desiree942

were they monitoring your potassium while on the florinef. I was taking a 20MEQ potassium for over year but had major leg weakness and body aches, then recently I insisted we check it again (Dr. Grubb says even a slightly low level potassium or low normal is too much with POTS) and it was slightly low so they doubled the potassium and I felt a LOT better. I took myself off midodrine in april, I feel better NOT taking it, it definitely helped raise my BP but did not eliminate all my symptoms and I felt very anxious and my heart felt stressed. Now I only take florinef and cymbalta.

Daniel, send me an email off group and I will be willing to send you a recent article on POTS that was sent to me by the expert I saw, he has written and researched much about POTS. Maybe you can show it to your doctor and your parents. I sent it to my parents which helped and I gave it to my regular doctor who also treated me like it was all in my head.

Hi Daniel, I am sorry to read about your struggle. It is hard when your family and friends are not suportive, my family was not especially supportive. I found the most support from other people with POTS who co uld relate to my experience. Let me just say that many of us felt hopeless like you in the beginning! It's depressing when every day you wake up and are hopeful maybe it will be better and it's not...it's not like the flu where you know in a couple of weeks you'll be better. Once I got on medication (about 6 months after my symptoms started) I began to feel a little better, not great, but more functional...then over time and trying new medications, it became something I had to learn to live with...2 years later I am better than I was in the beginning and after seeing a POTS specialist in June I was told there was a reasonable chance I would continue to recover over the next few years and lead a pretty normal life...he said I may not ever be back to where I was before, but I'd likely be much better than I was at the onset. One thing about the focus everyone has on the "post viral" thing. Yes, this is what all the articles say and that is the best prognosis but I was told that there is post viral subgroup of POTS and abrupt onset subgroup and they are similar in terms of prognosis...meaning if the onset in sudden, not slowly over the course of your life, there is a pretty good chance of recovery over 2-5 years. I did not remeber having a "virus" but I had abrupt onset after diagnosis with an autoimmune gastrointentinal disorder -- that was likely the cause of my POTS. I was also told that exercise was the best thing I could do to help my recovery and that the BEST indicator in terms of future recovery is whether you show any improvement over time, if you do that's best.

I have continued to work full time since my POTS symptoms developed. It was EXTREMELY difficult in the beginning and very scarey not knowing what was wrong. I would work all week and then weekends not even leave the house until Monday morning, I would just rest up. Working meant no energy for anything else, no socializing, no household chores, I put what little energy I had into holding down a job. When I look back, I really only missed 1 or 2 days total in 2 years due to POTS and this was after my first acute episode. I have had to "hide" my illness at work which I do not recommend but I refused to quit working, and I really couldn't due to all my financial responsibilities. Eventually I was able to tell my boss I have "low blood pressure" not something life threatening and I have to sit if I feel dizzy. I put in terms he would understand. I could barely walk from my car to the evelvator or the restroom for the first 6 months but after I got stable on meds and eliminated the acute epiosdes of presync it was easier, not great, but I could do it. Now I still have mild daily symptoms but they are more under control and I am so glad I kept my job. When I saw Dr. Grubb for the first time in June he said it was GREAT that I still worked and he made a point to encouraged me to never stop working for many reasons, insurance, independence, etc. I know I am probably unique, since I don't pass out and also I have a job that involves sitting at a computer so I can function without standing. I've had my job a long time so I know it well, that helps. Each individual has to do what s best for their personal recovery, for me I wanted to keep working.

I was told that with joint hypermobility your blood vessels may not constrict as well and make you more likely to have orthostatic hypotension.

Dr. Grubb was scheduling for March 2007 when I was there but the time does pass and you can always call periodically and ask if they have cancellations. Maybe you could get on the list, you can always cancel later if things change. My appointment actually got moved UP six weeks because he was going on vacation.

Last week I had some blood work done and my dr. called me and said my glucose was 189 and we need to make sure I haven't become diabetic! Last time we did blood work it was 85. I am in normal weight range and on a very boring gluten free diet, few refined carbs. We are going to do a fasting glucose test later this week but now I am reading that florinef can aggrevate or unmask latent diabetes. I have been on .3 mg florinef daily + Postassium 20MEQ and after seeing Dr. Grubb last month we discussed the need to lower the florinef dose after I get stable on something else. (I am trying cymbalta) Florinef has helped the most in my treatment but he told me it is NOT a life long drug and he prefers a lower dose (.2 mg. max). Also, my major complaint with the POTS symptoms has been weak legs, Dr. Grubb said low postassium, even low but normal range was a problem when taking florinef. This week my potassium was low so my dr. doubled my potassium and within 24hrs. I noticed some improvement in the leg weakness.

I started cymbalta 12 days ago after seeing Dr.Grubb and so far I am tolerating it pretty well. I think it is just a newer generation of SSNRI and is supposed to have fewer side effects. It does make me a little sleepy. I do think it is helping a little with my POTS symptoms. I take florinef also. I was taking midodrine for about a year but decided to give it a rest a few months ago.