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Needed some support


Poohbear
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I know many of you can relate. I'm feeling frustrated and just needed to vent.

I tried a new med and it worked okay for lowering my heart rate but I ended up being allergic to it.

I now have a new med to try which wasn't our first choice of meds this go round because it made me incredibly groggy during the med trial at Vandy & I didn't have as good of a heart rate response to it. I've tried dozens and dozens of meds and combo's of meds and I get frustrated with the process.

This probably sounds horrible but I got the new med last night and I decided to wait until Friday to start it. I am so sick of being sick so much of the time and every holiday. I have a couple coming over for dinner (I'm keeping it simple and light) and I just want to have one good day. I know if I take the medicine today or tomorrow I would have to cancel the dinner. Am I wrong for wanting the "social day" over starting the new med right away? I feel like if I ever explain something of this nature to my cardiologist that he looks at me as if I'm being difficult or non-compliant. That really is not the case.

I'm really frustrated by trying to get a Dr to understand that meds don't always make your quality of life better and sometimes I opt for the quality of life and delay the meds.

How do I get people to understand meds vs. total quality of life issues? Or am I wrong and should I be focusing on taking the medication and adjusting to the fact that maybe the med will keep my heart and BP healthier (thus maybe prolonging my life) and settle for a longer life over a more satisfied life?

Thanks for listening!!!

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That's a tough one. My hubby always said well isn't it worth the groggy or dopey feeling if it keeps your heart rate down? I usually say, it's a toss up, who wants to go around in a total fog all day or feel like you can't even get up enough energy to get up. I tried toprol, it is possible that I did not take enough, I undermedicated and I had tachy sitting, standing and moving so I went back to atenelol. Even that one, it can keep my hr down a bit but when it starts to wear off I can't get another dose in quick enough. If I take to much I feel dopey and drag myself around.

I agree with wanting to have at least one functional day, I have 15 people coming for turkey day, and after yesterdays tachy bout I just want to have a semi-decent day. Do I take more med to hopefully squash a flare up or take my chances and stick to a tiny dose?

Personally, depending upon how I felt, I would wait till Friday.(I am personally going to try Lexapro. I am scared to death of trying but I figure the best day would be Fri.) Just in case you don't feel right on it, you won't have others around, start to feel bad that you don't feel well and worry about what someone else is thinking.

If you think you will have a better day w/o starting the new med, then I say do what you think is right. Push some extra fluids tonight, rest when you can tom.,sit when you can too. Hope you have a great Turkey day and let us know what you decided to do and how it all went. :)

BTW, what med did you take that you were allergic too and if you don't mind me asking what kind of reaction did you have?

Edited by mom4cem
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Poohbear,

I totally empathize with your post. You are definitely entitled to enjoy your holiday. I think most doctors don't understand what we go through emotionally each time that we make a change to our meds. On the one hand we are optimistic that things will get better; on the other hand, we are afraid of having a bad reaction. Unfortunately with us the bad reactions are different than the reactions that "normal" people have, and they seem to happen more often than the improvements. I think it's important to keep our doctors in the loop, but I don't think you need to explain yourself any more than you already have.

I have been suggested new meds and opted not to take them, or to wait a few MONTHS to try them because I didn't want to take the chance of having a bad reaction. I have done the same thing when I have been asked to wean off medications. I feel like sometimes my doctors are trying to rush me and I just need to do things in my own time. I know my body, and when I have tried to follow the doctors' schedule, it has sometimes resulted in total disaster. It is important to listen to your inner voice with these things. Because POTS is a long-term illness, and I don't think a few days or even a few months make a big difference in the grand scheme of things for most POTS meds.

I just posted about birth control pills. I actually got the prescription a couple of weeks ago and told my dr I was going to wait until January to try them because of Thanksgiving and X-mas. My Ob/Gyn thought I was crazy, but my therapist supported me and said it was the smart thing to do. Because she knows what I have gone through with past med adjustments. But then I ended up getting my period later than expected so now I am able to start it right after Thanksgiving. We will see how that goes...

