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It sounds, to me, like you have bad heavy shadows lasting 2-3 days with your clusters in between. As in you get a shadow and tells you an ice pick is coming. Then you get the cluster and it resolves, but not completely and you still have a heavy shadow. Caffeine and ginger (tea, pill, candy) are very good for shadows. O2 will also help. The 'ice pick' part you describe is the Cluster and fits the time frame. The pains in between are shadows and other nasty shite from CH. Like getting a Cluster knot on the back of your head or neck that hurts like the devil and puts you on notice that a hit is coming. I am shocked regarding the 'medical' treatment that you have received! Have you ever had an MRI? Anytime in the last 5 years have you had one? You need one! It rules out 'other' stuff and helps clarify your CH situation. CH will not show on an MRI. In my opinion and we all have one, your treatment is barbaric. 'We can get O2, but it will take a while. How about some shots in the mean time? And I will see you back in three months. I hope that you have a PCP that you trust and who will work with you. He/she can get you a MRI and give you a Pred taper for a week. Just to see if it kills the hits for a few days! They can also start you on Verapamil, but will most likely go with a low dose. You want short acting, not ER when you do get the Verap!! I'm going to skip down and read Jeebs post and go from there Cursed. You have truly been put through a ringer and not offered a stinking thing. Your rant is fine and don't apologize for expressing your pain or frustration. We do know it!!

...been doing this dance for decades and have never seen a more apt description...wow...exactly! are you a writer...your phrasing in your posts is amazing. ....it sounds like cluster within something else. aint no rule says you can only have one HA type. i'd say find a specialist....but i think you need a DIFFERENT one...sheesh.. ...i didn't drink alcohol for YEARS, even out of cycle, because one of the few actual 10's i've had was a post drink hit from the depths of hell...scarred me. that said, Imitrex can be near miraculous and i would actually try again. as with O2, must be used at first hint of a hit otherwise likely to be ineffective. it making a hit worse is a highly unusual cruelty beyond comprehension. i'd hope a coincidence, but understand any reluctance.. ....beta blockers useless for CH...just one more migraine med thrown at us. opiates equally useless with the potential for introducing other problems.. ...as has been said, it is beyond comprehension why a prednisone or methylprednisolone iv/taper has not been tried to give you a break while ramping up verapamil (calcium channel blocker much more successful than beta blocks) verap is sometimes needed at very high doses that PCP's are reluctant to prescribe (i used IR 480 mg/dy in low cycle, 980+ in high)... ...there are clusterheads who have found relief with ketamine. i know nothing about, but is worth looking into, especially with an experienced HA specialist... ....start the whole D3 regimen yesterday...ya got nothin to lose.... ...i would insist on a indomethacin trial to rule out HC, like Jeebs and spiny said... ...you are on a busting website, might be time...there are non-psychoactive options if that's a concern... ...in the place you are at i would be exactly the same, so this total spit balling. some folks believe a trigger must be an immediate effect...while some indeed are, i do NOT believe all are. delayed reaction entirely possible.. probably old news to you, but for suspected (not the knowns like alcohol and msg) i used to do elimination/re-intro diets where i would totally eliminate a type/class then slowly re-introduce....carefully noting hits before/during/after. the only one i found for sure was aspartame, most of the migraine no-nos made no difference (e.g. nitrates, tyramines in cheese and fermented foods, glutamic acid containing like tomatoes and mushrooms ), sorry, this sounds lame but it's all i got for now.... .....asking a clusterhead to "be patient" is medical malpractice. get the damn script, go talk to the O2 shop, offer to pay out of pocket if necessary, or take up welding tomorrow. you need to find out NOW if O2 works for you. read the files on proper use...very important. this could be life changing all on its own... ....no reason not to try the Emgality. no reason to delay a nerve block...do it! it will either work or it won't, there are minimal (if any) negative consequences... ....absolutely keep searching for a diagnosis....undiagnosed ailments get treated with the whatever is handy. HA can be hard to diagnose, avg clusterhead mis/undiagnosed for 3-5 yrs....proper treatment, in the end, relies on diagnosis and the right practitioner...

OW. Kudos though for finding such an evocative description. Meantime, just consider me one more from the legions of @spiny worshippers , and I'll say your description doesn't sound like typical cluster to me, though I'm nowhere even close to being a diagnostician. So for all I know, "atypical cluster" might be accurate. One way I could try to categorize what you are describing would be cluster attacks with constant shadows in between. CH'ers are known to deploy ginger for quelling shadows (lower level, lasting cluster symptoms) BTW. You've probably noticed that there are diagnoses out there like cluster migraine, or for constant CH-like pain, Hemicrania Continua? From Googling: Hemicrania continua is a chronic and persistent form of headache marked by continuous pain that varies in severity, always occurs on the same side of the face and head, and is superimposed with additional debilitating symptoms. on the continuous but fluctuating pain are occasional attacks of more severe pain

It is said that sucking ice water through a straw aimed at the roof of your mouth will also accomplish the desired "brain freeze."

