mkoven

Well, allergy season is here. Last year it was my allergies that sent my ncs into high gear. They really seem to feed off each other. I'm really hoping to avoid a repeat. I've been told I have oral allergy syndrome, which means that my allergies to pollen make my body sensitive to certain fruits and vegetables. And I'm always becoming allergic to something else. As of this morning, it's cherries. Not allergic yesterday. Ate a whole bunch this morning--itching, tingling mouth, eyes, throat, sneezing. I just popped two benadryl. Last summer I seemed weirdly allergic to so many foods that sort of subsided when the frost came. I hope I don't have to go back to the days of the chicken and rice regime. (for over two months last year that was all I could eat without becoming super-allergic). I just hope I can avoid last year's allergic/ncs freakout. And hope I can keep eating some fruits and vegetables. I probably have to go back to the routine of not eating too much of any single fruit/veggie at a time--I became allergic to strawberries and raspberries after chowing down on a whole bunch when they were in season. (And then there's the allergy to celery, avocado, mango, papaya, eggplant, peanuts... sigh...) I'm on zyrtec, allegra, and singulair but I guess they just suppress the reaction, they won't change my underlying allergic-ness...

Eyes opened is generally a good idea when operating heavy machinery I had to scoot again, and this time went super slow. It helped. But it's strange. The first time this happened was a year ago, and I ended up in the hospital,as I got weird one-sided weakness after a superfast scooter ride. They checked me out for stroke/TIA. Of course nothing turned up, and I didn't yet have a pots/ncs diagnosis. But it's key that the prolonged, seated, fast-moving scooter ride preceded the spell of lightheadedness, head pressure, and transient weakness... And it's all reproducible...

thanks. I couldn't open the link though. Is it as if I were on some amusement park ride or like an astronaut???

Hi, I've noticed that if I ride my scooter too fast, my symptoms are a lot worse. Does anyone else have this? It's like the speed is doing something to the blood flow to my brain??? I suddenly feel woozy, faint, and short of breath, when all I've done is move forward by pushing a button with my thumb-- so NOT strenuous-- just "wind through my hair" fast....

There are many posts about mastocytosis and mast cell activation disorders. There is some recent research showing that edsers have more frequent and severe allergic reactions than would be expected in the regular population. McDonnell and Francomano are two of the researchers on the NIH study of connective tissue disorders who have found this. Some of their research was discussed in ednf's recent (fall? winter? ) newsletter. this is new research, as my local geneticist was unaware. I certainly have weird allergic stuff.

I had an anaphylactic reaction to gadolinium. Very soon after the injection, while in the mri machine, I got itchy and red everywhere. Didn't call out, though I should have. The radiologist noted how red my chest was. I soon wanted to faint, had my throat tighten and itch, mouth tingling. I'd had it before with no problem, but never such a large injection. they stopped short of epinephrine, as my bp never got too low, but gave me steroids and benadryl and it settled down. I was kept over night. I am allergic, though, to more substances than you can shake a stick at. I remember the solution was very cold and was injected superfast--- that might have made things worse.

Thanks, Melissa! It is a relief for once to have a health problem that's more annoying than anything else--but annoying it is. If I'm not better by tomorrow after my third night of otc treatment, I'll call and see if they can call in something stronger. Like many of you can surely relate to, I find going in to the doctor tiresome and draining. But as this is (for once) a relatively easily treatable thing, I guess I don't have to dread the doc so much...

Sorry if this is too gross... As part of this month's round of lovely pms, I've developed what I think is a yeast infection.I've had a couple of these in my life, but usually in response to meds--such as antibiotics or steroids. I've started the three day otc treatment (miconazole?). I applied the second dose last night. and I have to say, it's not a whole lot better. One more dose tonight... Does anyone know how fast the treatment is supposed to work? I'd really prefer not to have to go to the doctor. Does anyone know if there's another otc antifungal that might do the job? I think my waist-high compression stockings plus the heat are maybe not to blame, but certainly make things worse. So I've switched to thigh or knee-highs till this settles down. Sorry for the graphic details, but the itching is making me crazy!

