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Leonhart

New - From NZ

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Hello,

 

Very nice to find such a large amount of condensed information and many things I need to talk to my doctor about (strategies yet untried) but I was referred to this board by Bryce after he read my artical here: http://www.stuff.co.nz/stuff-nation/assignments/share-your-news-and-views/15312259/I-am-sick-not-unemployableabout the struggles of trying to from employment while Suffering from CH.

 

I was diagnosed with CH 14 years ago after suffering from "headaches" since I was 6 yo's, later when I was 10 the diagnosis was upgraded to migraines but the cycles confused doctor's, CH wasn't a known condition in NZ 24 years ago and was later re-diagnosed as a CH sufferer when I was 20.

 

My CH induces blindness as an effect due to pressure on the optic nerve as well as the usual effects.

 

I have tried everything under the sun, available in NZ and now manageable CH for this cycle of 1 bad attack per week using dietary changes and light wavelength blocking (Orange glasses work for me) stress management through meditation (unknown if this is related but helps with depressions as a side effects of inability to find employment) and fitness, again may be unrelated but helps in other ways.

I do have a question though and this may have been covered before inside s topic which I haven't had a chance to read through everything yet, Do you guys notice an increasing tolerance for pain, this cycle has lasted so far 8 years (3 per week for first 4 years, down to 1 per week on avg) I guess with the pain level CH induces tolerance is expect but I can accidently cut myself now and not notice, also I have a hobby as a medieval recreationalist in which we fight full contact in armour with Rattan (a very hard bamboo, unarmoured strikes would cause trauma, broken bones on joints) my pain tolerance has risen significantly this last cycle to the point that a hard blow is not felt and I need to rely on the vibration of the armour to indicate impact, I am worried that if this trend continues I will be able to break bones and not feel it.

 

NZ is a weird place for CH, Oxygen is a mostly unknown treatment of all the times I have been hospitalised I can say Oxygen was only administered once which was recently (end 2015?) mostly I am pumped full of morphine so will be discussing with my doctor the treatments I have found here and showing her the research.

 

I am very glad this forum exists, I read recently that Isolation is a symptom of CH now as the pain encourages us to withdraw from society, it's good to know we are not alone.

PS, I have found that A stronger Ginger drink helps a lot as a attack triggers, if anyone is interested I can add my recipe for Alcoholic malted ginger (brewed) it works really well for anti nausea as well allowing you to avoid over the counter  drugs that reacts with other drugs and far more palatable and more effective that ginger tea's (I have found, may not work for other, but works for me) think ginger beer on steroids its very strong.

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Hi there, I joined this forum a couple of days ago looking for support to help with my 10 year old sons headaches.  We are in NZ also (Tauranga, where are you?), so am interested to hear how you have found getting a diagnosis and support here.  I  learned from trying to get help for his autism that sometimes you have to go kicking down doors until someone eventually listens and believes you! I suspect I will need to go the same route with his headaches also.... :( It is so tiring fighting to get help form the people who are supposed to be helping you.

 

Anyway,  I read an article somewhere online about a NZer who was able to get oxygen for his CH, do a search on google for something like 'getting oxygen for CH in NZ'. He described how he went about it and where he eventually got the oxygen. It seems this may be the best option for us also, but I need to get advice on using oxygen for a child first, and talk to the pediatric neurologist about the situation.

 

So, welcome! And I will be interested to hear more about your experiences getting support here in NZ.

 

Toni

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Hey Toni :) I am in dunedin but I know Tauranga well, 

 

As for O2 I am very lucky in this regard as we have a local BoC supplier (I am sure you do too) who provides O2 for OxYacetylene welding not med grade but is clean and pure, OxyA kits are cheap(ish) don't require special permits here (you can even get the tiny portable kits from Mitre 10 (if they stock them), I have a small Kit I use when welding and cutting for making armour, it's actually easier for us then other countries, I never thought of trying it for CH, but have rigged a mask from a respirator this morning to try for my next attack.

for me support in NZ has been a long, long road so many people here think CH is just a bad headache that some panadol or nurofen + codeine (in dire times) will fix and they go pale when you tell them you are put onto IV morphine.. I have been misdiagnosed until I was 20 as CH was not known very well in the NZ medical system and is still badly treated, back in the day there were no approved treatments but nowadays you not treated as a lab rat anymore.

