Neuralgia, head pain

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Regular Member

Date Joined Jul 2014
Total Posts : 473
   Posted 7/29/2014 1:53 PM (GMT -6)   
Hi Everyone:

I am new to the boards. I have multiple problems. I have posted in Chronic Pain, Osteoarthritis, I.B. and Fibromyalgia.

My head pain/headaches are believed to possibly be caused by the Osteoarthritis in my neck. I have been living with daily chronic head pain for the past 12 years. I am in Canada. I currently see a Headache and Pain Relief Doctor as well as my Family Physician. I am referred to Specialists if the Family Physician deems it necessary. My Headache Doc believes I have combination headaches. I have had 2 migraines with aura many years ago and the head pain I have now is not the same.

The pain began at work one day. I was looking down reading and I began to feel pressure in my head. That was the only way I could describe it. At the time I worked in TO and my Health Care Docs were all in TO. I am on disability now and Docs are in the GTA. I had a CT Scan which recommended an MRI. They did not feel that it was a stroke. I had the MRI done in the US as TO had quite a wait time. I have had another MRI on my head since. Both see foci in white matter. The Technician said it was not the same as those seen in MS patients. The Technician ruled out intercranial hypotension and no tumors. She did suggest that they are seen in Migraine patients.

I was referred to a Pain Management Clinic in a TO Hospital. I was being cared for by Neurologists and at the time the Clinic did not have any Rheumatologists on board. Head pain came first for me. Neck pain followed. The Clinic had an X-Ray done on my neck. The Technician had me move in so many different directions. I quickly went downhill in the week that followed. I could tell I could not drive properly and on route home I hit nerves. Pain shooting up into my head. I had to stop driving. I was off work for a month. I did go back to work but I was still in pain. The Clinic diagnosed the Osteoarthritis in my neck. The Clinic put me on Vioxx. I was taking up to six Xtra strength Tylenol to try to get through my work day. I mentioned it to the Neurologist and he said no you can't take so much Tylenol - cut down to maybe 2 (even though I won't want to). I follow all instructions. The Neurologist then prescribed Topamax. He said it would stop the pain and as it might make me nauseous I might lose weight. I was so hopeful of having the pain stopped. Unfortunately, the Topamax caused worse head pain. The pain was squeezing all the way up into my head. Not sure why it did not work for me. I stopped it. Next, Fentanyl Patch. Was using it for awhile but I got very sick and stopped it. Next was Oxycontin. I was spaced out of my mind and could not sleep. I stopped it and a new Neurologist that I was assigned to said he would not try any more pain meds. My last day of work I just could not type anymore. In route home I hit nerves again. I was not able to return to work. The Pain Clinic said I needed long term physio and would be better off cared for in my community. They were going to try botox but did not.

My current Headache Doctor is doing nerve blocks. I gave him extensive notes on what was happening to me. He recognized that I had nerve damage. I did see a Dentist at a top TO Hospital about jaw pain. The pain has always been - base of my skull, up the back of my head, then across both sides and sometimes into my forehead. I can tell that it is above my upper gums but below my nose. I felt that the Dentist was telling me it was not real. She prescribed Nortriptyline and Naproxen. I had just begun Celebrex but came off. Did continue to take a PPI. My Family Physician said take Naproxen or Celebrex but not both. I went with Naproxen. I have had some things get a bit better. I was at first getting what I call brain zap. Sitting on the couch and I start to fall asleep and then I get a zap and wake up. Had it happen in a Pysio Pool. I was doing exercises and would start to fall asleep and almost go under the water. Then a zap would occur and I woke up. I have not had this happen for awhile. I also had some episodes where I was holding a cup and then my arm would just lose its muscle and fall down. Havn't had that happen for a long time.

I went back to the Dentist last year. Told her my gums feel like they are swollen and tight. She began to look in my mouth but just the same as my regular Dentist, can't see serious gum problems. She told me this time I have Neuralgia. I was not taking Nortriptyline. The Headache Doc got me off and put me on Lyrica. Lyrica did not not stop all the pain but it did not cause horrible symptoms. I was taken off mostly do to weight gain. Off Lyrica I was having nerve spasms in my back and behind and had restless legs. I was put back on Nortriptyline and the nerve spasms have stopped. I am still in horrible pain trying to get by a day at a time. I can walk but with pain. I get relief when I go to bed and Nortriptyline puts me in a deep sleep most nights.

