Melach

Sorry, I lowered the dose of florinef b/c it was making me feel quite weak, as it was making me lose muscle mass.

Hi again. Thanks to Geneva and everyone else for suggesting coolsport.net...I am hoping to order one later this week. Martha, I'm glad you enjoyed your visit to Israel. December's a nice time to come; it's not too hot, and there's a lot going on. There are many caves around here, especially in Carmel, but I must admit I've never really been. I have seen some in Beit Shemesh (near Jerusalem), and remember them to be quite spectacular. As for medications, I take desmopressin because for a while my blood pressure was dropping dangerously low. This was making me feel completely exhausted, esp in the morning when it was lowest. I also take florinef, which I started about a year later. I believe I was originally put on it because I was losing a lot weight (and I was already underweight to begin with), and my doctor thought it had something to do with not retaining enough water/the salt I was eating wasn't staying in me...I'm not really sure. I did have to lower the dose because... The medication, along with a high salt and water diet and lifestyle changes seem to be pretty effective. Angela, wow! I am so jealous of you it sounds like you had quite an amazing childhood. My husband is originally from Cape Town, South Africa, although he moved here in high school. We visited once shortly after we got married and I thought it was beautiful. None of his family is there anymore and he isn't anxious to visit again, although I would love to. Wow, I need to leave for work in about 3 minutes! B'Ahavah, Ayelet

Yes, there are a disproportionate number of familial dysautonomia patients here in Israel. Briarrose, Hadassah, does have the biggest FD unit, although there are quite a few, I believe. However, other dysautonomias such as pots are ussually considered to be in a different category. I personally see a doctor at Recanati Autonomic Dysfunction Center (at Rambam Hospital), but the most famous one in Israel is at B'nai Zion hospital. Lucky for all us pots patients, Technion is doing a lot of lab research on these syndromes. They're the folks who "invented" the tilt table test (with help from Toronto, I think) and some of the medications such as midodrine. But there's other pots/dysautonomia research going on around here...especially at Soroka hospital and Weizmann Institute... Nina, I do think you have a point about the FD...I wouldn't be surprised if that's what sparked Israeli doctors' interest in other forms of dysautonomia. I personally don't know how much benefit I'll get from all this research, but it's certainly very encouraging to hear about all the new stuff going on every time I visit my doctor! L'hitraot, Ayelet

Thank you so much for all these wondeful suggestions! Angela, we do have air conditioning, as do most stores around here, but out of total curiousity where were you in west Africa? It must have been fascinating! Merrill, thank you so much for the past conversations; it's good to see that other people have this concern too. I don't know anyone else with pots, although it seems as if it's more well known in Israel. I'm not sure about the general populace, but if you mention "dysautonomia" to almost any doctor they'll know exactly what you're talking about. The cooling vests and neck wraps seem like SUCH a good idea. Has anyone bought one from a website that they were happy with? If not, I'll use one of the one's you found, briarrose. As for medication, do any of you know if proamatine would interact with florinef or desmopressin (what I'm on now)? Although 3 meds does seem an awful lot... Where I grew up the average summer day was 110 degrees farenheit and I was fine...the days I were complaining about last week were only about 80! (And I'm sure my husband must love it when the AC goes too low and I complain about the cold ) These have been great ideas, B'Ahavah, Ayelet

Hi, my name is Ayelet and I'm 34 years old. I just happened upon this site a few days ago while looking up advice/information on dysautonomia. I developed pots almost 5 years ago while pregnant with my daughter. I live in northern Israel right on the mediterranean, and am a lawyer. I like to say that the pots changed my lifestyle but not my life. It is pretty cyclical; each month, week, day, is different, but right now seems to be one of those rough spots. One thing that keeps worsening my symptoms is heat which is what I was originally looking up info about. It's not hot out in the winter, yet everytime I go outdoors in any heat (even if it's lying down by the pool) I feel horrible. Last week we had some particularly warm weather, and I have no idea how I was able to get through it. Anyway, I first off want to tell you who I am and that I was happily surprised to find this forum and wish I had found it sooner. Secondly, even though next week's forecast is much cooler, do any of you have any suggestions for dealing with heat? My doctors tell me the only solution is to avoid the outdoors, which I hate to do, but often have to in the summer. I have to go eat lunch, but I appreciate anything you have to say. Pardon any english mistakes; I consider myself fluent, but sometimes I'll write something completely incoherent. All the best, Ayelet

Hello, I too am new at this forum, and found it when I wasn't even looking! Maybe I will start a new topic like you did in order to introduce myself. I just find it so sad that you have to go through this just at the time when most children are really gaining independance. Hopefully the new medication for the blood pressure fluctuation will work for you. Best regards, Avital