The biggest issue i've had is employers now wanting to hire you and CH is very misunderstood in NZ, they dont realise its controllable once you find the right combination of meds and treatment or at least can be alleviated or delayed.

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What a nice exchange to read!  Thanks to both of you.

Leon', I have a question.  Can you say a little more about those glasses -- what they are and where you get them?  Also, do you have any issues with the pressure of the glasses on your nose -- does it cause you any pain?  Thank you!

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Hey CHfather,

 

Absolutely, I was recommended them by my Doctor who specializes in geriatric medicine and has some experience with Migraines and CH they are used quite commonly here in NZ for Migraine suffer but also now recommended for CH suffers too (and are covered under our free healthcare here is prescribed by a doctor) basically there has been evidence that certain wavelengths of light can trigger Migraines and CH attacks (although the evidence for help with CH is currently inconclusive and more research needs to done) it could be that they help manager other symptoms

 

Different colours block different spectrums but is also good for CH sufferers who suffer from Photosensitivity and a syndrome called Irlen Syndrome http://irlen.com/Amber helps me a ton its one of the techniques I have been using to control my CH and reduce triggers or buildup that triggers and attack. 
 

I use a sunglasses frame which does not press on my nose the frames just very gently rest (you may need to try many many frames that fit your face shape) But I have found wavelength blocking to be effective.

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Leonhart, can I ask about your headaches when you were a child? Did they start off frequent and severe or did they start as less and get worse as you grew?  My sons are every 3 or 4 months and several over a few days (the longest has been 5 days), but they appear to only last up to half an hour at the most.  I am hopeful that they won't escalate as he ages but would like to know if others have found that they do.

 

CHfather, thanks for the encouragement, you have been more than welcoming and very helpful!

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of course tonic, when I was 6 I got frequent headaches usually lasting an hour or more if I didn't find a quiet and dark place a corner would do in a pinch, they would happen in cycles but as I was younger they were far more manageable, my family has a history of untreatable Migraines  that is not defined by gender (runs only in male or females lines in some families) but my older sister and younger brother don't get them. (my grandfather did, grandmother didn't)

I would feel dizzy and irritable as part of the onset would come in what I now know to be "clusters" but I had difficulty describing the pain as a child, Burning was my preferred word but in those days headaches were scorned and migraines new to NZ, I was given panadol (1/2 a tablet) and told to "suck it up" I had remissions of years before another cycle would start again always increasing in severity as I aged.

Tonic, management of them now may save your son from the pain I now deal with, now CH is more manageable and I have noticed a lessening of the escalation since I was diagnosed by a specialist when I was 20 but for the first 14 years the escalation increased rapidly due to no treatment, this severely impacted my schoolwork and has left me with lifelong issues I am dealing with today I would honestly say identification and diagnosis is critical.

I remember vividly having to sit an end of year exam that set my ability to get university placement while having a CH attack, suffice to say I failed, but all's not lost management is much better now and new research is being presented all the time, after reading through documents here I can't believe that Oxygen isn't the goto treatment.

does you son find his light sensitive? (no one asked me when I was a kid so I don't remember and am unsure if it's a symptom or was caused by CH (a good way to know is if he's out in sunlight does he sneeze?)

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HI Leonhart, I'm new to this website but so excited to be a part of a great community and wealth of info. I have found ch has really been very isolating and frustrating. I didn't know people could get ch as children ( I started at 30) and I'm so sorry for your experience but really happy that tonic and other parents of ch suffers can benefit from your advice so thank you. I just have to say oxygen was a life saver for me and I'm not exaggerating. I have had ch for 15 years, the first 7 completely untreated and it was hellish for about 2 months a year. I dreaded having them the other 10 months. Sounds like you've been chronic without breaks and I can't imagine. I can't address your pain tolerance but I can't recommend oxygen enough! I also have a question about you're ginger drink. Does it contain alcohol? Alcohol is a huge trigger for me, guaranteed blistering ch and very hard to relieve even with oxygen. I love ginger but curious about the alcohol content.

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it does contain alcohol (2%) as it is an adaption to a period recipe, but theoretically it can be adapted if it was made like brewed ginger beer, you would need to boil the ginger to kill off any natural yeats or microbes but there's no reason why it wouldn't work.

