Hello Dear Friends Have Many Updates.

[heissovereign]

Hello, so I left the hospital on march second after finding that many of you were right and my doc gave me too much Florinef which put me in hypertensive crisis.

So I went home after five days with 17 pills aday which consisted of 0.1mg of Florinef 3 times a day, 10 mg of midodrine 3 times daily, 300 mg of gabapentin 3 times daily, 1 g of sodium chloride 3 times daily, mag oxide 400mg 2 times daily, potassium chloride 40 meq daily, sertraline 30 mg daily.

Went home And saw recovery after a little while I had one great week, out flying kite with my two year old. And then Saturday my bp spiked really high and I started convulsing I quit breathing and Chest compressions were done I started breathing and was rushed in

I was in Icu for 4 days with about 24 convulsions daily I was told. I was released yesterday with home care with a diagnosis of conversion disorder along with my dysautonomia.

Well I noticed a correlation with my midodrine and convulsions so I called my docs office to ask if I can lower doses so they let me drop a dose, and my rash I had on abdomen went away and my convulsions stopped until my midodrine dose this morning. I had three and called my doc and told them my concerns of allergic reaction to the med and doc pulled me off of it and no convulsions anymore and rash is disappearing, so no conversion disorder. Just severe allergy.

Oh and they implanted a loop recorder to try to help diagnose more of my symptoms. It has been a scary two months and without midodrine my hr is sky high and can't breathe well but I have a nurse with me when my husband isnt. I have to be separated from my kids during the day but they are taking care of, i am distressed by this but its best for them.

my home nurse is helping with disability and my neuro and cardio and ep are working on getting stuff set up with vandy. my brother has given me his extra iPhone on his plan so I can keep in contact with him so I have web Access so will try to update often. tomorrow will be first day without any midodrine so please pray things go better with hr and blood pooling. I thank you all

[Maiysa]

Oh my gosh, I'm so sorry Heissovereign. Ah, this is terrible. I pray you are can heal soon and feel better. May I ask if you have ever had a tryptase test taken? The rash is interesting and made me think of this. I don't know much about any of these things but just a thought. I'm sure you have enough people telling you what they think is wrong, but I have had convulsions several times and they found my tryptase levels are high and could be a correlation. Still in middle of testing. Hang in there. Thinking of you!!

[Rachel]

Oh my goodness! I have never heard of such a severe allergy to midodrine! How scary. I'm so glad you figured out what was going on. Thanks for checking in with us. I've been wondering how you were doing. I hope that you'll be able to keep in touch now that you have an iphone with a data plan. Yay!

I hope that things go better without the midodrine. Have you ever tried compression hose? Maybe that would be a good way to help keep your blood from pooling without the severe allergy risk.

Take care, rest well, and feel better soon!

Rachel

[LindaJoy]

Hi, Heissovereign,

How are you doing? I hope this finds you doing ever so much better. Please hang in there and know we're thinking of you.

Lindajoy

[tachyfor50years]

Oh dear, my prayers for you to get better soon.

Several years a go, I had the same reaction to Florinef and Midodrine but my EP was so rude and never believed me when I called him, in a mocking tone he asked me if I am reading the side effects from the med's package insert! he hurt my feelings and made me feel worse. I never went to the ER because thankfully I was able to survive on my own.

Please let us know how you doing now.

Take care and thank you for sharing..