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-   -   anti-epileptic drugs (https://www.neurotalk.org/medications-and-treatments/112178-anti-epileptic-drugs.html)

jackie66 01-12-2010 07:07 AM

anti-epileptic drugs
 
Over the past couple of years i have been reading on sites such as this that more and more doctors are prescribing anti-epileptic drugs for depression and pain relief.

Personally I am horrified, since I have first hand knowledge of the effects of these drugs, and have studied the subject of Neurotoxicology.

These drugs do indeed ease pain and miniscule doses do ease depression. What worries me most is the fact that doctors are prescribing high doses on par with anti-convulsant therapies.

All anti-epileptic drugs are cerebellar toxic. The cerebellum is a part of the brain responsible for regulating movement and balance. I personally have cerebellar lesions caused directly by these drugs. I have cerebellar/brainstem dysfunction. This means that I cannot stand or sit unsupported.

Withdrawal from these drugs is very dangerous. In my case the neurologist withdrew the drugs abruptly. I suffered a withdrawal convulsion so severe that I broke my back. I also suffered spinal cord damage and a dislocated rib.
I am now paralysed and need a wheelchair to get about. Do not ever discontinue taking these drugs abruptly.

Experience has shown me that doctors do not study the actions and effects of drugs--especially this group. They do indeed stop pain but only by causing damage to the central nervous system. The right side of my face is paralysed and the right sterno cleido mastoid has shrunk to nothing. All this has occurred over many decades of long term low dose.

It is true that the doctors have found an effective painkiller. What will the eventual price be?. They used to use arsenic and mercury as cures in the same way that they are blindly using these very powerful drugs. They dont seem to be bothered about the final outcome, after all, they are only patients aren't they. The doctors are professionals who are allowed to conceal their failures

Snoopy 01-12-2010 11:11 AM

Hello, Jackie.

Although I can understand your concern there is another side to this issue.

There are diseases that damage the Central Nervous System (CNS). Because there is damage to the CNS and in many cases the cause of the damage can not be repaired or cured drugs are sought to help with pain.

I have Multiple Sclerosis, a disease that has no cure and damages the CNS. The pain associated with this disease is neuropathic and traditional pain meds most of the time won't even touch the pain.

Medications such as anti-seizure/anti-epileptic help, to a point, with neuropathic pain as well as other symptoms. Many would not be able to function was it not for these medications.

Many drugs need to be slowly tappered off of or withdrawl syptoms can be horrible. Some medications can be addicting. In either case there are people who can use these drugs responsibly without a problem.

jackie66 01-12-2010 12:26 PM

Quote:

Originally Posted by Snoopy (Post 609679)
Hello, Jackie.

Although I can understand your concern there is another side to this issue.

There are diseases that damage the Central Nervous System (CNS). Because there is damage to the CNS and in many cases the cause of the damage can not be repaired or cured drugs are sought to help with pain.

I have Multiple Sclerosis, a disease that has no cure and damages the CNS. The pain associated with this disease is neuropathic and traditional pain meds most of the time won't even touch the pain.

Medications such as anti-seizure/anti-epileptic help, to a point, with neuropathic pain as well as other symptoms. Many would not be able to function was it not for these medications.

Many drugs need to be slowly tappered off of or withdrawl syptoms can be horrible. Some medications can be addicting. In either case there are people who can use these drugs responsibly without a problem.



Yes, I am well aware of what you say. I suffered greatly from these drugs in that they CAUSED great pain. However, what I am stressing is that Doctors basically dont really know what they prescribe. They described my pain and general malaise as "all in the mind". Not one of them had any idea as to the toxicity of these drugs. Indeed in 1974 two of them were withdrawn from sale because they were proving too toxic. Bear in mind that most drug induced abnormalities are subclinical therefore no signs for the doctor to see. There will always be a percentage of patients who will get away without real problems -- identifying these people is not possible. It is in effect Russian roulette with drugs. The losers have a worse problem than MS

Snoopy 01-12-2010 04:34 PM

Quote:

Originally Posted by jackie66 (Post 609705)
However, what I am stressing is that Doctors basically dont really know what they prescribe. The losers have a worse problem than MS

I do not believe the entire blame should be on the doctor. A patient has a right to decline any treatment and/or medications. It's always wise to be an informed patient.

