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Topic: clusters? (Read 294 times) |
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G
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what do you hear? what do you say?
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Hi all,I started getting headaches when I was about 18.I remember sitting in a movie when one such headache occured,I spent the next two hours in a bathroom stall freaking out ,I finally emerged soaked from head to toe,I went to my doctor and was told they were tension headaches ,so tried so many different meds,none worked.I went to different specialists for years ,one would tell me tension another chronic sinus infections,migraines,tmj etc... I had cat scans ,x-rays,mri's,all the while trying anything as well as chewing up any and every pian killer I could find ,finally at the age of 25 I went to a neurologist at the cleveland clinic and was lucky to have a minor headache there,the doc gave me oxygen and it helped,he said I had clusterheadaches and prescribed verapamil.the nurse said she was there seven years and had never seen one.he had told me that they were believed to be caused by a lack of saratonin.anyway,the verapamil did not work and he upped and upped my dosage ,after a year or so I stopped taking the verapamil and pain killers all together,although I still used oxygen ,for it was helpful from time to time with minor headaches,It seemed I was always running out ,always afraid of knocking it down,I would carry it around if I could (pacing )until the headache got to intense and i had to go nuts.I get aura's all year long ,from specks of light to rips in time and space....like some portal were opening up  . So I guess my question is ...where does a cluster start and other headaches take off or is it just one big cluster,I used to think the cluster was the duller bonecrushing pain in my temple and the swollen red eye -stabbing pain along with discharge,tearing was a sinus headache .It seems that theres so many variations to pain .of course ...after I post this i'll think of ten other things i should have could have said  my pain started about a month ago and was pretty mild ,if clusters can be called mild? I would mainly wake up around three to four times a night ,I would feel the pain in my dream and if I ignored it I would wake to intense pain,so i sleep with the light on anymore so i can snap to attension and try to focus through and not lose control.for the past two weeks or so I still wake every night but,they are with me all day as well they are lasting about four plus hours a pop ,i've been popping blood vessels wich scares me ,as well as vomiting 6 times in the last week,so like 8 times in 17 years.the shadow you all talk about seems to be my only friend lol.wish i had a girl that was this faithful hehe. eeck ten pages later .....as i hold my head with one hand and type with the other...wow look at that finger go,sorry to get off track,my thoughts go a mile a min. in all directions.thanks for your time sincerly Gary
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LeLimey
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OUCH-US - Less "ME" and more "WE"
 
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Re: clusters?
« Reply #1 on: Nov 5th, 2006, 5:21am » |
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Hi Gary, its nice to meet you and I'm sorry it has to be here.
Why did you go off the verap and what dose were you at when you did?
Have you ever tried triptans such as Imitrex?
I'm glad you have o2, its my wonder "drug" and I love it.
Quote:| So I guess my question is ...where does a cluster start and other headaches take off or is it just one big cluster,I used to think the cluster was the duller bonecrushing pain in my temple and the swollen red eye -stabbing pain along with discharge,tearing was a sinus headache . |
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Cluster headaches are thought to be triggered by the hypothalamus, a tiny gland in your brain (I think this is why it is usually said that women don't get cluster headaches as, lets face it, it's not the only area in which men are controlled by a tiny gland is it?!  )
Anyway, male-bashing aside, When the hypothalamus kicks off it causes the blood vessels on the affected side of your head to swell by up to 20x their normal size which is why it is so excruciating.
The only way to relieve this pain is to constrict them ASAP so we use O2 which is a vaso constrictor and triptans which are drugs which do the same thing. The big difference is O2 only constricts blood vessels in your head whereas triptans constrict blood vessels around your entire body and so are unsuitable for anyone with a heart condition.
Other pain relief options do not control the pain of CH as they work in a completely different way.
There are non med options you may have read about such as strong coffee and red bull and its generic equivalents. Caffeine is our friend LOL Its a vaso constrictor and so chugging strong coffee (not sipping, you want to neck it as fast as you can) or high energy drinks can help alot of you get on them at the first sign of pain. These drinks are particularly effective as they also contain taurine which enhances the effect of the caffeine sort of like a turbo boost.
Do you have insurance at the moment? Are you under a neuro? there are other things I can suggest but I don't want to either bombard you or taunt you with stuff that might not be suitable so if you can tell us a bit more about you and your history we can help. There is LOADS we can tell you and a lot of support we can give too so stick around, we'll get you sorted!
