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Chronic Undiagnosed neck/head pain
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Chronic Undiagnosed neck/head pain

Here goes... I am 24 years old and have been suffering from chronic neck pain for about thirteen years. It started out with minor headaches and general stiffness. As I grew older, and especially in the last five years, it has gotten progressively worse at a quicker pace. I have good posture and am in good shape.

On a scale of one to ten, at best the pain is ever maybe a two - not that bad, but still definitely there. At the worst it is a nine, which finds me curled up in bed, sobbing and unable to move, talk or think because the pain is so bad. The pain feels like it starts at the very base of my skull, on either side of my spine (sometimes one side is worse, but it is not the same side - it switched from side to side, and usually is on both sides). My trapezius muscles and all neck muscles are so tight (likely more a symptom of a decade of chronic pain than a cause) that they are almost had as rock at times. I've been able to determine that the pain generally follows the three occipital nerves and either causes or exacerbates TMJ symptoms in my jaw. The pain includes areas painful to the touch at the base of my skull, shooting and pounding pains along the occipital nerves, stabbing pain behind my eyes and at my temples (sometimes on one side or another, sometimes both), severe nausea that does actually cause me to vomit if it gets bad enough, throbbing and constant headaches. I also get numbness in my arms and hands as well as my lips and cheeks. It is not there constantly and tends to get worse as the neck pain gets worse.

I have been journaling the pain for the past months - daily weather, symptoms, what I have been doing at work and leisure as well as what I have been eating - and neither I nor any of my doctors have been able to find any patterns thus far. I do know that holding my head in certain positions (for example looking up and down between my desk and computer screen or singing in the car with my head tilted back a bit) will exacerbate and bring on pain. I generally cannot drive or be a passenger in a car for more than a half hour without being in pain. I have to leave work on a regular basis due to being in so much pain that I cannot complete or concentrate on my work.

For treatment I have seen a chiropractors, had physical therapy, craniosacral therapy, massage therapy, ultrasound and seen various specialists. I have had XRays (everything looked fine), a cervical spine MRI (showed nothing but very mild degenerative disk), done many exercises, tried working out, tried taking it easy. I have been prescribed an anti-inflamatory (Naproxen) and the antidepressant amitriptyline off-label for chronic pain. Neither of those had any success. I am currently on Tramadol for pain, which does not decrease the pain at all but the doctors are hesitant to prescribe anything stronger for chronic pain which I can completely understand. I have also been on the muscle relazant tizanidine, which helps in that when the pain is bad at night it at least knocks me out enough to let me get some sleep.

Prior to my MRI, my pain specialist was pretty sure I had occipital neuralgia, but when the MRI came back showing nothing he wasn't so sure. I am wondering if I should have an MRI of the top of my cervical spine through my skull. I also think my next step is to have a nerve block to see if I can pinpoint from where the pain originates. Beyond that, I am at a loss. Everyone says I am too young to be in this much pain and have no one be able to figure out what it is. I think the worst part is not having an answer as to the question of what is causing all of my pain. Does anyone out there have any ideas at all?

Thanks for reading this far. I appreciate any help, thoughts, ideas or guidance anyone can provide.

Sincerely,
Keri
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My name is Rhonda and I am having the exact same problems.
I have also been on all those medicines, been through physical therapy and had 2 MRI's done. I'm going to a neorologist on 7/7/08 and I'm going to push for a nerve block because that's the only thing that makes sense. I have all the muscle pain you talked about and I know what you mean when you say you're curled up and crying in the bed, that has been my life for the past 4 months now. Has anything changed for you since April?
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Avatar_f_tn
Hi Rhonda,

You left me a message back in July saying that you were having the same pain problems as me. I tried a C3 nerve block, which didn't work. Then I tried an occipital nerve block, using cortisone (a steroid) and lidocaine (to numb the nerve). Magically, it worked. This not only diagnosed where the pain is coming from, but it helped numb it. Unfortunately it only worked for about 4 days, and only 5 days even when the doctor tried it again with a double dose. This means that for some reason the steroid wasn't working.

I am now on several different medications to try and prevent the pain, but I am still trying different procedures to stop it for a greater length of time. Up next I will be doing a nerve block using the drug sarapin, which is derived from a plant. This is supposed to break down the nerve temporarily to prevent the pain. I honestly don't have much hope that this will last much longer than the other injections, but I'm willing to try it.

If the sarapin injections are not worthwhile to continue I'll try and radiofrequency pulse ablation. My doctor says, in theory, that should last for about 6 months, but he's had unreliable results with it so I'm a little nervous about trying it.

