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Dizziness Caused by Change in BP, Florinef


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Twice I have reduced my dose of florinef from .2 mg to .1 mg at the suggestion of doctors. Each time, two weeks after I reduced the dose, I started getting extreme dizziness, as if the room were tilting or moving up and down when I was walking. This is completely debilitating (not to mention petrifying) and I can barely move around. The first time this happened, my cardiologist told me that my symptoms were not cardiac, because my heart and BP were in an acceptable range. So my GP sent me to an ear doctor. I got diagnosed with a potential (inconclusive) inner ear condition, and went to 3 months of physical therapy. BIG waste of time.

After I had almost completed the ear therapy (and increased my florinef back to .2 in the interim), a new neurologist told me to reduce my florinef and I got the same symptoms. This time my ear doctor told me it was probably not related to my ear, and I agreed. So I assumed that the dizziness was due to the decrease in BP because I stopped the florinef. I have been having tons of salt to make up for this and I increased my florinef again about 10 days ago, and Tues. of this week my blood pressure had spiked and I began experiencing the same severe "room-tilting" dizziness again. So now I am thinking that the crazy dizziness is just my body's reaction to ANY change in blood pressure, whether up or down. Has anyone else experienced anything like this with florinef or otherwise?

I emailed my doctor (who doesn't return my calls--let's not even get started on that topic), and she said that the body can react that way to even the smallest changes in blood pressure. I am REALLY peeved, because I brought these symptoms up with her before, as well as with my cardiologist, my ENT, another neurologists and also at the Mayo Clinic. Nobody even suggested that a change in BP could be causing my dizziness. Here I was upping my florinef and trying so hard to increase my blood pressure all this time, which probably made me even worse.

And now I am wondering what to do about my salt intake and florinef. I would love any suggestions. I have drastically cut down on salt for the moment, which has brought my BP down to a more decent level. And I am thinking that I should reduce the florinef in miniscule amounts (like 1/4 pill per month), to minimize the shock to my body. But I am also thinking I should wait a few days until this crazy dizziness calms down andI regain some strength. Right now I feel completely wiped out, as if I have been run over by a train.

Like many of you I feel exhausted, frustrated, lost and helpless. I know my problem is minor compared to many of the issues that others of you are dealing with. I am inspired daily by all of the people on this board. I appreciate having the opportunity to vent and all of the info and support that you have provided. Although I have a great family and friends, it is such a comfort to have people who understand firsthand what I am going through!



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Rita, I am sorry you are having so many problems because I know how bad the dizziness you describe can be. Before I was diagnosed I can remember the neurologist and ENT shuffling me back and forth, each thinking it was the other problem. At onset I had vertigo really bad where the room would just not stay still. I still get it sometimes particularly if my head is lying flat...don't know why exactly.

When I did get POTS dx and was put on Florinef my dizziness -- where I felt I was spinning, not the room -- increased dramatically and I would sit from morning until night holding my head in my hands to try to stop the dizziness (dsn't work BTW!)

I think you pose a good question about whether it is the med or just the fact that the BP is out of its "normal" range. Doctors would tell me that 90/60 is an "Acceptable" bp but I KNOW I feel terrible when it is that low. It is so hard to know if that is a contributing factor for you. I would guess that by trying to change your Florinef levels you may be getting out of what your body considers best and it is trying to make the adjustment and it is not working. I know you are concerned that maybe you now have too much salt. Would having it checked be worth it? It might give you information about which direction to go or discuss with your doctor. Just a thought.

I wish I had answers but when our doctors don't know how to help it is very tough, I know. Good luck and I hope you get some relief soon.

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I also suffer from this. Yes, it does happen when my Bp goes above or below the "normal" range. And remember, normal for us is not normal for everyone else. I get uncomfortable if my Bp goes above 130/90, the same if to low. And it just hits me when ever it wants to. Sometimes it last fro awhile, sometimes just a few minutes.

And if a dose of med works, while chage it? If a doc asked to change it ,I would like to know why.

good luck, Blackwolf

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Doctors who don't listen suck. Indeed, they truly do.

Doctors who need to be right suck.

Doctors who won't admit that the patient might know something... so you have to jump through hoops in order to make what should have been the obvious diagnosis seem like their idea.....also....... suck.

BUT BE THAT AS IT MAY- Florinef is a corticosteroid. Granted, it is a mineral corticoid, not a glucocorticoid, but tweaking one's own steroid doses is generally a bad idea. It is always wise to try and wean back steroids, to use the lowest dose possible. BUT if you are not getting the desired effect, your doctor needs to work with you. If he or she ain't working with you, find someone who will!

Familiarity breeds contempt, or so the old saying goes. Most of us here take Florinef like it was a multivitamin. PLEASE, PLEASE remember that this stuff is wicked potent! It is dispensed in one tenth of a milligram!!!!! To take 0.2 is to take a double dose. (And that's fine if it's prescribed for you.) To take only 0.3 mg is a triple dose. To take a quarter tablet a month would be only ingesting 0.025 mg and

expecting it to last 30 days. In reality the kidney will clear it long, long before then. It's up to our kidneys to reabsorb the salts and water that Florinef demands. The more meds we take, the more other organs have to work to - primarily kidneys and liver. (Speaking of kidneys, I'd personally take POTS, dizziness, fatigue, bed and all the nausea you could throw at me before I would take kidney failure. I know we get fatigued, but those folks on dialysis really, really whup us in that category! And many others!) Sorry to be preachin', but this is really important. Not only can we get rebound hypertension, but we also risk stroke with that a high pressure.... especially since many of us run a low BP to begin with, higher pressures are that much more of a shock to our systems. Anything over 180 systolic is considered stroke range for the general population. I would think that with us, that risk would be considerably higher. Nuff said.

