Am I going Crazy???

[sschanke10]

Hello, my name is scott and this is my first time on the cluster busters website. Looking for anybody to tell me that they are in the same boat and I'm not losing my mind! Roughly 8 months ago i began to get what seemed like the most intense pain behind my right eye that I had ever had. It came in waves multiple times a day and I felt as if I never left my house for about a month. After seeing multiple doctors, ENT's etc.. I finally saw a neurologist who said what I seemed to be having was cluster headaches. Ran through a ton of blood tests an MRIs and He put me on Verapamil 120 mg and maybe a month later the symptoms pretty much resolved. I was pain free for about 5 months when i noticed I was getting the sporadic headaches all in my right eye again. The only issue this time was that bearing down, laughing, coughing or any sudden movements intensified things. I had read some info just recently about something called valslava induced cluster headaches. Does anybody know what this is or has anybody hear of this? I went and saw another neurologist for a second opinion who also said sounds like cluster headaches and sometimes the bearing down issue just happens. Its been another 6 weeks and the headaches are still there, I'm having a child in less than a month and just want this to resolve... I'm at the point of trying anything.. Just wanted to know if anybody has ha this issue, sometimes it seems as f the doctors dont even know. Sorry for the lengthy post and thanks for any answers

[CHfather]

It's hard for me to find much literature on valsalva-induced CH (a new one to me), though it apparently exists (migraine, too).  Here's something you might try, as reported in one article:  >>Surprisingly, reducing rise in intra-thoracic pressure by keeping the mouth open, and, limiting choroidal congestion by forcibly screwing the eyelids together during constipation-related Valsalva maneuver prevented further development of migraine attacks.<<   Also, Rozen's 2002 article about this kind of attack says that it might be preventable with indomethacin, which is a medication that doesn't typically help with CH, so you might try to get a prescription for that and see what happens.   You can find the first article by typing "Constipation-related Migraine Is Linked To The Effect Of The Valsalva Maneuver On The Eye: A Case Report And A Mechanistic Review" in google; the other (just the abstract), which I suspect you've seen, is at https://www.ncbi.nlm.nih.gov/pubmed/12010390

 

More generally, it's hard to know of course whether that low dose of verapamil helped your CH, or whether the cycle just resolved on its own.  You will want to get the correct arsenal of CH treatments in place as soon as you can.  That would begin with oxygen.  https://clusterbusters.org/oxygen-information/   It's hard to know what's appropriate for you in your current situation, but please check back.  It's very hard to imagine that oxygen therapy would be harmful. 

[Dane]

There are several types of debilitating "head aches". Tension type, migraine, trigeminal autonomic cephalalgias, and " others" are primary headaches. Secondary headaches are numerous. Some are cranial or cervical vascular disorders, non-vascular intracranial disorder (my self-diagnosis), trauma related, due to infection, withdrawal of use of substance, psychiatric disorders, and more.  Then there's painful cranial neuropathies. These are facial related pains, or "other" (Burning mouth syndrome, MS related pain, and more).

  At one point I thought Cluster (a trigeminal autonomic cephalagia primary headache) was the end of the pain road.  There are many painful headaches involving, but not limited to, disorders of the eye, mandible, sinus, occipital nerve, etc. 

  The Headache Classification Committee of the International Headache Society has an unbelievably informative, wholly encompassing classification guide. I have the 2013 beta version on my cell as a PDF. It is free to use and sending comments to the authors is encouraged. I assume they would prefer you to discuss with your MD, neuro, etc., and have them respond. Many of the items classified only have names and symptoms. Lacking are cures and certain diagnostic procedures pathologists need in order to find cures for these dirty bastards called "headaches". Search duckduckgo.com for " The International Classification of Headache Disorders, 3rd ed. (beta version).  A .pdf file will be downloaded. It was in this guide, after hours of study and frustration at the endless top-level medical jargon, that I found clarity and discovered (after much more research elsewhere) that the culprit to my intracranial CSF-related ungodly pain was from my two bouts with pneumonia early in life. Specifically as an infant, where I nearly waivered, and the treatments used commonly around the time I fell ill.

  The pain is still a constant, days-long, debilitating threat (attack free for nearly a year, longest span in 26 year headache career), but relief comes in many forms. I feel now as if I can see my enemy, instead of just getting sucker-punched by it every so often. Good luck.