Re: 's autopsy

[Guest guest]

That is beautiful and so well said.

>

> > I am a stranger to many here. I am very suprised at all the

> > speculation taking place on 's sudden death. Surmising that

> > certain drugs may have lead to his demise, is without scientific

> > merit.

>

> Since you are a stranger here, allow me to tell you a little about

> the people on this list.

>

> All of us are living with, or living with someone who is living with,

> a disease that has no sure diagnostic test, no reliable treatment,

> and no known cure. All we know is that somehow we got it; and that

> the vast majority of us will be living under its shadow for the rest

> of our lives.

>

> In this impossible situation, we respond in various ways. Some

> retreat into despair. Others distract themselves with drugs,

> religion, or other obsessions. The healthiest and sanest of us,

> however, fight back with whatever wit and energy we have left. We

> become compulsive seekers of information, working alone and together

> to pull together pieces of a puzzle that has eluded our doctors, and

> that even the world's best researchers have been unwilling or unable

> to assemble.

>

> Through the years, this constant discussing, ruminating, speculating,

> and dissecting on every piece of information we discover becomes an

> ingrained habit of mind. By and by, it emerges as a dominant strategy

> for dealing with any kind of uncertainty. Find out as much as you

> can. Lay it out. Look at where the holes are; and see what you can

> guess about what might fit into them. Maybe there's a pattern. Maybe

> you'll learn something new. Just often enough, you find a hint of a

> direction, a glimmer of something you didn't see before. For most of

> us, whatever healing we achieve will be won by working this strategy,

> over and over, ever on the lookout for the answer that will make our

> days a bit more bearable.

>

> It is, in the end, the only cure that has been proven to work.

>

> You are, of course, right in that we have no business making such

> speculations about a deceased man we did not know. We're well aware

> that it's not " good science " (though remember, please, that the

> practitioners of " good science " have long ago let us down in ways

> that can only be described as criminal), let alone in good taste.

>

> But, upon hearing of 's death, we found ourselves once again in

> an all-too-familiar situation: A medical problem. A tragedy. A loss.

> And precious little information.

>

> And so we did what we always do: Laid out what little we knew, and

> began to look at where the holes were and where the pattern might lie.

>

> We valued specifically because, among us all, he was one of the

> masters of this process. If it had been another member of this list,

> and had been here grieving with us, rest assured that he'd have

> been out front of the pack as usual, assembling what was known about

> the situation and trying to draw the correct inferences from it.

>

> You may be horrified. would not have been. In fact, I suspect

> he's somewhere, smiling.

>

> Sara

>

[Guest guest]

>

> had experienced a seizure in the past, in a stock room at

> work, and was discovered by a fellow worker. believed in

> scientific research not mere speculation, and this will take place

> through the proper channels. His physician, who has been informed of

> 's passing, I am sure will be collaborating with the M.E.'s

> office. They have the data neccessary to draw conclusions.

>

Hi ,

If I understood you correctly you mean we should leave these discussions to

Doctors.I think doctors first prioritization should be finding the cause and

cure of this illness. I hope you are also aware of that.If they can do that

we will feel no need to discuss these subjects.We have so long been treating

ourselves and perform such discussions to learn from each other due to

inability of current medical system to accept,understand and treat our

illness.

best wishes.

Nil

[Guest guest]

Thanks for trying to help and thanks for helping us now with your advice

regarding these commonly used drugs.

Marcia <mgrahn@...> wrote: Helen,

This is a great mssg and a great reminder of just how dangerous these drugs

really are. You did what you could to try and share that with , so please

don't beat yourself up about this, you did try and share with him but each

person will ultimately make their own choices and have to pay the consequences

for them. It pays to be so very cautious with treatments, esp with the brain

drugs. This is a mssg I hope everyone who has taken these drugs or considers it

will file away for future reference!

Marcia

Re: 's autopsy

I am so upset about 's death. When I saw him struggling with

Neurontin withdrawal, I wrote to him offlist a bit, but he didn't

seem very interested in continuing the conversation or listening to

what I recommended. How I wish I had persevered with my attempts to

help him.

I know I have told my story of klonopin before on this list, how it

gave me suicidal depression, how I had to use a water titration

method to get off it, how I wish people would read up on it before

taking it, how I wish CFIDS doctors would consider the dangers of

this drug before prescribing it. I had to take Neurontin to get off

klonopin and now I am slowly coming off Neurontin, by a method I

tried to share with . But he said what I was doing was too slow

for him, he wanted off that drug because it was making him ill.

