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Help for a newbie ... (Read 2637 times)
shadia
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Help for a newbie ...
Sep 6th, 2015 at 4:17pm
 
Cry I am hurting so bad... can not function . I am female ,50 years of age  . I was diagnosed two years ago as having CH but i did not believe my doctor i always thought is was tmj  because i i have a torn meniscus of my jaw so it causes jaw ,ear,eye and head pain. I also have fibromyalgia so everything hurts sometime. I had terrible headaches and stabbing pain in my ear. The headaches with last and last and i had excruciating pain at times during the day, still i was not a believer. At this moment i believe the Ch diagnosis, i am in pain in headache hell since the 1 september ,i am having up to 6 crises a day and in between the headache gets different ,trhobbing,pulsating like my brain is going to burst. I went on thursday to the hospital , they gave me 02 ,did not help . I have zomig 2.5 mg that melts on my tongue , takes at least 30 minutes to work , i take long acting morphine for my chonic pain 15 mg twice , i take ibuprofene 200 mg 2 pills at leat 3 times a day ,plus morphine 10 mg  if needed , wich is NEEDED badly, nothing helps. Do you ever at one point go to the emergency and tell them to put you in a coma? no but seriously do you ever have to go to the hospital? their is one good thing that is coming out of all of this ,it's creativity because i am thinking of fabricating a hat with ice inside or that we can freeze, neccessity is mother of invention. I am sorry if somtime the english is weird ,i am from Quebec and frech is my main language . Thank you for helping me out. My hat is off to all you sufferers ,because you have to be strong as hell to live with this thing.
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BobG
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Re: Help for a newbie ...
Reply #1 - Sep 6th, 2015 at 6:17pm
 
Sorry to hear you're in so much pain. I am not a doctor and can't diagnose but, to me, it is not cluster headache pain. I wouldn't even make a guess. Morphine will not stop cluster pain. Oxygen is good if used correctly. See the 'oxygen info' button on the left side of your screen. Yes, many of us have gone to the emergency room for help. There will be more folks along soon with their ideas so please stick around and keep reading.
And, your English is just fine. We have people here from Australia and they murder the English language.
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Hoppy
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Re: Help for a newbie ...
Reply #2 - Sep 6th, 2015 at 7:39pm
 
Hi and welcome,
I think your best bet is to check in with a headache specialist for a proper diagnosis, and to get the right meds if they are CH's your suffering from. In the meantime take the cluster quiz it might make things clearer. The link is to your left on this page.

Hoppy
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Mike NZ
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Oxygen rocks! D3 too!


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Re: Help for a newbie ...
Reply #3 - Sep 6th, 2015 at 9:07pm
 
Tu parle Anglias bien.

You need to be working with a headache specialist to ensure that you have the correct diagnosis and the appropriate treatments.

Using ibuprofen and morphine daily could be triggering rebound headaches. Pain killers are normally not the answer to frequent headaches and may well be making things worse.
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AussieBrian
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Re: Help for a newbie ...
Reply #4 - Sep 7th, 2015 at 8:08am
 
shadia wrote on Sep 6th, 2015 at 4:17pm:
... their is one good thing that is coming out of all of this ,it's creativity because i am thinking of fabricating a hat with ice inside or that we can freeze, neccessity is mother of invention.

Oh, the frozen hats we've created and used to great effect.

The most popular is the simplest, just a bag of frozen peas. I used one bag thrice daily for months and after everything got better again I cooked 'em up one evening as part of a dinner party and no-one even noticed, let alone died as a result.

Another little weapon against this monster is soaking and freezing baseball caps,  though I'm sure a beret would be just as effective and much more prettier.


A certain lady here at ch.com would reel in horror if anyone mentioned wearing a frozen banana, so I won't mention it.

(Also, BobG tells big porkie pies about us Aussies not talking dinkum English.)

If it works for you then go for it, ice and all, full steam ahead and damn the torpedoes,

Brian down under.





