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SoMissunderstood
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10 Jun 2014, 12:31 am

Replying to other threads about my past, just reminded me about something that really irks me.

I have (diagnosed) Asperger's Disorder, Fibromyalgia, TMJD (Temporal Mandibular Joint Disorder in my jaw), Rheumatoid Arthritis in my left hip and lower back and PHN (Post-Herpetic Neuralgia caused by a terrible bout of the Shingles last year).

When I was experiencing incredible amounts of pain from the Shingles (I am already hyper-sensitive to pain and fabric touch anyway), I was placed on two drugs; Famcyclovir (an anti-viral) and an anti-siezure, anti-epileptic drug called Lyrica (Pregabalin).

This is a thread about Pregabalin.

When I was taking it for relief from the pain of my Shingles, I also noticed something else...nearly ALL of the symptoms of my Asperger's Disorder vanished, I experienced absolutely no pain or forgetfulness from my Fibromyalgia, no Neuro-facial pain from my TMJD, and my Arthritis, whilst still painful, had the edge taken off.

My appetite improved (I was undernourished and and underweight anyway) and I really enjoyed the occasional bouts of general peace and euphoria that I felt (a drug where 'euphoria' is actually one of the side-effects? YES PLZ!)

Anyway, I went through a course of Lyrica while I HAD the Shingles (and was at total peace for about a month, except for the itching which never went away and almost drove me totally insane). lol

Then, I asked my doctor if he could please re-fill my script for pregabalin, after I mentioned the general benefits and improvements I was seeing in my overall personal condition(s)...it was as though this drug was healing me 'holistically'.

You know what he said? "I am sorry, but that drug isn't approved for use in Australia for treating those conditions, so I just can't and I will get into a lot of trouble if I do".

I went to another doctor (my mum's doctor) and was told the same thing....I went to a third doctor and still, no luck. :(

Isn't it frustrating to know there's a drug out there that can help you, but you can't have access to it because ofall the bureaucratic red-tape bulls***? seriously?



auntblabby
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10 Jun 2014, 1:30 am

sorry about your experience, I am coming from a country where [despite obamacare] getting to see a doctor is still an iffy thing unless one has serious money or a good job. anyways, I found major relief of my AS and ADHD [inattentive subtype] symptoms when I was given Strattera [atomoxetine]. this is a stimulant drug but not an amphetamine, with very few side fx compared with the former. it made me feel "normal" for the first time in my life. alas, in this country it costs $20 per capsule and my insurance would not cover it after a short while.



Last edited by auntblabby on 10 Jun 2014, 1:33 am, edited 1 time in total.

Shadi2
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10 Jun 2014, 1:31 am

Wow that's interesting, but I'm sorry they won't renew your prescription :(

I was looking at the wikipedia page https://en.wikipedia.org/wiki/Pregabalin and it says it is used for some other conditions that you mentioned. I hope for you that it will be approved in Australia soon!


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SoMissunderstood
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10 Jun 2014, 1:51 am

Thanks guys and I also hope pregabalin gets approved for all these things too!

If the patient is closely monitored by the doctor to ascertain the correct dosage and proper procedural observations done, what is the problem? It's not like it is 'addictive' or anything, really.

I had an experience similar to this a few years ago and it's a case of where the patient 'knows their own body' better than a doctor does.

I occasionally suffer with depression, and for years I have been like a 'medical guinea-pig' trying and failing with every pill out there and no, it's not a case of 'I didn't take them for long enough to see if any would work'. I consider that after 3 months, if a pill ain't working (and usually making me sicker than I was to start with), it ain't gonna work, ya know?

So, I went through everything from Anafranil to Zoloft...yeah, it was thus obvious I wasn't 'depressed' otherwise something would have worked by now...

Then, I had a memory....I remembered something VERY important...

When I was 16, my grandmother passed away and we were very, very close. I was grief-stricken for months and it started to affect everything I did and I was studying for my final-year exams at the time and found it difficult to focus.

I got an appointment to see a psychiatrist, and he put me on a drug called Sinequan. This worked like a 'magic bullet' for me and helped me get past my grief and be able to focus...

So, I said to the doctor right there; 'do you know an anti-depressant that really works for me? - Sinequan (he actually had to look that one up). lol

Then he said "nah, that drug is way too old now and has been seriously outclassed by all the latest drugs out there, I cannot prescribe that drug to you'.

I said 'yeah, all of those 'latest drugs' that don't effing work'!

