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Showing all posts by "zara chappell"

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Posted in Untitled on 23 Mar, 2011 - 12:06 am

Welcome Bluesphere, my brother and I decided to do this site maily for Australian sufferers so that we cld get out the info we have researched over the years and give people an outlet to release their thoughts and feelings. Also we have gathered valuable info on different meds that work and ones that dont, also listing practioners that KNOW what CH's are and will deliver what meds we need to cope.....See if your doc can prescribe tegretol ( to numb the brain receptors) and Imigran Nasal Spray, as they are the most common drugs that help. I hope urs go away soon, mine are about to start grrr

Posted in Untitled on 23 Mar, 2011 - 12:00 am

Hi Dday2, Welcome to the site.
I wish there was an op that wld cut the monster out, as i know people wld pay anything to have it gone, i know I wld. How long have u had them for ??? I cant leave my house for 4 weeks, am housebound, cant even drive my daughter to school, have to rely on other people to do that, which is sad. I can only drive to my chemist 1 km away and my docs and then i have to try and time that right... People dont really understand the pain, they think bad headache, i say no its worse than a migraine, i actually got a migraine in the middle of my last episode 2 years ago - im like WTF how can i get a migraine too, what did i do in a past life to deserve this shit.... i get annoyed at people not understanding the pain and how intense it is, i always try and direct them to this site as it does explain it.

Posted in Untitled on 22 Mar, 2011 - 11:48 pm

I also use the Nasal spray, and my chemist lets me get them all in one go and my doc will let me stock up on them b 4 i get my attacks, so i have plenty, plus i take tegretol (600mg a day) which numbs the brain from feeling pain, and that helps so as the attacks are just a bad feeling in the head, though occassionally one slips through grrr
but i have taken up to 6 nasal sprays in one day - with no adverse side effects, as i wld rather kill the pain and deal with the side affects later

Posted in Untitled on 22 Mar, 2011 - 11:43 pm

I have also been having these for the last 13 years, every 2 years.....if u dont mind me asking how old are you?, Male or female?

Posted in Untitled on 22 Mar, 2011 - 11:42 pm

HI, i know the pain u r gng through, i am due to get mine within the next 8 weeks, and the waitin for them to happen sux!! - i highly recommend you go to the doc and get him to prescribe tegretol and take 600mg a day each tab is 200mg so 3 times a day, it will numb the attacks so that its a dull ache, its an elipesy med that numbs the brain from feeling pain - also have u tried the Imigran Nasal Spray, if u can get to the attack within the first 2 mins it will abort the attack most of the attacks laast for 1 hr duration and i can get up to 6 a day, for a period of 4 weeks... thank god for Tegretol... let me know what u r using for them...and i do feel ur pain ;(

Posted in Untitled on 11 Jul, 2009 - 7:39 am

HAHAH i cant work when i am gng through this phase‚ too hard - kids and the noise too much icon so lose 4 weeks of work and dont get paid‚ that sux... I suggest u go back to tegretol‚ i use to to block the brain receiving pain messages so it dulls the attacks so i am still semi alive icon

Posted in Untitled on 09 Jul, 2009 - 6:45 am

Hi‚ i have been having CH's for 12 years - and yes temple pain is associated with CH's - so is the feeling that your neck is out all the time and head feels hot in certain areas‚ around the neck and at the top of the fontale area/head

Posted in Untitled on 09 Jul, 2009 - 6:27 am

Hi Frosty‚ just some info‚ i am on the war path trying to find a top Neuro here in melb who can help‚ been to 2 who know jack shit‚ pred. didnt work‚ oxygen doesnt work‚ yes they come on during REM sleep - wish i cld bypass REM sleep or go into an induced coma for 4 weeks‚ then again knowing my luck they wld break through the god dam coma!!!! - i will keep you guys posted on here when i find a neuro who knows something!! - I go to the Mill Park Super Clinic and see the medical director there‚ hes awesome Dr Moham‚ hes trialing my on Topamax - hes dealt with a few CH sufferers and is one of the best docs i have ever found‚ he's also trying to find me the best neuro - as he said had he been in NZ (where he used to work for many years) he wld have no probs getting me one- hes Indian but has travelled the world as a doc and least he is a normal/can understand him doc smile plus he loves his cricket‚ so we stir each other up alot - Recommed Tegretol to reduce the severity of the attacks‚ most my attacks this cycle have been a 4/10 not 10/10 screamers‚ and have been able to abort 90% with imirgan Nasal spray - will keep e 1 posted here

