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Danita Gammon

(Member)
From: St. Catharines
4 total posts
Not currently suffering :D
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Hello everyone. I feel a little better already, just knowing that there will be people here that understand. I do not know any cluster headache sufferers, and I don't think you can know one until you have one. Glad to be in your company, and sorry that we had to meet this way

Danita Gammon

(Member)
From: St. Catharines
4 total posts
Not currently suffering :D
Hi everyone. I see I'm not alone. Sorry we have to meet this way. I am looking forward to chatting with others that understand.

Mel

(Member)
From:
5 total posts
Currently suffering :(
Hi All,
I've had this thing since my second child was born in 1990. Since then I've had it roughly every 4 years, it goes for 6-8 weeks and the headaches are every day at roughly the same time.
I suppose I should be grateful that they go away for years at a time..
I'm so glad I found this site - people just just don't get how bad these headaches are!
So many times I have just had to rock back and forth holding a washer on my face (always the left side) and cry and also lots of times vomit from the pain.
Someone suggested I get one of those headache sticks that smell like lavender - haha as if that's gonna help!
After so many years experience I've found taking a zomig as soon as I feel it coming on - the first twinge in my temple - the zomig is like magic. I honestly don't care how much it costs or what the side effects -are - I'm desperate..
It's such a weird thing - why does it happen??
Anyway thanks Roger for starting this website. - I've got them again at the moment, that's why I searched. Oh well only another 7 or so weeks to go (hopefully).
Regards
Mel

Belle

(Member)
From: Forest Hill
12 total posts
Not currently suffering :D
Hello CH's smile
How is everyone doing? I haven't been in touch since the last cycle, almost 2 years ago. I was cruising along in life, planning my wedding, loving every minute of everything! Unfortunately, I made the mistake of putting CH completely out of my mind! Totally unprepared, now it's back and I'm surrounded by medicine packets, oxygen tank by my side! Going into the second week now wondering how long it will last this time. Trying to remain super positive, hence all the smilies smile Truth is, I feel like death warmed up, waiting for the next attack smile

Love to hear how you are all doing smile

Belle

Belle

(Member)
From: Forest Hill
12 total posts
Not currently suffering :D
Hello CH's smile
How is everyone doing? I haven't been in touch since the last cycle, almost 2 years ago. I was cruising along in life, planning my wedding, loving every minute of everything! Unfortunately, I made the mistake of putting CH completely out of my mind! Totally unprepared, now it's back and I'm surrounded by medicine packets, oxygen tank by my side! Going into the second week now wondering how long it will last this time. Trying to remain super positive, hence all the smilies smile Truth is, I feel like death warmed up, waiting for the next attack smile

Love to hear how you are all doing smile

Belle

Bru

(Member)
From: Ballarat
37 total posts
Not currently suffering :D
I'm 50 now and the body's feeling it, but just wondering if one of the upsides of getting older is growing out of my cluster headaches? I've been dealing with them now since my early 20's but it would be so nice to know that at some time in the future I might just grow out of them.

I'd really like to know but there does't seem to be any information I can find on this. Maybe no research has been done. Typically we only think about CH's when we're suffering, and then happily forget about them when they're passed. So I suppose it would be natural for someone who grew out of CH's not to stay involved and therefore not show up in any research.

Does anyone have any experience about this or info or links.

Cheers,
Bruce

Bru

(Member)
From: Ballarat
37 total posts
Not currently suffering :D
I'm 50 now and the body's feeling it, but just wondering if one of the upsides of getting older is growing out of my cluster headaches? I've been dealing with them now since my early 20's but it would be so nice to know that at some time in the future I might just grow out of them.

I'd really like to know but there does't seem to be any information I can find on this. Maybe no research has been done. Typically we only think about CH's when we're suffering and then happily forget about them when they're passed, so I suppose it would be natural for someone who grew out of CH's not to stay involved and therefore not show up in any research.

Does anyone have any experience about this or info or links.

Cheers,
Bruce

Roger

(Admin/Moderator)
From: Latrobe
249 total posts
Not currently suffering :D
test

Overit-316B187F80

(Member)
From:
1 total posts
Currently suffering :(
Ha I been getting these headache at 5am 9:30am 4:30pm and 11pm. 4 a day and I have knocked my self out and last night I blacked out and ended up in hospital I need some answers cause I can't do this any more. The last time I had this I was 21 now I'm 34

Kim

(Member)
From: Victoria Park
93 total posts
Not currently suffering :D
OK I AM A SMOKER.

every country in the world, except Australia, to the best of my knowledge,
supplies oxygen ( under their medicare system ) to those that require it for medical reasons weather they smoke or not.

according to the charter of human rights, in force in most developed countries,
it is discriminatory and a violation of of the charter of rights. to not supply oxygen to
those that have a medical reason for it., weather they smoke or not.

under the Australian Charter of Health Care Rights , i have the Rights to
access services to address my healthcare needs,

yet i can not get access to oxygen,(through medicare) if i continue to smoke.

comments welcome, but please know i am the son of a fireman, and i am
fully aware of all fire risks associated with oxygen use.

kim

Webbie

(Member)
From: Miranda
2 total posts
Not currently suffering :D
Hi Everyone.

