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Schmidt16

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Dec 20^th, 2013 at 10:21pm

Hey guys,

Just decided today that I would join the message board here. I have decided to join because of my increasing anxiety and oncoming depression resulting from this condition; that, I'm sure you can relate with.

Have been frequenting the site for months now, mostly for tips and whatnot. Please forgive me for the long post, I'd like to vent a little bit. A little about myself...

-I live in Alberta Canada, and I'm an electrician.
-I've suffered from CH since 2008 (newbie)
-My first diagnosis was hypertension. I was put on Adalat XL, then Topamax, among other meds.
-I was diagnosed with CH after my 4th trip to the doc. She gave me some triptans and wished me luck. Had no success with them, not to mention their ridiculous pricetag.
-My CH's were chronic for the first year or so, now they have become episodic but still common
-I usually get 1-6 a day, usually 5-8 on the pain scale
-I wake up with headaches in the morning, and am awoken during the night by my headaches too.
-I've been taking 5,000 IU of D3 and fish oil daily for the past 4 months and have had slight relief, though I'm afraid of stopping, and mostly afraid of getting CH.
-After an attack I feel extremely flushed and exhausted. I often do not have an appetite for hours, even if I was hungry before the attack.
-I'm an avid musician.

Like you, I have developed a fear of triggering a headache, and have had to deal with doubts and judgements of people, even my closest family. I have thought and pondered obsessively over why I get these headaches. I am generally a very happy and outgoing person, but I become detached to everything and feel like my headaches are trying to kill me. I know it sounds like I am drawing it out and dramatizing it, which I very well might be.

Anyway, I look forward to meeting some good people with maybe some good advice on here.

Thanks for reading!

Schmidt

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« Last Edit: Dec 20^th, 2013 at 10:25pm by Schmidt16 »

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: New to the forums Reply #1 - Dec 20^th, 2013 at 10:45pm Hi, and welcome, sorry you had to find us. You've come to the right place to vent. Hang in there, lots of info is on it's way. Hoppy.
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maz

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Re: New to the forums
Reply #2 - Dec 21^st, 2013 at 5:30am

Hi Schmidt Smiley

, welcome.

You are not over dramatizing your symptoms at all. Every single one of us has a similar story to tell.

Check out Batch's posts about D3. 5,000 iu per day is probably not enough. Most of us take more than that. Myself, I take 10,000 per day with an extra 20,000 once a week. Don't forget the other components of the regime - they are all important to keep you balanced. Also check out posts on oxygen (there is a yellow highlighted tab on the left of your screen), and the wonders of energy drinks.

Come back and vent any time you need to, and read, read, and read some more. The folks here know more about CH than any doctor you will find.
Best wishes, Maz.

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: New to the forums Reply #3 - Dec 21^st, 2013 at 7:32am Important item needs more information. What triptan?, what dose?, when do you take it? (at first sign of pain, after headache well developed?)
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: New to the forums Reply #4 - Dec 21^st, 2013 at 2:51pm Hi and welcome. Post any time you want to vent about things. We all know what CH is like from personal experience. Do you use any preventives other than the vitamin D3? The 5000IU D3 dose is low compared to what many people need to get good results with 10,000IU being fairly common, although 6000IU has worked fine for me.
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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: New to the forums Reply #5 - Dec 22^nd, 2013 at 9:05am Not overly dramatic at all the damned things hurt like hell! Glad you stuck your head in, hope we can help you find some relief. Joe
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Schmidt16

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Re: New to the forums
Reply #6 - Dec 22^nd, 2013 at 6:07pm

Hello and thanks a lot for the warm welcome and advice! And for being understanding of my lengthy post.

My current dose of 5000 is ideal because I only have access to bottles of 100 pills at 1000 IU each for about $18. If I found a source for higher dosage (if that exists) id be open to increasing my D3! Thanks for the advice, I'll see about finding some more and increasing the D3.

As for o2, I've decided to leave that on the back burner for now and focus on preventative measures. Besides, my job limits me greatly from using that. Funny thing, we have O2 tanks (Scot packs) in some of the trucks for H2S emergencies. Maybe I could sneak a few puffs during break Wink

Also, my mom was telling me about "calcium channel blockers" and taking magnesium based on some internet searches she did. What is your opinion on those?

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maz

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Re: New to the forums
Reply #7 - Dec 22^nd, 2013 at 8:30pm

Here in England we can only get D3 from pharmacies and shops in silly small doses, and you would have to take about 25 at a time. they are quite expensive too, about £4.50 for 30 tablets of 200 iu. No one can afford almost £4.50 a day.

