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Topic: chronic clusters (Read 413 times) |
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markeydsl
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chronic clusters
« on: Jan 11th, 2005, 6:01am » |
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 is there anyone out there that is having chronic clusters? I am just suffering so muuuuch right now. I really don't have anyone around who can relate. I have these things about 4 or 5 times in every 24 hours and nothing is working. My doc has tried everything and still nothing is working. He told me that is pretty typical for the chronic ones.
I have been like this for almost a year and think that I am a rare case at best.
any one.....
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karma
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Re: chronic clusters
« Reply #1 on: Jan 11th, 2005, 6:37am » |
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Chronic by definition is No less than 14 consecutive days pain free in a one year period.
I know that doesn't help with what you are gonig through but to answer your question.
Yes, there are unfortunatly many others that are suffereing like you are.
The good news is that they are able to lead a fairly normal life with the right combination of medications. Many others willing to give the mushroom treatment a try have found near complete relief.
With out knowing what you mean by "having tried everything" I would guess that your doc. is not well informed about CH. Don't fret about this its not unusual. If he/she is willing to learn I would gather as much info from this site as possible and have the doc read up on what is being done to treat this malady. If he/she is not willing to learn then find other.
I suggest reading up on Oxygen use.
Give us a little more info on your history and someone will be along with more help.
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don
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Quote:No less than 14 consecutive days pain free in a one year period.
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30 days.
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markeydsl
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Re: chronic clusters
« Reply #3 on: Jan 11th, 2005, 7:58am » |
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Wellll I have tried O2 which used to work when I was episodic. now it just helps to lower the pain, which is by all means a good thing. I have also tried just about everything listed on this website for medications. imetrix, steriods in combination with kaylan (varapimil), now on zonegran, have tried all the triptans as a matter of fact. I have tried nasal applications of medications, as you can understand I have had these for 27 years, and as of yet the best treatment was alway O2, however since I have been chronic for over a year, (have not had more than 5 days without a cluster) and because they have been so frequent, we have not been able to find anything that touches them. Actually my Neuro doc is well versed, but has never treated any one with chronic. He is actually the person that suggested that I visit this website and the ouch website. He is actually the first Neuro doc, out of about 8 that I have had that seems to have a good understanding of cluster headaches.
as for the statement of no less than 14 days pain free, it sound as though you have that statement reversed, in reading on this website the information that I read was if you have had 14 consecutive days of cluster free in one year, then you are not considered chronic, However as I stated, I have had no more than 5 days at the most of releif in the past year and half actually. of course in the past 27 years, this is the first time that I have experienced a chronic phase of these headaches. I get 3 or 4 during my waking hours of the day, and then have 2 or 3 that wake me up at night. also the duration of the cluster is quite a bit longer than it used to be. they only used to last about 30 to 45 minutes, but now they can be as long as a couple of hours. On the kip scale I would say that I am usually about an 8 or 9. In the past i would usually have an episodic phase that would last several weeks, but as long as I had my O2 I would be fine, and the current clusters were easily aborted or delt with. then I would not need the O2 till the next time, although there I would keep it on hand as there could always be that random cluster that would show up out of the blue and then go away just as fast with out any other occurences. I have had in the past several years without a cluster, and just when I got my hopes up that they may have gone away, there they were again.
This is actually the first time that they have ever been like this so after years of trying differnt medications and all the trial and error, then after finding that O2 was my saving grace about 8 years ago, it now no longer seems to be the answer.
Well hope this was enough information for you. Let me know if you have any ideas, and if you might. tell me more about the mushrooms? This is one that I do not think that I have ever heard.
Thanks
markey
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Gator
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Re: chronic clusters
« Reply #4 on: Jan 11th, 2005, 8:00am » |
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Yup. About 20% of CH sufferers are chronic. There are quite a few here on this site, me being one of them. Sorry to hear you are having so much pain. I also get upwards of 5 hits per day. I've sent you some info in a private message. Hope it helps.
Gator
Editted to add: The IHS Classification Guide was revised in September 2004. Like Don said, it now states chronic is 30 or fewer consecutive pain free days.
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JJA
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Re: chronic clusters
« Reply #6 on: Jan 11th, 2005, 8:22am » |
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Read up on the clusterbuster site that don gave you. Here's an old thread with a lot of interesting reports. It's not always easy, but it can be very rewarding...
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1069040412;start=0
If you want shroom info, most of the shroom posts are on the Medications and Treatments Board. If you have a shroom specific question, ask it on that board with "shrooms" in the title. The "experts" will soon sweep in and answer all your questions.
Jesse
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Is it illegal because it's dangerous or is it dangerous because it's illegal? Our drug laws are ruining lives.
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unsolved1
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you're not alone. Chronic for over 4 yrs
Unsolved
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cat14
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Sorry to say I am also chronic, with my meds I have went 2 1/2 weeks painfree (well small scale ones) without my meds(lets not talk about it). I didn't see you mention the verapamil/lithium combo? Alot of us chronics are on that and that's what did it (so far) for me. Your doc will have to play with the dosage to find what right for you. I feel for you and I totally understand! Just don't give up looking for right meds. Hope I helped you alittle!
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Renee
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Re: chronic clusters
« Reply #9 on: Jan 11th, 2005, 9:03am » |
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Other than Zonegran and o2, are you currently taking anything else?
Many of us chronics here.
How much Zonegran are you taking?
o2 quit working for me until I went inpatient for DHE IV therapy over 3 days. Then the o2 started working again.
