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Posted in The old girl returns! on 06 Jul, 2016 - 11:09 pm

Hi Roger,

I was so pleased to see the video that you have on the home page".Cluster headaches/ migraines"

I have to say this was such a pleasant surprise to me,as i walked away from this site 2 years ago as we had a private conversation about what makes a cluster headache sufferer fit into your box at the time,it is great to see you are able be more inclusive about chronic sufferes

As said before i am diagnosed with chronic "migranious niralgia"(or more commonly known as chronic cluster headaches) by one of the leading G.Ps in Sydney.

Today I was searching for the correlation between cluster headaches and addiction (as i was struggling)and read a great thread back in 2013 which helped me a lot ,which reminded me about this site,

I was prescribed lyric 300-400mg per day approx 6 months ago, which has been working well. It brought down my CH to 2 -3 days month But over the last 6 weeks i have been severely triggered by shingles and other bad viruses that are going around and have had stretches of 20-25 days per month and i am on my knees, had to resort to panedine forte again and,being a recovering addict and clean this is always a problem to me. i am attending Narcotics Anonymous meetings again which is good to to remind myself of where i could go and where i came from.Sometimes i feel so helpless with this condition.
I will go and see my neurologist again it has been about 3 months since i visited him
Thanks for the site and keep up the good work Roger and sorry to hear you are suffering

Oh here was my post back in 2014


19 Sep, 2014 - 7:35 pm

Hi Miss Diagnosed,

Thank-you for sharing,my name is Henry and i totally relate.. as i was finally diagnosed with Chronic "'Miganous Niralga"' by a leading Sydney neurologist (or more simply put CH) approx 6 years ago.. before that i too thought it was a sinus problem and actually had my sinuses cut out on my cluster side(right side) and to my dismay my CH were back the day i was relapsed from surgery

I affirm all your symptoms to be true and correct to be here you are one of us.. i too have pain -like a skewer/hot poking behind your eye,feels like sinus pain but is in the brain, and goes all way down my right side,neck and shoulders, my right sinuses feel like they are swollen.. when they are not,my teeth always go numb on the right side,it is in the brain pain behind the eye that is indescribable,sometimes my right eye is too painful to touch..The headache is constant like a cyclone that is always there(accept in the lulls) and then comes the big wind gusts that knock me over for a few hours ..then it drops back to just the cyclone and this can go for days..it is called chronic...there is perhaps a few days relief over the period of a month.I have to keep moving to avoid the pain..can sit still

there are people on this site that will tell you that this is not possible nobody has cluster headaches like these.. apparently their version of cluster headaches is the correct one ..that is their story and true for them... mine is like yours, mine is the story of chronic sufferer and i share to your symptoms

I often feel nausea in the midst of a cycle..when i was younger i would throw up mid headache,this happens to me less as i get older

I have tried over 20+ supposed medications and their side effects from desril to lithium to oxygen etc etc...unfortunately Nothing worked .....
Most times.. i bear it till it gets too bad then retreat to the bedroom top pace and groan ,i take 2-4 panedine forte to dull the impact..and if that doesnt wotk take 3-4 more yet i am acutely aware of the consequences of opiates and their pitfalls...it seem panedine is the lesser evil for me today
My wife has my diet regime for me,and i am also going to stop using my Bluetooth and try to be away from radio waves (this is just an experiment as my CH have been getting worse since using my Bluetooth but who knows if this is the culprit.. possibly not helpful)

I am acutely aware of smells.. and if a solvent is within 500 meters i can smell and can be triggered,i cannot sit on a perfumed bus or enclosed spaces ,my wife cannot use standard cleaning fluids as they are a triggers,hot days full of physical work are triggers, bed to be present for my family sometimes regardless of how i am feeling

i don't(cant) smoke, don't(cant) drink alcohol, coffee is a huge trigger for me haven't had coffee for years,chocolate is a trigger,but relapse in frequently to my demise,hams and salamis are lethal for me and so goes the list..
The change of seasons is the worst trigger.. knocks me flat,or a big low pressure system
Or recently it also has been viruses i pick form the kids(i have a daughter 6 and boy 4)this year has been a killer as each moth presents a new virus and a new onset of CH
I have no solutions for you to say keep coming back here, as it is wonderful not to feel alone, to be able to have a voice and most of all read and listen and relate,it has truly helped me to read others stories,although i should share more often..,just reading has helped me immensely
I have suffered these symptoms for over 40 years now and unfortunately for me it is getting worse i have little to cling onto but when i read your story tonight i felt i was not alone again. Thank you and please stick around

P.S be aware that most G.Ps basically know nothing of this and if you ask them they will probably google it in their surgery to find out what you are talking about...probaly refer you to a neorolgist..keep your chin up and know you are not alone
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Posted in newly diagnosed on 19 Sep, 2014 - 7:35 pm

