Craniotomy & 6 rhizotomies & still in pain

I’m at my wits end. I’m just so tired of the pain. How can anyone be expected to live like this? My neurosurgeon said I need to start seeing a neurologist now to manage pain with medications. I’ve tried baclofen (sp?), gabapentin, carbamazepine, lyrica. I think that’s all. One neurologist I called and told I had TN and would like an appt and after explaining my situation was told they don’t deal with pain management. Really? One can get me in in Dec. I actually have an appt with a neurologist tomorrow. It is so frustrating. Has anyone tried medical cannabis? I’m hoping somebody has some answers. Please.

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Hey Phoenix,
Firstly, I want to say that your frustration is fairly normal, well, it’s normal for me.
Unfortunately TN can be one of those conditions that can have a ‘fuzzy’ diagnosis. Often it can be more a case of ‘Well it’s not ‘X’ and it’s not ‘Y’, so it must be TN’ or a diagnosis by elimination ie ‘If we eliminate all of the ‘known’ conditions then what’s left is TN’. I say this because TN has been one of my many ‘Pseudo diagnosis’. For many years I was having unexplained pain, told it was everything from growing pains to a psych issue. Then they found another possible cause… a brain tumour.

I had a craniotomy to remove a portion of the tumour. The surgery was regarded a success but OHH BOY, my pain levels were off the scale. The surgeon’s view was ‘we operated, we fixed’ but this was FAR from fixed. I was sent to all sorts of specialist, dr’s and wizards. I saw dentists, who removed all of my top teeth. I saw acupuncturists who stuck me with needles from head to toe. I saw manipulative physio therapists who twisted and bent me in ways no human body should be contorted. Then I was hooked up to a TENS machine. Ohh hell no. Never again. I’ve decided I don’t like electrical current passing through me.

Next came the medications, ohh yuck. I was up, I was down, my mind was in a constant fog and the nausea, just chronic. I was on that many meds I rattled like a pill bottle with every step. But then when none of that worked the medicos decided to blame me. Seemingly, they had decided I liked the medications too much and they stated I simply had a low tolerance to pain and I was just addicted to the meds.

Then they decided I needed another neurosurgery… …and another… …and another. I’m up to 6 at last count and to be completely honest, I’ve given up on getting any great answer of the cause/effect for my ongoing issues. I’ve investigated every option every dr has provided or suggested, you never know that one thing that I thought ‘nah that’ll never work’ could just work, but none of them have been my ‘Key’. So I’ve learnt to manage the best way I can and for me that’s a combination thing. Medication management, activity management, light management, sleep management, diet management etc and each and every one of them can have a variable impact. It’s no fun.

Yes, but before I comment here I need to say that the rules and regulations in regard to medical cannabis vary considerably from country to country and state to state. You should always follow the rules in your area. I’m in Australia and the rules here regarding medical access are rather convoluted and costly. Just to obtain the approvals for it cost around $800 and that’s even before getting any medication. We can’t just go to the local dope shop and buy our meds, no ‘Medical Cannabis Card’ here unfortunately. It takes around a week from ordering, via a registered and licenced pharmacy, to receive it. For me, I find cannabis not to be so much a painkiller, but it assists me not to be constantly thinking of nothing but pain. It allows me to think outside of BANG, BANG, BANG…
For me, cannabis has not been the ‘Magic Bullet’ some people profess it to be, it helps but it’s not my key.
I use it in combination with the pharma meds, but in using canna, my use of the pharmas has reduced and for me that’s a huge plus in itself.

