shelley2
01-20-2008, 06:25 AM
Hello, I apologise for repeating myself with this thread as I have already posted it on the chronic pain board but am just getting used to how to use this system and how huge the membership is. i thought i should write my story here and perhaps gain some support, advise etc.
Hello, my name is Shelley and heres my story. Im 38 years old and was working as a full time teacher with no medical conditions except for lower back pain and a tight muscle in my neck called a torticollis which i have had for twenty years.
Last year (April 2007) I went to the doctor with a painful blocked ear. After attempts to unblock the ear etc it then resulted in an electric shock type pain going across my teeth and to the other ear as my inner ear had become inflamed. This then resulted in my tongue and face tightening in response to the pain so the doc put me on baclofen. Prior to this my only health problems were a painful lower back and a torticollis, both of which Ive had for 20 years and managed through physiotherapy. I was living a normal healthy life, on no medication as a busy school teacher, living alone and was meant to be getting married this christmas gone.
When I first went on baclofen I took 10mg and then another 10mg. The next day the painful face melted away and so did my back pain and torticollis pain. However the day after my arms started to burn so I then reduced my dosage to 5mg. I stayed on the 5mg for about two weeks before I had to go and see my neuro. By then my pain in my ear had stopped and the inflammation had gone down.
My neuro told me there was no need to wean off the Baclofen and that i would be fine coming off the 5mg. I trusted him and just came off it.
Three days later i began violently retching with an extreme sensation of nausea. The retching was not gastro intestinal but from the sides of my body. My stomach was also very touch sensitive as was the rest of my body. For two weeks the medical proffession were baffled. I kept telling them that it was because of the Baclofen but they kept dismissing it. After two weeks of retching I was rushed to hospital where finally a doctor said that this was most definately Balofen withdrawal syndrome and that I was to go back on 5mg.
As soon as I went back on the Baclofen the retching stopped but my intestines opened and all my contents came flooding out.
I felt so ill but had stabalized none the less. the doctor then told me to wean off 1mg a week. Four days later i started doing this..well someone opened the doors of hell and threw me in and locked the door. i suffered horrendously with EXTREME NAUSEA. (you have to experience it to believe it.) I felt sick all over my body but it wasnt Gastro-intestinal. I could retch one minute then eat the next. My whole body became touch sensitive..if you touched me anywhere I would retch. i had wavy movements inside my body and crawling sensations inside and I thought the retching was going to kill me.
2 months later the weaning off process stopped and I had suffered so much withdrawal and thought it would be over and I would go back to normal as everyone kept telling me... I WAS WRONG.
Three days after coming off baclofen for the second time I began bleeding. I bled for 40 days. I had swinging sensations inside me like I was swinging on a hammock. In the end my parents couldnt cope and called an ambulance. I was rushed to hospital where they were very thorough and checked every part of me and then sent me home..At least nothing else was wrong!
My list of withdrawal symptoms which continued and to date are extreme nausea on one side of my torso which swaps sides sometimes
crawling sensations through my teeth, head and back like snakes crawling through my body.
a feeling of someone poking hot pins into my skin
a feeling of being car sick even though Im still
vertigo type symptoms
muscle spasms
violent and aggressive retching where I needed to be held down
burning sensations in my throat and ears
Problems with digestion
my whole body tingling
cold hands and feet
clenching jaw
a feeling of vibration and buzzing inside me
eyes twitching
body temperature change.
urine dsicolouration
nightmares
hallucinations
vivid dreams
a feeling like Im recovering from flu
sharp shooting nerve pains
a feeling of the wheel of a steam train rotating inside me
a feeling of being spaced out
muscle weakness on my right side compared to my left
thoughts of impending doom(I told everyone I only had a year left to live and started preparing for my funeral)
There is more than this but my current problems 5 months off the drug are
my muscles have not gone back to normal-My torticollis and lower back pain has not returned but I get other spasms instead ie like a rebound spacticity. (baclofen can cause you to have more aches and pains..its a bit deceptive in that it can also cause pain if you are in tolerance to the drug or withdrawal and so you take more)
urine discolouration
a feeling of inner rotation- like the wheel of a train is going round and round inside me
nausea on my right side of my torso but not as bad as it used to be
poor digestion like my intestines are asleep and dont want to work properly. (There are GABA receptors in the intestines too which is causing this)
my jaw is clenching.
voices in my head all night even though Im asleep
always feeling hungry even though Ive just eaten.
Symptoms change all the time and I can manage during the day on my own now after 5 months but it has been hard. My well being has improved BUT Im still suffereing. If anyone can relate to any of this list..be it small please get in touch and tell me what the symptom was, did you recover and how long did it take for the symptom to go away?
my neuro says im suffering from baclofen withdrawal syndrome and central nervous system malfunction but is only guessing that I will recover as she has no knowledge of others who suffered in this way.
My biggest question is- Will my back pain and torticollis pain return(Iwant it to) and my muscles and normal body return.
I went to the doc with one problem and I got at least 30 back in return
If anyone has any withdrawl symptoms from any drug can you please list them and describe how long it took for the withdrawl symptoms to go. Sometimes withdrawal symptoms can mimic other conditions so remember sometimes you can be misdiagnosed and be put on another drug to counteract the withdrawal symptom and thus it becomes a vicious circle and you never know if your symptom is a condition or just a withdrawl symptom.