 

You would need to goto a brewing store to get the "brown malt" I can try adapting the recipe this weekend if its something you would be keen on? (my medieval recipes requires it to be left for 3 months (better after 1 year), but an unfermented version would be drinkable after hours and chilled) I can say it really helps (and is tasty) 

 

here is the unaltered recipe, question are you ok with ginger beer? (it's usually 1% which isn't considered alcoholic by most nations) and do you know if it's the sulphides? because there are ways around that if you make your own (eg, is brewed cider a trigger?)

 

Malted Ginger

Malted Ginger is my own creation, a mix of a strong ginger beer and Brewers malt (brown), has a very strong ginger taste, great on a hot day of for those travel sick.

16L of water
2kg's Dextrose
800 grams of fresh ginger
200 grams (again) of fresh ginger (this is used in bottling don't buy yet)
500 grams of brown brewers malt
High fruit wine yeast

Firstly take 1 Ltr of water and 800 grams of fresh ginger (sliced like rounds of a cucumber) and bring to the boil, boiling for 30min

In your fermenter take the remaining 15L of water and mix in the 2kg's of dextrose and 500 grams of Brown brewers malt

Add the boiled ginger (liquid and ginger) to the fermenter

Check the temperature of the liquid in the fermenter is under 34 degrees celsius  (its best to make sure it's 23 degrees or less if you can be patient) and sprinkle in the high fruit wine yeast

Mix a little then seal your fermenter and set with your airlock  then wait for 1 - 2 months depending on fermentation rate.

 
after it stops fermenting rack/bottle fermented brew.

Notes: Ages very well, But mine has never lasted long past 1 year, it is always consumed.

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 I didn't know people could get ch as children

 

Eur J Paediatr Neurol. 2009 Nov;13(6):524-9. doi: 10.1016/j.ejpn.2008.11.002. Epub 2008 Dec 23.
Cluster headache in children--experience from a specialist headache clinic.
Abstract
BACKGROUND:

Cluster headache is a primary headache disorder with the distinct clinical features: unilaterality, extreme pain, cranial autonomic features and periodicity. The prevalence of the disorder is 0.1% in adults and with a male predominance. The age of onset is usually in the second and third decade of life but the onset in the first decade is recognised. We describe our experience of cluster headache in children and review the literature. We have attempted to define the clinical features of cluster headache in children as compared to adults, the role of clinical investigations, reliability of clinical diagnosis, effective treatment and management options.

METHODS:

A retrospective casenotes review was conducted on all children with suspected cluster headache seen in our centre from 2000 to 2005. Case ascertainment was conducted using International Headache Society guidelines, and by telephone interviews with the parents.

RESULTS:

Eleven children were identified, (seven male and four female). The median age of onset was 8.5 years (range 2-14). The median age at diagnosis was 11.5 years (range 7-17). Eight children had episodic and 3 children had chronic cluster headaches. The average attack duration was 72 min. The commonest reported bout frequency was one per day. Several children had circadian and circumannual periodicity and most displayed the other features of the disorder, such as agitated movement and cranial autonomic activation. Oxygen, methysergide, verapamil, zolmitriptan and dihydroergotamine were the drugs which were effective in terminating the headache. Paracetamol, ibuprofen and paracetamol/codeine combinations were not.

CONCLUSION:

We describe our experience with cluster headache in eleven children who all presented before the age of 16.

 

Source : http://www.ncbi.nlm.nih.gov/pubmed/19109043

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Leonhart, thanks for that link regarding children, I'll go off and read it soon.

 

I am booking my son in to see the pediatric neurologist to specifically discuss diagnosis, I really hope that will lead us on the path to helping him. He doesn't have light sensitivity, in fact if the headache is on the milder side he will seek out a loud tv show to distract himself. When they are bad he just lies down and rolls about crying for me to stop it. Fortunately they are short lived for now and if we can get a diagnosis and access to oxygen then we may be able to prevent him from suffering as  others like you have.

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he will seek out a loud tv show to distract himself. 

 

That right there is important, Migraine suffers (from evidence I have seen) have great difficulty with TV and loud noises during an attack, Distraction during an attack as a coping mechanism is a Key bit of info.

I had a feeling that Photosensitivity was caused by CH, not a symptom of /sigh another thing I can attribute to lack of management.

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