I have read some posts. I am not anywhere near understanding all that is happening in me.

This is my last long intro. Hope I can continue to learn from others who have posted.


Post Edited (Loring) : 7/29/2014 1:00:54 PM (GMT-6)

Veteran Member

Date Joined Mar 2014
Total Posts : 1035
   Posted 7/31/2014 3:10 PM (GMT -6)   
I post everywhere too. I have so many diagnoses too. I would totally recommend working with a tmj dentist and a very good chiropractor. Years ago when I was 22, I had such severe neck pain that I was bedridden for a long time. Turns out that it was severe muscle issues in that area that couldn't be diagnosed. My jaw was out of alignment too which pulled all the other muscles out of whack. When muscles are in severe tension they are so tight and press on nerves and cause so much pain. I severely grind my teeth. It caused my gums to hurt too.

You may want to consider stopping the pain pills and trying muscle relaxers and see if it helps. Maybe trigger point injections around your neck. And big time muscle therapy if you can get it. Anything to relax all the tension and rebalance the muscles and nerves in your neck. There are big nerve bundles i the back of your neck that could be severely irritated by tight muscles. I know it sounds crazy, but it happened to me.

Good luck.

Regular Member

Date Joined Jul 2014
Total Posts : 473
   Posted 8/1/2014 3:26 PM (GMT -6)   
Hi Louise:

I really am not sure what to do about my teeth. I needed Orthodontics but he said they don't like to treat people with pain already. He referred me to a Dentist at a top TO Hospital. They all think my teeth are not so bad and the gums are healthy enough. I had two root canals done. The first tooth a Dentist that was fixing a filling exposed a nerve. It didn't cause problems until a year or so after when it got infected. Then the one right beside got infected after and another root canal was done. I also had one wisdom tooth removed which might have thrown them off. I am 60 now. My one front tooth is out of alignment. One Dentist said just have it pulled back - they don't want me to do work that is not needed. They said pulling it out is not a good option as they are hard to get a tooth back in. It is not going to fall out any time soon. I told my Dentist to pull them all out and give me dentures. He said we would not do that to you. It apparently does not stop the jaw pain. Yes, part of the problem is jaw pain.

Neurologists thought the OA in my neck is causing the headaches.

I do get nerve blocks by the Headache Doctor and he is trying to loosen the muscles. He does treat the jaw, in my forehead, back of head, neck and shoulders. I am on Baclofen and I am not on any pain killers. I used to take some Extra Strength Tylenol every day but stopped. My Doctor is concerned with rebound headaches. Any meds could likely cause them. I have Stenosis in my neck and my Doctors said no to Chiropractors but I do see a RMT. It isn't like a relaxing massage it is more of a fixing tight muscle massage. It is terribly hard. I have the massage on my back and he does some work on my neck and then I get the nerve blocks after. I then start all over again to adjust. My Husband takes me every 4 weeks. I can't drive. The Doctor also fills out Insurance forms.

Will tell you that I have had one really relaxing massage in a spa in Athens, Greece. I have tried many different kinds but I will always remember how relaxed I was that one time.

You are likely so correct. I grind my teeth too and wear a bite plate.

Thanks so much for your suggestions.


Post Edited (Loring) : 8/1/2014 4:33:52 PM (GMT-6)

Veteran Member

Date Joined Mar 2014
Total Posts : 1035
   Posted 8/2/2014 3:50 PM (GMT -6)   
I'm sorry yo hear about your pain. There are specialized chiropractor that don't manipulations, like nucca practitioners. There are all types of specialized therapy like Bowen therapy, which people with fibromyalgia might try. Or acpuncture. There is alternative stuff out there might help and is gentle. Good luck

New Member

Date Joined Aug 2014
Total Posts : 5
   Posted 8/3/2014 12:57 PM (GMT -6)   

I just joined and was looking thru the posts when i saw yours. I truly am sorry to hear about your pain problems. I am in a similar boat as you with painful headaches caused by a car accident.