In my experience, you really do need antibiotics for a bladder infection. Did the doc do a culture to determine what the bacteria would respond to? Could you ask for a different antibiotic? Bactrim is one of the few I'm not allergic to, and it usually clears up an infection for me. But the doc may think your uti will respond best to cipro... I understand your reluctance, though. The natural route comes in for avoiding utis. I have to drink a lot of fluids, not too much caffeine. Cranberry juice or extract can help ward them off. I hear it makes it hard for the bacteria to stick. I drink the kind sweetened with splenda, diluted with water on a regular basis. and if my bladder feels irritated I really double up. there have been times when I was convinced I had a uti, but the culture was negative. my bladder was just really irritated and i needed to drink and drink to get it settle down. And till you feel better, the more you drink, the better you'll probably feel.

Hi Persephone, I have no particular words of wisdom, other than definitely call your doc. As recently posted, I've been hunting for a med for pms and to some extent pots, and cymbalta was the next to try. I hope you feel better soon. Hugs, Michele

Good question. There is a very recent thread about this just below. See: http://dinet.ipbhost.com/index.php?showtopic=8530 Michele

I also had a not-great experience on memory foam. I found it hard to get out of, but more importantly, itdidn't support my lower back enough, so I'd wake up with sciatica. It had felt good in the store though... Fortunately, there was a 90-day return policy. We have a California king, with my side an inner-spring with some cush on top, and my husband's has less cush.

Just called the doc and he wants me off the prozac, as he didn't like the sound of my reaction. He wants me to wait till thursday when the prozac is out of my system and switch to cymbalta, 15mgs.. I don't like this musical-drug game...

So my doc decided to switch me from lexapro to prozac, as I'd developed a twitch with lexapro. this is primarily for pms, but if it helps pots, great. Well I took my first dose an hour ago-- just 5mgs-- and I feel awful. Heart racey, adrenaline surges, hyper, anxious, hard to focus. I could try to split the 10mg tablet again to 2.5, but frankly think it would completely disintegrate. Do I wait it out for a couple days before calling the doc if it doesn't improve? My pms is not fun, but my current feeling is much less so ):

I'm not sure about the amounts...I just know that in the US, the blood test is called rast testing...an allergist should know more. Hope you get some answers. Michele

Hi, Not sure where / how to post this. I know some people here also have eds and are members of ehlers danlos national foundation's site. I've been trying to log on for forever to the message boards at ednf and it hasn't been working-- and no response from their office? Anyone else?

It's getting hot and humid here and I'm really wondering how I'll continue to tolerate compression stockings as the mercury rises. Any suggestions? Of course, on top of the stockings, I have my lovely ankle, knee, and pelvic braces for my sloppy eds joints. I'd love to wear shorts, but would look truly silly.

Hi, My allergist told me I should really avoid beta blockers with my severe allergies and some asthma. Has this come up for any of you? I think in part the reasoning is that epipens don't work so well if you take bbs, but that they can also actually make allergies and asthma worse??? Thoughts?

Thanks you guys for your support and kind words. Few people appreciate how hard it is to deal with this ongoing condition on top of everything else. This is really a wonderful group.

In December I reported that the college voted in favor of my tenure case. I found out on Wednesday that the campus, the final substantive level, voted for me too. This means that I finally, officially have some job security, and so much of the stress I've been living under for the past years should get a lot better. Huge relief. I just want to be healthy enough to enjoy.

Tessa, I second Nina's advice (indeed, long lost twin!!!!). I would get referred to an allergist who can help to determine which agents you are reacting to. I also keep a supply of benadryl (diphenhydramine, in case it's called something else in Spain?) and 2 epipens in my purse. I've never had to use the epipens, but it gives me peace of mind. My husband justifiably gets mad at me if I forget them. I'm not good about wearing my medicalert bracelet. I don't have a good excuse... For some reason (knock on wood), I seem to tolerate local anesthetics. I hope that continues. But I have allergies and/or other adverse reactions to 30 some drugs. Though I've been told I tend to react to meds that are considered high-allergy potential-- mostly antibiotics and pain meds, with some others thrown in there... So, I would definitely ask for a referral to an allergist. If they test you, they are fully equipped for any reaction. They may also be able to do blood testing, which is safer, though some dispute if it's as sensitive.

