At What Point Do You Stop Your Meds???

[Monstrosity]

Ever since I was put on Propanalol I've been afraid of meds. Granted I was ramped up too quickly on it. Now I seem to want to give up quickly do to the side effects...

I was on Nanolol recently and due to a weird sensation and fatigue I stopped taking it.

Then before that I took 1/2 of Effexor it gave me jerks and tremors and left me on the couch the entire next day...

Friday I started Zoloft but I notice my heart rate has been high and I'm getting bad Acid Reflux. Granted its nothing like the others but I'm ready to quit it now. Where do you draw the line??? Everyone around me says suck it up and push through but WE all know how hard the trial and error can be for our meds...

[Dizzysillyak]

I get bad reactions to most meds so I only take them as a last resort and on an as needed basis.

Some people can't handle meds. You may be one of those. I use diet and a few supplements

for my symptoms. The upside being that I don't have to worry about side effects they know about now and those

they don't know about yet. Tc .. D

[Chaos]

Are you taking low doses of meds? Many of us don't tolerate or need much of a dose of anything.

Personally I try to stay on things long enough to see if it might be helpful, but I need to feel that there's enough benefit to make it worth suffering thru the side effects. And, if the side effects are so incapacitating that I can't find any benefits, I stop the meds. For example, propanaolol- it makes me tired, but keeps my heart from pounding visibly thru my chest wall, stops my hands shaking and lowers my heart rate so I put up with the fatigue because the other side effects are more disabling to me.

The other reason I've stayed on meds (has only really happened once) was because of pressure from my family members. Ultimately the med may have helped me some, but I still got off it after a few months because I wasn't convinced it was worth the continued side effects.

[POTLUCK]

I experienced the opposite with Propranolol, where without very high dose I was on earlier ( before diagnosis ) my HR would not go below 100. I still wonder if being on Propranolol LA 80 mg twice daily for 20 years made me used to it and unable to taper off and this is the cause of my POTS - like an addiction to Propranolol.

Anyways, does the Zoloft measurably affect your HR? That does not sound good. Other than saying contact your doctor of course, what is the dose, could you cut it with docs permission by phone. ( meaning drug store pill cutter ) SSRI's common side effects are stomach type side effects. Something called Akathesia is not as common but very uncomfortable side effect. I do not know if any of these facts are helpful.

[POTLUCK]

I should have definately noted that the advice of those saying "suck it up" does not necesarily sound like the best, but you seemed to realize that. Also that side effects such as "stomach" (gastrointestinal) are usually dose dependent, meaning more with more dose, in SSRI. ( Not sure if I just went past what I am allowed, as far as not advice giving, but if so I guess will be edited. I am trying not to. )

[corina]

POTLUCK,

I've been on a bb for over 10 years and tapering off of it was pretty difficult. My cardio told me that taking a bb (esp. for a loooong time) makes your body to make more of something that I forgot (so sorry but maybe you know or are able to find out) causes trouble when you try to get off of it. He told me it could take about 4 months to a year for the body to adjust. I think I'm almost there. He said to listen to my body and not let hr get up too much (not over 90-100 in my case). Hope this helps!

I stopped the bb because I started Octreotide. In the end it turned out that my hr came up again on standing which is now fixed by taking an SSRI.

I'm a "push myself" person but couldn't tolerate florinef and really didn't want to sit things out (luckily my doc thought so too!). The SSRI needed some pushing as well but I'm glad I did that as together with octreotide it's what has worked best for me.

[issie]

I know with me and meds - it doesn't take me long to know what my body will do with it. If you are really tuned into your body - you should be able to tell pretty quickly whether or not it will help or not. With me, if a person can take one of something - I can only take 1/4. Super sensitive to meds and have to really start out with super low doses and that will affect me pretty strongly. The med I'm taking right now - initially was prescribed at too high a dose and I couldn't tolerate it - but, at 1/4 pill - it's working good. It has some side effects - but, the benefits exceed the side effects.

Issie

[targs66]

I'm another one of the "low dose" people. I have found that some things that can make me feel awful at the recommended dose can be helpful in a tiny dose. For example, a little crumb(!) of Benadryl (diphenhydramine) helps me sleep but if I took even 1/2 pill I would feel absolutely rotten.

