manage at home. I guess I have 30 days to still take that option. Of course home is preferable, but sitting up for more than a couple minutes brings on all my symptoms, and my spouse can't be here around the clock. So we'll see how I do, keeping the snf open as an option if necessary. There was talk of admitting me to a rehab hospital, but those folks thought that my symptoms would prevent me at this point from really benefiting-- if I just end up lying on the floor most of the time. My ans stuff doesn't really seem to work like the ans problems of someone with spinal cord injury.

It's clear I need to be seen at a place that specializes in autonomic disorders. The ep I finally saw was upfront about this-- that I deserved to hear all the most recent treatment options from someone who really specializes. NW docs were for the most part upfront that this is not their area, that it's a niche specialty, etc. The ep I finally saw talked about helping me to get a referral to see Blair Grubb. But I know he's booked months out. I guess another option is the Cleveland clinic's syncope clinic, and possibly mayo? I called Cleveland, and the soonest they had an opening is mid-august. I would like to be seen soon, and I don't know how much further help the nw docs will be able to provide. I may end up asking my local Champaign docs to help facilitate a more prompt referral.

Except for the ep I saw, all the other cardios were insistent that I'd be fixed if I'd just take a beta blocker. Despite the fact that I'd been told by allergy not to do this. Even the ep thought this didn't make sense. He thought I was looking more potsy than typical for me because of the steroids and extended bedrest, but that I'm more ncs, and then it's not clear that Beta-blockers are the treatment--let alone my serious allergic reactions that BB's might prevent me from treating. But it was clear that even inhouse, the cardios weren't talking to each other. So the ep's report was not read by the cardio who very rudely was pushing me out the door yesterday, essentially telling me I was a bad patient because I wouldn't take lopressor. (I could go on about that unpleasant interaction, but I'm too worn out by the whole thing. Maybe later.)

The ep I finally saw inpatient finally got in touch with the ans endo I'd been seeing in Chicago. I don't want to be unfair, but she was rather scarce throughout this whole event. I guess it doesn't help that she's at another hospital. If I've learned anything this past week, it's that cross-hospital talk is no easy achievement. Anyway, following her lead, they've just added florinef to my regime. I'm not excited about this, but it seems the like the best, safest next step, and I have to do something. The ans endo has fit me in to see her this coming Tuesday.

I probably feel worse now because I'm still recovering from those two awful days of 240mgs methylprednisolone, stopped cold turkey, and basically being in bed for a week. But I'm pretty shaky and symptomatic. It's good to be home, have a real shower, sleep in my own bed, etc. Steroids really do a number on me--physically and mentally.

What an ordeal. The absence of awareness and understanding about ans stuff is astounding-- and this was in a major hospital, with an excellent cardio department, in a big city. The lack of awareness about eds is also astounding.

I'm still feeling rather traumatized by this whole past week. At least I can rest easy that I don't have heart disease. I guess that's the main positive outcome. And that was probably the safest place around to get a catheterization and have my allergies to contrast managed. So one mission accomplished.

BTW, I'm off plavix for good. The cardio through this was a nutty choice for migraine and migraine damage prophylaxis, with too many risks. He also thought that if I ever did need a stent in 20 years or so, it would no longer be very effective. I guess this is good. It was expensive, made me bruise and bleed like crazy, and with eds, probably not smart. So baby aspirin it is.

Michele

[ajw4790]

Oh, my! I am glad you are discharged, and did get some answers (but not quite enough...).

Sounds like you are on and off so many meds... That would drive me batty... among other things.

I hope that you are feeling better now that you are home and that you will get an appmt. with Grubb etc. soon that can help you out further!

Hope things are going better!

[MightyMouse]

Michele, as I've said before, hospitals can be dangerous places if you need to stay for a long period. Most practices in-hospital (and out) are pretty bad at cross-talk--each specialty seems to believe that they are the smartest, with the most correct answers. Only the *real* best doctors go out of their way to contact other specialists, to listen to their patients with rarer disorders b/c they may know more than themselves, etc.

Hang in there girly!! It's going to take a few weeks for the steroid havoc to back off. I hope the florinef helps you. Start small... half or 1/4 standard dose of .1mg daily is all I could deal with--and then we realized that was too much for my body, and I went to 1/8th of a tab until the nosebleeds hit and I had to stop.

As for getting into clinics that specialize in ANS stuff, if you're highly flexible with your schedule, see if you might be able to get on a cancellation list, to get a call when they have a patient drop their appointment. That got me into my own EP the very day I called the first time instead of waiting 6 weeks (as an established patient, not even a newbie!!).

