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Posted in Unusual changes with CH. on 06 Apr, 2021 - 9:03 pm

Hey all.

I've been an episodic sufferer for 10 years now, currently 30 turning 31 in a few months. For the last 10 years my CH has been like clockwork. Generally around the changes of season, 4-10 week bouts, every day, easing into every second, third etc until bout is over. Triggered by alcohol when in season, generally hitting after 1.5 hours of sleep etc.
Whilst they were brutal at least the bastards were consistent.

However, in the last 6 months, they've evolved. My regular seasonal bout for spring started as usual, but only lasted a week. After a week pain free, I cautiously had a drink (this is my test to see if the bout is over, whilst I sit next to the oxygen waiting to abort if required) to discover being pain free. But now, they are random. I'll get one every other week, seemingly out of the blue. Waking headaches are almost non-existent. Alcohol rarely triggers them. This has been consistent for the last 6 months.

Whilst this is arguably easier to deal with, and they are far less painful than my regular episodic bouts, I am concerned. I have an appointment lined up with my GP and Neuro to consult, but has anyone else experienced something like this?

I have concerns maybe I've been experiencing something that isn't CH recently, or at all for the last decade even though I'm diagnosed and every symptom has fit the bill until recently.

Thanks for anyone who replies. Cheers.

Posted in Getting Oxygen Treatment on 06 Apr, 2021 - 8:55 pm

Hi guys,

I got on oxygen therapy through my gp. It wasn't hard, she just wrote a referral letter to BOC healthcare who delivered my first cylinder and gave me a short safety course around keeping and using oxygen in the home. Hope this helps, if your GP is difficult I suggest trying a new one.

Best of luck.

Posted in Indocid anti-inflammatory regime on 22 Oct, 2019 - 10:55 pm

Just an update on this treatment a few years on.

The indomethacin was effective for one bout of clusters, and only half effective for the next, then not at all. I kept taking them in the hope they would work, until I started getting stomach pains and painful reflux symptoms.

Reviewing this with my GP, she prescribed suppository Voltaren once per day. Abortive medications and oxygen.

I'm also on batchs vitamin D3 regime which has had decent results in at least reducing the severity of my CH. Currently in the start of a bout and waiting for the D3 regime to hopefully take effect again.

Posted in Can anyone recommend a good Dr? on 22 Oct, 2019 - 10:45 pm

Unsure if he can do emergencies but Dr Neil Griffiths in Liverpool is a CH aware neurologist who might be able to help?

Posted in Batch's anti-inflammatory regimen for CH on 06 May, 2018 - 6:59 pm

I'd like to add that I'm on this regime for around 10 days now, with supporting anti-inflammatory drugs until it has time to take effect, and have gone from having 2-3 attacks per day to 1 every few days at worst. I still have some shadow events which are managed effectively through the use of Naramig tablets.

I'm taking:

AM: 5000 IU D3, 2000mg fish oil, Centrum and roughly 400mg magnesium

PM: 5000 IU D3.

I'm having some trouble locking down Vit A & K, any suggestions on where to get those would be greatly appreciated.

Posted in Calcium Chanell Gene Recepptor Antgonists ---CGRP Antagonists on 06 Jul, 2017 - 12:18 pm

My grandmother suffered from hemicrania. She was treated with lithium well into her older life.
My headaches definitely have traits of clusters, set off by alcohol during cluster periods, strike around the same time during bouts etc.
The neck posture triggering headache is only a recent development.

Posted in Calcium Chanell Gene Recepptor Antgonists ---CGRP Antagonists on 05 Jul, 2017 - 12:35 pm

To be honest I am only going off what I have been diagnosed with from my Neurologist. I have to travel a significant distance and visits are expensive, but I shall endeavour to make another appointment to discuss this exchange with him.

Thanks for your insight, I appreciate it.

Posted in Calcium Chanell Gene Recepptor Antgonists ---CGRP Antagonists on 05 Jul, 2017 - 10:36 am

Nope, male. I believe I have had this discussion with you before.
27 y/o male with episodic clusters treated with indomethacin and sumitriptan.
However, my most recent bout of clusters the indomethacin treatment wasn't as effective as when first prescribed.
Also, I have noticed when having my neck tilted in a certain position for too long I.e, laying on a bed with arm supporting my head I can trigger a less painful cluster style headache.

How would a referral to Prof Goadsby's clinic be possible if he works in London, I am an Australian resident? Is it possible to get my Neurologist informed on the topic as well, is what I am asking.

Posted in Calcium Chanell Gene Recepptor Antgonists ---CGRP Antagonists on 29 Jun, 2017 - 7:29 am

I have not been prescribed oxygen. I use Indomethacin as a preventive during cluster periods and sumitriptan nasal spray (imigran) as an abortative.