Hi Miss Diagnosed,

Thank-you for sharing,my name is Henry and i totally relate.. as i was finally diagnosed with Chronic "'Miganous Niralga"' by a leading Sydney neurologist (or more simply put CH) approx 6 years ago.. before that i too thought it was a sinus problem and actually had my sinuses cut out on my cluster side(right side) and to my dismay my CH were back the day i was relapsed from surgery

I affirm all your symptoms to be true and correct to be here you are one of us.. i too have pain -like a skewer/hot poking behind your eye,feels like sinus pain but is in the brain, and goes all way down my right side,neck and shoulders, my right sinuses feel like they are swollen.. when they are not,my teeth always go numb on the right side,it is in the brain pain behind the eye that is indescribable,sometimes my right eye is too painful to touch..The headache is constant like a cyclone that is always there(accept in the lulls) and then comes the big wind gusts that knock me over for a few hours ..then it drops back to just the cyclone and this can go for days..it is called chronic...there is perhaps a few days relief over the period of a month.I have to keep moving to avoid the pain..can sit still

there are people on this site that will tell you that this is not possible nobody has cluster headaches like these.. apparently their version of cluster headaches is the correct one ..that is their story and true for them... mine is like yours, mine is the story of chronic sufferer and i share to your symptoms

I often feel nausea in the midst of a cycle..when i was younger i would throw up mid headache,this happens to me less as i get older

I have tried over 20+ supposed medications and their side effects from desril to lithium to oxygen etc etc...unfortunately Nothing worked .....
Most times.. i bear it till it gets too bad then retreat to the bedroom top pace and groan ,i take 2-4 panedine forte to dull the impact..and if that doesnt wotk take 3-4 more yet i am acutely aware of the consequences of opiates and their pitfalls...it seem panedine is the lesser evil for me today
My wife has my diet regime for me,and i am also going to stop using my Bluetooth and try to be away from radio waves (this is just an experiment as my CH have been getting worse since using my Bluetooth but who knows if this is the culprit.. possibly not helpful)

I am acutely aware of smells.. and if a solvent is within 500 meters i can smell and can be triggered,i cannot sit on a perfumed bus or enclosed spaces ,my wife cannot use standard cleaning fluids as they are a triggers,hot days full of physical work are triggers, bed to be present for my family sometimes regardless of how i am feeling

i don't(cant) smoke, don't(cant) drink alcohol, coffee is a huge trigger for me haven't had coffee for years,chocolate is a trigger,but relapse in frequently to my demise,hams and salamis are lethal for me and so goes the list..
The change of seasons is the worst trigger.. knocks me flat,or a big low pressure system
Or recently it also has been viruses i pick form the kids(i have a daughter 6 and boy 4)this year has been a killer as each moth presents a new virus and a new onset of CH
I have no solutions for you to say keep coming back here, as it is wonderful not to feel alone, to be able to have a voice and most of all read and listen and relate,it has truly helped me to read others stories,although i should share more often..,just reading has helped me immensely
I have suffered these symptoms for over 40 years now and unfortunately for me it is getting worse i have little to cling onto but when i read your story tonight i felt i was not alone again. Thank you and please stick around

P.S be aware that most G.Ps basically know nothing of this and if you ask them they will probably google it in their surgery to find out what you are talking about...probaly refer you to a neorolgist..keep your chin up and know you are not alone


Posted in Virus trigger and other triggers on 27 Jun, 2014 - 1:21 am

The longest and most intense trigger for me is when i get a virus,the onset of the new virus is the worst..Now my kids are 6 and 4 they are constantly exposed and bringing home new viruses each week and as a result i have been in a constant state of cluster for over 2-3 years..it has been so difficult to keep it all afloat,force 8-9 clusters, run the business, up at 5.30 regardless..and keeping a check on myself and my reactions to people while i have a screw hanging out of my eye.My employee needs a medal for dealing with me..My wife is just wonderful , the unconditional love she gives me.
I unfortunately was dealt the herpes simplex virus(genital) when i was about 18.and seldom get a dose ma-bey once every 6-8 months..but about 3 weeks ago got a bout of herpes which is a serious virus.....this left me with force 9 cluster for 7 days without a break..many times i went to st Vincent's at 2 am for oxygen.. but finally accepted it doesn't work for me.. thought it did the first few times..but only as my virus subsided did the cluster subside..
I was diagnosed as a chronic sufferer.. years ago now ..and have tried most concoctions ,potions and ideas to no avail today.. basically i get 2-3 headaches per week that can last 12-15 hrs at a time..this my regular.. triggers can be weather changes,too much sun,too pysically overtired,perfumes and many others or just for no apparent reason.. but the worst is when i come down with the nearest virus
My teeth will go numb,and the screw starts in the back of my right eye and this is a tell tale sign there is no return into a my private headache hell..Its wearing me down now..
Thanks for letting me share and inspiring reading your stories


