The new doctor that I have visited, after tons of MRI"S, CAT SCANS, and many other test, all negative, believes that I have Occipital Neuralgia complex. I know what it is, researched it. Do any of you have this problem, treatment working? What do you do to end the headaches?
I have tried nerve blocks in the past. Personally, they were not successful, but they still have a very good success rate. You might want to ask your doctor if they would be an option for you.
Unfortunately, it is a permanent condition, with no 'cure'. They only thing you can do is try to minimize the occurance, and when it does happen, treat the symptoms.
Personally, my headaches can be stemmed from my neck muscles being to tired or cramping up. I take one medication at night that is a muscle relaxer (anti-spasmatic) it also has a sleep aid with it. I have a prescription for tension headache medicine that I take as soon as I start feeling my neck tense up any. I also have a prescription for a migraine medication that can help some (not much). I'm on amitryptaline (sp) it is known to help with long term pain. I have taken a wide variety of medication that are known to help (just not on me). I'm also on Phenergan because all the meds are too much for my stomach.
However, when I get a full blown episode. Nothing at all helps...at all. I just lay in bed and cry basically. My 'headache' have gotten to the point were it completely inables my vision.
In a few years, I will start taking nerve medications (neurontin, lyrica ect) As that has been proven to help as well.
Of course, there may be many more options available to you. My doctor has chosen a very conservative approach because of my age. So, there are quite a lot a variables.
I'm always on here, so feel free to post more questions or pm me whenever you want.
Yes sir, I've been treated for it since the summer of 06. But I was diagnosed with it in February of this year.
You'll learn to manage it and it does get better. Some people can grow out of it. (so they say). Unfortunately, it's just something that you have to deal with. I have a prescription for Zanaflex at night. It does wonders and helps with my high blood pressure as well. You might want to ask your doctor about it.
I also suggest looking into antidepressants and counseling. It is a hard thing to deal with, and it can put you in bad place if you aren't careful. Just know that it is very common to be completely overwhelmed with the 'big picture' especialy at first.
We are allways here. And you can always pm me if you need to talk.
I've had Occipital Neuralgia now for about two years.
I've tried the following:
chiropractic, including Manipulation Under Anesthesia
cold laser therapy
trigger point injections with nerve block and steroids
Prescriptions I've been on and off of:
Tizanidine: same as Zanaflex
Cymbalta: celexa and lyrica mixture
Valium: replaced tizanidine
and alot more...
Nothing fixes it, just masks it or turns the volume down on the pain.
This coming week we're putting the order through the insurance for Botox and I'm going to be going down to Jackson Memorial at the University of Miami, Florida.
After going to the University of Miami, Jackson Medical Center, they want to perform rhizotomy on me. Not sure if this is going to work or not...might as well try.
A rhizotomy (rÄ«-zÅt'É-mÄ) is a neurosurgery that selectively severs problematic nerve roots in the spinal cord, most often to relieve the symptoms of neuromuscular conditions such as multiple sclerosis, spastic diplegia and other forms of spastic cerebral palsy. In extreme cases, a rhizotomy may also be considered for a person suffering from severe back pain or a pinched nerve. The sensory nerve roots are first separated from the motor ones. Identification of the nerve fibres to be cut is then made by means of electrical stimulation. The one(s) producing the pain or other problems are identified in this way, then selectively cut.
I have had headaches and tension at the base of my skull and upper neck for a little over a year. When I first got them, I suspected it was residual from having sleep apnea. I got treated for sleep apnea, and I was fine for about 3 months. Now the pain is coming back. Does this sound like occipital neuralgia? I've done some research, but I am not 100% sure that's what I am experiencing.
I too, have had chiropractic manipulation, cold laser therapy, ultrasound therapy. The ultrasound works for about a day or 2, and then it comes back. I understand the ultrasound relieves inflammation. It worked miracles when I tweaked my sacroiliac joint. That pain was probably the worse I ever had, and I thank GOD for ultrasound therapy on that one.
I am thinking about buying my own ultrasound therapy, but I know I won't be able to afford the same units the chiropractor gets. Anyone try any of these units.
