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Cluster Headache Help and Support >> Getting to Know Ya >> New guy http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1389233811 Message started by NAVMA on Jan 8th, 2014 at 9:16pm |
Title: New guy Post by NAVMA on 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, |
Title: Re: New guy Post by NAVMA on 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. |
Title: Re: New guy Post by wimsey1 on 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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Title: Re: New guy Post by Guiseppi on 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 |
Title: Re: New guy Post by maz on 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. |
Title: Re: New guy Post by Batch on 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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