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mikeishopeless
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Hello my name is Mike and I have been dealing with clusters for about 10 years now. They started as a seasonal thing but 4 years ago they became chronic. With the most time passing without them being 3 days.
I usually wake up about 20 to 30 minutes after going to sleep with a burning needle like pain shooting straight through my left eye which has swollen shut and tears uncontrollably. Depending on how severe my nose runs like a faucet on one side. And chills and cold sweats are common in bas episodes. I sit alone in the dark and rock back and forth on the floor punching myself in the face and side of the head.
I have lost countless jobs over them because of either episodes at work or lack of restful sleep. I have no insurance and the Dr.s at the free clinic say they can not help me. At the moment I am not on any meds or using oxygen.
I have a few questions if you would be so kind to give me your opinions.
1) how do you keep a steady job? I know on a good day I get 2 hours of sleep tops
2) are there any non expensive ways to treat these things you could recommend?
3) why is it that Dr’s seem to try and act like this condition is something I’ll get used to?
Thank you for any advise or related information you can give me.
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BB
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Re: first post
« Reply #1 on: Oct 21st, 2006, 5:05am » |
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Hi Mike,
Sorry to hear you are having a rough time.
Lets see if we can lessen the load for you somehow.
I will try to answer your questions:
1- Hard to keep a steady job when the attacks are bad, once its better controlled it will be easier. It helps to have understanding and supportive employers though.
2- Melatonin at night starting from 3 mg to as high as 18 mg can help with sleep and may block night hits, they are relatively cheap, can also add Benadryl with it to improve sleeping time.
- Taurine and Kudzu are also relative cheap, the usual dose is 1 tablet 3 times a day.
- Ice is very cheap, put ice wrapped in wet towels on your face and neck. Somewhere on the neck there will be a swollen tender and hot spot, put ice on it and press down hard, it helps the pain a great deal.
- Oxygen is also cheap, if you cant get prescribed oxygen, you can get welders oxygen, ask Jonny when he comes around, he is the expert. Need to buy a non rebreather mask but they are cheap too and can be used for a long time.
- Hot /cold showers are very cheap, try it and see which one works better for you.
- Coffee is relatively cheap, drink double strength coffee at the start of an attack may abort one.
- Verapamil and lithium are not that expensive, one script lasts you a month. Ask your docs about them.
- Prednisone taper is also not expensive, lots of side effect but can work well in the short term to calm everything down.
- The expensive things are the triptans, ergotamines and fancy drugs such as Neutontin and Lyrica.
- Then there are other alternatives such as Shrooms and Seeds, I dont think they are too expensive either.
3- Drs struggle to deal with CH as most of them have not had much teaching/knowledge on the subject. Its a rare condition. You need to find those who specialises in headaches and/or clusters.
I suggest you spend some time reading as many threats and possible especially all the links on the left hand side.
Then post specific questions about your condition and see if someone can give you a more detailed answer.
Good luck with it all and take care, painfree wishes to you.
Annette
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Giovanni
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Re: first post
« Reply #2 on: Oct 21st, 2006, 6:57am » |
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I would go for disability with the employment thing. It might be a long road and you would probably be denied the first time. After the denial, I would obtain an attorney who specializes in disability.
It is hard to obtain employment with an "understanding" employer unless you've been there a long time and certainly obtaining a job with the headaches present is almost impossible.
I never did any of the above, but wished I did. I now have to be in some type of self employment scheme to survive.
Look through Floridian's Cluster headache book for some home remedies which in the long run ends up working as well as most of the RX you could obtain. http://www.med-owl.com/clusterheadaches/tiki-index.php?page=HomePage
Also, oxygen to your left works well for a lot of people. You can use welding oxygen if no insurance is available.
John 
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roy21302
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Re: first post
« Reply #3 on: Oct 21st, 2006, 12:15pm » |
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Mike
Welcome to the site, sorry your a fellow CH'er, the advice you have been given above is good and theres alot more to read on here, stick around keep posting I am sure you will find some help here. PF wishes to you don't give into it Cheers Roy 
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mikeishopeless
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Re: first post
« Reply #4 on: Oct 21st, 2006, 12:58pm » |
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Thank you all for the advice. I really am at my wits end.
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LeLimey
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Re: first post
« Reply #5 on: Oct 21st, 2006, 1:03pm » |
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Right Mike lets get you sorted.
What works for you?
Have you tried ice or heat? Strong coffee? Red Bull? O2?
All are cheap and available with or without insurance. (O2 we can talk about!)
There are other alternatives, Kudzu and www.clusterbusters.com
There is ALOT we can do to help. We'll get you much more pain free and that will solve the work situation.