Also you may not suffer from withdrawl of baclofen if ou are on another medication that also goes through the cns and may have only have had only a few symptoms so please list them anyway..
Any input gratefully recieved. God Bless
Shelley
Hello, my name is Shelley and heres my story. Im 38 years old and was working as a full time teacher with no medical conditions except for lower back pain and a tight muscle in my neck called a torticollis which i have had for twenty years.
Last year (April 2007) I went to the doctor with a painful blocked ear. After attempts to unblock the ear etc it then resulted in an electric shock type pain going across my teeth and to the other ear as my inner ear had become inflamed. This then resulted in my tongue and face tightening in response to the pain so the doc put me on baclofen. Prior to this my only health problems were a painful lower back and a torticollis, both of which Ive had for 20 years and managed through physiotherapy. I was living a normal healthy life, on no medication as a busy school teacher, living alone and was meant to be getting married this christmas gone.
When I first went on baclofen I took 10mg and then another 10mg. The next day the painful face melted away and so did my back pain and torticollis pain. However the day after my arms started to burn so I then reduced my dosage to 5mg. I stayed on the 5mg for about two weeks before I had to go and see my neuro. By then my pain in my ear had stopped and the inflammation had gone down.
My neuro told me there was no need to wean off the Baclofen and that i would be fine coming off the 5mg. I trusted him and just came off it.
Three days later i began violently retching with an extreme sensation of nausea. The retching was not gastro intestinal but from the sides of my body. My stomach was also very touch sensitive as was the rest of my body. For two weeks the medical proffession were baffled. I kept telling them that it was because of the Baclofen but they kept dismissing it. After two weeks of retching I was rushed to hospital where finally a doctor said that this was most definately Balofen withdrawal syndrome and that I was to go back on 5mg.
As soon as I went back on the Baclofen the retching stopped but my intestines opened and all my contents came flooding out.
I felt so ill but had stabalized none the less. the doctor then told me to wean off 1mg a week. Four days later i started doing this..well someone opened the doors of hell and threw me in and locked the door. i suffered horrendously with EXTREME NAUSEA. (you have to experience it to believe it.) I felt sick all over my body but it wasnt Gastro-intestinal. I could retch one minute then eat the next. My whole body became touch sensitive..if you touched me anywhere I would retch. i had wavy movements inside my body and crawling sensations inside and I thought the retching was going to kill me.
2 months later the weaning off process stopped and I had suffered so much withdrawal and thought it would be over and I would go back to normal as everyone kept telling me... I WAS WRONG.
Three days after coming off baclofen for the second time I began bleeding. I bled for 40 days. I had swinging sensations inside me like I was swinging on a hammock. In the end my parents couldnt cope and called an ambulance. I was rushed to hospital where they were very thorough and checked every part of me and then sent me home..At least nothing else was wrong!
My list of withdrawal symptoms which continued and to date are extreme nausea on one side of my torso which swaps sides sometimes
crawling sensations through my teeth, head and back like snakes crawling through my body.
a feeling of someone poking hot pins into my skin
a feeling of being car sick even though Im still
vertigo type symptoms
muscle spasms
violent and aggressive retching where I needed to be held down
burning sensations in my throat and ears
Problems with digestion
my whole body tingling
cold hands and feet
clenching jaw
a feeling of vibration and buzzing inside me
eyes twitching
body temperature change.
urine dsicolouration
nightmares
hallucinations
vivid dreams
a feeling like Im recovering from flu
sharp shooting nerve pains
a feeling of the wheel of a steam train rotating inside me
a feeling of being spaced out
muscle weakness on my right side compared to my left
thoughts of impending doom(I told everyone I only had a year left to live and started preparing for my funeral)
There is more than this but my current problems 5 months off the drug are
my muscles have not gone back to normal-My torticollis and lower back pain has not returned but I get other spasms instead ie like a rebound spacticity. (baclofen can cause you to have more aches and pains..its a bit deceptive in that it can also cause pain if you are in tolerance to the drug or withdrawal and so you take more)
urine discolouration
a feeling of inner rotation- like the wheel of a train is going round and round inside me
nausea on my right side of my torso but not as bad as it used to be
poor digestion like my intestines are asleep and dont want to work properly. (There are GABA receptors in the intestines too which is causing this)
my jaw is clenching.
voices in my head all night even though Im asleep
always feeling hungry even though Ive just eaten.
Symptoms change all the time and I can manage during the day on my own now after 5 months but it has been hard. My well being has improved BUT Im still suffereing. If anyone can relate to any of this list..be it small please get in touch and tell me what the symptom was, did you recover and how long did it take for the symptom to go away?
my neuro says im suffering from baclofen withdrawal syndrome and central nervous system malfunction but is only guessing that I will recover as she has no knowledge of others who suffered in this way.
My biggest question is- Will my back pain and torticollis pain return(Iwant it to) and my muscles and normal body return.
I went to the doc with one problem and I got at least 30 back in return
If anyone has any withdrawl symptoms from any drug can you please list them and describe how long it took for the withdrawl symptoms to go. Sometimes withdrawal symptoms can mimic other conditions so remember sometimes you can be misdiagnosed and be put on another drug to counteract the withdrawal symptom and thus it becomes a vicious circle and you never know if your symptom is a condition or just a withdrawl symptom.
Also you may not suffer from withdrawl of baclofen if ou are on another medication that also goes through the cns and may have only have had only a few symptoms so please list them anyway..
Any input gratefully recieved. God Bless
Shelley