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Oral Baclofen Withdrawal Syndrome




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#1 sandy222

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Posted 15 January 2008 - 03:05 PM

Hello, i was wondering if anyone has had oral baclofen and had problems coming off it. I have suffered horrendously with withdrawal syndrome which has been going on for the last 5 months. I came off it 5 months ago. The hospital and my doc have tried putting me back on it but i suffered even more and suffered so many withdrawal problems coming off it the second time. is it just a matter of time before everything goes back to normal? i have improved but I still am frightened as my normal aches and pains that i used to get have not returned and Ive got rebound spacticity instead. Any input or help on this would be most appreciated of any problems anyone experienecd with the oral baclofen. Many Thanks.

#2 darrel

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Posted 15 January 2008 - 03:39 PM

Hello, i was wondering if anyone has had oral baclofen and had problems coming off it. I have suffered horrendously with withdrawal syndrome which has been going on for the last 5 months. I came off it 5 months ago. The hospital and my doc have tried putting me back on it but i suffered even more and suffered so many withdrawal problems coming off it the second time. is it just a matter of time before everything goes back to normal? i have improved but I still am frightened as my normal aches and pains that i used to get have not returned and Ive got rebound spacticity instead. Any input or help on this would be most appreciated of any problems anyone experienecd with the oral baclofen. Many Thanks.


I was wondering how they backed you off of it, I dropped my dosage by one pill every three days and then also the spacing (from 4 times a day to three and then two and so on) but at the same time I started taking dantrolene which seemed to work a lot better than oral baclofen. are you now taking anything for the spasms or spasticity?

I know that It seemed that the less I was taking the fewer spasms I had but they were strong ones, as in knees pulling up to the chest and arching the back strong.( it almost looked like I had turrets)

#3 sandy222

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Posted 15 January 2008 - 04:53 PM

hi they didnt bother. My neuro said it would be ok for me to just come off i and that I would be fine. I had only been on it two and a half weeks and dropped down to 5mg. he told me to cold turkey off the 5 mg. I was rushed to hospital 3 days later with violent retching. Eventually baclofen was restarted and I suffered with 30 withdrawal symptoms from hallucinations to muscle spacticity and I had menstrual,bleeding for 40 days. It has been 5 months since i came off baclofen the second time and am still suffering from withdrawal symptoms although not as severe..my intestines are still asleep...ie not digesting properly, I have vertigo type symptoms and my muscles are still not back to the way they were. I have vivid dreams and tingling sensations and now have problems with my jaw.x

#4 darrel

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Posted 15 January 2008 - 08:38 PM

dropping just 5mg is not that much you should not have had any with drawl from that, now if you were at 90-130 mg/ day yes you would have serious with drawl. but 5 mg is nothing. I would say you had something else wrong..you would not have hallucinations on with drawl of baclofen you would have serious spasms that would be terrible. now overdose you have nausea and hallucinations.

oops had dantrolene dosage up there not baclofen..sorry

Edited by darrel, 19 January 2008 - 01:27 AM.


#5 kewlcatkez

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Posted 15 January 2008 - 10:43 PM

dropping just 5mg is not that much you should not have had any with drawl from that, now if you were at 400-700 mg/ day yes you would have serious with drawl. but 5 mg is nothing. I would say you had something else wrong..you would not have hallucinations on with drawl of baclofen you would have serious spasms that would be terrible. now overdose you have nausea and hallucinations.



Hi,

I Have to say that I agree with Darrel on this one. Of course we can't say that 5mg will *never* cause hallucinations and increased spasticity when stopped abruptly, but in someone who was on a higher dosage than that, it would be very unlikely, as you would have experienced the symptoms early in the decreased regimen. That is why they do that. It is also why they give test dosages of this drug and many others.

Also the cessation of the symptoms when *eventually* reinstated on the 5mg dose, could be a coincidence. As you say eventually, it appears to suggest that a few days ellapsed. If this is the case, whatever else may have caused these symptoms may have abated/disappeared by that time. It could also be that you were reassured when the Baclofen was reinstated, and this may have had a placebo effect psychologically ( not something you would be able to control).