My last resort, beyond just being on drugs for the rest of my life, is a rhizotomy, where they basically cut the nerve. This would leave the top and back of my head, and the back of my neck numb. Again, the doctor has had mixed results - some people have the pain come back after 6 months for whatever reason, some have worse pain, some have it gone forever. This is a obviously a surgical procedure so I'm really nervous about them messing around with the nerves in my neck as well.

Has anyone had any success or failures with sarapin injections, RF ablation or rhizotomies?

Best regards,
Keri
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Avatar_n_tn
Hi Kerri,
             you know you are the first person I have read about that has exactly the same problem as me.  I mean exactly.  I have tried every thing.  I have been having this problem since in was around 2 yrs old.  It was believed that I had migraines for all of my childhood, I am so sick of taking things that don't work.  

Now my pain is pretty much mild every day and it gets really dad once a week which can last up to 5,or 6 days.   I am getting to the point I cannot cope.  I have three kids and to try and look after when this is happening is unbearable but my husband has two jobs so he is very busy and I have to.

Did you go to your GP to find out about the nerve block?  I have been seeing my doctor for years with no further investigation, he just keeps prescribing meds that don't even work but they don't wont to put me on anything stronger.

Do you ever get a lot of clicking or squelching sound in your neck?

please let me know it nice to know someone is feeling my pain.

Thanks Chantal  
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647391_tn?1275020233
I feel like I am reading about me, only I am fortunate that when the pain, headache, numbness got more frequent, I got the Orthopedic Surgeon to agree with me that it was time for the  neck fusion.
The Rhizotomy does work.  It isn't a permanent cut of the nerve, only a burn of the nerve.  The feeling does come back in the nerve.  Mine lasted about 2 months.  It is a good way for relief.
My relief was on the shorter side of the length of relief.  I would have been willing to do it again if the relief had gone on the longer side - I think they said 6 months.  
You are limited how many times you get steriod shots in a 6 month period.  I went for the steriod shots for a 3rd time 2 months after the rhizotomy and could only have 2 shots.  It was enough to relieve the main source of my headache.  I could control the rest with pain meds.  Knowing that I could not have any more steriod shots for 6 months and not wanting to have the severe headaches comeback I went back to the Orthopedic doctor.  Because of the proof from the shots and rhizotomy of where the repairs needed to be made, he agreed to do the surgery.  Because I have been buggy about a allergic reaction to the bandage covering after surgery, I think he may wishing he didn't.  The surgeon did a great job with the repair and that was the most important thing.

The clicking or squelching sound in your neck is bone rubbing together and I heard it pretty often.

Please go for the surgery.  You will be glad you did.

ann
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I got the nerve blocks done by a Pain Management Specialist who was a Anthesiologist.  When I wanted to get a repeat treatment of the shots and then the Rhizotomy, I just had to go back to the Pain Clinc.  The original referal was from the Orthopedic Doctor.  You should have a Pain Clinic you can go to.  
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Avatar_f_tn
The nerve blocks I had were lidocaine and cortisone. The lidocaine worked for about 4 or 5 days, but the steroid didn't work at all. As you mentioned, he couldn't do the shots once a week or even once a month because of the steroid, so that's obviously not a good solution.
Has anyone had a radio-frequency pulse ablation? That is the next thing he wants to try after one more injection.
I think there are different types of rhizotomies, if I'm not mistaken. Aren't there ones where the nerve is cut completely, and it should last more or less indefinitely? That's how my doctor made it should. Does anyone have any experience with complete rhizotomies?

~Keri
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Avatar_m_tn
Sorry to hear about all of your troubles. I was attacked and kicked in the head almost 5 years ago and since then I have been suffering from pain coming from the lower part of the back of my cranium (just about where the neck meets the cranium). I creates great tension in the back of my head and when it is really bad, I get nausea and a weird desoriented feeling - it is like I can't really focus on things for a longer period of time, e.g. get a bit dizzy when I read.

I have had all kinds of physiotherapy, cranio sacral therapy, acupuncture, etc. Some of it has helped a bit but not enough to get rid of it. Also, I have had cortisone injections in the neck and that actually removed all the symptoms for 12-13 days! Amazing but after that the symptoms came back. Subsequently, I have had 9 or 10 more injections but that has not really had any effect. After reading your stories, I have booked an appointment with an anestesiologist in order to try all the meds that you have like sarapine, lidocaine. Has anyone got any further experiences with these drugs? Also, I have just heard that some doctors have begun to inject botox in order to relax the muscles. Perhaps that could help? Finally, I have read that some doctors perform blocks of the so-called ganglion stellatum (you can look it up on google) which has helped a lot of people with pain related to the central nervous system.