I don't think you can buy an ultrasound machine over the counter. While many people think ultra sound is totally safe people that use them are trained. Ultra sound can cause serious injuries of not use by a trained professional including really bad burns. There are a lot of math calculations that go into determining an ultrasound treatment like pulsed or continuous, duty cycle, MHz of ultrasound head. If you do end up buying a US machine be careful you could end up with a lot more problems than from
I also have sleep apnea. However, occipital neuralgia and sleep apnea are not related. The mask you are wearing for sleep apnea may be digging into the back of your head agitating the nerve across the greater and lesser occipital nerve.
You should also get an MRI and see if you have a herniated disk between your C3 and C4.
You may want to try:
-TENS unit (muscle stim)
-cranio sacral therapy
-seeing a pain management specialist for trigger point injections
I'm also going to try to get on Lyrica.
When the pain is out of control I fill up a tupperware full of ice water and dunk my head into it for about ten minutes.
So, I have been suffering from migraines since I was 20 (I am now 40). In the last 5 years, they have gotten worse and worse, and more frequent. They are debilitating, so painful. I have cried alone in my bed, screaming for someone to take me to the hospital. So, since all the doctors in the world could not help me, I have taken matters into my own hands. It's amazing how much information you can find on the internet.
First - migraines can be caused by many things: food allergies, hormonal issues, TMJ, neck injuries. I originally thought I had food allergies, so bought this book about that, and eliminated alcohol, chocolate, coffee/caffein, MSG, mushrooms, tomatoes and a whole host of other foods. This did not work.
Then I thought I had TMJ. So I had my dentist make me a mouth guard. I actually do have TMJ, but I now think it is not so severe and not the real cause of the migraines. However, I have elminated hard-chewing foods (popcorn, gum chewing, hard vegetables). I do think the TMJ contributes somewhat, and so I am seeing the UOP Facial Pain Clinic, and they are fitting me with a very special mouth guard. This requires numerous X-Rays, it's not covered by insurance, and will cost several thousand dollars. But with this amount of pain it's worth it.
I am now in the process of exploring the possibility that I have occipital neuralgia or trigeminal neuralgia. I had had a few neck injuries (car accident, mountain biking accident and another accident). My pain does radiate from the base of my head/neck connection, spreads over the left side of my head and onto the back of my eye. This seems to be a symptom of ON. So, I actually did my first treatment of botox with Dr. Marilyn Robertson at St. Francis Memorial. I don't think it worked, however, she told me they were doing a lower dose, and we could up the dose if it didn't work. So I am going to give it another try. If it doesn't work, I am going to try a nerve block.
Other treatments - I have done acupunture for 2 years. It didn't seem to work. I am just starting to go to a chirpractor - I am hoping that is going to help. I bought a cervical pillow (as many of my migraines seem to come on at night). Originally I did a sleep study at UCSF to see if I had sleep apnea or TMJ. Through the sleep study I found that I don't have sleep apnea, and I don't have serious TMJ. But I thought something is going on at night to give me these headaches. With the cervical pillow, and sleeping on my back, this seems to help. I am also taking 80 mg of baclofen right now, and that has really helped. I was getting migraines daily, and now I am not getting them. But I can tell if I stopped the baclofen I would immediately get another migraine. Also, the baclofen makes you sleepy/tired, and I also think it is making me a little depressed. So I am continuing to do swim-workouts to counteract the depression. Once I get a migraine, I have found that injectable immitrex works the best, although it does give you a nauseous feeling. Amerge, Maxalt, Vicodin, Demerol don't work so well.
So that's it. I hope the botox works, and if not, on to doing a nerve block.
Do you still have headache? I have exactly the same symptoms!
Have you found anything that works? I have had my headache since 1973 and have also tried everything any doctor has suggested. My headache also started with a small lump at the base of my skull although all the upper back muscles are now involved after so many years.
I'm currently researching something called "Anterior ethmoid neurovascular complex. A "patient" on Grey's Anatomy had it and symptoms were similar. After Googling it, I found a story about a real patient.
