mkoven

That is awesome! Fabulous news!!!!

No chiari on regular mri. Just saw a neurologist who is going to do a mri/mra of my neck to see where the nerve that goes to my tongue is getting pinched. But she doesn't seem to know too much about eds, so I wanted to get on the site.

I 've now tried firefox and explorer--no go! I don't have problems otherwise. Could either of you paste in the email or phone number of someone from the ednf or the site? I'm having eds-related neck issues and wanted to look back at info on cranial settling. Thanks!!! Michele

I can't even pull up the site-- it times out. Maybe I need to use a different browser?

I had hemodynamic testing at Cleveland that compared blood flow to heart sitting and lying. Echocardiograms were done in both positions, as well as some sort of pictures in both positions after I got a radioactive tracer.

Some of the otc creams are for less than 7 days--like 2 or 3. I agree. Don't suffer!

I know a number of folks here have eds. I haven't been able to get on ednf.org in weeks. Anyone know what's going on?

I think people react to different meds very differently. Florinef has brought me from bed and house bound to pretty functional. I'm not saying it's a wonder drug for all, but for many it is very helpful. It has its risks, but many drugs do. I have a hard time with many drugs, and it is one I have done well with. It may not be appropriate for some people, but that's true for most drugs. My first ans doctor considers it one of the safer drugs to try first.

midodrine is prescription. Many docs don't have experience with it. I find the brand name works better than the generic, but is expensive. It's on the "what helps" list.

Sounds like you should go see a doctor specialized in dysautonomia. Where are you located? Something else you could try are compression stockings and midodrine. The main downside with stockings is that they are hard to put one. And midodrine is very short-acting, so if it doesn't agree with you, it will leave your system fast. I'd try that before sudafed. Midodrine lowers my hr--unlike sudafed. I'm on florinef and started it after midodrine-- for me I think they work together.

Flop, Stories like that make me so angry! I wish people wouldn't make assumptions if we don't look visibly sick. There are so many invisible disabilities. I don't get too many looks, as I do use a walker, but I do get a lot of nosy questions, and patronizing comments. I wish I had the perfect comeback for someone like that. (I've recently joined a gym to continue my cardiac rehab on my own closer to home with a hr monitor. The attendant makes so many well-meaning but inappropriate comments since I have a walker. It's so odd to see people react. Also , the building that I currently live in has a door-person. On bad days, my husband takes me in the wheelchair. And it's funny to see people flip. I just say, "I'm having a bad day," and leave it at that. So making a disability visible also has annoying consequences. I don't like to be patronized, and I don't like to tell strangers my life story. On the other hand, a little public education on the range of disabilities and a little tact would be nice.)

I got a hang tag in Illinois. I'm in DC for the year, and have no problems. I just had to mail the form into the dmv. I've never gotten an ADA card. My tag was for my joints, but I use it for my range of symptoms, since my diagnosis is EDS, the cause of my dys and pain. I've never had to explain anything, just mail in the form with doctor's part filled out.

Another thought-- can you get stronger stockings/more compression, since that helps you? I now use a pair of 40-50 mmhg stockings on bad days, and it really helps--significantly more than 30-40.

I've also had atypical chest pain with ans symptoms that no one has been able to make sense of, after a very extensive cardiac workup. I hope Mayo can help figure out what's happening. I think I remember reading about someone else here who had high bp spikes with her dysautonomia and got help at Vanderbilt. I only occasionally spike high, after I've been low. But I know how frustrating and scary it can all be.

Have you and your doc talked about florinef? For me it seems to work in a complementary way with midodrine and has made a big difference in how I feel. I'm on a small dose- .075 and have been since the summer. I still flare around my period, but it is otherwise a night and day difference in how I feel. Everyone is different, but I find it really stabilizes me.

If it's allergies, not asthma, I think nasal steroids are likely to be okay, and unlikely to have systemic effects. I take flonase with no trouble, as well as allegra and singulair by mouth.

I completely understand how miserable sinus infections are. Can you be seen by an ent? I still have a sinus infection lingering, though am trying to avoid more antibiotics. I have felt noticeably improved since adding 1 percent baby shampoo to my irrigation solution (see earlier posts). I still feel kinda bad when I first wake up, still a lot of nose blowing, some but less is thick/discolored. I fo feel less overall crummy/sick/tired since adding the shampoo. Apparently it not only acts as a mild germicide, it also breaks up the gunk somewhat more effectively. I wish I had some more suggestions, but seeing a specialist is probably the way to go. I read that some docs will prescribe antibiotics to dissolve in the irrigation solution, so that it goes directly where it is needed. I've heard that systemic antibiotics have a harder time penetrating where they need to go. I also feel like part of my problem is that the air is so dry in the heated apartment. We haven't bought a humidifier, but I wonder if it would help. All the decongestants aren't spiking your bp, as I see you also take midodrine? My doc said no sudafed... But if you tolerate it, that's great. But i'd see if you can get in with a good ent.

