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Topic: Hello (Read 408 times) |
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JohnD
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First I wanted to say hello fellow CH 'ers. I am new to the board, but not CHs. I have had CH in chronic stages now for the past several years. Prior to that was episodic for about 15 years.
I know what we all go through, but I have not seen anyone with the exact same symptoms that I have. Besides the typical CH's (if they can be called typical) I have constant headaches on the left temple 90% of the time. About 4-5 in the KIP scale. I have not seen anyone else voice this complaint so I do not know if I am truely alone here.
I have done CAT scans/MRI's and done the whole triptan route w/o success.
Anyone else out there in the same boat?
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Richr8
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It's all about today...
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Hello John.
« Reply #1 on: Feb 20th, 2006, 1:10pm » |
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It sounds like you have quite a history with CH. I'd first like to say how glad I am that you found this site, and how sorry I am that you needed to find us. There is little doubt that most of your questions can be answered here and you won't find a more knowledgeable or helpful bunch of folks anywhere on this topic.
My suggestion to you is to read all that you can and follow the links on the right to gain insight to the latest treatments, including alternative treatments such as clusterbusters and Kudzuu. You will also see that there is a specific link for information on Oxygen use as many sufferers benefit from it's use as an abortive with few sided effects.
I'm sure someone willl be chiming in soon toanswer your specific question regarding the constant HA. Mine can go for many hours with shadowing, but that is the exception for me. Most of mine are individual attacks with remission of pain in between.
looking forward to hearing more form you and PFDAN.
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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JohnD
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Re: Hello
« Reply #2 on: Feb 20th, 2006, 1:48pm » |
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Thanks Rich for the warm welcome.
And yes, I have been browsing all the info. Most of it I have come across before, but some of it is new and I have my fingers crossed that it will bring some relief.
Of particular interest are the survey's of other folks with CHs & their meds. Seems I have been down the road that most folks have. It is alarming to see that so many "treatments" have poor success rates with others as well.
I wish everyone PFDAN...
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pfunk
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John,
Sorry you needed to find us but at the same time, welcome. I'm somewhat new to the cite myself but have benefitted from my new family tremendously. The best advice I can give to you is: LISTEN. These guys know what they're talking about and everyone of us is here to help on another. If you need help, ask for it. If you have advice, give it (not eveyone will always agree as every case is different) because that advice might help one person. If that happens, I think we're doing our job.
As for the temple pain, I don't seem to get that too much but I have sesere pain in the back of my neck that stays at about3-4 until that particular cycle stops. Hope some of this has helped. Make use of the menu board on the left. There are many tips that can help and many links for further info. Welcome again. Stay strong.
Pfunk 
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marlinsfan
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Re: Hello
« Reply #4 on: Feb 20th, 2006, 1:55pm » |
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Welcome to the nuthouse, John.
It sounds like you may have another type of headache to go along with CH. A few have migraines and CH, and sometimes battle both at the same time.
You say your non-CH headache is constant. It surely isn't there every minute of your life, so what do you mean by constant? Does it happen only when getting a CH hit? Give us a bit more.
PF wishes.
Jose
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Jasmyn
CH.com Alumnus
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Re: Hello
« Reply #5 on: Feb 20th, 2006, 2:13pm » |
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Hi John and welcome to the nut house.
All I know of that can feel like a HA on the one side are intense shadows. They are by no way as intense as a hit. They can be there before and after a CH hit. They can last sometimes hours, the pain can be compared to what I will call a normal headache.
Shadows for me is the constant nagging of my CH side, with various pain levels but not yet a full blown hit with eye, ear, nostril, teeth, brain and hair damage 
Especially after a few days of getting slammed a few times a day at Kip 8 -10 or after a very long and hard hit(of about 4 - 5 hours).
Then sometimes they are just like pressure but without real pain on the CH side.
I don't know if this is how you feel or if it answers your question.
Yip, we've all been through lots of meds but the biggest percentage swear by the O2 with the clustermax as abortive.
Hope to see you here often and PFDAN back at you 
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Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
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JohnD
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Re: Hello
« Reply #6 on: Feb 20th, 2006, 2:56pm » |
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Yeah I guess they can be called shadow's. The typically are after a bout. But having so few PF days it is hard to tell if where one shadow stops and another continues. So yes, 99% of the time I have a HA. If I am lucky then it is only a kip 4 or less. But other times it a 6-7 and sleep is not an option. I have many a sleepless night regardless of what I do.