Other causes of prolonged Menstrual bleeding are Thyroid issues ( hypo), anaemia, fibroids, anxiety...to name a few..

The addition of Hallucinations also suggest severe Infection as a possible cause. Of course, anxiety and stress of the situation can also lead to Hallucinations. Were they Visual, smell or Audible?

Also, did you change anything about your other medications at the time? Is it possible you took the wrong dosage of a medication? etc, are all questions which may shed some light on the situation.

I have nursed people who have been severely anaemic and as a result have been Hallucinating. Hallucinations are often a psychological manifestation of a physical or Biochemical situation.

The fact that you had some spasms and pain also tie in with the cause being something like Anaemia, hypertension and so on etc.

Also, I have no idea what level of injury you have, but these symptoms can also be manifestations of Autonomic Dysreflexia. Hallucinations are often present with severe Hypertension - a feature of AD (and like stated before with other imbalances when at extreme such as Anaemia, Hyperthyroid and severe hypothyroid, hypoglycaemia etc). You need to be asking your drs for an explanation for the symptoms you have had. Did they do any blood work ( I would certainly think so with these symptoms) did they obtain an ECG ( EKG in the USA), a urine Sample for C&S and other baseline vital sign measurements? If so you need to see if there was a deviation from the 'normal' for you at the time when you experienced these symptoms. You also need to recall if you were taking any other medications, drugs ( recreational and prescribed) and wether there are other factors such as is there are suggestion that you may have any other condition ( such as so called petite mal Seizures etc) . Is your ability to maintain your body temperature compromised ( if higher injury especially) etc - all these may have an impact on the symptoms you describe.

This even goes as far as people who have neglected their bowel program can become very unwell due to the build up of toxins etc etc. as I am sure you are aware.

Do not underestimate the fact that Anxiety and stress pertaining to a situation can have a huge impact on it for some people. I have known people who have been incredibly unwell due to an illness stemming from a psychological condition. I am not saying that this is the case with you, but as you are probably aware of the requirement to decrease drugs slowly, a bit at a time, it is possible that anxiety can lead to over examination and notice of symptoms and then anxiety and then a never ending cycle is started. This can occur with few or no outward signs of Anxiety or stress.

Ultimately, as I mentioned earlier in the post, it is rare but still possible to have an extreme reaction to just 5 mg. However this would be rare seeing that you were taking a higher dose, with not such a severe reaction ( or how else would you notice it with a lower dose). If you are still concerned that this is the case, your dr needs to submit a report to the FDA in the USA and the MHRA in the UK or your countries Medicines control agency if outside these countries so that it can be considered and lessons if any can be learned.

Lastly, please DO get your drs to go over the tests you may have had and be sure to keep a log of all subsequent symptoms ( if any) so that a pattern may be determined. It may well be linked to AD or Severe infection somewhere where you have reduced sensation etc - just as readily if not more so than due to a very small amount of Baclofen.

Good luck!


Take care,

K


edited typos

Edited by kewlcatkez, 15 January 2008 - 10:47 PM.

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#6 sandy222

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Posted 16 January 2008 - 09:04 AM

Hello, my name is Sandy and heres my story

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.

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.

Many Thanks for listening.

Sandy

#7 sandy222

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Posted 16 January 2008 - 11:14 AM

