kendall7858: Withdrawal Hell

[kendall7858]

Hi Altostrata and all at surviving antidepressants:

 

I am new to the forum but was recommended that I post here as I might gain some insight as to how to address the severe mishandling I have received at the hands of psychiatry. I have been to other boards and they say this is one of the best to address complex medication and withdrawal issues.I am currently suffering intractable burning muscle pain after having been in the hospital where they poly drugged me again.  I have tried changes in diet, epsom salt baths and excercise to no avail.   I would apprciate any insight as to what might be causing the situation.

 

Let me tell you a little of my story.  I have an 18 year history of being polydrugged by psychiatrists and I have been getting worse and worse.  I am in intractable pain from something they did to me in the psych hospital a month ago.I have had terrible insomnia and now do not sleep at all.  I have been on paxil, remeron, desipramine, doxepin, prozac, seroquel, zyprexa, klonopin, lorazepam, and temazepam as well as a few others.

My recent history is 4 psych admissions in the past two years.  I withdrew myself from desipramine, prozac, remeron, temazepam, at one point about three years ago without much problem. I stayed on seroquel for a lot of the time and was pretty stable on it for awhile.  Most recently, I have been really struggling.  I came off klonopin eight month ago and off temazepam shortly thereafter.  I was on seroquel and doxepin.  About 6 months ago a psychiatrist changed me to zyprexa while still on doxepin. Then my outpatient psych nurse changed me back to seroquel.  I was going around the clock 24/7 without sleep and I just got admitted to the hospital again.  This time I went from the frying pan into the fire.  I went in with 24/7 no sleep and came out with no sleep plus SEVERE intractable burning in my leg and back muscles.

What ever they did to me this time really is killing me.  They put me on latuda, lithium, klonopin, propanalol, and left seroquel.  I have this intractable pain from something they did. They also dropped 200 mg doxepin without a taper at all this time.  I quit the lithium and the latuda as soon as I got out of the hospital and now am on 100 mg seroquel, 1 mg klonopin, and 60 mg propanalol. I am terrified.  I am thinking that reinstating klonopin is causing the problems with pain.  I have been told that it is tolerance withdrawal.  I don't know because so many things have been changed but I am a mess. I have proceeded to withdraw from the klonopin 10% for two weeks, 5% for two weeks and another 5% cut starting the last two nights.  I haven't slept right for over a year and have been pretty much going 24/7 without sleep for 6 months now.  It is horrendous.  I am also wondering if the sleep problem could be causing the severe muscle pain but I am not sure.

I am in deep trouble and could end my life if it gets worse.  I went to the psych nurse the other day and she wanted to add doxepin back plus she offered gabapentin, but I am so damaged that I am afraid of the drugs and don't want to touch anything or add any complicating factors.  I don't think anyone can help me with this an I am suffering more than I ever have suffered in my life. It was stupid to reinstate the klonopin after 6 months but I was desperate for sleep and thought that it might help.  WRONG.  It was a bad decision.  I don't know if you folks or anyone can offer any insight as to what might have happened.  There are so may variables and I have been abused by the system.  Please, I desperately need help and wonder if I can ever get through this.  I know that there is a risk via the Beyond Meds website of severe iatrogenic illness from starting and stopping psych meds.

I have had too many people involved in my prescribing and I don't know how much more of this I can take.  I blame myself, but I have just been looking to the wrong people for help.  I am in serious trouble.  I need to sort this out. What makes it so hard is that it is difficult to turn the clock back and I don't even know what has cause this most acute symptom.  I feel like I can't trust anyone even myself.  It is such a mess because I have submitted to cold turkey of antipsychotics and doxepine recently and I have recently restarted klonpin which was bad mistake.  I know this is very complicated.  Thank you for your help and I hope that someone might have some suggestions.  I know that burning muscle pain can be a complication of protracted benzo tolerance/withdrawal.  Many others have it and are hoping for relief. 

Ken

 

[Altostrata]

Welcome, Ken.

 

I am sorry you've had to go through this.

