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.
Posted by disturbedme (Member # 12346) on :
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.
Posted by Rumigirl (Member # 15091) on :
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.
Posted by learning721 (Member # 23798) on :
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.
Posted by disturbedme (Member # 12346) on :
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).
Posted by learning721 (Member # 23798) on :
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.
Posted by mjbucuk (Member # 843) on :
I have been on florinef for many years. I do not take a beta blocker with it.
Posted by learning721 (Member # 23798) on :
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. Posted by learning721 (Member # 23798) on :
man this is the BUSIEST forum i have been on- there's hardly a wait for answers! nice!
Posted by mjbucuk (Member # 843) on :
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.)
Posted by ssmillik (Member # 9635) on :
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.
Posted by learning721 (Member # 23798) on :
well i'm getting my adrenals checked again- apparently the blood test i did was not accurate as it was in the pm
my llmd is ordering a saliva cortisol test.
Posted by learning721 (Member # 23798) on :
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.
![[Smile]](smile.gif)