hello, thankyou for your very detailed responses. Unfortunately i have had all the tests mentioned done and the neuro is convinced that i suffered from the withdrawal..even though it was a small dosage I was just very sensitive to the drug and my brain is going to take some time to go back to normal. Ive been tested so many times and even my doc now agrees that it is all related to baclofen. Ive had a spinal scan, a brain scan, three lots of blood work, chest x-ray, been seen by a gastro and three neuros have checked me over.The drug company are investigating it at the moment as all of my symptoms are related to the action of the drug and what it does to the gaba receptors in the brain. Im on no other medication and never have been in my life and have no existing medical conditions. The fact that the symptoms come and go in wave like occurances is a sign to the medics that it is linked to a withdrawal syndrome. The symptoms are worse in the morning to the evening which has also given them insight into it. My new neuro says that i should have been weaned off the 5mg in the first place as I was so sensitive to the drug and despite me telling my last neuro i was sensitive to it, he didnt listen. I have found someone on another site who has also experienecd the same a s me and was in hopital for 4 months and am waiting for him to return a message to me. Ive read up about it and it does say that dependency to the drug and dosage is not always an indicator to how affective it is. i felt the effects of the drug within a day of taking my first dosage. All my aches and pains went within a day..I have suffered from back ache and torticollis pain for 20 years which demanded physiotherapy every day and within the same day the pain went. It still hasnt returned and my torticollis is a permanent condition.x

They said Im a very very rare case. It has all been reported to the drugs regulation authority in the uk and two drug companies are involved at the moment in investigating the whole process and my long term prognosis....and its taking a looong time for them to sya what that is. They are the ones who hold all the records of other people. I do know that all my symptoms have been reported before and my neuro says that i was, although not now was suffering from delirium and central nervous system malfunction caused by the drug...But this is rare and only happens if your not weaned off. If you are on another muscle relaaxant too at the same time this cannot happen but because I was on nothing else it was like a cold turkey effect.

Thankyou so much for your response and support and all taking the time to write back to me. God Bless You.xxxxxx

Edited by sandy222, 16 January 2008 - 11:24 AM.


#8 kewlcatkez

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Posted 16 January 2008 - 12:38 PM

They said Im a very very rare case. It has all been reported to the drugs regulation authority in the uk and two drug companies are involved at the moment in investigating the whole process and my long term prognosis....and its taking a looong time for them to sya what that is. They are the ones who hold all the records of other people. I do know that all my symptoms have been reported before and my neuro says that i was, although not now was suffering from delirium and central nervous system malfunction caused by the drug...But this is rare and only happens if your not weaned off. If you are on another muscle relaaxant too at the same time this cannot happen but because I was on nothing else it was like a cold turkey effect.

Thankyou so much for your response and support and all taking the time to write back to me. God Bless You.xxxxxx



Hi,

If this is the case, then I would say that they probably don't know the answers as to how long it will affect you etc...As they go off normal occurance and a range of response, and yours is clearly not the regular response.

I have one q though, if you are so very sensitive, how come you could tolerate higher doses? as such sensitization would result in very unwell at high doses .unless this is an ALLERGIC response??
( which would IMHO fit the things you describe and the dosage you were on more than the sensitive theory).

Have you seen a copy of the Neurologists report to your dr? If not obtain a copy as if this was me I would like to know what they are saying between the lines. Sorry if this is harsh, but it sounds like they are giving you lip service...especially since they aren't jumping over you to get back to you or wanting to write a thesis on it ( being a rare event).

Yes, I am very aware of drugs affecting people at small dosages, but thats what makes me question the drs explanation, as if you were very sensitive to coming off 5mg Baclofen, higher dosages would have seen more severe problems and dropping say from 10 to 5mg when you were titrating down would also have been a nightmare and would have meant that he would not have advised you to just come off the 5 mg. I hope this makes sense.

I do hope that you do resolve the situation and are able to get on with your life.

Take care,

K

Edited by kewlcatkez, 16 January 2008 - 12:40 PM.

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#9 kewlcatkez

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Posted 16 January 2008 - 01:31 PM

Hello,

As you have already posted about this in another area of the forum, I doubt that you are going to get any more replies than the ones which the others gave you in that one.

You write:

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.


With all due respect, if a dr who is an expert in Neurological issues has no idea, then I doubt that you aree going to get a definitive answer from people who are perhaps not Neurologists. Of Course you may ( as you have previously on same subject) get others experiences, but I suspect this will not be what you need, since you understandably wish to have a concrete answer. Sadly, not a lot in biology and Medicine is ever truly definite.

