ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Airvtec on January 23, 2019, 06:34:29 pm
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Thought I share my experience with everyone. Hopefully it will help someone out there with similar issues, to understand you are not the only one with these symptoms. If you are more curious about my CBD oil experience, then scroll down.
I had gamma knife surgery in Jan of 2017 for my acoustic neuroma. It was on the right side. All the symptoms I will mention appears on the right hemisphere of my head. After 6 months to a year, I developed a few symptoms, such as watery eye and runny nose when I eat. It was bad enough that I must have tissue paper when I eat. I constantly needed to wipe my eye, and blow my nose when eating. I also experienced slight numbness around my upper lip where it meets the nostril. Over time the numbness got better, not 100% but better. The watery eye and runny nose thing is still a problem.
Then one day, I wasn't tasting much on the right half of my tongue. On top of that, I was constantly having this tinny taste, and coldness on that half of the tongue. I thought to myself, this has to be the worst symptom yet. Unlike the other symptoms, this is felt every minute of the day. A constant reminder that something is wrong. After awhile, the tinny taste went away. I got used to the lack of taste on the half of my tongue. I adapted, and got used to it. It became the norm.
Then on Nov 21, 2018 is when I got the first jolt. The best way I can describe it is like an electrical shock to my face. That pins and needles feeling when your limbs fall asleep, but times 20. That feeling but in a sudden snap, jolt, and shock to the face. Sometimes it felt like my face got hit by spritz of cold water. There was no warning when the shock would happen. At times the shock is strong enough to make me jolt in my seat. Almost always cause me to flinch and shut my eye. A month went by. The surprise onset got replaced with predictable actions that will cause the shock. When I started chewing, rubbing my face, pushing against the roof of my mouth with my tongue, and rinsing my mouth with water. All these actions will cause tremendous pain. The doctor said it is probably nerve pain. Either deal with it or they can prescribe meds. Weeks went by, and I started to learn to deal with the pain. Try to avoid things that will cause it to flare up.
On Jan 15, 2019 I started taking CBD oil. The reason why I started on CBD oil is for anxiety, stress, and help with sleep. Nothing at all related to the acoustic neuroma, nor the symptoms I've been having. To my surprise 3 days into the CBD oil, my nerve pain started to go away. I am now 1 week in with the oil, and I'd say 98% of the nerve pain is gone. I can chew, rub my face, rinse my mouth, and push with my tongue without any onset of the pain. This is definitely a pleasant surprise. I have also noticed the tinny taste is back on my tongue though. Not sure if that is good or bad? Hoping perhaps prolong use will help to get my taste back. I am using 750 mg of THC free CBD oil. I use 5 drops in the morning, and 5 drops at night. I place it under my tongue for 1-2 minutes, then swallow. Today (01-23-19) I increased to 6 drops in the morning, and 6 drops at night. I am hoping the increased dosage will help with my tongue.
I am not advocating people to go try this. I just wanted to share my personal experience. Perhaps it can help others who might want to give it a try. If I'm correct, CBD oil is legal in all 50 states. I will report back at a later date with any progress.
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Can I ask (or did I miss?) what state do you live in?
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I live in California.
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I too had severe pain on right side of face. That was 5 years after radiation (CK). After a MRI it turned out to be Trigemial Neuraglia. Was in meds until that didn't work. 2 years ago I had surgery. Now I have a lot of complications. Mostly synkensis. I wonder if I tried that oil then would my surgery been cancelled. My tumor was leaning on that TN nerve. Also one not heard of that oil. What exactly is it. Continued good health and pain free to all my friends on this site.
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Hi JLR,
I'm sorry to hear you had to go through all that pain. I am not sure if my facial nerve pain is trigeminal neuralgia. But after searching online, it sounds like I might have a mild case of it. CBD oil is derived from the cannabis plant. It doesn't contain the psychoactive ingredient THC. Search for CBD oil on the internet. You should get a lot of information about it. Good luck!
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Thanks! TN is the worse. Of course I thought it was a problem in my nose. Off to the ENT. Then I thought problem with teeth. Off to dentist. Then finally the neurologist. Thanks again.
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I started taking CBD about a month prior to my Translab surgery last July, and I haven’t stopped since. I feel that it helped tremendously with the anxiety, inflammation, and pain. Today, I still use it in the hopes that the limited scientific research on CBD and it’s positive effect on slowing tumor growth is accurate. My surgeons had to leave 20% behind.