I shopped around and found what I wanted on line. Try iherb.com.in California. One of their current offers is 360 softgels of 10,000 iu for $23.95 plus shipping. They sell all the other components of the regime in the high doses too. I also take 500mg calcium citrate, 500mg magnesium citrate, and 1000mg fish oil. The magnesium and calcium are very important as I understand they stop the D3 from drawing calcium from your bones. It's also important to get a blood test, so you know when your levels are high enough without over dosing.
Take a look at Batch's posts or send him a pm. He'll tell you everything you need to know.

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« Last Edit: Dec 22^nd, 2013 at 8:38pm by maz »

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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: New to the forums Reply #8 - Dec 22^nd, 2013 at 10:15pm What Maz said, Pm Batch. He's the guru on this stuff and will work with you on it. joe
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Mike NZ

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Oxygen rocks! D3 too!

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Re: New to the forums
Reply #9 - Dec 23^rd, 2013 at 2:17pm

Schmidt16 wrote on Dec 22^nd, 2013 at 6:07pm:

Also, my mom was telling me about "calcium channel blockers" and taking magnesium based on some internet searches she did. What is your opinion on those?

Your Mom did some good research.

Verapamil which is probably the most well know of the CH preventives is a "calcium channel blocker" (also known as a calcium channel antagonist), as is the taurine in energy drinks which many find helps with CHs.

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Magnesium has also been connected with helping with various headache types including CH.

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Using Google Scholar (Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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) is a good way to search through scientific journal publications where medical research is published.

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Schmidt16 CH.com Newbie Offline you're awesome. Posts: 10 Land of Black Gold Gender:	Re: New to the forums Reply #10 - Mar 6^th, 2014 at 9:52pm Alright, thanks guys. I now have a prescription for verapamil 40 mg I'll be starting this week. Hopefully we'll see some results!
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Mike NZ

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Oxygen rocks! D3 too!

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Re: New to the forums
Reply #11 - Mar 6^th, 2014 at 11:19pm

Schmidt16 wrote on Mar 6^th, 2014 at 9:52pm:

I now have a prescription for verapamil 40 mg I'll be starting this week. Hopefully we'll see some results!

A dose of 40mg of verapamil is a very, very low dose for CH prevention. Most people need 360-480mg a day for it to work as an effective preventive with some needing to go to around 1000mg a day.

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Esheel31

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Re: New to the forums
Reply #12 - Mar 7^th, 2014 at 10:05pm

I started with 40 mgs of verapamil 3 times a day in the beginning.my doc raised it to 80 mgs a couple of weeks later so I was up to 240 mgs a day when my last cycle ended.dont know if it was the verapamil or my cycle was ending but I do know that batch will be more than glad to give you all the info you need on the d3 regimen.he reached out to me without me even asking.you shouldn't worry about what people think here.everyone here knows what it's like to battle the beast.here you'll find support when you can't get it anywhere else.

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Schmidt16

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Re: New to the forums
Reply #13 - Mar 9^th, 2014 at 3:50pm

Did your verapamil use bring good results?

I was started on 40mg to see how it reacts with my body. While I understand that a normal dose is around 350-400 mg, my neurologist recommended starting at a very low dose, as I've had blood pressure issues in the past. Better safe than sorry I suppose

Also, Batch has contacted me about D3 and my use of the regimen. I need to get a prescription for a higher concentration of D3, but for now, I'd like to see if verapamil helps, so I will be starting the D3 later

Edit: I am in a cycle right now, and have found relief with D3!
Last Wednesday I was hit with 6 headaches around an 8 or 9 pain scale after two months virtually pain free. I starting taking 15,000 IU of D3 then dialed back to 10,000, and within 8 hours noticed my headaches getting easier to deal with, down to 5 or 6 pain. Not bad hey?

The issue here is taking 10-15 1000 IU pills per day. Are there any ingredients in these pills that could have affects on my body, besides D3?

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: New to the forums Reply #14 - Mar 9^th, 2014 at 4:55pm I notice you are taking 1000iu vitamin d tabs. Are you here in oz or in europe because if so it would be cheaper to buy them onlin. You can get them in 5,000iu and 10,000iu i get the 5,000iu together with the other cofactors from iherb.com Hoppy.
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Schmidt16 CH.com Newbie Offline you're awesome. Posts: 10 Land of Black Gold Gender:	Re: New to the forums Reply #15 - Mar 11^th, 2014 at 10:08pm Thanks for the reply Hoppy Here in Canada, anything over 1,000IU is prescription only. I am looking to either order from the US or get a prescription, although I heard it can be difficult for some reason... Its' harder to get prescription drugs here up north. More of a blessing than a curse, because I hate medication.
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