JenniDawn

I did get your message. However, I've tried to figure out this mix of meds before, with no luck.. I was ingesting enough vitamins to completely omit a meal haha .. I am too broke to try again..

Finding an oxygen supplier was half of the battle alone.. But may I recommend locating one, and then speaking with your Neuro about writing a prescription for oxygen? The mask can be bought through clusterbusters.org .. All in all, I think I spent roughly $200 to get up and running with oxygen.. I am still cluster free (roughly 4 or 5 years now).. I still believe that taking the immatrex injections only semi -aborted my clusters. I would feel the beast constantly there, almost like hovering in a dark corner behind me. I had to allow the clusters to break through (very hard to make that conscience decision) and then treat with oxygen (after I had it in my possession of course).. My very last round of clusters was so incredibly different than the prior years that I swear it added up to me being cluster free now.. I've read that they can and usually do return, but for now I'm enjoying several years of cluster free days.. I quit taking varapamil because it didn't seem to help.. The cancer steroids that they gave me made me gain SO much weight and the immatrex never seemed to make them completely go away.. Do all that you can to find out about oxygen! Even if you can get to the ER to request it, in the middle of an attack (as long as someone drives you!).. Also, if I may note, I've had boughs of anger and frustration (ugh teenagers are HARD!) that sent me into instant cluster headaches.. My father also has cluster headaches (chronic sufferer) and maybe coincidently, but he also has anger issues much worse than I do.. Something to consider, at the very least, eh? One other thing! I have one of those thermometers that you put on or near you're forehead to take temperature.. My father was at my house when he went into a cluster headache one morning, and for curiosity sake, I took a reading of his temperature.. Would y'all believe his temperature was near normal on the unaffected side, and very elevated on the cluster side, especially around the ear and neck? I don't know why and I couldn't find any data to support it, but it's true.. I use to self admit myself to the ER every other day during cluster periods. When I could convince them to give me a steroid injection (this was prior to evidence proving steroids worked), it would prevent that nights cluster, along with the following nights cluster (hence going in every other day).. The hospital thought I was a nutcase, but I swear to God it worked (that was in 2010 or 2011 I believe).. I pray for each and every one of you! 2 of my 3 sons have migraines, so far no signs of cluster headaches. I've never had a migraine to my knowledge.. But the last time my oldest son had a migraine, I had him try the oxygen and it worked to abort the migraine as well

Haha! I know the feeling exactly! I STILL refuse to drink Pepsi or eat fudge because one round of clusters started the night that I drank Pepsi for the first time in years and ate fudge for the first time in years. All other things were normal routine that night... Unfortunately, even completely omitting both from my diet ever since, had no improvement of clusters (that was about 15 years ago). My recent recovery was in no way related.

Currently, no. Since being cluster free for this long, I have opted to cease ANY medications (except for OTC meds), out of pure fear of triggering the clusters to return. To be clear, I actually haven't taken any MS meds since prior to my last round of clusters.. I can note the differences that occurred in my last round of clusters, to see if anything sticks out as a possible explanation. My round of clusters was MUCH worse than normal (longer period of time, with more clusters per day, etc) I took Sumatriptan injections more often than normal, to the point that the inside of my mouth felt swollen, like an allergic reaction would do. My doctor had me take a steroid pill (he sworeI was wrong about steroid injections helping, but they really do for 1 day). I forget the name of the steroid he prescribed, but I can get back to you if you want to know. The steroid was SUPPOSED to reset my brain and maybe make them go away. I altered the dosage taken and they were effective whileI was taking them, but there were multiple times without. And they made me gain a ton of weight. After roughly 4 months of back and forth with these 2, I finally obtained oxygen. I successfully aborted my last 2 or 3 clusters, and they have not returned since then. Let me know if further details would help!

Currently, no. Since being cluster free for this long, I have opted to cease ANY medications (except for OTC meds), out of pure fear of triggering the clusters to return. To be clear, I actually haven't taken any MS meds since prior to my last round of clusters.. I can note the differences that occurred in my last round of clusters, to see if anything sticks out as a possible explanation. My round of clusters was MUCH worse than normal (longer period of time, with more clusters per day, etc) I took Sumatriptan injections more often than normal, to the point that the inside of my mouth felt swollen, like an allergic reaction would do. My doctor had me take a steroid pill (he sworeI was wrong about steroid injections helping, but they really do for 1 day). I forget the name of the steroid he prescribed, but I can get back to you if you want to know. The steroid was SUPPOSED to reset my brain and maybe make them go away. I altered the dosage taken and they were effective whileI was taking them, but there were multiple times without. And they made me gain a ton of weight. After roughly 4 months of back and forth with these 2, I finally obtained oxygen. I successfully aborted my last 2 or 3 clusters, and they have not returned since then. Let me know if further details would help!

That would work for some, but not others... I have both cluster headaches advance multiple sclerosis, but my farther has cluster headaches but no other conditions.. I've also recently, been blessed with my longest remission from cluster headaches, that I've had since getting them. Mine have been once a year (4 months or so long) every year, and occasionally they skip a year.. I had the absolute worste bout last time. They lasted about 6 months, I had multiple clusters each day (normally only get 1-2 a day for 4 months).. They came on all night and day randomly, they were lasting longer than normal, and they weren't actually going away at the end of it, they were leaving a shadow in the corner where I could feel it's existence, but without the excruciating pain... After that round, I have now skipped 2 years.. October will be 3 years..

Thank you for the in depth, VERY useful reply! I see my neuro on July 1st, I will bring this to his attention. Thank you!

Sorry to be so late in replying. I also have a diagnosis of both, MS & Cluster Headaches. I have had both for several years (15+ years). There is currently no other family history of multiple sclerosis. My father (chronic sufferer) also has cluster headaches, but no other family history of cluster headaches (multiple family members with migraine headaches though).