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#1 Tue, 25/08/2020 - 14:27
Last seen: 3 years 3 weeks ago
Joined: 02/03/2019 - 12:15

Comparison Questions For You?

Afternoon All,

I just wanted to go through a few of my signs and symptoms i get from episodic cluster headaches and see if people get the same sorts of things. Some of my signs and symptoms i've not heard of others having.

From the age of approximatley 12-14 i suffered really badly from headaches in school nearly every day for a few months at a time. These headaches would be so intense they would sometimes make me vomit. At times my parents would have to pick me up from school, and we just assumed it was migraines and i wasnt drinking enough. This period of headaches then seemed to stop for a few years and they returned when i was around 20 years old.

Have others experienced cluster headaches from such an early age. Have others had such an extensive gap?

These new headaches that started with me when i was approx. 20 years old have stuck with me until this day (I'm now 28). I suffer from Episodic CH meaning i get my headaches from October - Feb (give or take a few weeks) every year. Each headache is extremely intense in pain behind my right eye and can last anywhere between 20-90mins. Usually i get 2 a day, but my worst was 6 in a single day a couple of years ago.

Anybody else experience their bout around this time of year?

After seeing numerous GP's and Nueorolgists, i was diagnosed and was onto a course of verapamil. This didnt seem to work. I tried sumatriptan nasal spray. Didnt work. Tried sumatriptan self injection. Didnt work. 

I'm now thankfully on oxygen which can be a huge pain relief 75% of the time but obviously very impractical.

October 2018 i decided to try Reflexology, but this didnt work. 

October 2019 i decided to try Accupuncture and to my amazement by December my headaches were reducing and December 11th was my last headache. To my relief i had found a cure..... so i thought.

I'm now sitting here August 2020 and they have come back full force. I have started my accupuncture again, but i'm wondering if my bout has just shifted to earlier in the year. Back in december i thought the accupuncture was working but actually my season had just finnished??

Are they starting and finishing earlier in the year now? Anyone experienced this? 

I have been trying to find a pattern of triggers over the last few years, but am failing miserably. However any time i go out for a meal with my partner during a headache "season" i get one come on, and i loose my appitite and ruin the evening. Sometimes i think, is it due to resteraunts being hot and stuffy. Or do i over induldge, get myself into a hot fluster and then this is a trigger?

Anybody experienced anything similar?

Finally, whenever i have a cluster headache i uncontrollably yawn nearly every minute or 2. I read somewhere that when we have an attack it attacks the part of the brain that makes us yawn. Sometimes i can be tired and can sleep a headache off after a quick 30 minute nap. But sometimes i just cannot stop yawning whilst having a headache.

Random or common?

I have been using an app called My Cluster Headaches and it is a useful basic tool to keep track of my potential patterns (times of day, frequency, treatment that works etc).

Any help or answers to the questions above would be greatly appreciated. Thanks Smile

Mon, 31/08/2020 - 21:22
sjeastwood's picture
Last seen: 2 years 4 months ago
Joined: 26/08/2020 - 16:52

Hi Alec, while my headaches have been consistent for the past 7 years (since they started) I have found that my February CHs have disappeared entirely these last 2 years, and my October CHs have moved forward to August.  I have also noted that they have changed form - they have been occurring at an increased frequency, but are of a lesser severity these past 2 years.  I am also having a foggy after-effect, but I think that's just caused by having them every day back to back.  My headaches are predominantly on the left of my head, and I get the pupil, nasal and flushed left-hand side of the face &c.; none of that has changed.  My headaches didn't start until I was 35, and are usually one a day, but perhaps 2 a day 1/3 of the time.  I put some other info in my 'hello' post just now, but otherwise I hope that's helpful.  Steve.

Wed, 02/09/2020 - 00:00
Robert Kayes
Last seen: 3 years 5 months ago
Joined: 18/08/2020 - 22:32

Hello alec92, while reading the first part of your story, I thought Wow! im not alone!!!

