Anyone Else Scared To Take Meds?

[julieph85]

My doctor has been trying to get me to take midodrine for over a year. I'll admit it, i'm too scared. I've tried beta blockers and labetalol, both made me way worse. I also tried an H1 H2 regimine per Dr. Afrin. Those also made my dizziness way worse as well. I'm just so scared to take the midodrine. I'm afraid i'm going to either make myself worse, or mess with my heart. I've gotten really bad anxiety about my heart ever since i've had pots because i get episodes of very scary SVT. I'm always so afraid when i take a new drug it is going to make me get SVT again. Does anyone else feel this way? I wish i was more brave. I think every day that i could be not taking something that would help me. Then the other part of me says, the other drugs were supposed to help me too and made me worse...

[bebe127]

Julieph85,

I'm so sorry you are feeling this way. I too have anxiety over taking new meds. I was just talking about this the other day; my husband calls it self fulfilling prophecy (I like Murphy's Law, it just sounds better to me in fact, I think my middle name should be Murphy!). He always tries to keep the informational brochure away from me because he thinks that if I read about some whachadoo side effect, I will invariably get it. I was put on Norvasc a few years ago, for hypertension (before being dx. with POTS), I took it for a week and found myself in the ER. A few months later was dx. with POTS. I still don't know to this day if the Norvasc reduced my bp too much and that maybe is what started this whole rollercoaster for me. I've tried a few new meds over the years and had some bad luck with some and others no effect at all. I am now on a BB Metoprolol and Xanax. I have not had any problems with either and have been on them 2+ years now. I am not sure if the meds are what has helped me to get somewhat better or if it is just that I am used to this mess or if it is my attitude or even a combination. I am hopefully going to see a new EP soon and it scares me to death that he might prescribe something new and I'll have to get back on the rollercoaster.

I so know how you feel and it really stinks. I can't tell you whether to take it or not take it, but I will tell you that much of the med thing is trial and error and sometimes we have to go through it to see what will work. It's a "benefits outweigh the risk" senario. In my experience, if I take a new med, I pretty much know right away if it has a negative effect and I can either stop it immediately or at least call the dr. and ask for suggestions. I also don't start a new med until the weekend when my husband is home just in case.

I do hope you get to feeling better. In the words of Winnie the Pooh, "...you are braver than you believe, stronger than you seem, and smarter than you think."

Be well,

Bebe

[AussieOI]

Hello Julieph85,

I have recently starting taking Midodrine and it has been a very good drug for me. Perhaps give it a go if it helps great if it doesn't then move on and try something else. Each drug is different and while one may not help another might. Often it is a case of trying several drugs and seeing which one helps.

I don't mean to simply things and you must feel comfortable with your decision to take it for sure. The way I see it is that POTS symptoms can be so bad and if there is something that might help then why not try it - but that's just my opinion.

Aussie

[misstraci]

I'm scared to take drugs!!! and especially midodrine which multiple drs have tried giving me. I've just heard so much negative (although I've also heard lots of positive as well) but i'm scared because my blood pressure isn't particularly low and in fact lately its been kind of high. I don't want to mess with that. I'm even scared to take the lexapro that was prescribed over a month ago. I can associate with your anxieties in this respect. Whatever you decide, I hope it goes well, just wanted you to know that I feel the same way about taking stuff. I don't even like taking tylenol unless absolutely necessary.

[LMG]

Julie- I feel the exact same way. My endo and neuro want me to try midodrine but I feel very uncomfortable. I don't want bradychardia as I had bouts of that. Also, for me, I had an abrupt onset of POTS after taking a migraine med. I ended up in the ER and never got better, so I know that a drug can make me very ill. And I have never taken many meds in my life either.

I think if I could understand what midodrine might do for me, I would be more open to it. So maybe Aussie, you can tell us how it helped..with what symptoms, level of function etc. And did you have very low BP, fatigue etc.

I think most of us with POTS feel ill much of the time, that we are afraid to jeopardize what we have left.

[lejones1]

Yes absolutely! It's hard not to be scared after reacting badly to so many different things. I ended up in the ER one night last week after taking a simple vitamin supplement.

I think the worst part is that my family and boyfriend don't understand it. They think it's just lack of will to get better and say "well it won't kill you!". But as bad as I feel right now, at least I know what to expect...it's hard to take something knowing how much worse it might get.

Sometimes I does pay off though. I took Imitrex for the first time last week - I figured migraines are so bad, it couldn't be much worse, and amazingly, it worked without side effects. I guess that gave me some hope but I'm still afraid of daily meds.