Hmm, I am hoping that some of you may have further experiences to share. And hopefully good ones!

Good luck to all,
Andy
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Avatar_n_tn
This sounds like a cerviogenic headache
It is a type of chronic daily headache
there are more sophisticated nerve block techniques for it

I will send you a website link via a note
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Avatar_m_tn
Hi, I am sorry about your problems.  I too have some similar problems from a car accident in 2007.  I may be off here, but do you recall 13 years ago getting into an accident, falling, hitting your head or anything.  I am not trying to downplay your neck, but I am wondering if it is diffused pain from a mild traumatic brain injury.  Does extra stimulation...stress, a lot of decision making, light, noise, etc... make your headaches worse?  I too have pain in my head and neck ALL the time.  It is often manageable, but if my symptoms or sensitivities excalate, they get worse.  Unfortunately, the only thing that has worked for me is not working, changing my life style (I try to stay away from bright lights (indoors and outdoors) at least without appropriate lens and loud, crowded places), and rest.  I have tried the nerve blocks, etc....
If you think this may apply to you, I would recommend reading up on post concussion syndrome and traumatic brain injuries.
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Avatar_n_tn
Hi Keri,

I am having experiencing the same problems as you. So far, I have no conclusive results, have been journaling etc. I find that a couple of foods seem to increase the likelihood that I will have a severe headache - cereal and rotisserie chicken (I don't know what the commonality is yet, but there is something there).

I find that the best way to treat the symptoms is with ibuprofen and ice. I was seeing a chiropractor/biophysicst. She had me getting adjustments, and doing tractioning. I find that this helps, taking the incidence of my headaches from 7 days a week to 5, with less severe headaches. It's something.  I too want an answer as to the cause, but I just graduated, and have no insurance. Keep me posted if you learn anything. I hope that you may find relief.

