ellen

Sophia-

I had a total abdominal hysterectomy three years ago (at age 48) and have no regrets!

No more cramps! No more mood swings! Except for the absence of a period and the associated pain, I feel the same. I do use the estrogen patch, which keeps away the hot flashes, but you may never even have hot flashes.

As far as the prep, ask your doc about your concerns. I was told to use an enema the night before and it was really no big deal. I also took a double dose of florinef to prepare for the anesthesia and all went fine.

I hope you find what works for you.

I just asked my PCP about the flu shot because I'm on Florinef and one of the many warnings, "patients should not be vaccinated or immunized while on fludrocortisone therapy" concerned me enough that I brought it in to his office to ask his opinion.

My husband, who was with me, says he made a face when I read it to him. He said the flu shot should be fine.

My mother-in-law only shops at the stores that have the electric carts.

You can also call the store and ask if they have a "shopper" to assist you. Depending on your local laws on disabilities, they may provide a person to wheel you around and help select merchandise.

Be Still- thankyou for the update, and sorry to hear you were denied. Hope your absence from the forum means you are feeling better. Good luck in your appeal. - Ellen

I found "psychic derangements" among the side effects listed at this site:

http://www.rxcarecanada.com/Florinef.asp?prodid=771

The long-term effects were what concerned me.

I take too many other meds that could interact with florinef, and I am beginning to have difficulty healing. Small cuts that should heal in a few days take weeks, even months.

Sky- I have been on florinef for 8 years. The side effects are too numerous, but include possible psychotic episodes (!!!), interaction with too many drugs, etc.

see http://www.drugs.com/cons/Florinef_Systemic.html

for the whole list.

My compression hose came with a slipper-like thin, shiny, slippy thingy that you put over the toe of one foot and then pull the hose over the slipper-like thingy.

the shiny slipper-like thingy on the other leg and start over.

There must be a name for the slipper-like thingy but I don't know what it is.

Jan, could you give us the brand name of your hose? That thingy sounds so helpful- but don't you need an open toe to pull it through? I found the open toe squeezed my toes so tight, they swell up, so I switched to closed toe.

But I would sure like to try anything that could help get them on ! Thankyou!

Dayna, these are great questions. I'm thinking of asking my doctor to take me off Florinef because of the serious long-term effects, and switch to midodrine, but I have the same concerns.

Does anyone know the long-term effects, if any of midodrine? Thankyou for your input, Ellen

Dear Willows, I hope it all goes well for your whole family, especially Mike. (But tea and scones sounds good to me!) - ellen

I just discovered that compression hose slide on alot easier when I rub baby powder on my feet and toes first!

I developed asthma and severe allergies (resulting in 5 years of immunotherapy) when the POTS symptoms appeared, also lost a tooth to resorbtion . I still have allergies to so many things, I take Clarinex daily.

I started symptoms after a viral infection at age 35, but doctors couldn't find anything wrong with me.

I was finally diagnosed at 50.

Jacquie- I just got in from my gyno- I have a lump which is different from the many others I have (it itches), and my doctor thinks is normal, but we will do fine needle aspiration next week. So I sympathize with you. Try not to worry, it's a waste of energy (precious commodity).

No need to borrow tomorrow's troubles, today's are sufficient. Hope you're feeling better, ellen

Rebecca,

I'm so sorry you have had to put up with that kind of treatment. I have found when I have someone with me during the appointment (it's rare), I get more respect. I always go with my husband to his appointments, and the doctors treat him like a prince.

Maybe if you can get someone to accompany you to your doctor visit, that PA will change her attitude. First of all, she won't speak so roughly in front of a witness. And she may take you seriously when she sees that someone else does.

Wareagle,

I have had back trouble for years. The best help was from a physical therapist who gave me exercises which strengthen the back. For now, you just have to take it easy until your back calms down, but when you recover, do those exercises!

