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But Maybe Tomorrow


  1. Hi Katie, thanks for making this forum and i hope you find some answers to your chronic headaches still happening. First post.

  2. Hi Katie, thanks for making this forum and i hope you find some answers to your chronic headaches still happening. First post.

  3. Wow, what a path you have been down! I hope your surgery eventually leads to relief from the pain. I am about 7 months into a period of daily neck and head pain. I say "head pain" because what I experience is often unlike any "normal" headache. I have been told it is nerve pain along my occipital nerves and sometimes it has been very severe. I've also had neck pain and spams, muscle pain, and pain that radiates towards my collar bones. And sometimes I have intense "internal" headaches that are more like a traditional headache. I have been diagnosed by 2 chiropractors and 1 neurologist as having "occipital neuralgia", but I don't know that that is the whole story.

    Anyway, I found your blog by searching for "CBD and occipital neuralgia". Ha! I have tried numerous treatments in the past 7 months (chiropractic, ART, PT, Neurontin) but none have given me sustained relief. I am moderately better than I was a few months ago (I believe due to PT and Neurontin) but still have daily pain that can spike to a 7/10 or so. So I am looking into using CBD to try to help the pain. I actually have an appointment tomorrow with a doctor to discuss it (I live in Colorado, so have lots of options in that department).

    Anyway, I'm not sure why I'm writing other than to say I very much empathize with all you've been through. Perhaps I am also looking for hope, and advice. My neurologist and PT both believe my pain has been caused by overtight neck muscles compressing my occipital nerves. I have been doing PT now for 3 months though, and my muscles are sooo much better, but I still have pain. My PT and neurologist have both implied I have some sort of central sensitization going on, but I feel strongly that the problem is coming from my neck. My MRI came back showing only mild disc degeneration, but I feel like the "epicenter" of my pain is the very top of my neck and that the pain radiates from there. I am seeing a pain doctor in a week and a half to discuss injection possibilities. I am not at all ready to give up or to accept that the significant pain I am having is from sensitization. (I believe that is a real phenomenon, but I feel like the pain generator for me has not yet been found).

    I actually read your blog kind of backwards, from a couple of the earlier posts to the most recent. I thought for certain (and I was hoping so hard) that you had found your "cure". I am so sorry that you haven't.

    Best regards,


    1. Hi Erica - thanks so much for taking the time to comment and share a little bit of your story too. I'm very curious to hear more about your experience with CBD. I've tried it here and there (as well as higher THC strains) but think that getting some guidance from a doctor like you're doing could be really helpful.

      I completely understand your frustration with the whole central sensitization thing. I remember the first time I heard the word in my neurologist's office a few years ago and I just remember thinking "NO, this is REAL, I can feel the pain coming from my neck!" But the more I understand about how chronic, centralized pain works, the more sense it makes to me. Pain can cause tightness/tension/dysfunction to your soft tissue and that tightness/tension/dysfunction can cause pain. So it's a cycle that basically feeds itself. I think that in my case, I had a biomechanical problem at C1/C2 that needed to be fixed before anything else had a chance, but I also think that my brain has been stuck in this cycle of pain for so long that there is a centralized component to it now also, which explains why even after having my surgery I'm still in pain. Right now, a lot of what I'm doing is focused on trying to get the message to my brain that it doesn't need to be in pain anymore. Chronic pain changes your brain in a very real way - literally changes it's anatomy so now it's a matter of changing it in the other direction. This info might be helpful too (this is the doctor that I'll be seeing soon in SF)... www.neuroplastix.com

      My advice to you is listen to your gut 100% - like you, I believed I had an underlying pain generator that was driving all of this - but just stay open to the idea that the longer you're dealing with this, the more likely it is that there are other variables at play that might need to be addressed in conjunction with other treatment.

      Did you have an accident that set all of this off?

      Looking forward to hearing back from you and sending my best thoughts your way!!


      thing that I will say about the whole central sensitization thing - and it took me a while to really wrap my head around this j

    2. A DMX motion xray open mouth can detect if your C1-C2 is playing a role in your issues...although it seems you aren't suffering from instability, i would suggest trying some prolotherapy injections if you can afford it.

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    4. Hi Katie,

      Sorry for the delay in writing back. I have not wanted to be on the computer lately...things have been a little rough.

      Anyway, to answer your question, no, I did not have any type of serious accident preceding my symptoms. I had a couple mild ski falls and a fall while running several months before, but nothing I can tie directly to my symptoms.

      The CBD experiment didn't go that great. The doctor I met with was not a ton of help. I tried a high CBD/low TCH tincture. I didn't like the way it made me feel...mildly agitated and depressed, and didn't help with my pain. Maybe I'll try other strains some day, but overall it was a disappointment.

      So a lot of your pain sounds really similar to mine but some is different. The past few weeks I've been having really bad headaches at the front of my head/behind my eyes that is accompanied by mild nausea and an overall yuck/sick feeling. They seem more like migraines, but I've never had a "classic" migraine. I've also been getting pain in my face, along my forehead, under my eyes and along my jaw. My PT said it's possible that I have some sort of TMJ component. Did you ever have symptoms like these? These are different from the main symptoms I had been having -- which was intense pain at the back of my head, muscle spasms, and neck pain. (I still have pain at the back of my head and neck pain, but not quite as bad as it was before).

