rhizz Posted November 17, 2010 Share Posted November 17, 2010 OK now I'm learning all the terminology i would like to ask. i've been getting a shadow (bruised/pressure) on my left eye (cluster side) non stop since october. from the moment i wake. i'll still get attacks but even when the attack has faided its still there. does anybody else have this constant shadow?? can i stop it some how. i know its not enough to take meds for it i only try to take meds when its bad. its just an annoying feeling it being there non-stop i have chronic clusters btw Quote Link to comment Share on other sites More sharing options...
Napoli Posted November 17, 2010 Share Posted November 17, 2010 try energy drinks. they help me chase away shadows or light attacks pretty efficiently. Quote Link to comment Share on other sites More sharing options...
Guest Posted November 17, 2010 Share Posted November 17, 2010 second the enery drinks, coffee,,ect. the bb How do you define chronic,may I ask? Quote Link to comment Share on other sites More sharing options...
rhizz Posted November 18, 2010 Author Share Posted November 18, 2010 i will try the energy drinks thank you although i love coffee i've found most trigger my attacks :-( well i cant really sorry i dont know much about this i've had sme useless docs in last 2 years but i went to my doc recently told me its now chronic. i've had this shadow non stop 24 hours since october :-( im currently take sumultrapan tablets 100mg and amitriptyline 10mg i also have a spare imigran nasal spray as a back up but only 1 as doc doesnt want me on to much sumultrapan :-( Quote Link to comment Share on other sites More sharing options...
Guest Posted November 18, 2010 Share Posted November 18, 2010 Gee rhizz! (Gee whiz) heee ..he...he I couldn't help myself. Most CH'ers prefer the imitrex stat dose injector(imigran for you limey's). You get better results with aborting. Chronic is defined as CH continuously for at least 12 months with no break longer than 14 days. The longest I went ever in 31 years is 18 months, not chronic but a dammmmed long episode. Shadows last between attacks the longest break I had with a shadow was 3 to 4 day's then another set of attacks. I hope your not chronic but episodic. The shadow is not a CH and just means your still in an episode. I do not know all the facts and I am not questioning your statement, just trying to clear up and define the terminology. i will try the energy drinks thank you although i love coffee i've found most trigger my attacks Be careful with the caffeine. After about 2000 mg a day, they do trigger the HA. Quote Link to comment Share on other sites More sharing options...
rhizz Posted November 18, 2010 Author Share Posted November 18, 2010 lmao :-) i have enquired with my doctor about the injections but he's currently stopped my sumultrapan till after the MRI (28th this month) so we will discuss after then on which i could use. im not happy with his decision to be honest its not fair i have to endure an attack (not that the sumultrapan was that good anyway) my first cycle lasted about 4 months (almost 2 a day) then i had a few months with no shadowing or attacks. this shadowing has just come up since October with the odd attack. i understand completely what you mean, after have no info at all in 2 years about this condition im now being flooded with so much. its fantastic to know there is others i can talk to now. I MISS DRINKING COFFEE lolol i used to drink it all the time (during the cold weather) but i cant more then 1 or 2 small cups now :-( Quote Link to comment Share on other sites More sharing options...
Guest Posted November 18, 2010 Share Posted November 18, 2010 my first cycle lasted about 4 months (almost 2 a day) then i had a few months with no shadowing or attacks. this shadowing has just come up since October with the odd attack. Seems to me that would be two episodes. I had in the past for about 10 years straight, two episodes a year, a month on either side of the winter and summer solstice. Then a long episode then nothing for two years then back.These things change so it's hard to keep up with episodic/chronic. Chronic by definition is a bad bad thing. I'm still hoping your not. Not that being episodic with intractable hits daily is a picnic : the bb Quote Link to comment Share on other sites More sharing options...
rhizz Posted November 19, 2010 Author Share Posted November 19, 2010 that's sounds terrible im sorry you've had this for so long. this cycle started on the left side (my usual) but last 2 weeks its hit my right side. i wasn't sure what to think at first. i cant wait to speak to the neurologist i can imagine how much more helpful he will be compared to my gp. i will be more comfortable talking to someone without feeling like they think im exaggerating. Quote Link to comment Share on other sites More sharing options...
alleyoop Posted November 19, 2010 Share Posted November 19, 2010 Chronic by definition is a bad bad thing. Maybe so, but it's all I have ever known. I was diagnosed chronic from day 1 over ten years ago. Within a couple of years, I was diagnosed with refractory CCH, and surgery was the next alternative offered to me. It was the catalyst that made me pro-active as I turned to the internet for answers. Clusterheadaches.com led me to Clusterbusters, and the rest is pretty much history. Although I am not completely CH free, I now feel that I have control of my life, instead of CH having control. Read what tommyD posted under "Cluterbusters Files." Bob Quote Link to comment Share on other sites More sharing options...
