Please help me brainstorm..

[wareagle]

Hi All! I was hoping you could help me compile some questions for my next doc. visit re: my next step in treatment. I was dx. in Aug. and have been on 1/4 tab of florinef and 1/4 tab clonodine for several months. On my last visit the doc. added Midodrine which I've tried for about a month. The Mido. doesn't seem to be helping and I even feel a little more "dazed" when I take it..so I don't think I'll continue with it. I haven't been able to tolerated higher doses of my other meds. and am beginning to feel hopeless. I'm still "house bound". Some days I get outa' bed more than others..but for the most part I still feel so "unstable" that I'm scared to be up much. My body is very deconditioned but I don't have enough "okay" days to really start reconditioning it..I'm scared this will never end!!

I've been sick over 1 1/2 years..and wonder what's going to finally start working for me!

Any suggestions on other treatments? I do take a salt tab a day..prob. need to increase that..I was also interested in the "nutrition" discussion on the board. For those of you who have been able to return to a somewhat "normal" life..what helped you..and how long did it take? I know it's all very individualized..but I'm looking for some HOPE!! I'm going to discuss skipping my periods every other month with my doc. to see if that will help..any other suggestions that I can discuss with him? Thank you all for taking the time to read this!

Have a great day and..WAREAGLE!

[Gena]

Sorry to hear you're having such a rough time. I hope this visit to the doctor will give you some new answers and maybe another med to try. I would suggest you write down your primary, most dibilitating symptoms and go over them with the doc. (You may also want to fax your symptoms and questions ahead of time so the doctor is prepared). For instance is tachycardia a problem for you? If so you may want to discuss possibly trying a low dose beta blocker.

As far as deconditioning goes, there are exercises you can do in bed. I remember readong on a another post that someone had a physical therapist show them exercises to do at home in bed. If you just do a little tiny bit each day and progressively build up, it would probably help you quite a bit. As you know, being de-conditioned just worsens our symtpoms, but then we get into the vicious cycle of being too symptomatic to exercise...and then it seems like a downward spiral! But don't give up.

I stongly believe in the nutrional aspect, but like you said everyone responds differently. We each have our own bio-individuality when it comes to nutrition. If you want to email me, I'd be happy to share what's worked for and to offer any insight that I can. Best wishes to you!

[Rachel]

WAREAGLE,

I'm sorry you are having so many bad days with your health. It's tough when you feel like you're trapped by a body that won't work properly and you can't see any improvement.

As for treatment, you just have to keep trying. You might get lucky and the 4th medicine you try will work. Or it might not be until later on that you find a medication that works for you. However it goes, don't give up. Keep trying and keep fighting.

As for deconditioning, it can be hard to work against, but do what you can. The YAZ exercises are a good place to start. I don't always exercise officially. Sometimes my "exercising" is just making the bed (if I even stay out of it long enough!), sweeping the floor, or doing laundry. Learn your limitations and just do what you can do physically. I have had to learn not to push myself too hard. If I push beyond comfortable limits I will be in pain and be very weak the following day.

You might want to speak with your doctor about finding a cause for your dysautonomia (Do you have POTS?). Many people aren't able to find a cause, but if you do know it might help in knowing which medicine would most likely work.

I've had POTS for 10 years, possibly my whole life, and have tried numerous medications. Eventually I actually stopped going to the doctor because there was nothing more they could do. I found out on my own that certain foods either helped or exacerbated my symptoms. I used to be on a diet that included lots of raw fruits and vegegables. That helped me more than any medicine ever did. I always felt my best if I ate only fresh fruit for breakfast. If I ate anything else my heart would pound. And with my lunch and supper I ate lots of raw vegetables. I never got back to normal, but came close for a time. I guess it took about 6 months of eating lots of raw fruits and vegetables to feel close to normal. It is difficult now to get the fruits and vegetables I need since I live in the "middle of nowhere" in Alaska. But diet doesn't help my symptoms like it used to. I have actually found a medicine now that helps at least a little - Mestinon. But it is the only one that ever has.

I pray that things go well when you see your doctor and that you will be able to find some good options for treatments. And when you need hope, this forum is a good place to start!

Hope you get to feeling better,

Rachel

[wareagle]

Thanks for your input Gena and Rachel! To answer some of your questions..my most intense symptom is the feeling of being pulled down when ever I sit or stand. I feel like I'm constantly fighting to stay upright..get dizzy and dazed..and Lots of fatigue! The clonodine has helped somewhat with my anxiety and tachy episodes..but I'm only able to take it at night.

As far as the cause for my POTS..I had a B12 deficiency and then it appears I contracted a virus..possibly EBV. I plan on discussing other factors that may have led to it. I feel I've had some form of this all my life..I've always been fatigued and had some exercise intolerance..but I've always been 100% functional untill May 2003. Are there tests to determine predisposition..or genetic factors?

I also feel my period is one of the main things contributing to my lack of function. I always start feeling worse the week before..then during I'm still bad but a little better..the worst is the week AFTER my period..I can hardly get outa' bed. Then I may have a few days where I feel a bit better and it starts all over again!

Sometimes I wish I were a guy..perhaps I should increase my testosterone levels..but then I'd have to shave my face! LOL

Thanks again for your help! I welcome any more knowledge or suggestions!

[Guest tearose]

Hi and peace wareagle!

I know that wiped out feeling and the disbelief that things could ever improve...but they can! I do think you should have hope. It may seem impossible but just try...try to do leg lifts while horizontal on the bed! Just do some little something to keep your body in motion. Slowly you will be able to do more if you make small manageable goals for yourself. You make your own goals, maybe you will come up with something else, but try to get back into some gentle exercise.

I find that wearing compression pantyhose helps me manage much better, have you tried them?

The only other thing to suggest is to ask many questions of the doctor pulling from him what s/he knows. Be sure if you are going to work hard at making a new treatment plan this doctor is ready to get your phone calls. From my experience, after having a rough spell, it is not unusual to move ahead into wellness ten steps and then slide back six and have to make some adjustments. That may mean changing your medication, adjusting your diet, getting physical therapy...the doctor and you have to be able to speak in-between office visits.

good wishes, tearose