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ClusterBusters

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Showing content with the highest reputation on 11/26/2019 in all areas

  1. 4 points
    Having a diagnosis is very important because it excludes other conditions (Tumors, anatomic variations and treatable causes) and saves you from wasting time with treatments that have been proven not to work (oral imitrex, botox, surgery, most medications). You can also concentrate your self education efforts with a laser focus. Do not expect the medical establishment to take charge and treat you. You must direct your own treatment within boundaries you set. Cluster headaches are a diagnosis of exclusion which means after ruling out other potential causes all you are left with is cluster headaches. The criteria are pretty straight forward but overlap some other conditions. Many headache conditions respond to imitrex, very few respond to O2 therapy used properly. i am going to try and attach an article from "Up to Date" which is an online "go to" reference for many physicians and mid level providers. It is a peer reviewed, frequently updated, referenced resource designed to help experts and non experts stay abreast of treatment guidelines for many conditions. The attachment are treatment guidelines for cluster headaches and you might consider printing it off and bringing it to a provider or ER visit as you seek a partner to manage cluster headaches. The attachment is a bit large and may not be allowed to be updated. Maybe an administrator can help if it doesn't upload. You can PM me if you want and I'll email it if you wish. @CSA get a diagnosis. uptodateguidlines.pdf
  2. 3 points
    jon019

    Trying to understand my experience

    hi csa...welcome, ...what is your diagnosis? who prescribed the sumatriptan...if oral, it's pretty useless as an abortive, inject or nasal far superior....sounds like you need a headache specialist, or a different one (and not just ANY neuro).... ...ER is basically worthless for CH...they rarely see and don't know how to treat anyway....your hit will end, they will proclaim success and send you on your way with useless shit like fioricet....they may or may not respond to a carried letter, I sure wouldn't count on it...tho carrying a letter might be beneficial if you are ever incapacitated by a hit... ....my idea of beauty is an O2 tank with layers of dust...the peace of mind of availability is priceless (what would you pay to stop something a million times worse than child birth?).... and you already know it works... ....somewhat typical to get worse over time from initial onset...but that is NOT a given... .....CH is only going to increase your anxiety/depression...but also could be unrelated...get that treated regardless of headache diagnosis.. best jonathan
  3. 1 point
    CSA

    Trying to understand my experience

    Thank you both for the advice and for giving me a bit of perspective. I do not have a diagnosis. The oral sumatriptan was prescribed by a headache specialist just after my first cluster headache because of 'atypical migraines.' I was having daily headaches at the time. I did a trial of Topamax that didn't help and then an antidepressant that did for a month but then caused really bad insomnia which then triggered the headaches to start again. I moved out of state at that point and never followed up with another neuro because the headaches were manageable. The neuro never had anything to say about that first cluster headache. I realize I have it relatively mild compared to most. That's not lost on me but you are absolutely right that the peace of mind would be priceless. I live nearby a university headache center that includes psych providers in house so I'll try getting in there. This may sound dumb but I didn’t realize you could just have oxygen sitting around for years.
  4. 1 point
    Pebblesthecorgi

    Trying to understand my experience

    In reality there is not much an ER can do for a cluster attack except get in the way of proper treatment. You had a typical experience and the ego of the PA likely got in the way. PA's generally practice under a physicians supervision and they may have protocols that require them to contact a physician if they have to escalate care (for instance use high flow oxygen) because the attending doc may want to be aware someone needs increasingly aggressive care (like heart failure or non responding asthma). The PA probably didnt want to bother the doc and get yelled at. Either that or they are just a jerk. Clusters can be occasional and or one off's. Only the frequently hit or chronics tend to hang around here. I have not had an attack in over a year and never get more than 100 yards from my O2 tanks (home, office, car, parents all have tanks and regulator)
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