Nicole has profound fatigue

[blackwolf]

Dear Beverly,

I did ask the doc about an alternative to the florinef. There are a few generic alternative in Canada. But you have to try the web for those. But as I understand it there really isn't much out there.

I am looking into weight loss surgery and i also am looking for an alternative to try. As to the Lic. root, he said try a really high dose ( 1200- 2000 mgs) just thought I would let you know what he said.

Blackwolf

[Nicole's Mom]

Blackwolf,

Thank you so much for asking your doc about the Florinef alternative. You are also looking for an alternative- wow - surgery- are you in the inquiring stage on that or have you gone further? Have you ever tried the licorice- you say you are also looking for an alternative. Nicole has just been going up on the licorice dosage. I know everyone responds differently to meds and supplements but I will let you know how she makes out.

Presently she is at @ 1400 mg of licorice and she thinks she might be starting to retain some fluid. She is still bedridden with lots of symptoms but maybe as she goes up on the licorice it might help- if indeed it helps her retain more fluid. She is still doing lots of fluid and salt loading as well. Today the nurse will go to her house for a blood draw- potassium check (plus thyroid and one other thing- can't remember the third).

Thanks again for asking and getting back to me. I will search around for the possible Canadian generic alternatives and let you know if I come across anything useful.

It sounds you are doing better from all that difficult situation -as you said previously you felt as if you were finally moving on with your life- does it feel like you are on your way? And your daughter? Is she okay?

Best Wishes,

Beverly

[Jersey Girl]

Dear Nicole and Beverly,

I have been reading these posts since yesterday and it reminds me of how I was 2 1/2 years ago. I stayed in bed as much all the time because of the severe headaches and dizziness and weakness and muscle pain and spasms. Looking back the only medication to help at that time was Neurontin (400 mg four times a day). I was yet to be diagnosed with POTS. Talk about role reversal, I had to have my then 21 and 22 year old daughters take turns staying at home with me to take over because I also had my first grader at home who needed care and I needed so much care myself. My daughters were such good coaches and would hold me up while I would attempt to walk down the driveway. Eventually (6 months later) I was able to do a gentle 20 minute ball tape with my daughter by my side (most of the exercises were in a supine position with the ball) , not the way she did, but at my own level of comfort. These exercises I believe helped strenghten my legs because it is SO easy to become deconditioned lying in bed for any length of time. I was eventually able to lower the dose of neurontin over the course of a year. I did have a "crash" after 10 months and went back to more bedrest for another 2 months. I really think the change in the weather to more cold has also set me back recently. I feel like the "old lady" (52y) on this site where most are a lot younger. My recent D & C has also exhausted me. I was told to take it easy for just one day after but I know it will take me at least all week to recover from this setback.

I spent a fortune on waist high compression hose with limited benefits. Since most of the pooling occurs in one's lower legs I have resorted to heavy compression knee highs. It is also possible to put on two pairs of regular support hose. I also do leg strenghtening exercises 3 times a week. One must start very slowly after these setbacks and keep a positive outlook in spite of extremely slow progress.

My husband's cousin's daughter had my exact symptoms her junior and senior year of high school. (never had a tilt table test or diagnosis) The only residual she has now at 29 is a little imbalance diving headfirst into a pool.(which she avoids) She is married and her baby is a year old. Her mother was also by her side continually during those 2 years. I know how hard it is for your family. I pray that Nicole will come through all this soon. martha

[blackwolf]

Dear Beverly,

As to the lic. root, yes I tried it, no luck. I tried about 2200 mgs for about 3 weeks.

Yes, we are all moving on now. My parents, mostly my mom, is in the final stages of transfering all of his money to one account that he can access from prison. He will be sentanced on Nov 29th. He has both state and federal charges and I'm not sure if he will serve his time here (in Sioux Falls SD) or federal prison in Nebraska.

Either way, I'm through with him. When we sold a lot of his belongings, I bought several items ( I know, how can you do that!) that we could really use. We took the snow blower, some shelves, books, movies, CD's, garden tools, and some kitchen stuff. We made arrangements to pay him $100.00/month till payed (about 8 months).

I'm not so sure about surgery now, I was told to try a gluten free diet for 10-20 days to see if it makes a difference (yipee, yahoo, yahh, boo, hiss hiss )

I'm not looking forward to it, but we do what we must.

My daughter has finished her therapy, the person she saw was very impressed how quickly she seemed to talk about her feelings and said she probably will have trouble when she becames sexually more mature, but seems to be doing well now.

Thank you for asking.

I hope you have some better luck.

Good luck, Blackwolf