Hi, I'm New And Really Need Some Advice...florinef?

[Pluto]

Hi Everyone,

I'm so happy to have found this forum. I could really use some advice. The bottom line 3 questions I have is

1. Is florinef worth trying when my bp drops too low at first, but rises too high after standing 5 minutes?

2. Could my nerve symptoms be caused by my orthostatic intolerance?

3. My bp drops too far when I stand, but apparently then rises too high (from 125 sitting, to 100 standing 1 minute, to 175 standing after 5 minutes....with symptoms galore - PULSE rises to 140+) - my doc called it hypotension, but said he was "confused." That left me wondering if I should even take a bp-raising med.

My short story is this....I've had POTS symptoms for most of my adult life.. I NEVER could stand while taking a shower etc.....but in 1998 I got a virus of some kind that caused me to be almost completely bedridden for a couple of years...it felt like my brain had been infected and I had no stamina. After that I slowly regained some ability to be up but it left me disabled unable to work, I crash upon exertion....the amount differs from day to day, even moment to moment. For 10 years, I've lived with this plateau - I pace myself, rest, sometimes go too far, then crash, but recovery time after crash has improved over the years. Dx CFIDS.

Until 3 weeks ago. I had a relapse. It was shortly after I got the flu shot. Don't know if that caused it, but I woke up and felt like my brain was swollen again and could barely walk. I had tingling all down my legs, feels like all of my nerves are exposed worse than ever. Very weak. Feel like I will jump out of my skin when I hear a noise. I went to urgent care, they did the lying, sitting, standing bp on me, which I now realize should have been done years ago...and the doc said my pulse and bp RISE too much when I'm standing after 5 minutes. Sent me to an endocrinologist. Endo did my bp after standing 1 minute, and he said my bp DROPS when I stand, pulse races. (I guess it drops, then rises too high as a compensation???) So he gave me florinef. Dx Orthostatic intolerance.

Could the nerve symptoms be helped by florinef? Could florinef make anything WORSE, because I can't tolerate worse. I'm extremely sensitive to all meds and am scared to try anything new.....BUT would LOVE to find something that might HELP. So far, I've found nothing to help.

THANKS for any advice or experiences with this you can share with me about this. I have done some reading about it, but still unsure.

[lorrie]

Sorry I can't offer any advice about Florinef...just wanted to welcome you and hope you find something that helps. You will find lots of support here and you can know that people here understand and care about what is going on with you.

[Heiferly]

Florinef is (and please, by all means, someone jump in here and correct me if I've got this wrong!!) supposed to cause us to retain more fluid. If there is more fluid in the circulatory system (more blood volume), there should be less of a drop in blood pressure upon standing from blood pooling. Theoretically . . . some people just don't see results from it. Some people have side effects they deem intolerable. Some people love it. Your mileage may vary. :-p Some docs seem to swear by the stuff though whenever they see orthostatic intolerance!

It is by no means an across-the-board treatment for dysautonomia, so unless I'm way off base here and someone needs to jump in and set me straight, I don't think it'll do anything for nerve problems. In general, nearly all of the meds they give us are targeted to a specific pathway and thus address one set of symptoms or another but I have yet to hear of anything that acts as a miracle cure to fix all autonomic woes in one fell swoop. Rather you have subclasses like drugs for serotonin, norepinephrine, vasoconstriction, blood volume, pain, nausea, insomnia, IBS, etc . . .

[mkoven]

I find it helpful, along with midodrine. I have pots and orthostatic hypotension, but occasionally my bp is high. Florinef pulled me out of a serious flare. My resting bp is now only about 10pts higher. I take .075 a day. My fingers get a little puffy, but otherwise no major side effects.

[flop]

Hi, welcome to the forum - glad you found us!

From what you've described it does sound like POTS could explain what you are experiencing. Florinef is a medication that helps to boost blood volume and theoretically reduces the effect of blood pooling when we stand up, this in turn can reduce the tachycardia and may stop the "over-shoot" of your BP going so high. You'll notice a lot of 'if' and 'maybe' in that statement as POTS is a syndrome (collection of symptoms) and no two people with POTS have the same reactions to things. A lot of the treatment is based on "give it a go and see what happens".