I've caught some annoying bug-- much hacking, sore throat, congestion, aches, low fever. I was curious if people here do okay with decongestants, such as pseudoephedrine. I'm a little nervous, since it pushes my bp up on the high side, but I'm really uncomfortable, and want to avoid my usual post-viral sinus infection. Curious about people's experiences...

I hope you can get some answers soon. It is my understanding that mast cell activation disorders are diagnosed clinically... I could be wrong. And I think the treatment is antihistamines with easy access to epipens-- as well as avoiding triggers. There are also mast-cell stabilizers, like gastro-crom and nasal-crom. I'm really interested in this link between pots and allergic-type responses-- as they seem very connected in my case. I think you can have the rast blood testing at any time. They mix your blood with the allergen to see if it reacts. I think there's some controversy over which is better-- skin or blood tests. But blood tests are safer. When I went through my allergic meltdown last summer, they put me on prednisone for 6 wks. That was awful-- so I'd say if you can steer clear of steroids, you're probably better off. I saw a high-powered allergist in Chicago who got me off prednisone, replacing it with very high doses of allegra, zyrtec, and singulair, with benadryl as needed. She thought that was safer than steroids. For a couple months I was on 20mgs of zyrtec, plus 360 allegra, plus singulair daily, plus 25-50 benadryl as needed. It helped. But it took months until I felt recovered from the prednisone taper. i think doctorguest mentioned that sometimes these reactions are allergic and sometimes not-- or IGE mediated. They can also see how much IGe you have circulating that gives some sense of how allergic you are in general. I also have something called dermatographism-- if I scratch my skin or even apply pressure, I get a bright red, itchy hive in the shape of whatever I came into contact with. When my reactions are over the top, it's pretty impressive, and I can even feel my throat tighten. Even a bp cuff will make me break out when things are bad. We still don't get what happened to me last summer. For 2 months I seemed to be allergic to almost everything I ate-- except rice and chicken. That gradually abated. Though I still have a number of food allergies. Lucky me, I seem to have something called "oral allergy syndrome," where my body reacts to certain fruits and vegetables because it confuses them with pollen. So I still can't eat celery, strawberries, raspberries, mango, eggplant, avocado, and probably some others. We're still not sure what role my environmental allergies play, but we've since gotten into heavy-duty allergy busting. We have hepa filters in all the rooms, an extra-thorough filter on our hvac. When things are bad, I wear a dust/pollen mask, which seems to help.

I think you can get rast testing (sp.) through a blood test. I can't do skin tests because I'm always on antihistamines and my reactions are too violent.

I've had some strange anaplylactic-seeming allergic reactions over the years and have epipens that I carry with me. One bad one was after an mri, but I did get a contrast agent.It was one I'd gotten before, but not in such a large amount, injected very fast and while it was super cold. Soon after I got itchy everywhere. I didn't call out from the mri tube, because I thought it was just itching, and knew it would mean the test would ahve to be redone. (mistake). I turned red and faint after and had to stay overnight in the hospital with benadryl and steroids. My first reaction like this happened without a clear inciting agent. I had just thrown up. Right after I vomited, I started itching violently from head-to-toe, turned bright red, and started gasping for air. I was nineteen at the time and had no idea what was going on or how dangerous it was. It did pass. It was almost like my body's reaction to throwing up was to have an allergic freak out. I've tested negative for mastocytosis, but have been told I may have some strange mast-cell activation problem. The neurocardiogenic syncope and the allergies are a confusing combo, as my bp drops and I want to faint, and sometimes it seems triggered by allergies and sometimes not. Maybe a trip to an allergist would make sense? Last summer I had a weird allergic and ncs meltdown. We never really got to understanding the allergic part-- as I do have specific allergies with a high total IGE, postive rast test to a bunch of environmental allergens, but sometimes just get itchy,red all over, and faint for no clear reason. My serum tryptase was always normal. Sometimes it almost seems like when my bp drops too much from ncs, my body's response is to get itchy (??!??) I am on a regular regime of antihistamines and have an epipen that I carry with me. I tolerate the antihistamines and have never used the epipen. Good peace of mind, though.