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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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shadia
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Re: Help for a newbie ...
Reply #5 - Sep 7th, 2015 at 10:46am
 
Cry when to the hospital.. had O2 no help, had a shot of toradol ,it helped for about 4 hres . Shadow pain i think you call it is there ,pulsating and just waiting to hit me with the harder stuff. I got a rx of immitrex injections because zomig does not help. my question is do you suffer and suffer till CH goes away on it's own or do you find relief . This is my fisrt very bad bout with it. Does anybody when in pain have trouble putting words together and cant seem to find words you need . Thnak you so much for your support you dont konow what it means to me right now.
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BarbaraD
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Re: Help for a newbie ...
Reply #6 - Sep 7th, 2015 at 11:24am
 
nope, the banana peels DO NOT WORK!  Smiley

But neither do narcotics ...

Read read read this site.. There's a wealth of information gathered over years and years FROM CH sufferers (a lot of whom did a LOT of research on CH).

O2 (used correctly - check left for O2 info) is the BEST abort we've come up with.

The D3 regimen is working wonders for a LOT of us (check it out - it's not going to hurt you).

Taking Melatonin before bedtime can often prevent NIGHT hits.. (I take 20 mg at night).

But then again, I say, read read read..

Kiss
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Callico
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Re: Help for a newbie ...
Reply #7 - Sep 7th, 2015 at 11:37am
 
I agee fully with what the others said.

I'm not fully in agreement with your diagnosis from what you have said, but I'm not a doctor, and I have not heard your full symptoms. Your use of morphine concerns me greatly, for I know how easily one can get hooked on it. Opiates will do nothing for CH, for they don't deal with the right receptors.

Take a look at this other thread, from the meds and treatments board. It is a very long thread, but the first ten pages will give you most of the info you need, and will cover what you need to start. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
Everything in it will be good for you, even beyond dealing with CH.

You said you tried O2 in the hospital, but you didn't mention flow rate or type of mask. These are very important factors, and since it was in a hospital setting I can almost guarantee you had a flow rate that was too low, and you probably had the wrong mask. You might have been lucky and had a doctor that knew something about CH, but I would be surprised. As was mentioned before, check out the oxygen info button on the left. The only qualifier I would put on it is that many of us find 15 lpm is not sufficient, and we need 25 lpm or higher to work best. When used properly, O2 is effective for well over 90% of clusterheads that use it.

Jerry
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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
Jerry Callison  
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shadia
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Re: Help for a newbie ...
Reply #8 - Sep 7th, 2015 at 11:49am
 
i read read read for about 2 days and this site prepared me to face the doctor , i did get O2 at 15litres per min with the right mask for 30 minutes... i am a nurse so i know alittle bit about medical language. I tried the O2 3 times now and the pian level did go down to 4 on the kip scale, but the shadows stay at that level too. I had to suggest things  to the that i learned here . I am seeing my family doctor thursday and will ask to see a specialist. Will try immitrex today if a cluster occurs.
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shadia
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Re: Help for a newbie ...
Reply #9 - Sep 7th, 2015 at 11:51am
 
oh  i forgot something i take opiates for chronic pain ,i have stenosis of my spine and herniated cervical and lombar disk and fibromyalgia, but tried it for Ch does not do anything but still have to take my long acting morphine for my chronic pain.
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dennisoc
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Re: Help for a newbie ...
Reply #10 - Nov 28th, 2015 at 9:41pm
 
i love the ice pack head thingy. having beat CH with shrooms fer over 10 years...and now they want to reoccur...i rely on an ice pack and o2 to kill those nasty once in a while recurrences...just last night.... as i was repossitioning my ice pack on different areas where it hurt the most neck, back of head, temple, jaw all the trigeminal nerve routes...and felt relief...i envisioned a mask...a "head ice pack"...that would surround and  just freeze the shit out of the entire trigeminal nerve...
I'd love to just strap that frozen total head freeze fucker on and huff my O2 and while away the pain.
Proceed.
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