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

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

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.

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

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.

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

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

The GP I had at the time made little of my trauma, so I went to a new health centre. I went as arranged and saw a new GP. She spent a bit extra time with me then asked if I would go back to the waiting room whilst she dealt with two other waiting patients.
When I went back in, she told methat she had telephoned the hospital and arranged an appointment with a neurologist, but first I must have a full body MRI scan maybe in a week or so. She also said I should have been admitted to hospital when the fracture occurred

The strange thing about this was I only visited the Doctor because I was concerned about the loose bowels and erectal dysfunction. She immediately checked my neuro (babinsky) knee reflexes (poor) and felt my spinal area (immediate spasms). She said the Neurologist wasnt sure if it was spinal or pelvic causing the looseness. I am now quite mystified since no Doctor has ever examined my back (Iatrogenisis possible legal proceedings) before (cowardice? )

My new GP referred me to a neuro surgeon who is organizing an MRI scan full body. He works in Leeds general infirmary and said that as soon as MRI results are known he will arrange an appointment in his clinic. I got a letter a few days age confirming an appointment for a MRI scan - - - - At St James hospital in their oncology wing. This Hospital is a leader in cancer treatment. It would seem that I have found some good Doctors who are looking at the problem from several angles. The Scan at ST James will also show any spinal fractures or spinal cord lesions so the neuro surgeon will be able to work if needed. It seems that many things can cause loose bowel movements. I do know that T8 vertebra is not stable and might be responsible for some spinal cord impingement, I feel that I might also have a pelvic fracture too

I had an MRI scan yesterday at St James Hospital in Leeds. They have a 3T scanner there. They scanned upper and lower spine. I wonder if the lower region is in fact a sacral fracture? The symptoms seem to say so. The neuro surgeon now has a good picture to work from. Not looking forward to the cure procedure!

Over past months I have been experiencing severe pelvic pains. The neurosurgeon said that my spine was in wonderful nick for a 75 year old. This is strange since I was told in the 1990o's that I had severe osteoporosis. I always believed it to be anticonvulsant hypocalcaemia and the scan has shown that I was right all along. I have replaced the calcium from my normal diet. The people here taking anticonvulsant medication of any kind should make sure that the doctor keeps a check on bone strength.

As is usual I have had to work out for myself as to why I am getting pelvic pain. Since I have truncal ataxia and malabsorption of vitamin E my balance leaves a lot to be desired. It should be noted that cerebellar lesions do not cause paralysis. I have paraspinal paralysis, Half of my neck is paralysed, and my right leg is quite lazy.

I can concentrate on my balance. I can concentrate on getting mobile despite the non-working muscles, but I cannot concentrate on both. The consequence has been that I have put too much load and awkward movements on to the pelvis, thereby damaging the ligaments. I believe that I have damaged the sacrum/pelvis ligaments and the pubic ligament.

I am now resting the pelvis as much as possible and have succeeded in reducing the inflammation in the pelvic region.

My GP has at last realized that I really do have a neuro problem - perhaps the use of a power wheelchair and my inability to walk has rung a few bells Maybe, just maybe, the fact that I gave him a copy of the report that I sent to the Epilepsy Research Foundation might have done the trick. He acknowledged that I have had poor medical care from Doctors. He has made a referral to a neurologist at long last ---- but I won't be holding my breath

Hi Jackie .. I was very interested to read your thread. I was put on epilepsy drugs for pain and the first lot, Gabapentin, caused me to swell up like a balloon. The second lot, Lyrica did the same and caused a severe kidney infection. I told the Doctor I wont be touching these again.

I had to laugh too, with a history of self harm and two overdoses due to depression .. and I've been on Prozac for 16 years now, they still prescribe drugs for pain that can cause depression. :D You have to laugh!

It should be quite interesting if I get an appointment to see a Neurologist at Leeds General Infirmary. The records kept in that Hospital contain 18 variations on a theme of hypochondria. Indeed I had to go out of the county to get a sensible diagnosis and MRI scans to show cerebellar damage and spinal cord lesions.

Blimey Jackie .. I went just down the road to The Northern General in Sheffield .. after a long round about route; having had an operation at Thornbury Hospital in Sheffield in 2004, I was diagnosed with degenerative facet joints and failed back surgery at Chesterfield Pain Clinic. I've had a long, long list of medications, including Oxycontin which is the nastiest drug I've ever had, and I have been referred to The Pain Clinic at The Northern General and am being trialed for a Spinal Cord Stimulator in May.

After reading of your experience, I feel very lucky.

Dr Hadjivassiliou at the Royal Hallamshire ataxia clinic diagnosed my truncal ataxia and spinal cord lesions after he did a 3T MTI scan on my head and a 1.5T scan of my neck. I saw an item on the web about this clinic and asked my GP for a referral.
West Yorkshire is the very worst place to be if you have neuro problems. It was a neurologist in Pinderfields who removed my drugs abruptly. That team of Neurologists were totally clueless in the field of cerebellar toxicity of antiepileptic drugs and the resulting ataxia
They referred my condition as a "bizarre gait" not ataxic gait

The main problem with drugs lies in the fact that we are all different. Consider the asbestos problems and huge publicity. The problem affects a certain group of people who are susceptable. If this were not so, then the majority of construction and engineering workers would be dead now.
The same applies to manufactured drugs. If a drug cures or supresses a condition in most people but actually kills a small percentage, then that drug will be considered to have more benefits than risks.
Many thousands of people have taken the same drugs as I but are basically unharmed. There will be a small percentage such as myself that are actually in some way allergic to the drugs. The problem lies in that Doctors do not consider the people who suffer from their prescribing, instead they boast about their successes

Whilst I was waiting to see the neurosurgeon for the results of my MRI scan, I noticed on the table, a model of the spine and pelvis. Included in the model were the ligaments sacral/pelvis and pubis.
I at once realized that the pain was eminating fom these ligaments and not from any bone.
The neurosurgeon, upon seeing me sitting in my wheelchair, did a short examination of my legs and recorded that I have some antigravity function in both legs and that sensation was altered somewhat mainly on the right side.

