Question

[wareagle]

Well, I was dx earlier this month and was given meds. to try..unfortunately I haven't been able to bulid up the courage to take them. I know this is irrational..but every time I even think of taking them I get really panicky. I know that I won't get better without some help..and I know that I should feel good that there are things that can make me feel better..but I'm still scared. I just feel so bad all the time..I don't want to feel worse...and I hate feeling "druged". I've been pretty much in bed now for almost a year..only sit or stand for a few minutes at a time..I have to do something! I've decided to start this weekend..and only take a 1/4 tab. instead of 1/2 tab of florinef and clonodine. My Mom has been really supportive..but I know she's getting frusterated that I won't even TRY the meds...heck, I'm frusterated with myself..and angry that I can't get past this. I mean if I can't take these then how will I ever have the courage to try other more "extreme" medications? Anyone have this problem? How do I get past this? Thanks for listening!

[Jaime]

I completely understand your hesitation with trying new meds. You already feel bad and you definetely don't want to feel worse. I haven't ever felt "drugged" with the florinef. I recently had this problem with starting prednisone and neurontin. It actually took me a month to try them. What I did is I went to talk to my family doc about it because I really trust her and she helped me get over my anxiety. Eventually I was so sick and in so much pain that I could not live like that. You may have some side effects at first, but hopefully your body will adjust. I had some side effects when I first started the florinef, but it made me so much better and able to function some what that I just had to forget about the side effects. If you have been in bed the last year then it (hopefully!!) can't get any worse. I would try talking to someone you really trust and then just force yourself to try the meds because otherwise you will always wonder if they could have made you feel better. I hope that you start to feel better! Let us know how you are doing!

Jaime

[corina]

Hi wareagle,

I know it's very difficult to try new meds, because you don't know what they might do to you. Since march this year I''ve tried several meds in finding out what helps me best. I found that very scary too BUT I think you have to give it a try. After things got out of hand in taking too much fludrocortisone in just a short time (which my neuro advised me) I started off with just very low doses. That's what I do with every new med I'm trying. Two weeks ago it went wrong again in starting new betablockers and it made me feel very depressed but I had to try it because when I don't try all I can do is just be in bed with my kids making me breakfast, not able to take a shower and definately not go outside (not even by wheelchair) and there are so many nice things in life. There is a chance for you as well. And although I really understand your fear, I do advise you to give it a try and start your meds and start as low as YOU feel you can handle. Hope to have helped you a little (as others helped me out), wish you all the best and let us know how you're doing.

Corina

[EarthMother]

Its so hard, because our systems are ultra sensitive and we probably went too long without a diagnosis that understood the complexity of our autonomic reactions. So we often took meds that were too strong, or counterproductive.

I think your idea about breaking the dose into smaller pieces is a good way to handle a new introduction. Sometimes I take the drug at bedtime, when I am GOOD AND TIRED and know that I'll fall asleep soon.

It's not an irrational fear. Just one that we have to approach in our own way. My doc knows how I handle new drugs so he gives me a very low dose (usually child's dosing) but then let's me titrate to see what will work best for me. Even at that, I am still very weary of anything new.

I'll let you in on a secret .... I bought vitamins last week because I read that Zinc and Iron can help with brain fog .... but I've been hesitant (ok frightened, if I am being completely honest) to start taking them. I've decided that I'll open up the gel cap and empty 2/3rds of the powder and see how a smaller dose goes before I bite the bullet and start taking the two a day as recommended on the bottle.

Meds have their place and have certainly done wonders for so many of us. But there are lots of folks here on the boards who are not taking any prescription drugs at this time. Don't beat yourself up too much. It's easy in our pharmacudical driven comercial media to think that if we just took this little pill all of our problems would disappear. But most of that is hype. I believe our bodies instinctively know how to heal and I hold on to the hope that mine will lead me to what is right for me to do at the right time.

Good luck on your healing journey.

EM

[MomtoGiuliana]

I understand your fear, particularly if you have had bad experiences with medications in the past. Unfortunately, like most people with this condition, you are most likely to get much better only with the support of medications. And this means trying (sometimes) a few different meds before you find what works for you. You are right that some could actually make you feel worse--that was my experience. And whatever you do end up taking, it is probably still going to be a long haul before you start to feel a lot better (could be months). Take things one day, one pill, one minute, sometimes, at a time. It might help to see a counselor, or this might sound strange, but someone trained in hypnotism. Such folks know many techniques for helping people control their own thoughts a bit better. (I'm not suggesting you be hypnotized, per se!). I saw such a practioner, who was also a counselor, and he really helped me to manage my fears and anxieties with both mental and physical techniques (e.g, breathing and meditation exercises).

I also agree with what Earthmother states, that the body does know how to heal. Try to have faith in that as well--it's important to the healing process, whether you take medications or not. There's a great book called Spontaneous Healing by Andrew Weil that I recommend.

Take care and keep posting whenever you think anyone can be of help.

Katherine

[danelle]

Gosh, you sound like me to a "T". I am exactly the same way. I mean exactly. I have had numerous bad experiences with meds and am so sensitive to them anyway. It took me a LONG time to get to the point of even trying a miniscule amount of what the dr prescribed but finally gave the meds a chance. right now my dr is wanting me to try mestinon, and if that doesn't help then adderal. I am going to try the mestinon tonight-although I am scared beyond words but I am going to when my husband gets home so he can be with me.

Have you considered trying the meds when someone you really trust is with you and can help you if you need help? That has helped me. I am also going to go to a counselor next week(if we have the money) who is going to try some biofeedback with me on certain issues that I have-anxiety, panic, medical scares, coping, etc.

Please know you aren't alone, I can honestly say that I think I am the most scared person in the world to try a new medication.

Please let us know how you are and keep us updated. I'll be thinking about you, good luck!

[ethansmom]

You are not being irrational in this case...your reaction is very normal. I'm sure you have some reservations based on your fears and uncertainty, and that's totally normal. It takes many of us several months to find a medication combo that works, and there may be side effects along the way...but if you don't try, you'll never know- and anything is better than forever committing yourself to being in bed. Be strong, and know that you can fight this with all your heart!! Go for it and let us know how you progress!!

[opus88]

There is a way out without taking medicines. I'm not saying "cure" - not yet, anyway. I do still have backward slides from time to time and still have some symptoms that generally are relatively minor compared to what they once were.

The Metabolic Typing Program (www.metaboliced.com) has been monumental in giving me a life again. It's a lot of work, but worth every penny and every moment I've invested. The brain fog is so much less, my energy levels are almost normal many days, I can usually tolerate the heat now and be on my feet much longer than "usual", and on and on - and some days I feel not just ok, but truly GOOD for the first time in many years.

You can purchase the book Metabolic Typing Diet as a starting point. However, people like us are way too complicated for the parameters of the book. I joined the program at the highest level of testing and counseling. It's been incredible. I encourage EVERYONE to look into this. Feeling even just halfway better than most of us feel right now would be incredible by our lowered standards of "normal" health.

The whole premise of the program is to balance the autonomic nervous system. And of course whether it's called POTS or MVPS or neurasthenia or whatever else, it's all under the dysautonomia umbrella. (And no, I'm not affiliated with them in any way except as a client, so please don't think I'm trying to sell anyone anything for my own profit! I just am so excited about what it's done for me that I have to encourage everyone to at least look into it.)