Rita, if I'm reading and interpreting correctly, you felt the best when 0.2 mg Florinef was prescribed? Then stay there for now and cut back on your salt. Just salt to taste, not to medicate. Stay the course, rest for now and let your body try to sort itself out.

(here we go, talking to the doc is like taking that angry cat to the vet again....hold it very carefully or you will get scratched......)

Let your doc know that you went too high and want to work this out. I'd suggest a quick confession of how you got into this state and then focus heavily on how you need her guidance. Tell her you got your butt chewed out by an RN with POTS on the support group forum. Tell her I used foul, nasty, degrading language, tell her anything you want and use my name (my shoulders are broad if the cause is right.)

Then tell her something like "I know you would like me to decrease the amount of Florinef I take. You are right and I agree that it would be helpful to me to take the least amout of medicine possible, but I'm afraid of crashing and getting dizzy again. So I thought of a way to try and do this: "

Suggest the level where you feel the best and tell her that you want to stay on that dose for a month. Then suggest a very gradual wean, going to 0.1 for one dose a week, e.g.,

if you are on M-W-F-S dosing, take Monday's dose to 0.1 mg. See how you do for a month.

If you do well, try weaning Friday's dose to 0.1 mg.

If you don't do well, you can easily increase back to 0.2mg and you shouldn't have such a rough, abrupt change.

There's lots of ways to slice and dice this if your doc will work with you. You could try taking 0.1mg in the AM and 0.05 in the PM, making sure that these doses are 11-12 hours apart.

Good luck. Rest well and let us know how you do.

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Florinef can be so tricky. Too much and you feel like crap, and too little and you feel like crap, too. Finding the right dose can take a long time, and many people can't tolerate it at all. How do you do when you are not taking any? I actually experienced a LOT more dizziness when I was on the higher doses (0.1 and above) and I got so tired of it I began weaning myself from it, and lo & behold when I got down to 0.025 per day I felt great! So I stuck with that dose and it seems to help a lot- but when I try to stop it I get POTSy again.

I hope you can figure this out soon, no thanks to some of the less intelligent docs you've seen. Keep doing your research and bring in information to them if they tell you something you don't agree with!!

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I battle with Dizziness every day of my life. What works for me is I take Blood pressure tablets (Efortil) twice a day to help and eat 6 small meals a day. Have you had your sugar levels tested? If I eat sugar my body goes nuts and I feel like you are describing. Sugar is in everything and food is very important to me feeling normal. Have a Glucose intolerance test done, if you have not had one as yet. With our bodies you never know what new disease is hiding or starting up. Remember our nervous systems don’t work and this controls everything.

I have a fantastic GP. She is not a cardiologist or anything. But she is amazing. She listens, cares, advices and helps were she can. If she does not understand something she researches or phones specialist. She has never promise to cure anything or pretends to know everything. Why don’t you just find a good GP.. or what every type of doctor. Recently I could not take living in my body. I went for my monthly check up and got my pain injections. But the best part of my visit was spending time with Her. She helps lift my spirits when they down and gives me the strength to continue living in a body that makes life ****. Don’t spend one cent on a doctor that does not deserve it! :lol: After 10 years I refuse to spend anymore-unnecessary money. ;)

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My dizziness is more a sort of floating weird spaced out light-headedness. I feel spaced out and weird when i walk around especially in the morning. My hands go all pale and cold and i start feeling that kind of light=headed 'giddy' feeling like my head is going to float off or something.

If florinef actually makes that feeling worse i wouldnt go near it - its such a terrible feeling and i too have been told its my middle ear, then POTS, then middle ear again...

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Thanks for all of your replies. Yesterday was a really bad day, and I'm trying to have patience to just wait out this bad spell.

My BP before all this started was 90/60. Geneva, I am like you since I got the POTS, I feel better when my BP is a bit higher. I was on .2 florinef from April-July and I felt generally OK during this period, with the exception of one crash. Back then I wasn't really having loads of salt, because my cardiologist (non-POTS expert) said I didn't need salt if I was on florinef. I went to see a POTS dr. in July who told me I should increase my salt and wean off the florinef. The doctor was probably right in concept, but I went from 0.2 to 0.1 mg, and got severe dizziness and tachycardia begining in mid-August. The change in dosage was probably too drastic for my body to handle. I had a Mayo appointment in Sept, so I didn't want to touch my meds until after the appointment. My dizziness came down a bit by Sept, but I still had the tachycardia.

At Mayo, they also told me I should try to get off the florinef over time, but not to kill myself over it. When I got back from Mayo, I was still having high HR and tachycardia, so I upped my florinef to .15, thinking I would go back to how I felt in July. My HR dropped significantly after the first few days, but then in a few more days I got a huge increase in BP and I started getting the crazy dizziness again. I guess the extra florinef gave me problems this time around because of all the salt. That's when I FINALLY figured out that the dizziness was related to a change in BP, and not just caused by low BP.

I feel so stupid, b/c all this time I tried to increase my BP because I thought low BP was my problem. I was having headaches and ringing in the ears which might have been a symptom of hypertension, and I didn't really pick up on it. Herdswoman, I totally agree that it is better to manage my condition with salt, rather than florinef, to the extent I am able. I am going to wean off of it .025 mg at a time. If I get tachycardia, I will increase my atenolol, which I understand is a much safer drug.

Geneva/Ling, my blood salt, 24 hr urine salt and blood sugar are within the normal range. (Basically I am one of those people that tests normal for everything except the TTT and still feels miserable!)

Ling, you're SO right that I need a new doctor. I and others are having trouble finding a good doctor in the NYC area. I also am planning to upgrade my health insurance for next year (I'm not allowed to before then). That will improve my options a lot, and so I will wait to switch doctors then.


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