Fear of trying new medications

[danelle]

I was just wondering if anyone is as scared(more like totally terrified) to try new medications? I have been given some prescriptions for Midodrine, Florinef, Wellbutrin but I am too afraid to try them. I do feel absolutely miserable and virtually unfunctional but I have had such bad experiences with meds in the past that I just can't make myself try them.

I know you all are thinking "but if you don't try them, how will you ever know" and that IS true and I DO understand that. I just have this overwhelming fear of something bad happening to me if I take them (in particular SVT, irregular HR, stroke, anaphylaxis, and the list goes on and on and on......)

Now that Dr Grubb is "iffy" about whether or not I may have a electrical problem as well as POTS(Not instead of), it makes me even more scared. I have daily irregularities in my HR and daily tachy now (and that is with NO caffeine, smoking, alcohol, etc) that I just know that any new med will make them worse and then I TOTALLY freak out. and I do mean panic in the worst extreme fashion.

Even if I try and take a few sips of my husband's coke/pepsi, if i get more than a few the palpitations start. And I am very sensitive to meds anyway.

I have come to realize that everything in life now terrifies me because of this POTS thing and whatever else might be going on. I hate to say that I am not exaggerating. Mortified might be a better word.

Anone else like this or anyone been able to overcome this? IF so, how? I really need some psychological help in this matter but can't even afford my copay at this point.

Being a nurse, I look up EVERY side effect to any med given and always think the worst, just don't know what to do. I just don't feel safe anywhere, anytime.

Danelle

[dizzy]

Hi Danelle,

I don't like trying new meds either. When I start something new I usually have someone stay with me for the first few days in case I would have a reaction. I will start when my husband is off work or I will go stay with my parents or other relative when he is not home. I understand your fear. It helps just to know that someone is with you just in case you have a reaction or unwanted side effect.

Best wishes,

Susan

[michiganjan]

Dar Danielle,

I am afraid of new meds, too, but I am not as fearful as I once was and I can try new meds now. What has made a difference is taking it low and slow. By that I mean taking an extremely low dose and raising it very slowly. For example I recently tried lexapro and took 1/8 of a pill for a week before going to 1/4. )I ended up stopping the drug due to an undesirable side effect,--but wasn't a disaster because I went so slow and stopped as soon as it became evident.)

I know that on Wellbutrin the lowest dose is 100 mg. Unfortunately, this is a coated pill and you should never cut or split coated pills. The Wellburtin you will have to try with a whole pill of the lowest dose. (If it helps any, I used to take Wellbutrin and I didn't have any problems with the 100mg a day dose.) You could start every other day with the Wellbutrin until you feel comfortable taking it every day.

Just find out with any give med if it is okay to split it. A pharmacist can tell you this. Pills that are scored are usually okay to cut, as the scoring means it can be divided. You can buy a pill spliter in any drugstore.

If you go very very low and very very slow you can tolerate things better, and you can back out before a side effect is too much to handle.

Good luck and let us know how it goes.

Michigan Jan

[sally]

Hi Danelle,

I think when a person works in the health field, it's a common thing to be more nervous about medications and medical procedures....it's because you know what can happen more than the average person. (remember that old saying that doctors make the worst patients).

In our family we use Midodrine everyday and haven't noticed any real side effects that would keep us from using it. The only thing I noticed is a tingling feeling (like chills) that last for about a half hour after it gets into your system due to the autonomic system adjusting also a tiny bit of spaciness that tends to occur but hey who could tell the difference from the regular spaciness that happens on a everyday basis, right? The chills went away totally after using Midodrine for more than a few days.

My daughter took Florinef and she noticed it made her nauseous for some reason and could not take it.

Anyway, it's been a big help for us and we also have the tachy that occurs most of the time...I can be standing perfectly still and have a heartrate up to 139, especially in the AM when my blood pressure is lower. My normal heartrate is about 80 lying down. I've noticed that when I take the midodrine, my heart rate is lowered as well.

Good luck and hope you feel better soonl

[Michelle Sawicki]

Hi Danelle,

I have a friend who is a nurse who goes through the same thing when trying new medication. If you'd like, I can give you her phone # if you email me: Michelle@potsplace.com

I usually start any new medication with a very low dose. If it's in capsule form I will pour some out. If it is a pill I will check with a pharmacist to see if I can cut it into a smaller dose.