Good luck if/when you start midodrine!

[Joann]

Totally understand your fear. I am afraid of trying new things and afraid of coming off current ones. I have some doctors that want me to stop my current and try something else. I have had bad reactions to new meds and the few times I have been even late on my current, it has not been good.

I guess, only we can decide if it is worth the risk. If we think the new medication could reallly help us or not. For me, I am currently waiting on some tests and some more doctors opinions. If we can figure out what I actually have wrong, then I will be more confident on trying other medications.

I wish you the best, I totally understand the fact that when you have felt sooo bad, you never want to do anything to make it happen again.

[HopeSprings]

Yes, after many bad reactions, I'm afraid too. Midodrine was no good for me, but nothing scary happened, just really exhausted and couldn't get off the couch the whole next day. I don't think this is a typical reaction though. When trying a new med, I always ask for the lowest possible dose, preferably pediatric and then cut that into little pieces (making sure it's safe to do so first) and just take a little. If nothing bad happens, I add a little more. If I feel bad from my little crumble, I can only imagine what the full pill would have done!

[dkd]

I've recently started taking midodrine (a really low dose though--5mg twice per day) and haven't noticed any bad side effects yet.

From what I know, it doesn't stay in your system very long, so even if you try it and have a bad side effect, it'll be out of your system soon. Just keep a check on your blood pressure and see how you do.

[dpeeps]

I don't like to try new medications. There never seems to be a dose small enough for me!! My body overreacts or it reacts completely opposite to what the drug is suppose to do. I totally understand where you are coming from.

[AussieOI]

Hi LMG,

I developed POTS/NMH last year primarily after a period of being very sick after a GB/Liver issue (which I am now recovered). Basically my symptoms were very bad last year and I tried Florinef which just gave me a headache. I had 2 months off work for the GB issue but went back to work and that's when I developed POTS.

I was very ill for about 4 months with it and could hardly function. I continued to work full time but could barely get through each day. I saw a neuro who incorrectly told me I just had to put up with it. Slowly though I started to improve (to be honest I have no explanation why). Anyway then I was 100% for about 3 months but then I had a blip this year for abt 4 weeks and felt bad but not as bad as last year. Then I went to a cardio who said I needed Midodrine.

My symptoms are more NMH than POTS ie low bp on standing (maybe around 90-100 - the top number) and a highish standing heart rate around 100. In the morning when I walk to work though it can get to about 130 as I am very unfit! My main symptoms were lightheadedness, fatigue, low bp and palpitations.

Anyway for me Midodrine is great because it just basically pushes all the blood up to my upper body, boosts my blood pressure and lowers my heart rate a bit. Often in the mornings I feel a bit off for an hour before work but if I have Midodrine as soon as I get to work I feel much better, alert etc. My blood pressure has now come up to around 110 which is much better.

Midodrine only stays in your body for 4 hours. I have quite strong opinions about the use of medications for POTS and I feel if someone needs medication then it is important to try medication and find something can help then you can try to get back to a 'normal life'. While not life threatening ligheadedness and dizziness can be very disabling and mean that you cannot go out, socialise properly etc I am now pretty good however often each morning I still feel a bit tired and funny for an hr or so and often if I go out socialising and have to stand for an hr or so I feel a bit odd!

I just reckon with these things give it a go, what's to loose? If it doesn't react well with you then you never need take it again, but at least you know and can then talk to your doctor about another type of medication.

Aussie

[Angela]

ugh. i hate my laptop. this is the second post i have had to retype. i always google meds and side effects, i'm sure you do too, but if you feel strongly against something definitely follow your instincts.

[Angela]

aren't you techincally catagorized as a HP? maybe I recall wrong!

[LMG]

Aussie oh- Thanks. I will revisit the idea of midodrine....I have some NMH too and it is the fatigue and nausea and lightheadedness and Migraines that keep me down.

You gave a great explanation of how it helped!

[jkoconne]

I use to be very scared with meds becasue I always had bad/sever reactions to medications. I got my liver enzyme pathways tested and found out i dont metabolize a lot of medication correctly. Now that i know this I feel more comfortable taking meds because doc know what is and isnt "safe" (from a metabolization point) for me to take. I still get anxiety when i take new medications and stay over night at my paretns house incase i dont feel good.

With all that said, I started taking midodrine in december and its been great for me. I got minor symptoms at first..tingling in my head and really exhausted when it wore off. Now, i dont get any symptoms. It helps me keep my hr down 10 bmp, helps the pooling in my legs SOO much and helps my energy when its effective.

