Is Anyone Medication Free??

[Sue]

I called Dr. Grubb Friday morning and left the nurse a message for him, I wasn't taking Lexapro anymore. He did call me back, I have an apt. Tuesday, so we are back on the Celexa for a few days.

Well today is day two, something is going on definately for the better. It is so hard to disifer if what you are feeling is because of the medication you are on or is it a symptom. Since I started on the Lexapro, along with the weight gain, I have been not my usual happy self. I don't know if it was me or the med but since I have quit taking it, I feel a little weight lifted off my shoulders. I am thinking it is too soon to really know why this is, but hope it continues. My daughter confided in me this morning after I told her that, that I have actually been really mean lately and she thought I was mad at her (wish she would have told me sooner)...

So many of these medications have side effects. How are we to know what is a side effect or a symptom...

Is anyone out there handling this MEDICATION FREE???? I would really like to know that. and if you are what are you doing for yourself???

Hope everyone is having a beautiful day!!

Sue

[MightyMouse]

Not sure if anyone else is med free, but I'm sure not. However, none of my current meds are for my ANS problems directly.

Indirectly...probably...I take a snootful of drugs for all my GI motility problems, reflux etc... and right now 6 or 7 meds for the allergies and asthma. I came down with bronchitis a few weeks back and haven't been able to shake the rattling out of me yet. We just bumped a bunch of stuff up to higher doses to see if that helps me heal (advair now at 250/50 and using the nebulizer at least 2 x a day instead of the rescue inhaler which is a much lower albuterol dose).

I'm no longer on Celexa...as of last week. Being off of it, I haven''t see any noticeable difference as of this point -- so I'm thinking that for me, it was just one extra thing I had to remember to do every day...and it cost me $$ and didn't seem to be working.

Nina

[EarthMother]

Sue,

I find for me that different things work for me at different times. I tend to go through periods when I take some meds and then as I improve I am able to stay off for long periods of time. In general I don't do so well on meds so I take them only when I have to.

I've been taking ddavp since December and it's helping me keep my fluid level high. I suspect I'll be able to taper off sometime over the summer.

My doctors work closely with me with any changes and we agree in advance on any new plans.

Good luck on your journey.

EM

[Sak]

I've managed to control most of the autonomic symptoms with water, salt and diet changes. But I take a stimulant for the fatigue and brain fog, which are treatment resistant; without it, I'd be physically ok, but mentally crippled.

[Deb]

Hi Nina,

I have the allergies and asthma, too. I've been on the 250/50 Advair inhaler for a year now, and I can honestly say that my asthma has never been better. My chest never feels tight anymore.

I did have bronchitis this past December. The first time in a long time. I believe I caught it in the waiting room in the ER. I lived on my albuterol inhaler, and I did take a short three day course of prednisone. The cough and chest tightness lasted awhile, but I was able to stop using the albuterol after about a week. I also used a cool mist humidifier. It seems to help with the breathing. I also used warm towels on my chest. I was completely cleared up a month later.

Hope you feel better, soon. Deb

P.S. I am not POTS medicine free, but I hope to be one day.

[geneva]

Last Oct I went of Atenolol which we had been tapering down every 6 months or so. With strict monitoring of salt and fluids my tachy. is not as severe as onset. I wear a continuous heart rate monitor so I am able to detect problems quickly and react. The HRM gives me a sense of freedom. Also 2 months ago I discussed with my doctor going off of Florinef, which over a long time, I was down to 1/2 tablet a day. I don't know if I can stay off it for the long run but I just wanted my body to have a break from the meds. Remarkably, I discovered that overall I feel BETTER without those drugs! I lost track of which symptoms were POTS related and which non-ANS. Also pyschologically it is a boost.

I do still take Ativan in very small dosages because any stimulation activates my symptoms but I don't take it everyday. I have GI and allergy meds that I take as needed but the less meds I can get by with the better because I react to everything it seems.

Good luck working out the best solution for you.

[Guest tearose]

Yes, I'm medication free for my dysautonomia. I take only hormone replacement due to surgical menopause. I do manage my dysautonomia with a lot of behavior modifications! My "treatment plan" consists of: compression pantyhose, compression body garment, heart monitor set at a high of 140 and a low of 40 bpm, and good levels but not too much of water, salt and electrolytes. I take tylenol for pain when I don't mind the side effects of tiredness and I take advil when I don't want to feel tired and my stomach can handle it. I graze throughout the day and avoid large meals. I take a good daily vitamin and sometimes calcium. I eat high fibre every day. I use an "energy point" scale to help myself not overspend my limited/fluctuations in energy and still live an active life. I exercise with extreme awareness that less is more and wearing ankle weights for a half hour may be the best exercise for me on one day and another I may be able to walk on a treadmill. I rest when I need and am unable to hold a job. I use a seat/cane so when I'm out and about I can sit down on my chair instead of on the floor if I begin to feel syncopal. I have just spent the last week shopping for a new place to live so I won't have to use stairs anymore and thus also save my energy. I find that meditation/prayer and breathing exercises are restorative. For me, this is the best my medical team and I can do for me. I have given some thought to neurontin because of increasing neuropathies however, my pain is periodic and I'm hoping it goes away soon. My recent life stressors have increased and first I want to see if I can reduce some of these before starting anything that is a long term medication. I also recently showed lack of restorative sleep and until I understand what this fully means, I don't want to take a medication that will alter my already funky body chemistry. Oh, it has also been very positive to be able to have tihis forum to turn to when I need to know there are others "out there" who are surviving this challenge too! Take care, tearose

[CJMANN1]

I AM MEDICATION FREE. MY BODY DOES NOT HANDLE ANY MEDICATIONS WELL. I USE TO TAKE FLORENIF, BUT I WENT OFF IT ON MY OWN. MY DOCTOR TOLD ME NOT TO, BUT I COULDN'T HANDLE WHAT IT WAS DOING TO MY BODY ANYMORE. SO......I DECIDED THAT I WOULD TRY WHAT I COULD FOR MYSELF.

