can't take my sleep meds anymore; side effects

I had an awful problem with my seroquel Saturday morning.

I woke up and I could not swallow.

and I almost could not breathe.

It went away after a while.

I lived.

I am going to follow up with my doctor Monday.

I googled seroquel and it talked about it being a side effect.

I am also on pain meds (codeine/tylenol).

I took an ambien last night and it made me dizzy all night (room was bouncing up and down) and nauseous the next day.

I definitely need to talk to my pdoc and I pray he will not think I am dificult.

So far, I am having a very hard time sleeping.

ppl have been cyberbullying me, too and I have been having depression again from the depressive effects of the barbiturate, the pain meds.

Really hard time now.

I would like at least a "thanks for this" or a "hug", if no one knows what to say.

I try to be supportive toward you guys.

I dont feel good now.

If I get no answers, or thanks, I will delete this.

Billi

I wish I could delete my foolish message.

thanks for not responding.

I asked you guys nicely for some supportive words or some hugs.

Now Im upset.

Billi

Cyberbullying is so mean & hateful. I'm so sorry you're going thru this. Gave you Thanks & Hugs 'cause everyone needs somewhere where they can get what they need just by asking. You deserve it!
** hugs galore **

I apologize for my words.

How can I ask for support and get it?

I was going thru a terrible time this weekend and when no one answered this after I asked for some replies I felt very hurt.

I was hoping this site was more supportive.

Especially in December.

And when I was going thru something bad, you were not there for me.

I can validate myself better now, but when I ask for some support in a nice way, I wish I could please have it.

at least a "Billi hang in there."

I know that we cannot be everything to everyone, but I do try very hard to be there for others here to the best of my ability and if everyone tried doing that here, not just some and not just for some, I think PC would be even better than it is now.

Billi

Billi

thanks roadrunner.

If you saw my last entry, I apologize.

I am human, I am not a saint and I do appreciate support when i get it here.

thanks again,

Billi

I also apologize if I did not see the hugs or thanks right away.

B.

Hey, Billi, don't worry about the other stuff. You should have had a reply a whole lot sooner--we're usually much better than that around here. You get to feel your feeling & without having to apologize for it.


Roadrunner

thanks.

I just saw all these replies to others on here, incl. my own replies and nothing for me earlier.

I appreciate your continuing support.

I was just surprised.

Even afraid that some ppl on here don't like me or what I say to them.

The old stuff comes up again. "Billi, nobody likes you". (what I used to hear all the time growing up and even as an adult.)

Billi

I was also afraid ppl were judging me on here as uncooperative with my treatment, esp reading my profile about my radical ideas about my therapy.

We have a right to disagree with one another, but I just really still dislike unresponsiveness. It can be often interpreted as silent ridicule or criticism. (not always is, but it can feel like that).

Billi

please be patient. there are a zillion forums and a zillion posts for the zillion people on here. I know that some of my stuff goes uncommented on and I'm really appreciative when people do take the time. if you're looking for instant feedback and feeling a bit panicky, remember there are crisis helplines that are free where you can talk to a someone in real time...

I AM patient, as patient as I can be.

In case you have not read my other posts on this thread, I have explained why I have not been feeling too good.

and I don't need a crisis line, nor do I want one! They have not helped me.

I am not suicidal.

Just expressing what I need.

Billi

I also want to thank roadrunner again for *her* patience with me.

Billi

Aww Billi,

I would definatly have replied. I have taken a bit of a leave of absence from this site finding my depression and Xmas too much to bare at the moment.

I haven't read your profile, but I myself have some " different" ideas about my own therapy and treatment. So I can understand that. You have a right to think or feel however you do about it.

The cyber bullying, I don't know alot about it and right now I wish I did, so I could offer some useful advice. Can you stay away from wherever this is taking place. Or report it? I just don't know. Bullying is awful in any way shape or form. It is abuse. You don't deserve to be put through it.

The sleep thing, now that I can totally relate to. Still struggling with sleep meds myself. Don't worry about your dr thinking you are difficult. I don't think he/she will actually think that. Sleep meds can be difficult. Hopefully they can find you something that will work for you. And remember that's your dr's job, and I'm sure they would want to get this figured out for you. I hope you can get some sleep. I really do. I am about to take something I hate as we speak to hopefully put me down for the night.

Xmas is a hard time, definatly so. You are cared about here I am sure. We haven't had the pleasure of meeting yet, but even I care. if you want or need to talk more, I'll be around. I'll check in on your thread too to see how you are. Billi Please hang in there. We can get through this together right? Your definatly not alone.

thanks.

I really appreciate such supportive words.

And I understand if h olidays can sometimes interrupt normal activities, esp activities online.

I am going to see the doc Wednesday. I pray he is the patient person I believe him to be. I have had so many pdocs call me uncooperative.

I actually can sleep without the meds, but it's just more difficult. I am trying melatonin again.

Billi

I've never tried melatonin, suppose I should. I hope that will help you out some right now. How have you been doing otherwise?

well, I think I might have lost my doctor now. I am not positive. I tried to call them about my new therapist and they said they were busy and can they call back and they have not.

I have major abandonment issues and I want to not have to sit by the phone. Or toady to them and call again. I am pretty sure they are very annoyed with me about my med issues and my freakout in their office when I could not find my wallet and when I did not want them to inject me with ativan and benadryl together.

Then my new therapist showed up today and after she tested me, she decided not to see me and would not tell me how come.

So, I am left high and dry again.