I hope you figure out what is right for you! I wish you the best of luck!

[icesktr189]

Just remember midodrine is in and out really quick... like around 4 hours. Start at 2.5 mg because that is a very small dose. I am too VERY afraid of meds and it got so bad that I would give myself symptoms after I took one. Therapy has helped a lot. I am now forbidden from going on askapatient.com or looking up all the side effects before I take it. My therapist says that if I do experience something out of the ordinary, just to call the pharmacist and ask. Do NOT google! I have even sat in a hospital parking lot before just to calm me down. Good luck!

[AussieOI]

I also have the tingling scalp side effect sometimes but my cardiologist said that is one of the main side effects. I take 5mg once a day in the morning and if I am out in the evening sometimes I take another 5mg. I also had a concern that after a point in time I might not be able to wean myself off it however my cardio said that because it is in and out of your body so quickly there is no weaning off period.

Some days I don't take it at all. Remember also that just because you take a drug now doesn't mean you will always have to take it. However sometimes non - pharmalogical measures are not as effective as we would like them to be and medication is necessary even just to stabilize the symptoms a bit.

[issie]

Julie, are you still on plaquenil? Do you think it is still helping your RA? Did your high bp's get better and now they are trying to increase them. Why the midodrine? It wasn't a good one for me - but, I tend to have higher bp's. Mine are low with lying.

I think that most of us will try almost anything at least once. We are all so different and just because one person can't take something, that doesn't mean that it might not be the perfect thing for us. And, you would always wonder. Worst thing, is it won't work and will be a horrible experience. Best thing is, you will then know what your response is and if it works ---Yayyyy. If it doesn't then there is no more question and it goes on the DO NOT USE list. (But, for the record ---it was the worst thing I've tried. It affected me in a very emotional way and that lasted awhile.) I did find that the herb Butcher's Broom is midodrine light. Very similar response - just not as intense.

Issie

[ramakentesh]

I must admit im quite the opposite. After POTs came back again in 2011 I decided to try all the meds and see which ones helped and Im glad I did. In the past I had weird side effects to a few and that put me off, but I realised that with many meds you just have to give them a chance for your body to get used to them.

ive never found that any med I took or tried gave me long term problems or worsening of symptoms. In my experience anyway.

[ramakentesh]

For me it was at a BBQ when a member of my wife's family with a medical background said to me 'why would you choose to feel this way if you have never tried the meds to see if they make you feel better?' I couldnt answer that question.

[AussieOI]

I am like you Rama! When I found out about Midodrine I was so excited and couldn't get my hands on the stuff fast enough! Even though it is working for me I am always interested in hearing about new medications etc. I have tried Butchers broom and licorice and they are good but not as good as midodrine for me at least. I would be interested to know how strong Butchers broom is compared to Midodrine ie is it 5% as strong, or 50% as strong etc

[Hope]

I too am always afraid to try new medicine, so I go with 1/2 a pill first to see how I will react. I figure if I am going to react to it, it won't be as bad as taking the whole thing I take Midodrine, 2.5 mg tabs. I am prescribed 3 a day, but I take 1/2 of one tab in the morning and if I need it later another half. If I take a whole one, I will get chest pain. And I don't think it's my heart, I get a spot that swells like a knot and when I take the whole tablet it aggravates that spot.

[cyndi75rose]

Oh this post is exactly where I am right now. I just got prescribed florinef and Amitriptyline. Actually I got prescribed them on Monday. And I am scared to death to take them. I have so many reactions to medicines that I just don't want to have one make me pass out. I will do anything to avoid that situation. My doctor gets very upset with me cause I will not do what they want me to do. I am scared to take anything that messes with my heart. I am just a horrible patient when it comes to that stuff. I am going to try them though. This weekend. When I don't have to work and if I get sick I can be at home to deal with it.

[Guest Alex]

I've tried a lot of different meds in the past 18 mo and most of them only made me feel worse. Right now I'm reluctant to even try vitamins or supplements.

Alex

[Hope]

Alex,

Wow, you're not kidding! I thought I was safe taking a cranberry supplement. It seemed so harmless, not like a prescription drug that I'm usually terrified of. Don't you know I got a reaction to it. I was sitting at my computer and started sweating and getting shaky. I got in the shower and it just got worse, bad shaking. It went on for about 2 hours. I drank a ton of water to try to wash it through quicker, and just sat on the couch with a hot pad until it subsided. I won't try that again!