Anyway, I think you are smart to wait a day. I hope the med works and that you have a great Thanksgiving!

-RT

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I really feel waiting till Friday is a good idea. Enjoy what you can. I personally would take a better quality of life than a longer life. My husband and I were just discussing this today seeing I'm trying a new med topamax that is completely draining me. I'd rather deal with my symptoms and still have the ability to stay strong than be on a med that isn't helping and adding side effects to my list of complaints.

It's your body and life so don't let the doctors make you feel your difficult because it's not being difficult, it's wanting to feel good.

Good luck and I hope you have a wonderful evening with friends

Dayna

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Pooh,

If you feel better without the meds, why take them? My doctors originally tried me on all sorts of meds, but we eventually came to the conclusion that I was most functional without the medication, despite the tachycardia.

I'm just wondering what benefits you're getting from something that makes you feel sicker than without it.

I do hope you have a wonderful thanksgiving, eat lots and enjoy yourself.

Cheers,

Lauren

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Guest Finrussak

I second (third? fourth?) all of the others. I have many times timed the start of new meds around many variables. ultimately it is YOUR body and only you can detrmine what is "quality of life". many Drs call it non-compliance because their egos get bruised if you dont take their suggestions. Its helpful to remember that medicine is as much an ART as a science and its not called "practicing" medicine for no reason!!! it is a

subjective guess, a suggestion...and it is well within your rights to take it or not. As far as starting the meds, personally I never liked to start on Friday. I cant get my Drs over the weekend and the ER staff isnt as responsive to my needs as theyre often busier. I try to start meds on Monday and if a friend or relative will be available should anything odd occur ( but I am cautious). I never start them within the 3-4 days pre-period; never right before an event I deem important. Partly because the stress around those times means Ill never be able to tell what is causing a weird reaction anyway...the meds or the circumstances!!!I have for years timed my meds around whats comfortable for me...I am on variable patterns of dosages for abx for the MTBI...and I plan ahead so that the pattern doesnt add to my already dismal sx stuff!!! why shouldt we??? we know our bodies best; we know what in our lives is important and if an event like spending time with friends or a party or a graduation means skipping meds ( providing theyre NOT lifesaving and providing theyre not the type that you have to be on steadily) then why cant we CHOOSE???

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hey pooh!!

girl i totally understand what you are saying about the whole med thing and quality of life....I honestly dont see how it would hurt to wait until friday to start a new med.. I mean if you are Ok without it.. (that smy opinion).. and I think that you are entitled to a nice holiday dinner.. where you can feel human.. and not have to cancell last minute.. if you have a bad reaction to the med or if it causes a bad pot related reaction..

socailization is important and we have to grab it when ever we can.. its good to be around people and have a focus other then.. meds and health issues.. (sorry I hope that didnt sound harsh or rude..) I just mean that its a healthy mix.. as for many of us.. its easy for pots to become our life.. as it effects our life in every aspect...

i have a script for provigil to help w/ my severe fatigue.. and I am chicken and afraid to start taking it.. though I have it filled.. I'm sitting on..(have been since october!)..

So POOHBEAR you enjoy your holiday and your guest and you dinner!! you deserve it girl!! let us know if you had a good time!!

HUGS to you

Linda

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I do not think that you are being difficult or noncompliant. You are just wanting a little normalcy to your not so normal life. I can truly understand that. I know the frustrations of the meds verses quality of life issue. As I am sure most everyone here does. Right now our quality of life stinks! All you are asking for is just one little day, thats all. You know how you feel, but it is all up to you. My cardio told me to start back on the midodrine and my neuro told me not to , so what is a person supposed to do. I am going with my neuro on this. since my cardio is being a total waste of space right now. I wish that I could wave my magic wand and tell you what to do, but my wand is broken. Go by your instincts is the only advice that I have for you. Follow your gut feeling, and it will not lead you the wrong way(at least that is what my mom always told me). Hope you have a nice holiday. Wish I could help you. I am sending you a ((BIG HUG)) from me to you. :) Vanessa

I know many of you can relate. I'm feeling frustrated and just needed to vent.

