Hmmm What to do? Vent

This time last year I was taking pain medication, cholesterol medication, preventative meds, niacin and vitamins, two or three anti-depressents to deal with the depressing side effects of other medications, plumbing medications for constipation and for periods of diarhea, plus anti-anxiety and other medications - most to deal with the side effects of other medications.

Today, I use pain medications as needed plus regular cholesterol medications for my heart. From great handfuls of medications to maybe two or four pills a day. At the beginning of this month, I even stopped my preventative, Lyrica.

The result? I am absolutely miserable. My joints ache, my head pounds, no energy. Last night I went bonkers - confused and babbling nonsense. Just like the very first migraine episode that hospitalized me in 1997. Really painful and bad.

I can no longer drive safely nor even walk the dogs. They have taken to walking themselves ... they know the route as well as I do ... smart critters.

I am in really, really bad shape. When I awake I have a few hours of time such that I can think and write here. But by 10 AM, that will be over. The rest of the day will be spent in pain - head and joints and back - with periods of inability to walk or talk or think. TV drives me crazy with its commercials. Reading has even become challenging, Really bad off here. The telephone is horrible - I get confused and inpain while trying to listen to anyone.

I still have a few weeks to go before my body re-sets itself after a decade of preventative medications. the theory is that I will get better 10 to 20 days from now. that is a long time to suffer for me ... and relief is not guaranteed.

My doctor has suggested a hospital stay to flush out my system. I will probably do it in June ... after we see the results of no preventatives in my system. I hate the idea of going in the hospital. It would be in San Francisco so no visits from friends or family - just me in a cold hospital bed with nurses waking me up all through the night. Bah humbug. But my roommate and Mom say I have tried everything else, may as well give a flush a try. They are probably correct.

But I hate living in confusion and pain most of my waking hours. After a decade you would think I would be used to it ... but I always had some good days here and there before. Now, I do not see a light at the end of the tunnel. Bah Humbug!

Just needed to vent a bit. Thanks

I know someone who just got off of a lot of meds that I guess were making her feel worse than better. She says that she notices a difference and feels better.

Richard,

Hang in there. I know it sucks! I've been on a cocktail of meds for a little over a week and been miserable and was laying in bed last night and was thinking. I had a sneaking feeling it was one of the meds. One when I was on it before in conjunction with another med...it was a disaster - in so much pain. Called the doctor this morning. At first he tried to tell me that oh it can get worse at first and you're just in a bad cycle, we'll give you some steroids and you should be better next week. Bull Sh**! I can predict my bad days 95% of the time.

I sort of snapped at his nurse (and felt horrible about it) and said this is a big deal, I haven't been able to leave my house all week and it's getting worse and I think it's drug A not drug B because I was on drug A with drug C and had a similar horrid reaction. She went and checked with the doc and he agreed with me. Duh. I'm only the patient and of course I know absolutely nothing.

I know it's horrible, but there is an end in sight for you. A hospitalization could be a blessing - I know it's cold and lonely but they can hopefully manage your pain and some of the symptoms. Never know - there could be a cute nurse or doctor there. I don't know if or what your religious beliefs are but you could always request a visit from the hospital chaplain - just for someone "normal" to talk to. Hang in there buddy.

BTW - can you teach my dogs to walk themselves? That's a neat trick.

Becky

Hi Richard,

You're really having a hell of a time and must be absolutely on the point of collapse. I hope that you don't have to wait ages and that you get at least some relief soon. Heaven knows, it's virtually impossible to stay strong and in any way positive when things get so bad for us and it is so easy to become despondent but hang on in there.

Vent away Richard. I'm not very good at this. We care and will worry about you so make sure you let us know how you are.

Richard,

I would have to agree, the medications can put us over the edge. I agree with others, I think a hospital visit might be in order.

Not sure if you are familiar with Petadolex? It's butterbur, but oh, my I have had some great success with it! And I have suffered for 15 yeaars, the past 5 being almost unbearable. Mig. every day! I have been on Petadolex since April 10, and already I have finding great improvement.

