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ClusterBusters

JenniDawn

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JenniDawn last won the day on April 5 2018

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About JenniDawn

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  1. JenniDawn

    Cluster headache and multiple sclerosis

    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.
  2. JenniDawn

    Cluster headache and multiple sclerosis

    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!
  3. JenniDawn

    Cluster headache and multiple sclerosis

    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!
  4. JenniDawn

    Cluster headache and multiple sclerosis

    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..
  5. JenniDawn

    Cluster headache and multiple sclerosis

    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!
  6. JenniDawn

    Cluster headache and multiple sclerosis

    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).
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