Posted in My Introduction on 25 Aug, 2013 - 4:19 am

Hi All,

It has probably been 2-3 years since i have been on the site.
Great to read and relate again.Thanks for sharing

I am a chronic sufferer was finally diagnosed by a neurologist in Sydney about 5 years ago with chronic migranus neuralga (if you look for the definition of that it just means cluster headaches)It was a great revelation for me when i finally was diagnosed! it answered many questions
My variety has been afflicting me for as far back as i remember probably aged 8 when i used to drink soft-drinks in the sun, would trigger and go all day or night,never was given anything stronger than a panadol and the headache would mostly last for 8-12 hours with vomiting attached
The symptoms have never changed for 44 plus years usually 2-3 headaches a week ( sometimes i will get an off week) and behind my right eye in the same spot feels like a skewer is being poked in and out.And i become and absolute ares-hole to be around,totally intolerant and if pushed ave been abusive.I don't like myself when i have a headache (and would do anything not to have one),my wife and i have learn t to stay away from each other when i am suffering.
And today when my kids are really screaming i often go elsewhere for an hour(if i can).

When i turned 24 i found opiates( heroin) and thought i had found heven from hell,
I was a binge user and if i had a shot it would generally keep my headaches well at bay,instant relif for 36 plus hours.This behavior lasted for 10+ years
But the consequences were great,as at times got a habit for maybe a month or two and i ended up in and out of detoxes ,the headaches in the detoxes like i had never seen(they were scary and at this time i still was in the dark about what my condition was.I thought everyone who said they had a headache went through this and i was just a wimp)
I finally started getting clean when i was 36 and of course was all mixed up about my reasons for using,My A.A sponsor told me i was different and i had the disease of Addiction and need to stay clean one day at a time(good advice,and sobriety does work, but wont help me if i get a serious cluster headache,perhaps i was an addict but was i born like that?,perhaps we all are able to be if push comes to shove, who knows?.. but my main concern at the time was to dull my headache,and my headache had nothing to do with my dysfunctional family,anyway that is all another story i don't buy into much today just get on with life
But i did battle on like this for years,sometimes relapsing,going to hundred of meetings believing god would finally solve my headaches and my desire to shut them down.
Once clean I thought it may be cigarettes that gave me the headaches(no doubt a good trigger when in my cycle) but once I gave them up i still suffered,i thought it was maybe chocolate(another good trigger for me),gave that up and still suffered,then i thought it was my sinuses and had a doctor suggest i have surgery to have them surgically removed which i did, with the hope this would solve this problem,What a let down it was the day after the surgery i got a massive cluster.it seem everyone occasionally had headaches and i was just a wimp about mine.
finally i was sent to a leading neurosurgeon who told me my condition,and one of the first things he asked me was "have you used opiates to solve you problem in the past" I thought ah ah mmm. now i was seeing the bigger picture
So the fact i came from a dysfunctional family and all the other things you learn in 12step fellowships defiantly had merit for me,but unfortunately the AA journey could not give me the facts about my headache condition.
So first it was imigram, tamedol,theni was on Deseril (oooh heavy) then Lithium carbonate
Nothing was working again,and i was getting serious headaches
so i had to find a solution quick,i used t go to emergencey and they would give me panadine forte and this would not fix but dull.
Back to the opiates again,i thought oh dear
But for the past 3 years if i get a serious enough cluster which is twice a week i take 2-3 panedine forte ( a great alternative to heroin considering i can have it in the cupboard on hand) ihave only ever taken the panedine forte when i have cluster headaches, and never abused them.Horrible things really
I havent drunk alcohol, smoked cigarettes,or used heroin for years and it never really enters my mind.
I probably take 4-5 Pandene forte per week. I dont worry about my headaches any more as they are permanently in the cupboard if i need them
This is far from a perfect world,but really great to there for my family and for myself,it is a compromise, i have made as this is all i can see that works for me
it took me a long time to find a doctor who would prescribe me more than ten at a time with my history of heroin abuse
So that is my story and i rattle along and like most don't even try to explain to people about my cluster condition.
My employee can sense a headache in me sometimes before i do, as my eye will droop and he can sense the change and he will suggest that i take some panedine forte which i really hate now, as they make me feel like shit and makes me constipated ,But it dulls my headache to make my life tolerable for me and especially those around me
The doctor prescribed and I tried taking pure codeine once but does not do the trick

Anyway thanks for listening Look forward to reading your stories

Regards
Henry


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