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Topic: clusterhead in cleveand.. (Read 1535 times) |
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coach_bill
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clusterhead in cleveand..
« on: Jan 20th, 2008, 11:00pm » |
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hello, in new to the board and im so glad i found someone eles who knows what this like. my wife feels bad and tries to help (god bless) but i didnt think anyone could understand this. but i found this site and im glad i did. ive been on the preds for 5 days now, got oxygen at home, just got imitrex shots (scary) but helpful. ive been thourgh the pills, never really helped it from going full killer, but the oxygen has seemed to help. anyway im looking to talk or chat or whatever, just wanted to see if there were any groups or anyone near cleveland. so let me know. coach bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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chewy
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Re: clusterhead in cleveand..
« Reply #1 on: Jan 20th, 2008, 11:03pm » |
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Using prednisoane without a preventative rarely produces the desired effect.
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Brew
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Re: clusterhead in cleveand..
« Reply #2 on: Jan 20th, 2008, 11:07pm » |
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If you were to lay out a list of everything you take for this, some of us might be able to look at it and tell you if it looks like the right approach (i.e., transitional, preventative, abortive).
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Redd
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Re: clusterhead in cleveand..
« Reply #3 on: Jan 20th, 2008, 11:10pm » |
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Welcome Bill,
It sounds like you at least have a doc that knows something about Ch. That's gift in itself.
Someone should be along soon to post the link to the current CH treatments. I haven't updated my links so the one I have is out-dated.
But Knowing you have gotten O2 is reassuring that you have a doc who's in the know, and probably willing to learn more.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Brew
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Re: clusterhead in cleveand..
« Reply #4 on: Jan 20th, 2008, 11:10pm » |
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on Jan 20th, 2008, 11:09pm, coach_bill wrote:| im really not good on pill takeing, but im willing to try just about anything at this point to keep them from coming back. anything. do u get them too.?? |
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Not good at pill taking? What does that mean?
Are you taking anything for this right now?
Yes, I've been suffering from CH since 1989. Have you been diagnosed by a neurologist?
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Always remember that you're unique, just like everyone else.
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chewy
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Re: clusterhead in cleveand..
« Reply #5 on: Jan 20th, 2008, 11:12pm » |
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What type of O2 mask are you using and what flow rate?
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Redd
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Re: clusterhead in cleveand..
« Reply #6 on: Jan 20th, 2008, 11:13pm » |
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on Jan 20th, 2008, 11:09pm, coach_bill wrote:| im really not good on pill takeing, but im willing to try just about anything at this point to keep them from coming back. anything. do u get them too.?? |
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The vast majority of us are sufferers, and then we also have our resident supporters who are a blessing to all of us.
If you read the intro page this site is dedicated to CH sufferers and supporters exclusively.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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chewy
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Re: clusterhead in cleveand..
« Reply #7 on: Jan 20th, 2008, 11:24pm » |
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First off it takes approx. 7-10 days for verapamil to become theraputic.
Secondly, predisone is normally prescribed as a taper beginning with high doses.
Thirdly, most use the O2 at a rate of 12-15, not 6.
Jelly? You dont know the name of it or its purpose?
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| « Last Edit: Jan 20th, 2008, 11:25pm by chewy » |
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Redd
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Re: clusterhead in cleveand..
« Reply #8 on: Jan 20th, 2008, 11:26pm » |
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on Jan 20th, 2008, 11:18pm, coach_bill wrote:| here we go. 1st trip he gave me a nasal spary called nasacort ag. worthless, if anthing it brought them on. he also gave me zomig 5mg. and put me on verapamile, although my bp was fine. well all that lasted about 3 days with nothing so i stoped all. then i went back. he gave me prednisoane 20mg lasted 12 days, also we had a oxygen tank delivered and thats when he game me imitrex. nothing during the 12 days, but about 5 days later boom, back again only at night this time for 3 days. so he put me back on preds for longer, told me to contuine the topamax and also he gave me some kinda jelly?? |
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Verapamil takes about 2 weeks in the system to become effective, and then it's a case by case basis how much is needed. It's not a BP thing, but the fact that the med is usefull for many to slow down the hits or lesen the kip levels.
There is no magic pill to stop this beast. It's about finding the right meds to halp YOU. No cure, but ways to keep the beast at bay as much as possible.
