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Please put me straight! Fact or fiction?

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#1 Thu, 13/11/2014 - 16:00
DanL
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Please put me straight! Fact or fiction?

Hi all,

I only found this site this week and have suffered with CH for 14/15 yrs. During this time I have been prescribed certain medication and avoided certain things. Any help on explaining whether or not the following are correct/the right thing to do would be much appreciated!

- I have been taking Propanalol hydrochloride for 14 years. Is this actually doing anything other than making me constantly tired?

- A disturbed sleep pattern can trigger CH?

- Aspartame is a trigger. After suffering a major attack after a diet coke 10 years ago I have avoided all aspartame containing drinks. (Not  that this is a bad thing.. nasty chemical!)

- Stress/anxiety/ thinking about cluster headaches can trigger them - is there a psychosomatic element?

I would be interested to hear what other CH sufferers find to be triggers (or if there even are triggers, maybe just coincidence?) and any non medicinal alternatives which help.

 

DL

Thu, 13/11/2014 - 17:03
Mr Git
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Cue Peter's much loved list.....haven't seen it for a while and always good for a laugh :bigsmile:

It's so long now that the latest entry should be....."Reading Peter's trigger list" :bigsmile:

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Thu, 13/11/2014 - 17:24
Val
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Hi Dan

As Mr Git puts it (;-0) there are many triggers, but by far the biggest one is alcohol in any form, and that includes its inclusion in certain medications and antiseptic wipes.  The coke thing may have been the caffeine element, as well as the aspartame and sleep was thought to be a trigger, but there is now a new school of thought which says that its not REM sleep that triggers an attack, but a drop in blood sugar levels which occurs at the same time as REM sleep.  So keeping your blood sugar levels steady (not high!) is a help.  Stress is not usually a trigger factor in CH, but it can add to things if you are having a very bad cycle.  Some sufferers have found a type of CBT to be helpful.  As always our personal triggers all differ.  with me its diesel and petrol fumes, extremes of cold, and extreme fluctuations in body temp [so I go on regular paracetamol to stabilise my temperature when I have a dose of the lurgi.]  As you are new to all this Dan, you will find that you will learn what your triggers are and avoid them, similarly you will find what treatments what work best for you.  Someone once said that CH is so individual in each persons' reaction to it that it is the closest you will get to a designer disease.   Keep asking questions though, that's the way to learn.  Mr Git how are you doing?   Nice to see you lurking again!

Val;)

Thu, 13/11/2014 - 19:14
Phil
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- I struggle with the sugar-level concept.

I usually eat once a day, high sugar and caffeine levels in my coffee. My sugar levels peek and dip throughout the day. After 30+ years of episodal, there is no pattern for me other than REM sleep.

Do we have a link to this new school of thought? (Supposedly by Prof. Nesbitt, but the only quote I've found is from OUCH on Facebook, stating the contrary.)

-Usually it's verapamil for CH, not Propanalol hydrochloride. I'm sure a Trustee will pop some more useful information up.

-I've never consumed anything labelled 'diet' or 'sugar free' so I can't comment on aspartame. :bigsmile:

 

_________________________________________________________________________ Yeah I know, my coat's already on.

Thu, 13/11/2014 - 19:33
Mr Git
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Val, you know I never lurk, I monitor from the shadows ;)

Conclusions so far....the jury is still out.  Would I rather 8 attacks per day (and only able to inject 2) for 3 months followed by 1 year off....or 1 attack per day at 0015 hrs (the midnight red-eye) every day here on in. Unfortunately for me, the latter comes with the permanent threat of an attack 24/7, which leaves me permanently on my guard.  I accidently walk into trigger zones e.g. chemical or alcohol smells and turn and run like hell!

My conclusion so far is that I'd rather be ECH and have 1 year of comparative freedom (I never really drop my guard).  However, that's easy to say now.  Put me at the 4 week stage of a 3 month bout getting hit 8 times a day and barely able to decide which 2 to treat, with Jane on the phone to Mike constantly begging for advice and I suspect my response might be different.

Obviously, I have tried to manage the midnight red-eye with the Sumatriptan Tablet strategy (Mike's genius idea) and it did work for a surprisingly long period without developing other issues.  However, as we all know, despite your signature line Val, the Beast has to win, so after many months problems developed so for now I'm back to injections and demand valve.

Apologies for hijacking your thread Dan.  In answer to your question; alcohol, excessive temperature change, excessive heat, overseas call centres, chemical smells and eye strain from reading Peter's famous trigger list.