I am defintely listening to everyone and taking it in. Cause as fellow sufferers, you know what it is like. I have found too many neurologist to be un-concerned and indifferent. Too many times I have heard from them "well, this drug helps most ch'ers". So I think that this community is more educated than 95% of the dr's on the subject.
Fortunately I have found a GP Dr. that is more than willing to help and I am going to see about getting both O2 and imitrex injections. (previously had tried the pills w/o any relief)
But thanks again to the warm welcome from all. It is a blessing to know there are others out there that are in the same boat as I and are willing to listen. (Not that I wish this beast on anyone.)
PFDAN to all..
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Dragnlance
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Re: Hello
« Reply #7 on: Feb 20th, 2006, 9:59pm » |
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Hey John,
I am chronic. did the catscans and boatloads of tests. Been misdiagnosed and given every pain killer known to man. I can pop immetrex like candy, for all the effect it had on my CH. I have tried any of the other triptins, so do not know if they work or not.
I am working with Kudzu. I can tell you, it helps. While it will not stop all the major hits, as I found out this weekend, but it has reduced most of the big ones and the length of time for most of the small ones.
Welcome home John
Dragnlance
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Charlotte
CH.com Alumnus
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Re: Hello
« Reply #8 on: Feb 21st, 2006, 4:03pm » |
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I have most right side. While the headache is not constant, the cycles seem to be. They varry, but right now it's every two hours. They get closer together and stronger, then eventually either just end or end in me feeling so bad I sleep for 2 days. Then sometimes I get up to two weeks PF and they start out again mildly and more than 4 hours apart. I never notice them until they hit the 3 hour apart mark.
A few days ago, I mixed 50 ml brandy w/50 mg imitrex and take a half teaspoon for some of the bad ones. There are so many that I don't think it would be safe to medicate each one so I ride most of them out. 
In between, I feel great. My immune system is good and I rarely get sick with colds or viruses, and I rarely miss work.
The thing about it is I've never met anyone else with clusters.
My doctor thinks I have migraines only and would not have a problem if I obeyed him. He hasn't heard a word I've said about cyclical in nature and I am now looking for a new doctor.
I do also have migraines - 3 hour ones, 8 hour ones, and 3-5 day ones, but they have must improved sine I got a less stressful job.
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Dragnlance
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Re: Hello
« Reply #9 on: Feb 21st, 2006, 4:19pm » |
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Welcome Char,
Sorry the pain drove you to find us, but you are home now.
Have you ever tried o2? check the links to the left. There is tons of info here, community and help. Please feel free to ask. The only dumb question is the one you keep to yourself.
Sorry to hear you are hurting.
Again, welcome home!
Dragn
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Margi
CH.com Alumnus
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Re: Hello
« Reply #10 on: Feb 21st, 2006, 4:20pm » |
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on Feb 21st, 2006, 4:03pm, Charlotte wrote:| A few days ago, I mixed 50 ml brandy w/50 mg imitrex and take a half teaspoon for some of the bad ones. |
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You do WHAT?? 
Sorry but....why waste the imitrex?
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http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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Jasmyn
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Re: Hello
« Reply #11 on: Feb 22nd, 2006, 3:54am » |
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Welcome Charlotte. Go and see another doc, it is better to get the correct medication and dosage.
PF wishes to you.
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Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
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RichardN
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Re: Hello
« Reply #12 on: Feb 24th, 2006, 1:56am » |
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Hi John and Welcome
Make sure you copy the 02 info and take to your doc and don't leave without a script. He needs to specify a 15 lpm regulator (most of us use 12-15 lpm to abort) and a non-rebreather mask (the one with the bag) or a Clustermask.
I have arterie blockage and high cholesterol, so cannot take triptans . . . 02 is my only abortive . . . and I can kill the beast in minutes if used early-on in the attack . . . a real miracle for 60-70% of us. Get the 02 . . . use it . . . and save the Imitrex for the attacks the 02 doesn't reach.
Water/water/water.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Charlotte
CH.com Alumnus
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Re: Hello
« Reply #13 on: Feb 24th, 2006, 3:48pm » |
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I got a new dr. Haven't had 1st appointment yet.
John, how is there Verapamil working for you?
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