Pots & Dysautonomia Around The World

[Altruism]

I am researching POTS in several languages and in some of them I cannot find any information for Postural Tachycardia or Dysautonomia. Then I search for neurasthenia, but the information is quite outdated.

So, how does autonomic dysfunction / dysautonomia translate into your language (if it's not English)?

In my mother tongue - Bulgarian - the terms POTS and dysautonomia do not exist. The closest I've seen is vegetative (autonomic) dystonia оr вегето-сосудистая дистноия (vegeto-cardiac dystonia) in Russian. Do you think it's the same?

[bellgirl]

That actually sounds like Multiple Systems Atrophy, or Pure Autonomic Failure with Parkinson's to me, which are both forms of dysautonomia, but more severe. You may want to gather information either from DINET, this site, or Google National Institute of Neurological Sciences.

[YolaInBlue]

I'm originally from Poland and have very hard time explaining this condition to my mother. She asked me how it translates to Polish because she wanted to find some literature on it. ANS disorders go under "zaburzenia autonomicznego ukladu nerwowego" but it's a general term. I can't find anything on POTS or orthostatic intolerance at all. I'm sure a lot of people are misdiagnosed in Poland.

[Altruism]

kimbellgirl, thanks for posting. Actually, I think it's the other way round - vegetative disfunction in Bulgaria is considered a very mild disorder due to stress with sweaty palms, nervousness, etc. and not a debilitating dysautonomia.

Yol, same in Bulgaria. I can't find any info anywhere. I'm sure there are so many undiagnosed people... I might create a forum/website and spread awareness.

[jknh9]

POTS in Japanese is 体位性起立性頻拍症候群, pronounced "taiiseikiritsuseihinpakushoukougun," NCS/NMS is 神経調節性失神, "shinkeichousetsuseishisshin."

Surprisingly, I have met several Japanese people who have heard of this. None of them really knew what it was, though.

I recently found out that autonomic dysfunction has been researched in Japan since the late 1950s. One support group website says that "even though these disorders have been studied in Japan since the 1950s, they have only recently come to the attention of medical researchers in the US and Europe" (my translation). I was really surprised to read that! I'm going to have to look into this some more.

[YolaInBlue]

Jknh9, that is very interesting. I have some friends in Japan. I was about to take a trip to Japan when I got sick last summer. I had to cancel everything. One of my friends actually knew what I was talking about and said that autonomic dysfunction has been researched in Japan (advised me to come to Japan for a better treatment, too). I was very surprised.

I'm working on getting myself well enough to take that trip. Just vacation, no doctors. I'm scared of a long flight. I hope I'll be able to go and enjoy it without emergency doctor visits. It's good to know Japanese name of my condition, just in case. Thank you so much

[Ht888]

Hi, I'm Russian and yes, вегето-сосудистая дистноия is dysatonomia; they also call it нейро-циркулярная дистноия. I've been doing a lot of research on Russian Internet in the past two months and actually flying out to St. Petersburg in March to see a Russian specialist. The interesting thing is that it is estimated that up to 30% of Russian population have dysatonomia. It's a very common condition in Russia, however POTS is nor specifically spelled out. I also found out that Russians are attributing dysatonomia to something called dysplasia of connective tissue. They have identified two types: differentiated dysplasia of connective tissue (EDS, Marfan's) and undifferentiated type. They think that 25-30% of adult population have the undifferentiated type. They have criterias and algorithms for diagnoses, including lab work, plus different treatment plans. And joint hypermobility or pain is not considered as a main criteria for diagnoses. They look at many things, like body proportions, ears, length of fingers, internal organs abnormalities, varicose veins. This information certainly explains why the geneticist that I saw said that I have "atypical" EDS. Plus I could never understand how my husband (also from Russia) can have the same symptoms. I'm really hoping that they can help my family in Russia. Believe it or not, they have sanatoriums where you can go for 2-4 weeks to get treated for dysatonomia and this dysplasia. They are also very much into the preventative measures for kids who are at risk (i.e. parents with dysplasia/dysatonomia). I'm very excited about this info and will share if its helpful.

[ramakentesh]

Apparently there is a fair bit of work on POTS in chinese if that is any consellation. But that is interesting.

[Angela]

HT888: Добрый вечер from AZ U.S.! that is very interesting your statistics of dyso in Russia, I am genetically based 100% from the baltic region on my mom's side, waiting to hear from23&me about my dad's side (I suspect irish tho, lol) I used to read/write/speak cyrillic but have lost a lot of knowledge due to deconditioning (don't know a lot of people who speak it out here) (and it's been over 10 years since I tought myself)(and I have pots, that should explain itself yeah?...I don't remember so much anymore).

Я так устал, мои глаза слипаются. hope that was close anyway....zzzzzzzzzzzzzz

sweet dreams:)

[ramakentesh]

Cool! that language looks so crazy to me - no offense its just my ignorance of Slavic languages

[Angela]

actually a very beautiful language.....pronunciation is not how it appears. I also tought myself short hand and egyptian Hieroglyphic handwriting sometime between when I was 10 to 13 years. don't remember a lick of either tho

[Ht888]

Angela, I'm quite impressed with your Russian ) My daughter is 13, she was born in the US, but spent 5 summers with my parents in Russia. She can speak and understand Russian maybe 60%, but can't write. I'm actually considering moving back there if my trip in March shows that they have a good care system for these conditions. So far info on the Internet looks very good, especially their programs for kids. I'm seeing one of their top geneticists for this dysplasia and want to get a referal to a neurologist for dysatonomia while we there.