Back in February of this year my neurologists decided to try me on emgality at 300 mg each month for 3 months. The first month I took the medication I had zero migraines at first then as the weeks went by I started getting cluster headaches totally off season for me since my cluster headaches are every three years for approximately 18 weeks and I had them last year. The clusters brought on by this drug were not normal for me in other ways too. My normal clusters hit hard level 10 last about an hour without medication (imitrex) and I get them multiple times over the course of each day and night. yet the ones caused by the emgality were approximately 2 per day (24 hours) and rarely passed a 5 on the pain scale. after the first time I took it the second month not realizing it was in fact the drug due to me having a root canal done in the first month. The second month the clusters got worse right after taking the second dose and I noticed other side effects such as eye strain, joint pain all over and some stomach issues. as the month progressed I noticed the clusters got less intense and then I took the third dose and it got worse again only this time my migraines were normal as before I tried this medication so now instead of helping at all it just made life worse for me. So in closing I would not recommend this drug. Hope this helps someone, Mark

...if there's such a thing as a "standard treatment" for CH...this is it. many a clusterhead has found temporary relief while a prevent like verapamil is ramped up. i did a methylprednisolone IV/taper twice. the first time it stopped a cycle (mid-cycle!) which was incredible but rare...the second time no effect. none further since i didn't want to get on that particular merry-go-round long term.....and verapamil/oxygen/energy drinks/perhaps D3 were effective...... ...certainly worth a second attempt at sufficient dosage....

Hi Twisted . Yes you really do need to start the clock again 5 full days off triptans. Then you can start your bust . I'm no expert but have busted with L twice know I use 200ug tabs first dose is 1 full tab then 5 days later another full tab then again 5 days later . I've just finished my 3rd dose and have been 9 days total pain free . I don't think their is a certain IF level you need to use but the higher the UG the bigger the trip if that's what you want . You may Adele enjoy it if your gonna do it . But be careful as you can have a bad trip have a sitter with you that can bring you out of any bad trip you have is the best thing you can do . If you have commitments that doesn't allow you to spread the for see to 5 days you can do it on the 4th day or 6th day . Hope that helps

Generally successful at stopping the pain for a while. Generally not successful at breaking a cycle, but sometimes it does. The dosage recommended by a leading expert is 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks.

I'm no doctor but I'd say it's CH you seem to be having shadows between attacks as a lot of us do which are not as painful but are just as debilitating. . Triptans don't work for every1 with CH . Ginger can really help with the shadows . If you have to wait for your 02 can you buy it instead to give it a go . . Can you get a second opinion on your diagnoses. . I understand you think your life is messed up but once you have a proper diagnosis. You can get the tools to fight this . Yes we all have bad days buddy I promise but we learn to live with it and we know it's not going to kill us . Plus the pain free days are so good we learn to appreciate life so much more . Hang in there my friend

Agree with all the comments above. The fact that you had such a severe bad reaction to Imitrex might support a hemicrania diagnosis, since hemicranias are generally not responsive to triptans. (They are also not generally responsive to oxygen, but you still should push as hard as you can for O2 -- as Jon' said, if necessary, get the prescription and self-pay, or go to welding O2 (we can tell you more about that)). This distinction doesn't make any real difference, but since you get periods of relief, it might be paroxysmal hemicrania rather than hemicrania continua. https://www.ninds.nih.gov/Disorders/All-Disorders/Paroxysmal-Hemicrania-Information-Page There are some parts of what you describe that aren't really consistent with typical hemicrania (length of the severe attacks), but as has been said, a fair test of Indomethacin will help you rule that diagnosis out or in (as will a test with oxygen). A test of Indomethacin usually starts at 25mg three times a day. This is a relatively low dose, but you have to see if your system will tolerate it. Can go as high as 75mg three times a day before you really know if it's going to help. Prednisone also typically helps in the short term with hemicranias, as it does with cluster headaches.

If all I could get was a nasal cannula I’d either fill up a bag like the redneck posts or I’d put the cannula in my mouth and fill my lungs. I know a cluster head that does that...

Nasal prong really are no good buddy when I first went to ER unit at local hospital they would always use them would never help . If you can't get a non rebreathable mask at present I'd inhale straight from the tube

Take 2 1100mg ginger capsules a day keeps the shadows away !!!! . I ran out of o2 1 day so just went out to the car and turned on A/C and inhaled straight from air vent managed to abort 3 attacks that day until o2 was delivered

...try breathing directly from tube....mixing room air with O2 is a waste of O2