mkoven

Everyone has suggested I try a poodle, but from what I understand, this may be better, but I may still react. and it would break my heart to have to give up a pet. I stupidly got a rabbit in grad school, and lo and behold became VERY allergic. Ricky the rabbit had to go live elsewhere. I seem to react to all mammals but humans! Even going to the zoo can set me off!

I would love a pet mammal, but am too allergic. I had dogs growing up, but have since become allergic. Even briefly petting my mom's dog makes my hand turn red, swollen, and itchy. It's sad. I love dogs. But I think no amount of meds will block the reaction.

I'll mention to my new neurologist, whom I'll see on 1/6. Apparently there is something called "neck-tongue" syndrome-- where the glossopharyngeal nerve gets compressed between c1 and c2. Maybe eds has caught up with my neck too?

I have to say that I saw one of the top allergists in the country in Chicago and MCAD was not a diagnosis on the table. She was not about to link ans and my weird allergic reactions. When I later was in the hospital for my catheterization, I had a consult with one of her fellows to go over how I should premedicate, given my allergy to contrast agents. He said it was indeed confusing that my ans symptoms sound anaphylactic--but he didn't link them. About the hives in the shower-- I also have dermatographism--an entitiy allergists recognized. Pressure, or a light scratch will give me welts--so I produce hives and histamines without an external allergen. That seems like some sort of ans-allergy link? This seems "cutting edge"--this connection. I have read somewhere on this site that ans docs recommend keeping allergies under control, as they worsen pots. And allergic reactions involve vasodilation. I also have both vasomotor rhinitis (autonomic) and allergic rhinitis--gotta be a connection in there somewhere! At this point, aggressively treating my allergies does not eliminate my ans issues. But leaving them untreated would probably worsen. And I go through periods where I'm randomly itchy with no clear external precipitant.

Initially all my ans symptoms seemed allergy-related. I would get lightheaded, rashy and itchy all at once. My summer of the allergic meltdown, 2006, I seemed to react to EVERYTHING. I test negative for mastocytosis, but I suppose mcad is a possibility. I take allegra and singulair all the time, and benadryl as needed. I do have allergies, with a documented IGE response, though. But my ans stuff and allergies feel linked.

My new ans informed pcp has recommended a product called nuun-- apparetnly they are little dissolving tablets with perfect electrolyte balance that dissolve in water, with mild fruit flavor. No sugar. He says some of his ans patients swear by them. Available at sporting good stores and online. will try them soon.

I know prednisone and florinef are different, but I had a &*^ of a time coming off prednisone two years ago, taken for allergic reactions. It took me a very long time to taper off, and I felt autonomically very wrong for months. Time of day may be a factor-- as Flop said, steroids are often given in the morning to reduce adrenal suppression. I was taking pred. 2x a day, which I think made it harder to come off. My pcp was shocked by how rough a time I had. I've since had short (1-2 days) courses of steroids to allow me to be exposed to contrast agents I'm allergic to, and usually have a bad crash for a couple days after. I don't look forward to the day I may have to come off florinef. I hope I'm at a low enough dose that it won't do too much long-term damage.

So my doctor thinks this is either a migraine aura or "glossopharyngeal neuralgia," from some sort of hindbrain compression. lovely. My mri didn't show chiari 1.5 years ago, but I've heard that's tricky to diagnose. I see a neurologist for migraines on January 2. (Currently in the middle of a migraine )

Melissa, I read your description of your ttt right before I had mine and was freaked! they were very humane at CC--told me I could stop the test at any point, and they were not trying to bring me to the brink-- just noting a trend. It wasn't that bad. the other testing wasn't that bad-- but we all react differently.

So sorry to hear about this. Is there someone you could talk to about a VERY slow taper---over months? I know it's hard to cut pills that size to less than a quarter. Maybe a pharmacist could figure out how to dose it out in eighths??? I've had a good experience with florinef so far, but haven't tried to cut or taper. I'm on .075. I hope it's not forever, but it s made all the difference between my being completely housebound and being relatively functional. My bp is about ten points higher than my baseline on it, but still acceptable. I haven't gotten the super-lows I used to get.

Thanks! That's very helpful!

I've been taking a small dose of klonopin before bed- .375, and I think it's affecting my memory, so we're going to try to taper me off, with a switch over to valium. I've been on it for about six weeks. My doc says that .5 knlonopin= 5 mgs valium, though I've read that it's more like 10mgs. I just don't want to crash inthe transition, as I've hear weaning off benzos is no fun. And if he's wrong in the equivalence, it might be pretty bumpy. I thought I might first try to cut down on the klonopin, to get to the equivalent of .25 klonopin, in case 5mgs really is the equivalent. i've had 5mgs of valium before and it doesn't feel as strong as the klonopin at that dose. Anyone now if going first from .375 to .25 is too big a cut, or if I should cut half as much--leaving crumbs of pills behind me? anyone else's experience?