Something to look into....

Praying for you to have the wisdom to know what to do!
Blessings,
Sherri B!

Richard, Sorry you are having such a rough time. I think you are doing the best you can for now. Take it one day at a time and you will make it to the end. Are you sure the cholesterol meds arent causing some of your overall pain? I wont take them, since I couldnt tell if they were causing side effects that can be dangerous.
Hugs,
Cindy

Richard,

What cholesterol med are you taking? This can contribute to muscle and joint pain--significantly.

Also, Lyrica can be a rough culprit. It definitely can help with muscle & nerve pain, but can cause a whole host of other symptoms.

Like you've said, medication to treat the side effects of other medication. I've been down that road and it is really bad.

Good luck,

MGB

{{{{{{Hugs}}}}}} Hope this bad spell ends soon Richard.

Richard,
you're a brave boy. Most of us would give up and continue with meds rather than feeling so lousy.
I know that my opinion is not original, but I think that it's worth to resist and hope for the benefit of this drug withdrawal.
At this point, your chemistry needs to find its own balance and in the meantime it generates confusion in your body.
I hope that it will soon end and that you can enjoy life again

Hugs

Richard what you are doing is very wise and you are a load braver than me. We can so easily get trapped into a cycle of taking more and more meds and taking time off to let things reset, despite the misery of it must be really worth it eventually. Vent as much as you like. We're here to give you support.

Di

Yes! some of those cholesteral medications can be terrible. A friend of mine took one and now has somethiing like fibermyalgia! He is on a steroid for who knows how long now.

Sherri, the Butterbur still helping.....I must try it.
Got some but having a long run of stomach problems so a bit dubious.

Maybe Richard should try it if he hasnt?

What has it done for you?

P

Hi Richard,

I'm so sorry you are having such a rough time.

It sounds like a hospital stay might be in order. However, if you did go that route, could your roommate or another friend be in San Francisco with you? I'd hate to think of you alone in a hospital-especially when you are in this state. I know you lived in SF so maybe a friend there might be willing to help or check in on you if you have to go the hospital route.

From time to time, I have had to do the get off all meds thing too. Never, ever fun, but sometimes it helps. I am still working on the "less is more" approach. Currently on T3 four times a day (it was as needed, but since the wires broke, I have needed something more.} I am also on zoloft and diazepam (though my dr has allowed me to take more than I usually would due to broken wire} and zanaflex. I must admit I feel more myself since the other stuff was not working and just not helping. I am still in constant 8-1O pain daily- the meds take the edge off, but that is it. If you throw in the fainting, its kind of hard to function though. (Even on this medication, my mom is constantly telling me that this is too much.- after coming off MSContin 3mg 2/day, Ritalin, as needed T3, as needed fiorinal. } Either way, it's awful.

I really hate that we have to go through this-especially you. Here are a couple of thoughts- feel free to take them of leave them-
1. you could see if there is anything lighter you could try at home to break the cycle of pain- steroids maybe.
2. Benedryl often helps me during these times- it has to be a high dose though-75-1OOmg. (my neuro has reccomended it in the past. it might help for a little while.
3. hang in there for ten days and see what happens.
4. if nothing is helping and still not able to do anything- the hospital route might be the best way to go.

I know distrations help me- I am not sure about you- can you read something really light? Or watch a movie (unless that bothers you}. I have found that soft music also helps me sometimes. Ice packs and of course, the cold, dark room, but you can only do that for so long.

Sometimes, I wish we lived closer to each other so we could help each other out during these times.

I hope this advice helps. I am sending you hugs and keeping you in my thoughts and prayers- hoping you get better soon.

Pain free days,- may they happen soon.

Sailingm

Thanks Sailing Muffin et al ... excellent ideas which I will pursue.

I have learned to take the good time when it comes. At 5 AM I awoke and felt normal. I HAD to go to a grocery store today - the dogs and cat need to be fed. My roommate is out for the day and night so it was either drive or ask an elderly neighbor dealing with a husband healing from advanced leukemia to drive me. I hate to bother her though she would be pleased to be asked.