Back into the shadows

Sean ;)

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Fri, 14/11/2014 - 00:25
Phil
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Ironically Sean, I'm in bout at the mo:
This week has been 7 attacks a day on average, with approximately 2 to 3 hours total broken sleep, only able to abort 2, so not injecting 'til I hit kip 8.
Just wanted to share. Wink

(Back to the thread)

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Fri, 14/11/2014 - 08:23
Mr Git
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Hang on in there Phil, I hope the finish line is in sight.

Have you found that the Demand Valve has made a significant difference to this particular plight?  I neglected to mention that when things got to their very worst in my case I had a GONB, and I was one of the fortunate ones in that it worked on several occasions.

All you can do is maintain a sense of humour, talking of which we all miss your dancing leprechaun, could it not make it onto the new forum??

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Fri, 14/11/2014 - 08:39
Mr Git
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Oh and Mrs Git would like to know who this Chinaman is?  Wun Hung Lo??

                                                             ^

                                                            ;)

Sorry Dan, back to your thread......

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Fri, 14/11/2014 - 09:25
duetto
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Aspartame is bad news all round for the brain. Its was on a doc on tv no long ago pilots are told not to consume food/drinks containing it for so many hours before flying

 

http://www.sweetpoison.com/aspartame-side-effects.html

Sat, 15/11/2014 - 06:48
Phil
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Just nipping away from the thread's main theme for a sec.
(Really sorry Dan. Angel )

I don't have O2, intimidating the doctors for sumatriptan
is my limit; I'd have to break fingers to get a script for oxygen
out of their hands.
(Hmmm...tempting.)

The leprechaun gif isn't compatible with the new forum,
and I haven't yet found anything close.
As for my sense if humour, it's as annoying and twisted as ever.

Anyway back to the thread. Again.

CH is linked to sleep in a few ways. REM sleep (or no sweets)
seems to be a trigger, and laying down. A daily routine seems
important for some sufferers, so a disturbed sleep pattern
is kind of a combination of both?

_________________________________________________________________________ Yeah I know, my coat's already on.

Sat, 15/11/2014 - 08:46
Mr Git
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Blimey Phil, facing 7 a day without O2, you must be tougher than me!

When in a similar scenario standard non-rebreather at 15 L/min helped, but not much.  When I switched to Demand Valve the improvement was vast.  It turned what was for me an impossible situation into something which was just about viable.

With regard to sleep, in order to finally get some I used to either have a GONB or exercise careful use of the Sumatriptan tablet.

Could we mount a posse to collectively come and hit your GP over the head with a copy of the BNF, together with one of Mike's carefully worded letters reversing him or her into a corner |( Val would look great in a Cowboy hat! :O

Shame about the leprechaun :(

Keep smiling Phil :)

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Sat, 15/11/2014 - 09:24 (Reply to #11)
Val
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I was generalising regarding verapamil.  Verapamil is a calcium channel blocker which prevents calcium build up in blood vessels and lowers blood pressure; propranolol is a beta blocker which is used in the treatment of hypertension, migraine, anxiety and a whole list of other conditions.  However, propranalol does not work in CH.  Verapamil does, although the reasons why are not yet known. What we do know is verapamil works for about 80% of CH sufferers, and that it has to be the standard BP version of the drug and not the slow or modified release version.  A study into using verapamil in CH is shortly starting I think at Queen Square, as soon as we have the details they will be posted here.

Regarding the drop in blood sugar levels, this has been posited by Dr Giorgio Lambru, headache specialist neurologist at St Thomas' Hospital.  In tests on CH sufferers, researchers noted that at the same time as REM sleep occurred, there was a concomitant drop in blood sugar levels.  This has not yet been reported in the literature as the study was for REM sleep and not blood sugar levels, so watch this space for further info on that point.  Eating once a day is perhaps not good for maintaining a steady blood sugar level, but hey I'm not a doctor.;)

Aspartame is present in other foods besides diet foods and is present in drugs such as Zomig and Maxalt, both used in CH.

I'm sorry I'm not a trustee, but I have been a helpline volunteer for 12  years and administrator of the charity for 4 years.  The advice OUCH gives is with the rider that we are not doctors and cannot diagnose or prescribe, but we do pass on information from our own experiences and that of other sufferers that may be of use to new sufferers and give some hope to those who are struggling.

Val.

Sat, 15/11/2014 - 12:18 (Reply to #12)
pc
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As a C-CH I want to endorse Val's comments regarding Verapamil and Propranalol.  Verapamil is working for me having taken Propranalol on the journey for a medication to help with CH.

Pat

pc

Sat, 15/11/2014 - 15:23
Phil
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Although, as you say, not doctors, OUCH has a direct link from the NHS website and it's endorsed by Prof. Goadsby (patron; quote "expert").
With first-hand experience and obviously, a vested interest in all aspects of the condition, only a fool would disregard their advice.

