Leaderboard

Thanks all for the great info,,I have been saving for a long time to take the children (of which i may be the biggest).Two weeks in april staying on disney world property if i was ever hoping to catch a break with the beast its for then,fingers crossed.

These Clusters are a weird animal, what works for some don’t work for others. For example, Immitrex does not work for me as a matter of fact it makes the hit worse. Zomig nasal spray is by the best abortive med I have ever used. The problem is it gives me rebound headaches. Next best is Zomig ZMT. Maxalt MLT only works some of the time. The key is taking these as soon as you get any sign of a hit. I have talked about the rabbit hole that triptans lead me into, at one time I was going through 72 Zomig in 3 months getting hits 3 to 5 days a week. Things just kept getting worse with the triptans. I was at the end of my rope when I found this site and you guys saved my life. Now days I only use triptans when on vacation so that I do not ruin the trip for my wife. After the vacation I have to quit triptans cold turkey and take the hits until they stop. O2 helps. If it works for you use it, just keep in mind that it may make things way worse. Keep notes. Sorry for the run on reply.

The injections always freaked me out too, when I wasn’t in the midst of an attack. When the pain was on me though it got really easy to stab myself. Real easy.

Hi Jara, I was given rizatriptan wafers years ago, before I got a proper diagnosis. I know it's a migraine medicine but it was the first thing anyone gave me that did any good, I thought they were lifesavers that they could abort in 30mins given my attacks would go for a few hours. But there's a couple of attacks it didn't get, and it always left me feeling a bit foggy and sore. Once I tried oxygen I never went back to them - it's a gamechanger. I carry them as an emergency as I'm a bit nervous of the injections.

Hi Jara! If you go to the Clusterbuster Files, you will find a link titled Playing Well with Others. That will give you a list medications known or suspected as blockers of MM. Triptans are all in there as blockers. so, yes, you have to stay away from it for 5 days prior to busting. Verapamil is also listed there, but we have found that a person taking a low dose, say up to 320mg/day can still bust successfully. If you wish to pursue that bit, then please put it in the private boards: Share your busting stories or Theory and Implementation.

Hey Jara, maybe it’s me, but 30 minutes still seems like a long time. Have you ever tried o2? Stuff saved my life, literally. I just got back after being in remission and pf for a few years, but I never ever got rid of my two oxygen tanks. I can usually abort in 15 minutes tops, and when I start the o2 it stops the pain right where it’s at. It might hang for a bit before it dies but it doesn’t get bigger once the oxygen mask goes on. Anyways maybe look into it. I tried sumatriptan for a while. Pills, then the nasal inhaler, finally the injector. I had crazy side effects like skin peeling and a tight chest. Oxygen for the win in my book.

I second the idea of keeping notes. I think at this point most of us have a routine. Half full of crazy strangeness and the other half honest citizen science. Whatever works for you works for you. My go to is the o2. After that I’ve tried most stuff. Some works, some doesn’t, but that seems mostly individual. I’ve yet to hear of oxygen not working for someone. Not to beat a dead horse, but I’ve gladly paid for oxygen out of pocket. My insurance doesn’t cover it. But it’s super worth it in my book.

Capt.Crispy:. I have not tried the O2 yet, but will be getting a tank of it soon from the doc. 30 minutes is way too long to wait for relief. Thanks for the info.

Hi Billy, I always get (even more) sensitive to light during cluster, and has been an occasional trigger. I have the brightness down and night modes on devices/TVs and tend not to watch the screen often during clusters. A few years back I was given lithium to stop a cluster which (I believe) made me even more ill and super sensitive to any light - I could only go out after dark. I got some FL41 glasses (pink lenses that block blue light for migraine/stroke/concussion) and they made a huge difference in reducing the bruised/stinging feeling even after the cluster ended. I wear them less often now, but more when I'm under bright lights in offices, supermarkets or if it's overcast. I was lucky that a local optometrist let me trial them before buying. I think axonoptics do similar and may be cheaper. Good luck