I TAKE A VERY GOOD MULTIVITAMIN AND SUPPLEMENTS

I TRY TO EXERCISE SOME...EVEN A LITTLE

I USE MAGNETS AND THEY HAVE HELPED ME THE MOST!

I TRY TO CUT MY CARBS AND SATURATED FATS BACK BUT NOT TO STARVE MYSELF.

I HAVE A VERY HIGH SALT AND WATER INTAKE

I TRY TO PAY CLOSE ATTENTION TO WHAT MY BODY IS TELLING ME.......IF I HAVE A CRAVING FOR SOMETHING I TRY TO FIGURE OUT WHAT AND WHY MY BODY IS CRAVING IT. SOMETIMES I DON'T TAKE IN ENOUGH SALT OR WATER AND I CRAVE POTATO CHIPS ETC.... INSTEAD OF EATING THE CHIPS I WILL EAT A BUNCH OF SALT AND DRINK 2 GLASSES OF WATER. MOST OF THE TIME IF YOUR BODY GOES THROUGH REALLY BAD CRAVINGS YOUR BODY IS TRYING TO TELL YOU SOMETHING.

AND I GET LOTS AND LOTS OF REST EVEN IF THAT MEANS SITTING OR LAYING DOWN FOR 15 MINUTES TO AN HOUR WHEN I GET HOME FROM WORK.

I WOULD REALLY SAY LISTEN TO YOUR BODY AND PAY CLOSE ATTENTION TO WHAT YOUR BODY IS TRYING TO TELL YOU. AND LIKE I SAID BEFORE THE MAGNETS HAVE BEEN WONDERFUL FOR ME.

BUT YES......I BELIEVE THAT THERE IS A WAY TO BE MED FREE.

[Merrill]

Hi Sue. I've got POTS and I'm medication free too. I do like tearose (mostly) -- I wear compression hose (thigh high), and have a high salt and fluid diet. I drink 10-20 oz of gatorade a day in addition to all the water, and I've cut my caffeine down to almost nothing--whatever I get in a little chocolate. These things have helped to lower my heart rate some (before making these adaptations, it was up over 150 while awake). I also try to eat well and take a multivitamin. Sleep is not always restorative and I wake many times during the night. Occasionally I'll take 1/2 a tylenol pm if I don't fall alseep in 2 hours; it takes the edge off and I usually stay down the rest of the night--and I'm not wrecked in the am. I think lowering my heart rate has helped with the exercise intolerance a little. (I don't try to do more than attend a once-a-week gentle/slow yoga class, though, and walk to and from the bathroom at work a few times a day--it's far!) And I discovered a product that can help with the heat intolerance: a cooling neck wrap. It worked great when I was in a very warm place for a few days last week.

Best,

m

[morgan617]

i take only three meds but not for oi. one is for malignant htn, and one for meneirers, and one for hormones. probably the most important if you ask family but am so sensitive to everything, just don't like to take meds. have tried about 1000 or so but have ended up in hospital from reactions, so don't as a rule mess with them. morgan

[tinksflight]

I am also medication free...I down the water..3 liters a day...Crave and down alot of salt also.. I use celtic sea salt because it still has all of it's properties unlike reg. table salt.I also use licorice root , one tab in pm.& a multi vitamin, and when my POTS is shifting into high speed I have Klonopin...I haven't used it but twice in the past 8 mos. Sugars seem to cause those inner tremours so I try to avoid them , therefore I don't drink much gatorade..

I was taking florinef along w/ zoloft and the klonopin when at my worst...I have had POTS diag. for 1 1/2 yrs. now and have been doing better with out medications...However..I go through alot of bad days before having good ones and sometimes wish I had something to pick me up..Yet, I am terrified of all medications...Have been talking to my Dr. about taking something for the pooling in my lower limbs...Not too sure what to do but I do plan on staying "as med free as I can" for as long as I can..

[Merrill]

tinksflight, I don't think there's a drug specific for the blood pooling in your legs, but you sure can get relief by wearing compression hose! Get your doctor to write a prescription for em and get em at a medical supply store--they'll be covered by your insurance that way. (See other posts on this topic... most people with pots wear them.) Maybe you're already doing this, but since you didn't mention it on your post, I thought I'd make the suggestion.

Cheers,

merrill

[Alexander]

I do not take any drugs for my PoTS. That is because I am very sensitive to drugs. The doctor has prescribed Florinef, Midodrine and a SSRI. Of these I have tried only the SSRI, but only for a while as I could not handle the side effects. Generally, although I have symptoms that are disturbing, my ligestyle is still rewarding and I can do most things even if that means that I will have to put extra effort compared to "normal" people to achieve them. I thank God that I do not have to take meds, and pray that my health does not deteriorate. Best of luck to all!!