Hang with us..you are NOT alone!
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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nani
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Re: chronic clusters
« Reply #10 on: Jan 11th, 2005, 10:27am » |
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I'm a chronic, too. 5 years now. I am a very lucky chronic. as my "regular" hits are often low on the kip scale. Almost never higher than a k6. I do have occasional "episodes" that are much more intense.
I take verapamil, lithium and Neurontin as preventatives. I can't use triptans, so only oxygen to abort.
Look into all the options....you are definitely not alone.
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notseinfeld
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Re: chronic clusters
« Reply #11 on: Jan 11th, 2005, 10:53am » |
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For whom the hell rolls...chronic here as well. I'm on no medication at all, however.
Similar to Nani I get just one a day (plus iron) and usually aborted in +/- 4 minutes with o2. Nose will stuff up on rt side at least 8 times a day and lots of shadows, pulsatile vein in right temple.
My punishment for being an easy-going chronic is no alcohol and no television/movies. Both are triggers.
Hang in there Mark you WILL find something that works/ameliorates the rotten affliction.
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ZAIRA
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Re: chronic clusters
« Reply #12 on: Jan 11th, 2005, 10:58am » |
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Hello!
I’m chronic also. Currently, I am on verapamil 480mg/day and Lithium 600 mg/day with some results…
But when the meds don’t work anymore, in the Hospital doctors give me some sleeping draught, very powerful, used for people who have to have important operation and who need a “deap sleep”. I sleep for some days, the sleep is so deap that also the beast “sleep”….. 
Good luck, you're not alone....
Zaira
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markeydsl
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Re: chronic clusters
« Reply #13 on: Jan 11th, 2005, 12:10pm » |
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sorry for the long wait on a reply, I have had another one since my last posting. I have not been on the lithium and varapmil for sometime, but have tried that scenario. right now with the zonegran (anti sesiesure med) I have just recently taken a course of Depo (steriod) which gave me a couple of day of pain free, but they seemed to come back with a vengance. I actually just called my doc because the zonegran is something fairly new, and I had tried a lower dose of 100 Mg, but that was not working so I've been increased to 300 mg, of course slowly, however, the 100 mg was causing me to occationally have one or 2 hives here and there, but since I have increased the dose, I am getting them everywhere. When I talked with my doc, he indicated that after looking closer at the drug that it is a sulfide, which I just happen to be allergic to, so as of today I have to discontinue this drug and will probably go back to verapmil, unless of course he can find something else. I think the verapmil would be a good choice, and probably would have been in the past, however, I have never had a dosage of over 150 mg, I don't think that the previous doc was confident enough to increase the dosage, However I suspect that my new doc will not have an issue with this. I will just have to run it by him and see what we come up with.
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RichardN
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Re: chronic clusters
« Reply #14 on: Jan 11th, 2005, 12:12pm » |
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Welcome to your new family and a wealth of information and others who understand your pain.
There's hope here,
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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ccbiggsoo7
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Re: chronic clusters
« Reply #15 on: Jan 11th, 2005, 4:41pm » |
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up the verapamil and the lithium and maybe try neurontin to the mix, that is what I do when the lith and verapamil don't cut it. I have been chronic for 8 years and always have to adjust dosages of each of these meds , during bad cycle times usually Jan or Feb.
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chris
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Jonny
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on Jan 11th, 2005, 4:41pm, ccbiggsoo7 wrote:| up the verapamil and the lithium |
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Excelent advise, but one should consult with the Doc before doing so
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PrettyH8Machine
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Right with ya Markey.
17 1/2 years here with CH, going into my 7th year chronic. Nothing worked for the longest time until I tried Imitrex injections again in 2003. Now it is pretty hit and miss. Definitely talk with your Doc about trying the Verapamil / Lithium combo with o2 therapy. Lots of great information to the left in the buttons area.
Peace,
CD
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BarbaraD
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Re: chronic clusters
« Reply #18 on: Jan 12th, 2005, 5:49am » |
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Been chronic since 99 and have tried about everything known to medical science.
topamax was my miracle drug. Kept me in remission for a long time, then I started having side effects. It's about the same as zonogram (except it has a few different side effects). Might check with your neuro on that one. My neuro is having really good luck with it treating both CH and migraine pts.
O2 is still the old standby.
One thing you mentioned is that you'd already tried lithium and verap --- Don't know how long it's been, but it might work if you tried it again. The weird thing is - things that didn't work - will start working and things that have "always" worked - quit. There's no rhyme or reason - it just happens.
Nuther thing -- Renee's doc told her when doing O2 put your head down lower than your heart. That helps it work better. Might try that.
And then there's always the DHE-IV treatments. When I start getting hit over twice a day for a week or two -- I hit the DHE. Hate that stuff, but it breaks a bad cycle.
You didn't say if you'd tried the ergotomines (Cafergot). They've always worked better for me. If you do try the cafergot make sure they give you a script for phenergan for the nauseau that goes with them.
Hope you're PF soon. Hope we all are.....
Hugs BD
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karma
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Re: chronic clusters
« Reply #19 on: Jan 12th, 2005, 6:11am » |
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There is an interesting discussion on the meds and therapies section on using low dose Lithium only. "Lithium as a prophylactic"
It may be worth giving that a try before going with high doses.
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Renee
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Re: chronic clusters
« Reply #20 on: Jan 12th, 2005, 7:56am » |
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hives from Zonegran...yes that can happen.
Increase in dosages should be done by ONLY 25mg increments per WEEK. If not, a rash can develop.
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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