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New guy (Read 1872 times)
NAVMA
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New guy
Jan 8th, 2014 at 9:16pm
 
Hello all,
My name is Rick. I am 39. I have been dealing with CH’s since 1996. I was diagnosed in 2011. I have tried Imitrex, another migraine medication, the name I can’t recall, and Depakote. The Imitrex worked for a bit but not very effective for me. I don’t currently take anything. The majority of my headaches occur at night and wake me up. By that time I don’t think anything really helps other than my little rituals I have come accustomed to. They don’t really help, more of some means of self distraction. I have found that if I relax in the evenings, such as stretching out on the couch to watch TV or read something etc… that is a huge trigger. Seems like they don’t want me to get any rest. I know I drive my wife crazy during my cycles because I refuse to sit or think of slowing down until its time for bed. I commonly adjust my sleep schedule during a cycle by hitting the rack early knowing within an hour of going to sleep I will be up doing my “dance”.
I did not know of the O2 treatment. It sounds as though quite a few people have found some relieve with that. I am very happy for them and hope maybe that will help me as well. As for now I have started the water regiment. Hopefully I can get in to see my Doc soon and see about getting an O2 set up.
This site is amazing from what I have seen. When I found it today I actually got emotional. I had no idea there were some many that know what this is like and I think you all are amazing people for taking the time to put something together like this. Reading some of the posts on here I almost feel weak. I don’t know how some of you have the strength to deal with more than two or three of these a day. After two I am completely wasted but that is typically the most I get.
Bless you all and I am happy to have found this place.   
Sincerely, 
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Guiseppi
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San Diego to Florida 05-16-2011


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Re: New guy
Reply #1 - Jan 8th, 2014 at 9:24pm
 
Welcome to the board, we're damned glad you found us! 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 35years, 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. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.


Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

This link will show you how to get set up with welding oxygen:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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.


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. Since most of your attacks start at night, consider trying melatonin, an OTC sleep aid you can find at vitamin, health food stores or pharmacies. Start with 9 mg about 30 minutes before bedtime. Some have to go as high as 18 mg, it takes some trial and error but many can avoid the night time attacks this way. The whole "Getting hit as soon as you relax" is very common.

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
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NAVMA
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Re: New guy
Reply #2 - Jan 8th, 2014 at 9:51pm
 
Thank you so much for the info. I will definitely try the vitamin/mineral/fish oil supplement. Congrats on being pain free for so long. I hope they never hit you again. Damn this condition.  There are times I feel as though I am stuck with not many options. I am in the Navy and really try to stay away from the Doc in general. Unfortunately certain medications will keep me from being able to do my job as far as the Navy sees things. I am currently in the midst of a cycle that has lasted about a month longer than usual. It has me a little concerned and more than a little frustrated.
I have conceded to my wife though and am making an appointment tomorrow and try to approach the situation again.
Thank you for taking the time to write me. I hope this will be the first step toward some light at the end of this tunnel.
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Mike NZ
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Re: New guy
Reply #3 - Jan 8th, 2014 at 10:03pm
 
Hi Rick and welcome

Oxygen simply is amazing at killing CHs, just read up - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register - you'll see how we use it to amazing effect. I can kill off a CH in about 5 minutes!

The vitamin D3 method is also great, with over 80% getting a positive result. I'm almost 2 years pain free using it with some around 3+ years.

Joe's post has some great advice which really does work.

Also read up here like mad and ask all the questions you can think of. We'll try to answer anything you ask.
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wimsey1
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Re: New guy
Reply #4 - Jan 9th, 2014 at 8:04am
 
Hello Rick, and welcome. Good advice from Joe and Mike. In fact, great advice. You're not as lost as it feels. I know exactly what you're going through since my experience is pretty much the same as yours with sleep and relaxing. It can be so frustrating. I would recommend you PM Pete "Batch" Batchelor on this site. He is a retired Navy pilot and could have some words of wisdom navigating the Navy's medical apparatus. Let us know if there's anything we can do. God bless, and thank you for your service. lance
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Guiseppi
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Re: New guy
Reply #5 - Jan 9th, 2014 at 9:19am
 
I hear ya with work and meds, I recently retired from a 30 year career in law enforcement. I used to keep an E-Tank of oxygen in the trunk of my cruiser when I was on cycle. Start to get hit, whip out the tank, put myself out of service for about 10 minutes, and try to beat the beast into submission with oxygen! Always a balancing act with how much you want your supervisors to know about your condition for fear it'll screw with your career. Wish I'd have had this D-3 regimen 35 years earlier!

Joe
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maz
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Re: New guy
Reply #6 - Jan 9th, 2014 at 9:53am
 
Hi,
Did you have the imatrex in tablet form? The tablets take far too long to get into your system to be very effective. There is a nasal spray, said to be better than the tablets but I have not tried it myself. Imatrex also comes in auto injections which are the best of all. I can go from a screaming K10 (see kip scale,tab on left of your screen) to pain free in 5 - 7 minutes. They are easy to use and don't hurt (much). Compared to a bad CH they are a walk in the park.They are my new best friend, and well worth a try if you can get it.
Maz.
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Batch
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Re: New guy
Reply #7 - Jan 9th, 2014 at 1:54pm
 
Hey Rick,

Go Navy!!! and thank you for your service...  Welcome aboard CH.com.  You've come to the right place...

Joe has already given you the link to the anti-inflammatory regimen...  The only thing I'll add at this point is listen to your wife...  When you see your doc, ask for the lab test for 25(OH)D.  CH'ers with active bouts of CH who had this lab test before starting the anti-inflammatory regimen averaged a 25(OH)D serum concentration of 23.4 ng/mL... 

The normal reference range for 25(OH)D is 30 to 100 ng/mL so you can infer that most if not all CH'ers with active bouts of CH are vitamin D3 deficient...

Interestingly enough, 81% of CH'ers who start this regimen responded with a significant reduction in the frequency, severity and duration of their CH... 75% experienced pain free days and 60% went completely pain free. 

When these CH'ers went in for this lab test, they averaged a 25(OH)D serum concentration of 76 ng/mL.

Connecting the dots... it's easy to see these results suggest a causal relationship between a vitamin D3 deficiency and cluster headache... 

Moreover, when you add in the fact that when chronic CH'ers stopped taking this regimen after experiencing a pain free response... and their CH returned in a week to ten days... you've got another "A Ha" moment of insight...

Sooo...  Single up all lines and prepare to get underway... or pull the chocks and get ready to launch...  You're going to like what the anti-inflammatory regimen does to your CH...

Take care and have a fine Navy Day!

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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