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One of the lucky ladies to join! (Read 3105 times)
mrsbenson03
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One of the lucky ladies to join!
Jan 3rd, 2016 at 3:41pm
 
My name is Miranda and I live in Phoenix, AZ.  My first cycle started as far back as 21 years ago, when I was 13.  I wasn't diagnosed until around 2009.  Basically, I have episodes every 2 yearsish, though in recent years, it's been closer to 3.  They last about 6-8 weeks, typically lighter and lesser hits in the beginning, peak in the middle of the cycle and decrease towards the end.  Many of my cycles have been triggered by a postpartum period-had cycles within two weeks of giving birth to 3 of my four children.  Never had them while pregnant. 
This cycle has started on the tail end of a weird gastrointestinal issue that started in the beginning of November: hives, vomiting, stomach pain, etc.  Was on antibiotics, prilosec and then pantoprazole, and benadryl for a little while, wondering if all/some of this triggered my cycle.  Right now I am following a pretty low histamine diet, I'm only a week in, so it's hard to tell whether it's made a difference on the severity and frequency.
I also have a bottle of indomethacin on my counter.  While researching cluster headaches, I found another condition-episodic paroxysmal hemicrania that seems to mimic cluster headaches, but is more common in women and tend to have more day hits, than night-like I do. I guess the way they diagnose between the two is the effectiveness of indomethacin.  Would you say it's atypical to have hits in the day for the majority of this group? 
I guess I should have tried it already, but I really try to avoid all of these medications as much as possible and would like to see if mending my immune system might help.  Has anybody had any luck with managing diet, supplements, nutrition to try and tame this beast?

Looking forward to chatting with you all and thank you for your guidance and support. I've been stalking these message boards for help long before I officially joined today.  Smiley
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« Last Edit: Jan 3rd, 2016 at 4:07pm by mrsbenson03 »  
 
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MDR
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Re: One of the lucky ladies to join!
Reply #1 - Jan 3rd, 2016 at 5:47pm
 
Maranda,
Go here and Read this (Anti-Inflammatory Vitamin D3 Regimen and Survey) its in the medication and treatment section.)This may helped it helped out a lot of people here.

Mark.

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mrsbenson03
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Reply #2 - Jan 3rd, 2016 at 6:20pm
 
Thank you so much Mark! I am actually on my way back from my local Sprouts, picked up all of these supplements. So excited to get this started. I actually just had some blood work done and they did test my Vitamin D levels, should I do the survey with that information or is it a different test?
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MDR
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Re: One of the lucky ladies to join!
Reply #3 - Jan 3rd, 2016 at 7:16pm
 
Maranda,
If your talking about the cluster survey I wouln"t if you were already diagnosed in 2009. I would just read up on everything you can.

Mark.
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mrsbenson03
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Reply #4 - Jan 3rd, 2016 at 8:02pm
 
I was talking about the survey on the anti-inflammatory protocol.  Where you have your Vitamin D levels tested and then try the protocol for 30 days and test them again?
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MDR
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Reply #5 - Jan 3rd, 2016 at 9:56pm
 
Maranda,

I had my levels checked years ago never went back I take 30,000iu vitamin D,2 fish oil and 1 calcium,magnesium and zinc been doing that concoction for years.

Mark.
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Mike NZ
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Re: One of the lucky ladies to join!
Reply #6 - Jan 4th, 2016 at 12:23am
 
Hi and welcome. It's good that you made the plunge and posted.

I bet it was tough going through CH without a diagnosis whilst trying to get through school even if it was "only" 6-8 weeks. And your experience of not having CH during pregnancy is something that quite a few mothers have reported here over the years too.

A cycle starting after a gastrointestinal issue seems to align to a few of Batch's recent posts (he is the D3 guru). Ask him all your D3 questions and you'll get great replies from him.

Indomethacin is very good for paroxysmal hemicrania but not for CH. It is often used to differentiate between the two as a response or lack of it will point to one of them. But when using it make sure you take something to protect your stomach lining as it can cause issues.

Whilst many get CH at night, quite a few get them during the day (about 95% of mine are during the day), so that won't rule out CH.


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AussieBrian
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Re: One of the lucky ladies to join!
Reply #7 - Jan 4th, 2016 at 1:20am
 
Indomethicin is a wonderful medication and I swear by it, but I still reckon every bottle prescribed should come with a bottle of the tummy-protector taped to it.

Not much use in the management of Clusters but certainly has a place with other cluster-like headaches.

I know a neuro who uses it as a diagnostic tool.


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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Batch
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Re: One of the lucky ladies to join!
Reply #8 - Jan 4th, 2016 at 2:14am
 
Hey Miranda,

I've already replied to your other post... but after reading this thread, I decided there's more to say.  In my original post I suggested you start your husband on this regimen...  Now that I see you have children... get them started on it as well...  I have my entire family taking this regimen: my wife, brother, 3 kids, their spouses and seven grand kids...  The health benefits are hard to argue...