Then the people here keep the emotional aspect in check that it can be dealt with and still live a good life with the right additude.
Everyone has "something"...this is our "something" and we can let it rule us, or we rule it. The choice is ours.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Melissa
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Re: clusterhead in cleveand..
« Reply #9 on: Jan 20th, 2008, 11:27pm » |
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Hello coach bill,
First of all, the verapamil takes at least a couple weeks to work. With the oxygen, a regulator with at least a 15lpm flow rate with a nonrebreather mask is what is needed. It sounds good that you can get some relief at 8lpm, but could do better with that setup.
Please check out this link: http://www.ouch-us.org/chinfo1.htm Read as much as you can with the links on that page.
I'm sorry for your pain, but you have found the right place to arm yourself with the tools you need to fight it.
hugs,
mel
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chewy
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Re: clusterhead in cleveand..
« Reply #10 on: Jan 20th, 2008, 11:34pm » |
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Theres a button over there <------ that says "oxygen info"
Click it.
I'm guessing the jelly might have been lidocaine?
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| « Last Edit: Jan 20th, 2008, 11:36pm by chewy » |
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chewy
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Re: clusterhead in cleveand..
« Reply #11 on: Jan 20th, 2008, 11:42pm » |
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Your Doc sounds like he only knows the basics but is not yet fully educated on effective treatments. So now its up to you to bring him the neccesary info.
Everything you need to know is somewhere on this site. Start reading. Heres a good start:
http://www.plainboard.com/ch/chtherapy.pdf
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| « Last Edit: Jan 20th, 2008, 11:48pm by chewy » |
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chewy
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Re: clusterhead in cleveand..
« Reply #12 on: Jan 20th, 2008, 11:58pm » |
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Read the link I gave you.
Heres how I treat my cycles.
1) Start a predisone taper beginning with 80 Mg per day and taper down.
2) Simultaneously begin a preventative regimen of 480 Mg. of verapamil per day.
3) Imitrex injections of 3 Mg to abort breakthroughs. I use half of a vial with an insulin syringe.
4) 9mg of melatonin at night
If your going to use O2 you need a regulator that will admister up to 15 lpm through a non rebreather mask. (The one with the bag on it)
Nothing is carved in stone. You need to find treatment methods that are tailored to your needs.
P.S You need to educate your Doc.
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artonio7
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Re: clusterhead in cleveand..
« Reply #13 on: Jan 21st, 2008, 4:13am » |
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Howdy Coach Bill... nice to meet you. We are almost neighbors I live 1 hour and 45 minutes away in New Castle, pa. Let me know if you're ever out this way.
with warm regards,
Tony
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BarbaraD
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Re: clusterhead in cleveand..
« Reply #14 on: Jan 21st, 2008, 8:17am » |
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You said something about topamax. How much of that are you taking? It's been my miracle drug. I take 100mg at night and it usually keeps me pretty much in remission (nothing is perfect).
Red Bull energy drink (chug-a-lugged) at the onset of a hit works for a lot of us as an abort, but has to be done at the very onset. O2 at a high rate of flow (15 liters at least with a NON -REBREATHER mask) is great for a LOT of us.
Imitrex injections are the drug of choice for aborts around here - Personally I take cafergot (ergotomine) and swear by it, but that's a personal choice.
Everyone has to find his/her own magic cocktail that works for them BUT don't give up after two days -- some of these meds take a couple of weeks to get in your system. Melatonin at night (for the night hits) takes a couple of weeks to get in your system - I know I gave up twice before I figured that one out - now I swear by it.
It seems to be in our nature to want something that works NOW, but there's just not anything available right now, so we've all had to learn a little patience (easier said than done when you're hurting). Most of us have used the pred taper while the other meds have gotten in our system and it's worked great (not for all but for a big part of us).
Take a deep breath -- there's nothing that's gonna "cure" you (yet). Read what's on this site -- that's important. Take this stuff to your doc and discuss treatments with him. O2 should be your first line of defense with a vaso-constrictor as an abort (imitrex or ergotomine). Coffee or Red Bull at the first sign is a good first step and melatonin at bedtime.
Let us know what you're doing and how it's going. We're here to help.
Hugs BD
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chewy
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Re: clusterhead in cleveand..
