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canuck

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Posts posted by canuck

    neurologists

    in General Board

    Posted

    does anyone else have a neurologist who thinks CH is caused by smoking cigarettes?...he says to me ...u want the government to pay for your oxygen after u smoke all your life>>>>>>>>>grrrrrrrrrrrrrr....he told me i dont need an mri either im a clusterhead and that was that...  from a HEADACHE specialist wtf

    sodium oxybate

    in General Board

    Posted

    WeÂ’ve long known about the connection between sleep disorders and cluster.  But typical medication for sleep has not been the miracle solution for cluster.  But sodium oxybate may be the exception to the rule.

    Sodium oxybate is a type of drug known as a central nervous system depressant.  ItÂ’s used to help prevent daytime sleepiness in patients with narcolepsy (a sleep disorder – read about narcolepsy here).  Though we donÂ’t know exactly how it works, it does help with sleep patterns.

    The four patients in this long term study responded very well to the drug – their cluster attacks during the night drastically decreased and were less intense when they came.  Obviously, patients also slept better!

    The results are very positive, and thereÂ’s great hope that this will help many other cluster patients.  Though the study was small, it must be remembered that this is a rare condition and, again, the results were very promising in all four patients.

    Be sure to talk to your doctor about this option, and only get the drug from recognized sources, where it is pure and properly labelled

    BROMOCRIPTINE

    in General Board

    Posted

    I have not had an attack in 16 months and counting...My doc gave me bromocriptine no problem to use as a preventative I thought it would be difficult to get as people on clusterbusters seem to have a problem getting it... it is basically LSD without the hallucinations...I am going to dose for the first time with bromo and HOPE this is the answer and never get another attack...if u have a problem getting bromocriptine., but want to try it i will tell you how i got it perscribed!!!!!! HOPE FREINDS!!!!

    I saw a post on clusterbusters about a guy who claimed to be cured from cluster after being diagnosed and treated for prolactinoma or a pituitary adenoma... a small brain tumar that secretes prolactin and other hormones i had to look into it....the treatment for prolactinoma is BROMOCRIPTINE a derivative of LSD extremely close in chemical structure ..COINCIDENCE??? cluster headache has been a documented SYMPTOM of prolactinoma ....I talked to my family doc he agreed that it is a possibility...i then told him how effective lsd and shrooms have been for other sufferers and that i would like to try bromocriptine and said OK lets try it!!!!!! there was also a report that documents an ALARMING rate of suicide present with prolactinoma sufferers....Coincidence?????????..

    To clear things up i have not been cured YET the 16 months painfree is due to prolonged cycles....im overdue for another 4 months of HELL....so im really hoping this works ill keep yall posted... i still cant get an MRI..but i got me some bromo...wishing pain free days for all!!!!!!

    Back Pain

    in General Board

    Posted

    If U are a CHr and have Back Pain that feels like someone is constantly knuckling your spine...with pain extrudes to shoulder neck arm ? You may have fibromyalgia as well as CH,,,a Diagnosis will Change your life ... Meds work great for me!!!

    Hey Im Rob im a canuck

    in General Board

    Posted

    Thanks CH father.....I really appreciate your support...You are correct in assuming i am out of cycle....i will gather an arsenal....Can i get the  RC seeds at a health store? will this stop my whole cycle? How do i covert into active ingredient... i will try energy drinks too....I only have been takeing melitonin and magnesium casually on occasion ....

    Hey Im Rob im a canuck

    in General Board

    Posted

    Im glad u have a great family and are able to keep your stress down.....Im trying to do the same ..its hard when i seem completely normal to other people most of the time...and people including my friends and family have certain expectations for my life....and was ridiculed for quitting my last job and taking time to unwind...is it foolish for me to think that others can really understand?

    Hey Im Rob im a canuck

    in General Board

    Posted

    I would love to go to the conference but i am dead broke...I wanted to go last year too...i have lost job after job and my employers wont give me references because i missed to many days of work with ch ankle and fibro to say that life has been a struggle is a huge understatement....where is the conference this year?

    Hey Im Rob im a canuck

    in General Board

    Posted

    Thanks ch father and beejeeber and ch survivor ...I had only used triptans oral untill last cycle i tried o2 But was AFRAID so i ended up taking pills and o2....and for my next cycle i will have imetrex for the first time....I try and take magnesium and melitonin... and doc give verapamil

    I have not tried mush or busting????... is hard to find and costs more than FREE triptans...in chronic ch is there really 0 remission time? I cant imagine what it is like to NEVER get a break from the beast....I really feel for all you CHRONIC sufferers :'(

    Hey Im Rob im a canuck

    in General Board

    Posted

    Ive been waiting 4 months to find out....cpp is harder to get i am on provincial aid....BIG thanks for what u r doing for the CH community eh!!!!!!!

    I would like to be a Ginnie pig for CH research...but all the trials seem to b in American cities

    Hey Im Rob im a canuck

    in General Board

    Posted

    Ya Prices are ridiculous out here and in Kelowna Too....I just shared your documentary on fb....im just now after 16 17 years trying to educate myself and others of ch...im tired of feeling ashamed of myself and have lost the energy keep fighting... and myself now am applying for disability even though i am an episodic sufferer, i also have a dead anklebone and destroyed joint...i have been waiting to see if i Qualify for disability and just now found out about the fibromyalgia...its hard to get by on bare bones eh i truly hope u have some support out there

    Hey Im Rob im a canuck

    in General Board

    Posted

    Thanks Eh.....i have been pain free from cluster for 1.25 years...this will be only the second time i have had over a year in remission....but my cycles are lasting twice as long..grrrrr.... am i transitioning into chronic? thats a big move eh?.....Ive never been out to ontario...but have some friends out near niagra falls...do u miss vancouver?

    Hey Im Rob im a canuck

    in General Board

    Posted

    Im new to this site but not new to cluster Headaches...id like to meet another clusterhead one day.....are any of you near Kelowna BC Canada. I have recently been diagnosed with fibromyalgia...and am curious to see if anyone else has this nasty combo?

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