Hello. I am dont frequent this board very often but I have found more about POTS on this board then I have the heart board. I just spent two weeks in the hospital with heart problems and came out with a new diagnosis. I have atrial tachycardia as well as autonomic dysfunction. I was told to wear compression stockings and they started me on florinef. i have only been on it for a few days but I have developed a horrible headache on it. I was told this a common side effect of it. My blood pressure hasnt increased at all yet. Anyone had experience with florinef or have any ideas for treating the headache?? Would appreciate any support. Thank you

Have you been tested for Hashimoto's and thyroid issues? My cardio was certain I had POTS.. and then it turned out to be secondary hypothyroid, adrenal insufficiency, and Hashimoto's thyroiditis. My blasted antibodies are 1695 or more now and have decided that attaking the thyroid alone was boring so let us hit everything else as well.

If you haven't been tested for the thyroid AI's do it. I was put on pindolol.. which is a short acting beta-blocker. I only needed it during the day when I was moving about.. when I slept it needed to be out of my system. Any of the others made my headaches and migraines worse. I finally got treatment for my thyroid in January and treatment and identification of the adrenal issues yesterday. Once my thyroid meds started.. my POTS symptoms went away. If that wasn't an I told you so to my Endo, I do not know what is.

I am not sure if this helps, but you have to be thorough when they toss out the autonomic card.

Florinef? I will look into the FDA database for side effects..
Fludrocortisone or florinef is a corticosteroid. It belongs to the family of medicines called steroids. Your body naturally produces similar corticosteroids, which are necessary to maintain the balance of certain minerals and water for good health. I could see your MD prescribing this if you have low cortisol.. but for tachycardia by autonomic trigger. Did your MD to a blood and 24 saliva cortisol test on you? If not he may be driving you hypothyroid with the steriod.

Headache is a rare side effect of system interaction. If these headaches continue, you need blood testing to make sure your cortisol hasn't been driven too high. Cushing's syndrome and adrenal fatigue are linked to high cortisol.

I hope this helps.
MG

First of all, sorry to hear about all your problems.
Second, did you taper UP on the florinef? It is not a fun medication to take - for a tiny little pill, it packs a wallop. I suggust you cut the pills into quarters and start with a quarter for a week, then when you finish up a few pills, then move to halves, then move up to a whole pill.
I took the pill for Cushing's and now take it for Addison's - and I had to taper into it. It can cause headaches but if you taper into it, you will have less side effects and more benefits. My endo also suggests salt tablets with it but not sure that will be the same in your case. I take 1 gram sodium chloride tablets to keep my blood pressure up and sometimes just use those when my BP gets wonky.
It takes a while to get used to... also, it may take more than one pill - but back off, taper up, and then see how you do!
Good luck!

UGHHHHH taper up, YEAH RIGHT!!. I got started on it in the hospital at 0.1, was on it for a day and a half and they increased it to 0.2. They are just smacking it to me. My standing blood pressure in the hospital was 76/44. The physician took it himself twice. Of course at the same time he grabbed me expecting me to pass out. I was shocked. I have horrible horrible heart arrhythmias and have had every system in my body check thoroughly except for the endocrine system. I have had numerous thyroid tests that always are normal. I think that I am going to request to go to a endocrine doctor and have them do some testing as well. Thanks for the advice. Of note today my blood pressure is a bit on the high side:confused: so I will give it till monday and call that fine heart doctor of mine. Thanks again.

Oh my...Yikes!
If you are taking 2, take them one at night and one in the morning to even things out instead of taking them together as well. I have taken up to 3. I got the "florinef fluffies" and gained 10 pounds too which ticked me off to no end.
If they are checking your renin and aldosterone - make sure they do the testing accurately. Some labs require you to stand at least 30 minutes before the draw, and the tube must be lavender, on ice, spun immediately and frozen promptly or the results are invalid. They mess up my renin all the time so I even bring my ice to be lab and feel like an idiot standing in the waiting room but I want my results to be the best they can be.
What thyroid tests did they do? If it was just TSH, T4 and T3, not enough - you need free T3 and free T4 plus antibodies for hashimotos and graves. Docs just run the panal and the panel, well, bites.
Ask about the salt.

well uhmm i cant split because I am taking 0.2 twice a day. So I take two tablets in am and two in pm. As for the other testing, i know that they tested the renin aldosterone when they did the kidney work up. I had enormously high blood pressure at one point in this mess and they did all that stuff. Once i get to the doctor I will ask for a endo doctor and i am sure they will test away.

