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I found a new treatment that helps remove the pain (Read 1660 times)
Jeff Okada
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I found a new treatment that helps remove the pain
Aug 9th, 2018 at 9:06pm
 
I would like to keep this brief and just a simple explanation on some relief that helps me. And just so you know I had my first episode when i was 8 or 9 years old. 2 years ago i went through everything the doc could prescribe me including oxygen when can be sickening after everyday use.

I have found the simplest thing to elevate the pain, a cold air conditioner....

We all know when you have that 'feeling or ERK' in your temple when it will happen, for me i tend to panic and get to my oxygen/IBProfen/Tylonal combo.

When I feel it starting, I sit in front of a wall air conditional or even if I have to in my car. At night 1am or so, I had great success it slowly breating in through my nose the cold air from the air conditioner. If the pain has already gotten really bad, I have done the combo of oxygen and have the extremely cold air blow on the side of my head that I want to tear out due to the pain.

It may be expensive but I would pay anything to not go through this. Sometime I feel like I am getting oxygen poisoning since I need it so much and my cluster headaches rebound pretty badly.

I have cranked up to A/C in my office while working and drive home with all the air blowing at my face. Before I felt that air conditioners would actually trigger an episode but it seems to help me know. I let me face and head around my hairline get almost numbing.

We live in an older home with no attic so we have window A/C units. If you dont have this, try the car or getting a portable AC unit. Try sleeping with the AC cranked all the way up during the months when this is an issue.

I hope this helps someone.
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« Last Edit: Aug 9th, 2018 at 9:11pm by Jeff Okada »  
 
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AussieBrian
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Re: I found a new treatment that helps remove the pain
Reply #1 - Aug 9th, 2018 at 11:02pm
 
G'day Jeff,  welcome,  and it's great you've picked up the little trick about the air-con.  So many people swear by it and some go even further by soaking their hats in water and freezing them or sticking their heads in the snow.

A freezing shower is also known to help.

Even nicer still is that you've found something that works for yourself and have taken the time to pass it on in the hope of helping others.  That's what this place is all about and it's beaut to have you aboard.

Only better ahead,

Brian down under.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email meanytime at briandinkum@yahoo.com
 
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Mike NZ
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Re: I found a new treatment that helps remove the pain
Reply #2 - Aug 10th, 2018 at 2:25am
 
Hi and welcome Jeff

Great that you've got something which helps you kill off a CH. Over the years many people have found that cold can work for them, but we've also found that some people get the same benefit from a really hot shower or similar.

Do you have any CH preventive? Something like verapamil, lithium or topamax? These can cut down on how many CHs you get, which is always better than having to go through all of them even if you can kill it.

A lot of us have also had great success using vitamin D3. Read up about it at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

I'm a bit confused by your comments about "oxygen poisoning" and other similar comments. Pure oxygen is something that US Navy pilots breathe from take off to landing, as do NASA astronauts. If it was poisonous then they wouldn't be using it like that.

Are you using pure oxygen from O2 cylinders or are you using an oxygen machine / oxygen concentrator?

We have a load of O2 info at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Fire away with any questions too, we love to help.
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Culprit88
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Re: I found a new treatment that helps remove the pain
Reply #3 - Aug 12th, 2018 at 4:24am
 
