coping with changing medication near death

Thanks for the people who wrote to me. It is good to talk to people who have some problems like me.

I am having lots of problems at the moment. I have POTS aka postural orthostatic tachycardia syndrome. what happens to me is that I have very high pulse, norm is about 120 - 150. I blackout a few times a week, it use to be 10 - 15 times a day before I got the pm. My whole life changed, I lost all my friends because I could not keep up with them and now I am 28 living at home with parents because I can't be left alone. I have been getting lots of pain down my arms, in the chest and back. Saying all of this I got very down, the doctors put me on lovan ( anti-depression ) In the mean time I put on lost of weight so the also put me on reductil to help loss the weigh. I was on a high dose of both. I found out the other day that the two meds can not be taken together, we found this out because I was just about dead from a serotonin overdose. It is now four days on and I still around but the heart is not doing very good. It is up to 200 bpm. I feel sick all the time and can't drive, go out or have a shower by myself. I am now on different tablets. Dothep has taken over from the Lovan, Naprosyn for the pain as well as di-gesic. Next time I want to have that time of the month I have to go into hospital because I can't cope with the heart.
Things are just not looking good for me at the monment I have taken time out from work not knowen if I can go back.
Im not sure what to do next. I would love it if someone could give me some advice or feedback.
Thanks heaps
freddo

5 Comments

Hard to be proactive when you feel lousy

by ElectricFrank - 2008-04-01 01:04:24

freddo,
It is difficult to deal with the medical establishment when you are feeling lousy. It is also hard to think straight. You need to either make a real effort to be aggressive or if that isn't possible find someone to be an advocate for you.

I would suggest a serious talk with your doctor. Ask what he/she suggests to manage your condition. I emphasize the word suggests, not order. If the doc doesn't seem to be able to handle it get a second opinion or another doctor. Be sure your questions are answered. Don't avoid the hard ones like "what are the chances I will get better?"

Finally, and this is a hard one, decide what sort of risk you are willing to take to get better. It is too easy to muddle along with multiple meds and procedures which are designed to be sure you stay alive. The problem is they make life more miserable and get in the way of healing. This isn't to say that all treatments are bad, just that they need to be well thought out and most docs don't have the time or willingness to do it.

I wish you the best,

frank

I wish you well...

by Swedeheart - 2008-04-01 01:04:43

Freddo,

If only our wishes could magically sprinkle sparkly dust over you and make you better immediately!

This appears to be a very trying time in your life, and rightly so. Frank's suggestion is extrememly important. We all need to have an advocate (strong one) to help us when faced with difficult medical decisions about our health. When we are really ill it is very difficult to be proactive and assertive when we need to be, it all takes energy! Talk with your parents or a friend, etc. and find the one person who will best support your wishes and advocate for you. It doesn't mean you can't advocate for yourself when you feel up to it, but it does mean they can help when you are just too tired, or they can assist you by asking lots of questions for you.

My husband has been a heart patient for years and we have had our health care directives in place for a long time. It has been very helpful many times when one of us has been hospitalized.

My advice, is try not to worry (right....) as that only increases our anxiety and lessens our healing time. [I am really bad at "not worrying..." so it is probably useless advice.] Concentrate on thinking positive things and getting the rest you need. People have the ability to be amazingly resourceful when given the chance and overcome extremely difficult odds. You have a support system here with all the good folks on this forum, we may not be right in the room with you ~ but will give support in any way we can. You are not doing this alone.

I wish you a good day today, and a better one tomorrow. I hope the doctors can and do assist you in positive and proactive ways.

Swedeheart

I have POTS also

by abc123 - 2008-04-01 11:04:26

I wanted to tell you, everything you are describing is how I felt. I am a 28 year old female and I got a pacemaker on feb 29 and my entire life is back to normal. I have returned to work and I hope to be driving again soon.

Dont give up on living alone and having a normal life. At your age you need to get the Doctors to make you feel better or find new ones!

My pulse would increase like yours and I would pass out, so you are not alone. I was taking Atenolol, pindolol, digoxin and Fleconide all at the the same time to help with the POTS and I had very little relief and a lot of sideffects. What are the DR's planning on doing to fix the POTS symptoms? Your profile does not say how many leads you have? I have 2 and my pm is helping a lot. Could it be a problem with the pm or the leads?

Be positive and keep trying to live your life, I understand how difficult it is. I have been there. If I can be of any help to you pm me.

Tammy

So sorry

by Suze - 2008-04-01 11:04:35

I'm sorry you are going through all of this, freddo. I can't even imagine how trying it must be for you.

I wish I had good advice to give you, but hopefully others on this forum will. I hope it helps a little knowing we are sending good thoughts and prayers.

And try to stay positive (I know, easy for me to say, right?).

Suze

freddo

by jessie - 2008-04-01 12:04:44

i don't know what to say. some tough life you are having right now. with weight i find that low fat is best to lose weight and lots of water. i never have more than 16 grams of fat a day. you tho are young so should lose easily when your other problems are straightened out. like abc tho and you i don't have pots so she is a good source of help. thank god you could go home for now to your parents home . jessie

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