 

It is possible the body pain you suffer is from going on and off drugs, not from any drug you're taking now. The nervous system isn't made of rubber, and it can get overstressed.

 

What is your daily symptom pattern relative to when you take your drugs? Keep notes on paper to track this over several days.

 

Please put ALL the drugs you take in the Drug Interactions Checker http://www.drugs.com/drug_interactions.html and post the results in this topic.
 

[kendall7858]

Hi Alto:

 

These are the drugs that I currently take and these are the interactions.  Like I said my system has been through a lot in the last 6 months with several doctors involved and they have not always communicated with each other.  It is hard to know what is going on but my severe symptoms started with the last hospitalization.  They have become worse over time (the last month) and they get worse throughout the day.  I take all my medications at night.  100 mg seroquel, 1 mg klonopin (reducing), and 60 mg propanalol.  Another factor is that while in the hospital the last time they immediately stopped 200 mg of the tricyclic antidepressant doxepin that I had been taking for two years. I also recently reinstated klonopin after going off it 8 months ago.  It is so hard to tell what is causing what given the complexity of what has been occuring.  I stopped zyprexa 15 mg about three months ago and was changed back to seroquel.  In the past I had taken seroquel 400 mg which used to work to help me sleep but now does nothing.  I know that it is common for sedating medications to lose their effect over time and that is the main reason I am in the trouble that I am in now. 

 

Propranolol and clonazePAM may have additive effects in lowering your blood pressure. You may experience headache, dizziness, lightheadedness, fainting, and/or changes in pulse or heart rate. These side effects are most likely to be seen at the beginning of treatment, following a dose increase, or when treatment is restarted after an interruption. Let your doctor know if you develop these symptoms and they do not go away after a few days or they become troublesome. Avoid driving or operating hazardous machinery until you know how the medications affect you, and use caution when getting up from a sitting or lying position. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

 

QUEtiapine and propranolol may have additive effects in lowering your blood pressure. You may experience headache, dizziness, lightheadedness, fainting, and/or changes in pulse or heart rate. These side effects are most likely to be seen at the beginning of treatment, following a dose increase, or when treatment is restarted after an interruption. Let your doctor know if you develop these symptoms and they do not go away after a few days or they become troublesome. Avoid driving or operating hazardous machinery until you know how the medications affect you, and use caution when getting up from a sitting or lying position. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

 

Using clonazePAM together with QUEtiapine may increase side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience some impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with these medications. Avoid driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

 

Food can enhance the levels of propranolol in your body. You shoud take propranolol at the same time each day, preferably with or immediately following meals. This will make it easier for your body to absorb the medication. Avoid drinking alcohol, which could increase drowsiness and dizziness while you are taking propranolol. Propranolol is only part of a complete program of treatment that also includes diet, exercise, and weight control. Follow your diet, medication, and exercise routines very closely.

 

My main symptom is the intractable pain and insomnia.  It is a deep burning in the muscles of my legs and back and gets worse toward the night.  After I take klonopin it gets a little less and I am somewhat more comfortable in the morning.  Please any insight would be most appreciated.  I know that a lot of people go through a terrible time with being on medications reaching tolerance or having withdrawal and being put on more medications to mask the side effects of the meds or tolerance/withdrawal.  It is so maddening that doctors absolutely don't know how to do a proper taper off medications.  I guess the question I ask myself is "what do I do now?" I am very hesitant to do anything for risk of making things even worse than they are.  I have started to eat a green smoothie diet and it has helped a little tiny bit but the burning is there all the time.  Like I said more in the afternoon and evening.  Thank you for your kindness and I would sincerely appreciate any insight.  I was referred here from a person I met on another medication support group online.  She said you were very good and had helped her when she withdrew of off several SSRI's along with benzodiazepines. God bless all of you and I hope to make it through.  I just want to stabilize without having to go to a doctor or back in the hospital. 

 

Ken

[LoveandLight]

Oh I'm soo sorry for what you've been through..it's awful.

 

But I'm so glad you've found this place. I hope you find relief soon.

[Altostrata]

Ken, it would help if you Please put your withdrawal history in your signature -- just the last few years would be enough.

