Our Newly Ill Face Their First Holiday Season with ME/CFS
Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling...
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  1. Dr. Yes

    Dr. Yes Shame on You

    Hi everyone,

    My doctor (a rheumy) just prescribed Florinef for neurally mediated orthostatic hypotension (and related problems -- not POTS, to my knowledge). It's fairly mild OH, with a 10-15 mm Hg drop on standing (not always immediately), but whether due to that or to other dysautonomias (TTT positive after nitroglycerin challenge, possible vasovagal syncope) I have a lot of problems with dizziness standing, often even sitting, and can't remain standing long or walk for any reasonable distance..(deconditioning no doubt contributes, as I am virtually bedridden).

    Anyway, I didn't have the sense to research it before agreeing to give it a try; now having looked into what others on this site and elsewhere (incl. Cheney) have said about it I'm not sure whether to still give it a try...

    Has anyone else (esp. those who haven't yet posted on it) tried it? And has anyone had success treating OH (esp. without POTS) with other natural protocols (sea salt, licorice root, etc) that may be more effective or have less side effects? Also, is a potassium supplement necessary with licorice root, etc. or is that just a Florinef thing...

    Note- An admittedly lousy cardiologist I saw discouraged the use of Florinef because of the risks of side effects for someone in my condition, and prescribed Theophylline instead (vasoconstrictor), but the latter had too many side effects of its own and I had to discontinue it. Midodrine was also considered too risky by both docs due to my weakened condition, to the fact that the OH is technically on the "mild side", and to the apparently high reactivity of my autonomic system these days (even small doses of Theophylline caused temporary hypertension, while not preventing drops on standing!)


  2. Sushi

    Sushi Moderation Resource Albuquerque

    Hi Dr. Yes,

    I can't remember if I commented on this or not! But, I did try it (I also have dysautonomia but not POTS) and, for me, it was awful--headaches, other side-effects, no help with OI.

    Others I know have had some help with florinef and OI, but also had monstrous and seemingly irreversible weight gain.

    My thoughts? If you try it, monitor yourself carefully for symptoms, BP changes etc. I did much better on other vasoconstrictors like (surprisingly) strattera which boosts norepinephrine's "face time" in the synapses. No longer need them now cause, once I got better, I started treating some causes for this whole mess. (methylation, toxicity, infections, etc.)

  3. susan

    susan Senior Member

    Gold Coast Australia

    Dreadful stuff Florinef,

    I was bedridden and it did nothing. What did work was Baschetti Licorice...... much more effective.... better, more acting stuff than the drug. Had so much trouble getting off Florinef.....it would not let me withdraw.......ended up in hospital as I could not stop coughing.

    Licorice is cheap and you can get it from Jace http://www.jacemedical.com/ and still only $20 in powder form . I mixed it in milk as Clymer Healing told me. Clymer were very good at treating this with adrenal support pills and the Baschetti licorice....they do email and Ph consulting..
  4. ramakentesh

    ramakentesh Senior Member

    Yeah licorice helped my POTS for years and although they may be different in primary mechanisms, ultimately it kept me standing for longer . Im tolerant to it now so it doesnt work as well. Downer...
  5. mezombie

    mezombie Senior Member

    East Coast city, USA
    Florinef helped me immensely for my NMH. It enabled me to sit and stand. Before Florinef, I wasn't able to be upright for more than about 15 minutes at a time, and even that would make me much sicker.

    I tried licorice root, salt, and other alternatives. Cheney finally prescribed beta blockers.

    It wasn't until 2000, ten years after I first got ill, that I found a doctor who was willing to prescribe Florinef.

    I am forever grateful to him!
  6. sensing progress

    sensing progress Senior Member

    Tucson, AZ
    I just started Florinef earlier this week. Did 0.05 mg a day for the first two days, saw no change and no side effects, so went up to 0.1 mg the past two days. Today I'm noticing some dizziness and a bit of depression (which I read can be side effects). Hoping they will go away soon. Anyone else experience these side effects?
  7. Sushi

    Sushi Moderation Resource Albuquerque

    I took it for 6 weeks with no help for OI. I did get headaches and dizziness--didn't notice depression but the headaches were too much. The doc told me to stop taking it--I agreed!

  8. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs
    I tried to pm but I dont think it went through

    Dr Carruthers warned me of some drugs that could help but could cause a heart attack, so be very careful.

    I have been offered a few drugs but have turned them down until I see a specific cardiologist next year.

    When my rehab physician expressed concern about the dextroamphetamine that I am taking, I cut it back and find that it still helps.
    I take about 15 mg of sr dexedrine - even a smaller amount helps. I take it an hour before I am up and about.

    When I was taking more Maxalt (vaso restr), I found that it also helped the dysautonomia, but I have not needed to take it much since starting minocycline

    I also wear travel socks - if you have someone to help get the full length stockings on they might help

  9. ahimsa

    ahimsa Rarely on PR now

    I noticed that this thread was started Dec. 2009 -- Dr. Yes, not sure whether you are still following this thread but I thought I'd reply since it has been revived by a few others.

    I was diagnosed with NMH (Neurally Mediated Hypotension, aka, Neurocardiogenic Syncope, Vasodepressor Syncope, etc.) back in 1995. I passed out on the tilt table test after about 20 minutes. No isoproteronol challenge was needed, just standing still that long caused my blood pressure to plummet to something unmeasurable (literally). I got the same results on a tilt table test done in 2003 (for long term disability insurance) except that it took a bit longer, 30 minutes. In both cases I got an abnormal test result without any IV drug needed to invoke a response.

    Back in 1995 I started Florinef (fludrocortisone) along with extra salt (salt tablets) and water. A bit later I added a prescription for time released potassium (seemed to work better than over the counter potassium) because the doctor was concerned about electrolytes (side effect of fludrocortisone is to hang on to sodium at the expense of potassium, if I recall correctly). I also get my electrolytes measured about once a year.

    This worked fairly well for a while then it felt like the Florinef was starting to wear off after some years (like my body was adapting to it). The only noticeable side effect from fludrocortisone for me was weight gain. But I have read of some people getting migraines (if anything, I got FEWER migraines) and depression (did not happen for me at all). So, for me, fludrocortisone was helpful and did not have any serious side effects.

    In 2003, I added midodrine and reduced my fludrocortisone dosage (cut it in half, lost some of the weight). The cardiologist said that some people do well on a combination of drugs rather than trying to rely on just one drug to treat orthostatic intolerance (OI). So that is why I'm taking both. And I've also read of some ME/CFS patients who also have OI getting good results from beta blockers but I think you have to calibrate the dosage carefully -- taking too much can backfire and cause a lot of fatigue from what I understand.

    I have routinely low blood pressure - never had any trouble with high blood pressure even while lying down. I can go in for a doctor's appt. in the morning, after taking midodrine, florinef, and salt tablets, and 1-2 cups of coffee, and my BP will be 100/65. (the nurse always tells me how GOOD that is and I'm thinking, but if only it were a little bit higher....) So, for me, midodrine is a really helpful drug with the only side effect being the feeling of my hair standing on end/goose bumps. But I completely understand that if someone has fluctuating blood pressure readings, not routinely low readings, then there might be more of a risk of the blood pressure going too high.
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