....and that was the end of that and I have never taken another anti-depressant since and never will.



SoMissunderstood
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10 Jun 2014, 1:54 am

auntblabby wrote:
sorry about your experience, I am coming from a country where [despite obamacare] getting to see a doctor is still an iffy thing unless one has serious money or a good job. anyways, I found major relief of my AS and ADHD [inattentive subtype] symptoms when I was given Strattera [atomoxetine]. this is a stimulant drug but not an amphetamine, with very few side fx compared with the former. it made me feel "normal" for the first time in my life. alas, in this country it costs $20 per capsule and my insurance would not cover it after a short while.

I am also very sorry to read about your plight as well...yes, THIS is what I am talking about and what this thread is all about...legal medicines that help you, but the government gets in the way.



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10 Jun 2014, 1:55 am

SoMissunderstood wrote:
auntblabby wrote:
sorry about your experience, I am coming from a country where [despite obamacare] getting to see a doctor is still an iffy thing unless one has serious money or a good job. anyways, I found major relief of my AS and ADHD [inattentive subtype] symptoms when I was given Strattera [atomoxetine]. this is a stimulant drug but not an amphetamine, with very few side fx compared with the former. it made me feel "normal" for the first time in my life. alas, in this country it costs $20 per capsule and my insurance would not cover it after a short while.

I am also very sorry to read about your plight as well...yes, THIS is what I am talking about and what this thread is all about...legal medicines that help you, but the government gets in the way.

in America it is the daggone insurance companies and drug companies that get in the way.



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10 Jun 2014, 2:00 am

He could at least give a try to that other drug, or something similar at least, especially knowing that it worked for you. We need doctors, but some of them have a really frustrating attitude.


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SoMissunderstood
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10 Jun 2014, 2:21 am

Yup...and then it only re-enforces all of those 'conspiracy theories' one holds as to what extent doctors are mere 'puppets' having their strings pulled on by all those greedy pharmaceutical companies...



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10 Jun 2014, 2:25 am

SoMissunderstood wrote:
Yup...and then it only re-enforces all of those 'conspiracy theories' one holds as to what extent doctors are mere 'puppets' having their strings pulled on by all those greedy pharmaceutical companies...


It sure does.


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SoMissunderstood
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10 Jun 2014, 3:20 am

While I am actually on the subject of Pregabalin, allow me to please elaborate on the changes I notice in my own body and brain, and how any/all of what Pregabalin can do for Epilepsy, it can also do for those (some of those, at least) with Autism Spectrum Disorders.

Having a bout of the Shingles (although extremely painful), taught me everything I needed to know about my own internal neuropathic pathways and also about the total lack of certain neurotransmitter substances (especially Acetylcholine - after many years of replacing mine with THC).

Anyway, what Pregabalin does (or did, in my case), is to deaden all the sensations from my brain's ACH 'receptor sites' to the hyper-sensitivity that I was experiencing on my skin - I could even hold my finger an inch above the affected area and 'feel' it - way to go to experience the Astral Body, eh?

Having this disease really opened my eyes and heightened my sensory awareness (once I got past the excrutiating pain of it all).

I could understand how this drug, Pregabilin is used to treat Epilepsy from an internal perspective - I have never had a fit in my life - but I just understood the whole internal 'mechanics' of it all'.

Then, I started to think about the similarities between Epilepsy and Autism and how (in some cases, not all), it can be attributed to a lack of a certain neuro-transmitter in the brain, and how the drug, Pregabalin has the ability to shut down the same neuropathic pathways and neurotransmitter receptor sites.

I am just going by what I felt and what I experienced myself when I observed what was happening in my own body. I hope a medical person or scientist can read this and then they will know.

*still trying to get my receptors to respond to ACH once more is frustrating though. lol



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10 Jun 2014, 4:57 am

I just decided to do a bit of research on the epiphany I experienced last year, and I just found and read this article here:
http://www.ncbi.nlm.nih.gov/pubmed/20190638

Years of meditation and yoga has enabled me to see inside my own mind and body (although I don't wish to see my lungs anymore). lolz

Anyway, there are no replies to this 'abstract'...so what if it isn't really all that 'abstract'?

I have taken enough legal and illegal drugs and experienced different withdrawal symptoms from each to understand what they are all doing...and I know I should have stuck with meditation and yoga (and I do that now).

