Hi all. Since a young age, I've had a rare pain condition called Hyperacusis. There is very little in the way of knowledge and available treatments. I believe the pain would be classed as neurological, it does not respond to traditional pain medications that I have tried. Cannabis is the only thing I've found that helps medication wise.
I would like to be fully legal and receive a prescription. I'm tired of living as a 'criminal' to manage my pain.
But researching online has left me a bit stumped. It appears a key criteria is having tried 2 treatments, prescribed by a medical professional, without success. There's only one treatment that audiologists prescribe that has any kind of real evidence backing it, but for me it doesn't work as well as cannabis. The treatment is called Tinnitus Retraining Therapy (as the name suggests, it wasn't developed for Hyperacusis treatment, but is used for it anyway).
I have had this treatment from two separate audiologists, who provided me with the WNG devices and explained the protocol. I stuck with this treatment for several months, but simply found it ineffective.
This is where the issue comes in - there is nothing else that audiologists can prescribe for Hyperacusis, to my knowledge.
How can I meet the 'tried 2 prescribed treatments already' criteria for medical cannabis, if there is only 1 treatment available? There is a surgery that some people get and claim has benefits, but the evidence is not great and the surgery is expensive. I have considered this surgery many times, but decided that the risks outweighed the potential benefits (surgery inside the head carries risk of brain infection).
Sorry for the long post, but it is hard to concisely summarise my situation. I would be extremely grateful for any advice.
Many thanks
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10 comments
Larryhob
- 4y
Rep: 3952 Lvl: Gold
I think the issue may be that you're researching cannabis as a treatment for hyperacusis, which it is not what you're using it as - you're using it as a treatment for pain related to hyperacusis.
The specialists are only allowed to prescribe for conditions within their specialism - as far as I'm aware no clinics have audiologists working for them, so you would be looking to see a pain management specialist for pain relating to hyperacusis, and the evidence you would have to provide is that you have tried 2 conventional (but prescribed) treatments for that pain and have exhausted the conventional treatment path for that pain.
5
Terpman
- 4y
Rep: 4215 Lvl: Gold
Give a clinic with neurologists a call and explain. If there are no recognised treatments for your condition they probably manage it slightly differently.
3
Wendy85
- 4y
Rep: 4019 Lvl: Gold
The best way is to ensure you have 2 prescribed pain killers on paper. I wouldn’t contact the clinic as they will probably say yes, take your money, have the consultation, to be told no after the MDT meeting.
1
GlenBot
- 4y
Rep: 4195 Lvl: Gold
Surgery isn’t suitable for you, therefore you have failed that as a treatment option - which means you fit the criteria of having failed two imo.
This is how ‘treatment failure’ is viewed in my condition - whenever a treatment option is not an option, it’s a failure.
1
Kartin
- 4y
Rep: 3800 Lvl: Gold
Sounds like my friend suffers the same type of thing as you, she’s gonna give it a go, so I’d say go for it, definitely worth a try
1
Davidt
- 4y
Rep: 4008 Lvl: Gold
I have chronic pain caused by a form of arthritis which apparently is not normally painful and found mostly during post mortem! I tried TMCC but found that they were only interested in prescribing the cannabis as quickly as possible (which might suit some) I am now with Leva clinic who are pain specialists and for me the difference is amazing - can't recommend them enough for pain. The consultants are pain specialists as well.as.having an interest in cannabis plus the prescriptions are done quickly and they check stock before they prescribe so I am always given a back up plan should the oil I use go.out of stock. (Happened once). If you haven't chosen a clinic yet as your main issue is pain I would give them a go.
1
Ellisahen
- 4y
Rep: 5783 Lvl: Gold
Two medication is only a guide not the law it’s worth applying can only say no but yes hopefully
1
brianuk
- 4y
Rep: 4551 Lvl: Gold
I would think, that the two tried and failed treatment would have the caviar of available treatment(s). To say if only one treatment is available you've exhausted all other possible routes.
Y advice is to contact a clinic and toll to them, see what they think.
1
Spaceman7
- 4y
Rep: 3246 Lvl: Gold
If you have chosen the clinic you want to go with, you could always give them a call or an email to have a chat about it before signing up for a consultation,
But I'd have thought that because you have tried pain medications in the past for it with no success you should qualify.
1
Runt
- 4y
Rep: 5031 Lvl: Gold
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