Merl from the Modsupport Team

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Hi there Meri,
Thank you for responding to my post. I can’t believe everything you have been through & you still have pain. I am willing to try anything. How do you live with the pain? Mine has been going on since 2014. Should I go to one of those pain clinics? I am in Maryland in the US & applied for the medical cannabis card last week. This just feels so hopeless. I don’t think anyone understands TN when it’s explained. I feel for you. I have not received the reactions you have. My story: For 2 years i went to a Neuro who only managed the pain. No testing at all. Went to another one who sent me for MRI right away which found a brain tumor pressing against the trigeminal nerve so I had the craniotomy. Pain was back in 3 months. Neurosurgeon said it was because the tumor involved the Meckel’s cave. So then the rhizotomies started. Had my 6th & last one in May & 3 mos later the pain started & he told me to get with a neurologist to manage the pain with drugs. That’s where I am now. Taking carbamazepine, lyrica, & now sertraline. I just don’t know what to do or where to go, I feel lost. There is no way I can live with this pain for the rest of my life. It took me over 2 hours to eat a small salad for dinner today. It’s just unbelievable what we deal with.

I have had amazing success with using the lidocaine patch for TN2 – I apply the patch along the nerve in my face that’s causing pain and the lidocaine helps reduce it. I have also had amazing success with high doses of vitamins and minerals as adjunct therapy to daily drug support. I’m currently taking gabapentin, B12, D3, C, and magnesium. Check out the alternative therapy posts for details and other stories and helpful tips.

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And I think we all get to that point. I’ve often said ‘If someone suggested stand on one leg, facing north and singing Kumbaya would help I’d give it a go. I’ll try anything’. I went through a process of elimination. If someone suggested a treatment option, I gave it a go, followed it through. That one thing I thought ‘Nahh, that’ll never work’ may well be that treatment I’d been hunting for, so I trialled them all. My only recommendation in hunting for that “key” is to keep it all well documented. Who you see, what you saw them for, their specialisation and their recommendations. If you have a scan or a test, get a copy of the reports for your own file. Document it all.

Yes. You never know, someone may just have that ‘Key’ you’re hunting for. BUT do not go into it with any expectations. If you find your ‘key’ that’s a bonus, but going into it with the expectation of getting answers, only to find no such answers can be extremely demoralising.

And so did I and it REALLY dragged me down. I had to learn (the hard way) that thing called “Acceptance” and that was a very bitter pill to swallow. I didn’t want to accept THIS. Who would? so I fought against it. I tried to convince myself that by pushing my limits I was building stamina, when in reality I was driving myself into the ground. I couldn’t see it, it was actually my wife who could see it and she sat me down and told me directly “STOP IT”. The more I pushed my limits, the more my body pushed back. I might push to complete a task in a day, great, but then it would take me 2 days of agony to recover. And those 2 days were awful for anybody around me.

If anybody tells you they know all about it and/or they have all of the answers… It’s a lie. There are simply too many variables in regard to cause and effect for anybody to know-it-all. And it’s the same with treatments, what maybe a miracle cure for one individual can be of minimal benefit to another. This is why I speak about finding your “Key” YOUR key, what works for you. I had a neurologist who made out he was going to be my saviour and yes, he ‘knew all about it’. But when his treatments (Including Botox) did not have the miracle cure he professed, he pointed the world of blame at me. Like I choose to be in agony, just madness. Who would choose “THIS”? Not me, that’s for damn sure.

Merl from the Modsupport Team

Thank you again, you’ve given me a lot to think about and I appreciate it. While I want to say it’s great speaking to someone in the same shoes, I do not wish anyone to be walking in these shoes. Thank you again.

Hi Azurelle,

Thank you for replying to my post. I am going to try B12 just from my reading on here yesterday. I had no idea something like that was helping some of us. I’m already taking magnesium daily. I’ve never been told whether my TN is type 1 or 2, but I am guessing 1. I’ve had bolts of pain that almost knocked me to my feet, feeling like someone took a railroad spike and just drove it in my face, sometimes wrapped in barbed wire, then sometimes twisting it. I’m hoping some of the alternatives are working for TN1. I will look in to the lidocaine patch. None of the medical people I’ve spoken to mentioned that. I am in the US. If you don’t mind me asking, are you in the US? I’m wondering if that is something offered more abroad than in the US. I’m at the point I would eat dog poop if it would help me, yes dog poop. lol

I’m in the US — you can get a 4% lidocaine patch over the counter at any drug store. The prescription strength is 5% so I personally think it’s worth trying over the counter.

