My Nightmare With Seroquel

[MissMacD]

I started Seroquel around Christmas last year. My doctor convinced me to start it because I couldn't sleep. My trauma is deeply rooted with medication as I was drugged against my will as a child so taking medication is always a last resort for me. My body has never responded to medication well, there have been unreal side effects or it has stopped being effective after a few months.

When I started Seroquel there were side effects that were worth getting some sleep after not sleeping for over a month. I am a tough girl and I can put up with a lot so when my sinuses were swelling shut I didn't think anything of it. I put up with to foggy effect that the medication had on me throughout the day. One of the days after I took my medication I started wheezing and I had to rush to the hospital where they gave me benedryl. Despite that event I was told to stay on the medication because I was trying to be cooperative. For most of the time I was on the medication throughout the year I put up with the respiratory issues until a few weeks ago when my sinuses started swelling to the point that I couldn't swallow a beverage and couldn't breathe with my mouth closed.

I phoned my doctor who was conveniently on vacation and her secretary/nurse told me to stay on it until she came back. A few days ago I ended up going to a walk in clinic and I tried to explain to the doctor that my body is physically addicted to the medication but it is potentially putting my life at risk and he wrote the side effect off as me having anxiety. What part of my airway swelling shut is anxiety? He told me to stay on it too and sent me home with a bottle of Immovane.

I've been off of Seroquel for three days now with no doctor supervision. The person who prescribes medication is there to refill without questions but when complications arise nobody wants to take responsibility. I have a hard enough time trusting people but when I can't get a medical professional to give me advice on what to do in a potentially life threatening situation its just me. Again.

For the past three days I've felt the rough set in of withdrawal. I have cold sweats and I feel confused. I have a hard time with simple tasks. Somehow last night I cleaned my entire room in an attempt to pass time until I stop detoxing from this toxic chemical.

I see my family doctor in about a week and she is going to get an earful from me. Just because you can't see my illness doesn't mean I should be treated any differently than anyone else. I am tired of people not taking me seriously. I am tired of my body being a disposal site for medication that is slowly killing me yet the label claims it should make me better. I am not even thirty but today I feel twice that. I just need some support, someone to trust. When I need help or I get into a crisis they don't make time for me.

I was on 50mg.

 

[EverOnly358]

When I can't get a medical professional to give me advice on what to do in a potentially life threatening situation its just me. Again.

Hey MissMacD,

You are not alone. Medications terrify me. I hate doctors. I was on every single anti-depressant ever marketed. It was horrifying to me, what I went through. I had every possible side effect plus ones they told me weren't even possible. I'm extremely sensitive to medications.

I cannot believe what you've gone through... except, I've gone through some of the same.

I went to the doctor today and came home with a great big bag of candy. Including Seroquel, which he wants me to ramp up to 150mg per day over the next 2 weeks. Lovely. Assured me over and over again that it was NOT addictive (not that I trusted him, I didn't agree to actually take the pills, just agreed to take them home with me), because I've been addicted to prescription drugs before, and I don't plan to be again. (What a nightmare that was!)

I am so sorry you're going through this. I could go on for 3,000 words right here about why I hate and don't trust doctors, but I won't. I just think that's all incredibly horrible, what you're going through, and that the doctors aren't helping. My flashbacks involve not being able to breathe, sometimes for minutes at a time. I really, really feel for you. It's terrifying not being able to breathe.

It's your body, it's your mind. You're not a lab rat to by played with and then ignored. So give your doctor an earful!

Again, I'm so sorry. Hang in there! I know medication works for some... but that hasn't been the case for me, at all. I hope it helps to know that you are not the only one. Keep advocating for yourself. You deserve to feel better!