Go in with a predefined list of thyroid tests. Ask the Endo what tests they are going to run and request that they include the following with it.

TSH 3rd Gen minimum
Free T4
Free T3
T3 Uptake
TPOAb
TGAb

It wouldn't hurt to get them to look at the adrenal function and pituitary function while they are at it. The WHOLE endocrine system is tricky and dependent on each other. When one thing goes bad.. well shall we say TIMBER or domino effect. It would help if your cardio would test the thyroid so you can walk into the Endo with results in hand and get the ball rolling if there is an issue. Most Endos are swamped and getting in to them can take a LONG time.

As to your POTS, did the MD diagnosis it by symptoms or did he do that horrid tilt table test while drawing a smorgous board of blood. Up til the t8ilt table test my Cardio was willing to bet it was POTS afterward he had to dismiss it and said only other source is thyroid/autonomic in nature. I went back to the Endo and she dismissed it out of hand.. insisting the heart, vision, headaches, and many other issues were not thyroid dependent. You have to double check your MDs.. they do and can make mistakes. You have to work with them to make sure mistakes are minimal.

MG

Well I am going to have to do some research because I am quite sure that I have had some of thyroid tests done including the t3 t4 stuff. But I will check. As for the POTS I have sort of odd symptoms. I had a tilt that was negative because at the time i was having high blood pressure when I got tachycardic when standing. However recently I have had documented many times of lowering of blood pressure and higher heart rate with position change. I have complex heart issues. They have done multiple EP studys and what now makes my doctor want to treat me for autonomic dysfunction was that he couldnt find the area that was producing such bad tachycardia. So he is now going to treat me for both atrial tachycardia as well as autonomic dysfunction because he thinks I have both. I have terrible tachycardia. I am a bit nervous with them messing around trying to get this "higher filling pressure" to my heart because I have a history of high blood pressure and it took a year and a half to get it to come down. I called them this morning because my blood pressure was 148/100 last night and has been that high all weekend. How long does it take for your body to adjust to this florinef? Thanks for the help.

Well, you are taking a super high dose at this point. And your BP is high. They should be checking your sodium and potassium to make sure you are ok. With your BP that high, you should probably scale back a bit.
If you taper up, it takes a the time you are tapering to adjust - otherwise, well, you are pretty much into the med. The reason for tapering is to minimize the side effects.

well it was sure nice of them to taper me, NOTTTTTTT. I called the doctor yesterday morning because my blood pressure was so high, instead of lowering the dose the nurse just wanted me to increase my heart med that lowers my blood pressure. I know that if she would have checked with the doctor he would have told her differently, but I didnt make a stink about it. But then last night I ended up calling the on call doctor because i was having such bad headache, high blood pressure and started having chest pain. Finally he told me to decrease the florinef to 0.1 twice a day. Still had the headache today but the blood pressure is a little better. We'll see I guess on thursday when I actually see them. Sure would be nice to lose the headache though. Thanks for the advice.

Oh man... Well hopefully with the lowered dose, your headache will recede. I would try some high potassium foods like V8 or a baked potato (eat the skin) and see if that helps. Good luck with the appointment! Let us know how it goes.

So does florinef make you lose potassium??? That is definetly not a problem I can have. When I get a potassium much less than 4 I have increased heart problems. SIGHHHHHHHH

How much florinef do you take? I started out taking 0.1mg florinef once daily know I take .25 tablet daily. Does your Dr. specialize in Addison's disease?

