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Snazzy93

Completely new cycle

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Hi all! I've followed this forum for years, and found it very helpful!! 

I've had cluster headaches every fall for about 9 years now. They started when I was about 17, and I'm now 26. My usual cycles start within the last two weeks of October almost religiously, and last between a month-6 weeks.  Usually the cycle starts bareable (maybe 1 or 2 little headaches a day.) And peak at 2-4 per day, at least one of which is absolutely excruciating. Usually I feel the headache start in my neck, and within minutes it's in my forehead/behind my eye.

 

My question is, this year, I'm experiencing a cycle right now...in June. This is an absolute first in the 9 years I've been dealing with them. Has anyone else ever had a random cluster cycle after suck a long pattern history?

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You will find by browsing the site that this is fairly common. People have the cluster cycles change all the time and it is totally normal. This change can be a one time thing and you will now get your clusters every June or it could just be added fun for you only this year and you go back to the end of October. 

Have you changed anything recently to cause this to come on this year? Diet, move or any sleep pattern changes? This can sometimes trigger a cycle for some. 

What do you use to abort your attacks? Do you have oxygen set up? Try looking into the D3 regimen created by Batch, this can be taken all year round, is only over the counter vitamins and has been reported to bring extended pain free status to some people. 

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Nothing has really changed this year except a huge amount of stress. (probably has been affecting my sleep now that inthink about it.)

I got married in mid may, and my mother was flown to a hospital 3 hours away for acute liver failure 2 weeks before the wedding. She's home and doing well now, but it was a 2 month ordeal getting her health back. What's weird is this cluster started when things started calming  down. 

 

As far as what I do about them, basically nothing because our medical system in my area is HORRIBLE. (That's why we flew my mother 3 hours away.) I've used oxygen, (I know a guy that works at the pharmacy and filled tanks for me, because the doctors in my area refuse to acnolage that it really does work.) 

I also have a heart condition which hinders my use of triptans. 

 

In the past I've used prednisone and it works, but i get SUPER moody at the high doses needed to work. 

 

I'm for sure going to look into the d3 regimen.  I can't believe I've never seen or heard of that before

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Now that you are a member you have access to other parts of the site. Be sure to look around and ask a tun of questions. Click on the banner at the top of the page that says new users read this.

A lot of times stress will hold the clusters off and relaxation will bring them on. Some get them every day on the way home from work or just after getting home from working when you can relax a little. Some also get more on the weekends and days off. 

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@FunTimes hit it on the head the extreme reduction in stress is a huge trigger I have seen come up on the boards a lot. Prednisone comes with its own set of risks. It doesn’t do anything for me plus I’m chronic (can’t keeo taking it) so I’m not sure if I’d take it if it worked and I was episodic.   Funtimes probably got his avascular necrosis of his hip requiring hip surgery from taking steroids and he said he’s only taken them 2 times in the last 6 years I think. It’s one of the more rare adverse effects but it does happen. The link often gets missed because it can take months to over a year for the dying bone to cause pain and require surgery. Vitamin D and oxygen plus busting are the perfect trifecta for most of us. Clusters are always changing, no two people are the same, and you don’t always respond the same to a previous treatment.  

 

Good luck and pain free wishes to you!

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Cathb357... feel like a veteran Been doing Clusters now for 40 years. My first I was 19 and not another for 7 or 8 years later (Hind Sight) My husband and I liked to trip and during the first 8 years of our marriage we would trip occasionally 4 or 5 times a year. After I became a mother, priorities changed and I quit. 3 or 4 sessions in my 30's and 40's very clueless during these attacks, usually triptans and opiates and have 3 steroid protocols. Then in my 50's the "ramp up" maybe related to hormonal changes but definitely a tighter episodic circus. During this particular decade we (my husband and I) discovered CH Busters and are so grateful this dedicated group and the collective information available. I have settled on RC seeds and unless confused about the onset of CH I start busting until they are returned to remission I prefer to include shadows as well. Oxygen, Ice packs, cold carbonated caffinated drinks until individual attacks are abated. My diet is frickin pristine, mostly keto, supplement for CH support and abort. Currently in a bout, (this a common time of the year) have busted twice with RC seeds over the last 10 days. the seeds are now 3 years old and was what I had available, I have another 12.5 grams coming from Transplants. The reason I am relating to the age of the seeds is that they may be loosing potency, however, I still on 50 seeds catch a pretty good buzz and for me not the most appealing experience. Now my question/ Yesterday afternoon I took a well hydrolozied dose of 50 crushed seed slurry and chased it with lemon juice and water to clear the bitters...lol by the book at about 5pm. I keep a zanax handy if the anxiety from the trip gets uncomfortable and I have done the zanax and the slurry and just gone to bed. So last night I had come down and I wanted to go to bed It was about 9:30. I took a .5mg of zanax. I went to sleep. at Midnight I wake up with a KIP 9, groggy and surprised I was getting such a hard hit and just after the treatment. So I get up, back to O2, Ice, drink and abated by 12:40. The question1. Has anyone suggested that Zanax may alter the course of a bust? good or bad. and because my experience with slapbacks is limited, do I stay my course of busting, which I know the answer. Any feed back is appreciated. Peace, Hope, Love! 357 out!

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Hey Cathb357, I just want to clarify, u managed to go headache free for around 7 to 8 years after your first bout at 19? Would you attribute to tripping throughout those years?

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Dana, absolutely would credit LSD for the remission., however, I was young had a different hormone profile, I was an aerobics instructor and my remissions after my 20's have continued to be spaced out so much so I did not fully understand what was happening when a bout would pass through (For sure at 59 I Just do not really like tripping any more) It has been 3 years since my last encounter and subsequent bust. This bust has been  particularly difficult. This day after yesterday's RC seed bust I have had 6 hits and this 6th one has been pestering since 4 pm now over 4 hours... not normal.. Usually O2 and Ice will make the final determination in less than an hour. I am taking a break taking some Kava and kratom helps calm me down and takes the edge off while I regroup. Now 9 pm and this one seems to be passing. Sweet Jesus! Really looking forward to fresh seeds and Bust on Wednesday. 357out! 

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Well best of luck with busting, I can only imagine how bad the slapbacks might be, as a younger sufferer it is encouraging to hear people get such long periods of pain free living with that kind of medicine, out of curiosity are you on the d3 regimen?

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On 6/22/2019 at 1:59 AM, Dana129 said:

Well best of luck with busting, I can only imagine how bad the slapbacks might be, as a younger sufferer it is encouraging to hear people get such long periods of pain free living with that kind of medicine, out of curiosity are you on the d3 regimen?

Dana, not exactly, but last D25 H was at 100 and I am a conscious consumer of high quality low carb whole foods and pretty mindful of anti -inflammatory foods and supplements. I am curious and am looking into the protocol and am leaning toward just following the regime. Thanks for considering me as younger... mindset yes,.. interesting today I did get set up with some lidocaine and gave it a whirl. I did not have any current CH activity, but for me in the daylight not so much unless I fall asleep, so I really wanted to take a nap as the nocturnal hits harass me out of real rest. I laid back and followed Bob's description of method, The liquid was somewhat nasty but I laid down a little later for a nap and slept, and slept pretty good, for just over 2 hours, no ch, no real ch all day. Tonight will continue to probe the possibility that the lidocaine can help with coping between busts. Looking forward to Sunday Bust day. Will keep posting. Peace and PF. Cath.

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