I am going to assume you have no idea what MS can do and ignore your comment.

Many here at NeuroTalk have neurological problems and the group of drugs you are referring to helps them with pain.

Hockey 01-12-2010 06:13 PM

Hi Jackie,

I'm very concerned about the drugs I'm on. They keep my pain at a point where I'm not screaming in the grocery store (too often). However, I'm on a VERY HIGH dose and I've heard this can cause pain in the long run.

I tried to cope without medication, but I was a spasming, screaming mess. I have a small child and I have to hold it together. In my case, I wonder if part of the problem is that my neuro won't refer me to a pain specialist and insists on doing his own doping. Frankly, I think he's way out of his depth.

Cheers

jackie66 01-13-2010 06:43 AM

Quote:

Originally Posted by Snoopy (Post 609780)
I do not believe the entire blame should be on the doctor. A patient has a right to decline any treatment and/or medications. It's always wise to be an informed patient.

I am going to assume you have no idea what MS can do and ignore your comment.

Many here at NeuroTalk have neurological problems and the group of drugs you are referring to helps them with pain.


you assumed wrong--- read my post the way it is intended

jackie66 03-02-2010 06:31 AM

Quote:

Originally Posted by jackie66 (Post 609986)
you assumed wrong--- read my post the way it is intended

There has been concern lately (disbelievers check the web themselves) about all types of anticonvulsant drugs causing suicidal thoughts in some patients. When these drugs are given to depressed patients or to patients with severe pain perhaps the medical profession should give extra monitoring to keep their patients safe.

dahlek 03-07-2010 07:54 PM

There are two issues being discussed here I believe?
 
One is about abrupt withdrawal of a med and the other is tolerance and toxicity of any med to any particular patient.
First off, Keep in mind that Physicians [even neurologists] are NOT pharmacologists....those few docs in the WORLD who actually study the effects of meds on patients. Nor should they be. To be updated in ANY specialty could be a full time job? And I've asked docs about this issue? They say too busy trying to help folks than keep up on the 'possibles'.
That said? I am very surprised that any doc would simply 'cold turkey' cut off any med to a patient!
Also? There is the patient's responsibility to READ the info [IF any?] The doc or the pharmacy provides regarding use and withdrawal and ALSO side effects. What I do now? Is ask docs for 'samples' and try it out for s/e's and maybe then order it .....Only after reading all the web site details on 'full prescribing information'... A lot of the goodies, or issues for concern are hidden deep in the details.. As well as issues about this med working with 'that med' well or not... This last part IS important and can cause you major trouble or cancel effects of one or both or more meds! THIS part is up to YOU!
Honestly? IF you like this doc? Be honest w/him-her next time you see them! ASK why did you go off normal procedures of w/drawal of this med? See the response on their face and also Have an alternative 'back-up doc' in mind when you ask this question. In 95%? I think of the instances it's not life-threatening? But it's sure not a great way to experience life!
For my own experiences? I felt the some of these meds helped at first. Then there was some psychological dependency? and when dosages increased results were less than pleasant. [docs orders to increase] Tried many meds, and the last worked for 3 years well, then no more effect. So? I live in some pain? I am getting used to it but it's a good barometer as to what and how I really feel. At least, drug free? I can speak and write in somewhat complete sentences! For that I am grateful! Keep faith in yourself and there mite just be a med out there that CAN help! - j

jackie66 04-03-2010 10:52 AM

Incidently, Antiepileptic drugs prevent the uptake of calcium. Because of this, I was suffering from severe osteoporosis. Quite a few Neurologists now prescribe vitamin D3 for their patients on long term medication. Possibly worth checking?.

jackie66 09-13-2010 04:42 AM

Quote:

Originally Posted by jackie66 (Post 639870)
Incidently, Antiepileptic drugs prevent the uptake of calcium. Because of this, I was suffering from severe osteoporosis. Quite a few Neurologists now prescribe vitamin D3 for their patients on long term medication. Possibly worth checking?.



During 2010 I have thrice suffered severe pain from the pelvis area. In the last week I yet again attended the A&E department of my local hospital. This time, the Doctor examined the route of pelvic fracture and has recommended further investigation. I make no further comment until/if I get a proper consultation and diagnosis


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