posted
Okay i know of 3 people so far using this for blood pressure or NHM- has anyone else used this to raise their blood pressure or that has NHM or POTS?
How did you come off this med? The first person i know came off of it due to side effects, and another is still on it.
Posts: 116 | From Texas | Registered: Dec 2009
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I am on Florinef and it's been great for me. No problems. I have such low blood pressure, I had to be put on something. My blood pressure is still low even though I am on Florinef, but it has helped. I have had no side effects while using it and don't plan on getting off this med for quite a while.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
It's helped me enormously! Without it, I would start to pass out every time I sat or stood up! I had to have my dose doubled to get enough of an effect. Then, I had to lower it to 1 1/2 pills, due to getting migraines from 2 pills.
I was simultaneously put on a beta blocker, atenolol, to help to raise my BP from the NMH. Counter-intuitive, but it works! Wild Condor explains about it on her website, under "Backwards Blood Pressure."
Don't try to come off it until the problem is resolved. I've sometimes needed to increase the dose slightly, as I started to pass out even with the current meds.
A lot of sea salt helps, too.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Thanks! I hope i won't have any side effects either- so far it seems to help
disturbedme did you ever do a beta blocker? rumigirl did your cardio doc put you on this or did your LLMD? did you have the tilt table test??
I've heard its a pretty rough test and i kinda want to avoid it- how long have you both had this low blood pressure?
So far i don't have thyroid problems- my doc is checking again- but as of now i cant say thats a reason for the low blood pressure
I used to have normal blood pressure before i got sick- though it lingered toward the low side and then when i got sick it dropped to 110/60 and stayed around there- now it stays around 100/59 and has dropped as low as 90/56
I think my dose may need to be increased too- but i guess i will have to give it a little more time to see. i'm on .1 mg right now.
I'm just glad i haven't passed out yet- i will probably stay laying down a good long while after all my bloodwork is drawn.
Posts: 116 | From Texas | Registered: Dec 2009
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Yes - I have been on a beta blocker for around three years. I had to be put on it for chronic and constant tachycardia (fast pulse).
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
gee i wonder if the florinef will work without a beta blocker?
i'm still very dizzy today... i really need to find out what's going on with me.
my ekg didn't show much and neither did an echo 4 mths ago but that seems like years ago-- don't know what would have changed since then
haven't had a stress test done or a tilt table test and both seem scary but i wonder if the florinef alone will be enough... i'm so tired of not knowing anything and thinking it will take all the blood that's left in me to run these tests for the llmd.
Posts: 116 | From Texas | Registered: Dec 2009
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posted
THANK YOU mjbucuk! gee i was thinking i was the only one not on a beta blocker-
do you have the NHM? or is yours from thyroid problems? what dose worked well for you? I notice that you are VERY close to me- i'm in Houston, tx.
Have you found an LLMD in Austin? What made you come to stinky fat old texas? sorry- i've lived here all my life and so its not all that wonderful to me anymore. Posts: 116 | From Texas | Registered: Dec 2009
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posted
man this is the BUSIEST forum i have been on- there's hardly a wait for answers! nice!
Posts: 116 | From Texas | Registered: Dec 2009
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posted
learning721, I am actually traveling to Houston this coming week to see a new Dr for CFIDS. I have had some type of orthostatic hypotension for abt 15 yrs, and have been on .1 mg of florinef.
(My kids are the ones who have Lyme, etc and they see Dr Jones.)
Posts: 758 | From now TX | Registered: Mar 2001
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posted
For those of you with low blood pressure, do you have other signs of adrenal insufficiency? Do you have weight loss, nausea, loss of appetite, darkening of the skin, salt cravings?
If you have this but think it's only related to Lyme, please check with an endocrinologist. I had Lyme but I also developed Addison's disease, and that comes along with very low blood pressure.
Posts: 39 | From Massachusetts | Registered: Jul 2006
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posted
mjb- sorry i'm not familiar with cfids- is that chronic fatigue? forgive me if i'm wrong
anyway if it is that usually goes along with lyme.. i'm so sorry your kiddos have lyme
mine do too.. would you pm me with your docs info please? i'm looking for a new doc for them b/c the one we see in Rowlett is too ill to take new patients- i only have my son in with her.
I surely would appreciate it!
Posts: 116 | From Texas | Registered: Dec 2009
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