I now began to realise that I was putting extra effort into my mobility to counter the weakening leg situation. The extra effort was causing me to overload those ligaments thereby causing some damage. The damage also caused inflammation in the whole pelvic region which in turn led to the loose bowel problem.

The Neurosurgeon recommended that my GP refer me to a Neurologist. This means another long wait. I still had no advice regarding the pelvic problem so I decided the only way to get relief was to sort out the problem myself.

I reasoned that if I kept load off my pelvic region, the ligaments would heal in due course and that would reduce the inflammation --- and -- hopefully end the bowel problem.
I have been following this course of action for several months now. I am fairly sure that I have succeeded in allowing the ligaments to heal since the pelvic discomfort is no more -- and -- my bowel actions are almost normal now.

When I eventually get to see the Neurologist I fully intent to put him/her straight regarding the unreliability of my medical records and merely seek an honest and accurate examination and diagnosis.
pigs are flying low today ----------

I have received a date for a neurology appointment Monday 18th July.
It should be quite interesting. The problem with my neck, I believe, is due to the brainstem dysfunction causing the spinal accessory nerve to malfunction. ( I wonder if they will spot it) The right upper eyelid also is drooping, --another cranial nerve misfunctioning.
The only real puzzle I have is why my buttocks should be not working. From what I read, this bit involves the sacrum area nerves. Ah well, we will see.

The appointment was extremely interesting. The total consultation was just 15 minutes. The Doctor read my prepared history, but I doubt very much if he understood it. He was a foreign person and without any examination he declared the SCM atrophy was due to old age and told me to forget the past.
Thankfully he did order an EMG test which is basically what I wanted.
I have no faith or trust in this person. He did not examine any muscle functions and it seems that he forgot to bring his tuning fork along. He conducted Babinsky test in half a second, and I dont think he was actually looking at my feet at the time. After reading my prepared drug record which said that I have taken no drugs for 20 years, he asked what drugs I was on now.
This is an example of the National Health Service in West Yorkshire. They may boast about saving some patient's lives - but I do wonder how many they have actually killed

I wrote a letter to my GP last thursday, telling him what went on during the Neuro consultation. I also included the history that I had prepared for the Neurologist. This morning I received a letter from the Hospital informing me of an EMG appointment --TOMORROW. Could someone have actually taken notice of my distress?

As Arranged, I attended the appointment. The neuro had only ordered that my leg tingles be checked. All clear and normal was the result. I asked him to check the buttocks since I feel nothing in those muscles. All clear and normal, he said.
Whilst I was standing there with my pants around my ankles I was using a nearby unit for balance --just using two fingertips. He told me to let go and stand "you can do it" he said (they always know, don't they). I immediately went into a wobble and fell flat on my back -- he made no attempt to enquire if I was uninjured. The nurse stood by whilst I got myself back on my feet (the best way).
I have no idea what the next move will be. I should imagine that the neurologist is in the same boat.
The EMG doc did say that the problem was elsewhere -- meaning the brain and spinal cord. I wonder if the Neurologist knows what that is.

This morning I made an official complaint as to my recent treatment. I don't think it is too much to ask for the Doctor to ensure the patient is safe.

On monday I went to St James hospital A&E dept presenting with headaches and was diagnosed with concussion as well as other neurological deficits

im sorry for your reactionbut i replied to this post to say your VERYright when you say never withdraw from meds too fast.

sue dyas

I have now allowed a timelapse for that foriegn "neurologist" to make a follow up appointment. ---No such appointment has been made...

When I first saw this "neurologist" I was amazed at the speed he went through the motions of an examination. Since the transfer from wheelchair to examinatuion couch had caused my front thigh muscles to go into painful spasm, I expected him to wait until I was back in control of those muscles --but no-- he grasped both my ankles in his huge hand and continued his examination. When he quickly scratched the soles of my feet he wasnt even looking at my feet so could not have seen my toes on the right foot spreading -indicating possible cerebellar problems.

I wrote to my GP complaining about this man and I enclosed the history I had presented. I told my GP that this man had in fact read my history but I doubted very much if he understood what he was reading. Also I told my GP that this "neurologist" had told me that my sterno-cleido-mastoid atrophy was due to old age, and that I should forget the past. Since he had made no examination of my paraspinal muscles, it convinced me that this man was a fake foreign doctor.

The records I presented stated that I was aware that none of the Doctors I had seen knew about the cerebellar toxicity of antiepileptic drugs -- or ataxia- or anticonvulsant hypocalcaemia. Hence the undiagnosed cerebellar/brainstem dysfunction or the undiagnosed truncal ataxia or the misdiagnosed osteoporosis in those hospital records.

The hospitals involved were the Leeds General Infirmary and Pinderfields hospital. Both of these hospitals treat epileptic patients, and both of these hospitals claim to monitor the patients' drug regimes. Experience has shown me that they only monitor the drug levels in the patient in line with the manufacturers instructions. Experience has also shown me that both of these hospitals do not monitor the condition of the patients and the effects of toxicity on the patients. It is pure ignorance that is the problem. Doctors who do not know --or even care- what effect those powerful drugs are having on their patients

This can only be described as criminal negligence