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chhudson
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update me on clusters
« on: May 25th, 2007, 5:07am » |
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Hello, I am Sheri. I am a mom of 3 kids 4,2,1 and have recently (last6 weeks or so) started to get cluster headaches again. I have be visiting the website when I can to re educate myself on them as I know I am probably my best advocate. It sure makes dealing with the clusters much easier knowing what they are than when no one understood what I was trying to tell them about the attacks I was having. It was such a anxiety relief to find this website and all the great information. So thanks to everyone who puts their time in!! Especially DJ?. Wow! YOu must be a saint.
I have not had clusters in 8-9 years, and from the looks of it, I am very very lucky! I hope I can go this long again. Good news is that I went to the Doctor right away, bad news is that he is a family practice and I am not confident he knows much about clusters, although he seems willing to work with me, I don't have the time to be a ginea pig. So I am wondering what you all have found to work. I have tried to look through the postings.
So far, if I catch it at the natorious neck pain, and get ice on within seconds wrapped around my head and drink water, lots, I sometimes can abort...
If It goes to far I can get an anti-inflamitory in and I can limit the headache to an hour (with ice and water) and a kip scale of a 5-6. Showers help (if I can get in the shower and the kids are sleeping).
My doc has me on Propanolol and prednizone. I was wondering if propanolol worked for anyone. I don't know much about chemistry or drugs. I see verapamil out there, don't know what it is but, does anyone recommend it?
I have an appointment next Tuesday so I want to go into my appointment "armed."
Also, any one had luck with chiropractic, any other supplements (natural...I am not big on this but am open), I don't smoke or drink, but is there other dietary triggers that are common or people have found make a big difference?
I know you all are extremely busy with life so I want you to know that any feedback or help you can give is extremely appreciated!!!! I thank you in advance!!
Sheri
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BarbaraD
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Re: update me on clusters
« Reply #1 on: May 25th, 2007, 7:47am » |
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Red Bull at the first sign (to abort)
O2 -- 15 liters with non rebreathable mask (about 15 min - it's either gonna work or not)
Melatonin at night (12-15 mg) - takes a couple of weeks to get in your system (OTC) helps get you thru the REM sleep.
Pred taper is good, but when it's over headaches usually hit back.
Verap is blood pressure med, but works well for a lot of folks here.
Imitrex, cafergot, lithium, heat, cold, exercise - no exercise -- everyone here has his/her meds and routine that works or doesn't work. We're all different.
The one thing "most" of us agree on right now is O2. It doesn't work every time, but for "most" of us is our first line of defense.
If I get a shadow, I grab the Red Bull and chug-a-lug it. The caffine and whatever that other stuff is in it usually will abort a hit (the key word being "usually" .
Hope it's a short cycle for you and you go another 9 years before the next one.
Hugs BD
PS as for as triggers go -- we haven't really come up with a common one yet -- I think it's the barometer, but that's just me.
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| « Last Edit: May 25th, 2007, 7:48am by BarbaraD » |
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burnt-toast
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Re: update me on clusters
« Reply #2 on: May 25th, 2007, 8:58am » |
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I wish there was and easy answer but there isn't - how CH manifests itself and effective methods for controlling it vary from person to person.
Verapamil is a very common CH drug but you will receive mixed responses - works for some but not others. I take 720mg Verapamil, 1200mg Lithium Carbonate and 9mg Melatonin daily. It reduces frequency/severity of attacks but is far from perfect.
Be careful with Prednisone if it is prescribed for long-term use. The side effects can be debilitating. Dosages tapered over 2 weeks as needed a few times a year is the most common application of this drug in treating CH -long term use is more commonly reserved to treat erious/life threatenting illnesses.
Ice or heat help some during attacks. I say or because most have to find out which one helps and if the other actually hurts.
The following links provide significant information on drug interaction, side effects and standard dosages. I strongly recomend researching/understanding meds. and knowing what to be alert for.
http://www.drugs.com/
http://www.nlm.nih.gov/medlineplus/druginformation.html
Working closely with your doc(s). and keeping accurate records of attacks, drugs/alternatives used and results will go a long way towards understanding your condition and identifying the most effective treatments.
Hopefully your cyles will continue to give you 8-9 year remissions and most of this won't have to become too important for you.
Best wishes,
Tom
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KJ_Hall
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Re: update me on clusters
« Reply #3 on: May 25th, 2007, 10:02am » |
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Hi Sheri,
I've been on Prednisone, Verapamil, Oxygen, etc.
I quit smoking about 6 months ago (for many reasons), but I still get the same clusters - so no change there.
The Verapamil worked for a long time, but this cycle it has not done anything yet to help and I don't know why. So I stopped taking it and basically, I just now take Vicodin or Darvocet as soon as it starts. I would sometimes still have to take the pain killers at the same time as the Verapamil and both drugs constipate you really bad. (I'm so sick of the side effects.)
Anyway, I think I'm going to try the Red Bull drink that I've heard so much chatter about lately and see if that helps.
Good luck and keep in touch!
KJ 
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sandie99
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Re: update me on clusters
« Reply #4 on: May 25th, 2007, 10:11am » |
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Sheri,
warm welcome!
I'm so sorry to hear that your ch is back. I'm one of those who trust Red Bull as soon as I feel ch coming and it helps.
