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"Looking after yourself"

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#1 Wed, 19/03/2014 - 23:07
DavidH 7
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"Looking after yourself"

Does anyone pro-actively do anything about their health because of their Cluster Headaches (but outside of the usual medical responses to Cluster Headaches)?

Is there anything that is recommended and/or "Evidence based"?

(Question prompted by the vague thought that I feeling like I'm taking a hammering - mentally and physically - during a Cluster and should look after myself better, including looking after my heart health).

Thu, 20/03/2014 - 07:33
duetto
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davidh

I have tried with my diet, eliminated various food items one at a time for 3 months resulted in no difference.

but kept with soya milk instead of diary, just feel better without diary products. recently switched bread from fresh breads to german rye/sunflower bread giving up bread seems to be helping with hunger pains that i am plagued with, which i think are linked to my headaches.

my diet is generally fresh healthy food avoiding junk food and pre made supermarket meals, also avoid nitrate meats [sausages,bacon,pies,take aways, burgers etc]

tried eating several fresh sharon fruit each day [high in magnesium] no help either.

tried traditional chinese medicine and acupuncture they could not prevent clusters but the sessions very relaxing especially cupping on the nerve lines on the back.

despite all the above still get chronic clusters, and shadows.

used to keep fit but clusters and shadows killed that off, lost all motivation/mood to exercise.

will try anything ran out of ideas now.

Thu, 20/03/2014 - 09:19 (Reply to #2)
Colin Allen
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I don't think David is looking for tips on how to keep the beast at bay,rather coping strategies to combat the physical and mental impact of CH  on the body. A good diet is always a good starting point for general wellbeing,as is excercise.But be careful not to overdo excercise regimes,some people find vigorous excercise a trigger.

Try to enjoy your pain free time inbetween attacks,rather than sitting in frightened anticipation. I know that can be a difficult thing to do,but it's pointless playing Canute and trying to stem the tide.A positive mental attitude is always extremely helpful. Don't be frightened of the beast - he's just a bully who revels in the pain of others.

Thu, 20/03/2014 - 09:51
duetto
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colin thats the million dollar question, I do not think anyone has found that one. O2 &imigran jabs, also applying pressure at the side of my head helps on occasions when the pain is no so severe.

having ice cold drinks or strong mustard only gives temp relief for me of about 10-15 mins.

 

Thu, 20/03/2014 - 11:18
CBailey
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I wouldn't say any of the following thing have helped... but I stick to an almost vegan diet, and I get out of the house every day regardless of how I feel (my dog needs walking!) so I don't get that stuffy headache feeling too.

Arise and be all that you dreamed.

Thu, 20/03/2014 - 21:52
DavidH 7
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Thanks all.  As Colin picked up, I'm not looking for a miracle answer (although I can see how it could be read like that).  More, I feel like I've taken more of a battering with this episode than usual (more chest pain, more tiredness, more all round weariness) and I have a sense of *I should be a bit more healthy* inbetween episodes, really.  I think I struggle to believe that there are no lasting effects, too, given the pain levels. 

Fri, 21/03/2014 - 08:04
duetto
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The tiredness weariness is the constant  clusters wearing you down plus all the meds, I have this a lot. Then you get a rare cluster free day or two and your full of energy and everyone that is used to you being tired all the time think you are hyper or bipolar.

Sun, 23/03/2014 - 12:34 (Reply to #7)
CatherineM
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I totally agree the tiredness is the clusters wearing you down and depriving you of sleep so when you get a "free " time you go hyper or sleep to catch up.I also agree that trying to be healthy or "lookafteryourself" doesn't really make a difference to clusters you may be better in yourself but not cluster wise.Ican remember someone saying on the forum before it was breached that he could and did list an A to Z of things that could trigger clusters Cathy

Mon, 24/03/2014 - 22:13
DavidH 7
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Thanks for the responses.  I wasn't thinking about "looking after myself" as an attempt to make an overt difference to my cluster headaches - I'm sure if there were things that might make a difference, they'd be all over the site already.  More, I've felt that this episode has had more of an impact on my health than usual - the thing that triggered this is that I've had more chest pain (following Sumatriptan use) than usual.  I've had this checked out by my GP (via ECG) and it is coming up as fine but it did lead me to thinking that perhaps I should make more of an effort about my heart health inbetween episodes.  Even my diet goes a bit wonky during episodes (less motivated to cook healthily, prone to eating biscuits in the middle of the night etc).  I figure there are other things I could be doing that might make me more robust when it comes to the 8-12 weeks or so that I experience cluster headaches (every two years).

