I’m so tired of the side effects, I’m forcing the issue today. I landed up in A&E again, and again there’s nothing the can do. The ambulance crew gave me two shots of morphine, and the GP has prescribed Oramorph.
I’m going to try some weed, weed, have a joint, cannabis… Call it what you like. The constant pain and never knowing when I’m going to flare again is getting to me. I have Geniculate Neuralgia, and it’s killing me.
I hope you find some - without trouble!
Look up how to make "special butter" --- then you can bake it into things - and it last longer than smoking!
I have tried weed ( when I can get it ) and there is no question it helps take the anxiety away and gets me back to being " me" for a few hours. Haven’t noticed it has done much for the pain. The Carbamazepine has changed my personality drastically but does help the pain for a few weeks until I get used to it then up the does another 50 mg twice daily, more personality changes and so on. I wish my Doc had the balls to recommend weed as it truly does help.
since you’re on the UK, I don’t know about availability but there are a couple of states here in the Us where it’s approved for any use. if you have trouble getting it, perhaps you can try online? I wish you good results, as I know how maddening both disease & side effects can be!! keep us posted.
mrl
Please let me know if the cannabis
helps. Medical marijuana looks like the next best pain solution.
Cheryl Moyer- Peele
sooooo sorry for your pain. have any drs suggested surgery? how long have you had this? are you under neurologist care?
there might be a micro vascular decompression for that cranial nerve???
are you on maint meds?
i know the frustration of trying anything to get out of pain now at year ten with two separate neuro conditions on either side of my face.. if marijuana helps than at least you get a break til you can figure out something more long term or perm. in relief department.
i started magnesium with calcium today after reading how germany uses magnisium iv drips in ER when you come in with horrible nerve pain.
i had shingles on my ear drum so me years back the pain is horrific!
will be praying for relief for you and blessings for pain free days!!
julie
Recently tried cannabis oil topically for what feels like tooth root (altough there is no tooth) pain. I just dab a little oil directly on my cheek over the area I feel the pain....and it WORKS! Within minutes the pain calms down and then goes away completely. Highly recommend trying it, if you can get it.
oh UMPC does some type of procedure on nerve in ear...google UMPC hosiptals they have facilities for all kinds of things all over. I think Pittsburgh is there main campus.
http://www.bangor.ac.uk/mindfulness/about.php.en
http://www.breathworks-mindfulness.org.uk/meet-vidyamala
Hopefully these links may have something that can help you a little.
I've been able to come down with my meds ( side effects were almost worse than the condition itself) to minimum instead of maximum dosage, using some of these techniques.
And to put it in context, I have type 1 and 2 TN, plus Geniculate Neuralgia (your post just helped me realise that because I had to look up the definition of GN and discovered it was exactly the symptoms I've been suffering as well... so thank you), and it's all resistant to medication.
Take care
Shame on them for not knowing what to do! They can give you enough IV meds to knock out the pain for 8 hours or so. That often breaks my cycle of severe pain, exhaustion, sleeplessness, more sensitivity due to the severity of the pain, etc. Then my regular meds seem to work better. If they are saying they can't help you as a chronic treatment, that's probably true. There are TONS of combinations of medications that can be tried until you find the ones and the dosages that are right for you. Most combinations consist of an anti-epileptic (stops the nerve pain and shocks), a muscle relaxant, and pain meds. Is there not a neurologist near you? There's not one in my city, so my Dr. and I decided to research and keep trying different things. Trileptal seems to have the fewest side effects of the anti-seizure meds. We all feel your pain, literally. Hang in there, there will be an answer to your pain. Yes, MJ is used by many too. And like KC Dancer said, the way to make it last the longest is to make butter out of it. It lasts so much longer. Some use a tincture made from MJ, some use a vapor volcano rather than smoking it, much safer and more effective and makes it last much longer. And of course brownies etc. but that uses it up quickly. Do they have medical marijuana there? If so, you have access to dozens of different breeds, each one is best for a different symptom. I hope you can get what you need without any trouble.
Sadie, if you reside in an area that does not allow "weed", then your doctor can not recommend it ... he may say something like "off the record, i recommend it"
Sadie said:
I have tried weed ( when I can get it ) and there is no question it helps take the anxiety away and gets me back to being " me" for a few hours. Haven't noticed it has done much for the pain. The Carbamazepine has changed my personality drastically but does help the pain for a few weeks until I get used to it then up the does another 50 mg twice daily, more personality changes and so on. I wish my Doc had the balls to recommend weed as it truly does help.