I suffer epilepsy and live in Victoria. Am I able to help?

[AllForMed]

Howdy all. 

 

I'd spent the last however long writing a very long thread as an introduction thread. I had no idea where to put it. I now have that in a notepad and thought it more appropriate for this thread. 

 

I'm 32. 3 years ago, I awoke in a stroke ward diagnosed with tonic-clonic seizures. I've recently started smoking weed on a daily basis and since have not suffered any seizures. Before then I was having them every few weeks and sometimes one or two might happen in a few days. However, this was because I had also recently started medication including ritilin for adhd, xoloft for anxiety, seroquel for "getting to sleep" and also sodium valprate for the epielsy, which eventually saw the sezures start to take place every 4 or 5 weeks. But I took it upon myself after a few months, as I really didn't like the feeling of the medications, to start smoking cannabis on a regular basis. I haven't had a seizure since.

 

I believe that smoking is having a positive affect on my epilepsy. Along with helping my ADHD and Bipolar (apparently according to one or two specialists, also Aspergers). I would love to be able to find how to get in contact with anyone willing to want information regarding smoking weed and epilepsy as I'd be willing to lend my body and brain patterns to help the cause for the positive movement of Medical Marijuana in Australia.

 

I live in Victoria. I could possibly be willing to be a public face for the use of Medical Marijuana in Australia. I wish to find anyone doing medical research into the use of Medical Marijuana in Victoria and find out if there was a way to get involved.

 

I thank anyone who reads this who is able to help with any information and also for your time. Take care!

 

 

 

Edit: This is just a very simplified version of my current/past situation, I'm hoping to personally speak with people rather than put the "whole story" into the public view somewhat  Thanks.

Edit again: Smoking also helps not needing to take any medication other than the sodium valp. I take that simply because it did help towards "slowing" the rate of seizures, however there have been days where I have not taken the med without problems. However, I don't feel safe stopping taking them completely without the support of a medical professional who knows whats happening. It's finding that professional that is my problem.

Edited May 17, 2016 by AllForMed

[FullCircle]

Hi AllForMed, Welcome

 

That's fantastic that you're seizure free! One of my loved ones has recently suffered a few seizures, it's terrifying.

 

Im not sure who is doing the research, but somebody here is sure to know.

 

Im interested in what regime you use to treat your epilepsy. How often do you use it, and what route of administration? I've been meaning to look into this

 

Cheers

[AllForMed]

Hey FullCircle cheers for the response and the welcome . Sorry to hear about your loved one, although I don't feel anything during the seizures I wouldn't doubt looking at them happen to someone you love is worse at that moment. HAve the seizures been a long time thing or have just developed? Up until 3 years ago I'd never had such a problem. Not even close.

 

As for administration, I've smoked water pipes for some time. ATM I'm trying to keep things at a level of 1g a day. Unfortunately due to stopping in taking the other medication, the only way I'm able to fill that table is by smoking from point of waking up, until I head to sleep at night. It's only at 1-2g at this point also mixed with tobacco. Many other details are left out, but I say only due to wanting to be able to smoke straight green without tobacco, but that, of course if smoked all day, would require more green to make up for the tobacco (well as far as my brain sees things).

 

Apart from the smoking I still take my dosed Epilepsy medication as a backup in case I can't access weed and have to go a few days without it. But have also gone a period without the medication and constant supply and had no problems seizure wise.

 

As for other forms of administration. I smoke water pipes due to it being, as far as I see it, the cheapest way to take the Mary medication, have it also help with my anxiety and bad thoughts for the period of the whole day/night and also just helps me feel "Normal" If I can access another way to administer doses, I'm very much on board to try, but just can't do it on my own. I'd grow, but I have a monthly gardener and refuse to grow inside due to paranoia of a fire or getting caught. (Not sure if the weed causes the paranoia )

 

Feel free to ask any more questions and I'm happy to try and answer. 

Edited May 17, 2016 by AllForMed

[Razz0r]

Howdy all. 

 

 

I'm 32. recently started medication including ritilin for adhd, xoloft for anxiety, seroquel for "getting to sleep" and also sodium valprate for the epielsy, which eventually saw the sezures start to take place every 4 or 5 weeks. But I took it upon myself after a few months, as I really didn't like the feeling of the medications, to start smoking cannabis on a regular basis. I haven't had a seizure since.

 

I believe that smoking is having a positive affect on my epilepsy. Along with helping my ADHD and Bipolar 

 

I am 36 - ADD & ADHD - throw that shitful stuff away - the ritilian! Throw it away now!

In fact the weed has it all - vape it could be better by the by and could replace all that shit you are taking. 

 

But remember - different strains work differently - G13 haze for ADHD for an eg; 

 

Welcome aboard and hope you can live free of those bad drugs they give you  

[AllForMed]

Thank you very much for the welcome Razz0r. I'm very keen to invest in a vape but the cost at this point is just a little out of reach. If I can convince the right people in the fantastic group of family and friends I have, some might be willing to lend a hand in that investment but at this point, I'm more than fine with the water pipe as it's doing a good job. Just that bloody tobacco (although I don't smoke normal cigarettes outside the waterpipe anymore either so I guess it's a bonus smoking "less"?)