I have had ice pick headaches, hemicrania continua (ongoing migraine) used IV DHE in the hospital 6 days; the drug that worked for me was Indomethicin. Tried all of the other imitrex, lyrica, savella, and so on. Found out I had decayed molars/cracked; removed them and am now recovering. Also had 6 sinus surgeries for all the infections! Ethmoid infections cause migraines!
I see that a lot of post in this forum are from a while ago but I was searching this "anterior ethmoid neurovascular complex" from Grey's Anatomy and found that there is definitely a medical condition listed under this name: "anterior ethmoid nerve syndrome" and this webpage talks about it: http://archotol.ama-assn.org/cgi/content/s
Hope this helps other posters and headache sufferers!
I had a second cervical fusion (C-3 to C-5) operation in June 2000 to stabilize my neck after an initial operation to fuse C-1 to C-3 when I broke my neck in the Navy back in 1981. Ever since the second operation I have experienced frequent severe headaches that have caused so much pain I was suicial. The last two procedures I have had done at the VA Hospital connected to the University of Michigan were nerve blocks. The first procedure was steroid injections to the right greater and lesser occipital nerves. This was performed every 3-4 months over a two-year period of time. Initially this treatment was about 75-80% effective, but over time the improvement was minimally effective. This past October the doctor tried a procedure called Pulsed Radio Frequency Ablation. It's supposed to act as a nerve block by burning the nerve. I have had some success with this but still experience frequent significant levels of pain in both my neck and head. Additionally, ever since that procedure my sense of taste is all messed up. I suspect that in addition to one of the right occipital nerves that were burned they may have also burned the olfactory nerve that can affect the taste sense. Has anyone else experienced this?
I tried the Botox and it was a big mistake. It only referred the pain and muscle spasams further down from the base of my head and my shoulders cramped up so badly I was in a stuck position. I was in a mess until that Botox gradually weakened and eventually went away which took about 6 weeks as I recall. I'd never to it again. It was frightening.
Is a Living Nightmare!! I have terrible shooting nerve pain that radiates from the base of my skull, to my forehead, Trigeminal neuralgia, and Severe Migraine Headaches!!
I've tried Botox and steroid injections: not much help! Had facet nerve root injections by a Pain Mgt. Dr. (Little relief!) There is a procedure done to decompress the Occipital Nerve Root, by a plastic surgeon (Dr. Perry). I have a wonderful Headache specialist(neurologist), Dr. Pam Blake who helped found the procedure, Georgetown University, She's now here in Houston. People fly from all over to have this surgery done. I'm still fighting an appeal with my Insurance. Most Ins. companies still deam it under the experimental/clause. I have a wonderful neuroseurgeon, but all he will do is place an Occipital Neurotransmitter. Do not have the nerves cut. Due to too many steroids, from hospitalization for Migraines, Occipital nerve root injections, and Facet nerve root Injections from a Pain Mgt. Dr. I've developed a severe allergy to Steroids: I crashed in the ER, with BP. 60/33. My husband thought I was going to DIE!! I'm also being tested for Cushing's Disease...who would know?? results sometimes from excessive Steroids. Dec. 12,2009, had an Ant. Cervical Diskectomy C-5,C-6 and bone fusion! Tough Recovery: will start Aquatic Therapy soon. I'm trying to taper down my Meds. alot of weight gain with Cymbalta and Lyrica. Plus I've not been physically active. Cymbalta: had Horrible!! withdrawl side effects, Lyrica, not as bad. Right now just lowering the dosage, slowly...to see if I can cope with the Occipital Neuralgia. Zanaflex, helps some with the tight muscles throught the neck. Pain Meds. do not seem to help me anymore, except Maxalt/Zanax for Migraines. I want to gain my Life Back!! I pray for those in need and hope to restore my Health to live my Life to the Fullest!! God Bless, D. White, Texas
I've also had headaches for 20 years and mine are due to food and supplement allergies. I've tried many things including Prozac, amatriptoline which helped tremendously but caused so much weight gain and mental confusion I had to stop. Seems when I eat something my body doesn't like or can't handle, it feels like my head is swelling. I've tried Botox, chiropractor, accupuncture, etc. and have spent many thousands of dollars on traditional and non traditional treatments. I will tell you what I do to manage or control these headaches which I have learned through trial and error.