Yeah that seems to work a little. Not breathing works the best for me, but I can only hold my breath for so long. I sleep in a chair every night to keep my head elavated to maintain a constant equilibrium of pressure. I found that lying down makes them increase in number and intensity. I did good for a long time on an illegal substance known as meth. I've had cluster headaches/ intense migraines pretty much 4 times a week since I can remember. I've been to so many doctors it's stupid and all I got out of them had been suppository medication because of puking non stop at first, then they went to topamax for prevention and maxalt to stop them but only six pills a month. Topamax didn't do much but the maxalt did stop them which kept me good for about two weeks a month. My insurance went through the roof at that point and could no longer afford it so I quit taking maxalt then they gave me something cheaper but it didn't work as good and so I gave up. I switched to a Sudafed ibuprofen cocktail and thoughts of suicide for a while but hell after 20 years that I can remember of the crap I decided I've made it this long and put suicide out of the options. Then meth happened ten years ago first little bit was because I enjoyed it and was just young and dumb then after I while I realized I hadn't had a migraine at all since starting it. I did a small bit a day until my dealer went to prison. Headaches came back until I found another dealer. Then they were gone again I hid it from everyone so long until my wife thought I was cheating because dealers have stupid schedules and middle of night leaving didn't make sense ( to me either) but that's when he was available so I went. See I am not saying it was right or something like that but it worked and I've been trying to find out why it worked. I did such a low dose that I was a fully functional normal person that slept at night lying down like a normal person and it was great. I had an occasional headache but nothing like it had been and once every six months was a blessing from God! I came clean to my wife what I had been up to (mistake) after she screamed at me in front of the neighborhood everyone knew too I said let's talk outside away from the kids (mistake) well the kids knew too because she was so loud and down right stupidly over the top about it then the neighbor told my boss about it cause you know totally his business to do (not a very nice person) I got tested and fired after 14 years there Fantastic, Not! Then my wife told my family, even better smh lol wow! Could it get worse yep then she moved out and took the 5 kids with her until I quit, which was quick but still my life went to shit so fast it made my head spin. I got raided for meth a month ago because the neighbor thought I was acting funny. Yep acting funny back to hell life migraines non stop up at all hours thinking about driving a screwdriver through my face. Needless to say I quit meth and am back to hell life. The raid was fun though lol I told them the truth and they laughed and said they were glad I quit, I'm Not, life sucks again! So now I sleep sitting up, take Sudafed ibuprofen cocktail every night and I'm over an air conditioning vent with no covers pretty much lost the wife anyway! Been a great year and I'm looking at forums for help yay. I found shocking my system works sometimes too, take a bucket and fill it with ice water and step into it and stay in it until you can't feel your feet anymore and stay until the burn happens and it helps some. Have a great one everyone!
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AussieBrian
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Re: I found a new treatment that helps remove the pain
Reply #4 - Aug 12th, 2018 at 11:58pm
 
Desperate times call for desperate measures,  Culprit,  and we might be able to assist with a range of regimens which could be a bit of help to you.

Especially in the bestest way ever to use Oxygen and also a course of vitamins that's been known to be a godsend for many.

Keep fighting the good fight and we'll help you any way we can,

Brian down under.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email meanytime at briandinkum@yahoo.com
 
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Mike NZ
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Re: I found a new treatment that helps remove the pain
Reply #5 - Aug 13th, 2018 at 2:33am
 
Hi and welcome Culprit

I'm sure that 99.9% of people who read your post would be aghast at the measures you took, but as Brian wrote so well with "desperate times call for desperate measures", only people who really understand CH have an idea of what it is really like to experience them.

Luckily there are other options out there that don't see you run the risk of prison and similar plus are no doubt a lot cheaper (I've zero idea how much the illegal options cost).

I'd strongly suggest that you read up about how many of us are using vitamin D3 very effectively, with many of us, including myself, going CH pain free for multiple years. Read up about it here - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Batch is the person who put this together and he does an amazing job in answering questions and helping people refine it where needed to work even better. He posts here often and you can also PM him.

Instead of Sudafed ibuprofen, which isn't likely to do too much as not even the strongest narcotic pain killers really touch the pain of a CH, try rapidly drinking an energy drink like Red Bull or Monster. The caffeine and taurine in them act to reduce the intensity and duration of a CH.

As Brian also mentioned, read up about oxygen which can kill a CH off in a few minutes. There is lots to read at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Read up all you can here, we know and understand CH all too well from very personal experience.

I'm really hoping that you can learn enough to make an impact on your CH and help you get back to a life not dominated by CH.