You are NOT hopeless got it?! NOT NOT NOT NOT NEVER!
I won't allow you to think that for another minute, you might have lost hope but you are not without hope and I know we can help you.
Trust us.
Now lets get to work! Talk me through if any of the above have helped or have been tried.
Helen
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mikeishopeless
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Re: first post
« Reply #6 on: Oct 21st, 2006, 2:47pm » |
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I have tried both heat and cold and get no relief. Been given various dosages of verapimil , lithium, zomig and topamax. No relief from those either. Was using oxygen but saw no real effect of it. Have tried imitrex nasal spray and injectable, no help there either. Red bull and my double expresso addition don’t seem to touch them. Not familiar with kudzu.
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LeLimey
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Re: first post
« Reply #7 on: Oct 21st, 2006, 2:49pm » |
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how long do your hits last Mike?
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mikeishopeless
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Re: first post
« Reply #8 on: Oct 21st, 2006, 3:27pm » |
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On average they last 25 minutes, but some times as short as 15 minutes and as long as 2 and a half to 3 hours at the longest.
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LeLimey
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Re: first post
« Reply #9 on: Oct 21st, 2006, 3:45pm » |
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You poor sod, you're really going through the mill with it. The reason I asked is with shorter hits there is always the possibility of it being a related but rarer headache type, Paroxysmal Hemicrania which is characterised by being shorter in length than CH. The pain is the same but PH is very responsive to a drug called indometacin. That usually works in under 7 days so its sometimes worth a try.
If O2 didn't work it may be worth you trying it again. It can be the wrong type of mask or just not breathing it correctly.. or getting on it soon enough.
Read up about Kudzu on the meds boards and check out clusterbusters. I've tried many preventatives, busting has been he first thing to gve me any PF time. We'll help you with any questions you have and we'll support whatever choices you make. Our goal is to get you Pain Free and thats all okay?!
Look up Melatonin too.. thats terrific for night time hits. Several members here swear by it and its OTC and cheap too.
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mikeishopeless
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Re: first post
« Reply #10 on: Oct 21st, 2006, 4:09pm » |
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Thank you very much for your time and advice. I think I'll be here awhile.
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E-Double
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Re: first post
« Reply #12 on: Oct 21st, 2006, 5:39pm » |
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Since you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!)
It may help and it is natural with not too many side effects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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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.
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mikeishopeless
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Re: first post
« Reply #13 on: Oct 21st, 2006, 8:00pm » |
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Thanks for the suggestions. i'm gonna give the melatonin a try and will look into that herbal formula.
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Bethany1
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Re: first post
« Reply #14 on: Oct 21st, 2006, 8:12pm » |
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Mike, nice to meet ya.. hope these treatment suggestions work out for you... I just have to tell you that when I first saw your name, I thought wow, thats a wierd name because I thought it said...
Mike I Shop Less
as my tagline says... I am we todd did.
pf wishes to you-
Beth
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I am sofa king we todd did.
crack is wack
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mikeishopeless
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Re: first post
« Reply #15 on: Oct 22nd, 2006, 12:14am » |
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Ty for the welcome.
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nani
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Re: first post
« Reply #16 on: Oct 22nd, 2006, 1:39am » |
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on Oct 21st, 2006, 8:12pm, Bethany1 wrote:
Mike I Shop Less
as my tagline says... I am we todd did.
pf wishes to you-
Beth |
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Must be contagious, because I read it the same way. 
Mike...it's never hopeless, OK? You've been given lots of good advice, look into it. You already have new hope. You found the absolute best place to be if you suffer from CH. Stick around.
pain free wishes, nani
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BarbaraD
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Re: first post
« Reply #17 on: Oct 22nd, 2006, 4:09am » |
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Mike,
Welcome to Clusterville. Read Read Read... There's years of advice on this board.
Melatonin is great for the night. But you HAVE to STICK with it for a couple of weeks for it to get in your system. I take 9-12 mg at night and usually sleep thru the night. Makes fighting the daytime hits easier.
Red Bull and/or coffee works to abort if you get to it at the very start of an attack. (most of the time).
Ergotomine is cheaper than the triptans (my pills cost about $25 for 30).
As Annette says - most docs just don't know what to do. Read up on things that work and then "educate" your doc.
Verapamil has worked for a lot on this MB. It's relatively cheap.
Just remember, YOU have to find your magic bullet. Things that work for one won't work for someone else. It's a time of trial and error.
O2 seems to be the choice of most of us here.
Hope you have some pain free time soon.
Hugs BD
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What don't kill ya, Makes ya stonger!
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