Melach Posted December 11, 2004 Report Share Posted December 11, 2004 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 Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted December 11, 2004 Report Share Posted December 11, 2004 welcome to the forum. It's nice to meet you, too. You will find lots of support here. Quote Link to comment Share on other sites More sharing options...
Eillyre Posted December 11, 2004 Report Share Posted December 11, 2004 Welcome Ayelet! I'm happy you've joined our family! I hope we'll be able to provide support for you, especially on rough days like you've been having. Don't worry about your English -- I think you express yourself beautifully. If only my French was as good! As for the heat, is it a problem both inside (houses, stores, etc.) and outside, or more just outside? I spent a number of years living in West Africa when I was a child and there was often little that we could do about the 115+ degree heat, particularly outside. That sun penetrated just about everything! Hmmm...can't think of much advice for outdoors except stick to the shade if you can find some (that was a huge problem where we lived -- very few trees. Sometimes the closest things we could find was one of those thorn bushes with the 4 inch thorns. Hardly a comfort! ) You also might try carrying a small bottle of water with a spray top that you can use to give yourself a light spritz. It might help keep you a little cooler, or be used to help revive yourself if the heat exacerbates your symptoms too much. You might choose clothes made of fabrics that "breathe" (such as high percentage, if not 100%, cotton) when heat becomes a problem. For inside, you could try wetting your sheets and setting up a portable fan at night. Nights that the heat was intolerably high, my mom would shake our wet sheets very hard in the air (it always made a sharp thwack thwack sound), but then they were so blissfully cool. Of course, they were bone dry in about ten minutes, but it helped for a short while. One always hoped that sleep would descend at a faster rate than water evaporating! We also had all of our windows covered (with old cotton sheets!) to keep as much heat out of the house as possible. I'm not sure if your schedule allows it, but can you spend the hottest times of the day indoors, then venture out when the sun is a little more forgiving? As kids, we would usually spend about 11:30-1:00 doing indoor activities (reading, games, chores, etc.). Sorry I'm not much help -- you probably already know or have thought of these suggestions. For all I know, you may even have AC (ah, oh luxury of luxuries!) or ice water capabilities , so if some of the ideas seem a bit primitive it's just because we had to use low cost/low maintenance solutions where we lived. I'll ask my mom about any heat-coping strategies I may have forgotten. Welcome to the forum once again and keep well.Angela Quote Link to comment Share on other sites More sharing options...
Merrill Posted December 11, 2004 Report Share Posted December 11, 2004 Hello, Ayelet -- glad you found us! You'll like it here--we have members from all over the world. Do you know anyone else with POTS? The one thing many of us have in common is that other than friends we've met here, we know no one (or few others) with this disorder. That's one reason why the support and understanding available here are so fantastic.Anyway--to answer your questions--there was lots of discussion about dealing with the heat last June/July/August (and probably previous summers as well)... Here's a link to a conversation with lots of tips:http://dinet.ipbhost.com/index.php?showtop...1&st=&p=entryAnd here's a link to the short conversation about cooling neck wraps that was mentioned in the first conversation. http://dinet.ipbhost.com/index.php?showtop...1&st=&p=entryHope you find some suggestions here that can help. Your English is terrific, by the way. No worries there. Shalom,Merrill Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted December 11, 2004 Report Share Posted December 11, 2004 Welcome to the forum, Ayelet!Some people find those "Cooling Vests" helpful in heat. Some medications, like proamatine, may help as well. Have you seen our "What Helps" page? You might find some useful information there:http://www.dinet.org/what_helps.htmTake care,Michelle Quote Link to comment Share on other sites More sharing options...