50 IU of vitamin D3 per pound of body weight is a very safe dose.  The cofactors are also needed, and in particular, magnesium, as vitamin D3 consumes available systemic magnesium very rapidly. 

You can check with the  Linus Pauling Institute
Micronutrient Information Center at OSU for the suggested doses of the remaining vitamins and minerals used in this regimen by age group at the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

The simple way to get the kids taking this regimen is to buzz up the supplements in a fruit smoothie (apple, pineapple, banana and blueberries thinned with a little apple juice.)  It's a little extra work in the morning... but you'll have the satisfaction of knowing you're giving your kids a healthy head start for the day.

Take care and please keep us posted.

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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pattik
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Re: One of the lucky ladies to join!
Reply #9 - Jan 4th, 2016 at 10:03am
 
Greetings Miranda.

I can speak to a couple of your statements and questions. I'm episodic, and also had a remission from my very predictable yearly episodes the year I was pregnant. I remember other women on this forum having similar responses. Maybe hormones have a protective effect. The reason I think this is the case is because I didn't get the typical night attacks until I hit menopause at around 50.  Before then, my first attacks of the day were usually around 5:00-6:00 a.m.
My episodes after age 50 were full of the attacks every couple of hours throughout the night. I guess I should consider myself lucky to have had that part of it delayed for so long.

As to your question regarding supplements and nutrition...I have tried a slew of things over the years, because I have a tough time with the side effects from the standard prescription preventatives. Many have found help with melatonin, and you will find many threads on this site if you do a search. Benadryl can also be helpful. I'm glad to see you are looking into the D3 anti-inflammatory regimen. It has worked quite well for me for the past 3 years.

I'm glad you found this forum. It has tons of information to offer to people who need answers for their CH.

~Patti

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« Last Edit: Jan 4th, 2016 at 10:06am by pattik »  
 
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mrsbenson03
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Re: One of the lucky ladies to join!
Reply #10 - Jan 4th, 2016 at 8:55pm
 
First off, let me say that you are all are the most amazing people ever.  The resources and wealth of knowledge on this page are beyond what I have seen in any health forum, ever.  Just incredible. 

Thank you Mark, Pattik, Mike and Aussie Brian-your insight and shared experiences are so helpful!

Batch-I have to do some more digging in this forum to find out how the anti-inflammatory regimen was introduced to the group, but from what I gathered you are no less than the guru on this topic.  From the bottom of my heart, thank you!!!! I started yesterday-and my hit this morning was about 10 minutes long on oxygen and it was so low level that I probably could have watched TV throughout it.  The hit this afternoon was about maybe 10 minutes and felt more like a shadow than a real headache.  I am also eating extremely clean (anti-inflammatory diet) just to really drive this home, but the difference with the supplements added from just the day before is significant.  While it's still early in the cycle (usually ramps up), they usually get worse and more frequent instead of getting better, and it seems to be doing to the opposite now!
I am so glad that you mentioned my children and husband, it's almost like you read my mind.  A huge motivation for me to figure this out from a natural perspective is so that should this god forbid-start to happen to one of my children, even when they become adults, I want to be able to help them get better.  I was just thinking that I need to figure out how I can get them going on this-so thank you for that resource-I want to do this ASAP.   

Again, thank you all so so much! This makes an incredible difference. 
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« Last Edit: Jan 4th, 2016 at 9:00pm by mrsbenson03 »  
 
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Batch
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Re: One of the lucky ladies to join!
Reply #11 - Jan 5th, 2016 at 4:00am
 
Miranda,

I'm the guilty culprit who developed the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and the vitamin D3 cofactors back in October of 2010.  I started posting about my experience with this regimen in December of 2010 in the thread titled "123 Days PF And I Think I know Why." 

This thread has become a running commentary on the anti-inflammatory regimen and its evolution.  It is also the most viewed and commented thread here on CH.com...  There were so many views, the view counter broke at 250,000 views and started counting from zero all over again.

I'm not the first CH'er to suggest vitamin D3 as a CH preventative...  That credit goes to Niels back in 2009...

That said, I am the guy who did the research on the needed vitamin D3 cofactors and started exchanging data with Dr. Robert Heaney, MD, one of the real Jedi Masters of vitamin D3 therapy.  I also started an online survey of CH'ers taking this regimen to prevent their CH back in December of 2011 in the companion thread "Anti-Inflammatory Vitamin D3 Regimen and Survey."

The most important part of all this has been the user responses.  We've learned more from these responses about what works and why... as well as when it doesn't work for some... and why.  In short, it's an ongoing team effort and learning experience...  I think we're all better off because of that team effort.

Take care and please keep us posted,

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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