I also don't start any new medication unless someone is home with me if I were to have a negative reaction.

It also helps to take it on a day that I am busy doing something so I am not preoccupied with every little palpitation, etc. That way I am not focusing on every little symptom and thinking it is a reaction to the medication. It is so easy to blame every little symptom on a new medication when you are taking it for the first time.

Maybe the meds will help, maybe they won't, but you'll never know until you try them. I always tried to look at it in the sense that this new little pill in my hand might be my ticket to a better quality life, and that I at least deserved a chance at that.

Best wishes,

Michelle

[ethansmom]

I agree that it's good to take a smaller dose to start with, and work your way up to the recommended dose- that way, if there is a reaction, it won't be so strong. I know it stinks to be so sensitive to all these meds that are supposed to help, but you have to keep plugging along, and maybe you'll find one that works for you.

I was getting discouraged becaused I couldn't tolerate my beta blocker or Florinef, let alone the combination of them. Come to find out, I can only take 0.025 mg of Florinef and it works much better- any higher than that and I'm walking around in a fog half asleep. And Midodrine- almost everyone can tolerate that as well, it has very mild side effects that usually go away within a few weeks.

Anyhow, I understand not wanting to try them, but how else will you ever know? We are here to answer your questions and support you

[calypso]

Danelle,

Are you taking anything or talking to anyone (i.e., therapist) about your panic issues? I am more worried about you having panic attacks/anxiety than about you taking a new med. I have had panic disorder since age 18 and it was completely controlled with meds/therapy about six months after diagnosis, but then when I got POTS it came back. I think you shouldn't treat these episodes as part of POTS, but rather as a separate thing. Maybe once you get the anxiety under control, you will at least start to mentally feel better.

Please don't take this advice the wrong way. I just picture you sitting there looking things up like side effects of meds and worrying yourself to death. And keep things in perspective; I have been told SVT is a benign condition in the vast majority of cases. You have had more EKGs than most people ever will have in a lifetime. The younger people who have cardiac arrythmias and such often don't even know anything is wrong, and in many cases if they would have had an EKG it could have been prevented. You have had these tests, so you are probably at a much lesser risk. If Dr. Grubb was worried that you would have an adverse reaction, he would have warned you or not prescribed the medication. Don't forget that doctors have liability to worry about.

I am not usually in favor of taking more meds, but if your anxiety isn't under control without them, that's doing your body probably more harm than any meds you take.

Take care,

Amy

[danelle]

It sounds like baby steps and baby doses are something I should atleast try. I do sometimes wish I didn't have any medical knowledge so I wouldn't know to be afraid

Amy,

I'm not offended at all about what you said, what you said is SO true of me. I too have had panic attacks/chronic anxiety since the age of 18-not sure if it were the POTS that caused them or my mother's death cause they both happened right after the birth of my first child at 18(I was just a baby!!!).

I do know that I have MAJOR issues with this and I really wish I could afford to see a counselor but I can't right now. I am on clonazepam daily which I guess helps some but I still stay scared all the time. I am really sick of living life in fear of everything. I can consume your every thought, and you get no where but sicker when you do it anyway. It is a habit that I have had for so long that I don't know how to break it.

I do know that before POTS, I was a daredevil. I loved any kind of excitement. Would take on any dare, especially the physical ones. I loved roller coasters, scary movies, all kinds of sports, just a very very active person. Nothing frightened me. I'm just not sure where that person has gone Would like to find that part of myself back, even if I know I can't do any of the physical stuff again, just the attitude and zest for life and adventure!!!

Thanks for everyone's support, once again. I honestly couldn't make it through this stuff without you guys.

If I ever win the lottery-POTS will be on tv everywhere, education galore and it will be as well known AND understood as heart attacks!!!

Everyone send me the winning numbers telepathically(sp?) and we'll all be "rich" with help

Many hugs and thankfulness,

danelle

[Guest Julia59]

I really think POTS has a big connection with "panic attacks". But I also believe is does have to be treated as a seperate symptom.

