happy63 Posted January 2, 2006 Report Share Posted January 2, 2006 Hi everybody! Im new here.I have been diagnosed with POTS since June 2001.I think that the symptoms have always been the same since 1989. I have been suffering from tachycardia, dizziness,terrible headaches and I fainted from time to time...But fortunately my cardiologist prescribed for me a Betabloker and Xanax and some vitamines which helped me improve a great deal. I have taken those medecines for about 10 year. Taking my medecines and following my doctor's instructions I was more or less OK.It was only in the year 2001 when I felt that my healt has made a change in my life, my dizziness has been uncontolable and my BP has been very low . I did my Tilt Table Test and the diagnosis has been POTS. I have been prescribed Fludrocortisone, Gardenal, Magnesuium, Betabloker and I have been told to drink lot of watter and to wear compression sockings during the day.I had been under those drugs for about three years but there was no positive change concerning my symptoms,exept that my BP raised to 160/90.Oh I feel sick to remember that periode of my life. I had spent plenty of time looking for people who would travel abroad and buy Fludrocortisone for me for the simple reason that it is not available in my home coutry.I stopped taking those medecines once again for about 18 months .And it is only in November 2004 that did my Tilt Table Test and have been re-diagnsed with POTS. Nows I am under Gardenal,Magnesium,Venamitol and I wear compression sockings.Fludrocortisone is prescribed fo me but who will import it for me? May God healp me and grant me health.I whish that you will all of you enjoy reading my story even if it is some what redendant. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 2, 2006 Report Share Posted January 2, 2006 I replied to your post on NDRF too, but I thought I'd add something else here. If you cannot obtain florinef, you might see if you can get an herb called liccorice root, or even black liccorice candy. Liccorice contains an ingredient which can elevate blood pressure; certainly you should ask your doctor before taking anything new, but if you absolutely can't get florinef, which was prescribed, you might ask if there are other options. Also, you might want to look at the main section of the DINET site that reviews treatment options, prescription and nonprescription.http://www.dinet.org/what_helps.htmNina Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 3, 2006 Report Share Posted January 3, 2006 Hi,Could you get the drug from internet and postal mail?Which country do you live in? Quote Link to comment Share on other sites More sharing options...
Poohbear Posted January 3, 2006 Report Share Posted January 3, 2006 adding salt would be a much better solution than florinef. Florinef is really harsh on your body. If you aren't already doing this, talk to your Dr about increasing sodium intake. The experts who deal with these disorders recommend 8,000-10,000 mg a day of sodium. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 3, 2006 Report Share Posted January 3, 2006 Ernie, I think Amouna is in Morocco, which has very strict drug regulations. However, I don't think florinef is among the tightly regulated drugs like pain killers. If xanax can be had, as is listed in the post, then I would think importing florinef might be possible. Perhaps a doctor might be able to do so?Nina Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 3, 2006 Report Share Posted January 3, 2006 Amouna,Welcome to the board...I am so grateful that you have found our little spot on the internet...we are becoming a truly WORLD WIDE community. It is quite beautiful. I am sorry that you are struggling so...I do not have any good answers, but wanted to welcome you.Emily Quote Link to comment Share on other sites More sharing options...
happy63 Posted January 3, 2006 Author Report Share Posted January 3, 2006 Amouna,Welcome to the board...I am so grateful that you have found our little spot on the internet...we are becoming a truly WORLD WIDE community. It is quite beautiful. I am sorry that you are struggling so...I do not have any good answers, but wanted to welcome you.EmilyThanks ever so mutch Emily. I am very happy to to meet all meet all the members of this forum.By the way, I am very optimistique despite everything.Amouna Quote Link to comment Share on other sites More sharing options...
happy63 Posted January 3, 2006 Author Report Share Posted January 3, 2006 I replied to your post on NDRF too, but I thought I'd add something else here. If you cannot obtain florinef, you might see if you can get an herb called liccorice root, or even black liccorice candy. Liccorice contains an ingredient which can elevate blood pressure; certainly you should ask your doctor before taking anything new, but if you absolutely can't get florinef, which was prescribed, you might ask if there are other options. Also, you might want to look at the main section of the DINET site that reviews treatment options, prescription and nonprescription.http://www.dinet.org/what_helps.htmNinaThank you very much Nina, you are doing your best to help and I am very grateful to you. As for Florinef I have given up trying to get it, but I will try to look for it once again in . Curently I am rainsing salt and taking the others medecines .Amouna Quote Link to comment Share on other sites More sharing options...
gwen Posted January 4, 2006 Report Share Posted January 4, 2006 welcome! I'm sorry to hear you are having problems getting prescriptions. Are you able to get proamitine (midodrine)? I use that as well as salt with some success. Perhaps that would be easier to get prescribed. I did not have good results from the other so thats why I was changed. Hope you can find a dr. that will get the right drug to you.:-) Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted January 4, 2006 Report Share Posted January 4, 2006 Hi Amouna,I cannot give advice about getting florinef, but I welcome you here and hope that you are able to get some improvement in your health. Glad you found this place!Kristen Quote Link to comment Share on other sites More sharing options...
d4g7 Posted January 4, 2006 Report Share Posted January 4, 2006 I might sound ignorant MightyMouse, but what is NDRF??? Quote Link to comment Share on other sites More sharing options...
corina Posted January 4, 2006 Report Share Posted January 4, 2006 hi amouna,i don't have very much to add but i just wanted to say hi to you and welcome you around. you have found yourself a great place to be!corinaoh and d4q7, ndrf is another site about dysautonomia where they have a forum too,corina Quote Link to comment Share on other sites More sharing options...
d4g7 Posted January 4, 2006 Report Share Posted January 4, 2006 Hi corina,Is NDRF associated *** DINET at all?For me, Dinet is a fantastic resource, if this NDRF is part of Dinet, I might be interested. How do I get to it if it isn't.If it's like one of these alt.binaries - I'm not interested, too many flamers.- Sorry to be off topic of of 'POTS an overwhelming endurance', just I have never heard of NDRF, and wonder who and how it is affilated with DINET since one of the moderators is posting there - and I don't know how to get there... Quote Link to comment Share on other sites More sharing options...
corina Posted January 4, 2006 Report Share Posted January 4, 2006 ndrf isn't connected to dinet at all, they just have the dysautonomia in common. i don't know anything about alt.binaries as i'm not from the us but if you want to know more about it you can pm nina (mightymouse) she can help you.good luck,corina Quote Link to comment Share on other sites More sharing options...
d4g7 Posted January 4, 2006 Report Share Posted January 4, 2006 Thanks Corina,I understand. I only wanted to know just in case there was another 'arm' to dinet and I might be missing out on some vital info.I seem to find all the answers I need here.I too am not in the US... Australia, by way of New Zealand, UK, Tokyo and Hong Kong. Quote Link to comment Share on other sites More sharing options...
sally Posted January 4, 2006 Report Share Posted January 4, 2006 Hr d4g7,here's the link. they are also a very informative site and have a discussion board.http://ndrf.org/hope this is helpful.good luck Quote Link to comment Share on other sites More sharing options...
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