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I live in NYS and legally buy CBD oil. My facial nerve pain is unpredictable. I go months without it. But I do use the CBD oil with anxiety or headaches and it amazingly works. I have it on hand for the next time the facial pain flares up. The problem is that though it is legal, it is very expensive. It was easy, but expensive, to get a medical marijuana card. I feel bad for people who can't afford to do this.
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Hi Airvtec,
With a runny nose, metallic /tinny taste in your mouth, I would want to talk to the surgeon if there's a possibility of CSF leak. Please rule that out if you haven't yet.
Thanks,
Colleen
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Hi Colleen,
Thanks. What is CSF leak?
Regards,
John
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Hello John,
Sorry I haven't been on the forum. CSF leak = cerebral spinal fluid.....the liquid surrounding our brain & spinal cord. CSF leak is a post surgical complication. I had one.
~Colleen
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I started using CBD oil about 2 months before my translab last year and haven’t stopped. I have noticed a difference in pain and anxiety and I am also hoping that it retards any regrowth as well.
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Airvtec and JB808
Would you share what brand and types (CBD mg / TCH mg) and their costs, please?
Thanks!
Ant
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I agree with you re CBD I take full spectrum CBD and it definitely helps me. However my nerve pain turned out to be TMJ and a dental night guard (much as I dont like it) did help. Also TMJ exercises- oh and neck exercises make a big difference two. I do these daily. https://www.youtube.com/watch?v=eeGOQfeYUuo
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Thank you for your post, ChrisBowman, and welcome to the ANA Forums! I look forward to seeing more posts by you in the future.
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Hey ChrisBowman, big thanks for sharing your experience with CBD oil and how it's been a game-changer for your facial nerve pain. It's real stories like yours that make these forums such a gem! Can't wait to hear more from you in the future – your insights could be helping so many others who might be in a similar boat.
Speaking of journeys, have you ever looked into info about travelling with medical cannabis (https://releaf.co.uk/education/travel)? It's like a whole new chapter of learning. Adding travel to the equation is like blending adventure with wellness.
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I have found full spectrum CBD with some THC really helpful for trigeminal type pain. BUT my stabbing ear nerve pain turned out to be TMJ and a dental night guard has almost stopped it (suffered 4 years for nothing!).
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My AN is described as ipsilateral to the trigeminal nerve yet MRI again this years shows normal looking trigeminal nerve. I get deep stabbing ear pain though (prior and post CK treatment). What worries me is like you I am getting more trigeminal symptoms that also wake me up. Told its TMJ. However my AN keeps shrinking was same size as you and same fractionated CK treatment. Mine now reduced from 2cm to 12mm. I was wondering if you had ear pain? I also worry since I had Covid after this year MRI that its growing again - been 6 months post MRI and I am post 5 months covid. The CBD is helping the nerve pain. Also- I have no pain in day only when I lie down which makes me think there is compression of that nerve. Keep being told tho that no evidence for that every year. over 4 years and I still cannot lie on that side. Hearing and balance fine, no facial symptoms at all- just stabbing ear pain.
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Thanks for sharing your experience! It's incredible to hear how CBD oil helped you. It can be so frustrating to deal with these symptoms, and your story might give hope to others going through something similar. I also take the strongest delta 9 gummies (https://www.trythecbd.com/products/delta-9-thc-gummies/), but they help me to deal with stress. Wishing you continued relief and improvements!
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Hiya yep am using full spectrum CBD past two nights again with abt 2mg melatonin and sleeping deeply. I take at 10 pm. Will still wake at 3am for pee but thats ok with me. Oh also I really recommend re sleep the Alaskan Bear silk mask with eye indents - Peter Attia recommended it in his brilliant book that just came out: Outlive. I am in Australia - so ordered online from Amazon. I have 3 other sleep masks that simply dont compare.
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It's admirable how you've adapted to the changes and remained resilient throughout your journey. Your experience serves as a beacon of hope for those navigating similar paths, reminding them that they're not alone and that there are effective solutions out there.
For anyone intrigued by your CBD oil journey, there are plenty of options to explore, like organic CBD lube body oil, which could offer additional benefits beyond pain relief. You can check out more about it at https://joyorganics.com/ (https://joyorganics.com/products/organic-cbd-lube-body-oil). Remember, sharing experiences like yours not only helps others but also fosters a sense of community and support.