Head pain from neck/shoulders

In a similar situation, only mine has been ongoing for over 5 years. I too have had nerve blocks and PT. I also have had a series of over 100 Botox injections. No relief. Hopefully it'll work for you. Yes, I can relate to your pain and I'm really sorry for what you are going through.

I've had 2 neuro docs suggest pursuing CSF leak detection. Even though it does not show up on CT or MRI, they said it still could be there. The road block is getting insurnce to cover the procedure when it's not reallly indicated by scans or other tests. In the mean time, I pursuing homeopathic remedies.

These include (of all things) regular caffine consumption, 3 weeks of bed rest and ultimately really really fighting the pain doing something you find to be a good fight. I've done the first 2 things, today marks day 1 of passionate fighting. I pushed through levels of pain never felt before. The claim is that this type of fighting can be theraputic and ultimately lead to healing and a cure.

Although I'm kind of exhilarated by surving the day in high gear, I remain hopeful that I will get the necessary approvals to go ahead with CSF leak detection procedures if I can't beat this thing out of me.

I'm not qualified to point you in any certain direction, but feel it's okay to tell you how I'm handling it and to wish you well on your journey. I can only say that focusing reallly hard on beating it, rather than using care to minimize it, has helped.

Please keep sharing. I find this helps too.

Thanks for your reply. It is encouraging, inspite of the circumstances, to hear back form someone who doesn't thnink me a kook.

When my first neuro doc sent me away with the 'maybe CSF' diagnosis I gave it equal credence and just started over with a new doc. Two more docs later I happened into this most recent 'last one' who also uttered CSF leak, 'maybe.'

This time I went home and started googling up all the knowledge I could on the subject. And what I found was utterly amazing. I read all the medical research, found tons of ads for clinics that specialize in it and read endless accounts of people who were either going through the process of having the condition investigated or treated. I encourage you to do the same, at least to get a layman's hint as to whether or not you are symptomatic

My pain is located in the top of my head and extends through my temples into my ears. My neck also is involved, so much so I went through three months of PT and chiropratic treatment, but to no avail. I do get frequent deep shoulder and neck massages that hurt, but in a strange way feel good at the same time. Not long afteerwards though, my neck is distressed again. The most important thing I can stress about my head pain is that it feels like an intense build up of pressure pushing up on the inside of my skull.

I have taken every medication that even be remotely justified for head pain. Even the strongest drug can't touch it. But...on a huntch, my doc started me on Lyrica as well. Hmmm..like you it has helped with a little relief but not that much. I suspect that what might be going on is the side effect of feeling up. Living with chronic head pain can make you feel a bit drained toward the end of the day and I think the Lyrica is kind of propping me up some.

Soldier on! I plan to. At least one of us, if not some select few out there will ultimately come across some thread of something that will lead sufferers out of this misery. Personally, I look forward to a day when I can simply go on holiday again instead of spending all my resources on docs, medications and treatments.

I will be most interested to hear of what you discover if you decide to do some research and discuss it with your doc!

I have been reading this thread and it is ringing a lot of bells with me. It has now been almost a year since i had my last serious headache.  I went through most all of the same steps with the doctors, MRIs, pregabalins, etc. to no avail(i was even told by one doctor that the crippling pains i was experiencing were ideopathic!).

i strongly suggest that you look into histamine intolerance and mast cell activation problems.  in my case it turns out that my body has started to produce excess amounts of histamine when i eat foods that are high in histamine.  cutting out these foods helped a lot, but real relief only came much later when i did histamine desensitisation therapy with an immunologist(and even then it took a long time to get it right).  it is a series of subcutaneous injections of diluted pharmaceutical histamine used to stimulate your mast cells' production of the enzymes needed to stop the production of endogenous histamine.

i can't say that i am 100% cured, i still experience daily little niggles of pain running up the left side of my body and i produce way too much mucus all day long, but i am back over 70kg(i was down to 54kg, i am 6'1")and am, like i said, headache free for almost a year.

i hope this is helpful...