Before starting treatment there are two things that I recommend:

1) buy or borrow an automatic BP monitor. The sort with a cuff that goes around your upper arm are the most reliable. Take and record your BP several times a day for a week or so. Do "orthostatic" measurements when you can (lie down for 5 mins then do BP, sit up for 5 mins and do BP then stand up and do BP right away then every minute or so for a few minutes). Doing this gives you a feel for what your own baseline BP and HR (heart rate) are.

2) When trying any medication start with a small dose and see what effect it has on you. People starting florinef are often prescribed 50 micrograms (0.05 mg) which is half of a 100 mcg tablet (0.1mg). Florinef takes several weeks to have its full effect and you need to drink a lot of water 2-3 litres per day and take a high sodium diet to let it work properly. When changing medications repeat the BP monitoring so that you can measure any change in BP and HR. There is no need to do daily BPs for weeks on end, rather I tend to measure regularly for a few days then stop measuring for a week or so, then check for a few days again.

None of us can predict exactly what effect florinef will have on your symptoms but by using the above methods you should avoid any sudden / drastic change in BP and also get some useful data to help your doctors treat your condition.

Good luck,

Flop

[Pluto]

Ok, thanks. I appreciate your input and it gives me a starting point. I'm so new to this diagnosis but finally some of my symptoms make sense! Thankyou!

[Heiferly]

Ugh, mental lapse . . .

I forgot to say:

WELCOME!!!!! I hope you find lots of help and information here. It's a very supportive place!

[firewatcher]

Hi Pluto! (great name: the dog or the god?)

Your stats sound like mine. I just got back from Vanderbilt's Autonomic Dysfunction Center where I was diagnosed with Hyperadrenergic POTS. When you stand, your body senses the sudden volume shift away from your head/heart and sends you into a vasoconstrictive/adrenaline overdrive which shoots up your BP.

My stats from Vandy:

Supine-- HR 78 BP--126/75

1min. upright HR 123 BP--148/98

3min. upright HR 126 BP--131/92

5min upright HR 115 BP--159/76

10min upright HR 112 BP--137/85

I usually have narrow pulse pressure when standing (difference between systolic and diastolic) which usually indicates low total blood volume (common in POTS.) I've had crazy BP readings like 87/80, 125/115 and173/149. Having enough blood in your body definitely helps with the whole POTS thing. I am on dDAVP (causes the body to retain water) and it helps a lot. Propranolol or other Beta Blockers help me with the tachycardia and tremors that occur with standing. I completely agree with the home BP monitor, I kept 12 pages of BP logs to show my docs the wild swings and what is "normal" for me.

Welcome!

[Shimoda]

Florinef, at least for me, pointless. It really does little more, at least for me, than drinking a bottle of gatorade. It really seems to just be a glorified salt pill. It helps, but its no cure and only does a little to alleviate anything other than blood fluid retention. Just my opinion.

[momofsara]

Sara has been put on Florinef more than once. However the side effects are intolerable for her. The mididrine has bad side effects for her also. Hope you find something that works for you....

Best to you....... Susan

[Pluto]

Hi again everyone.

Thanks SO MUCh for your comments.

Firewatcher: I'm Pluto - the planet...er whatever! I'm way out there and having an identity crisis!

I did start drinking gatorade and noticed an improvement. I just wish I could figure out why my leg is tingling....this is a new symptom for me, and why I feel like I'm going to jump out of my skin. I'm not normally a very nervous person, I guess that is the adrenaline?

Momofsara: What are the intolerable side effects that Sara experiences on florinef?

Thanks again all, and nice to meet you.

[firewatcher]

Hi again everyone.

Thanks SO MUCh for your comments.

Firewatcher: I'm Pluto - the planet...er whatever! I'm way out there and having an identity crisis!

I did start drinking gatorade and noticed an improvement. I just wish I could figure out why my leg is tingling....this is a new symptom for me, and why I feel like I'm going to jump out of my skin. I'm not normally a very nervous person, I guess that is the adrenaline?

Momofsara: What are the intolerable side effects that Sara experiences on florinef?

Thanks again all, and nice to meet you.

The tingling can be explained by an electrolyte imbalance caused by the water or sodium retention, or the sudden swing between high and low sodium or potassium (each will regulate the other.) I get tingling and swelling if I walk too long. Look at this article, you may want your doc to monitor your electrolytes while on it!

http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/hyperkalemia.jsp