Author Topic: Seroquel Support Group  (Read 32183 times)

[Buddie]

Re: Seroquel Support Group
« Reply #20 on: August 22, 2016, 10:28:04 pm »
[...]

Sorry to hear about your tough disappointing appointment with your doctor today. I know that feeling. My doctor is very much the same so I have really had to get more informed about my own condition and mental health. I can see tbat she is there just to write a prescription for me if I need it and thats pretty much it. Small talk after that. As for  your doc encouraging you to take more meds .... that is so harsh. You know better right ?

Yes it is such a lonely journey but you are not alone. I am so grateful that someone like you reads and responds to my posts because you know what pain is like. It so hard for others to understand as its such an invisible illness. You are not alone here.

The neuropathy I have appeared to come on after I had been on many meds so I honestly don't know which one brought it on. I do know that I had been tapering Xanax and Lamictal at that time in January 2014.
Its a burning pinprick sensation that had mostly been on my left back and left leg for over two years.  My leg would go quite numb and a general feeling of weakness. Since I began tapering off the Seroquel , especially as I got lower , it has gotten worse and has moved. It can become very nervey in nature. It can stab , prickle , tingle , burn anywhere .  Today was not too bad but then again  my muscles are in knots so I cannot win. Recently ,  I have been diagnosed with Piriformis myofascial pain and Lumbar Facet Arthropathy. ( I went to see a Pain consultant )  Basically a glute muscle injury and facet joint degenerative changes . I firmly believe that it is due to the medications in part.. My muscles and nerves just became so overwhelmed.

Yes I did see on another thread that you got help with your water titration .This is great. :thumbsup:

Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Seroquel Support Group
« Reply #21 on: August 22, 2016, 11:57:30 pm »
Hi [...]

No I am not on benzos. I am 15 months off benzos today.  :)  is the ticker I put on showing this. Hope so  ?

I was crossed ( badly ) over from Xanax to Valium in early 2015. I was in an awfully bad way at that time. After all the previous meds and ct from Cymbalta.  One drug after another. It really messes with a person's head , heart and soul doesn't it ?   ???

I did as best as I could with the Valium taper but I went on Seroquel as I just couldn't sleep.  So I have now tapered the Seroquel.

You may not have trouble with Seroquel [...]. None of these meds are easily tapered . I had pretty awful nightmares on Seroquel and as I got lower they started to ease up and my sleep became less broken .I stopped roaming to the kitchen for a snack or two.. Benzos for me were the beasts. The beast of all beasts.  Those doctors sure have a lot to answer for. I used to get sooooo angry in 2014 especially.  I stomped around raging at the world in my bedroom. I had to let this anger go or it would eat me up inside. I took control of my medications and my doctor knew I was aware and well capable . I read and understood my meds well enough at that stage so I was able to make informed decisions .

Please do not let your doctor yell at you [...].  They are there to help , one hopes . And it is for you so expensive so make sure he listens to you.  :smitten:

Hi:

Nice t see you are off both meds. I wish I were you. I was only joking about my pdoc. He doesn't yell. At worst, when he's mad at me, he stares, as he now knows me to be a bit odd. Anyway, I went for my appointment today and it was not for today. It is for next week! He just laughed when I knocked on his door and said, [...], you're brain is fried. I had to agree with him on that one. My K taper went easy as pie and so far, so good with Valium, but once I tried cutting just a slice of the Q I could not sleep for 7 days and paced all night. After that week of hell, I reinstated so here I am! If you only knew my pdoc you would wish you were his patient. Yes, he's that good. I would not trade him for all of the gold in Fort Knox.

My original provider who put me on 10 mg of K and when I asked her to taper me off it, she said she did not know how to and besides, I could use even more. That made me as mad as you got.  I hope we follow the UK and begin to sue those lousy ones. I bet the FDA can't be sued.

[...] :)
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Seroquel Support Group
« Reply #22 on: August 23, 2016, 12:03:22 am »
Well, I think volunteering to give away my Xanax would be a little bit illegal if I were serious about it. ;)

You're right. But I suspect this is a common occurrence. Even my so called friends who know I am tapering offer me Xanax. They are no longer my friends......... ::) I'll hang out with people who don't think benzos are good. If I can find them, that is.

Yes, that is quite a hard thing to find, isn't it? 

Had a disappointing visit with my doctor today who thinks my symptoms are psychosomatic. She seems to believe I need to be on all these meds because of stress and anxiety and my w/d symptoms need to be treated with therapy. She encouraged me to take more meds, not less. I guess I should be grateful that she writes the scripts so I don't need to worry about a forced rapid taper. But somehow, this sort of thing gets me down. Really wears on me. This journey would be so much easier if it weren't so lonely.

I really hate it when people say this. Nobody has ever said this to me or else they get a boot print on their arse. My feeling about that is they say it because they don't have an answer and are clueless in general. They are not worth your time and money. And medical schools seem to get worse every year. It's the vets who are smart, as it is much harder to get into vet school than medical school. If you have an animal, just check your last bill. ::)
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Seroquel Support Group
« Reply #23 on: August 23, 2016, 02:39:40 am »
[...]

Sorry to hear about your tough disappointing appointment with your doctor today. I know that feeling. My doctor is very much the same so I have really had to get more informed about my own condition and mental health. I can see tbat she is there just to write a prescription for me if I need it and thats pretty much it. Small talk after that. As for  your doc encouraging you to take more meds .... that is so harsh. You know better right ?

Yes it is such a lonely journey but you are not alone. I am so grateful that someone like you reads and responds to my posts because you know what pain is like. It so hard for others to understand as its such an invisible illness. You are not alone here.