[Altruism]

Здравей, Анджела, българският език е много близък до руския, нали са все славянски езици. Хубав уикенд!

Я попрoбвала поговорить по болгарскому язику, я думаю что Анжела можно разбирать. ) Прости мои ошьiбки!

LOL I've never used 3 languages in 1 post before. Anyway, I find it very useful too. Do you have any idea why 30%?! of the Russian population has some form of Dysautonomia? Is it in the genes, in the air, the vodka ?

[Angela]

HT888 I would LUV to hear what they have to say when you go, please let me know. My Russian isn't so good anymore:( I used to understand quite a bit and speak but it was more formal, as most books don't teach slang terms and that is how most people talk anymore, languages evolve from what the textbooks teach. I used to write it well, cursive and regular but only know certain phrases right now, I plan on studying back up on it because I like to challenge my mind:) and language is fascinating. Used to want to work as a translater planning on being completely fluent but that plan got dropped somewhere down the road awhile ago.

[Angela]

hey altruism, is the accent the same? hope you had a good weekend too! From what I know different parts of Russia, although the same language have completely different accents so even tho the same language essentially it is hard to interpret accent from one part of russia to another! LOL, I guess any country may be like that, i.e. ebonic, amish, jersey, way down south US LOL

[YolaInBlue]

HT888, I hope your trip goes well. Just like Angela, I am curious what dysautonomia specialists in Russia have to say. If you find a good neurologist in St. Petersburg, please let me know. We have friends there, I'm just not well enough for a long flight yet.

If you decide to move back your daughter's Russian will improve very fast. I took my girls to Poland for a year, to attend Polish schools, learn some language and get to know the family.They were 10 and 15 at a time. They both spoke Polish quite ok for American born children, but my younger one couldn't read it or write it. After a year in Polish schools they are both fluent.

I had Russian in school for several years. I can still read and understand most of the conversation but it's hard to speak it when you're out of practice.

So good to know different languages, though. I tell that to my girls. I'm learning Japanese now.

[jknh9]

Yola, I'm scared of the long flight, too. I did a long haul flight from Tokyo to the USA and it was pretty bad. I have been feeling better and I'd like to go this year but I don't know if I have the courage. I hope you are able to! I would be interested in seeking treatment in Japan too, or at least getting a consultation. I've been researching a little bit and I've found the names of a couple doctors in particular who seem to be like the Dr. Grubbs of Japan, haha! Of course I wouldn't know where to start though since I don't pay into the national healthcare system there. At least if either of us go, it's a comfort to know we'll be taken seriously if we have to go to a hospital there.

Interesting conversation about language. I have a graduate degree in linguistics and I'm a linguist by profession. And I also studied Russian in college. Seems like many of us have that language in common to some extent! Neat! I also speak a bit of French, and a little Korean because I lived there for a while. I don't know anything about POTS/dysautonomia in those languages though.. anyway I would avoid the Korean hospital system as I was not very impressed with my experiences there ^^;;

[Ht888]

Altruism, from my research it looks like Russians attribute dysatonomia to this dysplasia of connective tissue. This article is/was in Russian and you can read it with Google translator if you are interested. It is mostly about the connective tissue problems, but they say elsewhere that patients with the undifferentiated type first present in adulthood to a neurologist with dysatonomia. http://www.mif-ua.com/archive/article/30446

YolaInBlue, I will let you know if I find a good doctor/dysatonomia treatments in St. Petersburg.

[Angela]

what part of russia and from when?????????????sorry i may be to excited so to speak.

[Ht888]

Angela, can you please clarify your questions? Not sure what you mean

[Angela]

Ashkenazi jews - familial dyso. i wonder if that skews the numbers. russia (ussr) is not as big as it used to be. for ex. i am lithuania/estonia/latvia purely from my mom's side by her dad and mother. I don't know about my dad but probably will from 23&me. other new countries broke off but used to be part of russia too....that is where my question was coming from. New Russia or old Russia. not sure it matters...again.

[Ht888]

I suspect all Russia since I'm technically not from Russia, along with some of my friends that have similar symptoms. There is a lot of cross population of Russians in those neighboring countries, some more, some less. I guess it has something to do with that geographic region and based on some research northern parts have higher incesence.

[Lemons2lemonade]

i would love to hear what different parts of the world are doing for treatment and research considering different cultural ideologies and perspectives. Anyone have this info? Rama i would love to hear what China is doing also, any knowledge on prevalence in Australia?

[Altruism]

Yeah, me too.

HT888, I'm VERY interested in how POTS due to unidentified connective tissue dysplasia is treated in Russia? PD, hyper or else? Thanks a lot!

[Ht888]

I will post here after my trip if there is any good info.