Medical Access

[merl1n]

A couple of months ago I asked my GP about obtaining cannabis to treat my ongoing symptoms.

"Ohh ahhh, I don't know anything about the processes, I wouldn't know where to start..."

Being that I'm in SA and there being no clinic's here (our state Gov't (Liberal) still have their heads buried firmly up their own arses)  I thought the whole process would be a waste of time

I went investigating and found a clinic in NSW, who would go through the whole process online.

 

So after a couple of weeks of paperwork both from myself and my GP, today I got the call from the clinic and have had the initial approval.

I now have to obtain the approval from the TGA but from what I've been told this should not be a problem and should take less than a week.

The Dr I spoke to has told me that what he would be prescribing is a CBD and THC combination as my situation is pain related.

I asked the Dr about the cost of the medication itself as it is NOT on the PBS and I have to say it is NOT cheap.

The Dr himself would not actually tell me a defined cost but advised me to call the chemist in Victoria.

Upon doing so I was told $270/50ml + postage ($30), so $300 delivered. First thought "Fuck, it'd be cheaper to go buy an ounce" but have decided to follow through with the process.

 

At this point I have not been told of the recommended dosages, so how long that 50ml is going to last I am unsure.

I am also unsure if I may be able to get my local chemist to get it in for me or whether it needs to come from an approved compounding chemist, solely in Victoria.

 

So the processes have been started. The dr and the prepaid TGA approvals have cost me $550 so far (that's without the script itself), so let's see how much more it's gonna cost

When I have any further info I will let you all know.

 

Just thought others maybe interested

Merl1n

[itchybromusic]

thanks merl 

your a wealth of info 

 

"normal" was a bad choice of words coming from someone ( Me ) who has no idea of this persons day to day dealings with MS 

from an outsider this persons MS definitely seems progressive , i know the person has a script for the CBD oil so i'm " assuming "

the script comes possibly from their treating doctor or at least discussions have been had & other meds taken into account before

prescribing canna , i don't think the codeine based pain meds are used daily & were only used because of the tooth pain which was

described as being worse than giving birth , not sure how much pain meds were consumed over roughly 5 day period with very little

sleep , seems to me those 2 alone could cause a delirium type state in someone if over used  

 

anyway the codeine with CBD oil " problem " sounded instinctively a little sketchy when i heard it but what would i know so i thought

of you , glad i did , thanks for taking the time merl really do appreciate it mate 

 

cheers

itchy    

[merl1n]

No, 'normal' is not a bad choice of words at all. Many people with long term conditions often talk of a 'New normal', that 'New' bit being managing pain/symptoms/medication/life under new conditions that have become normal.

It's FAR from what 'Joe Public' would ever consider as 'normal', but when you're medicated to the eyeballs everyday just to manage, it becomes normal. I don't believe I've had a codeine free day in over 20+yrs. If there was a clear 'problem' with canna and codeine, I would be a No.1 prime candidate. 

 

To be honest, prior to my own situation. I didn't think pain like that existed. I'd had a compound fracture of my leg when I was younger, bone poking out of the skin. That was bad, but nothing when compared to neurological pain. In the hospital they asked me to rate my pain out of 10. I said '15', just WOW intense. As someone said to me 'Brain pain...You don't know it till you've lived it' because it can affect EVERYTHING. MS is one of those conditions that has multiple symptoms, some can be minimal, but some can simply be beyond belief, lots of people have no idea how bad BAD can be. For many years a diagnosis was made via elimination ie If it's not 'x' and it's not 'y', it must be MS. Things have improved diagnosis wise with the advent of MRI scans, where they can see the change in colour of the grey matter, which often occurs with MS. But again, everything needs to be taken into consideration when a diagnosis is made, not solely symptoms, not solely scan images but everything including lifestyle.

 

"...thanks for taking the time merl really do appreciate it mate."

Not a problem Itchy. Time is one thing I have tons of and if I can share my experiences along this route I am more than willing to assist because medical journeys can be EXTREMELY isolating. Just in having someone else say 'Yea, me too...' OHH PHEW, '...so it's not 'just me'. That can be a relief in itself.

 

Merl1n

[itchybromusic]

thanks again merl 

 

compound fracture , i had the same as a young bloke but with my right arm 

same deal though , bone sticking out , blood ect ect too long ago to remember it all now 

just remember a mate i was with at the time being totally traumatized by bone , blood , he took off & ran home the poor bugga   

 

i've had pain dealing with crohn's over the years but not like you describe or what it might feel like to give birth no where near those levels 

although pain is relative to the person going through it i guess , one persons 10 level is another persons 5 so to speak 

 

anyways thanks mate , you always seem to be a positive person which is a credit to you & can only be of benefit dealing with your situation i would think  

cheers merl

itchy 

[merl1n]

 "...no where near those levels, although pain is relative to the person going through it i guess , one persons 10 level is another persons 5 so to speak.

Ohh yea, pain is very subjective. A good mate of mine once told me '...a toothache was the worst pain in the world...' and I looked at him incredulously, like WTF, "a toothache? you're kidding? Right?"

