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Cluster Headache Help and Support >> Cluster Headache Specific >> They are Back Again....
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Message started by Laksh on Dec 6th, 2011 at 2:09pm

Title: They are Back Again....
Post by Laksh on Dec 6th, 2011 at 2:09pm
Mine just started about a week ago and I am feeling terrible.... Starts anytime.... While I am sleeping.... While watching tv, a wedding, playing.... It feels embarrassing if it starts in front of friends as they start there perceptions and start judging me on that.... When it starts, I just feel as I need help from someone who can shoot me right in my head....  :'( :'(

Feb 2005 was the first time I had them and then they were back in 2008.... Now they are back in 2011.

I need help friends....

Laksh

Title: Re: They are Back Again....
Post by Mike NZ on Dec 6th, 2011 at 2:19pm
How are you fixed up with things like a preventive (verapamil, lithium or similar) and an abortive (oxygen, imitrex, etc.)?

Have you read up about Batch's vitamin d approach? - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Other things like energy drinks such as Red Bull with caffeine and taurine?

Quite a lot of things will have changed since 2008 so read up, ask questions and take advantage of all that we've learnt in the last few years.

Hoping that you can get to grips with your CHs as it isn't fun at all when they return.

Title: Re: They are Back Again....
Post by Tate on Dec 6th, 2011 at 8:31pm
Hi there,

I feel for you as I know how the anxiety of the cycle can really get to you...never mind the pain!

There is so much information here. I am learning so much myself. Read and ask questions...and know that there are so many available to be of great support to you.

You are not alone. You are among friends!

Here anytime. :)

Tate :) :)

Title: Re: They are Back Again....
Post by Guiseppi on Dec 7th, 2011 at 8:16am
Welcome to the board Laksh. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Title: Re: They are Back Again....
Post by LasVegas on Dec 9th, 2011 at 10:23am
Sounds like a every other 3 yr pattern.  High flow o2 should be your #1 investment.  Sorry to read you started another cycle, we are all understanding your pain and are here for your support.  Lots to read here since 2008....energy drinks, high flow o2, anti-inflammatories, etc. 

Title: Re: They are Back Again....
Post by crystal so tired oh ch on Dec 11th, 2011 at 4:23pm
i just started having ch again after 2 yrs, and dr.s never seem to be able to treat them accordingly i have had everything under the sun to abort them and prevent them will you guys share some ideas with me please ?? :'( :'( :'( :'(

Title: Re: They are Back Again....
Post by Traveller on Dec 11th, 2011 at 7:41pm
Just had my first CH attack ever at age 56.  A good neuro put me on Indocin and Verapamil with Zomig spray as an abortive.  After 3 difficiult weeks, the last 4 have been more than tolerable and I am feeling as if things are winding down at this point.  This combination worked wonders for me - hope you find something that can work for you.

Title: Re: They are Back Again....
Post by kannah on Dec 14th, 2011 at 10:21pm
Mine started about 2 weeks ago as well, have an appointment tomorrow with a Nero, last time he gave me a occipital nerve block which really didnt work for me I think it was to early in the season, going to ask for some o2 and a mask hope I get it Hang in there Bro this too shall pass

Title: Re: They are Back Again....
Post by Gundude on Dec 15th, 2011 at 6:43am
Looks like I'm not the only one on a 3 year rotation....

Exactly 3 years from my last December round... 1.5 years from my April round...

Title: Re: They are Back Again....
Post by Guiseppi on Dec 15th, 2011 at 4:51pm
Welcome to the board Kannah. Is your neuro a headache specialist? We find even most neuros aren't that up to date on CH. Read everything you can here and see how open minded he is to what's here. Wishing you luck with the neuro and some pain free time soon.

Joe

Title: Re: They are Back Again....
Post by kannah on Dec 16th, 2011 at 8:45am
Thanks Joe
Not sure if he is a specialist on CH he's  kinda young and has his own protocol.Gave me a nerve block yesterday did not work.
had to inject imitrex last night for the 6th time in as many nights going to e-mail this am to find out whats next
Sal

Title: Re: They are Back Again....
Post by Guiseppi on Dec 16th, 2011 at 8:52am
Young is sometimes better, hopefully he's got some CH knowledge or is open to newer treatment options. Don't be afraid of being your own advocate. CH is one disorder where sitting down in front of a doc and saying fix me can lead to many painful nights. ;)

Joe

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