| ahimsa 2006-09-27, 9:22 pm |
| Elise (Lisi) wrote:
> I am considering taking either the medication Florinef or Midodrine
> for my orthostatic hypotension (Neurally mediated hypotension/or,
> lowered blood pressure upon standing). Does anyone have any
> experience with these meds? Have they helped and/or been any
> cause for concern?
I can't comment on your problems with low body temp and thyroid
(I don't have those problems) but I wanted to respond to the first
part of your mail.
I'm currently taking both fludrocortisone (Florinef) and midodrine
(ProAmatine) for my orthostatic intolerance. I'm taking 1/2 tablet
of fludrocortisone (0.05 mg) in the morning and 1 tablet (5 mg) of
midodrine 4 times a day (every 3-4 hours). It's working okay for me
but everyone is different.
Doctors say you should monitor your BP to make sure it does not go
too high. I did that in the beginning, and each time I increased my
dosage, but my systolic BP has never been above 120 (and more often
90-110) even after taking florinef, midodrine, extra salt, and a cup
of strong coffee. I guess I'm lucky. :-)
The main side effect I had from Florinef was weight gain (minor, lost
most of it when I cut back to 1/2 dose). The only side effect I've
had from midodrine is the feeling of my hair standing on end. That
still happens but has diminished over time (I started on midodrine
in 2003).
The only other problem I had was that when I first started I was
not taking the midodrine doses close enough together. Then when it
wore off I had bad symptoms (nausea, dizziness, etc.) just like an
NMH "crash" only worse. Now that I take them closer together, and
I take enough to cover activity throughout the day, those problems
have gone away. Midodrine is not a cure. I still sometimes do too
much activity (e.g., stand too long, sit at the computer too long)
and then I have an NMH crash. But these crashes are fewer than they
were before the midodrine.
Some unexpected benefits were that my sleep got better and I lost
weight after I started the midodrine. I think with a bit more energy
I don't crave sugar in the afternoon. And although the drug has worn
off completely by the time I go to sleep (so it *can't* directly help
with sleep) there is a way it could help indirectly. If I have fewer
NMH "crashes" (where the BP drops suddenly and symptoms come on) then
my sleep is better at night from having not had that physical stress
of having to adjust my heart rate and blood pressure all day. Then,
the sleeping better could be helping me to lose weight (there are
studies that show a correlation between sleep problems and extra
weight). My doctor and I have talked about it but these are just
theories--we don't really *know* why it happened.
Additionally, this happened during my fight for disability benefits,
a very high stress time! It was completely unexpected that I would
sleep better and lose weight during that time. So, for me, there is
no question that midodrine is what caused these improvements even
if I can't figure out how.
I thought I'd mention that "orthostatic hypotension" is just one kind
of orthostatic problem and is not the same as NMH (neurally mediated
hypotension). I'm just a patient, not a doctor, but I think the most
common kind of orthostatic hypotension is when you stand up quickly
and see stars or black out. It usually does not cause disability but
may cause falls in the elderly.
Other types of orthostatic problems, such as NMH and POTS (Postural
Orthostatic Tachycardia Syndrome), are also related to blood pressure
and heart rate regulation but they are quite different.
Here's an extract from the CFIDS Association of America web site:
(http://www.cfids.org/about-cfids/or...intolerance.asp)
OI [Orthostatic Intolerance] is an umbrella term for several
disorders that may be due in part to abnormalities in the
autonomic nervous system. The connection between OI and CFS
was first explored in 1995, when researchers at Johns Hopkins
University identified at least one form of OI in 96% of CFS
patients tested. ...
There are many types of OI, but two forms have been linked with
CFIDS in research studies: NMH and POTS.
* NMH is a precipitous drop (at least 20-25 mm Hg) in systolic
blood pressure when standing. The blood pressure drop is
accompanied or preceded by an increase in symptoms.
* POTS is a rapid increase in heart rate (pulse) of more than
30 beats per minute (bpm) from baseline, or to more than 120 bpm
total, during the first 10 minutes of standing. It is also
known as chronic orthostatic intolerance, or COI.
[end of extract]
A few other web sites:
http://www.ndrf.org/
http://www.ourfm-cfidsworld.org/html/nmh.html
http://potsplace.com/
Hugs,
Marjorie
ahimsa@easystreet.com
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