 

At night, you're taking "100 mg seroquel, 1 mg klonopin (reducing), and 60 mg propanalol."

 

Were your doctors trying to clobber insomnia?

 

Taking too many "brakes" (as all your drugs are) can cause a paradoxical reaction -- instead of slowing down, the body revs up. That may be happening to you.

 

If I were you, I would hold the klonopin -- plan to come off that last -- and look at whether you can reduce Seroquel or propanalol. My guess is the propanalol can go first. See Tapering Beta Blockers or Alpha Blockers

[nz11]

Wow Ken i am so sorry you are in this difficult  situation.

 

Welcome. 

[kendall7858]

Hi Alto:

 

I am having difficulty finding the arrow next to my name in the right corner of the page so I can edit my history.  I am having trouble finding it. Thanks.

 

Ken

[Altostrata]

Look to the right of your name, there's a tiny downward arrow.

[JanCarol]

Wow, Ken.  You really have been through the wringer.

 

I've heard a lot of complaints in here with propanolol, and it's criminal that they didn't look at that when prescribing all those neuroleptics (we tend to not call them "atypical antipsychotics" - that's just their "marketing" term!)

 

Do you have high blood pressure?  Do you monitor it?  May I ask how old you are?

 

Alto's advice to start there is good.  

 

I just want to chime in my support - and welcome to SA!

[kendall7858]

Hi:

 

I don't have high blood pressure.   I have just been polydrugged by too many people for too long.  I would consider the propanalol as a taper but I don't know what to do about the horrible symptoms of burning neuropathic pain.  And yes, I have mostly been drugged to clobber insomnia. Now I don't sleep at all even on heavy sedation.  I am in Hell. I am nonfunctional.  I can't eat.  I am practically bedridden. The pain is horrific. I am sure something bad has happened to me.  Night after nigth of insomnia can't be helping much either.  I feel like I am dying.

 

Ken

[mammaP]

I can relate to the insomnia, I have chronic insomnia and it can be totally debilitating, 2.5 hours of sleep is heaven to me! I don't have the answer to that unfortunately, it has always been a problem for me but is worse when withdrawal hits.  I would listen to Alto and hold the klonopin as that can help with symptoms when tapering the other drugs. She has extensive knowledge of these drugs and will help you to get free in the safest way possible. 

 

I looked at the side effects list for propranolol and it is extensive, you will likely feel better when that one is out of the way. Often people feel better as the dose gets lower with many meds, I found that myself when I tapered a beta blocker.   

 

http://www.drugs.com/sfx/propranolol-side-effects.html

[Altostrata]

Ken, the pain is probably from nervous system dysregulation caused by the drugs. Changing the drug balance could affect this.

 

As you can see from your drug interactions, propanolol is in there complicating things. Given you're also taking Seroquel and Klonopin, my guess is propanolol isn't doing anything helpful. (However, you need to taper it to prevent blood pressure rebound.)

 

Acupuncture may help the pain. I had tingling pain in my arms and back that was stopped by acupuncture. See

 

Acupuncture

 

Non-drug techniques for dealing with physical pain

[kendall7858]

Hi Alto:

 

I just read that propanalol can cause toxic polyneuropathy which has symptoms of pain burning and muscle aches I don't know if I am grasping at staws but I found it mentioned on the internet.  It was one of the drugs used in my last hospitalization. Thank you.

 

Ken

[Altostrata]

See the link above about tapering propanolol. Please go slowly.

[kendall7858]

Hi Alto:

 

What is nervous system dysregulation and what are my chances of recovery?  I guess only time will tell.  Thank you.

 

Ken

[Katy91]

As someone who has suffered severe insomnia also resulting in pysch hospital admissions I believe that the lack of sleep causes muscle pain.  I was sleeping for maybe 3 hours a night and then eventually dropped into zero sleep for days.  I suffered terrible muscle pain, I couldn't walk for 10 minutes without being in pain and sweating.  I had back pain, leg pains, chest pain, neck and shoulder pains.  