I have had them a long time as well. Before is was the only symptom of POTS that I had------that is when MVP was diagnosed. They said the tachycardia was not from the MVP, however. They tried a beta blocker back then--- in the 80s----proved too strong then. I did not take any meds until 1990, which is when I had another spell after being exposed to toxins. This time I had dizziness along with the usual "panic attack" symptoms. I also had balance issues.

I took 60mg inderal LA back then and tapered off to a lower dose as my symptoms went away. Then in Dec. 2000 I really crashed and the panic attacks were at their worst. POTS was finally diagnosed in June 2001. MVP was later rule out----either I didn't have MVP---or is was so small in did not show up on the echo.

Now i'm on the wellbutrin 100mg SR once a day. It controlled what I now call hyper adrengic attacks. I like to leave "panic attacks" out of the picture. Our systems malfunction and the sympathetic nervous system goes into the flight of fight response---for what ever reason. We can be just sitting there minding our own business----then BANG out of no where our body is running a marathon---only were not running. I really think more research needs to go into this area---as this is one of the most life altering parts of POTS----or other ANS disorders---i.e. -> PAF, NCS, and so on.

Fortunately Wellbutrin worked for mine------eaither they just don't happen, or I just don't care if it does. Not caring---meaning I don't feel the adreanaline rush that usually comes with the tachycardia---and the tachycardia is lower then usual-----if you can call it tachycardia-----which is more like high normal---90s. It's like the attacks try to happen---but they can't. I had no side affects off the Wellbutrin except weight gain. Not a horrible amount of weight gain. I just need to accept the 20 extra pounds or work harder to get it off. It's hard with low exercise tolerance. Better to feel better I guess.

I'm glad I can tolerate the wellbutrin along with my propranolol and synthroid. I am very sensitive to meds also----but that group of meds works well for me. I'm not feeling great, but I can funtion a lot better without those hyper adrengic attacks.

Julie :0)

[Guest Julia59]

Note-----> I also think there is nothing wrong with going to a psychologist to discuss the hyper adrengic issues. Going through those can really cause a lot of havoc----and sadness in our lives. I know it controlled mine---and the things I wasn't afraid to do before----I was afriad to do after the attacks started---and now sometimes.

There are still things I don't do fearing that an attack will happen. I'm doing much better in that area. It's mostly psychological in nature now that my meds control my excess adreanaline. Even though they are controlled, I never forget how they were---which leaves a little excess baggage in the psychological department.

Fortunately the psychologist I went to is a friend of Dr. Grubb's and knows all about dysautonomia----and what is does to our bodies. I've come a long way, and I know these attacks are natures way of telling us that something is out of balance. Although I fear them, I don't fear them as much, because I know they won't kill you. They can be a truly humbling experience......................made ME take a second look at my life.

Julie :0)

[RunnerGirl]

Julie:

Thanks for those two posts above. Our cases sound quite similar. I, too, have hyper beta-adrenergic spells doctors first told me were panic attacks. I insisted they were physiological episodes, NOT triggered by any emotional upset or other psychiatric stress. Amazingly enough, it was the psychiatrist I sought in desperation who finally convinced the medical docs that I was not presenting with panic attacks. He was the one who got the ball rolling on having me worked up for pheochromocytoma (which, thankfully, it turns out I do not have) and other rare disorders that present with symptoms of tachy, bp spikes, anxiety, etc.

I've since been given a variety of theoretical diagnoses - mild IST, hyper beta-adrenergic syndrome, pseudopheochromocytoma, and, of course, anxiety disorder - not otherwise specified. My EP says I simply have an overly sensative autonomic nervous system, or a hypersensitivity to adrenaline. Fortunately, my symptoms wax and wane and I have more good days than bad. I've run two marathons this year, in fact, so I'm counting my blessing - particularly when I read of others who are so ill they are unable to work. Still, I so relate to the fear that you describe - worry about when you'll have another "attack." I went through a period where I was afraid to fly - not because I have aviophobia, but because I didn't want my heart to 'whack out' at 35,000 feet!

Glad you found the right combination of meds to help. I'm still managing med free, but I do have my scripts for Lexapro and Kerlone filled if I go through a rough period again.

Best to everyone here.

RunnerGirl