If your potassium is high, that is a sign of an adrenal crisis. K goes high, Na goes low... some addies go low on both (I happen to be one of them) so it is not a hard and fast rule but that is the norm. So you probably need to avoid potassium and push the sodium harder - but the florinef will help you hold on to both as it helps you hold minerals in general. K being low or high makes the heart go wild. Sorry - ingore the potassium advice... but any salt tablets you get have to be non-buffered as they buffer them with potassium.

Lucky to only take .25, Unhitched... do you take salt tablets?

Ok so went to the doctor today and yes they dropped my florinef again, this time to just 0.1 once a day. They would like to add salt to me but because I have really bad stomach problems I cant take the salt tablets. Im ok with the potassium because high is good for me. However he didnt want to do any testing of the adrenals yet unless I dont get any better. I'll give him that. So we'll see. Unhitched.. you got to read back in my post, I am not taking Florinef for adrenal problems (ie addisons).

Take the salt tablets with food! I take them all the time, food or no food and they do not bother me at all as long as there is some water. Not sure why they would bother a tummy... after all sodium is a main ingrediant in sodium bicarbonates and other things used to settle the stomach. All those fizzy things. Also many regular sodas are high is sodium so I know a lot of people who will drink those when they need the salt. Weird, huh.

Glad they dropped the florinef - that will help the headaches.

Oh geesh if it only it were that easy for me. I am lucky to get regular food down, much less salty food. I cant drink soda. The best I can do for now is drink nice sugarry (yuck) gatorade. I have gastroparesis. I need a new stomach, heart and pancreas. Pretty sad for only being 29

I hear you... I ask Santa annually for a new body as I want a bodyectomy. There are some drinks similar to gatorade - but in powder form - that have less sugar. Of course, I cannot remember the name but I try to avoid sugar as well.

So things are a little better with lower dose of florinef. Blood pressure is defintely down, almost too much and still have a slight headache on and off. Is it worth trying to split it so i take 0.5 in am and pm as opposed to just once a day???

Have you tracked when the BP drops? Certain activities, foods, moods (people!) seem to proceed a spell? Splitting the dose is not a bad idea if you can handle it but... it just may pop your dose down too low during the day when you are out and about. I am not sure the half-life but it may not be quite high enough to keep you going.
However, if you wake up low, it may be a good idea.

Yes I have tracked. I am low in the morning and higher in the evening. I am not at the point where i am getting dizzy or anything. I was just wondering if it would help to even things out. Wondered if that would help stabilize my blood pressure and help with headache.

Ask the pharmacist about the half life and if splitting will help even things out. If you are low in the morning, actually, that calls more for an evening dosage, really, if you think about it?

per my med book the half life is 18-36 hours. They want me to try a 0.1 in the morning and 0.5 in evening. Key will be if my head tolerates it. If I have headaches with it then they will try splitting 0.1 into two. We'll see what happens i guess.

Logically speaking, seems like the opposite would work better - the full pill at night and the half in the morning?
Then you could sleep though the headache and wake up with a BP and the half pill would get you through the day...
I hope you get it figured out so it feels right for you!

Hey rumpled, I just wanted to give you an update. I had a horrible reaction to florinef. According to my cardiologist only 5 in 100,000 get it. Too much fluid accumulated in my brain causing bleeds in my eyes even. I had horrible headaches. I had to undergo several spinal taps to relieve pressure to save my eyesight. Of course off the florinef. We switched to midodrine. Was pretty scary. Life changing experience that is for sure as I sit here trying to type barely able to see the screen. Just wanted to let you know what happened. No more florinef for me!!!

I am so sorry that you are going through all this. I am having a hard time right now with florinef as well. I take it for secondary addisons.
I am trying to taper off, and I am having an elevated pulse rate when standing.
I will keep you in my prayers. I hope things get better.
KM

That is AWFUL!
I am so sorry that you had to undergo all that. I had to increase my florinef as my renin keeps staying up around 16 and it is making me gain weight which is ticking me off but that pales in comparison to what happened to you!
It is a very powerful drug for a little thing... I always try to increase my salt first before taking more of it.
I hope you feel better soon!

I have POTS also. My doctor changed from florinef to nadolol. Much better, much less side effects. I hope you feel better soon.