D

 

[MissMacD]

I've been really sick today. I can barely get out of bed to go to the washroom. It feels like a bad extended hangover. I've had the hardest time producing enough body heat to keep me warm. Thankfully my dogs have been snuggling on my lap all day. I was only on 50mg at bed time. I can't imagine what people go through who are on ten times that much. I am aware that it is a life saving situation for some but I don't feel that it is worth my life to take something that knocks me out cold after making my respiratory tract swell. I have unconsciously become afraid of dying in my sleep because of the whole airway thing.

This is the third time I've been left to rot on my own when my medication got scary. First time was Remeron, second time was Effexor. I should have been hospitalized and medically supervised but yet again there is nobody to be found, just people scowling at me and telling me to take the very medication that has been making me gravely ill.

A few months ago I started having weird sleep patterns where I'd want to wake up but no physically able to sit up. It was scary and very much like being paralyzed. I've been physically sick with a cold most of the time I've been on Seroquel. Time to start over and find someone who cares about me instead of what bonus they get on their pay check for prescribing me another questionable drug. Modern pharmaceuticals scare me and I feel that the industry gets away with a lot with psych patients because nobody believes me anyway when I tell them something is horribly wrong.

 

[EverOnly358]

I am so sorry you've been feeling really sick today. That's just so hard to go through, I know. Dogs are great, good! I hear you about being afraid. I wish these doctors, that have studied and trained for years and years just to help people... I wish they would actually TRY helping once in awhile.

That's scary for me, what you said about not being able to physically sit up. Prozac was the first drug I took, years and years ago. I just laid in bed for 14 days, like in an awake coma. I couldn't move. I just laid there, staring at the ceiling, unable to think, unable to move. My husband called the doctors frantically. No one would get back to him. He was afraid to just take me off the drugs without someone to tell him it was okay. Two weeks went by. I don't remember much. It was like an awake coma. Eventually, my husband decided he was going to stop giving me the pills. Eventually I recovered. And spent another 14 years going through much the same treatment. Except the side effects were so much worse with the later drugs.

I know, I know about how devastating it can be when you ask for help and no one helps you. But hang in there. It will get better. And in the meantime, know there's someone who gets it. Because it's not your fault. Hang in there.

D

 

[radicalgratitude]

MissMacD, I am sorry you are going through all this. I was on Seroquel for sleep, too. I was still having difficulty at one point so they also tried Ativan (in addition to the Seroquel). I was having serious jaw problems (and turned into a zombie) and saw a jaw specialist. He also specializes in sleep disorders, and he was livid when he found out that a psychiatrist was trying to do the job of a sleep doctor, without any sleep study done. He said I could have been killed because as it turns out I have an unusually narrow airway and the Seroquel/ativan relaxed those muscles even further. That is part of what lead to my night terrors; that is why I wasn't sleeping well. I now wear a double bite splint at night that pushes my lower jaw forward, opening up the airway. I do exercises in the morning that return me to my natural bite.

Seroquel is not even supposed to be used for sleep. It is a powerful anti-psychotic. I recommend getting a second opinion from a sleep doctor. The specialist told me never to see a psychiatrist for my sleep again. He said he wouldn't prescribe me anti-depressants and he doesn't think psychiatrists should cross over into his specialty either. It's too dangerous. He managed to stay professional but I could tell he was fuming underneath.

 

[gnirolockoob]

I've been taking Seroquel 100mg without side effects for at least a year now. I take it with a variety of other medication too. Medication either works for me or doesn't have an effect at all. I also don't get fevers so maybe I'm just dense as hell.

 

[Lucycat]

I have been taking Seroquel for over 3 years now. Was on 75 mg, now just 25 mg as I don't need so much. I have not been able to manage stopping it entirely - did have 2 weeks off when I was on holiday, but as soon as I went back to work I found I needed it again.

I certainly did not have any side effects on or off it as you describe in the OP.