So I felt so alert, so normal, that I drove to the store and purchased the basics. About two miles from home, on a lonely country road with no kids and not traffic, I began feeling badly. Made it home in good shape. No confusion or such - I would have stopped and called for help. Just that, "things are going to get bad real soon" feeling that slows one down. But I made it home, dragged the grocery sacks in, and put things away.

I came online to check out the forum and will now head for my QDR (quiet, dark room) and an ice pack. Ice does help on occasion.

Thanks again to all of you. You make my life better and easier to live.

Hang in there Richard. Quite a few years ago I went of all meds and it was tough for the first month and then things were much better. I was able to go for a bit more than two years before things got bad enough to have to go back on meds.

There is something more wrong with me that just the migraines so I will probably be on meds forever. I hope that for you, going off all the meds will help. Lyrica is a wonder for the body pain and such so coming off it is going to be hard til your body readjusts.

I hope that you feel better soon. If you do have to go into the hospital, just hold in your mind and heart that it is temporary and when you get out you will feel way better.

HUGS
Alli

Pen, I would definatly try the butterbur. I am going to order my next bottles tomorrow. I don't want to run out.

I was having migraines almost everyday, and even when I did not have one, there was a strange feeling in my head all the time, headpain, and "thumping" it was awful. That is almost gone! And last month I had 20 treatables, and this month only 7 treatable so far! And they aren't near as intense as they were.

They say you need to take them 3 months to get the full affect, well, I can't wait if it's working this good already,

Believe me, like most of yu all out there I have tried EVERYTHING! no kidding, this is working!!!

I wouldn't worry about the stomach thing, I'd try if I were you! The stomach problems are probably from other medications...

Go for it!!!

Sherri B!

Thanks Sherri. I would like to post of your success on our FB group.
No names or anything of course.
But it is so good to hear first hand of success.
ESPECIALLY without drugs.
Would you mind me just mentioning please?
It is amazing, and you seemed to feel some improvement quite quickly.

I am so pleased for you.

Pen

Best of luck Richard.
Hope it pans out for a better quality of life whichever way you go.

Pen,

I don't mind at all. I was going to do it, but just haven't had the time. I was going to start another post.

You can, and you may use my name if you'd like, I am so zealous and happy about this. I just ordered my next 3 bottles. With shipping it is $73.94 for 3 bottles. (there is a small discount for buying 3 at a time. I am getting them from Better Health International. Good stuff!

I can't wait for my next Neurologist appointment so I can tell him. Maybe he will pass along the good news to other difficult patients. He is a believer in vitamins and supplements.

Thanks,
Sherri B!

Richard:

I'm glad to hear you were able to get a few things from the store and return safely to your QDR. Hope you're feeling better now and are closer to making a decision about the hospital.

Thanks Sherri, if you are on FB, look me up, join our group.
I am so glad to hear your news, it must be marvellous to have this improvement.
I hope it lasts a long time.

Pen

Pen,

where do I find you on f.b.? and what group? Maybe you could find me and ask to be my friend?

sherri b wrote:Pen,

where do I find you on f.b.? and what group? Maybe you could find me and ask to be my friend?

Send me a PM with your FB name and I will do just that.

Thanks again guys. Today I changed my family doctor from my beloved San Francisco friend to a local doctor I admire. We met, he says my many current symptoms CAN be explained by my ending my preventative on May 1st and with hay fever. Never thought I had allergies ... but taking a few Benedryl has made a world of difference. With a little salt water gargling ... and letting time pass for the re-setting of my nervous system ... I may just make it after all.

It struck me that this new doctor may be able to oversee my blood flush locally. Would n't that be wonderful! I am definitely going to pursue that line of treatment if it can be done locally instead of in the City. I intend to do it anyway ... but a local hospital would be infinitely preferable.

Thanks agian

It is amazing what a little Benadryl can do for a person

Cheryl