The neuropathy I have appeared to come on after I had been on many meds so I honestly don't know which one brought it on. I do know that I had been tapering Xanax and Lamictal at that time in January 2014.
Its a burning pinprick sensation that had mostly been on my left back and left leg for over two years.  My leg would go quite numb and a general feeling of weakness. Since I began tapering off the Seroquel , especially as I got lower , it has gotten worse and has moved. It can become very nervey in nature. It can stab , prickle , tingle , burn anywhere .  Today was not too bad but then again  my muscles are in knots so I cannot win. Recently ,  I have been diagnosed with Piriformis myofascial pain and Lumbar Facet Arthropathy. ( I went to see a Pain consultant )  Basically a glute muscle injury and facet joint degenerative changes . I firmly believe that it is due to the medications in part.. My muscles and nerves just became so overwhelmed.

Yes I did see on another thread that you got help with your water titration .This is great. :thumbsup:

Rose, those nerve pains sound just like mine. I have found when explaining my pain and how it affects me to regular people, if I say it's something like fibromyalgia (which it really isn't) they at least get that it is invisible and exhausting. Seems like fibro is becoming more and more known, so I find more and more people who get the invisible illness and pain part of it. Doctor's, though, that's different story! I think they just are taught to never admit they don't understand something so they have to act like they do and make something up.

I have all my equipment for water titration now and hope to try it tomorrow after I practice a bit with plain water. Wish me luck!

[...] :smitten:
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Seroquel Support Group
« Reply #24 on: August 23, 2016, 02:41:32 am »
[...], have you ever considered liquid titration so you can make teeny tiny cuts?

[...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Seroquel Support Group
« Reply #25 on: August 23, 2016, 11:46:42 am »
[...]

Oh I am really pleased that you do get on well with your doctor. It does make for easier living and not feeling stressed having to attend the appointments. My pdoc is a very calm lady. So calm indeed that she would nearly fall over .  :laugh:  . Still , she has a way about her and I am not frustrated by it so its helpful in my recovery. Poor dear , you turned up a week earlier for your appointment.  Better than a week late.  ;) I am from Ireland and the mental health services are getting slightly better but its still a problem. Budget cuts and lack of services especially counselling.

[...] suggested a great idea for your Seroquel taper. How about a water titration. ??  Might be worth a try.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Seroquel Support Group
« Reply #26 on: August 23, 2016, 11:59:46 am »
[...]

My GP has already suggested that I have Fibromyalgia.  Imagine that !!! . In 2014 I was sent to Rheumatology services and the doctor stated No I did not have it. He felt that " it may be due to the wide variety of medications that this lady has/is being prescribed "  ←  this is more likely the case.  Two years later , I continue with this pain and she has again referred me to Rheumatology for a second time. I am waiting for the appointment since  last December 2015. I feel that I have been for every test and scan in the book.

I agree - doctors really do not like to admit they don't have the answers. They are definitely lost when it comes to withdrawal and the shocking long lasting impression and symptoms that it leaves behind.

I really hope you get to grips with the water titration.  It sounds like a good plan. Lots and lots of good luck . 

:thumbsup: :smitten:
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Seroquel Support Group
« Reply #27 on: August 23, 2016, 12:46:58 pm »
Wow, Rose, I am so impressed that your rheumatologist actually believes meds can cause these problems!  I had a neurologist many years ago say he had seen psych meds cause neurological damage (after my psychiatrist denied it could be the drug). So there are a few doctors out there with something between their ears!

Plan to start the liquid tonight but am nervous even typing that! ::) It's either cut more pills or do the liquid, so I guess it's time to get un-frozen and do something. Darn meds! :tickedoff:
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Seroquel Support Group
« Reply #28 on: August 23, 2016, 01:16:23 pm »
Rose and [...]:

I'm actually scared to try tritation. I never did figure it out correctly. Like it makes no sense to me (for Valium) that you put in 1 mg into 2 ml of milk, then take out .25 ml, drink it and save the rest. WTH is that all about?. Seems like you'll be dropping 1 mg per day.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Seroquel Support Group
« Reply #29 on: August 23, 2016, 01:47:17 pm »
Rose and [...]:

I'm actually scared to try tritation. I never did figure it out correctly. Like it makes no sense to me (for Valium) that you put in 1 mg into 2 ml of milk, then take out .25 ml, drink it and save the rest. WTH is that all about?. Seems like you'll be dropping 1 mg per day.

[...], I think you have the numbers wrong. You would use at the very least 50ml of milk, 100ml would be better. Even 200ml. You want a very dilute solution.  The math guys on Microtapering thread will give you accurate numbers and even work out a whole titration plan for you. builder is there now. SG is usually there, too, but seems to be away right now. I call them the math gurus. They worked it all out for me when I was a confused, scared mess.

I have done my Librium taper by dissolving the capsule in 2ml of 80 proof vodka (then I have the L in solution so it will not settle out and I can see it more clearly than in milk) and then adding 98ml water to make 100ml of solution. Then every day I would remove a small part and pitch it out and drink the rest. I haven't tapered the L in awhile, so I'll just guess-timate my numbers. Day one:remove 2/10ml. Day two:remove 4/10ml. Day three:remove 6/10ml. So you can see I am reducing my dose my 2/10ml each day (the smallest marking on my syringe) from a total of 100ml. That is a very small cut. The math guys over on the micro-taper thread worked it out for me because I couldn't figure it out. builder and SG are very, very patient with people who ask the same questions again and again (like me).

With Q, it will not dissolve, so you have to make a suspension and shake it up and draw out quickly before the particles settle, but it's the same idea. Use a lot of liquid. The more dilute the liquid, the less little mistakes matter because there is so little med in the mistake. Anne, also on MT sometimes, uses a suspension successfully.

Hope that was helpful and not confusing!

[...] :smitten:
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.