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@Bushcraft39 welcome to the forum. I would start the D3 regimen immediately. If you search D3 in the search bar you will find all the info you need. This will most likely help lessen the frequency and intensity of the attacks once the vitamins finally kick in. Have you been to a neurologist? Are you able to get oxygen? It’s a life savor. I bust with MM myself and find it to be incredibly helpful. Keep us posted. kat

....careful with the OTC...will tear up your stomach w/o touching the CH (well, maybe helpful for shadows) ....a journal is a most excellent tool for determining triggers, and most helpful for a headaches specialist in confirming diagnosis. know of one who considers journalling itself as an indicator of CH. note that many neuros are as clueless re CH as most PCP...ya need a specialist. at the bare minimum ask the neuros office if the doc is familiar with treatment of CH... ...an energy drink with at least 120 mg caffeine and 1000 mg taurine is especially helpful for many clusterheads....improved the effectiveness of oxygen greatly for me, sometimes all that was needed if used immediately upon feeling hit coming... ...agree with kat re D3....low risk option with high upside... ....and yeah...welcome! sorry you are in the club nobody wants to be in....

Thank you for the responses so far! I haven't tried oxygen yet, but have read about it before. In the first five years, the headaches were very predictable and did not last very long, so I was able to suck it up and use OTC pain medication to lessen the pain. Now with them sometimes lasting longer sometimes and being more intense, I have begun keeping a journal of start time, end time, and pain intensity. I plan on keeping a written record for about another month before going to a neurologist.

...OXYGEN!!!!

@trjonas hi yes it works. It lessens the headaches. I am also taking anti-histamine, have changed my diet, and have oxygen. So it’s manageable now.

@trjonas Thank you for your response. I'm glad you had a pathway that had clearer indications and a positive result. For me, MRI's and other scans have all been clear or "clear enough" might be more accurate because I do have various findings on my neck such as foraminal narrowing and some bulging. That said, I've always wondered about compression, and given what you passed along from your doc about no imaging being able to show the damage, I still wonder about it. I have also read studies that seemed relevant, as does your case. I've mentioned compression to many docs over the years but none really seemed to indicate it was on their radar as something they were familiar with, or not relevant for me given the other symptoms and imaging. Too much seems to be unknown about the pathophysiology and the nature of the beast... I did just have a occipital block recently, which is on the CH "treatment pathway" with my current neurology doc. It did have a bit of benefit for a couple days. I've tried the long list of meds and blocks over there years, and a long list of specialists, without much benefit. I do think the CCH is part of the picture. Is there also, nerve compression, or cervicalgia? Maybe... Hemicrania Continua has also come up in my treatment because I have very high baseline headaches in addition to attacks (and other CCH symptoms like the knot in my neck, rhino/sinus and eye swelling, etc). One odd thing that does seem uncommon is that I have a lot of nausea, as if the vagus nerve is somehow getting crosstalk or something (who knows really - that's just my imagination trying to peer inside my head :)) Maybe I'll start a new thread asking the community about nausea... All that said, I am grateful to have some new options thanks to this community. I wish I had found this sooner! For now, it seems busting and D3 are the way to go. RC seeds on the way as a quick way to start. I'll be watching for your updates as well - fingers crossed for good results for all. Thanks, L

@trjonas Just curious -- Are you taking Neurontin (gabapentin) or a similar medication as part of your post-operative therapy? I ask because Neurontin is often prescribed in nerve-regeneration situations (and it's also sometimes prescribed for CH).

Hey Tiffany! no contradiction to me. You are correct. An MRI will not show nerve damage. It will show compression. Or that is my understanding. Maybe if the nerve atrophied, it might show as smaller than normal. I have had three over the years and all returned with 'No nerve compression present.' That does not mean that there was not a problem, just that compression of the Trigeminal nerve could be ruled out, so that helped rule out Trigeminal Neuralgia. They look for compression of the nerve where it comes through the skull. An MRI is usually recommended to rule out other conditions.