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ClusterBusters

Jost

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Everything posted by Jost

  1. Jost

    Prescription Frustrations - long rant

    @kat_92 This is another example of why it's sometimes easier to just pay cash. Similarly I use a GoodRx coupon to sideline the limitations of nine sumatriptan a month per insurance. The doctor writes it, I get the nine and if should I need it a week later the pharmacy fills it using GoodRx coupons.
  2. Jost

    Prescription Frustrations - long rant

    @jon019 You're right and at my worst moments last summer it would have saved me from the total agony of "10" attacks that came like clockwork every 12 hours. If I'd have been prepared ahead of time it would have saved my daily life and allowed me to function I'm sure. The key is being prepared and therein lies the rub. Obtaining oxygen is not easy either way and more complicated than it should be. I appreciate that is something a lot of people on this board fight for. Whether by prescription or "homemade" it shouldn't be so difficult. The fight to fill a prescription is exhausting and if I didn't have a nephew who does welding I'm not sure I could put all the pieces together for my own kit without some difficulty. Now that the vicious CH cycle has morphed into something more manageable it is time to look into oxygen.
  3. Jost

    Prescription Frustrations - long rant

    @CHfather Thanks for the link! I must have searched in one forum and not all of them. In any case it's quite helpful.
  4. What are all these new drugs and do they work with cluster headaches, migraines or both? It seems as if the triptans were the wonder drugs for years and suddenly there are all these other options. Now there's Ubrevly and like Emgality and Ajovy there are no clear answers for the average person. Are they all chemically related like the triptans? Has anyone unraveled the enigma?
  5. Jost

    Prescription Frustrations - long rant

    This is why I cringe on this forum when someone glibly tells me (or someone else) that I should be on oxygen. As if I hadn't considered it and the hurdles aren't insurmountable. I haven't found a doctor yet who over the years hasn't waved me off with the request. Much less have the chance to try to get it filled. It was kind of a bummer reading this because I have been thinking about trying again but probably not now. What's the deal with welder's oxygen? My nephew does welding and he does it in his garage. Should it be easy to setup for medical reasons? Is there any info on here in a single place by any chance?
  6. How are people getting oxygen? The doctors around here are squeamish about prescribing it. Why is that?
  7. With CH an abortive needs to be faster acting then a pill unless you catch it very, very early in the game. It doesn't sound as if Ubrelvy would be any better than a triptan in that sense.
  8. Jost

    New to the group

    Do you have your answer now? Is it possible the D3 regimen help or harm it?
  9. Jost

    New to the group

    I just moved about 40 miles away from my current doctors and am going to change. When I lived in this area before the nurse practitioner I went to was much more open minded. She's narrowed her patients down to a specific category but has another one in her office I'm going to try who I hear from sister in law is like minded. We'll see about oxygen and other topics. Perhaps I should venture onto the other boards on here.
  10. Jost

    New to the group

    I'm a minimalist with meds and believe less is more and like to test things out without cluttering it up. My intention wasn't to be critical rather just pointing out that anecdotal may be all we have. That certainly was the case 50 years ago when trying to survive CH when they didn't have a name for it. As far as non prescribed methods I've never found a doctor who didn't cringe and shrink away from discussing it. They don't even want to acknowledge marijuana much less anything else.
  11. Jost

    New to the group

    Relatively new here since July and have lurked a lot but posted little. I had my worst CH episode in over a decade from this past June until October to be followed by my first migraines. Still trying to sort out a lot of things including if the migraines are rebound headaches from sumatriptan. I'd like to get away from triptans all together if it's possible. I'm not a skeptic requiring a lot of hard evidence rather I want to feel better. Ahem...anecdotally: I've been doing the D3 regimen since late July and I can't prove anything but I have a pretty good sense it played a significant part in ending the vicious CH cycle I was in. At the minimum it sure helped me all around nutritionally and with my moods. Melatonin has been helpful since my previous vicious cycle in 2007. It was recommended then by a neurologist and every time in the years since I stopped taking it anecdotally the less vicious CH returned. Likewise with the gabapentin I was prescribed for withdrawal from benzodiazepines which seems to have helped with neuropathy with arthritis and anecdotally CH. I dallied around and didn't go to a neurologist this last go round for several reasons and in hindsight I view it as a mistake. Anecdotally (that word again) more than a few people in real life have told me oxygen was a godsend for them. My family doctor refused to prescribe it because he's big on sending to specialists and was upset I wouldn't go to a neurologist. He also won't go over the 9 sumatriptan a month drill. The spine doctor I go to for significant osteoarthritis I have from injuries and inherited rheumatoid arthritis also calls himself a pain doctor for Medicare purposes. He is willing to up the sumatriptan and over the 9 a month I can do a GoodRx coupon which is reasonable. I think he also is willing to go to bat for the oxygen. Speaking of arthritis I'm not so sure that the medications I take for it isn't also possibly at the root of the cycle this past summer along with benzodiazepines withdrawal. I just don't know but I've learned a lot from lurking here and my 2020 is going to be renewed focus on regaining my health. I'm willing to try emagility but I am put off by the cost. Also busting but I would have no idea how to go about obtaining anything. Both of those things leave me feeling pretty helpless on those ideas. I'm not sure what I'm contributing to this post if anything but if there are any suggestions that might help anecdotal or otherwise I'm open to hearing about them.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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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