BUT if a toothache is the worst pain he's ever had, then that's as far as his pain rating could register. I told him 'Give me a toothache any day over this pain'. Prior to the start of my neurosurgical journey, my 10 rating was the broken leg. Now, the leg pain might (on a bad day) have been a 5, like I said earlier about this brain pain '...I didn't think pain like that existed...' My sister-in-law had issues with pain and (If I'm honest) I thought it was a 'female issue' ie The fairer sex having a lower tolerance to pain (and so did her dr's). Well, wasn't I given an education in pain. Holy FUCK. I now know exactly what she was talking about. I don't call these 'headaches' anymore, everyone gets headaches, nah, these are 'bolts of agony sent from the gates of hell'.

[itchybromusic]

 'bolts of agony sent from the gates of hell'.

 

gee's mate no one should have to describe pain like that but i guess many do unfortunately 

[merl1n]

 

 'bolts of agony sent from the gates of hell'.

 

gee's mate no one should have to describe pain like that but i guess many do unfortunately 

 

 

Many more than you may think.

I'm a moderator for a rare conditions network. We run sites for 40+ differing rare and often debilitating conditions. It really gives you some insight into what some people are coping with.

Prior to all of this I was a teacher, teaching people with disabilities independent livings skills. Basically all of the stuff everybody else takes for granted how to budget, shop, cook, clean, interact/participate in society etc

Through all of that I've seen the good, the bad and the ugly. NO, I mean the really fuckin ugly of it all and as bad as things are for me, I know they could be a hell of a lot worse and they're not. I gotta be thankful for that.

[merl1n]

As I've said to others before 'It's all shit, it's just the depth that varies...'

[Dingo-2008]

Hi guys,As long as you can keep your head above the level of shit ya doing ok ,Hey Merlin.

 

I fully agree with you crew that everyone has a differet pain threshold .

 

The nero pain is not much fun at all hey Merlin,Itchy,

 

All the best to you both.

 

Kind regards,Dingo-2008.

[louise]

Hey there Merl 

i had something mentioned to  me today in regards to CBD oil that i had never heard b4 & thought i'd ask you about it 

 

sorry if you've already mentioned it b4 

 

some back ground 

A family member with MS ( CBD oil user ) who got a bad toothache & started taking a codeine based pain killer b4 having the tooth removed

after extraction the numbness had past the pain was still present , more pain killers were taken b4 heading back to the dentist 

for a second tooth removal with the same result , once the numbness subsided pain was still present , more pain killers & by this time a few

days with very little sleep , early this morning an ambulance was called because of a delirium state this person found themselves in 

not recognising a carer & long time partner 

 

lots of issues here , lack of sleep , codeine based pain killers , normal MS meds & CBD oil 

 

the carer was told by the treating doctor he would never treat a patient using CBD oil with codeine based pain killer

because some kind of reaction between CBD & codeine which was suggested was the cause of the delirium 

 

now not that i should know this cos i ain't no doctor but have you ever heard of CBD & codeine together having a negative effect & possibly causing delirium in patients ?

 

just curious if this is a actual thing

 

thanks merl 

 

I know you asked Merl1n, but I'll drop my 2cents as well Itchy.

 

Codeine is generally the wrong choice for tooth related pain. Most (pre extraction) tooth pain is related to infection and inflammation. There isn't much space for swelling in the gum so inflammation in this area puts a lot of pressure on nerve endings and can hurt really bad. An anti-inflammatory drug, like nurofen (and backed up by an antibiotic to clear the infection), is much more likely to bring relief to that sort of pain than codeine. Codeine would be good for after extraction because then you are dealing with tissue trauma.

 

The last time I had an abscessed tooth, I was searching for something to kill the pain as I ran out of nurofen... my regular Targin (oxycodone/nalaxone) didn't touch it, liquid morphine didn't touch it. I spent a night with half my face in agony, alternating hot and cold compresses to my face and gargling with Peter Mac anaesthetic mouth jelly. Got the pain back to bearable once I got to the shop for an inti-inflammatory and then to the gp for an antibiotic. 

 

All of the opioid/opiate drugs can cause delirium (particularly in older individuals), but I have never heard of CBD increasing the likelihood of delirium. Codeine is well known for causing bizarre dreams, especially in higher than 10mg doses. 

 

Corticosteroids are another group strongly associated with psychoactive side effects. I get really nasty nightmares (that don't fade on waking, the sort of thing that leaves me traumatised all day) when I take prednisolone. The way I get around that is cannabis. If I have to take a corticosteroid, I also have small nightly doses of canna oil. Canna oil effectively blots out the dreams and means I can get some sleep. So yeah, seems strange to me that a dr is saying that CBD is interacting with the codeine to produce delirium.

 

I hope your family member is feeling better now.  

[itchybromusic]

thanks for your insight Lu 

 

i feel lucky i can come here & bounce stuff off people like Merl & yourself 

she's definitely feeling better & i'll pass on your thoughts re better to use anti-inflammatory meds 

 

i was going to suggest she try oil of clove but thought she would have needed something stronger 

but it sounds like the oil of clove would have been heading in a more appropriate direction , still would

have needed something more & something she ingested i guess but at least it's anti-inflammatory 

 

thanks again Lu