Why is there so few people on this forum

28 Mar, 2019 - 12:34 am

I am only new to this forum, been here 3 days now and joined because of the loneliness I feel while experiencing my CH which are now in their 48th day.....everyday at least one but sometimes three or 4 now and they are getting more painful.

But I am writing to ask why there are so few people on here and active?

Is it because CH are actually so rare? I have met only one person that had almost identical symptoms as me but he seemed to be able to control the pain much better than I do, byt he took meds and I don't as I never have been prescribed any by any doctors except Oxy's and Endonine which I would take 2 of each at the same time and they did nothing for the pain

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09 Apr, 2019 - 12:05 am

i think so few people are active because cluster headache is so rare
and people tend to be active only when they are in a bout.

as to management , you need a definitive diagnosis and treatment
by a neurologist.

regards kim

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10 Apr, 2019 - 12:10 am

Thanks for replying Kim.

I managed to battle through some more very uncomfortable nights or should say early mornings combined with a few of those the 'second you wake' bouts and few during the day while I was at work......and man were they painful.....not as bad as I had experienced in past years but still pretty high up on the Pain Richtor Scale.

After about day 60 I began to think that this would never end but all of sudden late last week I had 2 nights without an attack. The third night I did get one again but it wasnt as long nor as intense and although I carry a pretty decent headache with me all day each and every day I have been relatively pain free since Thursday last week..................got my fingers crossed they have gone, well at least for now.

I saw a neurologist a long time ago, probably 15 maybe 20 years and as I recall he didn't do anything for me except cost a lot of money and prescribe something that didn't help....have they improved and do they actually believe in cluster headaches? I didn't believe that there is any treatment and that we just have to suffer through the pain, the loneliness and through the sleep dep' all alone.

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16 May, 2019 - 9:30 am

Hi Naisy,

I personally took a while to join forum due to being generally a private person. But I want to find out as much as I can about this horrid beast

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16 May, 2019 - 9:30 am

Hi Naisy,

I personally took a while to join forum due to being generally a private person. But I want to find out as much as I can about this horrid beast

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16 May, 2019 - 12:38 pm

yes doctors do now recognize cluster headache,
and there are now a number of treatment options.

my suggestion is to see a neurologist to get a definitive diagnosis
and discuss treatment options.

kim

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23 May, 2019 - 6:06 pm

Hi Jojo,

How are you doing champ?
Still copping a hammering off those bastard headaches or getting a few PF days and or nights to help keep the sanity in tact....it's okay to want your privacy but these fuckers are hard to deal with on your own, particularly as no one can truly understand the pain level we must endure night after night, day after day the beast is relentless.
I have lived alone for extended periods of time and speak from my own experience; being alone with these CH can start to eat away at your sole, the sleep dep' takes it toll and dark thoughts can start to clutter up the space for rational thinking......so talking to other sufferers is good.
I've been PF since early April now, approximately 6 or 7 weeks and able to enjoy a bourbon and dry without fear of triggering the f'king things off........some days after work I knew I was going to get one any way, it was just a matter of exactly what time so I would say to myself 'stuff it' and get a nice ice cold can down then wait for the onslaught....lol
I found a another Face Book group that you might like to join as it is way more informative than whats on here. The people in the group are from all over the world (all 8500 of us) and have some different and quite interesting suggestions for busting as compared to traditional med's that from what I've read seem to have limited success with a minority of sufferers...
I wish you well and many PF nights........hang tough nd message me any time you like day or night as my sleep pattern is still up the shit....lol

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23 May, 2019 - 9:27 pm

Hey Naisy,

Your right, no one gets it. Think I'm going to start telling people I have Hortons Syndrome. (Not kidding).
Glad to hear you've had pain free weeks. I have been as of monday just gone, only a few days. Mine are very predictable except for shadow episodes. I shouldn't get hit again till august/sept.
Thankfully verapamil has reduced the pain. I do find though that despite that my mood is TERRIBLE! I originally put it down to the high level of pain. Currently on the hunt for some information as to the effect on the brain during a cycle. As of Monday gone my mood has completely lifted and I'm me again. There's got to be some chemical imbalance or something occurring.
Hope your get some decent sleep

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24 May, 2019 - 9:33 pm

That's great news....once they stop they stop! Maybe I might get 1 after a couple of days PF but that's usually the extent until somewhere between 10, 12 14 months until the next cycle.
.

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24 May, 2019 - 9:35 pm

What is Verapamil? I see quite a few people refer to it

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24 May, 2019 - 9:36 pm

It's a blood pressure medication. Doesn't work for everyone

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