I was diagnosed with CH over 11 years ago. I suffer periodically, with 2-3 cycles per year, lasting between 6-13 weeks at a time. Basically I suffer for 6 months of the year.

I've been taking Isoptin since I was diagnosed by a neurologist, which is a blocker and is supposed to reduce the chances of CH's occurring but I really don't think it makes much difference. I've also tried oxygen therapy which was a bit hit and miss. About 4 years ago my GP suggested I try Imigran so I started using the Nasal Sprays, 25mg taken at the onset of the CH. My experience with Imigran Nasal sprays was that it reduced the attack by half the duration, so even though it didn't remove the pain, at least it helped reduce the length of the attack. Nothing else really helped so I continued with this method until about a year ago, when I went to fill my script and the Imigran Nasal Sprays were all out of stock from the Suppliers, so nowhere in Sydney had any of these and the lead time for supply was approximately 2 months .... I nearly died.... The fear and panic on my face led the Pharmacist to do some further research and suggested I take the Imigran Tablets as a replacement but I would need to get another script and they would have to be ordered in. My fear was that from what I had read, the Imigran Tablets would take twice as long to work and there would be no effect .... so fear in my back pocket, I went back to my GP and asked for a script for the Imigran Tablets, which there are 2 types, one that is standard and one that has a fast disintegrate, which was the one provided to me.

My Pharmacist had ordered them in so I was able to get the Tablets the very next day. To break down my cycle pattern, I was getting 4 x CH's a night, 1 at 9.30pm, 1 at 11.30pm, 1 at 2.00pm and 1 at 7.30am. For the first 3-4 days, I was taking the Imigran Tablets at the onset of the CH attack and the tablets really didn't do anything, which is what I expected and my heart sank, then .... the next day I took the Imigran Tablet at 9.15pm, slightly earlier than necessary and "Before the CH was due to start" as I was worried I wouldn't be able to take it on time and ... the CH attack was half as intense as it normally had been and only lasted for about 20 minutes. This got me thinking, so the next CH attack that was due, I took the Tablet half an hour before the CH attack, so at 11.00pm, and same again, with even less pain. So, the next time, I took the Tablet an hour before the CH attack was due and ... (drumroll please ...) the CH attack didn't even happen !!! It didn't even register at all, no pain, nothing ... So, just to make sure I didn't fluke it, I then repeated this method, exactly 1 hour prior to when the CH attack was due to hit and guess what ... it worked again, the CH attack did not come in !!!

I have been doing this now for the last 12 months, every time the cycle starts I go up to my GP, get a "Personal Script" for Imigran FDT Tablets 50mg (Sumatriptan Fast Disintegrate) - There are 4 Tablets in each packet, so I ask for 6 packets at a time with 4 Repeats. One script will last me for one week and costs $90 for all 6 packets. You may need to speak to your Pharmacist about the pricing as I think my Pharmacist is practically giving them to me at cost because I'm a good customer smile I know its a bit expensive, but its the only thing that has been working for me, so I highly recommend if you can afford to do this, please give it a try.

This is not a cure, but it is definitely how I manage to cope with the CH attacks. It's all about timing !!! Please note that this only works if you know exactly when the CH is due to hit to the hour/half hour, which if you are like me, I set my alarm to when my CH's are due to hit and I usually can work it out within the first few days of the cycle starting, and, if another CH pops in just to keep you on your toes, then add that one into your schedule also. Take the Tablet an hour before the CH attack and hopefully you will get the same result I do, which is a means to manage the cycle with limited or incredibly less pain than I have ever been able to do before.

To then come off the tablets, when you are willing to risk it, and when your body hopefully gives you indications that the cycle may have stopped, don't take the tablet and hopefully the CH attack wont happen ... If it does come in, then unfortunately you may have to suffer through that one CH attack, but then go back to taking the tablets until you are willing to risk it again.

This is the only thing that has been working for me and I really hope that this might help just one person out there.

Nat
smile

Gaz

(Member)
From: Carss Park
11 total posts
Not currently suffering :D
It's been 5 years without an attack, almost long enough to get complacent - but not really, and here they are again. They hit about 2 weeks ago just in time for a family holiday.

I used to get them twice a year, every year through my 20s and early 30s. I am now about to turn 40 and they have returned but the pattern has changed. Not getting them daily during this cluster and the severity is different each time - sometimes "mild" and sometimes drill into your skull, smash your head against the wall intense.

While I prefer not getting the 10/10 pain each time, the random nature of this attack almost makes me more anxious about each day and what level of CH it will bring.

Has anyone had a similar experience to this?

syss

(Member)
From: Mumbai
2 total posts
Not currently suffering :D
can anyone come up with solution?

solarcost

(Member)
From: perth
1 total posts
Not currently suffering :D
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