Dani
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I too suffer from chronic debilitating backpain, mine is in the thoracic region but i get a large amount of referred pain & have been diagnosed with neuritis, myofascial pain, secondary fibromyalgia & now chronic fatigue. I have had many analgesic medications as well as nerve blocks, trigger point injections, epidural steroidal injections & am now looking into having a rhizotomy. I have also heard of this permanent rhizotomy & would like to find out more about it. My understanding is that a nerve can be burnt (cauterized) or actually cut in the proccedure of a rhizotomy. My understanding is also that it is the method of cutting a nerve that can cause a permanent rhizotomy, i am booked in to see a neurosugeon on 4th August to try to find out more about this & if this is the case i want it done. My pain is sickening & it prevents me from working & i will do anything i can to try & at least get it to a level where it is not disabling me to the degree that it is. IS THERE ANYONE ELSE AT ALL THAT HAS HEARD ANYTHING OF THIS PERMANENT RHIZOTOMY?? Your input would be greatly appreciated,
Thankyou, Rebecca
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i had a rhizotomy 4 years ago dont know what type because i didnt even know about it til a read the report  just recently, but it worked great. Went back for trigger injection in back and rt neck muscle and he did steroids and sarapin, He went ahead and did a neck block under anesthesia which i wish he hadnt i cant move my neck after 4 months and i had an allergic reaction to sarapin. it swelled up my shoulders in a hump and i have bilteral abscesses between the shoulders and neck that will probably have to be removed surgically. im in so much pain because my shoulders and neck are so stiff.cant even sleep anymore. i went for the trigger points because of an allergic reaction to oxycarbazine and antibiotics. i have been so miserable. try the rhizotomy, i think he used the burn technique i was pain free for 4 years after years of suffering, but shouldnt have gone back, worse than ever. good luck. i also suffer from fibromyalgia and chronic fatigue. after 20 years different doctor found out im missing left lobe of thyroid and my thyroid levels are all messed up. my physician of 12 years knew and never told me. 70 percent of fibro and CFS ARE THYROID RELATED. ALWAYS ASK FOR T3 AND T4, DONT SETTLE ON THE STANDARD TSH. and take vitamin d and calcium. Didnt know for years my levels were terrible. now going to a natural doctor and trying to get off morphine and oxycontin my old doctor pumped into me instead of helping me . good luck all rachelle4.anyone out there that know alot about thyroid disorder or fibromalgia and chronic fatigue and degenerative disk disease let me know. tired of suffering and missing my kids lives.
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Thank goodness I found your symptoms. June 1 I went for some trigger shots in my sternomastoid muscle and back. He suggested a nerve block in my neck. I was scared cause my neck was fine after 3 years ago having a rhiozotomy . This time he used steroids in my muscle and back. 5 days later my sternomastoid muscle swelled up and jaw. I had an undiagnosed fractured, abscessed tooth from a failed root canal and was misdiagnosed for 6 months with trigeminal nueralgia and put in oxycarbazine which i told doctors I was allergic too but wouldnt listen. Tha night after taking the drug every muslce in my back seemed on fire. Called the neuroligist too switch meds but said it wasnt the med,I was in so much pain I had to go in for trigger injections. Went back for more when the Augmentin they gave me started the back pain again with a rash opn both sides of back and they gave me sarapin injections in my trapezius muscle and occipital and othe mucles. The next morning I noticed bilateral swelling on my shoulders. Called my doctors PA and went in. She blew me off and said it was fatty tumors. I told her no its been increasing all day. She sent me home with nothing. Within 4 hours my shoulders were in humps with fatty tisue swelling. I can no longer move my neck and the pain just keeps getting worser. Begged specialist after specialist to do biopsy or tell me whats going on. My neck has been swelling up and down every time I go off antibiotica and am having all my teeth pulled tommorrow. Just got my report on the surgery and it said about the injections in the trapezius muscle which I dont even know why the pain was not there. I cant sleep anymore cause its hurting my neck, back muscles , spine everything. Even my spine is swollen and was just told by ENT to oget to A neurosurgeon quickly> all the doctors protect each other. After staying with the same doctor for 13 years found out my normal CT showed I was missing half my thyroid and have had a low TSH for years but always told normal. Now it so screwed up I have a low T4 too. are your lymph nodes all swollen in neck? Could be something else but i am in so much pain I cry all night an my husband is fed up with taking me to doctors. Finally went to a chiropractor today and he promise I would feel better soon although don.t know if I can afford it. Heard cortisone injections might help. If you can figure out how to get these miserable humps off me please let me know. ENT doctor said probably surgery. My PA has been telling everyone I get referred to not to help to cover herself, but finally found a new doctor. Sad I have been misJohnson syndrome or toxic epidermis? allergic reaction to interaction of meds. Are you swelling into chest and underarms and spreading into nerve of neck? Scares me thought I have cancer because doctors would not tell me anything. Never taking those 2 meds again did not even know assumed he was using steroids. Sad I never had a T4 or T3 done all these years and all my neck scans have disappeared from hospitals. Scary Cause now I have 3 nodules on my remaining thyroid and are growing fast.Good luck to you all. If you find out a good therapy let me know, dont want surgery.Also are you having trouble with eyes and dry mouth?
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Avatar_f_tn
Has anyone had any recent success with a surgery or treatment?  Many of you might find relief with Neurontin and Lyrica.  They worked wonders for me, unfortunately, the severe weight gain was unmanageable.  I need to find a treatment without the use of narcotics.  My pain level increases when I use Vicodin and my body invents new pain as well.  I'm in a whole lot of pain and need some answers.  Please help if you can.  Any information would be appreciated                              
                                                                                                  
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Avatar_m_tn
Wow I have been having the exact same symptoms for five years  now. The only abnormality found on an mri was a venous angioma. The doctors think this is irrelevant but that is where the pain radiates from. 24/7 pain is so horrible and im tired of it. Im only 24 so they wont prescribe pain meds. That is an atrocity!! Why do we have to suffer like this. I now take high doses of depression meds cuz im so depressed and i dont know what to do. It got so bad i tried to kill myself. What do i do? I have no insurance and even if i did they wouldnt help me!! Frustrated, depressed, and miserable. Hell cant be worse than tis
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Avatar_m_tn
I have had these headaches for 9 years. nothing really got rid of them. I read where this man got relief from DMSO. I had used it but it didn't last long. He said he reapplied it often like every hour or so. I tried that and after the second day, the pain went down considerably.  My doctor had me try baclofen. It helps also but makes me drowsy. I try using both for different times and this is the first real relief in 9 years.
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Avatar_m_tn
Have you found a solution to your head and neck pain?
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Avatar_f_tn
I have the same problems as everyone here. I had the radio frequency  procedure done. This involves burning of the nerve to prevent pain impulses from travelling to the brain, thus no message of pain delivered. It did not work for me, in fact it made my situation worse. For 2 months following my "neurotomy" (thats what they called it), the back of my neck felt like I had a bad sunburn, and that wasnt all. It felt like the sunburn feeling radiated inward as well.    
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