I can't keep putting myself in places where ppl can't h elp me. *And NOT BE HONEST ABOUT IT*. I can respect them if they come right out and say, "Billi, I don't know what to do for you. Your problems overwhelm us and we can't have this going on." I hate excuses and little stories.

I am an honest, no frills, tell it like it is consumer. I strongly dislike professionals' attitudes surrounding their own insecurity about their money or their job or their prestige.

If I need to correct a problem or stand up for good therapy, I don't need retaliation!

I will learn to sleep on my own.

thanks,

Billi

I am bumping up this topic and reading it again and I want to let the ppl who responded to me that I really appreciated what they said to me on this.

I am still having a hard time sleeping.

On more recent threads I have made since this month, March, I have mentioned that my pdoc has been not good for my mental or physical health---at best, got too busy, at worst, got annoyed with me or overwhelmed and could not tell me so. For ever since that last day in December they had not been helpful to me, not even when Bruce was suicidal last month!

So now I found a new medical doctor and he gave me some dilantin for my pain, (caused now by trigeminal neuralgia resulting from too much dental work at once and too much period!) but now I am scared that they have similar side effects to the seroquel. I just read that they affect the cerebellum, which controls breathing! It also affects memory and that's already going!

Like my status says, I am "unsure of my next step".

I want to sleep.

I probably could even train myself to if the pain would only not flare up at night.

and the dilantin is supposed to help.

But it has dangerous side effects, according to some research I have been doing---again the doc never tells you anything---even if you ask! ( and of course I said to him, "Are there any side effects I should know about?)

Well, patients will tell you, but many (not all) doctors will not. Otherwise, they risk the patients not taking the drugs and that hurts their business or their sense of ethics as doctors.

G*d bless him.

Billi

Everything has side effects, many can have potential serious ones but most people do not get those! You have to decide if you want to sleep more or worry about those side effects. I don't get "many" side effects, I've only had one or two drugs I had to quit taking (penicillin and the antibiotic flagyl) but when you get the side effects the first time, they are usually not as serious as if you were to take the drug again/over a long time. The only meds I won't consider now are those with "black box" warnings (side effect of death, kind of defeats the purpose if you get that side effect? :-)

Not sleeping well can have more/worse side effects I think than the meds taken for a short time to allow the sleep while your pain area heals.

Hi, Billi. Since you're being given the Dilantin for pain and not the epilepsy for which it's usually prescribed, you're probably also getting much lower dosages. The warnings you read about most likely don't apply at the levels you're maintaining.

Dilantin is one of those drugs that's been around for nearly ever and is really as safe as a drug can be, really, in the lesser amounts it's prescribed in for pain. Here's the site I rely on:
http://www.epilepsy.com/medications/b_dilantin_side

As you'll see, no user has reported problems here. That's a good sign.

I'm so sorry you're still having sleep issues. It's terrible, you're right--but with luck you'll find yourself in a better working partnership with this new doc.

Best.

Roadie,
formerly Roadrunner

Hey (((billi leli)))

I know what it feels like to not be able to sleep. I can't take the sleep meds now because of the pain med's I'm on. Overall though I'm very happy w/ my medications right now. I don't have a P-doc per-say My main doctor is from a Pain managment clinic because of the medication I take I have to see her every month(USA FED rules), I see the P-doc from there also every month. He gave me the sleep meds and the pain doc stopped them because of the conflict(low blood pressure-and the possibility that I would stop breathing) I admit I really did like the three months I had them. I never took them more than a few days at a time but it was wonderful to go to bed and fall into a dreamless state and not wake up until morning and wake up feeling like I had accually slept the entire night, refreshed! I also understand my pain docs position. Ambian is only supposed to be given for short term.

She did give me a referral to a sleep specilist. She knows it is most likely pain and PTSD that wake me but it was just too dangerous. USA is very strict about pain med's and pain clinics have lots of rules, but I have never felt better than I have since getting my care from her. I don't know if you have enough pain to go to a pain clinic but good ones have P-docs also, it's kind of all in one place. I'm kind of rambaling here but I just wondering if you have ever thought about looking into a pain clinic? I remember from other post that you have PTSD, but I can't remember if I've ever seen you say you had pain issues or not. It's just a sugestion because of the trouble you were having with doctors. The P-doc at the clinic is an expert in PTSD which I never had before and it is a nice change. I'm learning new things I never knew before--like it is normal for my PTSD symptoms to escalate when I have to have medical procedures. I've been told I was "acting up" "feeling sorry for myself" "looking for attention" now I find out it's "normal C-PTSD behavior! Very soothing to be told I'm normal even if it is only normal C-PTSD! I feel validated. I know insurance is hell but if pain managment clinic isn't an choice is there any way to find a P-doc that knows PTSD? Just getting validation might help a lot with the sleep, it has me. Even though it's not to the same extent as the sleep medication helped. Somehow having "professionals that validate me has helped overall, which has helped the sleep.

Don't know if this will be helpful but I do get it. Sorry I wasn't around in Dec. I took a year long break from PC.

thanks sidestepper. I can't find a pdoc who validates because of my insurance being so limited. Or a therapist. But hearing validation on PC does help a lot!

ty too Perna. I realize the trade-offs. That experience with the seroquel scared me so badly. Anything that affects the brain now scares me. Esp the cerebellum.

ty Roadie, too. I know that Dilantin has been around. So has many antipsychotics. I have not thrown away the pills. I might still try it. But I am just so scared to. I would not be so scared of annoying side effects, but BREATHING. OMG.

thanks,

Billi