Kyle Posted February 13, 2017 Share Posted February 13, 2017 I am 28 and this is my first time posting! I had my first cluster headache 5 weeks ago. It has been a terrible few weeks to say the least and depressing to know I have what is usually a chronic condition. I had a normal CT scan done at the ED and was later diagnosed with cluster HA by my primary care doctor, and neurology appointment upcoming. After reading these forums, I began taking the vitamin D regimen about 2 weeks ago. My pain improved fairly dramatically over the last week and I only need a couple Tylenols at some point in the evening and in the middle of the night usually. My eye isn't even red anymore for the first time in 30 days!! THANK GOODNESS for this forum because I didn't hear about Vitamin D regimen in any of the medical websites (UpToDate, Medscape) It could be a coincidence that my pain improved after I began taking the regimen, but that's kind of my question...When you all get in a cluster cycle episode, does the pain usually taper down over the weeks or does it stop suddenly? Thanks for everything. Quote Link to comment Share on other sites More sharing options...
jon019 Posted February 13, 2017 Share Posted February 13, 2017 Hi Kyle...welcome...sorry you have to be here... It's a good question but while we are all in the same boat we are all different too.... In my case...when episodic...a cycle would ramp up slow...last 6-8 weeks at high intensity...ramp down sloooooooow...then end with the worst hit of the cycle. I used to pray for that massive hit because I knew it meant the end... Best Jon Quote Link to comment Share on other sites More sharing options...
Kyle Posted February 13, 2017 Author Share Posted February 13, 2017 Okay thanks very much. How they tend to end isn't something I've read about on here/anywhere yet!! Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 13, 2017 Share Posted February 13, 2017 I would venture that for most people their earliest cycles were often shorter and the pain was more manageable. Maybe I'm wrong about that; it's just my sense from what I've seen and read. So it is very possible that your cycle was ramping down on its own. Since it's also very possible that the D3 helped, you should definitely continue it. It's rare, but not unheard of, for the D3 to kick in within a week. (It's very much unheard of for Tylenol to help, so I'm going to guess that it isn't actually helping.) Your doctor prescribed no meds? Do you know what to insist on from the neurologist? First of all, OXYGEN. Absolutely first -- 99% of people with CH will tell you that. Yet half of neurologists fail to prescribe it, even after diagnosing CH. Then you might want an additional abortive, which would be injectable sumatriptan. Not pills, and probably not nasal spray: injectable. And maybe a preventive, which is typically verapamil. Since you don't know what form your cycles are going to take -- could be every six months, might not return for years -- that will presumably be taken into account. So even if you don't get anything right now if your cycle seems to have ended, you need to know that this specific neurologist is someone you can confidently turn to when/if your next cycle arrives. There's a lot more for you to know, so you should continue reading as much as you can here. Please also read about busting, in the numbered files in the ClusterBuster Files section. At the very least, it's an option you should have in mind when your next cycle rolls around. Many people will tell you it's the best way to manage CH, and it's why this specific website/message board were created. 1 Quote Link to comment Share on other sites More sharing options...
amon10 Posted February 13, 2017 Share Posted February 13, 2017 Hey Kyle try not to get too depressed, not everyone becomes chronic. 25 years I've been episodic and you are also at a great place to learn about different treatment plans. I would recommend trying to get the blood test for the D3, this will give you a better idea what's working. Like Chf has mentioned OXYGEN! I wasted many years not using this highly effective abortive. If your Neuro won't give it without a valid reason, I say he is probably not your best bet. Last start a log, either paper or electronic. This will become invaluable for you going forward. Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted February 13, 2017 Share Posted February 13, 2017 Hi Kyle, Sorry to see you are here. But better here than on any other (medical) website in my point of view. My pains stop pretty fast normally. A sign for me always is that I don't wake up with an attack. I have made an app to register your attacks and all you do to feel better. A simple tool that helps you keep track of what you do with the push of a button. It could help you get a clear view on what you have done. Maybe not now but after a first year of cycle you will know your rhythm and you will see better the results of all the things you will try to get rid of the attacks. You can download it for free on android or iPhone just by looking for "Register your Journey" If you have questions you can do it here or with a PM 1 Quote Link to comment Share on other sites More sharing options...
senstrom1 Posted February 19, 2017 Share Posted February 19, 2017 hey kyle sorry to have you brother, you will learn alot of stuff you dont wanna know in the time ahead but it is all helpful. I have always ramped up kinda slow but then end abruptly. i started off episodic for the first 3 years and then turned chronic for nearly 10 and then just nothing for a year and a half, back into a new cycle now and even after all this time i have no real expectation of what will happen next. i know none of this is making you feel better but when it comes down to it we lean on each other but fight the beast alone. best of luck brother Quote Link to comment Share on other sites More sharing options...
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