Posted in Untitled on 09 Jul, 2009 - 6:11 am

Hi Tania‚ i myself am in my 5th week of CH's UGGG (normally they last 4 weeks to the day and go‚ but nooo not this time) been suffering them for the last 12 years (every 2 years)‚ god i hate this time of year!!! - i also have a daughter (im a single mum) and no family support - just good girlfriends.(i live near u). I wld be very weary of any surgery‚ since they cant define the 'cause' of them'.... this time around i have been taking tegretol‚ along with imigran nasal spray - and i have not had many 10/10 attacks‚ only 2 in nearly 5 weeks -been able to abort 90% of them (imigran)‚ so only a dull ache‚ I would def give Tegretol a try FIRST b4 surgery‚ I had an MRI during this attack cycle and it was normal‚ showed NOTHING sad - i think i wanted it to show something so i cld say ok thats the prob lets fix it. - only thing they did find was an enlarged blood vessel in the front above my eye - hmmm‚ and i told them to check the hypthlamas and that i had ch's - u want to talk to me pls ring me on 0408 081918 or anyone who wants to get ideas - sometimes its just nice to talk to someone who is also suffering so u know u are not alone‚ cause we all think why me and WTHell have i done to deserve this. My brother and I have set up this www years ago - cause we both suffer with them and realised people like us needed 'our' site. So pls feel free to talk to me if u want. Im pretty bored at home staring at 4 walls for 5 weeks‚ life stops when we have them!

Posted in Untitled on 08 Jun, 2009 - 11:53 pm

Hi GUS‚ forget the water and mushies etc‚ just ask your doc for some TEGRETOL‚ its a nerve blocker - stops the brain receiving pain messages‚ so you head wld still be having an attack but u dont feel it‚ no pain woohoo (just a warm head)‚ it works‚ im using it now and used it 2 yrs ago (last cycle)

Posted in Untitled on 08 Jun, 2009 - 10:54 pm

TEGRETOL is a wonder drug for clusters‚ generally used to treat elipsey‚ hypertension and ADHD‚ as it blocks the brain from receiving pain messages‚ I found it by chance when researching pain blockers or similar on the internet when i last had these stupid rotton CH's 2 years ago‚ found Neurotin - but thats exp‚ so my doc suggested Tegretol - same drug but alot cheaper‚ it works SOO well‚ my CH's just started again - have started taking Tegretol and voila! no pain‚ just dull ache which makes it bearable - can even work (bowling alley)..
I'm urging every one who is suffering to try it - you have nothing to lose and everything to gain - you get your life back!! Your Doc will give it to you if you explain why it works and that it works for other sufferers

Posted in Untitled on 10 May, 2007 - 12:12 am

Oh and yes to the nostril feeling painful too and the joint areas‚ my whole neck and back felt like they were out of place‚ but they arnt‚- lasted 4 weeks feeling like that‚ but more so during an attack‚ tonite is my last nite - been 4 weeks‚ always last 4 weeks!! i have tried so many things‚ like chiro‚ acupuncture‚ herbal‚ diff drugs that dont work‚ except this one i mentioned....

Posted in Untitled on 10 May, 2007 - 12:05 am

HI Ed‚ i too this time have had that where u get it shoot across‚ neveer used to happen but did this time‚ maybe the gremlins are debating what side to stay on.. smile..but yes it can happen smile

Posted in Untitled on 10 May, 2007 - 12:03 am

Hi RG‚ welcome to our site.

A classic cluster headache starts with a blocked nostril generally one side and semi watery eye‚ more droopy eye/painful eye you cant keep open... within 1-3 mins the pain of a Cluster generally starts and builds up to a crescendo and within 30- 40 mins (can be diff for diff people but general averages support this) its reached its peak where the one side of the head is burning(feels like it) and the pain behind the eye is debilitating‚ sharp stabbing pains‚ that goes back into the head and the top of the head feels hot and also the back of the neck too. The right side of the face is so painful‚ the pain is really hard to describe but you wldnt wish it on yr worst enemy‚ its like something is inside your head trying to get out and drilling your head. after the CH has reached its peak it tapers off and within generally 1 hr - 1.1/2 hrs its totally gone and u r pretty much exhausted but able to get out of bed and do things... there is NO warning signs of an attack b4 it happens‚ usually u get a feeling with the nose as well and if u can get an imitrex/imigran nasal spray up the semi blocked nostril it can stop it‚ BUT i have found (through research) that the drug Carbamazepine Sandoz (Tegretol here in australia - an epileptic drug‚ works wonder on stopping the pains of the CH's‚ it stops the nerves from sending pain messages to the brain‚ you shld get some if u do have CH's - you can tell the doc you have Trigenimal Neralgia‚ which is the TN Nerve that feeds of the area where the CH's come from‚ most docs dont know what CH's are‚ so if u say that you have a better chance of getting it‚ and descibe the pain u have. I myself got them when i was in USA once and omg took ages to find a doc who knew anything about them to get basic Imitrex.

Any more Q's pls ask here as my brother Roger or myself or someone else on here will answer to the best of our ability
Good Luck Zara

Posted in Untitled on 27 Apr, 2007 - 11:42 pm

Also would like to personally thank a friend of mine in USA (just got him to join) who has helped me with research as well and has seen me and nursed me through an attack period - when i cldnt fly home‚ hes been a legend‚ along with my brother who has helped.
Sincere thanks to both