[brethor9]

I am a tiny dose person also likely due to the mast cell stuff and POTS....everything I take is below childrens dose....my son takes a higher dose of his beta blocker than I do lol! (and he is only 9)...my motto is start slow and stay low....it works for me......my pharmacist told me recently patients like us literally just need a whiff of meds to be helpful and sometimes that can even be too much...all trial and error I guess

[roxie]

I know, I deal with fear of meds too. I'm REALLY dealing with it right now & wondered if i was the only one.

Usually I am slow & low. My new dr has pushed me a little more and after the initial bad days I've done ok but he wants me on Midodrine. I previously had a bad experience so this time I'm afraid. I kelp struggling with do I or don't I retry it?

I have an appointment this week so we'll see where that goes. My thoughts on it change daily. Like today I'm saying is fear worth my body not getting stronger? Tomorrow I'll probably say I can get stronger without it.....I just don't know?

You aren't alone in this one!

[mully2014]

Unless it is an allergic reaction it takes my cardiologist a super long time to get me off a med. I normally suffer way too long through things I shouldn't have to and I wish I didn't have to. Make sure you don't suffer too much by staying on a med it isn't helpful then either!

[POTLUCK]

Corina-thanks, it may help me. As soon as I was put back on Propranolol I found my body needed more and more rapidly, right back to that level I was on for 20 years, or my HR stayed too high. But some people on this forum seem to be lowering their HR via exercise, and I am thinking maybe I could taper the Propranolol while increasing the exercise. From Inderal LA 80 BID down to LA 60 BID I can do this, but below that level they do not make a long acting form. These meds ( B-blockers ) wear off quickly so the short acting form causes my HR to bounce all over. It is very distressing. I think my cardio ( he treats the POTS ) would be willing to let me try this approach.

I do not want to rock the boat with anything much as returning to work very soon, so need to be baseline functional. But exercise, especialy at a moderate HR, rather than high HR, and building up what I can do may be good.

[corina]

PotLuck,

in the end I found out that my hr came back up on standing again (so not exercise related). I now keep it in control by taking an SSRI.

Wishing you all the best and hope exercizing will work for you, it's so much fun!!!

[jpjd59]

This is a question my daughter struggled with as well.

After trying numerous meds (beta blockers, SSRIs, SNRIs, calcium channel blocker) she decided that the side effects were making her feel worse and they were not worth taking. Every time she tried a new med and had a side effect it seemed to set her back even more on her road to POTS recovery. As far as medication, she is now only taking Vitamin B12, Vitamin D and magnesium. She also started an exercise program last week through a cardiac rehab facility (so that they can monitor her carefully while she gets used to exercising). Hopefully we will see some improvement within a few months.

I hope you get the med situation taken care of. I know how frustrating this is!!!!

[bellgirl]

Everyone is different....but to Potluck, I take a long acting beta blocker (12 hour half life), that works great for me. It is cardioselective, and works on the vessels and baroreceptors. Bystolic is relatively new, doesn't have a generic yet, so It's kind of expensive even with good insurance. I also had high blood pressure before all of this began, so I'm a rare bird, who is also on Losartan.

Monstrosity, you need to listen to your own body. I was on atenolol before the Bystolic, and it made me so lethargic, but I stayed on it a month. My heart rate was 50, and I hardly had a blood pressure to speak of, and I couldn't breathe!! There are many beta blockers...you can try a new one with your doctor's orders. It has made a world of difference for me. I only get tachy on occasion, but most of the time my HR is in the 70's. I am so much better than I was...not as dizzy or hyper anymore, which wore me out! Haven't been on the other meds you are mentioning, so I can't relate there...Hope you find what's best for you!!

[Monstrosity]

I think I'm going to go drug free for now.

[mully2014]

It seems like my body is retailiating even more now...I used to be able to take this beta blocker but now I have such severe reactions from it and I don't get relief. My parents are really good about not having me take something that has bad side effects but my doctor typically has me keep staying on it even though it makes me even more miserable than I am (which is sometimes saying a lot).