I'm Sure This Has Been Asked, But . . . .

[dapy]

Hi,

This is my first post, and I am hoping for a lot of helpful feedback. I have been feeling awful for approximately five years. I got diagnosed with neurocardiogenic syncope and pots. I started passing out every two to three months, at which time, the doctor put in a loop recorder to see what was happening. The recorder caught the heartrate going down to 30bpm for three minutes. I needed a pacemaker and have since had one put in. Although, I do not pass out any longer, I still have life altering symptoms. My heart races with any activity (140's), I have excessive fatigue that is not made better with rest, I am lightheaded all the time, heat intolerant, weak and moody.

My question is this. Is there one medication that seems to help more than another. It seems like I have been given every medication available, but I do not tolerate medications well. What does everyone think of the SSRI's, midodrine, provigil, etc.? My quality of life on a scale of 1-10 is probably about a 2-3and I need to pick a medication and try to stick with it. I need advice. I need to hear your experiences. I feel like I am getting worse, and there is no hope in sight.

Please let me know what has worked for all of you.

Anxiously waiting for your help. Thanks

Peg

[Guest dionna]

Peg,

i have been passing out (about 350+) for the past 2 years. at first they put me on beta-blockers for chronic migraines but the results of the beta-blockers put me bedridden for 2 months, needing help to do everything, even go to the bathroom! so i was taken off of those and put on midodrine. well midodrine caused me insomnia, a high feeling, and more fainting. so then he haded florinef- not any better. and he tried me on mestinon- but i was very allergic. i found relief in neurotin for the migraines but it lost its juice so to speak. now i don't take anything, but as of today i am starting a new diet in hopes of that helping me out. i will let you know the results as time passes. i'm sorry that i am not much help but i just wanted to let you know that you are not alone and feel free to ask any question you want on this forum. even if you think something is "crazy", you still won't be alone so go ahead and ask. you might even get some good advice. hope you start feeling better and i wish only good days on you.

dionna

[Dawg Tired]

Sorry, nothing has helped me. I, too, have a pacemaker - dual chamber. It did not help.

[dapy]

Peg,

i have been passing out (about 350+) for the past 2 years. at first they put me on beta-blockers for chronic migraines but the results of the beta-blockers put me bedridden for 2 months, needing help to do everything, even go to the bathroom! so i was taken off of those and put on midodrine. well midodrine caused me insomnia, a high feeling, and more fainting. so then he haded florinef- not any better. and he tried me on mestinon- but i was very allergic. i found relief in neurotin for the migraines but it lost its juice so to speak. now i don't take anything, but as of today i am starting a new diet in hopes of that helping me out. i will let you know the results as time passes. i'm sorry that i am not much help but i just wanted to let you know that you are not alone and feel free to ask any question you want on this forum. even if you think something is "crazy", you still won't be alone so go ahead and ask. you might even get some good advice. hope you start feeling better and i wish only good days on you.

dionna

Oh my gosh, you think you have it bad to you listen to someone else. Have you had a monitor put in to watch your heart to make sure you wouldn't benefit from a pacemaker? Good Luck, let me know how the diet helps.

[MightyMouse]

Pacing is typically not a full answer for most of us here. Medications, dietary supplements, careful exercise and plenty of sleep can be useful. Please read the main DINET site for information on treatments, listed under "what helps". Each of us is highly individual, I don't think that there are two of us here on exactly the same regimen. Much of figuring out what works for YOU can be trial and error.

Information and Knowledge is power. http://dinet.ipbhost.com/index.php?showtopic=1954

Nina

[shayden]

I am currently on enough meds to kill every cow in Ohio but I have not seen that great of an improvement. I have fainted just about every single day for the past 3 years and I also can not stand for long periods of times. I am also curious on what meds are working for people so I can take that in to my Doctor and tell him to get off his butt and help me!!!

Just in case you would like to try them:

Toprol XL 200 mg 1x/Day

Midodrine 15mg 3x/day

Florinef .1 mg 1 in AM - 2 in PM

Depakote 1000 mg 1x/day (Headaches)

Good Luck and we all wish you the best!!!

Susan

[taylortotmom]

Hi there, I too have a pacemaker and no, it has not greatly improved my quality of life. But what has.... is fluids. I have a port and get 2 liters of lactated ringers a day. This has helped me more than any other treatment. So, something to discuss with your doctor- if iv fluids might be beneficial. Good luck.

Carmen

[AJVDK]

Hello,

I also have a pacmaker (Dual Chamber), and I now do not pass out as much, I have more problems then before. I been trying meds for the last year and still have not found the right one. I am still lokking for the med/ treatment. I hope for all of us we find it!

Amy