Nothing has worked, except being asleep

After my last post on my MVD, I quit posting on the site…because of its failure and that I ranted had worked. It didn’t work. I saw my surgeon on my birthday 9/10/15 and he said I have TMJ and I should seen a certain dentist. He gave me a pamphlet and that was it. After not hearing from the dentist, I googled his office to find out they don’t take any insurance. I wasn’t driving 60+ miles after the surgeon had done a rhizotomy and MVD + partially severing my 9th nerve. Then says I have TMJ. I’m going to Duke now, waiting for approval on a capsasin patch; which they’ve denied me once already. This year, I came down with shingles and it went into my eye. So, now it’s PHN, TN, ATN, GN and CNS demeylination disease. How can that happen? But…how did this pain happen? I’m on Vimpat and Neurontin. Calan SR for BP, Celexa, and as needed Clonzapam and Demerol. After everything, I still hurt. My ear, my teeth, my chin, my jaw, my eye… I would cut off my legs to stop it. 44 years old and my mind is like a 25 year old. I want to play. Fish…garden…work again…walk my dog through the woods. It’s a deal with it situation to me now. My meds usually help me sleep a lot. That’s a relief. I hold out hope that things will improve and I’m with the right doctor. There will be no brain surgeries again for this girl, but I will take an amputation. (I’ve got to be cynical sometimes, because I would be even more crazy if I wasn’t.) Thanks for listening.


Instead of Clonazapam as needed, can you take it regularly? It’s the only thing that has helped me and if I only took it sometimes, I would be going through withdrawal on the “other days” and that means pain pain pain. Just an idea worth discussing with your doctor. It’s REALLY good at calming down all the nerves in my face. If I miss a dose, my whole face is on fire and electrified. Without it twice daily, I was like you— now I have a pretty normal life and can just ignore the baseline pain (3 or 4 out of 10)…

Hey crazy lady, your not alone . I’m sorry you feel so badly this condition sucks and I completely understand what you are going through. Sleep is my only piece. Unfortunately I need multiple meds to get comfortable enough to fall asleep due to the pain . I feel your anxiety and pain of missing your life , working going for walks making plans for anything besides managing your pain. I had failed mvd almost a year ago , and like you I will NEVER have another! I’m wondering about clonapan taken regularly to stay on top of anxiety ,if that might help?? I’m seeing my dr tomorrow because I have been feeling horrible anxiety and was planning on asking her about it? I hope you feel better I really do!

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It’s going on 4 years for me. I started feeling the electric shocks in my forehead the year before I was going to retire and it just got worse. Finally on a Saturday I was doing so poorly at work ,my area supervisor sent me home. 27 years and I had never missed a day of work. I was given my vacation due and basically put out to pasture. Like you I had many things I wanted to do but its been a never ending trail of doctors, pills, and pain. My pain will settle down for several hours every day but my hands shake in fear of being caught off guard. I do find that if I can do yard work or keep my mind busy somehow, it seems to help, Eating is a real problem for me. If I move my jaw muscles to quickly,I get extreme pain. I’ve lost 45 lbs since I retired, but a lot of my old clothes do fit me now. I don’t know how long I’ll be able to do this,but when I read a post like yours it gives me strength. Hang in there. We live in an age of astounding medical research and refinement, so maybe tomorrow some one will find the right key. Until then, SWEET DREAMS.

Hi crazylady, I can understand your name on here when you’ve been through all that, I’d be at my wits end to then be told TMJ. Don’t want to be a doom monger, but when did meds actually cure anything?

Assuming you’ve had a clear MRI, (short of vascular compression, hence MVD ) I’m guessing you also have neck tightness/ pain, but possibly the least of your symptoms which is why it is not mentioned.- could be wrong, not the first time:(

The other thing I might mention which may be of no help, but I figure an important consideration- what was your situation at the time of onset of symptoms, as in why me then? Stress, family, work, relationship, eating rubbish or a combination?

Whatever the answer, the above in the absence of dis ease is the cause of most illness.

Regardless, wishing you well.

Good Morning Aribon, I will speak to my doctor about this. He does give me .25 mg instantly dissolvable Clonazapam and 1 mg tablets. I just know that when I take it with all of my other meds, it knocks me out. Which isn’t always bad. :slight_smile: I’m sure I’ll develop some tolerance so I can take an active role in this life I have been given.