« Reply #15 on: Jan 21st, 2008, 1:04pm » |
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on Jan 21st, 2008, 8:17am, BarbaraD wrote:
Melatonin at night (for the night hits) takes a couple of weeks to get in your system - I know I gave up twice before I figured that one out - now I swear by it.
Hugs BD |
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Can someone show me where that is documented. I find Melatonin to have an immediate effect. Maybe its because I want it to. I dont know.
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E-Double
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Re: clusterhead in cleveand..
« Reply #16 on: Jan 21st, 2008, 1:07pm » |
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Immediate effect!
Not the one I was looking for as I was extremely groggy at first then got used to it and it became the ultimate preventative for nocturnal attacks.
My magic # was 9mg
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I can't believe that I have to bang my
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But the blows they have just a little more
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Gonna take a breath and try again.
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chewy
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Re: clusterhead in cleveand..
« Reply #17 on: Jan 21st, 2008, 1:32pm » |
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I have heard the "build up in your system" a few times in relationship to Melatoninbut have never found that to be the case and have never seen any medical documentation of it.
I use it when out of cycle and 9mg is my magic bullet as well and it is immediate.
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DonnaH_again
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Re: clusterhead in cleveand..
« Reply #19 on: Jan 21st, 2008, 7:54pm » |
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Hi Bill and welcome to the family.
You take Melatonin about 1/2 hour before bedtime and to the best of my knowlege just during cycle when you need it. I will be corrected if wrong! 
I'm from the Cleveland area too......moved to southwest Florida in 1984. Raised in Brooklyn Height Village ( near Schaaf Road and Brookpark.......the green house area), got married and moved to Parma, bought the first house in Aurora and built the the second in Richfield. Went to Cuyahoga Height Schools.
How about you?
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chewy
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Re: clusterhead in cleveand..
« Reply #20 on: Jan 21st, 2008, 7:57pm » |
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I use the melatonin when out of cycle when I know I'll need a little help with a good nights sleep.
I take it just as Donna said, about 1/2 hour before bed.
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George_J
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Re: clusterhead in cleveand..
« Reply #21 on: Jan 21st, 2008, 8:15pm » |
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Welcome, Bill.
I too take melatonin during cycles, also 9 mg nightly, taken 1/2 hour to 1 hour before bedtime. Although I don't consider it a magic bullet, it has been effective at reducing the number of nighttime hits that I get. I occasionally take it when I am out of cycle as well.
By the way, my wife's older sister lives in Cleveland Heights. 
Best wishes,
George
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Charlie
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Re: clusterhead in cleveand..
« Reply #22 on: Jan 21st, 2008, 9:39pm » |
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Welcome Bill but I'm sorry you have to deal with this horror. These characters know what they are doing so pay some attention. I can add this technique that worked so well for me:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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nani
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Re: clusterhead in cleveand..
« Reply #23 on: Jan 22nd, 2008, 12:29am » |
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on Jan 21st, 2008, 1:04pm, chewy wrote:
Can someone show me where that is documented. I find Melatonin to have an immediate effect. Maybe its because I want it to. I dont know.
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Immediate effect. I believe that info came from posting about one person's experience with it. When I'm getting hammered at night, it makes a difference starting the first night I take it.
Hi coach bill. You've got some great info here.
Good luck and pain free wishes to you, nani
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coach_bill
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Re: clusterhead in cleveand..
« Reply #24 on: Jan 22nd, 2008, 4:53pm » |
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wow, im going to practice that,i dont know but maybe it could work. its just so hard to think of anything in that split moment but waking my wife to run to get that imitrex shot. right now im tapered down to 40mg of preds a day for 2 more, and topamax still.. so when im down to 20mg taper and topamax increace to 100mg then im gonna start going with the melatonin, because im scared to death of this shit coming back again. also, im working on getting the proper mask, i had to call my doctor and ask for him to call the medical supply place that sent me my tanks because it may need a perscription?? so now they have to check my INSURANCE. im getting pissed, and you people are helping me. im not laying down for this any more. but someone tell me this. even when i do beat his beast down into remmission, and i got all the tools ready, how can i keep from giving up that 1 attack that starts this whole fricken nightmare again!!!!
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| « Last Edit: Jan 22nd, 2008, 4:55pm by coach_bill » |
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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