You can cut the patch, I usually use 1/4 of patch cut into a strip and then I place the patch strip along the nerve branch that’s firing. Check with your local pharmacist on this but be aware the dosing of 12 hours on 12 hours off is for wearing the max dose, which is three full patches at a time. I’ve been advised by my pharmacist that because I’m only using about 1/4 of a patch at a time I can leave it on however I want – but again, check yourself with your pharmacist.

My doctor, who I really like and have been with for 20+ years never mentioned lidocaine patch, a friend of mine mentioned it as she was prescribed it for MS nerve pain and Shingles nerve pain. We chatted about it and started thinking why wouldn’t I try it? I talked to my pharmacist friend, gave it a try, and found it to be a life saver. I never leave home without it in my purse and if my face even vaguely feels “funny” and now use the patch.

I started B12 and D3 about five years ago based on information from this site and I have not have a bad flare since. Can I swear it’s the supplements? No, as I also take gabapentin. But will I stop the supplements? NEVER.

My fingers are crossed for you,

I have had my TN since 2002 and I’ve gone through six or seven different injections then I had gamma rays to the back of my head I did the MVD I also had gamma rays to the side of my face I’ve done acupuncture I’ve also had the electric stents in my face which like you said was the worst had to turn it so high my face was contorted I could take the electric going through my face I’ve tried the 4 main medications for TN and had bad reactions I’ve tried the lidocaine patch didn’t seem to work for me but I hear that it works for some people it’s worth trying and I’m like most people I will try anything the only thing I have not tried is severing the nerve because it’s a 50-50 chance that it will work and a 50-50 chance that my face will look as if I’ve had a stroke I don’t know if I’m ready for that part yet I do take a lot of supplements for the disease I was told 400 mg twice a day vitamin E also 800 mg of folic acid and B complex I hope they’re helping me but I still have the pain there’s not much I can do about it I take OxyContin and oxycodone for my pain it seems to manage it I do get pain at least three times a day sometimes more and at least once a day it is so severe that I almost don’t think I can take it anymore I do use heating pad to help with the pain I will go to the ER about 3 to 4 times a year to get an injection of Toradol that seems to stop the pain for me but everybody is different I’ve even tried the marijuana and that didn’t seem to help me but I do take it at night to help me relax and sleep or if I don’t have a marijuana I will take melatonin at least with that I will get about 7 hours sleep I think sleep is very important and trying to stay active I think helps I hope the best for you and I understand the pain that you’ve been having I do go to a pain doctor not a neurologist I will see a neurologist maybe every 4 - 5 years just to see if there’s something new that can help me out there because like you said you’re willing to try anything to get this pain to stop I do live in the USA

Thank you for responding. I really appreciate everyone’s help. I’ve had trouble even getting a neuro to see me for help with pain management. Even the one I got an appt with told me he doesn’t do pain mgmnt. He’s the one I saw in 2016 who sent me for test & found brain tumor. I’m in Anne Arundel County, Maryland. Would your doctor happen to be any where near me? I’m going to try the B12 & D3 & lido patch.s The pharmacist I deal with is really cool as well. She goes out of her way to help. I’m on carbamazapene, lyrica, & sertraline. The sertraline is what the neuro just put me on. It has helped with the really bad thoughts. I think it’s taken some of the edge off some of my episodes. Mon & Tues it was almost non-stop, but yesterday I ate my lunch almost like a normal person! I’ve tried gabapentin with no results. & baclofen. I’m happy you seem to have found your key! My fingers are crossed for you as well. Sending you a virtual hug!

I know 2 people (1 is a doctor) who have found much relief from cannabis. Keep trying and exercise spiritual help.