I have a chiropractor I visit whenever my back goes out. If I don't go and get adjusted, I can develop the spasms again, and that just takes time to calm down.

The chiro gave me a cream called "sombra" which smells like eucalyptus and citrus, and has a cooling effect. I don't know if it does anything, but I use that, with a heating pad, aspirin, and REST. Hope you're feeling better soon.

Jacquie-

I give my kids an Herbal tea "Throat Coat", made from slippery elm bark. It tastes awful, but gives real bonafide relief from sore throats as evidenced by the fact that they are willing to drink it.

I can tell if they are really sick or just trying to get out of going to school by telling them I'll make them a cup of Throat Coat-they'll only drink it if they really hurt!

The brand I use is put out by Tradional Medicinals.

He was a little concerned about doing those due to heavy reactions on some of the injections for testing like lots of swelling from such a tiny amount. The other thing is that if I react I cannot have epi-due to arrythmia possibilities. I

Bee- yes the epi is a concern. I did have a reaction to the shots (sneezing in the waiting room) that required epi and afterward I was WIRED! The reaction to the epi was worse than the reaction to the allergens, in my opinion. I was exhausted for two days afterwards.

One more thought- washing your face several times a day cuts down on the pollen in your nose - a simple way to relieve symptoms. Also inhaling salt water to cleanse the nose.

I have never had anxiety that I would talk to a doctor about, but I have a funny reaction whenever someone enters the room unexpectedly- I jump and scream. I am SO sensitive, it's ridiculous. My son walks noisily into the room so as not to scare me, but I still jump.

I assume this is part of the POTS, since I don't have any fear mentally, it's just my automatic reflex to yell- it's completely unreasonable, I admit, but I have no contol over itl. I just laugh at myself.

Bee- did the allergist mention immuno-therapy? (Shots).

I did that for five years for weeds, trees and grasses, and eventually my allergies subsided. That was over five years ago, and I'm still much better than before.

It started out 3 shots 3 times a week , slowly worked up to once a month. It greatly improved the asthma also (rarely get it, and it's mild now). Hope you find some relief. -Ellen

Rebecca,

Congratulations on getting a diagnosis! Isn't it a relief?! -Ellen

Rebecca, I have to edit my reply. I was told I do NOT have MVP, although my symptoms were similar. I was not aware that there is a MVP syndrome, so I apologize for passing on my misinformation.

This is why some of us have gone through so many doctors and years without a diagnosis!

Dear Suzanne,

May I suggest you direct your psychologist to the Dinet website, on the left-hand side, look under POTS Place, click on "Symptoms". Halfway down the list is "Fatigue (can be disabling)" .

Thankyou Roselover for that very informative report! I hope you get some improvement from the meds they prescribed. -Ellen

So good to see your posts.! Hope things are looking up for you both. -Ellen

Futurehope,

I have been taking .1 mg of florinef for eight years. It increased my blood pressure and eliminated the fainting, which was a big improvement. I was very happy with it.

I don't take potassium supplements, but eat a healthful diet of nuts, avocados, tomato products, yogurt and fruits and veggies (those are the list of foods that are high in K).

I do have to eat salt and drink water or I feel weak.

However, I am hoping to get off the florinef, as the long-term side effects are quite serious. My doctor never mentioned any side effects, but I bruise easily, cuts don't heal for months, I feel muscle weakness, and am concerned about possible mental problems (included in the list of side effects,"extreme psychotic episodes"!!!)

"The mind set on the spirit is life and peace." -Ellen

Dear Rebecca,

I'm sorry I have to edit my post- it had no text.

I hope you get some good news from your doctor. I know how you feel not having a diagnosis. I have had symptoms for 15 years, and have been treated with Florinef for 8 years without a Dx.

The good thing is there are a variety of treatments available, even if you don't get an official Dx, and it sounds like you have a good doctor. I believe you will get an answer sooner or later, like all of us. Please let us know what the results are, - Ellen