And Val, before I put my proverbial foot in my mouth again; what is the collective term for the OUCH team that dedicate most of their spare time to the suffering of others, if not "Trustee"?

_________________________________________________________________________ Yeah I know, my coat's already on.

Sat, 15/11/2014 - 23:47 (Reply to #14)
Val
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  :bigsmile:trustees, officers and members!  We have a great board of trustees and they are supported by the helpliner volunteers who are officers, and members who have been fighting the good fight since OUCH began in 2001.  So perhaps a good collective term would be 'old stagers', or 'CH warriors'???  :)  C'mon, competition time, what would you choose to call the OUCH team???

Val.

Sun, 16/11/2014 - 00:40
Phil
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I quite liked Shaun's posse and cowboy hats, perhaps some OUCH sheriff badges?
I think your names should be a different colour, so
we know who's advice is more (poinient?)
-Wouldn't want someone taking my advice And ripping
their doctors eye out.
That's my job.

Dan: You really need to post something on your thread.
You can see how guilty we all feel jacking it. :bigsmile:

_________________________________________________________________________ Yeah I know, my coat's already on.

Sun, 16/11/2014 - 08:26
Mr Git
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A Godsend of OUCH volunteers

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Tue, 18/11/2014 - 13:40
PeterM
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Back by popular demand! Not been updated for a while though ...

Triggers are varied and vary form sufferer to sufferer, but the only accepted ones (by the medical fraternity) are alcohol, nitroglycerine, exercise and increases in environmental temperature.  Triggers have become a perennial theme and the list continues.  If you don’t find your particular trigger below, I shall of course add it to the list.

Air travel/altitude

Air conditioning

Alarm bells/sirens

Alcohol/red wine/beer (especially cheap Dutch beer)

Allergies

Antibiotics

Antihistamine

Aspartame

Avocado

Barometric pressure changes/storm systems

Breathing

Bright light (strobe lights/shadows/sunlight/flickering/shops)

Caffeine

Cessation of stress

Change in seasons (Fall/Spring)

Cheese/strong/ripe cheese

Chewing/eating (too long/hard)

Chlorine (swimming pools)

Chocolate (hot chocolate)

Cigarettes

Cigarette smoke

Cinema going

Climate change/holidays

Cocaine

Cold remedies/nasal sprays

Cold/cold environment

Colin (did you spot it this time mate?)

Coughing/sneezing/nose blowing

Crying

Dairy products

Daylight saving/time changes

Eggs

Exercise

Fatigue

Flour

Ginger biscuits

Gummi Bears

Head massage

Heat/warm environment

High altitude

Histamines

Holidays/vacations

Hormonal changes

Hot baths/showers

Hunger

Ikea

Infrared heat/light

Irregular sleep

Lack of sleep

Laying in awkward positions (non-sexual)

Laying in awkward positions (sexual)

Lemons

Living

Long drives

Long lists (like this one)

Loud noises

Marijuana

Mould spores

Mosquito spray

Mother-in-laws

MSG

Naps

Narcotics

Nitrates

Nitrites

Nitroglycerine

NREM sleep

Nuts/almonds/sesame seeds

Oranges/lemons/citrus generally

Paraffin

Peanut butter

Personal computers

Pop corn

Rain

Relaxation

REM sleep

Salt

Salt and vinegar crisps

Sensory overload (too much noise/activity)

Sexual intercourse

Shellfish/shrimps

Sherry trifle

Showers

Sitting for too long

Sleep

Sleep apnea

Smoking

Spicy food

Stress

Strong smells/solvents (candles/petrol/perfume/paint/glue/fumes/joss sticks)

Sulphates (sulfates)

Sulphites (sulfites)

Supermarkets (Especially Sainsbury’s fruit and veg; apparently)

Tangerines

Too little sleep

Too much sleep

Topical steroids

Train (journeys)

Travel

Val (only in pink)

Vinegar (on hot chips)

Waking up early

Waking up late

Watching TV

Yeast extract (Marmite)

If you’ve made it this far – well done!

ATB

Peter

Tue, 18/11/2014 - 15:10
Mr Git
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Always a good read, thanks Peter :bigsmile:

 

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Tue, 18/11/2014 - 15:12 (Reply to #19)
Colin Allen
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Pierre,I noticed that your cycle returned after a particularly bad run of form by the gooners. Perhaps you should consider including Arsenal on the list.

And no cheap shots about the Reds.

Tue, 18/11/2014 - 15:21
Mr Git
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I've been wondering what this 'L' stands for :loser: ??  Is it 'Liverpool'? :~

That's a tenner you owe me Mike ;)

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