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lydia nichole

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Re: I dont want to live like this anymore!!!!
Reply #25 - May 18^th, 2012 at 12:24pm

UPDATE!!!!! so i have found a new Neurologist in Alexandria VA The Neurology & Headache Treatment Center and he is Amazing. he spent over an hour with me just talking and listening and explaining everything. He has given me i think every medication for cluster headaches and i am now on Preventatives : topamax, and prednason(spelling) and When the CH start i have: Relpax, another pill triptan cannot remember the name, the nasal spray cant remember the name, and Sumavel dose pro For the ones the pill and nasal form will not work. i get 12 Sumavel dosepro shots a month he said without a doubt i have the worst CH he has ever seen based on how many i have && that without a doubt i have CH. all blood test, MRI's and Cat scans come back normal. so far i have tried the Relpax and the nasal spray. Both work great. I am so happy i fill like i actually will be getting my life back =)))) THANKS FOR ALL YOUR SUPPORT. YOU GUYS ARE THE BEST AND I WISH YOU ALL THE BEST AND YOU ARE ALL IN MY PRAYERS!

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: I dont want to live like this anymore!!!! Reply #26 - May 18^th, 2012 at 1:49pm Do yourself a favor and get on Batch's Anti-inflammatory regimen (big doses of vitamin D3, fish oil, and mineral supplements). If you're like over 70% of us, you won't need all that other expensive stuff.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: I dont want to live like this anymore!!!! Reply #27 - May 18^th, 2012 at 2:11pm Lydia that is GREAT news. A neuro who knows his stuff and cares is worth their weight in gold, couldn't be happier for you! Joe
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Batch

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Re: I dont want to live like this anymore!!!!
Reply #28 - May 18^th, 2012 at 4:21pm

Hey Lydia,

Brew gave you some good advice. As I posted in this thread earlier, the odds are you have a vitamin D3 deficiency and that deficiency is making your cluster headaches more frequent and more painful.

The next time you see your neurologist or PCP, tell him you think you have a vitamin D3 deficiency and that you want the lab test for 25(OH)D, the serum level metabolite of vitamin D3. Don't take "No" for an answer...

The coke and candy bar bet still stands that your serum 25(OH)D concentration will come back less than 30 ng/mL. We've had CH'ers with active CH have their serum 25(OH)D concentration tested and the results have come back as high as 55 ng/mL.

Of the CH'ers who have gone pain free while taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and then gone in for this test, all have had their results come back between 60 and 110 ng/mL.

At 20 cents a day, the anti-inflammatory regimen is far less expensive than any of the prescription CH preventatives, posts by CH'ers on this site indicate it's more effective than verapamil or any of the other preventatives and it has no significant adverse side effects. On top of that... It's a healthy regimen that's actually good for you.

You might want to have your daughter tested for a vitamin D3 deficiency as well... I'll wager another coke and candy bar she's vitamin D3 deficient...

Take care,

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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dv8r_dragon

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small deeds inspire big

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Re: I dont want to live like this anymore!!!!
Reply #29 - May 21^st, 2012 at 9:03am

I'm here!...and how fricken annoying! Me girl, me have, me chronic! Makes me wanna kick puppies and punch babies!....no seriously I am extremely offended for not only you and me but those thousands of women out there who are suffering because of that one stupid statement. I was told that women are rarely chronic...ok how the hell can any medical professional make that kind of judgement when so very little is known about the condition?!

To me that like telling a guy, there's no way you have breast cancer because You're not a girl...guess what NOT F'N TRUE!...sorry...i cant stand when someone suffers needlessly because of assumption or stupidity and it sounds like that was both...ugh!...

Lol ok I'm done being mad...

I am so glad you were able to find this forum and we can help you as much as possible. I hope my post helps you to realize that you aren't alone...there are a lot of us CCH's(chickclusterheads) out there.

Love and Gratitude! Stay PF my friends!

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I'm not crazy...just misunderstood

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lydia nichole

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Re: I dont want to live like this anymore!!!!
Reply #30 - Jun 7^th, 2012 at 10:38am

My Neurologist put me on Topamax now I have been on it for 3 weeks and 4 days im at 75mg right now when I am at full dosage he wants it to be 200mg but I like I said I have only been on for 3 week and 4 days and have lost 18lbs I am was not super heavy to begin with. I can’t eat I have no appetite a day I may (probably less) consume 500 calories and that’s me forcing myself then I feel extremely nauseous. I also am having a hard time sleeping because my body has then pins and needles sensation from the medicine. How long does it take for these side effects to subside?

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Akina

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Re: I dont want to live like this anymore!!!!
Reply #31 - Jun 7^th, 2012 at 12:29pm

Topramax is notorious for weight loss issues. If you have lost that much already and you have not been on it a full month, you need to consult your neuro about another preventive. A common preventive is Verapamil, it's normally one of the first prescribed. Another common one is lithium.

I would echo what a couple of people have already said and that is the Vitamin D3 regime. It is not expensive and seems to benefit a number of CH sufferers. Just something to think about.

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lydia nichole

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Re: I dont want to live like this anymore!!!!
Reply #32 - Jun 7^th, 2012 at 3:32pm

My doctor said to give it till I see him on 06/28/2012. My PCP weighed me yesterday so my neuro is unaware of my weight loss. But I did call and tell them I was hardly able to eat and all the side effects I was having and they said just wait it out until I see them again on the 28th I guess give myself time to get use to it? He did not want to give me Verapamil because when I went to see him my blood pressure was low (because I had just got out of the hospital 2 hr prior and they had giving me narcotics) and I told him that but said he really did not want to risk it. But when I came back and saw him again he would check my blood pressure he would consider it if the Topamax was not working or I was not tolerating it well. So I guess I will just wait until the 28th or is that much weightless something I should call and inform him of?

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Skyhawk5

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Re: I dont want to live like this anymore!!!!
Reply #33 - Jun 11^th, 2012 at 10:54pm

Lydia, CAUTION, do not mix triptans within 24hrs. Can be deadly!!!!!!

I used Topamax during my last cycle, and at the suggestion of people here that use it. Take all or the majority in the evening to help avoid side effects. During 9/11 thru 2/12 I lost 28lbs. I'm a small guy.

On the Oxygen, if you've only used it at the Hospital, you were too late and probably not given the proper CH mask. With a bag @ 15LPM minimum. O2 or any other abortive must be used within minutes if not seconds.

Counting on any Doctor to know what is best for CH is a common mistake. CH is so rare, most Doctors have only heard of it and even "Specialists" are not up on the best treatments.

Knowing more than our Doctors is the best chance for proper treatment. You will find that knowledge here from people who know.

Fighting this beast is hard, days seem like weeks. The only way to speed up finding a good battle plan for you is for you to listen to the knowledge right here in front of you.

Knowledge is power against the beast.

Don

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« Last Edit: Jun 11^th, 2012 at 11:02pm by Skyhawk5 »

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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lydia nichole

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Re: I dont want to live like this anymore!!!!
Reply #34 - Jun 12^th, 2012 at 11:14am

The side effects from the topamax are subsiding thank god. But my headaches are starting to come back a bit nothing like before keep in mind im a chronic sufferer and had an average of 15-20 days a month of CH's for 7 years before that it was more episodic. But in the last week I have had 3 headaches and now im scared the medicine is not going to work anymore = ( I am at 75mg and I think my final dosage is going to be 175mgs. I try not to have to take more then one triptain within 24 hours. thanks for the advice.

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