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Quick Question: Does Anyone Here Not Take Any


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Hi, everyone,

I'm coming off of my last medication now, then I will be med-free. That just doesn't seem right, having POTS as badly as I do. I've not been med-free for years and years. Are any of you med-free? How well do you do? I'll admit, I'm a bit scared to be going it without meds.

Thanks.

Linda

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I do not take medications whatsoever, not even tylenol for headaches and such. I stay mentally active, and drink a bottle of gatorade and water throughout the day (I found that drinking too much water will make symptoms worse). I try to eat crackers and things throughout the day. If I'm in a crappy mood, I may take herbal supplement (st. johns wort, skullcap, etc.).

Granted, I don't seem to suffer as bad as some, and currently, I'm not having an episode/serious symptoms. It seems mopeing about all day worsens symptoms, too. My job requires serious mental devotion that keeps me active, and I love it. That is my drug, so to speak.

Hope things work out well for you. I'm sure you will be ok. Just listen to your body if things get a little crazy.

Good luck!

-a

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Hi,

I am currently not on anything, but it is because of no insurance. I have my ups and downs, so not sure what is going to happen when insurance come along.

Without a DX though, I don't think I'm going to go back on meds untill they find out for sure what's going on with me.

Good luck,

Amber

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Linda,

I've been med free (for POTS) pretty much from the beginning. It was my choice since most of the meds I tried caused new symptoms. I "prefer" my known POTS symptoms. I don't like adding new symptoms to the mix of what I already cope with.

So, over the years, I've developed my own ways of coping. This is not a perfect solution. But it is what I choose.

My philosophy has always been, "I'm bad enough already. I don't want to take anything that makes me feel worse."

So, how do I cope? Exercise

a swig of 1/4 tsp of baking soda in water (salt) when feeling particularly low

eating every three hours (and not overdoing sugary foods)

trying to keep to a doable sleep schedule

getting outdoors (especially with my husband) to get a change of scenery once a week

(if possible)

getting out for quick errands on a routine basis (if possible)

pacing my activities so I can handle what I need to

praying and reading my bible

conversing on this forum

getting a daily devotional from other chronically ill people from restministries.org

taking a multivitamin

avoiding foods with additives

I'm sure I've forgotten some things. But some of the items I've learned on my own, and some I've learned from everyone else on this forum.

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Thanks, everyone, for your replies.

Hi, Nadine. Actually, my doctores didn't consciously choose for me to be med-free; I've just been taken off of all meds that I was on, for one reason or another, so that now I'm not on any, or won't be once I take my final Cardizem pill. I was taken off of all asthma medication at the beginning of last year, as it was determined, I think, that my breathing difficulty wasn't asthma but more POTS related. I was taken off of my anti-depressant last year (and I haven't felt good since), and have been tried on many since, but I haven't adjusted well to any of them (and I've tried a big handful of them). That left me with only my CCB, and my doctors (two of them) said that my bp is running way too low for me to continue on the medication. That leaves me with nothing. I've written, in my other post about the use of beta blockers, how my body has changed since this whole ordeal with medication changes, CCF chronic pain program, etc., and how I can't seem to take any medications whatsoever, if anyone is interested. It's just weird, and scary.

Anyway, thanks again, everyone.

Linda

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Linda

You said "I was taken off of my anti-depressant last year (and I haven't felt good since)" Is there a reason you can't go back on the antidepressant thta you felt better on? My D take about 8-9 meds a day. I think people should do whatever makes them feel better - drugs or no drugs. There are no brownie points in life for being "natural" - nor is it necessarily healthier. Herbs are medications too - just less regulated. Reality is sometimes "mother nature" is wrong and I hope people don't feel guilty about fixing it.

Louise

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Guest dionna

i made myself drug free, instead of the docs doing it. i hated the side effects! i was definately allergic to the mestinon! i tried a lot of them and really hoped that each was my miracle pill. i took them almost religusly- that is such a strong word so i don't want to say completely. but i don't think any helped me; instead made me feel worse. wait i take that back, neurotin was awesome but it lost its magic. :) i feel better mentally cause i am not worrying about all those odd things being in me. ive gotten use to all the symptoms and me and POTS are "at peace" or atleast at an understanding. i know my boundaries with it and i try to stay within them or i will pay! i never go unpunished if i push myself too much. one of the marine corps mottos is "adapt and overcome." so i just try to go by that and i count my blessings. those are my "meds".

venting a little since i am thinking about it now: i always hate to see people always taking the little things they are able to do for granted; that we can only dream about doing now. like driving, being able to go grocery shopping, clean the house, etc. not only do they take it for granted but they complain about those. thats off the subject but... somehow it popped in my crazy head.

