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ClusterBusters

Jost

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About Jost

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    Arizona
  1. Jost

    Intro / Vitamin D

    @Batch It would be good if the wiki were updated with this information as I just started and that is the guide that you had sent me. Therefore I am using with what is posted there. In any case it's too early to tell if it's effective for me or not I'm afraid but I'm willing to give it a try but can't afford to switch D3 now. I may not be following the regimen correctly anyway. I also add a lot of Vitamin C which I usually do during these episodes. I am not even sure what loading means. Unfortunately I went from a wicked cluster headache episode to a pretty bad migraine a few days ago. My family doctor is pretty good with my headaches but it turns out I have a sinus infection, inflamed bronchi and a lot of chest congestion. I live in Phoenix where the heat is very high and we've been having bad air quality alerts for several weeks now. This year the density of the dust storms with no rain and the pollutants in the air have been particularly thick. I am convinced my headaches are related to and triggered by heat and air pollution as well as dust since every time I have an episode some or all of those factors come into play. Rain no longer (or rarely) comes into the city effect to clear the air and wash things down due to the urban heat island, only the haboobs make it in. It is the main reason I am moving north of Tucson in a few months. In any case I'm not sure what to think any longer and am hoping the antibiotics, chest syrup and imitrex doesn't screw up anything else and I do feel better today but don't know what to attribute it to. Can anyone tell me why the several doctors I've asked about oxygen have waved it off for headaches? As if it was some "internet babble" as one put it? Years ago one doctor gave it to me in the office and it helped a lot on that day. Anyway I didn't mean to hijack @RSG question as I am a newbie also and it is a good one. I'm just in a bad spiral where I don't think anything will help and it's hopeless. To him I would say to try it if you understand how to follow the regimen as it seems to have helped a lot of people without complications.
  2. On reddit there is a subreddit AskMenOver30 which is not my age group since I'm much older. I read it to see if I can answer anything. A young guy in his thirties was asking what he could do to support his wife when she "goes down" during a migraine episode. He helps with the practical things like the house and kids but he knew he had a "terrible bedside manner." I was quite stunned at the number of young men who replied and their cluster headache experiences. They were talking about it to explain what it does to their lives in order to help the original poster understand what it was like to go down. Man do I wish that I had that type of resource thirty or more years ago when this started for me. I'm fortunate and thankful to have a spouse that knows when to sit with me and when not to and take care of things. That alone has been a godsend and helps me stay on the path of a decent life. In a sense I was fortunate because my grandfather had cluster headaches and I had some context to understand that it wasn't my fault. Still the anger and frustration that I was being robbed of days and weeks. That the headaches were stunting my life and stealing time from my young life. I didn't want to be an old man like my grandfather. This year I had that awful feeling the cycle was starting up again and I didn't want it to become self fulfilling prophecy but there it is. I am very glad I also found the subreddit Migraines where a long ago post directed me here. The resources help but it is more knowing that it is not just me and I am not the only one going through it.
  3. Jost

    Newb here

    Interesting about diet and certain foods. I eat a very healthy diet but wonder if there is something specific that can trigger a CH at a certain time in a cycle.
  4. Jost

    Newb here

    @CHfather Thanks for the reference. I'm going to get in touch with my doctor on Monday regarding oxygen. Over a couple of decades ago before I got a correct diagnosis my doctor at the time was out of town and I saw one he brought in. She gave me oxygen in the office and I had forgotten that.
  5. Jost

    Newb here

    @Freud Wow. More info on here than I've found in years. Thanks for the helpful reply. I know the pills aren't very effective but they're the best I have. They're helpful if I'm episodic and catch it right before lightning strikes. My eye usually does the foreshadowing. I'm leery of rebound with sumatriptan and try to keep that in mind and the same with pseudoephedrine and caffeine but there it is. It is not a very good solution right now but except for nasal spray it's all I know. I need to explore how to get oxygen and a tank as I'm naive on how to do that as I'm reading a lot that it works. I'm squeamish about injecting myself but I could get over it. I had forgotten about nasal spray and am going to try to get that. Additionally I've never heard of a kip scale but researched it quickly before replying. I've been at 10 before but not in awhile and I would like to not escalate this episode beyond the 7-8 it's gotten to. I did find a sub on reddit that has some useful information. I'm open to trying anything. My family doctor recently has become overly cautious on everything not just this therefore not very useful on anything lately. I have another doctor I can contact for prescribing that I think will be helpful. Obviously I'm not very knowledgeable about resources and clearly need to figure it out fast because I do not want to get to the part where I'm writhing in pain. It's been a few years but I've been through it before and don't want to again. I'm not really up on terminology either which means I'm not very articulate. I'm feeling very out there trying to figure out how to fly this plane without crashing. Again thanks for your reply and I'm searching around on here to glean as much as I can.
  6. Jost

    Newb here

    tl;dr I'm brand new here. I am going through a wicked episode that typically happens every seven years and lasts about six weeks. Normally I have CH several times a year but for 3-4 days and can treat sufficiently. Right now I'm limping along stretching meds out and struggling. Does anyone have suggestions because I have been flying solo on these episodes for decades now and it gets pretty confusing. New here also. Very glad I found this by google search for cluster headache. I can echo the stories here for sure and the teeth pain description Trucker gave fits. Have had these headaches for decades in isolation pretty much. My grandfather, my dad and my sister had them but no one knew what they were or how to treat medically. Two of my nephews get them so I have to assume there is a genetic component. In 2007 I found a neurologist who knew exactly what I suffer from and gave a name to it other than sinus headache or migraine. The dental pain I understand because I had a really good old school dentist who did my orthodontics way back in the day and he gave a pretty definitive explanation after I had visited the neurologist. Right now I'm going through my worst episode in seven years which seems to be the pattern. I get CH each year once or maybe twice and treat with imitrex, pseudoephedrine, caffeine and ibuprofen or aspirin because right or wrong that is what I know and gives me relief. I'll get headaches like clockwork twice a day for two to three days three to four times a year and treat them and can function normally pushing the wicked back into its crevice. Then around every seven years I go through the whole cycle that lasts a minimum of six weeks or longer and it's very intense. That is where I am now. I'm very interested in cluster busting as described in the "New Users Read Here" info page. I have a history around meds that is a long story and I would like to find out more about this topic. I did the traditional thing of having my imitrex filled every month to get a supply when I really needed it. I lapsed in that and now my regular doctor and insurance is doing the usual "no more than nine a month" but fortunately my pharmacist filled this months early under a cash discount coupon. I'm struggling through with half doses at a time to keep things at bay at least.
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