As this is a reportedly rare disorder I would think that people experiencing it will be difficult to find. Please see the previous thread where people who had experience taking Baclofen shared their experiences. Also please search the whole section Simon has provided. Reposting in several areas of the same board is a bit of a no no I think..( understandably b/c it clutters the board etc)

In regards to if the back pain and Torticollis will return, I am at a loss as to why you would wish for it to return? I can understand that you wish the side effects to abate, but find it a little odd ( sorry of this sounds harsh) that you wish pain to return. As a person who has chronic pain, I can't see myself wanting it back if it was to go..Of course I wouldn't want the Hallucinations etc..

Have you tried posting on Tortiollis suppport groups for others with the same concerns? If back pain and Torticollis are your main problems ( or were) and now the side effects, it may be of benefit for you to go to an area where which is more targeted so to speak, re your concerns.

Best wishes for the recovery which you desire ( ?returning pain?, and stopped Hallucinations)

Take care,

K

Edited by kewlcatkez, 16 January 2008 - 01:33 PM.

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Connective tissue disorder & associated paralysis.

#10 kewlcatkez

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Posted 16 January 2008 - 01:41 PM

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



Hello,

As you are still experiencing severe psychological problems which either do or do not stem from the Baclofen, then I would suggest that as the Neuros have told you there is nothing to do but wait and see, that you seek a Counsellor or Psychiatrist. Many of the symptoms you list must be difficult to live with and if only to control symptoms you will probably benefit from such consultations.

If I am completely honest, As a RN the people I saw with such severe dependencies on drugs and severe reactions never were suffering 5 months later ( unless it was a slow release drug/depot). It seems very likely that you did have an unusual rare reaction, but that this has led to a prolonged symptom collection as your body is basically unable to reset itself ( I have seen this occur intermittently in individuals). It is a similar etiology as Chronic Pain syndromes which cause hyper sensitization and vicious cycles etc..

Also, the main points to note about your symptoms is that the hallucinations aside, they are all ambiguous and could be the result of something or nothing. Therefore its difficult to know if ALL of the things you are experiencing are b/c of the same root cause. So that further complicates things and as an effect onto whether drs feel there is a time frame they can give you, to when you will recover. Could it be a post traumatic stress from the initial side effetcs??

This is all guess work though. I am no Neurologist. In fact No one here no matter how qualified professionally or through life experience, will be able to give you the answers you seek so desperately as none have your notes, history and the benefit of examining you etc. That is why I suggest that you seek the opinion or a second or third opinion of a Neurologist and Psychiatrist. etc..

I wish you the best of luck

Take care,


K

Edited by kewlcatkez, 16 January 2008 - 01:46 PM.

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Connective tissue disorder & associated paralysis.

#11 sandy222

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Posted 16 January 2008 - 04:54 PM

Hello all . Thankyou for all your replies and responses. It is much appreciated. In answer to some of your questions-perhaps I should have been clearer..my mistake..the symptoms that I listed are the ones I had in total. Some of them have gone and never returned. The reason I wish my pain to return is only because then I know the effects of the drug are finally out of me and then the other symptoms I still have will abate. I have read all the letters sent to my doctor and the neuro and vice versa and the drug company are also involved with it-infact two drug companies I was just wondering if there was anyone else out there who had experienced this king of effect..thats all.

The symptoms which remain come and go which is why they know its to do with withdrawal and I also have hospital records as I was rushed to hospital the second time I came off baclofen as I had so many withdrawal symptoms. i was thoroughly checked out and all my symptoms were very obvious to the docs that I was suffering from withdrawal problems and my brain couldnt get used to being without the drug. When i first went on 20mg my arms started burning which is why they reduced it to 5mg. When they reduced it to 5mg I had did get painful muscle spasm in my back..it was when I came off the last lot that it became too much for my brain.