Helen
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| « Last Edit: Nov 5th, 2006, 5:21am by LeLimey » |
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Charlotte
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I love YaBB 1G - SP1!
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Re: clusters?
« Reply #2 on: Nov 5th, 2006, 9:49am » |
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Sorry to meet you under these circumstances, but welcome aboard.
If you don't have a doc you can relate to, it's time to find one.
Were the popped blood vessels in you chin or somewhere else?
Charlotte
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G
New Board Newbie
what do you hear? what do you say?
Posts: 20
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Re: clusters?
« Reply #3 on: Nov 5th, 2006, 10:08pm » |
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Hi  verapamil was not working for me.I would still get them and my dose was increased many times.It's probably been about seven years and I don't recall the dosage  I stopped because I was afraid of side effects from prolonged use (liver and kidney dmg ) I was taking (chewing )many painkillers at that time and was fed up with drugs that did not work. I tried imitrex about two years ago for a few months ,but still found myself pulled over on the side of the road, in bathrooms and parking lots for hours in pain.I had two o2 bottles ,but they were discarded by a careless relative(take a aspirin and go lay down ..bonk)I need to get more soon,I was actually looking into it today. I've been drinking alot of coffee today and got a new coffee maker .I can't seem to shake the shadows(5-6-7kip is my guess) (me and my shadow..lalala) I tried using an ice-pack this morning ,but it did not go well,I will try again.I also bought some generic red bull that i have yet to try. Oh and as far as a gland controlling men?? that's up to the man I have no insurance , no neuro,no medical coverage ,no steady job  I could have one if I could shake these darn headaches,I'm just glad I did not drop out of school,I really hate having to try to explain to my prof.s about CH but I'm going to print out a bunch of those sheets from a link here and give it to them,what would be worse .....watching my A's go to f's and incompletes,but I informed the college of a possible CH problem before I started ...thank GOD!! The blood vessels that popped were on the right side of my head around my eye and nose,it concerns me because my headaches are on the left.They look like I tried self acupuncture. Thanks for your posts ,believe it or not just being on this site a little while has made my situation more barable and I don't feel so alone !!! sincerly,G
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LeLimey
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OUCH-US - Less "ME" and more "WE"
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Re: clusters?
« Reply #4 on: Nov 6th, 2006, 4:48am » |
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on Nov 5th, 2006, 10:08pm, G wrote:| ...believe it or not just being on this site a little while has made my situation more barable and I don't feel so alone !!! sincerly,G |
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Gary I do believe you - most of us feel exactly the same way. If it wasn't for this site and DJ ch'ers the world over would be having a much worse time of life.
Right we have a few things to talk about now I know a bit more!
O2 if you can get it is fantastic, you need to be breathing it at 15LPM with a non rebreather mask. You also need to get on it asap, same as with everything really.
There are a couple of sites which may be of help to you that were mentioned in previous editions of the OUCH US Newsletter
www.needymeds.com a resource for people who need help with the cost of meds.
There is also an article here by Matt Matlock in the June Issue entitled Free or greatly reduced Health Care which you should go and read. http://www.ouch-us.org/newsletters/05-2006/05-2006.pdf
Also look at the buttons on your left, the seventh one down is "Imitrex tip" and you might find that very useful too.
GSK Bridges to Access Program
http://www.bridgestoaccess.com/
GSK Prescription Assistance programs:
http://us.gsk.com/health/prescription_progs.htm
The last site, PPA will help you determine what programs you are eligible through both GSK and your state:
https://www.pparx.org/Intro.php
Thanks to Don and mcf69 for posting about those last three sites, I hope they're of some help to you.
There are also some non prescription options you may want to read about. Alot of people have had success with Kudzu and you'll find alot of threads on it here and also with ClusterBusting www.clusterbusters.com
I won't leave any stones unturned in getting info to you about all options so that you can make your mind up whats best for you.
Please ask all the questions you want, we want to help you get pain free as quickly as posible and get your life back to normal (if you find out what normal is can you tell me though? Please?!)
Talk at you soon
Helen
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G
New Board Newbie
what do you hear? what do you say?
Posts: 20
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Re: clusters?
« Reply #5 on: Nov 6th, 2006, 6:14am » |
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Thanks alot Helen, I will look into them later ....after i slam this pot of coffee and hopefully get to sleep,big test tonight and I still have homework to do  I wrote them down though
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