I tried a new med and it worked okay for lowering my heart rate but I ended up being allergic to it.

I now have a new med to try which wasn't our first choice of meds this go round because it made me incredibly groggy during the med trial at Vandy & I didn't have as good of a heart rate response to it. I've tried dozens and dozens of meds and combo's of meds and I get frustrated with the process.

This probably sounds horrible but I got the new med last night and I decided to wait until Friday to start it. I am so sick of being sick so much of the time and every holiday. I have a couple coming over for dinner (I'm keeping it simple and light) and I just want to have one good day. I know if I take the medicine today or tomorrow I would have to cancel the dinner. Am I wrong for wanting the "social day" over starting the new med right away? I feel like if I ever explain something of this nature to my cardiologist that he looks at me as if I'm being difficult or non-compliant. That really is not the case.

I'm really frustrated by trying to get a Dr to understand that meds don't always make your quality of life better and sometimes I opt for the quality of life and delay the meds.

How do I get people to understand meds vs. total quality of life issues? Or am I wrong and should I be focusing on taking the medication and adjusting to the fact that maybe the med will keep my heart and BP healthier (thus maybe prolonging my life) and settle for a longer life over a more satisfied life?

Thanks for listening!!!

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Thanks to those of you who replied---you were a big help!!

I decided to hold off on taking the new med until Monday (once Dr's offices open back up and ER staff is more "stable" in case I do need them).

My Turkey day was okay. I was very tired but it felt good to have a normal day. I didn't go "all out" on the meal but it was nice and laid back.

Mom4cem, the medication I was allergic to was Aldomet (it's an anti-hypertensive).

In terms of the meds and deciding what we put in out bodies and fearing being judged as non-compliant---those issues are being compounded because of my LTD carrier. They are scrutinizing everything I do, every med I take or don't take. They seem to feel they are Dr's and can thus determine that I did or did not try a med long enough, that I simply must "learn to live with side effects" and if I choose not to then that's my problem and they aren't (in their eyes) obligated to pay my disability benefit.

It's been pure h**l dealing with them.

I try my best to "ignore" them and do what I need to do for myself but they make it very difficult to do what's best for me without severe financial consequences. It's severely stressing me out in terms of my finances but there's nothing more I can do right now. I try to stay focused on taking care of myself and worry about answering to them later.

Again, thanks for all your support and encouragement.

It helps to know and be validated by you guys that I'm not being non-compliant or difficult and that you all really do understand this!!

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Guest Finrussak

Hey Poohbear

I was given an Rx for aldomet also; last spring...right around the time I kept on being hospitalized and my local docs were begging for any kind of help...and getting turned away...I cant remember if it was Vandy (Robertson's group) or someone else like Mayo but they told my docs to try aldomet while I waited to see someone specializing in dysauto...long story short is my pharmacist ( again Id be dead a hundred times over if not for her brilliance and vigilance) called to tell me she thought Id have trouble with the inactive ingredients plus the list of side effects and contraindications alarmed her. After her ( and my own) research I WOULD have had probs with BOTH!!! so...it may have not been the actual drug you were allergic to...but one of the other ingredients...pand/or it may have been an expected/usual side effect rather than "allergy"...either way FOR ME, it wouldve been bad news!!!

Finette

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i can so relate to this thread. After my Florinef experience (going to work and feeling so freaked out and weird that I didnt move from my desk for 11 hours) I wasnt game to start my next medication for a while - infact it took me months to do so. I was feeling ok before hand and I didnt want to try the medication in case it made me feel worse as I was pretty busy at that time.

Then i had a bad period I gave it a go and it was much better - but if youve got things on at the time sometimes it pays to wait - if id had my florinef experience during a holiday or something it would have been a real downer.

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