Any questions, just shout out.
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Culprit88
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Re: I found a new treatment that helps remove the pain
Reply #6 - Aug 15th, 2018 at 1:56am
 
Bout 25 bucks a week at the dose I did, but I do Sudafed ibuprofen cocktail before I go to sleep I've been out of Sudafed for a bit now after the raid at my house I haven't had the nerve to buy Sudafed since people make meth out of it and I'm in the system now, I think. I've noticed when I wake up and my head/face feels like exploding and every slight movement of my eyeballs stem is cutting through my brain that my one nostril is slightly plugged and dripping normally so I use Sudafed because it works the best at stopping that from happening and the ibuprofen is just a back up so it's already in my system as a backup if I take more. It worked for a long time previously however it elevated my blood pressure so I was put on a blood pressure medication too. I had a prescription for Sudafed but I quit it after the raid. And since doing so my blood pressure is down and I don't need the medication anymore. So I've been searching for new options. And I can say this last month has been hell again for me.
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Jeff Okada
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Re: I found a new treatment that helps remove the pain
Reply #7 - Dec 16th, 2019 at 2:59am
 
After almost 2 years. It's back. It has been so bad my wife is crying because my pain has almost confirmed the name aka Suicide Headache. .

I don't have oxygen tanks left. I have found a couple new things I have found for myself I would like to share.

I purchased an Oxygen Concentrator from Amazon. It cost around $300. It provides about 90% oxylgen flow consistently for about 3 hours. It does help.mitigate the pain and allows you to fall asleep with it on with a built in auto-off timer.

I do this with my combination d3 vitamin, 1600 ibprofen and 1500 tylonal when I feel the onset coming

Another thing I noticed, twisting a good size chunk of tissue like when you have a bloody nose when I was a kid and have it apply pressure to the inside sinus cavity helps tremendously. I will leave this in until the mucus build up and replace until the morning. 

I'll tear the tissue enough so it doesn't stick out of my nose so I can use the nasal tube that comes with the oxygen machine at the same time.

Sorry for any typos I didn't catch. Typing from phone is a pain.. hmm caught my self. Lol pain.. shit. This pain this time around I would have to says was one of the worst.

My twitching and convulsing was tough but making sure my kids done here me and watching my wife hopeless and crying was worse.

I'm on day 2 with no full blown Cluster pain.

As you all know with this pain, even a slight feeling sets me into panic. Scared to leave the house, always making sure to atleave have all my pills ready.

Hope this help anyone. The $300 for the concentrator is worth it.

-jeff
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« Last Edit: Dec 16th, 2019 at 3:03am by Jeff Okada »  
 
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AussieBrian
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Re: I found a new treatment that helps remove the pain
Reply #8 - Dec 16th, 2019 at 4:01am
 
G'day Jeff, it's great to know you're still with us, and please tell your dear wife that we truly understand how much she's suffering in watching you live this nightmare without being able to do a damned thing to make it stop.

Around here we call people like her Supporters and we treat them as gold, even though they are worth so much more. To this day I can't begin to understand how they could possibly stay by us, but they do, and we must truly love them all the more for it.

Please tell her that we really do know what she's going through and she can talk to any one of us any time. We're here to help because we care.

I still reckon our Supporters do it tougher than we do,

Brian in Oz.



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My name is Brian. I'm a ClusterHead and I'm here to help. Email meanytime at briandinkum@yahoo.com
 
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Jeff Okada
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Re: I found a new treatment that helps remove the pain
Reply #9 - Dec 20th, 2019 at 1:28pm
 
Thank you for the kind words...

Hit me again last night.  Sigh....

When I think back to my 20's, it was definitely not as bad.  My wife had a sample of CBD oil from the mail which I'm not a fan of.  It put me to sleep but not after 3.5 hours.  I at least slept.  Taking over 30 ibfrofen and tylonal definitely is not good for my stomach when in the panic.

I'm starting to see people's post on regiments that are no longer working for them.  I still have hope there will be something.

Thanks again for the support.
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Jeff Okada
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Re: I found a new treatment that helps remove the pain
Reply #10 - Dec 20th, 2019 at 8:01pm
 
Has anyone read up on Hortons syndrome?

Is this what we may have?

I definitely feel a swelling behind my eye.  One of my episodes, my eyes was almost completely red and swollen and tearing.  Actually this was again last night.

But light all research, no cause or concrete treatments.
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