Prof. Goadsby works out of London, am I reading that correctly? I am simply after the information so I can potentially inform my Neurologist if he is unaware of the developments being made in this field.

Posted in Calcium Chanell Gene Recepptor Antgonists ---CGRP Antagonists on 28 Jun, 2017 - 8:56 am

I would like to be able to forward this information on to my neurologist in Liverpool, is there somewhere I can collect more information?

Posted in Calcium Chanell Gene Recepptor Antgonists ---CGRP Antagonists on 18 May, 2017 - 12:39 pm

I will be watching this with eager anticipation.

Posted in Indocid anti-inflammatory regime on 03 Jan, 2017 - 8:56 pm

No problem.

No such suggestion as nerve blocks, I've only recently been diagnosed (within the last 3 months) so my Dr is just seeing how the current treatment regime works out, thus far it seems to be working well.

Nerve blocks may be needed in the future, but for now I'll maintain the treatment I'm on.

Thanks muchly for your counsel.

Posted in Indocid anti-inflammatory regime on 03 Jan, 2017 - 7:59 pm

Googling that gives information regarding Chronic Paroxysmal Hemicrania, is that what you're referring to?

The symptom list fits apart from the amount of events per day and the attack duration. It's unusual that I'll have any more than 1 attack per day, rarely 2. My headaches usually last 30 minutes to an hour and a half.

I bought my indomethachin in bulk, 2 packs of 100 per script fill. That with the nexium cost me around $20.

I've only used the term "cluster migraine" because that's what my neurologist wrote on my diagnosis to give to my employer. I've suffered migraines also and know they aren't the same. Just relaying information from a professional, as I am not one.

Posted in Indocid anti-inflammatory regime on 02 Jan, 2017 - 10:42 pm

Hi there.

Thus far the Indocid seems to be working. If I start taking it after I have a headache event, I don't have any re-occurence and don't have any for quite some time. That's taking it for between 3-5 days as I'm trying to avoid taking them for any longer than that.
My medical diagnosis is for "Cluster Migraine," I don't know if that's any different to cluster headache, but I'm sure you could shed some light on that.


Posted in Indocid anti-inflammatory regime on 14 Dec, 2016 - 6:35 pm

Hi all,

My neurologist has started me on a treatment of Indomethacin (brand name Indocid) for aborting my bouts of CH. He described it as an older style anti-inflammatory drug, and highly recommends it for aborting CH. So far, I'm 3 days pain free on the regime. Given during a bout I usually never get more than 1 pain free night, things look hopeful. I post this to a) spread the word for any fellow cluster heads who may be seeking new treatment and b) ask if anyone else has had success with this drug and any side effects on the treatment? My Dr told me they can damage the stomach lining and has given me Nexium to counter-act these effects.


Posted in The Alcohol Question. on 11 Dec, 2016 - 7:14 am

Hi Curly.

I've been a product of drinking culture since I was around 16. Up until late last year I'd drink moderately to heavily almost every weekend. I also used a lot of psychedelic drugs which seemed to keep my clusters at bay, or at least somewhat pacified which I'm guessing is allowed me to keep up my drinking habit. As for now, during a cluster period, I can't go near alcohol. Red wine is the most sure-fire trigger, even in non-cluster periods it can give me a shadow event. I don't drink anywhere near as often now, realising how hard it was being on my body and my wallet. I don't have much of a problem staying away from the booze, specially now my clusters are so much more intense, the thought of a potential trigger is terrifying, and not at all worth the one or two beers I crave from time to time. During non-cluster periods, I still enjoy a night on the drink with friends. I've just come out of a remission, right before holidays and Christmas so it looks like I'll be staying dry for the silly season.

Posted in Recent diagnosis on 10 Dec, 2016 - 7:00 pm

Hi Mark,

I second Kim's advice for visiting a neurologist. I got referred after a battery of tests also, and got a confirmed diagnosis of CH (or cluster migraine as my neurologist describes them). In terms of medication, I was prescribed maxalt wafers from my GP, which are effective in aborting CH for me, but the side effects are awful. Instant fatigue, anxiety and depression ensue and being essentially bed ridden and brain fogged for hours after using it. So I'd suggest using this with caution, but if it aborts CH, it might be the way to go. I have been prescribed imigran nasal spray from my neurologist, but am yet to try it. I've heard good things from other users on the forum though. In the end its about finding a solution that works for you, as some medications work for some and not for others. Being from the Newcastle area as I am, the choice of specialists is limited. I got referred to Dr. Blackie at the neurology department at John Hunter hospital and the wait time was 12 months, so I chose to visit Dr. Neil Griffith in Liverpool, and he is a wonderful, kind and understanding man who will take you very seriously if you present with CH symptoms. Well worth the travel.

Good luck with your journey.

