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Medication Free?


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I have been sick for 10 years this coming September. I was okay just taking a small dose of Inderal for several years. It seems as though the older I get, the more symptoms that I have. They added Florinef, Potassium supplements and salt tablets to my regimen over the past few years. I have been too sick to work and have had to quit the past few jobs that I've had in recent months and thus I have no access to health insurance. The State of Ohio will not provide me with any help whatsoever because they believe that I can work with no problem while passing out, vomiting and suffering from other IBS type symptoms. I am curious if there is anyone out there who functions without taking Medications? It's like my body is so accustomed to my medicines that it doesn't make a difference if I take them or not. I'm wondering if it's even worth begging and borrowing to pay for my medicines every month when they don't seem to make a difference in the way that I feel anyhow.

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Sorry to hear you're doing poorly. I find that the less medication I take, the better. I also have found that not putting stress on my body is the best thing I can do. If I am feeling icky, I sleep in a little later and go into work later - if at all. I am lucky to have a VERY flexible job where I can "usually" work from home. I take Sudafed around the time of my period and eat WAY TOO MUCH salt for my own good. If I start to feel shaky, I go home and lie down. (I live across the street from my job) As long as I don't let myself get too POTSy I can usually function. (Didn't stop me from ending up in the hospital in January though.)

Have you thought about stopping the meds for a month (under drs care of course) and then starting them up again? Maybe your body needs a break

I can only imagine your frustration with Ohio. Best of luck to you.

Sara

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I go on and off Midodrine (which is the only med I was able to tolerate). I know that some periods of my life, I could not have functioned without the medication (like final exams during college). But there are also times when my life activities don't demand much from me, and I can go along without the meds, and do because I just think that too much medicine too long will create side effects from long term use.

But then, usually after 6 months, I start to get memory problems (from low blood flow to the brain). And then I go back to the meds, go through adjusting again, slow recovery in cognitive function, etc. So, sometimes, I guess I feel that I don't need the meds when actually my brain is suffering underneath supposedly good functioning.

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this is another one of those things that's highly individual with regard to how folks are able to function...

for me, I cannot go without 3 of my meds (nexium-gi stuff, lexapro-seems to help with my gi stuff and bp/hr control, and singulair-asthma), but the rest I could probably do okay, but I'd feel not quite so good...

Nina

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It's pretty individual, but many of us do need meds to function. Some people are med-free because they can't tolerate anything. If you're too sick to work, then it sounds like meds might be helpful - there are lots of different ones and maybe there's a better combination out there than what you were taking. I hope you're able to sort out the insurance situation.

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Right now I know I couldn't go without meds. I don't think it would be deadly, but I would most likely end up in the hospital. I'm holding out hope, though, that I still may grow out of this, or at least some of it. So if I could be on less meds (I take 20-some pills a day) that would be great! If I were to go off meds, it would have to be VERY slowly, but I'm not ruling it out as an option eventually. Of course, if I have to stay on meds all my life, I'm okay with that, too. Just depends on the person.

Meg

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When I was still on my parents insurance I ran out of my Florinef and the mail was very late in coming (they have to do mail order for prescriptions) and I was terrible. I could hardly stand, I was so dizzy, and just felt plain old weird. I really do better on medication.

And now that I'm on Mestinon, I can defiantly tell when I need to take the next dose. When it wears off, I know it!

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I went off all medications for 3 months at the end of last year. I didn?t want my body to have to depend on the meds to be functional ? feel like if I can push through some of the bad times I?ll come out stronger in the end. My POTS doc thinks I?m nuts. It was a really stressful time (work, family, holidays, etc.) and I started getting really symptomatic. Went back on meds in January after doc asked why I would want to live in agony w/o meds while my body was trying to heal itself.

I wasn?t sure if I was feeling better because of the meds or because the stressful time was over so now I?m trying this experiment again. I?ve been med-free for almost a month and so far so good. Not that I?m back to my pre-POTS health yet though. Still taking a bunch of vitamins, supplements, salt and water. Best of luck to you!

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I tried going off florinef for a month and I couldn't even stand up at all (as opposed to standing for a minute ;) ) and had to lay down constantly so I am definitely required to take my meds to be able to function at all. Maybe your doc should adjust some of your dosages if they don't seem to be working as well for you. Sometimes that will help significantly...

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For years I went without any medication because none of them helped my symptoms. During those years, though, I did drink lots of water, get adequate rest, proper nutrition, and exercise. Now there are a few meds that do help me, and I wouldn't go without them.

I hope you can find what works best for you.

Rachel

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Maybe you should try going off more and more of them / staying off, but keep a small supply of each in case. Also obviously diet, sleep, fresh air, sun, etc can make an enormous difference.

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When we saw Dr. Low at Mayo, his advice was to take as few meds w/ as low a dose as possible. More meds - more interactions - more side effects. That said, few meds is not the same as no meds. At that time, he prescribed just Inderal, and since then we've added Mestinon (and Dr. Low ok'd that one). So far, that's it. Plus lots and lots of fluid and salt. And much less stress since he's quit school.

As a nurse, I always say - what is this med doing and how little of it can I take to have it do it's thing? I don't know that your goal should be "no meds" - I don't understand the absoluteness of that, but I do encourage you to use them as thoughtfully and intentionally as possible.

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