How we can hijack the media, in four easy lessons
Love it, hate it, good story, bad story... the media are going to keep reporting on ME/CFS no matter what. But isn’t it time that we saw that coverage as an opportunity?
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  1. adreno

    adreno Learned helplessness

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    Hydroxocobalamin could be directly helpful in some types of POTS, by regulating NO.
     
  2. ramakentesh

    ramakentesh Senior Member

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    SOme suggest it reduces the bioavailability of all NO, others that it specifically reduces iNOS expression. Not sure which is the case.
     
  3. bertiedog

    bertiedog Senior Member

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    Hi Rich

    You might be interested to know that I took 1/2 tab Fludro for OI for 3 years, I couldn't manage wiithout it for the first 2 years but then I started developing severe migraines and stopped it nearly 3 weeks ago. I am amazed by I have no more symptoms of OI now that I am off it as I did when I was taking it but don't really know why I have been able to come off it because when I stopped it 17 months I had severe symptoms of OI and had to restart it within 5 days.

    I continue with the supplements to help methylation and still on Prednisolone plus a bit of h/c so no change there. It would seem that my body has learned to regulate the sodium/potassium better but I realise that I might have to take the odd bit of fludro if the weather gets hot. I continue to take Lo Salt to help with potassium and have also got my Vitamin D level up to a good level so don't know if that helps at all with aldosterone?

    BW
    Pam
     
  4. ramakentesh

    ramakentesh Senior Member

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    interesting - perhaps your oi has just improved?
     
  5. taniaaust1

    taniaaust1

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    Twice weekly hydroxocobalamin injections did help me... but the ONLY symptom in my case they helped was with some of the memory issue (it was a big improvement thou on what it was).
     
  6. taniaaust1

    taniaaust1

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    thanks Rich. Im currently just sticking to trialing the things which are known to work for POTS right now. I have tried "some" of the methylation protocol in the past (only B12 injections helped, I also tried taking active B6 along with some other things but that didnt do anything).

    One day probably will try the whole thing as I know the whole thing often needs to be done. Im just desperate right now to get the POTS in some kind of control fast due to it being my current main disabling thing and it causes so many different symptoms.
     
  7. ixchelkali

    ixchelkali Senior Member

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    I don't have POTS; my OI is neurally mediated hypotension. I was on Florinef for a little over 2 years, and it didn't seem to do anything one way or the other. The only side effect I experienced was that I was hungry all the time. The doctor didn't mention potassium, just said to eat a high salt diet. He also couldn't say what "high salt" meant. I found the potassium info on the drug info insert. I made myself a "cocktail" of Morton's Nu Salt (mixture of salt & potassium) and magnesium (Epsom salts) dissolved in water. Yummy, if you like drinking seawater. ;) My OI didn't improve. Since I couldn't take NSAIDs for pain while I was on it, I finally went off it. My OI didn't get worse when I went off it, either. Since then, I've kind of adjusted to living a semi-horizontal life.
     
  8. taniaaust1

    taniaaust1

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    Im finding it shocking that your doctor kept you on it if it wasnt working at all (which I think that also shows seeing you didnt get any worst stopping it either). The Florinef/POTS treatment plan my doctor had me trialing would of stopped within 2-3 weeks had it not been helping me. If a certain dose of it is going to help, I notice it helping fast eg that same day you take it but one just needs to play around with salt dose there too.. not enough and it may not help even IF you are one who is going to respond to this drug.

    Check out the following treatment list http://www.medhelp.org/tags/health_page/24603/Dysautonomia/Dysautonomia-Treatments?hp_id=171 (my specialist liked this one so much he wanted a copy).
     
  9. jimells

    jimells Senior Member

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    Staying on drugs forever even if they don't help seems to be par for the course. I've met a lot of folks who were taking a boatload of pills and improved considerably when they quit taking most of them.

    Drinking Epsom salts sounds kinda harsh. I use a powdered magnesium citrate called 'Calm', and add a little lemon juice to the sea water. It actually tasted pretty good after a while!
     
  10. EtherSpin

    EtherSpin Senior Member

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    anybody know if florinef causes weight gain beyond just water weight ?
    Im baffled at the moment, over the past year my weight has not changed despite intermittent fasting , 1000-1400 calories a day (6ft male) very very clean diet, mostly home cooked high vegetable content stuff, protein shake every second day. recently added in metformin 1000mg twice daily as my CFS doc thought it *must* be a leptin issue with the calories being right to lose weight with my low levels of activity ( 1600 is recommendation by most fitness apps for a very "sedentary" male)

    Im on clonazepam,inderal,metformin,florinef and LDN - I have other stuff but its just multivitamin type stuff.

    most days I won't eat till about 2pm and try to have finished eating by 8pm

    thinking about dropping my 0.1mg (i think, one standard tablet) of florinef and using ice cold fluids and caffeine in the morning to vasoconstrict as a substitute for blood volume increase the florinef presumably does
     
  11. Justin30

    Justin30 Senior Member

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    Here is a question for someone with some experience. I Frequently get numb arms and legs when lying down.

    I drink like a fish and piss like a race horse. I have been using electrolyte mixes and a higher salt intake. No relief from POTS and the numbness in legs and arms.

    Has Florinef improved your circulation and prevented numbness in legs and arms?

    Has been helpful in regulating heartrate?
     
  12. Justin30

    Justin30 Senior Member

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    Oh and one last questions when have you found it best to be taken?
     
  13. ahimsa

    ahimsa Sick since 1990

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    Florinef (fludrocortisone) did cause weight gain for me. When I increased the dosage my weight went up even more. When I decreased the dosaged my weight went back down.

    It was not a huge amount - maybe 5 pounds when I first started on it, and then an extra 5-10 when I increased the dosage (which came right off when I decreased the dosage). This happened with no changes in diet or exercise. But I really did not mind the extra weight as long as the end result was that I felt better and could do more.

    But then the positive effects gradually seemed to fade over the years even with increases in the dosage. So I changed to a combination of midodrine and fludrocortisone. So far that seems to work a bit better.

    None of these different treatment methods have been anywhere near a cure for me. Just somewhat helpful in reducing my symptoms.
     

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