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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Newbie from FL!

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Newbie from FL! (Read 1565 times)

Kat92

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Newbie from FL!
Jul 3^rd, 2020 at 5:32pm

Hey everyone!

I am new to the site, I am a member of cluster busters.org. This is my second year I am starting dealing with chronic cluster headaches. I am a 27y/o female and they started when I was 26. The year is relatively mild with strictly shadow pain all year. Starting at the end of June/beginning of July they get pretty bad, so right now! I am familiar with O2, I have a tank and my set up. I try to use it as little as possible because I pay $78 out of pocket per tank. I have been on the D3 regimen year round. I guess I don't have specific questions, but I just wanted to introduce myself as another soldier in the fight. I have been to 6 neurologists being diagnosed with migraines every time. It is super frustrating. ANY info I have gathered has all been from the site and the amazing veterans sharing their experiences. I can only hope this gets easier as the years go on. I think coming to terms with how life altering this is has been harder than dealing with the headaches themselves. I miss my life prior to this. My most recent neuro put me on verapamil 80 mg twice per day extended release. I am quite frustrated as this drug does not seem to be working, even at higher doses. I am seeing my neuro on wednesday to hopefully switch to the immediate release verapamil. Anyone with success with verapamil want to chime in and give me some advice. I am pretty frustrated at this point. I have also added benadryl to my D3 regimen. THANKS TO BATCH! Any who, look forward to chatting with you all.

PFW

Kat

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Newbie from FL! Reply #1 - Jul 4^th, 2020 at 6:01am Welcome aboard, Kat, and I can't answer a single one of your questions, but I still want to say G'day. Happily there is a wealth of info here and plenty of good people happy to share it. You're among friends who truly understand, Brian down under.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

MDR CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 265 Elysburg Pa. Gender:	Re: Newbie from FL! Reply #2 - Jul 4^th, 2020 at 6:29am Hi Kat92, Lived in Florida for 20 some yrs Boca Raton the only thing I use is vit. D I take 50,000 iu a day I was chronic for 10+ yrs it was brutal. Read Read everything you can on this board this place saved my life. Mark.
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Kat92 CH.com Newbie Offline I Love CH.com! Posts: 6	Re: Newbie from FL! Reply #3 - Jul 4^th, 2020 at 11:03am Hey nice to meet you. Wow chronic for 10 years? That stinks. What broke your Chronic CH? Was it solely the D3 regimen? Is it safe to be taking 50,000 IU of Vitamin D daily? I have the D3-50 BioTech water soluble and I'm wondering if maybe I should be trying that. Best Kat
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MDR CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 265 Elysburg Pa. Gender:	Re: Newbie from FL! Reply #4 - Jul 4^th, 2020 at 12:54pm A lot had to do with the vitamin D I think plus I think it ran it's course never had a problem with vitamin D. One other thing I do is drink lots of water. Mark.
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Peter510

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Don't give out... But
don't give in.

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Wexford. Ireland
Gender: male

Re: Newbie from FL!
Reply #5 - Jul 5^th, 2020 at 7:02pm

Kat,
Welcome.

I’ve been chronic since 2012, episodic for 10 years prior to that. The D3 Regimen is the only thing that has ever made a difference and while I still get shadows daily and very occasionally a big hit, my life is manageable now.

Can I suggest you send a PM to Batch regarding loading and maintenance dosing.

You have nothing to lose but your headache.

Best,

Peter.

You don't stop laughing because you grow old....You grow old because you stop laughing.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Newbie from FL! Reply #6 - Jul 6^th, 2020 at 9:17pm Hi Kat92, and welcome, I take one BIO-TECH D3-50 once a week, and all the other cofactors daily, which is keeping the beast at bay for me. Cheers Hoppy
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Kat92

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Re: Newbie from FL!
Reply #7 - Jul 7^th, 2020 at 2:17pm

Thanks for the response! Normally, I take one D3-50 per week as well. The biotech water soluble. I am actually beginning the loading dose again for a week during a strong time of year for my cycle. The past day has been SO MUCH better than the last week. I am down to only mild shadows and maybe one stronger attack per day. Friday I was having attacks every 3 hours from 4PM-3AM. I also added benadryl to my regimen right now.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Newbie from FL! Reply #8 - Jul 11^th, 2020 at 1:18am I'm pleased to read, things are getting better for you, stick with what you are doing and hopefully the beast will move on and then you can stay pain free and get on with your life, like myself. Cheers Hoppy
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