[99fairies]

How am I going to survive this pain? It's never been this bad before. Nothing brings me relief. Dystonia is unbearable, I don't know how much more I can take.

[Shazerac]

sorry you are suffering so bad

[Tryingtobehappy5]

I hope you find relief soon, it must be terrible to deal with that. I will be thinking of you❤

[99fairies]

I want to just sleep away the days but if I do that I'll run out of my sleep meds too fast. I have a hard time falling asleep but once I finally do it's wonderful. Sleep is the only escape from the pain.

[Wild Coyote]

I feel for you.

Have you considered going to the ER to get some help?

I have had to go to the ER with dystonia in the past.

Thinking of you.


WC

[99fairies]

WC...what did they do for your pain? Did it help?

[~Christina]

I second go to the ER .

I’m so sorry you have to deal with such a horrible mess.

[emgreen]

Since you're feeling suicidal, the choice might be between the psych hospital or the ER. The ER would be my choice...by far. You don't have to tell them you're suicidal; all you have to do is tell them about the pain caused by your dystonia. You need some relief!

[99fairies]

I'm not suicidal. I just keep thinking sweet sweet death. I don't want to kill myself I just want this pain to end.

[bpforever1]

Pain is hard to deal with. I hope you find relief soon!! Please take care!!!

[-Astral-]

am sorry you are in pain ... you are in my thoughts healing thoughts

[Wild Coyote]

Originally Posted by 99fairies

WC...what did they do for your pain? Did it help?

They gave me IV meds to start, which helped a lot.
They also had the neuro resident come to the ER to determine how else to help.
They sent me home with meds.

You aren't getting relief, which would make anyone find dying welcome.
Dystonia is very painful, as you know. The ER is an option.


WC

[BeyondtheRainbow]

I agree with the ER. When I had dystonia once I was able to use valium to help until I could get cogentin so there are options your pdoc hasn't given you. They have other options too. That pain is awful and no wonder you feel at the end of your rope.

How much longer until the last injection wears off? Do you think the clozapine helped the dystonia (I don't know why it would but you stopped it and the dystonia came back, correct?)?

[99fairies]

What meds did they give you? I already have 3 different side effect meds and none of them work.

[Spangle]

Originally Posted by 99fairies

How am I going to survive this pain? It's never been this bad before. Nothing brings me relief. Dystonia is unbearable, I don't know how much more I can take.

Im so sorry you are in so much pain, it must be terrible not to get any respite. Hang in there Hun & take care. Lot of hugs to you.

[99fairies]

I have valium and cogentin and neither one of them help.

[BeyondtheRainbow]

How about a cogentin injection? I have no idea if this would work better than the oral but I know they use it when they are trying to get the pain to stop fast

I am so sorry

I just looked it up - does putting your hand on the back of your neck, side of your face, or near the cramping help?

I think I remember you posting this is a side effect of medication you need. I’m sure you’ve told your doctor. Is there anything that can be done further to treat it? Maybe research treatments?

[99fairies]

I did look for help online and they said if you know the cause then stop taking what is causing it. One of the treatments is brain surgery... Yikes!

[99fairies]

Rainbow... The pain did start after I went off the clozapine. My pdoc said that it helps with dystonia symptoms. and that was probably why I was in so much pain when I went off it. But is has been discontinued on my file. So no way to get more. I hated that medication though. My next shot is due on monday but I also have a pdoc appointment on wednesday so I'm not getting the shot till I talk to him. He may want to lower the dose.

Oh my gosh, what about calling the doc’s phone #—maybe he takes calls on the weekend. My doc does or one of the other docs will cover. They have a pager service. Maybe he will reduce the dose by phone beforehand and you can talk at your appt how it is going

[99fairies]

I have a major fear of general practitioners. As soon as they find out I'm bipolar they dismiss my symptoms and think I'm just over reacting. And they don't give me any meds without talking to my pdoc first who is impossible to get a hold of...especially on weekends. So I think the ER is probably not a great idea. Whiskey seems to be the only thing that gives me relief. But we only drink on fridays, so I am Drinking whats left over from last night. I don't get drunk... I only have a few drinks but it helps. It is a central nerve Depressant which helps dystonia. I've researched it and it seems to be the only thing that brings me any relief.

Oh, I’m glad you have something that gives some relief.

That is really not good that your pdoc is not available!!

I used to have a good relationship with my general practitioner. It isn’t the bipolar so much as it is my failure to get to goal weight on his diet he strongly advocates. I lost half of my excess weight, 60 pounds, and kept that off for several years. He used to be proud of me but that is gone now that I can’t lose any more weight. I think he thinks I’m lazy and non compliant.

I think my meds make it pretty hard to lose weight.

So I don’t like going anymore.

Anyway, that sucks that your doc treats you so poorly. We shouldn’t be treated any less than any other patient with a chronic illness

[Wild Coyote]

Originally Posted by 99fairies

I have a major fear of general practitioners. As soon as they find out I'm bipolar they dismiss my symptoms and think I'm just over reacting. And they don't give me any meds without talking to my pdoc first who is impossible to get a hold of...especially on weekends. So I think the ER is probably not a great idea. Whiskey seems to be the only thing that gives me relief. But we only drink on fridays, so I am Drinking whats left over from last night. I don't get drunk... I only have a few drinks but it helps. It is a central nerve Depressant which helps dystonia. I've researched it and it seems to be the only thing that brings me any relief.

It's interesting alcohol brings you relief.

This medical article lists alcohol consumption as a risk factor for dystonia.
Medication-Induced Dystonic Reactions Clinical Presentation: History, Physical, Causes

Any chance your dystonia was worse today after drinking last night?


WC