 

[blackemerald1]

I am on 600 mg of Seroquel and still have severe insomnia hence me sitting here and writing at 5:27 in the morning. I may go to bed soon but I wake suddenly and for no reason at about 7 am have a cuppa and go back to bed and maybe if I am lucky I get another 2 hours sleep. I take seroquel in conjunction with other drugs. I had silly side affects from the Seroquel initially but it solved a serious PTSD episode that hospitalised me for 6 weeks. I am sorry you are going through so much trouble with your doctors and meds., I hope that you get the right treatment soon. By the way, I am not psychotic, I take the Seroquel to even out my moods and it has been the only drug which has worked for me and I know how bad it is to be trialed on drug after drug I hated that experience. If you doctor is not listening to you, find one who will but they are few on the ground. I hope you feel better soon.

 

[gnirolockoob]

I've never thought of Seroquel working for letting me sleep I've always thought it was the benzo. It's 3:43am here @_@

 

[zaniara]

For a few years medication(SSRI: Prosac really) saved my life. But that was when my depression was so deep that I was suicidal all the time, but then, after a while it stopped working for me. And when I've tired using medication after that it has always given me unacceptable side-effects. Going off them is hell unless you are really careful and set them out real slowly. I understand that you felt desperate and wanted to get off them as soon as possible, when the side-effects were that bad. But if you get too much withdrawal symptoms, you might have to get back on the medication and set them out a bit slower. I had to do that once: if that happens the withdrawal symptoms don't go away even with time: in that case the only thing you can do is to put them back in and then remove them slowly. I hope you don't have to though!

I reacts very strongly to a lot of medications, and I also get so much side-effects from all of them! (I think some people just work that way, and for others the medications work and those people don't get the same amount of side-effects.) I'm so glad I can manage without them! But I do use a herbal medicine instead(arctic root, search for Rhodiola rosea in Wikipedia if you want to know what I'm talking about) which helps me to keep the depression at bay. (Also fish-oil and primrose oil helps with balancing the brain and lessening the effects of the stress PTSD causes me)

The only medication I have to use sometimes to be able to sleep is atarax, which is non-addictive(an allergy medicine really). But apart from that I'm actually much better off without medication. The only time I would consider going back on one is if I got a very deep depression: the non-PTSD kind of depression: the one that make it impossible to even get out of bed or eat or stuff like that: since depressions like that are really lethal! (I think Anthony explained it really well in his stress-cup-theory!) When I'm having a "PTSD-depression" it gets better if I take an atarax(and the anxiety is decreased).

But one year ago a psychiatrist at the trauma-center I was accepted to told me I would never make it without medication, he said that he could promise me that I wouldn't make it without one. And he wanted to put me on serequel.. Or some other anti-psychotic drug. ?? I refused. And he was wrong! :) :D

I'm crossing my fingers you get through this process without being forced to get back on the meds.

 

[zaniara]

Yeah, another thing: it's an industry!! They are making a lot of money from selling their medications, so of course they want you to use them, and of course they sometimes don't tell you about the side-effects. But I also think few doctors know for real how bad it can get, or how it feels. It happens that they lie to you as well. One example is that my psychiatrist said that the side-effects to anti-psychotic-drugs weren't that bad. But I've heard a doctor working with psychotic patients(teaching sometimes at the nursing school I attended) saying that the medications they have for that is really not that nice.. (They work for some, but they have a lot of side-effects for many people: more than SSRI has.) I could have respected him if he hadn't lied to me..

The next time a doctor tries to lie to me about stuff like this I will just ask the person if he/she has used/tried the medication him/herself, and if not, how on earth he/she can know anything at all about it! (I've tried at least 4-5 different ones, so I think I know a bit more about what I'm talking about.)

 

[MissMacD]

Thank you for all of your support and feed back. I see my doctor next week so I may see if I can get an referral to see a sleep specialist.

Today is better than yesterday. I was able to get to sleep with an immovane and a few mgs of ativan. I don't want this to be my life. Really just tired of being a guinea pig because medication has never worked long term for me and my doctor knows that.