Are There Any As Needed Drugs For Pots?

[DSM3KIDZ]

As I mentioned in the past with my POTS I have a few manageable (not great) weeks followed by a few can't do anything weeks. Is there any meds I could mention to my neurologist that might make my bad times easier? I just need your imput, I know your not doctors but when I ask her she just says EXERCISE which is easy for her to suggest seeing she's not in my shoes and dealing with limited energy and 3 young kids. So I was thinking if I could find a med to help stabalize things than I could maybe start a workout program.

I'm sure your all searching for the same thing but I just needed your imput on a medication you can take as needed.

Also I'm going to start a bp/hr log for her and I have no idea what to look for. When should I take it and what is the normal range (if their is one). I'm not sure my bp but my hr is usually in the 90's.

Let me know your thoughts

Thanks

Dayna

[Guest dionna]

personally i would suggest being very careful if you do some sort of exercise pogram. how long have you had POTS? when i first started passing out i still worked out vigoursly evryday outside of a gym and inside of a gym. eventually the gyms told me to not come back because i was passing out on the weights and treadmill running. then i started to just do pilates but i just didnt like having to be infront a tv so i developed my own excercise routines after i was my company's "physical trainer" for the overweight and remedial.

as far as meds. okay some of the people on this forum take these drugs as well or have taken these drugs, all of which i am sure have had diferent outcomes.

propanonol- beta blocker- gave me 3 wonderful months without a single faint---- it crashed and so did i leaving me bedridden and literally having my roommate holding me up on the throne and in the shower. some one had to pick me up and tote me everywhere or i was in a weelchair but i even passed out sitting in it. everytime i was picked up, i either almost passed out, vomited or did pass out. i spent my days sleeping atleast 20 hours a day. the drug just became ineffective in my body. thus i was taken off after 2 months of the bedridden.

midodrine- felt like i was on speed, no appetite really, was wide awake all the time and only slept a few hours a day if i went to sleep. and guess what i did passed out every couple of days and i was in a wheelchair for a few months. i only passed out standing though. some people like it and midodrine does work for a lot of patients.

florinef- i didn't see anything different. just a bad taste in the mouth.

neurotin- awesome drug for a little more than half a year. it was for my migraines. i guess its effectiveness just ran out. but atleast i had some comfort.

mestinon- immediate allergic reaction- but studies have been done on it at vanderbuilt and maybe the mayo clinic? it worked good on most of the study cases.

i do want you to be aware that these drugs might really do you some good. they just didn't do so well with my body. you can look any of these drugs up on the internet and it will give you a better idea. i hope others share with you what actually works for them. i just taking drugs and i let my body do whatever it wants but i do pray for the miracle pill someday and i will continue to try different medications as they become availalbe to me.

[Sunfish]

hi dayna -

i think you're asking primarily about short-acting meds, i.e. things that can be taken as needed for rougher times? if so, the med that has helped me some over the years on an as needed basis (or to increase doses as needed) has been midodrine/proamatine. this was all with the blessing of my doc. at times i also have gotten IV saline to get me over particularly bad times. and of course extra fluids & salt.

other short-acting drugs (though to varying degrees) include some beta-blockers and mestinon. also ritalin, concerta, & adderall are fairly short-acting (i.e. a day or so). i haven't used any of these on an as-needed basis but theoretically they don't need to be in the body for a long time to have some effect.

hang in there,

melissa