Still, it would be nice to take a drug like Pregabalin just to get me through those difficult times, when my Aspies always just 'gets in the way'.



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10 Jun 2014, 5:36 am

Another thing I read:

Quote:
Gabapentin was initially synthesized to mimic the chemical structure of the neurotransmitter gamma-aminobutyric acid (GABA), but is not believed to act on the same brain receptors.

Some of its activity may involve interaction with voltage-gated calcium channels. Gabapentin binds to the α2δ subunit (1 and 2) and has been found to reduce calcium currents after chronic but not acute application via an effect on trafficking[37] of voltage-dependent calcium channels in the central nervous system.[38] Another possible mechanism of action, reported by Ben Barres and colleagues in Cell in 2009, is that gabapentin halts the formation of new synapses.[39]


http://en.wikipedia.org/wiki/Gabapentin

Gamma-amniobutyiric acid is produced by the synthesis of nicotinic acetylcholine at the receptor site. I believe this is the key to it all.

*goes and reads Cell

**goes and studies the molecular structures of Calcium and Sodium Voltage Gate Inhibitors vs ancient drugs like curare..*

**now I am interested and have something to occupy my my thoughts for a while. lol



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10 Jun 2014, 6:47 am

That sucks that you can't get an off-label prescription for Lyrica. I looked at its wiki and discovered that its makers (Pfizer) got fined 2.3 billion dollars for "illegally promoting" off-label use of Lyrica. So there may be a special avoidance of off-label Lyrica prescriptions because of that.

One the other hand, now that you know what works, you may be able to google up some non-prescription routes to the same end. You have already started the project of figuring out how the drug actually works. Figuring out non-prescription ways to get the same or similar result may be possible. Just googling "how to naturally increase GABA" (as a rough starting point) brought up a lot of woo. But you seem well able to cut through the woo and find something legit.



SoMissunderstood
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10 Jun 2014, 7:00 am

Janissy wrote:
That sucks that you can't get an off-label prescription for Lyrica. I looked at its wiki and discovered that its makers (Pfizer) got fined 2.3 billion dollars for "illegally promoting" off-label use of Lyrica. So there may be a special avoidance of off-label Lyrica prescriptions because of that.

One the other hand, now that you know what works, you may be able to google up some non-prescription routes to the same end. You have already started the project of figuring out how the drug actually works. Figuring out non-prescription ways to get the same or similar result may be possible. Just googling "how to naturally increase GABA" (as a rough starting point) brought up a lot of woo. But you seem well able to cut through the woo and find something legit.

*like button

Yep, I am already on it and I may find a natural alternative that isn't a lot of baloney (having a background in basic biochemistry helps). lol

Thanks for your reply.



SoMissunderstood
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10 Jun 2014, 8:16 am

Shadi2 wrote:
He could at least give a try to that other drug, or something similar at least, especially knowing that it worked for you. We need doctors, but some of them have a really frustrating attitude.

...and you know how we all tend to 'overthink' things (especially when nobody is talking/replying to you anywhere and you are dying of boredom, so make multiple posts on WP) - I hope I don't get into trouble, but I do realise it can get annoying, so I'll stop.

The early classes of anti-depressants were very simple, but it didn't make them any more or less 'better' than the current range of anti-depressants. Sometimes it takes a 'simple pill' to do a 'simple job' and the more complex a drug becomes to treat depression, the more side-effects it has (the only side-effect I experienced with Sinequan was a dry mouth...oh look, water exists!). lol

Anyway, the whole point is that certain deficiencies and abnormalities in brain chemistry require a certain class or family of drug to fix it...it's like a key fitting into a lock and opening the door....you just gotta find the right 'key'.

Other keys won't open the door because they just don't 'fit', so maybe, just maybe the chemical composition of Sinequan was analogous to whatever was going on with my depression and inside my brain, where all the other 'better' drugs are just....not (and created more imbalances than they were meant to fix in the first place).

Why can't a doctor just listen anymore? Instead of saying 'I know what is wrong with you!' let us TELL them what is wrong with us...but oh no, their egos will never allow it.



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10 Jun 2014, 10:02 am

I was prescribed Ritalin for inattentive ADHD and it was the most magical feeling. I could focus on boring things and not get frustrated and my anxiety improved a lot.

Then I came off my effexor using advice from my doctor but it was too fast and the withdrawal reaction made Mr hypersensitive to psychiatric drugs. The ritalin started making me feel worse so I had to stop taking it.