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Hi Liz, How did your doctors appointment go? Any pearls of wisdom to share? :slight_smile:

Yes…I feel everything you are saying. I’ve lost my appetite and my husband tries to help by nagging me. I know he is right, but my stomach just isn’t feeling it. Though I haven’t lost any extreme amount of weight , I range from 130 - 145. Chocolate is easy to eat I’ve found. :yum: And the anxiety caused from feeling good is crazy. I used to think when I have a few good hours, I’m fine, there is nothing wrong. Then bam…I found the stabbing, deep bone ache again. So, now I know when I have good time…it is coming. But, I now know to just be happy I have this moment. I know how you feel.

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Hi Aiculsamoth, I know meds will not help me 100%. I know they help though. I know going through ulcerative colitis with my daughter, they were a god send. But yes, my MRI showed vascular compression on the left and right side. I only had the MVD for the left side, which was my biggest complaint. Everything else on the MRI was okay. I was seeing a chiropractor (because of sciatica) and having a massage about twice a week before this happened. Medically, my problem was I like cheeseburgers…high cholesterol. Which I managed by changing my diet. I had just gotten married in August 2013, and had the best honeymoon hiking the mountains in NC in September 2013. Two teeth prepped for crowns in October 2013 - and there it is 10/11/13 changed my life like I never imagined it could. I had a great job with excellent pay and a very flexible schedule. Though I do have stressors like most, I do not live in a 3rd world country, and have to live as so many poor souls on this earth do. So I kind of slap down the stress factor. I think this is how I push my stresses aside, empathizing with all of the horrible things other people have to go through.
I appreciate your post. I love to think, I pondered on this one, and probably will continue to.

I take .5mg twice a day and feel no sedation whatsoever. When all this started in 2002, I took 3mg a day and have been able to taper down to this minimum dose to cover the pain. Two summers ago I got down to just .5 mg a day, but after a year had to bump it up a bit. It’s NOT for anxiety. It’s for pain, and it works for me. Wishing you peace!

Hi Crazy lady,

I like the fact you had the Best honeymoon, and remember it as such, To my regret I/we didn’t and weren’t in a position to do so at the time.

Dental issues seemingly are a factor, and I’m not sure as to now, but on previous sign up to forum the question was asked.

Whilst I’ve been ‘corrected’ in the past, and recognize dental injury can cause TN. I’m of the attitude that more often than not it places stress on the neck due to the procedure and hence TN. As such I feel it is worth consideration

Yes up your clonazepam! I take .75 mg a day and it’s my saviour for pain.My doctors don’t like this drug but for me it’s a godsend and stay on it I will until I am pain free someday.I have come off it and back on it without too much trouble.Good luck!

Hi, not so great she prescribed me something called busperone, didn’t agree with me at all… She referred me to another Dr. So I’m gonna have to see another doctor… All I do is go to Drs and nothing changes . I think she’s afraid to treat me because I’m on some pretty strong meds for pain. I guess I gotta figure out other ways to control my anxiety on my own … I can’t handle one more doctor that doesn’t no what to do for me…she is my primary physician and said it was out of her range of expertise?

I totally understand. While my primary was very concerned and understanding, they didn’t know what to do either. She did treat my anxiety with Valium. I would print off information from PubMed or the Mayo Clinic, highlight what meds I needed and my primary would try.The first neurologist I saw was a dope. My husband and I were outraged as we noticed walking out that he is a sleep specialist. Not many neurologists even know how to treat us or want to. So, I looked up the Trigeminal Neuralgia treatment center of Va. That would be the surgeon who told me I had TMJ after 2 brain procedures and seeing 12 dental professionals who never said I have TMJ. That’s why now, my husband and I just drive 3 hours to Duke University. The neurologist there gets it and does treat me as best he can. I hope you can find someone kind enough to understand our pain.

