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I am the cluster sufferer (Read 3937 times)
ehill2327
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I am the cluster sufferer
Sep 15th, 2013 at 5:52pm
 
Hello all, i am familiar with the site, however, just registered. I have turned here numerous times, for I have no where else to go. I am a 35 yo female and have cluster migraines.  I have been diagnosed with them for about 10 years, and have been seeing a doctor at the University at Penn.  No one understands, they just think migraine go lay down and stay away from light.  Ha! if they only knew my nightly ritual they would see a migraine and a cluster are completely different things.  They are worse than natural child birth, something I did with ease.  I would give birth 20 times over naturally then have another one of these beasts knock on my door.  I smashed my pinky toe almost severing it from dropping a drill on it, and yet I would do that again then suffer from this beast.

First let me say, you, the supporters are the best things in our lives.  Without you, we could never make it through. 

I am hoping that what I am about to post will help.  I am on a preventative and if you read the guest board I am the first post (or last post depending on how you look at it) there.  I have imitrex needles, and on indocin.  Verapamil, topamax, depakote and amitriptiline have been exhausted.  I used to take dihydroergotamine (dhe) needles, but due to heart issues in the family they are no longer an option.  I have an oxygen tank and is used more than I care to recall.

The reason for my post is to help the supporters-hopefully.  There are no 2 sufferers alike i am sure, however, this is my go to. 

When the beast breaks down your door and enters the home of the sufferer, keep in mind, you have the power to beat the beast.  Give your sufferer their pain medication, and then get them into a luke warm (slightly warm shower) and allow them to stand, sit, rock, or whatever their m.o. is; keep them there for about one minute, then slightly turn the water colder.  The reason for this, is most sufferers have a high body temperature, this is going to help cool that down.  After turning the water slightly colder, you have to find the strength to turn it all the way cold.  This is going to put the body into a sort of shock mode, however, it will make the body cold.  Wait for the sufferer to shiver, this is to ensure that the sufferers temp has come down.  Once the shivering has started, get the sufferer out of the shower, and place them on the oxygen if you have it, asap, try to keep them as lightly clothed as possible..ensuring that their temperature does not go up, keep sheets off of them. 

The next step is just as hard, however, effective, get a bowl of ice, and i mean fill it up, and put cold water in it.  Take a wash cloth and drench it in the cold water.  Wring it out and ONLY place the wash cloth on the sufferers pulse points while they are breathing their oxygen.  the pulse points are behind the knees, the inner side of the elbows, the back of the neck.  each pulse point redip the wash cloth making it cold, the wash cloth will more than likely be warm after the first pulse point.  do this until you feel that after each pulse point the wash cloth is not as hot as it was when you started. 

Let the sufferer now have a sheet, if they shiver thats ok, let them rest.  once they feel better (and believe me they will) do not let them get up and do things, this is common, move them slowly. 

I know this sounds cruel or maybe even corny, however, I am a female with clusters, who inherited them from my father.  He was a cluster sufferer for 40 years, he had them at the age of 22 and he went into remission approximately 2 years ago, he is currently 62 yo.  My mother did this to him, and when she did, it worked, as it has for me as well. Sometimes it was so severe that when I lived at home, my own father dunked me into our swimming pool at a temperature of 60 degrees, just as we were about to close it for the season.  Cruel, yes, effective, absolutely. 

My mother has taught my significant other this, and last week when I was in the middle of one, and i mean bad, face swelled and red eye tearing nose stuffed, as soon as this was done, the headache went away. 

I can't promise it will help for everyone, however, being a sufferer myself and having my father as one, this method has worked for us both.  It may not work for everyone.

I live on the east coast and we have had some crazy weather here, its been cooler here, down to low 50's upper 40's.  My beast is at bay on the outside of the door for now.

I just wish to thank you supporters for all that you do.  I hope this helps your fellow sufferers as it has helped me and my father.  Good luck to you all and I hope your sufferers stay pain free.   Smiley
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FrankF
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Re: I am the cluster sufferer
Reply #1 - Sep 15th, 2013 at 9:03pm
 
Hi Erica, I am glad you joined us.  Smiley

I hope you continue to try if oxygen will work for you. With the proper flow rate and a non-rebreather mask, it usually works wonders... nearly as good as imitrex injections.

I have used oxygen for years, and at first it didn't work due to being prescribed a flow rate that was too low, and improper masks. Even after 13 years I still toss out the nasal canullas and masks with the vents in the sides provided by the O2 delivery company... I think they should know better since my O2 is prescribed at 15 LPM, but they don't.

During my last cycle the doctor prescribed O2 at 6 LPM and I got tired of fighting him about ity so I bought my own 15 LPM regulator on EBAY. The O2 company didn't mind since 6 LPM "as required" is so open ended. Then bought my own non-rebreather mask here: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

The difference @ 15 LPM with a decent mask is like night and day. I finally get some relief!





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« Last Edit: Sep 15th, 2013 at 9:05pm by FrankF »  
 
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AussieBrian
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Re: I am the cluster sufferer
Reply #2 - Sep 15th, 2013 at 9:32pm
 
G'day Erica, and you can bet we all reckon our supporters are CHampions!

Regarding your oxygen regimen, it's the general opinion here that the trick is to get on it at the absolute first hint of a hit, and to stay there. Longer you leave it the less effective it's going to be and some say it even leads to rebounds.

Top left of your screen is our 'oxygen info' button which you may like to look at.

Three cheers for our supporters,

B
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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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Guiseppi
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Re: I am the cluster sufferer
Reply #3 - Sep 15th, 2013 at 9:34pm
 
Welcome Erica, thanks for sharing your story with us. I'd just like to echo what Frank said. I just got back from a "Clusterhead Convention" in Chicago. I watched a young couple hugging each other and crying because the husband had just aborted a headache with oxygen for the first time. Racer had a Cadillac set up, a big old "M" tank, a regulator that went to 45 LPM, and a heavy duty non re breather. This kid had given up on oxygen because it had never worked at all for him. With the right set-up, it worked like magic! Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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E-Double
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Re: I am the cluster sufferer
Reply #4 - Sep 15th, 2013 at 10:45pm
 
Ditto Joe.
I just got back from same convention and Racer hooked me up.
Killed my attack in literally 5 minutes if that.
I use 25lpm at home. This one i think was 60 and he said I was keeping up with it at or past 45.
It was delicious.
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I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.
Edoubleitk Edoubleitk1  
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ehill2327
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Re: I am the cluster sufferer
Reply #5 - Sep 19th, 2013 at 9:15pm
 
Thank you all for reaching out.  like I just told another gentlemen, I just got the old tank of oxygen back, not that plug in worthless junk! I've had clusters since I was 22 and that tank was my saving grace! I dont know what it is in that tank but it is a savior! thank you all for being who you are and being so supportive!!  Thank you to the spouses and those who help us!  I appreciate all of your feedback.
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Guiseppi
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Re: I am the cluster sufferer
Reply #6 - Sep 19th, 2013 at 10:48pm
 
I dont know what it is in that tank but it is a savior!

The magic elixir of life to CH'ers! Grin

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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