 

The brain sends healing chemicals through the body when you sleep so this must not now be happening.  I have no science to back this up but it seems obvious if you don't sleep you're not properly relaxing your body so agonising muscle pain happens.

[Altostrata]

It's been shown that lack of sleep makes people more sensitive to pain. Sleep is healing.

 

Ken, please see What is withdrawal syndrome?

[kendall7858]

Hi Altostrata and All:

 

I know I have a complicated history and I am not sleeping much at all but the pain is intense.  I am very weak and lethargic. No energy.  I need to come off the medication slowly I know but I have a lot of frightening feelings that my brain is permanently damaged from all the psych meds and the changes.  I know that is a somewhat negative perspective because I know that many people do heal but it is just that it takes so long and I get impatient to the point where I end up in the doctor's office or the ER and the cycle begins all over again.  I have to stay away from the psychiatrists but it is hard to be patient.  Thank you for your input.  I need to sleep but can't.  I don't really know what to do at this point.  I am on klonopin and seroquel but they don't put me to sleep and haven't for a long time.  I am beginning to think that the medications are actually interfering with sleep at this point.  Very hard to know what to do.  Maybe I should just do nothing but this quality of life is not acceptable.

 

Ken

[Altostrata]

When do you take your drugs and what is your symptom pattern relative to when you take them?

[kendall7858]

Hi Altostrata:

 

There is no real pattern anymore.  I take all my medications at night and am able to relax a bit although I don't really sleep much.  I am in a semi conscious state for a few hours.  I have severe burning pain throughout the day and it is getting worse.  I can barely walk.  I don't know what has caused this but I merely get blown off my doctors as a psych patient who will not comply with medication (I was on 5).  I am running out of options and I don't want to go back into a psych hospital because I really feel I will die if I go back there.  I am running out of options.  I really have no idea what has caused this but this last hospitalization was truly an example of jumping out of the frying pan and into the fire.  I appreciate your position and you are trying to help. However, no real trends toward when I take my medications anymore.  It is just getting worse and worse each day.  I have really made a mess of my life.  I am trying to eat but I have no appetite, can't bath or take care of myself.  It truly is a crime.

 

Ken

[JanCarol]

Hey Ken, I'm sorry things are so difficult for you right now.

 

I don't think your current state is permanent.  I do believe you can get better, but it will take time, and careful work.  I'm still struggling with understanding your signature.  Are you off klonopin?  Just one month to taper off klonopin is very fast, especially considering your other drug changes at the time.

 

Yes, I think tapering the propanolol will lighten your load a lot, but please see the link about it that MammaP gave you.  She has experience in beta blockers, and there will be others on the thread who found they needed to taper it as well.  

 

Have you taken any Magnesium ?  It is excellent for pain control.  In your case, I especially recommend the magnesium bath, with epsom salts (up to 5 cups a bath!) or magnesium chloride (stronger, but harder to find).  Even a foot soak will help you asborb magnesium, and it is calming, muscle relaxing, and should help, even if just a little.  I have also heard good things about tart cherry for easing pain symptoms.  LIkely, nothing will eliminate the pain until you start lowering your drug load, but perhaps these can ease things off a little bit.

 

I have similar symptoms to you - for different reasons.  I move at a slow, snail's pace.  A crawl.  A small amount of activity and the pain might flare up for days.  However, I do sleep, even if it is not at night.  Insomnia can be scary, chronic insomnia can do all kinds of weird things to your nervous system.  You are probably so overloaded that your brain has forgotten what "normal" is, especially when it comes to sleep.

 

There's a whole rack of ideas around "sleep hygiene," - when to have light, when to have dark, when to have protein, when to have carbs, and a routine to follow to help you sleep in your bed.  Lots of people here wear blindfolds or have blackout curtains.  Some people won't even look at a computer screen or light or even a TV after 8 pm.  You will have to find what works for you.  It helps me to try and get some sunlight, or natural light (on cloudy days) every day, as early as I can.  Some people use a light box for the same effect.

 

Please let us know where you are in your journey, what you are doing, and how it's going.