Rich.H Posted March 11, 2018 Share Posted March 11, 2018 Hello, first time poster here. I've had CH for about 15 years and I've always been able to live and feel normal between headaches. However, this period (in between episodes) I've started to notice that my lip, jaw and cheeks are sensitive to the touch and it feels tender on the top left of my skull (where the soft spot of a baby is) when I press on those areas. I've also noticed it is sensitive if I move too fast. It started about half way through this cycle and it has been a consistent feeling that has lasted several days, which is the other strange part. Has anyone else experienced this, or heard anything about nerve damage happening? I've read the potential of MS or tumors, but I'd rather not let my mind go there haha. Quote Link to comment Share on other sites More sharing options...
jon019 Posted March 12, 2018 Share Posted March 12, 2018 I believe it's inflammation of the trigeminal nerve (the source, at least partly, of our pain) with branches exactly as you report (it's huge). When hit hard even my hair hurt.....which is hard because I'm bald. Actually, it was one of the few things I could say to "civilians" that they actually got: "gee, it must be bad if even your hair hurts!" Try some ice or a bag of frozen peas or a cold shower.... Have you had an MRI or CT scan to rule out "other" issues? I don't know the details but you can be tested for MS.....I had some other neurological issues (unrelated to CH) that mimicked MS .... and went through a series of tests. Do you have a Neuro? Best Jon 1 Quote Link to comment Share on other sites More sharing options...
sontye Posted March 23, 2018 Share Posted March 23, 2018 Hello Rich, I am also a newbie here. I have had CH for a little over 4 years. My episodes are 4 times a year from 4-6 weeks. My attacks last from 1 hour to 6 depending on the evening. I am nocturnal. I also have lingering pain. My gland under my tongue will stay swollen sometimes almost the whole next day subside and then I get my next attack. The pain in my teeth as well as my head and my nose stays as well especially if I go over an hour. I had the CT's MRI's etc. I was glad to rule out brain issues MS etc. at least it left me with an answer that it was not other issues. It gave me some peace of mind and reference for moving forward. My neuro also tested me for seizure activity (which I was clear of). Wishing you less pain, Sontye Quote Link to comment Share on other sites More sharing options...
xxx Posted March 27, 2018 Share Posted March 27, 2018 Hey Rich, What you're experiencing is called cutaneous allodynia... pain resulting from the slightest touch to the face or scalp that shouldn't cause pain. It's a common part of the cluster headache syndrome... See your PCP for a lab test of your serum 25(OH)D. The odds are high you're vitamin D3 deficient. Start the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and the odds are equally high it will prevent your CH and the cutaneous allodynia... The link to down load a copy of this treatment protocol follows: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 This is not a joke and I don't sell anything. I've been providing information outreach to migraineurs and CHers on the benefits of this regimen and vitamin D3 since December of 2010. If you've any doubts about starting this regimen, click on the following VitaminDwiki link. It will take you to a page at that site that's all about my work with CHers taking this regimen with vitamin D3 and the cofactors. http://is.gd/clustervitd Take care and please keep us posted. V/R, Batch Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.