Nina

[mkoven]

They gave me .1 in the hospital. I felt a huge adrenaline rush soon after-- not sure if related. Yesterday I took .05. It's also hard to sort out what's the florinef and what's my body getting used to the huge doses of solumedrol I had several days ago.

so Nina, are you then totally off the florinef from your recent flare?

I'm a little concerned about the steroidal properties of florinef-- namely tissue thinning (with my eds), any weight gain, and mood effects. But I have to do something more. They can't up my midodrine above 5mgs/4x a day, as it drops my heart rate into the 40s.

I'm also a little concerned, because the cath did show some "effacement by the sinuses of valsalva" on my aorta-- so some aortic enlargment, due to eds. In this case, they want your bp low, and often prescribe losartan to prevent further dilation. According to Nazli McDonnell, an eds researcher, noone with any aortic issues should let their bp get over 110/70. My bp is often low, scarily low, but is also erratic, and can swing high.

I think I need to find a cardio up on eds and ans-- because the low bp dips make me really sick, but I certainly don't want my aorta to dilate further. the nw docs weren't too concerned, but thought it should be monitored-- but I don't think they're knowledgeable about eds or ans.

So I need to raise my bp with midodrine and florinef, but keep it low to protect my aorta???? Or I guess just keeping it stably low-normal is the ticket--ha! How to do that???? Again, one contradictory mess. And no one is running the show terribly well.

[MightyMouse]

I had a double whammy of taking a nasal steroid for allergies and the florinef thinning my membranes in my nose, both of which contributed to the nose bleeding problems. I may restart the florinef again in a few weeks, but not right now. I'm now on nasalchrom to try to deal with with the swelling of tissues in my nose and sinuses w/o damaging the tissue in there.

Personally, I was always taken off florinef when on the major steroids, and then a few weeks after the steroid load, I'd go back to florinef slowly. I didn't get any significant weight gain--under 5lbs change, but I know others have gained more and had more side effects than I did (like headaches and bloating of extremeties). This last time, I was on that tiny .025 mg, and then every other day, not daily.

[mkoven]

So day 3 of florinef, .05. Can't say if my symptoms are much better, but my fingers are all puffy. Hard to pull rings off. Oh, and I get an unpleasant adrenaline surge within 2 hours of taking it. If these are the worst of the side effects, AND I feel autonomically better, then fine. But not sure yet how much better I feel.

Of course if I do get in to see someone at an ans center, maybe they'll want me off meds for testing????

[MightyMouse]

the puffiness could be from the solumedrol you've still got in your system... it will likely be weeks before it's fully out of you.

[mkoven]

One lovely effect I've noticed from the solumedrol (all 480 mgs over 2 days! That's the equivalent of 600mgs of prednisone. ) is that stretch marks on my lower abdomen that I got in my early 20s after some weight gain, that have been pale and quiet for years, are suddenly sore and pink again. I guess this is the skin-thinning effect of steroids? I hope this one settles down! Not that I was about to put on a bikini anytime soon, but NO THANKS!!! Vanity aside, I just hope that nothing too sinister is happening to the rest of my internal collagen--i.e. vessels, ligaments, bones. But I guess what's done is done. Besides eating well, taking my calcium, etc., anyone know if steroid damage is reversible?

[momofsara]

When Sara was give florinef, it just really did not help her all that much, and the side effects offset the benefits. She had so much swelling it was unreal. They finally took her off it (thank goodness) Susan

[MightyMouse]

Hi Michele, I'm very prone to stretch marks from any weight gain--I find that vitamin e oil helps to calm things down a bit. I can't always find what I want in the grocery or drugstore locally, so I buy it online from any number of places. I buy a lot of vitamins and other health stuff, like tea tree oil and e oil from Puritan's Pride. (that's were I also get all the stuff my doctor has me taking, like oral vitamin e and primrose to deal with my pms bloat and pain). Also, I use an inexpensive brand of shea butter cream, which they sell at drugstore.com--it's Tree Hut brand. I've occasionally found it at Walmart, but they consistently have it in stock at the drugstore.com website. It's thick and I put it on over my e oil sometimes--I've even used it on my face in the winter when my skin is incredibly dry and easily irritated. I put the e oil on immediately after a shower as well b/c it keeps my skin from freaking out.

BTW, I have no affiliation with any of the above sites, I just thought I'd share my $$ saving places since the economy here in the states is so bad and I'm trying to save pennies on anything I can--I imagine everyone here tries to do the same!

I still think all of your bloating is medrol related at least for a few more weeks, then you can blame it on the florinef if it doesn't go away.