 

Tue, 25/03/2014 - 07:58
duetto
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"prone to eating biscuits in the middle of the night "

 

i get a carb craving during shadows or prior to clusters sometimes late evening/ bed time.

I think its cluster related, read on an american site once that the brain can only use carbs for its energy and during headache periods it uses a lot of carbs hence the craving.all

this reminds me of another point no seen mentioned, the brains transmitters that spark all the signals are coated in fat, and alcohol disrupts this fat causing drunkeness as the signals misfire, I wonder if the mystery of alcohol and clusters lies around the fat tipped transmitters in the brain causing the restlessness, clumsey and co ordination problems.

 

Fri, 04/04/2014 - 18:09
RichardW
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Last year I lost 2 stone and joined a rowing club to get fit as I had palpitations and some dizziness so lots of tests for arrythmia etc..

The hypothalamus is responsible for heart problems as well as cluster headaches as it is the main electrical clocking mechanism. I get the regular Spring and Autumn ECH and occasionally an extra in January for some reason.

Since getting lighter and fitter I have managed the pain better and can survive the day after a long night. Also one useful tip from this forum is to raise heart rate when taking a triptans. I jog on the spot in bedroom at 2am to the amusement of my wife but I can abort cluster in 10 mins instead of 20-40.

 

 

 

 

 

Fri, 04/04/2014 - 22:48 (Reply to #11)
Brian C
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Richard, thanks for the information, and advice, I think i will give it a go

Thanks Again 

 

Brian c

Mon, 07/04/2014 - 10:46
Boomshakalacka
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Hello Folks,

 

I am a newbie CH sufferer and the regularity of my headaches (8.30pm and 03.30 am!) is causing tiredness and a complete breakdown of my career (Chemistry Teacher) and Social life.

However, to keep the psychological beasts at bay I do try a few things.... there is no evidence to back up the effective nature of these activities on CH, but, and I think this is the important bit, I do feel I get some benefit from them in the form of relaxation, better posture and so on.

I have taken up:

Yoga - Relaxation and Posture benefits.

Pilates for Men Smile - Again, relaxation and posture.

Massage - My gf is a Physio so I have unlimited access to this wonderful relaxatiopn technique! Smile

Osteopath - For relaxation and stress relief only - I am sceptical on any other benefit.

Cardio vasular workouts - 3 or 4 times a week to get the endorphins going!

Sunshine and Fresh air as often as possible - Just as a sanity break! Smile

 

These things probably have no impact upon my attacks of CH, but the ancilliary benefits are keeping me sane and pretty healthy! Would especially recomend Yoga, Massage and Sunshine and fresh air!

Good luck!

Chris

 

Mon, 07/04/2014 - 13:16
Mike
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Chris, welcome. You're probably correct, relaxation techniques are unlikely to help but not a bad idea to keep them up as a sort of divertion.

Not hard to see what you backed in The National,

regards

Mike

 
 
 
Chairman OUCH UK

Mon, 07/04/2014 - 16:22 (Reply to #14)
Boomshakalacka
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Indeed Mike... But didn't earn me any cash! Sad

However... Balshazar King did earn me £20 in the family sweepstake! Biggrin

 

Wed, 09/04/2014 - 19:53
Val
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Hi Chris

Anything that will improve your wellbeing is all to the good for a CH sufferer, means when the beast comes along we are better able to cope.

I have weight issues - being 5ft and a postage stamp doesn't help - but I constantly struggle to keep my weight down and I'm sure its to do with the appetites/cravings triggered by the overactivity of the hypothalamus.  I did once get down to a sylph like 9 stone (remember the British Museum, Colin?', but hover now around the 10.5 stone mark.

I walk my dog most days, and I'm going to pilates classes soon. I have found, in common with many other sufferers that violent exercise that raises the body temperature will set off a cluster attack for me, that's why when I did the London 10k I walked it!

Val. 8)

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