The reason for this thread was to see if anyone else had experienced this as this is one thing the drug company havent told me yet. I'll try not to bother any one too much anymore over this and hopefully in a few months will be able to post and say that I eventually recovered.

Many thanks for all your posts. God Bless.xx

#12 kewlcatkez

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Posted 16 January 2008 - 06:08 PM

The reason for this thread was to see if anyone else had experienced this as this is one thing the drug company havent told me yet. I'll try not to bother any one too much anymore over this and hopefully in a few months will be able to post and say that I eventually recovered.

Many thanks for all your posts. God Bless.xx



Hello Sandy,

The posts I made in your other threads have been put together here so they were all me I think.

You are not bothering anyone. I am just telling you my honest opinion. I have worked in CCU where we have had patients who due to drug reactions, withdrawal and addictions even, have wound up seriously ill often with the symptoms you describe and cardiac Arrythmias etc. Some were life threatening, all were serious enough to evoke concern.

The point I was trying, and failing to some extent, to make is that although people can empathise with you and give you their opinions, no one is going to be able to tell you how long to expect the symptoms to last etc. Individuals in the previous thread did relay their opinions, however with such a 'rare' situation, I expect that you will not be having many with similar rare experience. The repeat postings don't improve your chances when the readership is the same,( altho we all wish they would when we are the ones needing help :) ) - is what I was saying. People here will help and are willing to do so- wherever they can. Do not feel slighted, I just want you to realise that our abilities to give you the answer you require are limited. Please see lower down this post for a few ideas. May be worth trying...

As for the drug company not giving you any info about others possibly affected by this, they are legally, ethically and morally obliged (in the USA and UK, Canada, Australia etc at least) to give you an estimate of the number effected as far as possible, whilst respecting the privacy and details o others, as they would you.

You mentioned in your latest post that you do not get these symptoms all together at once, and that they vary in severity and that this is inkeeping with the patterns of withdrawal. I would say to you that this is not correct. Whilst it is the case initially, something carrying on for 5 months post withdrawal of medication/drug DOES happen, but this not based on the drug still having a physical effect. However it can be a Psychological response/illness, ie like in the case of Cocaine and the psychological symptoms people experience after use (which can be years later), not usually of a medical origin and so difficult to 'cure' or predict etc. Psychological effects are just as valid though, I don't want to project otherwise. Its just that they are usually illnesses or impairments which do not follow a 'path' like many 'organic' illnesses do..if that makes sense? :)

I have been thinking about this and I can see how in some cases, such a situation could arise. As Baclofen is a direct antagonist of GABAƟ receptors. As you know it has an effect on the Spinal Cord by means of the Intercellular and outer cell pressures of Potassium etc. Its end result is decreasing Neuronal action Potentials and therefore decreasing spasms. With this in mind we can see how it would affect a person if OD occurs, In oral concentrations where the stomach acid filters out some, it can result in weakness etc etc and in baclofen inserted into the spinal cord, it can lead to Hallucinations and other Psychological and mental state effects.
I can see that in large concentrations where a person takes say 2 or 3 times ( and over ) what they usually do, that it may be possible for some to be stored in the tissues around the cannulae site. - In oral route that would not be likely at all.
With this in mind though, if you are very susceptible, who knows what may be happening? I would suggest that if you wish to go through it, you could get a Neurologist/dr to take a sample of the spinal fluid in the lumbar region of your spine. Then this sample could be sent to Biochemistry Lab and they can see if there are - even microscopic- amounts of Baclofen in the c/spinal fluid. If you are a rare case ( and I know how that feels for other reasons!), it could be that there is a very small concentration which has been deposited in the tissues? Its a long shot, but if the drs truly think this is the root cause of your symptoms at 5 months post withdrawal, then they would probably be willing to perform this. Of course its a case of benefits outweighing the risks in elective procedures.

I hope that this helps, if only for ideas to bounce about, :)

Let us know how things progress..

Take care,

K

Edited by kewlcatkez, 16 January 2008 - 06:15 PM.

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