I live in the south-west, and in 1995 I was 13 years old. I watched the total solar eclipse that year using only my right eye and covering my left, being young and stupid! anyway a few months after and i start to get really bad pain in my right eye, tempel would tense up on the right side and id sweat all over and sometimes be sick, i would couch down holding my head and rock until it stopped!

these would happen 4-5 times a day for months, then would stop for months, sometimes years. But every time id think id seen the last of them, BANG...            i only ever had these eye stabbing attacks in the day, and all the doctors told me they were migrines. i had eye test done and all sorts of other test. but just migrines!!!

then in 2008 i had a head/brain injury, when i got out of hospital, about 16months had passed with no (SO CALLED) migrines, and then, (bad memory) one night while home alone, about 03:45am im woken up with the same pain ive been having before, in the same places, (eye,temple right side) only worse, alot worse! because of my recent head injury, i had a good and rapid nero team on hand, but even so, it still took 4 years to get a diagnosis (2013) as soon as they said thats what i have, they sorted my oxygen and left me to sort the rest out with my doctors!... 

i tried using an app but i cudnt get on with it as i wasnt always around my phone when i had an attack so some attacks would go un noted or mis timed. so after a few failed cycle attemps, i decided to get an A5 lined booked and use that as my CHdiary.

im in cycle at the moment, it started on 28th june so hopefully coming to the end.  i'll say that lighty though as this is the strangest cycle ive ever had!   normally you can set your watch by them, but ive not had any consistancy to these, 3 attacks at night 4in the day then 1 the next night and 5 in day 0 for the next 2 days and nights then 6 in the night 0 during the day 2 at night 3 in day and so on....... Grrrrrrr

anyway, as scary as it is, i should try to get some sleep, hope the beast leaves me alone tonight!

pain free wishes to you

Mon, 14/09/2020 - 10:46
Last seen: 2 days 5 hours ago
Joined: 21/03/2012 - 15:16

Hi Alec.

Cluster headache can start at any age, we've known sufferers as young as 1 year old  and as old as 91!  It is no respecter of age.

Yes, there can be long gaps between bouts of years lengths. 

The majority of episodic sufferers have three peak times of the year for going into cycle,  late March, early April, late October and the end of December.  At those times of the year, we change clocks and the light levels change and CH does not like it when seasons change or the drop in natural light levels.   But bouts can occur at time and start times differ from bout to bout.  Cluster headache is the closest thing you will get  to a designer disease, because no two sufferers have the same cycles, attack times, treatments that work, autonomic symptoms etc.  The only common factor is the appalling pain. 

Attacks can be triggered by smells, such as perfume, diesel, petrol, paint, cleaning fluids.  

Extremes of environmental temperature

alcohol, [and watch what other meds you take, sometimes they contain small amounts of alcohol.  It is also in some hand sanitisers].

Increase in body temperature, thru exercise, or fever.

No foods or drinks, except for alcohol. 

The confusion over whether the acupuncture had worked for you could be, as you yourself said, it coincided with the end of you bout.  But there is no treatment that will cure CH, however, we are so desperate to get rid of our pain, when we try a new treatment we manage to convince our brains that it is working, but subsequent treatments have no effect.  This is called the placebo effect.  I will say, though that anything that could relax you is a good thing, but you might end up with a large hole in your wallet! 

Yawning is one of the early signs of a CH attack; your brain needs oxygen so you yawn!  And what do we do, use oxygen to kill our pain so the brain gets the message there is enough oxygen and no need to expand those blood vessels and put the trigeminal nerve under hugh pressure and cause our pain!  

I hope that answers all your questions?  



Sat, 10/10/2020 - 03:03
briggsmarkj@hotmail.co.uk's picture
Last seen: 3 years 6 months ago
Joined: 10/10/2020 - 02:28

Hi all. So I've had the joy of cluster headaches for the past.. 20 years at a guess. Thankfully episodic, or I don't think I'd be writing this. There is a lot of bad press regarding verapamil, and I personally avoided it for the first 10 years or so of agony. Was lucky enough to have a gp that knew what cluster headaches were so had sumatriptan injections. However, I found myself overdosing on them to the point it got scary. At that point decided to try verapamil. I now take verapamil in varying dose year round. And... Get one or two headaches a year. Which to me is a bloody miracle. I managed to ruin 2 relationships in the first 10 years. Its just because neither them or me could deal with it and the stress it caused. On a positive am now happy and living a good life. So don't give up, it might feel like you want to at times but it can get better. There was a lot of times I never thought it would and probably like a lot of you had some very bad thoughts. If anyone wants to chat, about anything, feel free to message. Mostly, I wish you all well and good luck.

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