Posted in Help with discussing medical diagnosis with GP on 06 Aug, 2016 - 9:42 am

Just to update this thread, the GP I've been seeing turned out to be a hero in plain clothes. After seeing him once about he headaches, having blood tests and eye tests, he declared I was in a state of physical health that to him, says I have a neurological problem, and he wrote me a letter to a neurologist. He also said if I have a preference, to walk back into the doctors office and he will change the referral to any neurologist I want! I nearly jumped out of my seat and hugged him.
To anyone who may be suffering undiagnosed in the Newcastle area, go and see a Dr. Piotr Michalski at Hamilton Medical Clinic. He's an excellent man and won't fuck you around.

Posted in Help with discussing medical diagnosis with GP on 20 Jul, 2016 - 9:14 pm

Thanks Dana,
I will start keeping a more rigid diary. My current GP is making me keep a diary relative to what I eat, but I'll keep one for each attack. He at least hasn't dismissed CH completely, but he said he wants to rule out any other pathologies, which is good.

I'm thankfully near enough to Sydney that if my local GP doesn't end up helping, I'll start contacting the listed specialists in the Sydney area.

Whatever is going on with me definitely not migraines, I can agree with you there. I've had a few of those in my life, and by comparison to CH, it's like a walk in the park.

I'll keep at it, thanks for your help.

Posted in Self diagnosis ?? on 20 Jul, 2016 - 12:11 pm

Hi Tesh,

Sorry to hear about your ailment. Everything Colin says above is important. There are serious dangers with taking matters into your own hands. I am not medically diagnosed, and whilst I feel that my attacks are CH, I am not ever going to say I am or going to take medications outside of a doctors orders that I am unsure about. I am in the process of going through medical diagnosis, having been shoved away from GP's for years.

The new GP I'm seeing let me tell my story, listened to what I had to say, didn't immediately try and diagnose, but is sending me for batteries of tests to disprove any other theories he has which could mimic cluster headaches. Considering there is no test or simple way of diagnosing CH, you have to cooperate and work with your GP to get sent down the right path.

I may yet find out my headaches are attributed to something else, but they ring every bell of CH and always have.

Posted in Help with discussing medical diagnosis with GP on 20 Jul, 2016 - 11:55 am

Feel free to move this thread if it's not in the right area.

Posted in Left or right ? on 20 Jul, 2016 - 10:53 am

Hi Mickyd,

Mine are unilateral, right side. From everything I've read, right side is more common than left, and bilateral is rare, but does occur.

Glad to hear you had such a long break, I hope you're blessed with another long remission again soon.

Take it easy.

Posted in Introducing myself on 20 Jul, 2016 - 9:35 am

Hi all.

I'm 26 years old, and from my best time lining I've been a CH suffered since my early 20's, maybe 4 years?

I'd always put it down to thinking that I was consistently dehydrated, and drinking 4 litres of water a day offered no relief.

I've been a recreational drug user since I was 19, and consistent use of psychedelics between the ages of 23-24 offered me two years of very small, low intensity clusters.

It's not viable to use recreational drugs as an escape from CH, not in the way I used to anyway, having a more stable career and relationship, let alone the drained and alienated feeling that it leaves you with.

I'm on the path of medical diagnosis, and any life experiences I can share to help other sufferers, I will.

So glad I found this forum, the last two years have been hell during clusters.

Posted in Help with discussing medical diagnosis with GP on 20 Jul, 2016 - 9:25 am

Hi there,

I've been a CH sufferer for a few years, having really only figured it out in the last two years. Unfortunately seeing my old GP resulted in being told I was suffering migraines and being pushed away continuously, I've never been medically diagnosed. Whilst it is possible it's another condition, I'm fairly convinced it's CH.

Any help with assisting my new GP, who is sending me for batteries of tests to disprove any other theories he may have, with a diagnosis of CH, given all other tests come back negative, would be greatly appreciated.

I live in Newcastle, NSW, so if there's any specialists etc I can try and get referred to, that would be excellent.


Posted in Article about research into hallucinogenic drugs. on 20 Jul, 2016 - 9:19 am

Hi Buzz,

I first heard of the psilocybin mushroom offering relief from CH from a documentary, Drugs Inc. Desperate to try it, but unable to ever come across psilocybin mushrooms easily, I finally got some early this year. One dose (recreational, as I can be inclined to enjoy such things) stopped a bout of clusters in its tracks. About two weeks ago, they've resurfaced, and a similar dose didn't stop this bout, but what I thought lessened their intensity.
Last night I re-dosed, in hope of stopping this bout altogether, and after I came down, I had the worst CH to date. There's specific methods for the dose used, the frequency, and from what I can tell the potency of the psilocybin in the mushrooms, but the original post rings true, I wish there was more sound science.
I'm going to persist with using them, as I've only just started the procedure of medical diagnosis having been shunned by doctors for years (my new GP is thankfully listening and going down the avenues).
I will keep you updated with my travels.