briarrose Posted December 11, 2004 Report Share Posted December 11, 2004 AyeletWelcome!I'm glad that you found this website, it's been very therapeutic and educational for me and many others.I don't have severe problems with heat, maybe because I don't put myself into that situation anymore. I won't work in the yard, I haven't been hot tubbing in ages and I had to get an air conditioned car. During the summer, I grocery shop at night when it's cool. My place of employment always has the AC cranked up. Finally, I bought a little AC unit for my room. So I've pretty much changed all of my elements to accomodate me I have heard people talk about some cooling vests that they have tried. I also have a head wrap (bandana) that holds a little water and can be frozen to be wrapped around your neck and it looks cool (no pun intended.)I've never bought a cooling vest and I know that there is a website that a bunch of people use but I did a search and here's what I came up with. I would really wait until someone else chimes in about where they purchased theirs though.http://www.stacoolvest.com/http://www.heatfactory.com/FAQs/Cooling_Ve...oling_vest.htmlhttp://www.probuy.net/dir/59.htmlhttp://www.arcticheatusa.com/main2.html?OV...&OVMTC=standardhttp://www.helmetharbor.com/streetclothing...see/opening.htm Quote Link to comment Share on other sites More sharing options...
Ernie Posted December 11, 2004 Report Share Posted December 11, 2004 Hi,Welcome to this wonderful group. I don't know much about your country, I am from Canada, so here I use the air conditioning in my house for 5 months. My car also has air conditioning and heat (of course)!I dress in layers so that I can adjust my clothing when I leave the house. Ernie Quote Link to comment Share on other sites More sharing options...
BuddyLeesWife Posted December 11, 2004 Report Share Posted December 11, 2004 Mu husband keeps a couple of gelpaks in a ziploc bag in the freezer, the ones you buy at the drug store for back aches. It's rectangular, about 10" long, 3" wide and has it's own fabric sleeve that it slips into. He puts it across is forehead when he can lay down. We also have a couple of the neck wraps that you soak in cold water, the beads inside absorb and swell and you tie it around your neck for cooling - I have used the neck wrap myself. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted December 11, 2004 Report Share Posted December 11, 2004 Hello and welcome Ayelet! I'm trying to figure what time of day it is for you. I guess about 8 in the evening...hope you are finding some coolness in the evening air!When the heat gets to me, I try several different things. Try dressing very lightly, keeping well hydrated, using cooling gel packs, using a mist sprayer or dip your feet into a cold bucket of water, a personal fan, and if all else fails, staying in air conditioning. It is hard at first to stay indoors, but if it makes the symptoms lighten up, you will find ways to adjust. Try not to do your most strenuous work until the heat of the day lifts. I am sure you will find other good suggestions in the archives as was suggested! We are all busy trying to rediscover how to stay warm again since the winter here is cold. I probably have other things I do in the summer, but may have forgotten! Don't worry about your English, it was fine! Also, don't mind my grammar and spelling, okay? It is hard enough to gather my thoughts and put them here. We aren't fussy about such things here anyway. If we don't understand something you are trying to express, we will ask for clarification.Have a good evening, best regards, tearose Quote Link to comment Share on other sites More sharing options...
blackwolf Posted December 11, 2004 Report Share Posted December 11, 2004 Most everyone else has given you the same advice I would give. So I'l just say welcome to the forum. There are alot of wonderful people here with great ideas and lots of support.Welcome, Blackwolf Quote Link to comment Share on other sites More sharing options...
corina Posted December 11, 2004 Report Share Posted December 11, 2004 Hi Ayelet,just wanted to welcome you on the forum. Like you I was very glad to have found this forum. And it?s given me a lot of friends, very good advises, recognizing and, what I needed most of all, warmth. Best wishes from the Netherlands,Corina Quote Link to comment Share on other sites More sharing options...