Glad to hear it went so well. I also wouldn't worry about what she thinks of the fact that you've never been married. I second what Melissa said. It's great that you had a good time and can imagine repeating! I find that socializing in general is good for me both mentally and physically. Again, not that you should actually avoid discussing your health, but I find it really refreshing to talk about/focus on non-health issues with people who enjoy talking to me. And once you find you can trust someone, you can see how they react when you explain more about what you struggle with and how much of your life has been affected. It sounds like you are doing well enough, ans-wise, at least now, that you can stay upright for the length of the meal/conversation? In part when you tell depends on the point at which it might interfere with your plans? For example, if she suggests going somewhere that involves standing in a long line, you might need to say something, but could still be relatively general, like, "I have a hard time standing for long periods; I get dizzy; why not order tickets online, etc..." In other words, if she proposes something you can't do, I'd suggest an alternative that you can--so you show your interest in getting together, while still respecting your limits. I know that I get in big trouble if I agree to doing something I'm not really up for, so it's important to know what you are able to take on physically. Cause I really prefer to avoid ans meltdowns in general, for my own benefit, but also because I still find them embarrassing. I usually end up saying a little bit when I first meet someone to explain why I squirm so much (joints) and why I can't stay standing, or walk too far. Initially I just try to be factual.

I just wear it when I'm having a rough time. It keeps the blood from pooling in your abdomen-- not only legs.

You can go on amazon and type it in--some wear it for back support. Picture a corset with velcro.

Definitely get it checked. It's so hard with ans stuff, as it mimics serious cardiac stuff, but should be looked into. I've had all kinds of "atypical" chest pain, and a pretty exhaustive workup. It helps if the docs know about dysautonomia. Otherwise they don't know what to make of us, so much of the time! the ER can rule out something life-threatening, but usually don't know what to do with the ans, once it's clear you're not dying.

I'm thrilled to hear that! I hope this means there won't be too many lingering aftereffects, and that your kidneys, heart, and hip will go back to how they were? Take care and stay away from the ice!!! Best, Michele

I would still probably see about a sleep study. there so many different things that can be detected that can cause fatigue besides apnea.

I thinkit's odd when docs expect us to always display the same tendencies, to the same degree. Sometimes I have huge drops in bp, sometimes not. sometimes tachy, somtimes brady. a quick check on one day doesn't catch it. I didn't get the pots diagnosis till my tilt, because my tachy isn't usually instant--according to r. fouad I have "late tachycardia"--meaning it takes a little bit to kick in.

Not sure why I'm moved to write about this. Like many people, I've had an odd fascination with the tv show "biggest loser," and I think I understand why it's so appealing. The show makes it seem that with enough hard work, anyone can "get healthy" (and beautiful and rich and etc.) I'm not saying that people shouldn't do what they can to improve their situations, but the show makes it seem like what so many people want to believe--that will and hard work are enough. I guess living with a chronic set of conditions whose course I can't really control makes it seem a little ridiculous. Maybe the parallels between overweight and chronic illness are not perfect, but you see my point. Can you imagine if the show were about bootcamp to make us all work our tails off to "just do it?" and not have ans issues anymore? I think the show must be a success because it feeds into some shared fantasy of control over our bodies that is a fantasy at best. And it makes it hard for others to appreciate that will and hard work aren't always enough. We don't always control our bodies. Okay, rant over. (and I really wonder how the people on the show manage afterwards--like how many are diagnosable with eating disorders.)

I've been severely allergic before and know the feeling my tongue gets with this. It's more like my tongue has pins and needles in the back. I wonder if it's one of my many weird migraine neurological symptoms????

And I wouldn't overlook how much stockings can help. If you've never worn them before, you could try 20-20 mmhg strength, but you may not see real benefit till you get to 30-40 (or higher!) It's just that's a lot to start with.

I've intermittently felt like the back of my tongue is asleep-- it burns/tingles. Anyone else?

The tests they did on me were a tilt table, which showed pots and oh, even when on meds. they then did more testing to determine if the cause is neurological or vascualr. they did hemodynamic testing, to show where my blood pools when I change positions. They would have tested for blood volume, but I'm allergic to their contrast agent. they then checked autonomic reflexes--valsalva, sweat, hr variability. The upshot is that my reflexes are intact, but I pool too much because of poorly constricting veins. I also have a "hyperkinetic" heart. The new recommendations involved increased florinef to increase blood volume, cardiac rehab, and an abdominal binder after I eat. No explanation of my nocturnal chest pain, and no real interest in helping me figure out what that was about, which is disappointing. They were not as good about communicating betweeen departments as I might have liked.

I'd do a search on cleveland clinic. A lot of folks have been. I believe the consensus is that they are really good with diagnostics and less good for followup. I had a mixed experience. But the tweaking of my treatment has helped me quite a bit, though it seemed like minor tweaking at the time. I'm debating whether to make a followup trip, but don't know if I will get new ideas.