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Thanx crazy lady, i don’t think you’re really all that crazy I appreciate your words of wisdom! You have been through sooo much … I can’t imagine how you did it! Other than your a very strong woman with a lot of fight in you! My m v d surgery was the worst thing I have ever experienced I got pneumonia 2 was after surgery thought I was going to die! And you have had two brain procedures plus all the other stuff , well I’m impressed your very courageous! God bless

Who is the neurologist at Duke? I’ve been through the wringer, including MVD in NY in May 2015 and a peripheral nerve stimulator put in april 2016 - helped some, but then moved and has caused terrrible veritgo. I’m waiting to get it taken OUT!. Despite my neurosurgeon’s belief that it’s a mistake for me to take it out - he thinks he should “fix it” because it’s helping. (Of course, he also said that the PNS NEVER causes vertigo). I’m looking for someone who can think of me as a whole person. By now, what I do most is drive to doc appointments, wait for meds, wait for appointments, fill out forms… etc. Go away on vacation sounds fabulous but how can i make plans if I don’t know whether I’ll be able to get out of bed? (That’s the vertigo that got me). And once you’ve had chronic pain for so long - mine is 20 years - doctors seems to ignore things like “oh, you lost 10lbs in three weeks… uh uh…” That’s about it.

Hi KailyKay, I see Dr. Wolfgang Liedtke at Duke. I did have my primary forward a referral in for me. Be ready for all kinds of questions and bring all your documents. Also, be ready for the wait, even if your appointment is at 2; you will not be seen at 2. And he only sees people on Friday. If you Google him you’ll see he is a very busy fellow. However, he will sit in front of you and focus on you. You will not feel rushed at all and you will know he is thinking about your problem only and the best route to take. That’s how I feel when I go. The vertigo must be horrible. I’ve not experienced that, thankfully. Sounds kind of like my surgeon telling me I had TMJ after the surgeries. I felt like he just didn’t want to see his surgery as failed. It’s like I know they are incredibly smart, but don’t tell me how I feel…you know? Because every person on the planet responds differently to procedures and medication. Dr. Liedtke specializes in neurological pain management. If he feels surgery will be of benefit, one of the neurosurgeons at Duke would perform it. I’m not in it for surgery, my mind just can’t wrap itself around that again. The meningitis afterwards…woohoo, that was an experience. I just need to live as best I can, because for me there is no logical way out. I have a husband, 3 kids, 1 granddaughter…family, I love them all so much and I’ll be damned if this pain will cause me to be selfish enough to leave this world by my own hands. Though I entertain the idea. Sleep is the best I get, and it’s good enough for me. Give the doc a try, what do you have to lose? Cause you sound like me…I feel as though I’ve lost it all already. Where did “I” go? I miss the old me so much. I hope your vertigo can be treated. I’m not a big prayer(my mom says that’s a problem) :slight_smile: but I will think of you and send loving vibes your way.


Dr. liedkte is my neuro.  I fly from Birmingham to see him.  Sadly, I had 4 unsuccessful MVDs in less than 3 years starting in 2012.  All were performed across the country, but I sadly have one of the most complex, severe cases ever studied.  I work with a foundation and the Brain Institute in FL for a cure.  Wolfgang is a SUPERSTAR and I communicate regularly.  He has led me down some great paths and is one of the most knowledgeable and caring doctors that you will meet.  More importantly, he is one of the world's top researchers for a cure.  The numerous doctors that I have met the past years rave about him.  My pain level never goes below a 9 and I am only 38 yrs old.  Together, we are working very hard to manage my pain as it has completely changed (sometimes ruined) most aspects of my life.  He reencourages me when I'm at my lowest.  You are extremely fortunate to have him as he does not accept that many new patients right now.  I wish you nothing but the best and hope that y'all can manage your pain.  Btw, I went to Carolina and I am a huge Heels fan and it PAINS me to go to Durham and especially to have 2 of my MVDs there.  I did wear my Carolina shirts there which the nurses love.  That shows you how much I respect Dr Liedtke and my other teams of doctors.

Hi there,
I’m just curious, did all your symptoms appear within days of your dental appt or did they take months/years to develop. I’m a newbie to this new horror in my life after a pulled tooth on 1/27/16. I’m 47 years old. I’ve been told 5 different diagnoses from 5 different doctors. Crazy stuff. I wake up each day and the pain is like a three ring circus: back of head aches, earache, eye tightness, chin zaps all taking their turn. I do get an hour here and there of no pain during the day.

I’m so sorry you are feeling this pain. My symptoms did develop right after my crown prep on the left side. I did not have tinnitus, that happened after the MVD. I recently came down with shingles on my forehead and into my eye. My new doc is of the opinion that through the dental procedure it could’ve caused the chickenpox virus to be reactivated and that is now one of my newer diagnosis is Post Herpetic Neuralgia. My eyes are now affected sometimes, usually by bright light and other times stabbing pain. I’m here for you if you need a sounding board. Lord knows we all do from time to time. - Sending my best wishes