Melach Posted December 11, 2004 Author Report Share Posted December 11, 2004 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 Quote Link to comment Share on other sites More sharing options...
briarrose Posted December 11, 2004 Report Share Posted December 11, 2004 I wish our doctor's were more familiar with Dysautonomia. They've heard the terminology but I don't think many of them can actually help treat the symptoms.I've been told that Israel is well known for their work in Dysautonomia. Isn't Familial Dysautonomia more well known in Israel. I think they have a couple of research facilities? Hadassah Hospital IsraelI believe there was a doctor from Israel doing research work at the National Institue of Health last year. Quote Link to comment Share on other sites More sharing options...
briarrose Posted December 11, 2004 Report Share Posted December 11, 2004 One more thing. If you go to the Search option at the top of this page and type in Cooling Vests you can see all past conversations. Make sure you check the time period of search to reflect older than 30 days. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 11, 2004 Report Share Posted December 11, 2004 Ayelet, welcome to our forum In all likelihood, doctors in your area are more familiar with dysautonomia because there is a genetic form which is predominantly a disease that is more common Jewish families (familial dysautonomia) than in non-Jews (like tay sachs is). It can happen in other families, but isn't that common.Yes, many of us here have the same problems with the heat that you do. Heat intolerance is one of the very common issues that we share. Nina Quote Link to comment Share on other sites More sharing options...
Melach Posted December 12, 2004 Author Report Share Posted December 12, 2004 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 Quote Link to comment Share on other sites More sharing options...
geneva Posted December 12, 2004 Report Share Posted December 12, 2004 Ayelet, welcome. We are glad you stumbled on to us! You may be one of the first to ever post that doctors know about dysautonomia in your country. It is a very frustrating situation here to have an illness that your primary physician or many specialists have never heard of before. The best is to find someone who is willing to learn from their patient who has done lots of research through sites like this one and from experience living with the illness.I have a lot of problems with heat and where I live it gets very hot in the summer so I have one of the cooling vests. I bought mine from www.coolsports.com and really like it. They also gave me a discount because it was for medical use. I don't know about some of the meds you asked about but perhaps others will have information. again, welcome! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 12, 2004 Report Share Posted December 12, 2004 AyeletHello! I just wanted to add my welcome as well. I also developed POTS with pregnancy (although I had it prior to that, just undiagnosed and mild). I am 36. These days I don't have a lot of symptoms usually, but I have to avoid certain situations to prevent onset of symptoms. I also cannot handle intense heat well and also just try to avoid being outside too much during summer days. Fortunately we do have AC. It gets very humid here, and my life in summer would be more difficult without it.I am glad, and interested, to hear that there is good care for dysautonomia patients in Israel.Your English is excellent, btw! Katherine Quote Link to comment Share on other sites More sharing options...
geneva Posted December 12, 2004 Report Share Posted December 12, 2004 Ayelet,My apologies....the cooling vest I have came from www.coolsport.net (not coolsport.com as I posted earlier).geneva Quote Link to comment Share on other sites More sharing options...
Jersey Girl Posted December 13, 2004 Report Share Posted December 13, 2004 Hello Ayelet,I was in Israel 12 years ago during Chanukah and think Israel is the most beautiful country. We visited the caves on the Mediterranean in Northern Israel and they were gorgeous.I am curious to know if you have been prescribed any medications and what effect they have had on you.During hot weather I carry cold drinks ( you could even freeze one the night before) and I drink like a fish. Any cold wet cloth around the neck will help too. I also limit my time outdoors during very hot weather and stay in airconditioning. Good luck, Martha Quote Link to comment Share on other sites More sharing options...