      I don't think my neurologist really knows what to do with me. When I didn't respond fully to the PT, he prescribed me another medication (Cymbalta). I called him last week to tell him about my new symptoms, and he said he doesn't know what is causing everything. That's not very reassuring. I have an appointment with a pain interventionist today to see if he can provide any answers or thinks I'd be a good candidate for any injections, etc.

      I'm wondering if you have any advice for finding the right doctor(s). It looks like you have been all over the country to see different people. I don't feel that my current neurologist is really going to do anything more than prescribe different drugs, and I doubt that is going to change anything that much. What do I do next, if I don't get any answers from the doctor today? Were any of the doctors you saw particularly helpful -- any you would recommend? My friend keeps telling me to contact the Mayo Clinic in Phoenix...I'm wondering if you saw anyone there? Did you ever go to any of the nationally known headache clinics?

      Also, it seems like you were able to get in with specialists pretty quickly. I'm not finding that to be the case...I had to wait 3 months to see my neurologist!!! Any tips for getting in faster?

      Sorry for all the questions. I'm feeling a bit at a loss lately and like I am having to drive my own care and figure it out myself. It feels a little overwhelming.


    5. I have many of the same symptoms as you Erica. When your upper cervical is unstable, often times your body will incorporate muscles in the area to attempt to stabilize it. That could be why your TMJ's hurt and face and eyes. These muscles aren't meant for that, and it is causing more pain and dysfunction. If you are getting dizziness and feelings of balance loss, more than likely you are unstable at C1C2, at the very least. A DMX motion x-ray can help identify the instability at that level. I believe, an open-mouth standard X-ray with your head tilted toward your shoulder can also identify it. They would be cheaper than the DMX, but the DMX can show how your entire neck is working, it's more comprehensive. Injections is a good place to start. I would be wary of cortisteroid injections that pain specialists do, they can do more harm than good. Nerve blocks may help in identifying which level or levels is affected. If you've never had comprehensive prolotherapy before, you will know after the first treatment if your condition is from ligament laxicity, because you will get initial relief.

  4. Erica - I'm so sorry that you've been having a rough last few weeks. (You and me both.) That's a bummer that you didn't have a better experience with the CBD. I can understand completely the overall yuck feeling you felt- I've had similar experiences with pretty much every strain I've tried (low THC and not)-- either it didn't have any real effect or it made me feel sleepy/foggy but still didn't really touch my pain. Just curious if the doctor recommended or if you tried something called Rick Simpson Oil? (You can learn more about it by googling) .. I just tried it for the first time last night and it had no negative effect on me at all and I woke up today feeling better than I have in a few weeks (which could also be due to a PT treatment last night but might be worth looking into - I'm going to keep taking it for right now though).

    As far as finding doctors, feel your frustration there too. Unfortunately, I think that the downside of seeing the best doctors such a specific problem like this does seem like the wait times. When you're healthy, waiting 3 months for an appt is nothing but when every day is a struggle, it's easier said than done. I think my only real advice there is to make sure that you're on some kind of cancellation list if you can be available on short notice. Mayo Clinic is definitely a top notch place - that's where my neurologist, Dr. Dodick, is out of. I'm lucky to actually live about 10 min away from it. There's also another leading neurology center in PHX called Barrow Neurological Institute. What part of the country are you in right now?

    And in addition to seeing your neuro, have you seen any pain doctors?

  5. Katie -- sorry to hear you are having a rough time right now too. I hope things improve with the weekend. :) I have not heard of Rick Simpson Oil. I'll have to look it up. The most useful information about CBD I got that maybe I can pass on is that it needs to build up in your body over a period of time. So its full effectiveness won't be felt until you've been using it consistently for a couple weeks (although you are supposed to feel some benefit the first time you use it). This information came from folks at the actual MMJ dispensary I went to, not the doctor I saw (who told me to just have a bite of a pot brownie every night before I went to bed - ha!). And there was another patient at the dispensary while I was there. A middle aged woman who had bad arthritis. Her doctor told her to take many very small doses throughout the day to get it to build up in her body. (She said it has worked great). Oh, and to answer your question, I live in Denver -- right close to what they call the "Green Mile" -- a strip of Broadway with dozens of dispensaries. :)

    I think I am starting to piece together what is going on with me. I saw a pain specialist a few days ago, and he thinks my pain is definitely being triggered by my neck (the facet joints in particular). We are going to try facet injections at C2/C3 and C3/C4 in about a week. My hypothesis is that these joints got irritated, which resulted in the nerves in my head getting irritated. Then, over the past few months, since the signals on the irritated nerves kept firing, all the nerves in my head have gotten hyper-sensitized...hence my facial pain and migraine-like headaches. In addition, the muscle spasms in my neck have contributed to muscle tightness around my TMJ (as my jaw has been sensitive too). I'm not expecting a miracle, but I'm hoping that the facet injections may calm down the nerves enough to "turn off" all the other crazy stuff that seems to be going on...and that over time things will get better. Sounds reasonable, right? :)

  6. I was wondering if anyone has experienced "Anesthesia Dolorosa" or painful numberness after decompression or excission surgery for Occipital Neuralgia? My pain management doctor is treating a patient who went through the surgery and now her pain is worse from this side effect of the surgery. No one knows the cause but one theory is that the brain remembers old pain signals and continues to "replay" them. The pain is in the area that is numb to the touch, but is a constant aching, burning pain that can be severe. Thanks so much!

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