YES! It was strange. But I do feel a little better. Will keep you all posted.

Here's the reference: http://www.ncbi.nlm.nih.gov/pubmed/18284857?dopt=Abstract If I don't feel better by Monday, I'll ask you about stage 2 neti. I googled and it looked a little involved.

SO the doc had me stop bactrim and see how I do. I felt better, infection-wise for about 24 hours, and then started feeling crummy again. But I don't know what antibiotics to try next, and am hesitant! I looked online and saw that some people add 1% baby shampoo to their sinus irrigation solution. It supposedly helps break up the "biofilm" (yuck!) around all the gunk in sinuses. I found a bonafide referecne to what appears to be a legitimate study. Anyway, I figured it's relatively harmless and will try that for a couple days. I'll let you all know. I just want to get over this infection and NOT have to take antibiotic

Arrgh! After second dose of bactrim, red, itchy blood shot eyes, and intense bladder irritation. talked to doctor who said to stop bactrim. We'll see if I can lick the rest of the infection without antibiotics--but I may be $%^#ed now in terms of antibiotic options. Nina, you'll have to let me know what options you are given by infections disease specialist. I hate taking antibiotics, as I always end up with new intolerances.

Thanks for your input! Nina, sorry to hear about your infection. I"ve been using the neti pot and mucinex since the start, but I guess it was destined. At first I was too congested to get any liquid to pour out. I had been feeling a little better, but had nonetheless plateaued--feeling lowgrade crummy, sore nose/throat/face/full head, and "discolored secretions" (sorry). I just hope I don't develop any bactrim issues-- as my options are limited. What's wrong with ketek?

So on day 14 of the cold that morphed into a sinus infection, I've given up and agreed to antibiotics. I'm allergic to penicillin, zithromax, doxycycline, and leary of the quinolones, because of the risk of tendon rupture and my eds. So I've started bactrim-- which I've taken before for UTI's, but before my ans issues. Any experiences, good or bad with bactrim?

In earlier posts it looks like there were some good suggestions. Myself, I would first bring it up connected to how it might affect some activity you might do together. So if she were to suggest something that involves a lot of standing, for example, I'd say something like, "unoftunately, I have a condition that makes it hard for me to stand longer than such and such amount of time. I get really lightheaded...." and then see how she reacts.... and then later you might say, "remember how I told you I have a hard time standing? It's actually connected to a more longstanding condition I have that has really affected me." and then you sort of have to play by ear what more you say, based on how she reacts. Personally, I wouldn't tell her everything all at once, as I think getting to know and trust someone is usually best done in a gradual way-- as much as one might be tempted to rush things, either to get it over with and see if it's a dealbreaker, or to hurry the "getting-to-know-you" process. I'm sure she has things that she is concerned about your finding out about her. So I don't think there's a single moment when you should do it all. I would start off with a pretty factual description of the condition, and a brief mention that it has affected you a lot. As you get to know each other more, you can let her in on how profoundly it has impacted many areas of your life. Or you could mention in passing that you have to go to a doctor's appointment... and then later elaborate. And I wouldn't feel ashamed of having a chronic condition. this is something that has been beyond your control. It's very different from "fessing up" to something like having been in prison or substance abuse--(not that those are simple either. I just imagine those would be even harder to disclose.) Lots of people have something that is awkward to talk about...even something like taking antidepressants--which is incredibly common, and something that might be hard to talk about to a potential partner. And I guess the problem with ans stuff is that it is so often invisible. So you have to decide. My walker immediately announces to the world that something is up, and invites curiosity. If you ever used something like a seat cane, this might have a similar effect of naturally making the problem more visible, so easier to discuss? but I think this point in dating is hard for everybody. It's terrific that you're doing this.

Because of my dermatographism (hives from skin pressure), I can't get skin testing, as I'll get a welt from the needle alone, and they won't be able to tell what I'm reacting to, I've most recently had rast testing--allergy testing trhough a blood test. No risk to you at all. They see if some of your blood reacts to the presence of the allergens. I think it's more expensive, but they do it if they fear a severe reaction or if they think skin testing won't cut it.