rhizz Posted November 19, 2010 Author Share Posted November 19, 2010 thank you :-) i have been reading that section its very helpful. im so sorry about your condition. i suppose there's always a bad thing behind good thing. i joined the site to help me but i now read how bad others suffer and its hard to read it knowing you cant do anything to help.the only thing i suppose is that we're all here for each other and thats fantastic im still a little worried about the surgery option i think i may try everything else first lol. Quote Link to comment Share on other sites More sharing options...
alleyoop Posted November 19, 2010 Share Posted November 19, 2010 thank you :-) i have been reading that section its very helpful. im so sorry about your condition. i suppose there's always a bad thing behind good thing. i joined the site to help me but i now read how bad others suffer and its hard to read it knowing you cant do anything to help.the only thing i suppose is that we're all here for each other and thats fantastic im still a little worried about the surgery option i think i may try everything else first lol. I turned down the surgery option years ago. lol I became pro-active and have never looked back. Although still technically chronic, for the past two plus years, I have only had to endure 1 to 3 low level hits per week. When I do get one, it is always in the evening around 8:00 to 10:00, and easily aborted with 02. In fact, they are so mild as to be hard to even classify as CH, except for the ipsilateral rhinorrhea and lacrimation (one sided runny nose and tears). I can easily skip the 02 and put up with the mild discomfort. Before becoming pro-active, I suffered between 3 to 5 high kippers daily, averaging 2 to 3 hours each. So maybe now you can see why I now feel that I have my life back. Bob Quote Link to comment Share on other sites More sharing options...
rhizz Posted November 20, 2010 Author Share Posted November 20, 2010 oh wow thats fantastic im so glad for you :-) Quote Link to comment Share on other sites More sharing options...
Guest Posted November 20, 2010 Share Posted November 20, 2010 that's sounds terrible im sorry you've had this for so long. Ya, well having this so long let's me pass on stuff to younger sufferers. Don't feel sorry, but thanks, I am one headache smashing headbanger. My last episode, was a 5 month bout. I used RC,shrooms,O2,coffee; but no steroids,demerol,brain scramblers of any kind;no ER visits, lost 1/2 day of work; and just 4 trex shots. And that was a bad one, previously on several episodes, RC, and shrooms stopped them dead. [smiley=2vrolijk_08.gif] I started using shrooms in 05 and despite the side effects,it's the first choice episode and HA abortive. As far as I'm concerned until the new stuff comes out I'm set. You will find the best ticket for you, if you listen to Bob and get proactive,study,donate to MAPS,clusterbusters,ect. The more you know about this condition the better. all the best the bb PS: I know of several that have had this many more years than I, started at 19, 31years, I be middle aged now at 50. ;D Quote Link to comment Share on other sites More sharing options...
Bonkers Posted November 20, 2010 Share Posted November 20, 2010 Hi rhizz, My 23-year-old kid's had 'em since he was 12. Turned chronic when he was 22. Busted 1st time with LSD about 1-1/2 years ago after reading an article in Neurology journal. That 1st bust gave him 5 completely PF days. A few months after that we found this forum and began busting with Psilocybe mushrooms. We're refining his dosing regimen as he continues to improve. He now has a job and will be returning to school. He's almost got his life back. It can happen to you. Good luck! Ron  Quote Link to comment Share on other sites More sharing options...
rhizz Posted November 20, 2010 Author Share Posted November 20, 2010 @ the bb: im glad you got your life back. im finding it hard nowdays before i never realised how much this could effect my life but now im at college i realise its so hard. i've missed so many day recently :-( @bonkers: oh wow fantastic im so glad for him. im so wary and scared about shrooms and lsd. lol i know i shouldnt as its given positive results. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted November 20, 2010 Share Posted November 20, 2010 Don't be wary or scared. Nothing good will come from it. Mushrooms saved my life...not a doubt about it. NOT A DOUBT. The end does justify the means. Oxygen and mushrooms keep me sane....mostly Dan Quote Link to comment Share on other sites More sharing options...
Bonkers Posted November 20, 2010 Share Posted November 20, 2010 You're sane, Hipshot?? Maybe if you just keep believing that it'll come true. Yeah, right, ha ha ha.... Quote Link to comment Share on other sites More sharing options...
rhizz Posted November 20, 2010 Author Share Posted November 20, 2010 it is worth concidering i just didnt think before that anything like that could help mind you i smoke the odd spliff and it tones it down a little ..sometimes depending on how strong it is. has anybody spoke about marijuana use? Quote Link to comment Share on other sites More sharing options...
MattyAA Posted November 20, 2010 Share Posted November 20, 2010 Hey Rhizz, I am having also constant 'shadows' that switch between left/right eyeballs and sometimes venture to temples or teet/jaw between my episodes I have had my 24h shadows since 2 years now, I tried redbulls but they didnt help, what helped me was very warm bags of peas, hot shower or when I dried my hair and I wandered over area with hairdryer I could feel burning sensation but stop of shadow. Hope it helps somehow. Quote Link to comment Share on other sites More sharing options...
rhizz Posted November 20, 2010 Author Share Posted November 20, 2010 ah interesting i will deffinatly try those thank you Quote Link to comment Share on other sites More sharing options...
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