Posted in Untitled on 27 Apr, 2007 - 11:24 pm

Hi every 1

I have suffered and i mean SUFFEREDicon
for 10 yrs from these debilitating 'headaches' and with my brothers help - he diagnosed me as he suffers too - i have just a few days ago come up with a new drug that does WORK in controlling the pain and the Clusters. Its Tegretol or Neuroutin - both do the same. The are an epileptic drug and work by decreasing nerve impulses that cause pain or blocks the nerve from sending pain messages to the brain - Part of the cluster pain is from trigeminal neuralgia and this drug blocks/stops this from happening.....All in all it has stopped me from getting the painful cluster attacks‚ all i really get now is a mild pain down one side of the face‚ but that wld rate a 2 on the scale. icon- I can feel something going on in my head but its not coming to fruitionicon - I cldnt be happier..
AND i have had 2 full sleep nites without waking up with attacks‚ it feel sooo good to sleep all nite again.
So basically‚ i am telling u all GO to yr doc if u r having attacks and get some Tegretol‚ you have nothing to loseicon tell him you have severe Trigeminal neuralgia pain due to Cluster headaches. And there shld be NO need to take any other meds with it‚ I also found the Imigran Nasal Spray got rid of the pain i felt in the side‚ so pain free. BUT the only side effect i felt from taking tegretol is feeling slightly dizzy for a few hrs after taking it‚ like yr equilibrium is out of whack. BUT small price to pay for no more CH's YAYAYAY iconicon

I wld like to know how people go on this‚ as I happened upon it in my research when i found out someone with epilepsy also had CH's... and the Pfizer drug website.

Thats all
Take Care icon

Posted in Untitled on 26 Apr, 2007 - 11:05 pm

Hi‚ sorry yr son is suffering and soo young to be getting them‚ i would suggest you do get a CT scan done of his head to rule out any other possibilities as he is very young to be getting CH's BUT if that is what he definatly has - i would suggest Tegretol‚ for the first time in 9 yrs it has subdued my attacks‚ its an epiletic med but works by blocking the pain messages to the brain through the nerves. and for attacks Imigran Nasal Spray i would suggest as it gets up the Trigimenial Nerve area real quick.

Posted in Untitled on 21 Apr, 2007 - 1:13 pm

Hi‚ sorry your hubby has them‚ i know i have a close friend who looked after me for 4 weeks in the USA while i had them‚ even he was reduced to tears watching me in that amount of pain and knowing there is nothing he can do. I personally - having had them for 10 yrs and done alot of research with my brother - do not believe alcohol‚ choc‚ smoking to be a trigger‚ they are triggered by our biologic clock‚ and are seasonal‚ when seasons change‚ something in our head reacts which is what causes them. type in google Peter Goadsby and read his research on CH's‚ if u cant find the link on our www‚; its very interesting‚ i am also trialing a new drug called Neuroutin as of today as its a nerve blocker - stops the nerves sending pain messages to the brain‚ am hoping it will work so the pain will lesson..will keep this site informed. take care‚ i get mine every 1 - 2 yrs for 4 weeks at a time and usually around april/july or oct.

Posted in Untitled on 21 Apr, 2007 - 9:28 am

Hi‚ i have tried acupuncture in the middle of my attack period and no it didnt do any good‚ didnt even make the slightest bit of difference‚ maybe it depends on the person doing it as 'do they do it right'‚ i dont know‚ i was desp. so tried it.

Posted in Untitled on 21 Apr, 2007 - 12:39 am

Hi Kell and e 1‚ I started having these when i was 30 - great bday pressieicon
I also wish men wld keep this to themselves‚ why are us few women so dam privledged to get them!! Also on the US CH site someone mentioned something about too much testosterone cld cause it - well sorry but makes no diff‚ when i had my last lot last july i (with my dads help) hes a Medical Scientist - i got every blood test imaginable run to see if there is anything in my blood that cld be causing it‚ but theres not - no high testosterone levels..thank god i wldnt want to be a manicon icon They do liken CH's to the same pain as giving birth - 6 times a day (i get 6 attacks a day) - see my member diary - phew or amputation without anesthestic... I just wish they wld go away...thew worst time i had them was in USA i had to stay an extra 4 weeks and finally get some help there which wasnt easy considering im not a Yank‚ plsu the meds cost sooo much there‚ had a major fight with my travel insurance company who in the end paid me all the momney i had to pay out for medications‚ docs etc

One thing i have noticed is that sometimes they are bought on by a cold‚ a few times i have had cold like symptons (i did this time) and then wham they hiticon
Wondering if anyone else has noticed that - i know they are bought on by seasons changing and our bio-rythemic clock.

So all u females u arnt alone out there‚ which is why my brother and I did this site so we cld find out who has them and ages‚ sex etc
check my other posts and member diary
Byes for now

Posted in Untitled on 21 Apr, 2007 - 12:28 am

Hi guys‚ When i first got them 10 yrs ago‚ i tired real hot tea towels and that did help‚ but also cold packs do help as they will constrict the blood vessels - so by stopping the blood rushing through causing the pulsating‚ - can help the pain go somewhat
Oxygen i have tried in my docs surgery when i had an attack‚ didnt do anything‚ cool air is good as i go outside but doesnt stop them happening
i JUST want to find something that will work‚ gng to try Neuroutin - a nerve blocker drug - stops the nerves sending pain messages to the brain...will let u know in a few a days if it works as its mainly used for Epilespy‚ and there cld eb a link between CH and epilespy...being doing some more research for our site...