You mentioned that you had restless legs when you were on Lyrica. The dr. put me on that as well and I too had that problem but since it was the last medication without going onto a habit forming drug (barbiturates or the like) we were both at a loss as to how to get rid of my headaches. The doctor and I decided on a two week cleansing routine and then we would decide what to do next. This was 2 weeks of hell on wheels, but I got thru it. We went back to Lyrica but on a very low dosage for two weeks which did help a bit with the headaches. He then prescribed ibuprofen 600mg to be taken when my headaches were extremely bad and the Lyrica wouldn't stop then.

This drug regime has seriously helped me get thru life since March of this year.....before I was experiencing headaches similar to yours. I'm just wondering if this might help you, it's just a thought.

Hope you are headache free today, sweetie!!!

Regular Member

Date Joined Jul 2014
Total Posts : 473
   Posted 8/27/2014 12:06 PM (GMT -6)   
Hi Tafaille:

I just went back to look at what I posted in headaches. Sorry I did not see your response.

I am truly messed up more. Was in a car accident over a week ago. I posted some things on Fibro. We were out of town and ended up going home in a cab. The car is a write off. I was getting chest pain at the accident scene and I know my Husband was telling people and a Police Officer. Once home I went to my community Hospital ER. I was injured by the seat belt. The bruises are healing. Headaches are not good. I realize it may be whiplash and will follow up with my Health Care Providers.

I did not have nerve spasms prior to Lyrica or Restless Legs. I am not sure what brought them on. Lyrica might have been masking them. I would get small twinges at bedtime. I am not sure what the cause of them is. I am just thankful that Nortriptyline has stopped them. My Headache Doctor acknowledges that the med is doing something for me.

I am on Naproxen (NSAID), Baclofen (Muscle Relaxer) and Nortriptyline. I also am on HRT. I have tried some of the narcotics. None of the meds totally stops the pain. I have only had a hand full of better days in the past 12 years. I know right now that I was in better shape before this car accident. The ER Doctor said I could take Tylenol for pain. I have but I stopped using Tylenol before as it can cause rebound headaches. Taking it again still does not stop the pain in my head. The chest pain is letting up.

Have to take small improvements as they come.


Osteoarthritis in multiple joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...

Post Edited (Loring) : 8/27/2014 11:10:22 AM (GMT-6)

Forum Moderator

Date Joined Apr 2012
Total Posts : 7438
   Posted 8/28/2014 11:13 AM (GMT -6)   
Welcome to the forum.

Certainly sounds like Trigeminal Neurolgial. See my diagnosis under my signature. I had to go to John Hopkins in 2008, my pain started in 2006, for a correct diagnosis.

Yes, I had the same pain in my jaw, very typical. If you go to the TNA face pain site you will learn a lot about this condition.

the following are the meds I am on. I function well with a pain level daily of 1-3. I still do have major attacks and have PRN meds for that.
My TN goes from Front to Back of the head, so it is reversed from 99% of the people that have it.

Propanolol 125mg ER
Toporamate 100mg am 125mg pm
Cymbalata 60mg am

Imitrex 100mg PRN
Imitrex Nasil 20mg PRN
Tylenol 3 PRN for cluster and TN together

I hope this helps you.
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

New Member

Date Joined Aug 2014
Total Posts : 7
   Posted 8/28/2014 2:51 PM (GMT -6)   
Hey, I've been having the same problem with my neck muscles. There very tense. For those who have tried muscle relaxants. What are the bad side effects?? I get nervous about taking medicine because I already deal with dizziness, nausea and vertigo. And constant head pressure that makes me feel faint and like I'm about to pass out all the time.

Regular Member

Date Joined Jul 2014
Total Posts : 473
   Posted 8/28/2014 8:44 PM (GMT -6)   
I will take the names of the meds you are on to my Headache Doctor to see if anything might be useful for me.

I am taking small amounts of Baclofen, muscle relaxer. 5 mg at lunch and 10 mg at bedtime. I recently took an extra 5 mg in an afternoon. I did a household chore and my Husband came home and said we could go shopping. With Fibro it is tough. The muscle relaxer did help to get through it all. Mornings for me are tiring. I get up at 7:30ish. Sometimes very sore and swollen eyes. I take morning meds and have a bowl of cereal. I then sit in the Family Room and try to read the paper. I just can't do it - fall asleep or need to close my eyes as they are sore. I seem to come around at 10:00ish. I do take the muscle relaxer in the evening, Nortriptyline and Magnesium calm. I guess they all sit in me till 10:00.

I don't have other side effects from muscle relaxers.


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