He was doing the reverse for a bit, taking klonopin to come off his

high dose of Neurontin. Everyone's brain is different. Some who take

Neurontin become suicidal, there are lawsuits out on it. In my case

it saved me from suicide, but like many, I built tolerance to it

rapidly. Tolerance is a little-known danger of the benzodiazepine

drugs like klonopin and Neurontin as well. God only knows about this

Kreppra drug he may have started taking.

Both Neurontin and klonopin are antiseizure drugs. If you are on them

for more than a couple of weeks and then take them away abruptly or

even anything less than very gradually, you run the risk of seizure.

I have spent the last three years in benzo forums where it is known

that some people have died from benzodiazepine drug withdrawal. I

can't tell you the number of people who have come to grief trying to

come off this class of drugs and how few doctors will even

acknowledge the severity of the problem or provide sensible

guidelines to help their patients in this difficult process.

Less is known about Neurontin, but I remember saying he

couldn't keep anything down, as he tried to cut his Neurontin dose

back. He was obviously very sick with withdrawal, a lot of people

have to inch their way off Neurontin, as I am cautiously doing,

having been burned but good by the klonopin.

Earlier this month he was so psyched about taking Recuperation and

saying he wanted to clear his other meds out to take Recup alone. How

I wish I had written to him again to warn him not to push his way off

those drugs quickly. For that is what I fear he did, in his desire to

experience Recuperation in a purer state. He may have tried to

crossover to the Kreppra, which I know nothing about, but it is

described as another anti-seizure med.

It is tricky going from one drug to another, and should generally be

done gradually. Neurontin has a very short halflife, you really need

to take it three times a day because it washes out so fast. If

Kreppra has a longer halflife, it would take more time to build up to

cover the Neurontin withdrawal. Klonopin has a halflife of about

three days, depending on your metabolism. So if you stop it, watch

out three days later. Some people experience problems for months and

years after too rapid withdrawal from benzos and I do not know how

long the seizure risk would last or if it could be retriggered by

alterations in similar medications.

We will probably never know what happened with 's medication,

but I am thinking it is something with these very dangerous drugs,

and we should all pay heed. They affect the GABA receptors in the

brain and being distraught as he was in his last post would throw a

great load of stress onto those receptors as well.

I am sitting here in great remorse, feeling guilty that I didn't try

harder to talk to about what I know about the dangers of

withdrawal from these drugs. I had told him to write to me any time

about his struggle with Neurontin, but he was so focused on his

research, such a brilliant young life so needlessly gone.

Helen

>

> Hi all,

>

> Jill wrote,

>

> > ...at first I thought it was suicide and it still may be. But

> > if he was taken off benzos, that alone could have made him

mentally

> > and physically unstable, for instance. You can have fatal

seizures.

>

> After I talked to 's mother I didn't post what she told me

about

> the results of his autopsy because I didn't want to get it wrong.

I

> thought that 's friend might have more accurate details.

>

> But since several here have been speculating about the cause of

's

> death, here's what she said: " The autopsy said that he died of a

> seizure in his sleep. " I wrote it down.

>

> Sue ,

> Upstate New York

>

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Here's the problem with that. There is no way to know if someone dies of a

seizure. When my sister died (in a hospital) the coroner thought it was too

much thorazine, her level was high. Then he changed his mind; don't know if he

really decided the amount of drug in her couldn't kill her, or if he was

pressured. Anyway, there was " no evidence of seizure " , I think he said you

can't tell from looking at a brain if it had a seizure. I think they look more

for bitten tongues and that sort of thing. But in her case there was nothing.

The autopsy report said the cause of death was seizure. I asked him how he

could say that if he didn't know. He said because she has a history of

seizures, and there was no other cause they could determine. To me the autopsy

should have said " unknown " but i think there is very strong pressure not to say

unknown.

So the fact that 's autopsy said " seizure " means absolutely nothing to me.

They are guessing. It could be anything else that they don't understand or

didn't know what to look for.

Doris

----- Original Message -----

But since several here have been speculating about the cause of 's

death, here's what she said: " The autopsy said that he died of a

seizure in his sleep. " I wrote it down.

Sue ,

Upstate New York