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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> This has worked for me 2 years!
        
(Message started by: Kloon on Mar 14^th, 2002, 6:47pm)

Title: This has worked for me 2 years!
Post by Kloon on Mar 14^th, 2002, 6:47pm

I hope that it's OK to post this message. I'm not real familar with this kind of set up, so whoever oversees the message board feel free to delete this if you deem it inappropriate.
I wanted to relay to others who have clusters my successful control (going on 2 years 3 months) of my cluster headaches. I want go into how bad clusters are....guess you all know that....but let me just say that I have heard some say that they had different "levels" of severity which I also experienced. Mine had progessed to the point where I could just barely keep my life going. The bad ones were unbelievable and had gotten to be so frequent (several times a week) and the breaks in between episodes gone. I tried everything that my neurologist (third specialist that I tried over a 9 year period of having clusters) The last treatment he tried on me, I think out of desparation, (ergotomine tartrate ?? and lithium) wasn't working at all and a trip to the hospital for demerall ?? was all that was left. I all ready felt like a junkie from all the different treatments over the years and was absolutely desparate. My wife then convinced me to trya a diet approach that I had not tried before (last resort is to listen to the wife)..and my headaches responded in 2 weeks and I used this sucessfully ever since. (started on this diet approach Dec 27, 2000). I can't stress enough that I hope this doesn't mislead anyone on "another" wild goose chase because I've been there and I had not posted this because of that,but I'm still under control. I don't know the body chemistry behind it and certainly am no medical expert...what a disclaimer!
This is the diet: limit carbohydrates to 30 grams a day. Thats it. Sounds easy but, it is not. You have to really be disiplined and there is absolutely no cheating. 30 grams, not 50, 60, etc. You have to watch the nutrition pretty close and suppliment(vitamens, fiber-which although a carb-doesn't count) and increase water to 80 0unces a day with the carbs and water spread evenly throughout the day.I had tried the water remedy alone before to no avail. I also have found that excercise,( weights ), seem to help. This is not a healthy diet I might add and can really stress your system. Your body, I'm told, goes into a state of ketosis which is hard on th kidneys.(This came up because after 2 months on this I had kidney stones-urologist said no connection between the diet and this but I have can't help but wonder)...and as bad as the stones hurt, they are not even in the same ball park as clusters. I ahve found now that I can sort of cheat now and then on the carbs as long as I get back on it. I did test it after a year of sucess and started eatting normal and the clusters returned.(bad idea) I don't understand clusters, not sure if anyone does, and don't know if this will work for anyone else, but i felt guilty not sharing this. Again, please forgive me if you jump on this and it doest work. All of you are in my prayers and I hope you find something. I still have a couple of oxygen bottles in the attic that I never returned as a reminder to how bizzare clusters made my life. Feel free to contact me if you want more details.

Title: Re: This has worked for me 2 years!
Post by Marc on Mar 14^th, 2002, 8:23pm

Hi Kloon,

I'm very glad you are pain free. Just curious: what was your Cluster pattern before trying your approach? ie how often did your Clusters hit?

Marc

Title: Re: This has worked for me 2 years!
Post by kim on Mar 14^th, 2002, 8:50pm

Hi Kloon, your post was intriguing. It's wonderful that you are ch free. I agree with you about dietary change during ch attack. Have had triggers with many foods during ch. My solution has always been to eat as little as possible bcaue of fear of onset. Never heard of the carb thing. Meds are a maze of trial and error - mostly error. In any event, wishing you continued success. I'm going to ask my neuro about it. Thanks. Kim

Title: Re: This has worked for me 2 years!
Post by Georgia on Mar 15^th, 2002, 12:20am

That's great news! Thank you for sharing it. I have tried that in the past without any success...maybe it is time to try it again though. Hope your painfree times last forever......

Title: Re: This has worked for me 2 years!
Post by jon on Mar 15^th, 2002, 6:06am

Oddly enough this is like that Atkins diet. My wife got me on that in January and in addition to losing about 25 lbs in 3 months my DH's decreased drastically too. Especially since I was dreading the upcoming change of seasons. Then one of my "buddys" that had been on it said you had to take a break to recharge your batteries to continue to loose weight and the headaches came back full strength and then some. So I am back to my diet trying to regain the nirvana, trying to "score the shrooms to try, adding to my grocery list of rx's, damning my insurance companie's imitrex views, crying myself to sleep, asking my wife to hide the gun, etc....... ha ha I know you have all been there

Title: Re: This has worked for me 2 years!
Post by Lori on Mar 15^th, 2002, 11:32am

Question?? Were you chronic CHer? I'm wondering how this would work for an episodic? Any episodic ever try it?
If so, does it break the cycle or delay the cycle until you go back to your normal diet I wonder? I could handle this type of diet short term, but I don't think long term. I don't want to do more damage to my body. It's like we trade off isn't it??? It really, really isn't right!!!!!!!!!!

Title: Re: This has worked for me 2 years!
Post by vangogh71 on Mar 15^th, 2002, 4:34pm

I am actually on the Atkins Diet, independent of what has been posted here. I started about 3 months ago and have lost about 30 pounds but I still had a cycle start on Feb 19/02. However this cycle has been considerably weaker than the last 2 but I never linked the diet change to the cycle.

If reducing carbs is the solution, then I am on my way. If not the diet still makes sense from other health perspectives and I'm feeling much better weight wise.

I just hope that I kick this cycle soon and see if this is my last one!