1. Lots of prayer for wisdom and guidance.
2. Read "Say Good-Bye to Illness (NAET) by Devi S. Nambudripad, M.D., D.C., L.Ac., Ph.D. (Acu.) and got the allergy treatment recommended in the book. I cannot say enough for this treatment. It helped TREMENDOUSLY but I was fortunate to find someone who knew what they were doing. I can eat many more foods now that I've done that, and feel like I have a life again. Before I was existing. This woman who wrote the book is simply brilliant and put all her knowledge to work to help chronically ill people. She said most illnesses, including headaches, are allergic responses to all kind of things. If you can find someone who knows what they are doing with the NAET treatment, it is a great treatment. It can take a while and it isn't cheap.
3. When I feel a headache coming on I take 50 mg caffeine (which is 1/4 No Doz pill) and with it 1/3 to 1/2 Tylenol #3 which has some codeine in it. In other words I tweak these two things together to ONLY take what I need to banish the headache and usually the headache is gone in about 30 minutes. When I awaken I usually have some headache (sometimes it is big and sometime just a small headache). I take 1/4 of the No Doz (caffeine) and it stops the headache most of the time. The 1/4 No Doz and 1/4 Tylenol #3 is what I take later in the day when I get a headache after taking my calcium/vit d pills. If I get a real headbanger like if I've eaten something that is fermented like vinegar, then I have to take 25 mg. Imitrex. It works in about an hour. You have to keep caffeine to a minimum or you will get rebound headaches. I get about 100 mg caffeine a day in the 2 x a day that I take the No Doz and that is equivalent to probably 1 cup of not too strong coffee.
4. I worked with a nutritionist for over 2 1/2 years learning how to cook and eat really healthy foods and a lot of them. I eat lots of fresh fruits and veggies (organic), no beef, and I eat chicken, turkey and fish. Also, grains which are very healthy with lots of vitamins. Many of these things I could not eat until I had the NAET treatments.
There were other things I've tried but they did not help at all. I realize we are all different and what works for some may not work for others, but I wanted to share my experience because you might just pick up something I'm doing that is working for me and it might work for you too.
I really appreciate all the input on this blog because we learn from each other.
Thank You, for all your input 2103 member...You are soo right by saying, you have to find all things that may also be contributing to the condition. I found that even my vitamin D defeciency has contributed to some of my headache pain. Yes, I still have stabbing, liquid lava, burning pain that radiates from the base of my skull to forehead and Migraine headaches...but, I have found that Lyrica does help some and I dropped as many meds. as I could to prevent rebound headaches. My diet, is also something I will have to work on...I find each day to be new and challenging. I start Aquatic Therapy next week to help recover from my C-5,C-6 Diskectomy and Fusion. I felt like I had been hit with a hammer in the back of my head and pounding headaches for weeks. I'm thankful, to be recovering....Sincerely, D.White
Occipital neuralgia comes for the cervical spine C-1/C-2 compression. Try NUCCA chiropractic. Find the closest doctor to you. I'm having success. NUCCA takes the pressure off the brain stem - painlessly without cracking, popping, etc.
After 7 years and every treatment available I finally had BoTox. It seems ON is often the muscle compressing the nerve at the base of the skull. I had 10 weeks relatively pain free and I'm confident that combined with physio/massage I will get longer next time.
BoTox seems a logical solution but is not offered as standard for some reason?
My husband has suffered from ON. for 9 years now. He has had everything done that you all have mentioned. His pain is 24-7 and is excrutiating all the time. Nothing worked by the way. Out of all the treatments not one of them worked.In fact,he had the nerve severed and all that did was made the pain worse because the scar tissue grew back thicker than before thus squeezing the nerve tighter.He is now going for a peripheral nerve stimulater which sends an electrical impulse to inturup the pain signal. This is our last resort as he is at the end of his rope. Keep your fingers crossed!