i hope that you are able to function being "weaned". let us know how you feel. be careful to begin with and just see how things go for you. i pray only the best!

dionna :)

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I'm on Lyrica 50mg 3x per day. In April of '05 my symptoms started and I spent about 7 months "pushing" Doctors to finally get me a tilt test. All they wanted to say was it's Anxiety. Well I'm a clinical exercise physiologist and when your heart rate goes fron 50 to 90-100 when you stand up, have reactive hypoglycemia w/out diabetes, and almost pass out in your car on the way home from work thats not normal. Was taking XanaxXR 1 mg/day and they took me off in March after 7 months. It was working well and my life was getting back to normal. I could exercise fairly well and didn't have any of those wonderful "hyperadrenergic attacks" that I could feel through my whole body.

After they took me off I had a "flare up" in April '06. For the first time I took a 6 week leave from work, had more testing done (most of which was from Dr. Chelimsky at University Hospitals of Cleveland). He finally diagnosed me with POTS even though I asked cardiologists, Doctors etc. if I had this since August of '05. I'm not sure if the Lyrica is helping or not. It is used to treat diabetic neuropathy or seizures but Dr. Chelimsky is a top neurologist for POTS and I decided to give it a try. I have about 1 month left on a 4 month trial and have had no hyperadrenergic attacks since on it. I still get tired and weak from standing to long and have a great deal of trouble dealing with heat and humidity(not easy when you live in Cleveland Ohio during the summer).

It seems that I don't have POTS as bad as alot of people on this site but it is still so quality of life destroying. I wouldn't be scared to go off of meds for a little just to see if you can tolerate it. Our bodies want to get back into homeostasis and I pray every day for all of us who have this syndrome. For the most part I increased my salt, always drank plenty of fluids (so that was easy), wear 30-40 mmHg thigh high compression stockings(for work or when I know I'll be standing for longer periods) and try to eat small meals every 3 hours or so. Non pharm measures can definately help. My resting HR is in the 40-50 range so I wouldn't let them put me on Beta blockers and they agreed. I think the frustrating part is that although we know there is no cure we feel like we should be taking something to help. I wish there was something that helped helped everyone! I have also been taking acupunctur for the past 5 weeks and it seems to be helping. Again it may be a placebo effcet but hey if we feel it helps....

Being a 33 yr old male who was in very good shape with no previous health problems this whole thing has been very frustrating. It's hard to exercise, golf or go anywhere without always having to think am I going to have an episode. I truly hope that when you go off your Meds you do well. Everyone keeps telling me to remain positive and although its very hard I see when I do I usually feel alot better. Sorry I rambled for so long.

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I was recently diagnosed with POTS (this week, actually) and have not been put on any medication yet. My doctor offered to prescribe a low dose of steroids, but after hearing the long list of possible side effects, I decided to try diet modifications (added salt, etc.) first. I don't have any severe symptoms right now, so I didn't feel that the medicine would be worth it for me. If I were having severe symptoms, however, I would have opted for meds. If medicine helps improve your quality of life and it isn't causing any adverse effects, I don't see anything wrong with it.

Right now, I'm just trying to understand what POTS is. I've always had weird, seemingly unrelated symptoms that doctors have previously dismissed as "stress" or "anxiety." It made sense in the past, when I was in a high-stress job and was recovering from a bad car accident, but I felt confused and frustrated as my lifestyle became less and less stressful, and my symptoms remained the same. I don't know much about this condition or its treatments, and I'm hoping to learn more about it and how to best deal with it.

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It was working well and my life was getting back to normal. I could exercise fairly well and didn't have any of those wonderful "hyperadrenergic attacks" that I could feel through my whole body.

Hey there BGSU - I'm soon to be 33 yo male as well. I'm curious about your hyperadrenergic attacks. I used to be very athletic. Now trying some experiments with exercise v/ no exercise. Do you think these attacks are worse when not exercising? I seem to get them more acutely in the winter when I don't get as much exercise. Usually in the evening or during sleep - sweating, pounding heart (not quite tachycardia, but a significant delta), agitated. Not sure what your "hyper" attacks are like, but curious.

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I do not take POTS meds not because I don't believe in being natural, but because I tried all of them, and the side effects I felt were stronger/worse than having POTS and accepting the way my body works and accommodating to that.

Same for my daughter until she started Procrit last year. She is almost fully functioning, I would consider myself the same, and we attribute this to exercise, and intake of additional fluids/salt, accepting our lives are going to be lived with POTS and that requires changes that we constantly make in order to find balance.

