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Another newbie to the site but an old sufferer

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#1 Sun, 15/02/2015 - 10:49
mattgod69
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Last seen: 3 years 11 months ago
Joined: 12/02/2015 - 09:02

Another newbie to the site but an old sufferer

Hi everyone

I have been suffering from cluster headaches all my life although (i have vivid memories of getting daily headaches after school at the same time and just having to get through them with no help or medicine). I was only diagnosed as such (with CH) about five years ago.  Up until then i was sent away and told to take headache tablets. ... great eh, we know how good they are! Lol

I suppose I am one of the more fortunate ones,  I get bouts of two to three weeks with two to three a day but i do get gaps the last one was two years.   During the bouts the head is always there a bit in the background just waiting to come out in full during a bout! My triggers are heat and atmosphere change.

I have, like many people probably, , tried many different tablets, none of which really work for me.   The only thing that seems to work is the nasal spray. ... Although this is not great and last night did not seem to work.  When I Have a head I try ti eat ice and chew it on one side of the mouth.... has anyone else tried this?  This does seem to help a little although it might just be the brain freeze!  Lol

I am wondering if there is any more effective treatments that I can try as like everyone I guess, when in a bout it takes over your life completely.

Many thanks for reading this and thank you in advance for any comments or advice. 

Matt

Sun, 15/02/2015 - 12:02
oxfordgarage
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Last seen: 6 years 3 months ago
Joined: 29/01/2015 - 18:18

Hi Matt I have had ch for over thirty years and am episodic so get them same time for about 2 months every day ! I am in my 7th week of ch at the moment. I have had all the treatments ect as you n nothing works with the exception of the imigran injections which I save for the bad ones !! You did not mention oxygen ? This is a godsend for most ch sufferes to abort a ch attack and prob the safest treatment you must speak to your doctor and get oxygen ! There is more on this site relating to oxygen have a read and good luck !

Sun, 15/02/2015 - 12:26 (Reply to #2)
mattgod69
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Last seen: 3 years 11 months ago
Joined: 12/02/2015 - 09:02

Hi Oxfordgarage

Many thanks for the message.  Sorry to hear you have been suffering for seven weeks.  I am in my third week now.

I have not tried Oxygen, but i do find that being outside in fresh air helps greaty..... oxygen... that explans it!! doh!  I have been reading about it this morning.

I am fnding that the nasal sprays are not so effective recently.  I am going to call my doctor tomorrow to see if injections might be better!?

I have been a bit rubbish out this in the past., in that i have just lived with it during bouts and then forgotten about it when they go.  Not so now though, i have joined this site and will be more aware in the future.

I hope you feel better soon.

Matt

 
 

Sun, 15/02/2015 - 21:41
oxfordgarage
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Last seen: 6 years 3 months ago
Joined: 29/01/2015 - 18:18

You too Matt injections are faster to work and you must insist your doctor give you oxygen at home with hi flow non breathable mask it can abort an attack in 10 minutes and help prevent shadow headaches ! Hope your ch passes very soon mate keep up the faith ! 

Mon, 16/02/2015 - 12:15
Val
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Last seen: 4 days 20 hours ago
Joined: 21/03/2012 - 15:16

Hello Matt and welcome to OUCH

Your story sounds all to familiar to us - but glad you now have a formal diagnosis.   You don't say if you have tried high flow oxygen to abort attacks and you don't mention the sumatriptan injections, they work much faster than the nasal sprays and are the best treatment for CH attacks.  Why not call our helpline, leave your name and number and one of our volunteers will call you back, you can discuss treatments, preventives and how to get oxygen much quicker than messaging back and forth on the forum. 

01646 651979

Val;)

 

Fri, 27/02/2015 - 12:30
Cracked Egg
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Last seen: 6 years 3 months ago
Joined: 27/02/2015 - 12:03

Hi Matt, I too have recently been diagnised after thinking i had migraines for the last 40 years (or maybe they've developed). My escape from the restlessness is a hot shower. I sit in the bottom of the bath and the hot stream on my head. It mostly works for me after 20 to 40 minutes and the time passes easier. I'm looking forward to proper medication at last but the shower has always been able to take the edge off. I hope this helps someone. Good luck to you all

Sun, 22/03/2015 - 11:47
paul
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Last seen: 2 months 20 hours ago
Joined: 31/10/2014 - 20:02

hello matt

heat also triggers my clusters and find that standing outside in winter barefoot,or standing on ice packs any other time reduces the pain very fast,i will try chewing ice as i get alot of pain in the jaw and phantom tooth ache in back three teeth

thx

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