I use cannabis tincture. I find it does not take away the pain. The only way I can describe it is that it puts the pain aside so you kinda can ignore it. It makes me “wiggy” so I can’t drive or really do much. But, I can sleep and sometimes even eat solid food. I think it helps. I understand how all our meds make us jittery, and unsteady. I act like I am drunk. This “thing” is unbearable. It is good to hear and share the misery! Sending Peace to all of you.

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Hi! I hear your frustration and I was there…I tried at least a dozen medications over 5 years with at least 6 different doctors. Spent thousands on unnecessary dental work and therapies that did not work. It was not until I kept a very detailed journal of everything I did, ate, environment etc… did a patter show up. My pain flared with position. If I had a massage, lifted heavy things, used a computer, talked with my head turned. I found steroids stopped my pain so that was a clue that when the nerve and muscles inflamed in my face my pain went up.

I started to find small solutions, avoiding thing that spiked my pain, finding a doctor that would prescribe steroids and muscle relaxants …eventually leading me to the source of my trigeminal nerve inflammation something called Eagle Syndrome. A ligament that turned into a bone and pressed into my trigeminal for example when I had a massage or if I lifted heavy weights or if my head was turned… it all finally made sense. With the bone removed I was then treated for TMJ and now I can use my bag of tricks of medication as need and accommodations to live a “normal” life. This is a journey and in most cases not a light switch that can turn off the pain. I suggest to everyone if the normal medications don’t work think out of the box because you might need to do a combo of therapies or treatments together to get to where you want to be… there is hope…

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Like many others on here, I’ve tried a variety of therapies over the years, have gone down a number of unfulfilling paths, been over-promised relief by doctors and hawkers alike, but I am managing to stay off disability for the time. I’ve tried all the drugs you listed, but am currently on Lyrica, Cymbalta, and Xtampza. My TN is caused by recurrent neurofibroma tumors on my trigeminal and optic nerves. Despite 5 surgeries, the tumors persist, thankfully always benign.

I use a combination of pharmaceuticals and cannabis to manage the pain. Tinctures and gummies haven’t done much for me. Smoking helps a lot with my more dull and ever-present pain, and can help with migraines, but it can increase my electrical shocks or stabs, especially if you do not stay hydrated. Cannabis also helps me when I’m feeling down.

I recommend trying some, but go in with low expectations so you will be surprised when something works. Also, pay attention: Indica is for when you want to relax and/or sleep. Sativa is for when you want energy.

Hi Gilbert,
I’m definitely going to give cannabis a try. I’m waiting for my medical cannabis application to be approved now. I’m trying to keep expectations low so hopefully I’ll have a nice surprise. Take care!

Good luck with it, Phoenix! I think Jeff Fogel of the FPA wrote a section about it in the new book published by the FPA. Contact them for info & how to get it. There are many different mixtures they can you give you, so getting what works for nerve pain can be tricky. Watch what people tell you what type to get. Learn as much as you can before you delve into it. I tried it but got a mix that was terrible & didn’t help. Jeff knows a lot about it. Let me know how it goes. And pray. We all need that.

I was diagnosed in 2000. I have such sensitivity’s to so many medications that I have given up on taking the meds. I have had Gammaknife, Mvd surgery, chiropractic care, acupuncture, injections, etc… Nothing has worked. I now use marijuana medicinally. It helps a lot. People do not understand. It’s so frustrating. I will not let any dentist give me a root canal. It only makes it worse. I am considering having all my teeth pulled and getting dentures. I have ear pain, teeth ache pain, numbness from the MVD surgery temple pain etc… I stopped going to the neurologist. My surgeon was a total jerk. So I’ll never go back. Being in pain all the time is just unbearable. Unfortunately there is no cure. I’m glad I found this group. At least I know I’m not alone. It doesn’t help the pain but at least I see that I’m not alone.