What comes to diet... well, I have personally noticed that eating lots of fruits and vegetables help me. Not with ch per se, but eating sensibly makes me feel a lot more energetic, which means that dealing with the beast is bit easier.
Salty snacks are triggers for me occasionally, which means that I won't be eating too many potato chips or pop corns!
But, keep us posted what happends with your treatment. You have one huge advantage on your corner: you have been PF, which means that you can find your way back to the PF days and years again.
PF wishes,
Sanna
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"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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ClusterChuck
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The BEAST rises again, and again, and again, and .
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Re: update me on clusters
« Reply #5 on: May 25th, 2007, 12:46pm » |
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Welcome aboard, Sheri!
on May 25th, 2007, 5:07am, chhudson wrote:| Hello, I am Sheri. I am a mom of 3 kids 4,2,1 and have recently (last6 weeks or so) started to get cluster headaches again. |
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Whoohoo, girl, you got your hands FULL!!! I am so sorry you have the beast on top of it!
on May 25th, 2007, 5:07am, chhudson wrote:| I went to the Doctor right away, bad news is that he is a family practice and I am not confident he knows much about clusters, although he seems willing to work with me |
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That is a HUGE benifit, that he is willing to listen and learn. There are plenty who go to their Family Practitioner for care.
on May 25th, 2007, 5:07am, chhudson wrote:| I see verapamil out there, don't know what it is but, does anyone recommend it? |
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I HIGHLY recommend it! Even though it no longer works for me, it did for MANY years! It is probably the first medication of choice for most doctors, Just be aware that it takes 7 to 10 days to get into your system, and you may have to build up to a higher level. You will be started low, and built up, until it works.
on May 25th, 2007, 5:07am, chhudson wrote:| any one had luck with chiropractic |
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NO! At least not for relief from clusters.
And listen to Mom Barbara, above. She can be a cranky old broad, but she knows what she is talking about! 
The BEST tool is YOU! Your attitude! NEVER let the beast win. YOU are stronger than the beast! Learn about the beast. Learn the meds. Learn the tricks. Work WITH your doctor. YOU need to become an expert on this.
Oxygen Oxygen OXYGEN OXYGEN
Has anyone mentioned OXYGEN to you yet? LOL! MANY of us swear by it. It is safe, cheap, and easy to use. It is the safest abortive out there, and works for most of us. Get a prescription from your doctor for it. BUT, MAKE sure he sets it for up to 15 LPM (litre per minute) with a non-rebreather mask! It will not work otherwise. Don't let anyone tell you that is too high a flow rate!
Good luck, and welcome aboard!
Chuck
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Guiseppi
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Re: update me on clusters
« Reply #6 on: May 25th, 2007, 4:26pm » |
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I'm male, 47 and an episodic sufferer. When my cycle starts I go on a 2 week prednisone taper from 80mg to zero. I would be careful staying on pred for long periods it has some nasty side effects.
Anyway as soon as I start the prednisone I also start lithium, building up over about 7 days to 1200 mg a day. Just for comparions I weigh about 190 pounds. It takes about 2 weeks for the lithium levels to build up enough which is why I ude the short term prednisone taper.
Then I sit back and wait!!!!! The lithium blocks about 80-90% of the headaches dpending on how good I am about avoiding my triggers, which are, alcohol,,(almost an instantaneous hit when on cycle, no problem when I'm off cycle), sleep disruptions, extreme stress..(which is funny cuz a lot of people try and stay stressed..as soon as they relax they get hit!!!), and letting myself get really hungry.
The headaches that break thru I hit with oxygen, (did Chuck mention oxygen?? ) oral cafergot and when I'm really hurting I use the imitrex injectables.
The red bull energy drinks and coffee didn't work for me but are worth a try as they help a lot of people. Keep asking questions, a lot of great people here and one or two turds!!! Welcome to the nut house.
Guiseppi
PS my cycles usually run about 12 weeks but vary just to piss me off!
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chhudson
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Re: update me on clusters
« Reply #7 on: May 29th, 2007, 11:36am » |
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Thank you to everyone who gave me information. I am ready fo my doc appointment this afternoon. I think I am in week 8 of these things and at least been able to hold them to 1-3 headaches a day and have been able to abort them with ice (and steriods). We have one red bull in the house that I have been saving for a really bad attack. Thanks to everyone for all your help! Each response had something it that helped and your time is appreciated!!! Sheri
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Bob_Johnson
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Re: update me on clusters
« Reply #8 on: May 29th, 2007, 11:42am » |
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Big changes in the last decade!
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Brew
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Re: update me on clusters
« Reply #9 on: May 29th, 2007, 4:55pm » |
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on May 29th, 2007, 11:36am, chhudson wrote:| We have one red bull in the house that I have been saving for a really bad attack. |
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Only one problem with that - by the time you realize you're having "a really bad attack," it will be too late for Red Bull to be effective. If it's going to work, it's got to be taken at the first recognition of onset.
My recommendation would be for you to go buy a couple of 4-packs in order to fairly evaluate its effectiveness.
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| « Last Edit: May 29th, 2007, 4:56pm by Brew » |
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Redd
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Re: update me on clusters
« Reply #10 on: May 29th, 2007, 5:06pm » |
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ALDI's has a generic equvilent that is just as effective and 1/2 the price.
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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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