 

As for

 

throw that shitful stuff away - the ritilian! Throw it away now!

 

 

Yep that's exactly what I've been doing. That stuff made me feel worse than I've ever felt before mentally. Same with the Seroquel and also Xoloft, however the xoloft didn't make me feel... shit, but hey, if the others are going, rid it too

 

Thanks again for the reply. Stay well.

[AllForMed]

Sorry for double post. However, I may or may not have just sent an email to the premier of Victoria explaining my situation I don't know why I hadn't thought of that yesterday, then again I did say I wasn't the smartest cookie on the shelf.

 

Here's hoping I hear back. I'll keep things updated here if it proceeds any further than me emailing them 

Edited May 18, 2016 by AllForMed

[Blkout]

I have epilepsy and smoking/vaping doesnt help at all with seizures. it does help with relaxing! I know alot of people see it as a way forward to help stop tonic-clonics but I also believe that you need to be aware it is not a miracle cure. it may work for some but not all types of epilepsy

[itchybromusic]

I have epilepsy and smoking/vaping doesnt help at all with seizures. it does help with relaxing! I know alot of people see it as a way forward to help stop tonic-clonics but I also believe that you need to be aware it is not a miracle cure. it may work for some but not all types of epilepsy

no expert but have a look , if you haven't already , at going gluten free , no wheat barley rye or oats 

also are you a person who keeps there salt intake down & have lots of low fat to keep cholesterol in check 

 

i'm now believe that's all BS , fat is good , in the right form & salt when you don't eat out of packets , replaces lots of minerals 

especially if you sweat allot 

 

listen to Dead Doctors Don't Lie by a naturopath Dr Joel Wallach https://youtu.be/ARB73jV4mro

go's for a lill over an hour , well worth the listen imho 

[merl1n]

Hey AllForMed,

                         I too am a medi smoker, not for epilepsy but for pain management resulting from a few (6 so far) neurosurgeries and although I haven't found it to be "The wonder drug" that some profess it to be, it most definitely has assisted me in cutting back on the pharma crap and the resulting side effects that come with them. Often some of the associated side effects of the pharma meds can be worse/harder to manage than the ailment itself. The dr's have used me as a bit of a guinea pig ie 'Here, try these... ...ohh that didn't work... ...then, try these instead..." ending up taking more meds to counteract the side effects of another med, Christ, I rattled like a pill bottle when I walked. I have a collection of boxes of differing meds with everything from high dose opiates through to epilepsy meds through to psych meds. I must say I do still take an opiate, but at way less dosages than before. With a physician's  and a pharmacist assistance/advice/direction I have reduced and eliminated the others. I'd always recommend you consult the people in the know when it comes to reducing meds. Just stopping some meds can have a VERY detrimental effect, often a slow weaning off is a better idea so that your body can adjust to the change.

 

I'd also suggest that differing forms of canna ie hash, oil, edibles can also be beneficial. Personally I find if I'm consuming the same smoke, in the same way, it looses it's effectiveness. So a bit of mix'n'match helps maintain it's therapeutic-ness. As Blkout says there are a few differing forms of epilepsy, so the effectiveness of a particular strain or particular form of canna is very variable. Finding one to meet your specific needs can be a bit of trial and error.

I too have put my hand up to participate in any trials. I attended a state hospital run Pain Clinic. But as my state is not running any such trials and are not even considering canna as a medication, rather leaving it up to the other states to make the first move, so as such, this is not an option available to me. Also many members of the medical fraternity still consider canna as a recreational drug with no medical benefits whatsoever, so for you and I to try and change their views is neigh on impossible. In fact some medicos have blamed my continuing symptoms on my use of 'an unapproved, illegal substance', in basic terms, if it's not approved by the almighty AMA then many dr's won't go anywhere near it. Our Federal govt, Mr Turnbull (Turncoat) came out with a big statement and said they were going to legalise medical canna, when in fact all they did was turn it over to individual state govt's to make any decision on medical canna. So now it's a case of "Ohhh Well, don't blame me... ...Blame the state govts" just another game of political buck passing.

 

So in the mean time whilst the politicians all blame the other side, the people who need it either miss out or are considered criminals for using an 'unapproved' medication. Well fuck'em, label me a crim, I don't care. I manage my condition, the best way I can for me, my way. Not theirs. Some of the medical fraternity make out they know what's best. The fact that these dr's get kickbacks from big pharma in the way of international holidays and gift vouchers means that their objectiveness is self serving rather that patient orientated, so who can we trust? In all honesty the only people we can truly trust to have our own best interests at heart is ourselves.

 

But in saying all of this it is HIGHLY advisable to discuss medication matters with dr's, once you have the information you can make an informed decision for yourself, the last thing any of us want or need is an adverse reaction from reducing or ceasing a med. Get the info first, decide if it is relevant for you and your situation, then make a personal choice for yourself.

 

Hope it helps

Merl1n