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Rumeke

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Is this my new "norm"?
Feb 28^th, 2016 at 10:37am

I have suffered from CH for about 12 years..cycles every 2 years for 6-8 weeks in the spring. Mostly nighttime REM attacks but a few during the day. In 2013 my cycle started in August and lasted until December and 98% were killed by O2. I have been on the D3 regimen since 2012.

In August 2015 my cycle started again, stopped in Oct and then started again in Nov. Again all during REM but none I couldn't stop in a few minutes with O2 (15lpm with non-rebreather mask).

Here I am in Feb and still having attacks. Most are kip 3-5 and have settled into a cycle of one night with hits every 1-2 hours and some during the day and then 2-3 nights pain free. I am every so thankful for those pain free nights!

Is this what being chronic means?

My last D25 level was 85 so that's not it. So I am wondering if this is my new norm?

Judy

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Mike NZ

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Re: Is this my new "norm"?
Reply #1 - Feb 28^th, 2016 at 12:56pm

The definition is chronic is someone who has active CH for over a year with no break longer than a month. However the definition is pretty arbitrary and there is no difference between a CH that an episodic person gets and one that a chronic person gets.

It really is just a label to say that the person has active CH for a long duration. So don't worry about it.

As to it being the new "norm", well it may be, it may not be. CH is notorious for changing on you so just take it as it comes, being prepared for a CH and being thankful for when you don't get them.

Sorry there is no magic answer.

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MDB

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Re: Is this my new "norm"?
Reply #2 - Feb 28^th, 2016 at 12:59pm

hello judy.. im affraid im not going to help you in the d3 .. i have not started yet..
But meanwhile.. seems to me.. something happen to you that is speed up the cycles...
I can offer you some tips.. to see if something help you.
it will be easy to discover.. since you are on 2-days free o pain.

- If you have stomach problems offen try only to eat fish.. breasts chicken ( fat free ), and some green vegetables.. avoid sugar, alcohols, edulcorants.. avoid anything pre-processed also included fruit ( have sugar) and yeast... ( any kind of bread.. )

- if you smoke.. try to smoke less.. 3-4 day
- 3 times a day put ice on your back ( all your back, starting cover your spine.. and in the neck ) 10 minutes.. 3 times.. at morning.. after lunch..after go to bed.

In my case.. i´m discovering.. that perhaps.. there is a relationship with some histaminic reactions to food,candida overgrowth...

I also i have notticed.. that change routines in the body.. can cut "mini-cicles" for the chronics..
Good luck.

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Bob Johnson

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Re: Is this my new "norm"?
Reply #3 - Feb 28^th, 2016 at 1:48pm

Given your fairly regular periods, it would make sense to use preventives and abortives which have quick action and don't reguire you using meds most of the year.

Are you working with a headache doc? If so, consider approaching your cycle with a mix of quick acting preventives and abortivess.

Print the article below and use as a discussion tool.

While O2 is fast acing, the physical load is a problem compared to fast acting pills/injections.

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Rumeke

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Re: Is this my new "norm"?
Reply #4 - Feb 28^th, 2016 at 3:43pm

Thanks Bob,

I have been on verapamil 240 ER twice a day for 7 years. My bp was high anyway so I have stayed on it daily.

I recently switched to a new Neuro since the local CH doctor retired for medical reasons. This is at one of two local headache/neuro clinics. The old Neuro was at the other one. The only suggestion they had was to switch to regular verapamil 3 times a day.

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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: Is this my new "norm"? Reply #5 - Feb 28^th, 2016 at 3:48pm Mike NZ, Thanks for the reassurance. I think I was just getting a little down because this cycle has lasted so long. At least the hits seem to be all in the 2-4 kip range and not the 8-9 like they were before. I keep reminding myself that I need to be thankful for that! lol
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Batch

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Re: Is this my new "norm"?
Reply #6 - Feb 29^th, 2016 at 12:19am

Judy,

Off hand, I'd say you're getting partial CH relief from the vitamin D3 regimen... Have you tried taking Benadryl (Diphenhydramine)? 25 mg every 12 hours for a week to 10 days might just make the difference. A first-generation antihistamine like Diphenhydramine crosses the blood brain barrier to block H1 histamine receptors in neurons throughout the brain.

Last March when the heavy pollen fall from the Alder and Maple trees around the house started, a recent lab test indicated my 25(OH)D was 79 ng/mL on a maintenance dose of 10,000 IU/day... Within a 24 hours of the heavy pollen fall starting, the CH beast was jumping ugly... I started 50,000 IU/day loading doses and ran my 25(OH)D up over 100 ng/mL during the next week... but the beast was still jumping ugly...

That's when the clue bird made the low pass saying "Treat The Allergy" so I started the Benadryl (Diphenhydramine)... 12 hours later I was again totally CH pain free.

In researching the effects of an allergic reaction, it turns out they cause a flood of histamines that make just about any CH intervention less effective... if effective at all. For you old-timers... and I consider myself among you at 71, the condition referred to as a histamine headache or Horten's Histamine Headache may ring a bell...

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Feb 29^th, 2016 at 12:21am by Batch »

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thierry

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Re: Is this my new "norm"?
Reply #7 - Feb 29^th, 2016 at 4:44am

Hi Batch,
I hope you are well.
You mention above that you go from 80ng/ml to 100ng/ml with some 50000iu loading doses.
May I ask, how many of these loading doses are required to achieve 100ng/ml from a level of 80ng/ml and how often and for how long would you take these loading doses?
So I guess I'm asking, once a person has a reading of 80ng/ml, how many iu of D3 is required to achieve a reading of 100ng/ml?