Eillyre Posted December 13, 2004 Report Share Posted December 13, 2004 Hi again Ayelet! Sorry it's taken me so long to get back to you! Glad you have access to AC and all the ideas everyone else has provided.I lived in Burkina Faso for 3 years and then we moved to Niger, staying there for our last 3 1/2 years in Africa. My parents were medical missionaries (Dad's a doctor, Mom's a nurse). The first 4 years, we spent a lot of time travelling around to different posts where my dad would treat patients (everything from malaria to polio, camel bites to sword wounds...very eclectic list of problems!) and help teach expatriot & national healthcare providers. He also spent a year working at a little mission hospital a remote area of Niger that provides free healthcare to anyone who can make the trip there. The last two years we lived in Niamey, the capitol of Niger, where my dad worked as a liason between the mission and the Nigerien government, helping to organize, revise, and oversee various medical programs and projects (AIDS, vaccinations, etc.). Mom spent most of her time taking care of my 4 siblings and me (education, malaria, etc.-- that was a full-time job in itself! ), teaching our African friends and neighbours how to take care of their medical needs (burns, sores, pediatrics, nutrition, etc.), and learning more of the different African languages and cultures. It was a fascinating time, although I never really considered it "unusual" growing up; I was 2 when we moved from NJ to Canada, where I have my first memories, and we left for Africa the following year, so I still consider Burkina & Niger my home more than the US. When I was little, I thought that deer and squirrels and robins were so exotic!!! Elephants, lions, giraffes, scorpions, cobras... those were common animals! I love living in and experienceing different cultures! I've never been to Israel, but it must be quite an experience, too! Thanks for the interest! With a smile,Angela Quote Link to comment Share on other sites More sharing options...
Melach Posted December 13, 2004 Author Report Share Posted December 13, 2004 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 Quote Link to comment Share on other sites More sharing options...
Melach Posted December 13, 2004 Author Report Share Posted December 13, 2004 Sorry, I lowered the dose of florinef b/c it was making me feel quite weak, as it was making me lose muscle mass. Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted December 13, 2004 Report Share Posted December 13, 2004 Ayelet,Welcome to the forum! This is a wonderful place to go and share our concerns and to offer support, or receive support. I can relate with you regarding the heat intolerance. The majority of us on this site can not handle the heat. The sun is a killer for me. London, England would be the best place for me to live. I live in Toledo, Ohio which has a change of seasons along with the upper midwest, and eastern United States. The Ohio and Michigan area's used to be swamp land at one time so it gets very humid in the summer time. Humidity is another hazard to people with certain forms of dysautonomia.I am diagnosed with POTS and a variety of cervical spine problems--i.e--> cervical spine stenosis, cervical cranial instability, and chiari malformation---and retroflex odontoid-AKA (tilted C1---putting additional pressure on the brain stem). There has also been a lot of study with the relationship of dysautonomia and chiari/or upper spine problems. EDS-(ehlers danlos syndrome)--a connective tissue disorder in which the colligin between the joints is too elastic or loose seems to be common in some dysautonomia patients---or chiari patients.It's interesting to see other disorders combined with dysautonomia---and it leaves one to wonder which is causing which. Some think chiari and upper spine problems are a possible cause of ANS dysfunction---and other medicals professionals think they are two separate issues.We have a doctor in Toledo by the name of Dr. Blair Grubb who has been to Israel on many occasions. I think he goes there to further educate---or teach on dysautonomia. I'm not sure. He is a ANS (dysautonomia) specialist, and many come from all parts of the United States to see him, some have come from other countries. He has done a lot of research on this subject. I am fortunate to live in Toledo and not have to travel to see him. However, I do know what it is like to have to travel to see a Doctor. I had cervical spine surgery in Chicago, and have been to Long Island NY for a second opinion.I have become somewhat of a medical nerd---meaning I actually like to read the research and find it very interesting. I am not very happy about having so much going on with my health issues----but on a more positive note, there is a lot of interesting reading on the subjects----LOL--- I'm to the point of rambling---so I need to stop. Mainly---I just wanted to welcome you along with the others on this site. You will find that the people on this site are very supportive during the rough times-----even during good times.Julie :0) Quote Link to comment Share on other sites More sharing options...
Radha Posted December 14, 2004 Report Share Posted December 14, 2004 hi julie, could you please tell me what kind of symptoms your cervical problems cause? i dont think i have the chiari, but i do have alot headaches and neck pain, and bulging of spine in places, thanksradha Quote Link to comment Share on other sites More sharing options...
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