Update: I haven’t taken the protein powder for 2 days now and I haven’t had a headache since! There must have been an ingredient in there that triggered a headache. Boy was it weird. Now I’m out $30

Happy New Year ya'll! Hope everyone enjoyed the celebration......meh, I turned off the tube, put on my jammies, and went to bed at 8:30! So , I ran across this poem by our very own @Fast Eddie ....I'm fairly certain it's posted here but it's been a long time.....I first heard it at either the Portland conference in 2010 or Las Vegas in 2012 when Eddie recited it....great poem by a great guy! ‘We call each other clusterheads" by Eddie Langford There are many types of headaches I'm sure you've had your share From stress and strains and migraines To a sinus one here and there But let me tell you about one friend That puts them all to shame This headache is a demon And a cluster is it's name To see a full blown cluster Is a very scary sight It can happen in a moments time No matter day or night It is the worst pain known to man It will put us on our knees We pray someone will knock us out And give us some relief We call the start a shadow A sensation in the brain That says "the demons coming back" To taunt us once again The brain turns into cornmeal mush The eyeball starts exploding We moan and cry and rock our heads There’s no doubt how bad we're hurting We call each other clusterheads Our tiny little crew Of others who are just like us Who know what we go through So please don't say you understand Just what we're going through Unless you are a clusterhead You haven't got a clue DD

You’re so right that the results have to come from the forums, as the results of the med trails are always statistical and most of the times not first hand by trail participants. I’ve been in the Aimovig trail in 2019 and Emgality trail in 2020. On both occasions trying to break my cycles as the meds (verapamil, naratriptan, sandomigran, prednisone, D3) I took were not sufficient anymore while the beast was jumping very ugly 8-14 times a day with kip 8-10 very often. I had 5 rounds of Aimovig and it did not break my cycle. It was only when I upped my verapamil from 600 to 720 that I noticed in hindsight brought the relief of ending my cycle. Aimovig had no side effects besides a minor obstipation. The Emgality I took last year also did not break my cycle, in fact this cycle started last year June and is still ongoing now for 11 months. I do not contribute that to Emgality, I believe the beast wants to ‘play’ with me a little longer than normal. I have to say that in my current cycle before I used the Emgality I had the GON injection which also has zero effect, but also no side effects. From the participants in both trail groups I understood that 4 of of 10 had positive results, their cycles did not start. Saying this, my observation is that those CGRP medicines are not meant to break cycles, it is to prevent them. Once in cycle there is little one can do apart from having your rescue meds on stand by and try to ride it out the best you can.

I’m piping in here as well. I’ve been episodic since 2008 and was very excited when Emgality was approved. I go into cycle every 1-2 years, and while my cycles began as a 6 week period, over time they have lasted months and been difficult to shake (some of that is my fault, as I am generally impatient with verapamil and prednisone due to the side effects, and trying other medications has historically made me sicker). I went into cycle in October 2019 and immediately began Emgality. I took it for 3 months with absolutely no noticeable side effects, and by mid January of 2020 my cycle was gone. I counted that as a victory and was delighted. However, I started shadowing again in July and restarted Emgality. I took it in July, August and September. By mid September I noticed that my digestion had completely stopped and I was gaining weight. By beginning of October, my cycle had started anyway. I stopped the Emgality and have been fighting since October to put this cycle down with prednisone and verapamil. I recognize the Emgality helped me get rid of it last time, but this cycle came unusually fast, had lasted unusually long, and is behaving strangely (side shifting, hits separated by days, odd facial sensations). I attribute all that to the Emgality so am hesitant to take it again. I’m very curious to hear others’ experiences. The docs don’t know anything because the drug is so new. We’re not going to sort this out unless we share it on the forums. thanks

I just injected my 4th dose of emgality. No positive impact. Still causes many side effects for me, including fever and achey joints, upset stomach and constipation, a feeling of closed in. Also, increased intensity for hits several days after the shot.

I've had since I was 17 yrs old. Finally got diagnosed when I was 27. I suffered immensely through those years and aquired ulcers from all the aspirin I took for the CH's.