All the best

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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: Is this my new "norm"? Reply #8 - Feb 29^th, 2016 at 1:39pm My dear Batch! Thanks for chiming in! I was wondering about allergies as we do burn wood. Going to try some Benadryl at a low dose since I'm pretty drug sensitive. I need to still be able to find my way to the O2 or head if needed! lol Judy
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Batch

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Re: Is this my new "norm"?
Reply #9 - Feb 29^th, 2016 at 5:34pm

Thierry,

The rule of thumb that I use to obtain a desired 25(OH)D response with a loading dose is based on several studies using single oral loading doses of 300,000 IU, 500,000 IU and 600,000 IU of vitamin D3.

The response in these cases was measured from 25(OH)D baseline concentrations below 30 ng/mL and it works out to an average of 10 ± 3 ng/mL gain in 25(OH)D serum concentration for every 100,000 IU of oral vitamin D3 taken.

Vitamin D3 loading doses have a smaller response when the starting 25(OH)D serum concentration is in a range of 60 to 80 ng/mL. Here the 25(OH)D response can be as low as 3 ng/mL for every 100,000 IU of oral vitamin D3 loading dose. Weight, BMI and homeostatic control mechanisms also play a factor in the 25(OH)D response.

Accordingly, the only way to know for sure about the magnitude of a 25(OH)D response to a loading dose is to do another 25(OH)D lab test at least three days following the loading dose. I had a spare blood spot test kit for 25(OH)D so that's what I did.

The following graphic illustrates the serum cholecalciferol and 25(OH)D response to a single 150,000 IU oral loading dose of vitamin D3 compared to a maintenance dose of 5,000 IU/day.

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As you can see, the Cmax (maximum serum concentration) of 160 ng/mL for cholecalciferol ocrurred a little over 24 hours from the 150,000 IU oral loading dose and the 25(OH)D Cmax of 50 ng/mL occurred three days after the initial oral loading dose.

Hope this helps...

Take care,

V/R, Batch

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« Last Edit: Feb 29^th, 2016 at 5:39pm by Batch »

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: Is this my new "norm"? Reply #10 - Feb 29^th, 2016 at 8:56pm Judy, A quick check of the pollen count in your area indicated moderate levels last week. If you're concerned about getting too sleepy taking Benadryl, take a single 25 mg tablet at bedtime. Take care and please keep us posted. V/R, Batch
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Hoppy

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Re: Is this my new "norm"?
Reply #11 - Feb 29^th, 2016 at 9:01pm

Batch wrote, The rule of thumb that I use to obtain a desired 25(OH)D response with a loading dose is based on several studies using single oral loading doses of 300,000 IU, 500,000 IU and 600,000 IU of vitamin D3.

The response in these cases was measured from 25(OH)D baseline concentrations below 30 ng/mL and it works out to an average of 10 ± 3 ng/mL gain in 25(OH)D serum concentration for every 100,000 IU of oral vitamin D3 taken.

30x10000iu/day, 50x10000iu/day, 60x10000iu/day of vitamin D Questioning

Hoppy.

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« Last Edit: Feb 29^th, 2016 at 11:43pm by Hoppy »

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Batch

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Re: Is this my new "norm"?
Reply #12 - Mar 1^st, 2016 at 9:05am

Hoppy, I think I need to put on my glasses... Your numbers are correct. I suspect they used the 50,000 IU vitamin D3 capsules from Bio-Tech.

See the following link for details on the single 600,000 IU oral dose of vitamin D3:

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Effect of a single oral dose of 600,000 IU of cholecalciferol on serum calciotropic hormones in young subjects with vitamin D deficiency: a prospective intervention study.

Take care,

V/R, Batch

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« Last Edit: Mar 1^st, 2016 at 1:36pm by Batch »

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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thierry

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Re: Is this my new "norm"?
Reply #13 - Mar 2^nd, 2016 at 1:23pm

Hi Batch,
I hope you're well.
Always love your detail and precise replies and posts.
Thank you for the useful info about ramping up the D3 and the figures around it. As always, is useful to know as much as possible.
I'm guessing that, for me, as I am not on the heavy side but rather the opposite, my D3 levels would go up quicker than 3ng/ml per 100000iu once past the 80ng/ml.
All the best

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« Last Edit: Mar 2^nd, 2016 at 1:24pm by thierry »

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Batch

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Re: Is this my new "norm"?
Reply #14 - Mar 2^nd, 2016 at 6:00pm

Hey Thierry,

Thank you for the kind words. We're all in the CH cohort together so I try to be as objective and as accurate as possible in presenting information like this.

Joyce and I are doing just fine... You're likely correct in saying your 25(OH)D response to a 100,000 IU vitamin D3 loading dose will be higher than 3 ng/mL starting around a serum concentration of 80 ng/mL (200 nmol/L). Body weight and BMI both play a role, but there are likely other factors that can also come into play.

The best way to know for sure is to anchor the curve with two 25(OH)D lab tests, one before and the second at least 3 days after a vitamin D3 loading dose.

Take care and thanks for the support.

V/R, Batch

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