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My med comments were only that for many - meds are necessary. " Faith" and "balance" and "accepting" or whatever ( while an very important part of the picture) doesn't work. There is such diversity in the severilty with these illnesses and how people react to meds (good and bad). I

Louise

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My med comments were only that for many - meds are necessary. " Faith" and "balance" and "accepting" or whatever ( while an very important part of the picture) doesn't work. There is such diversity in the severilty with these illnesses and how people react to meds (good and bad). I

Louise

I would beg to differ that balance and accepting don't work, as well as disagree that for "many" POTS meds are necessary when it seems there are a fairly equal number of people on this forum that are just as NON-functioning while on medication, as there are functioning taking meds. We must remember POTS is a syndrome--collection of symptoms--with no cure.

I have NO problem with those that take meds, I had a problem with MYSELF taking medication only to cover up symptoms then adding more undesirable symptoms brought on by taking the meds. By ACCEPTING that if we must have tachycardia in order to raise our blood pressure my daughter and I live life with tachycardia, we also do the same acceptance/compensation with many POTS symptoms. By drinking extra fluids, taking in extra salt, not expecting to live a "former" life and do the activities we did at an early age, and that we MUST stick with an exercise/weight training regimen we have BALANCE.

Just as I recognize there are people who cannot deal with symptoms and take meds, please do not see the answer as cut and dry, simply because others have chosen to go another route. Bear in mind that both my daughter and I TRIED many, many meds, and trust me if one had worked for me I would have gladly swallowed that pill, I was not fortunate, so I found another way to function which works just fine for me. And that doesn't mean our POTS is any more/less severe than anyone else on this forum, it just means we learned to live with chronic illness.

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It was working well and my life was getting back to normal. I could exercise fairly well and didn't have any of those wonderful "hyperadrenergic attacks" that I could feel through my whole body.

Hey there BGSU - I'm soon to be 33 yo male as well. I'm curious about your hyperadrenergic attacks. I used to be very athletic. Now trying some experiments with exercise v/ no exercise. Do you think these attacks are worse when not exercising? I seem to get them more acutely in the winter when I don't get as much exercise. Usually in the evening or during sleep - sweating, pounding heart (not quite tachycardia, but a significant delta), agitated. Not sure what your "hyper" attacks are like, but curious.

More so when not exercising. Exercising helps in allowing your body to adjust better to catecholamines and their effects. I call it a hyper attack because I actually feel a rush from around my kidneys, down to my feet and back up. I was told by a DR. that it was most likely an adrenaline rush or a "hyper' attack. Some doc's buy into this others dont. I have had less than 10 of these for 15 months. Usually they happened when I drank juice alone or had full caff coffee. Since I have reactive hypoglycemia and a sugar rush usually induces a release of adrenaline to help the insulin adjust your sugar level this could explain the juice. The coffee is a stimulant that helps to release adrenaline so its my fault when I need it fully caffienated.

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i'm quite certain that no one was stating or implying that balance and accepting are not VITAL for everyone. or that meds vs. no meds necessarily equate with "how ill" someone is.

i think it boils down to the fact that we are all different. some are going to have a better quality of life with meds, some without. it depends on one's initial health, reaction/response to meds, symptom "preference" (weighing pros & cons), etc. as well as a million other things, some known and others not.

but the fact that some on a number of meds still have a very low level of functioning does not mean that without meds things would be better or even the same. for me personally i would have been far more disabled years ago without meds. i wouldn't have graduated from college, been a varsity athlete for several years, held down a full time job for 2.5 yrs, coached & taught hundreds of kids, driven, been at many important events, etc. and even though i now probably have one of the longest med lists on the board and am one of the most incapacitated these days, without my meds i would be essentially bedridden, would black out left & right, and cognitively can not read or write more than a paragraph or so at a time. i have tried not being on meds and for me it is much worse.

i am NOT saying that this isthe scenario for anyone/everyone else. and i also realize that my diagnosis is not longer POTS. but essentially my point is that we're all different. i have seen many of the top autonomic docs & for me, while balance and accepting, as well as conditioning, have been and continue to be vital in my life, for me meds have been necessary. and those i take do more good than harm.

there is no right or wrong about meds for the general dysautonomia population. there are too many other factors involved.

all the best,

:) melissa

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I have to take meds.

My bp has been recorded at 210/135 and I have topped out at 240 bpm with tachycardia.

I cannot function with these numbers.

I work full time and am raising three children. I would have stroked out a long time ago without my medication. Like Melissa said...everyone's circumstances are different. Acceptance and balance are great and I would give anything to be in a postion just to use these two alone.

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BGSU and Dona

I too used to be very active and was a fitness instructor at one point. Sometimes I think I am worse when I go to the gym. One of you mentioned hypoglycemia without diabetes. Can you please explain? I am having some blood sugar problems too.

Thank you

Susan

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