Whist studying the book "Neurotoxicology" in order to ascertain why I was so ill, and why the Doctors were useless, I came across the chapter entitled "the cerebellar toxicity of antiepileptic drugs" This chapter answered most of my queries.
Whilst studying, I made contact with the epilepsy research foundation. They invited me to send in a report, so I typed out 16 pages and entitled it " A patient's views and studies." I then got a reply from the foundation inviting me to join them at their meeting at the Royal Society. I went to several of these meetings and enjoyed the very interesting talks by the top British epilepsy experts.
Yet more of my queries were satisfactorily anwered and I now know what damage has been done by those antiepileptic drugs. I have never suffered from epilepsy but did have a mother who suffered from "Munchausens syndrome by proxy" She was very convincing with her lies.
Due to the fact that I was studying the subject whilst suffering from the drug toxicity, I have a unique insight into the problem.
It might be interesting to note that there are four classes of drugs with neurotoxic potential
The anti cancer drugs
Psychopharmacological drugs
Nitroimazoles
Antiepileptic drugs.

I am sorry you have to live with that.

Statins used for lowering cholesterol also are neurotoxic.

You might investigate supplements that enhance mitochondrial
functioning. Acetyl l carnitine, CoQ-10 and alpha lipoic acid are examples.

Chemo damage for example does have studies that acetyl-l-carnitine can prevent damage.

I am extremely sorry that you grew up with a Mother who had "Munchausens by Proxy". It is a HORRIBLE disorder for the chosen "PROXY" (or Proxies) to hopefully SURVIVE!!!

I send you my hopes that you & any siblings now lead happy & free lives.

Mia

Hi jackie66!

I appreciate your efforts to bring this topic up for discussion!
Although not a pleasant topic, it is a very important topic!

Actually, more drugs/drug categories than those listed have the potential for neurotoxicity! The numbers of drugs with the potenital for neurotoxicity are astounding!

I am of the opinion that "informed consent" is no longer a concern for many of the people prescribing and/or dispensing medications. I remember when informed consent was considered a very important aspect of treatment.

Since those prescribing are getting away with not granting patients the opportunity for fully informed consent (by the prescriber), I also wonder if patients understand the importance of exercising their rights to have comepletely informed consent? I tend to think that if enough of us demand fully "informed consent," it may again become considered an important aspect of treatment by doctors, legislators, health care admin., etc.

The necessary reform around issues regarding fully "informed consent" is long over due.

People are paying a very steep price for the lack of this extremely important portion of their healthcare information.

I agree with mrsD on suggesting you look into some of the known methods for enhancing mitochondrial functioning. She has suggested three very powerful supplements now often mentioned in the mitochondrial support literature. These (and other) supplements may be very helpful to some people suffering mitochondrial damage/dysfunction/deficiency.

Jackie, please also always review for any potential adverse reactions/interactions when considering any form of treatment/supplementation.

Mia has left a note for that has touched my heart, as she recognizes the very serious damage often suffered by those under the care of someone with Munchausens by Proxy. I, too, am very sorry you have suffered and hope you can find help in minimizing future suffering.

Jackie, I am very touched by your motivations to find some answers for yourself, as well as your motivation to share important information with others! I am grateful to you!

I have looked into Mitochondria and the supplements suggested. The main problem for me is that I was suffering from two items, both of which can cause truncal ataxia.
First, the antiepileptic drugs. They are known to cause liver problems especially the Sodium Valproate. The monitoring of my drug usage was very poor indeed. This was due to the Doctors not knowing what they were actually monitoring. In all my years taking these quite unnecessary drugs I only had 3 or 4 blood tests done. No Doctor ever noticed that I could not sit unsupported either.
The recent visit to a Doctor who actually knew about ataxia was beneficial in that he actually LOOKED for vitamin E deficiency. There is no real way of actually finding out just how long I have been E deficient. I am, however, aware that the E suppliment that I now take IS doing good. This Doctor, I am sure, would have suggested other items such as CoQ-10 if he thought they might do good. He does actually prescribe that to some of his patients. Nothing is going to help the paralysis though

Jackie, I, too, offer appreciation for the valuable information that you are offering here in the Neurotalk forums. Thanks, indeed! bille

When I was in the grip of unnecessary barbiturate drugs ( which are depressive) The idiot doctors prescribed Amitriptylene. then to counter the barbiturates they prescribed amphetamines. Enter one Zombie---

It was in this period that I realized that the depressions diagnosed had no relation to the deep depressions that some unfortunate folk suffer from, but the Doctors were not bright enough to know this. I determined that, after seeing depressed people and their actions, I would not go down that road.

I resolved never to sit around in the mornings still wearing my night clothes. I get showered and shaved before going out for my newspaper (I could have got it delivered) then having a good breakfast. The newspaper kept me up with events. I then set out to MAKE things happen.
I created a need and set events in motion, even if it was waiting for a mail order item to arrive.

When the abrupt cessation of drugs caused me to convulse so hard that I fractured my spine, just sitting in a chair, aching, was not my way of doing things. I got my wife to buy me a ship model kit (timber and brass --I hate plastic) and filled my mind sorting out how to do it. It was also good practice to exercise my eyes and try to resolve the severe diplopia that the drugs had caused. It took many years but I can now see well and true
It was about this time when I allowed my gender dysphoria to come to the fore and fill my mind with nice thoughts and ideals.

I spent a great deal of time studying why my dressmaking efforts did not match the dress performances of the costumes in the Hollywood films. I did eventually solve this and now get great pleasure designing and making the dresses of yesteryear.

The point is; Dont allow the mind to be empty- fill it with nice things and make things happen

My doc put me on Lyrica, as well as for the past year and a half, I'm on Norco 350mg 6xday; Corisoprodol 350mg 4xday; xanax .05mg as needed daily; and Lyrica this past week 300mg day. I am zoned out and decided today that I'm DONE with Lyrica. I started the double dose routine yesterday and could hardly function. And this is the program he put me on for now. I was also prescribed AND FILLED Fentanyl patch 25mg every 72 hours IF I have to resort to that for pain control. I'm reeeeeeeeeeeal close to putting a patch on. I am going to my third surgeon for a consult for neck/back issues. Had an anterior cervical fusion/disectomy July, 08 and I am no better. My arms, hands, fingers hurt as well as being weak and fatigued. One of my concerns is "abruptly stopping the Lyrica" all together. I placed two phone calls and left detail reasons of concern w/the doctor's office. Haven't heard yet so now I am surfing for answers. I think I'm becoming a junkie! Am I one? Last night, and I know this is TMI, but I woke up during many intervals and realized I wet my bed! I don't know if it was because I was too out of it to realize to get up and go to the bathroom or if my kidneys are affected. What is going on anymore is beyond me...I am clueless. I'm hoping to get some answers next week when we go see this new doctor.

I suspect carrying the pain would be less traumatic than taking that huge addictive cocktail of drugs. In time, painkilling drugs actually CAUSE pain. Choose your Doctor with care. These days, too many doctors are giving anticonvulsant drugs as painkillers. Antiepileptic drugs are cerebellar toxic, and as in my case they cause paralysis. They can also CAUSE convulsions. Beware of incompetent doctors.

the bold, could be indicative of cauda equina issues...serious, suggest doc visit.....expecting pain relief from spinal surgery if oft folley.....it is done to correct/relieve neuro deficit, pain relief may be a happy side affect, but not always.