Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
PF on D3 for 14 months but the beast is back :( (Read 4596 times)
AbbyP
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 12
London
Gender: female
PF on D3 for 14 months but the beast is back :(
Jun 25th, 2014 at 6:10am
 
Hi,

I have been taking D3 regimen since April last year (2013) and have been pretty much PF although have had a few shaddows and background headaches and have been able to feel when my episodes have been occurring but they haven't been more than a 2 or 3. However yesterday morning I woke up at 5am with a low level one but enough for my husband to get the o2 cannister up from the cellar. It disappeared almost immediately so I hoped it was just a solstice blip... However, last night I felt one coming on just before bed time (which was my old pattern), so o2 again and afterwards went to sleep nervous...

I woke up at midnight with a proper attack and despite staying on the o2 for at least 15 mins after it had finished I had another one about 1.5 hours later... I ended up doing a nasal spray because for me they usually give me a 12 hour reprieve so at least I could get back to sleep...

I am now in a bit of a quandary and not sure whether to up my D3 (which has been 10,000 UI daily for last 6 months) or what else I can try. I am going to phone my GP and get a blood test to check the levels.

To say I am depressed about this would be an understatement because although I suspected they would resurface again at some point, I was hoping it would notbe for a few years...

Any advice would be hugely appreciated.

Thanks

Abby x
Back to top
  
amotley http://facebook.com/abbyparkes  
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: PF on D3 for 14 months but the beast is back :(
Reply #1 - Jun 25th, 2014 at 10:47pm
 
Quite a few people have noticed something similar when the body is using more D3 than normal due to things like infections, injuries, etc. Anything like this happening?

Back to top
  
 
IP Logged
 
AbbyP
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 12
London
Gender: female
Re: PF on D3 for 14 months but the beast is back :(
Reply #2 - Jun 26th, 2014 at 2:45am
 
Hi Mike,

That may help to explain things - I had a bug last week which floored me and I had to spend 3 days in bed (not easy with a toddler!). My father died suddenly about 5 weeks ago and I had about 4 weeks of family, funerals, memorials, organising, house clearance etc and literally 2 days after it all calmed down I got sick. I assumed it was from exhaustion and stress as no one else I knew had it. It disappeared as quickly as it arrived after a few days, but I am sure that my immunity is compromised as a result of that, and the past few weeks.

Is it safe to just up the dose? I had a blood test at my GP surgery yesterday but wont get the results for another week, and I had another 2 attacks last night before giving in and doing a Zomig nasal spray. I dont like taking them, but I need my sleep more...

Thanks again for your response
Back to top
  
amotley http://facebook.com/abbyparkes  
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: PF on D3 for 14 months but the beast is back :(
Reply #3 - Jun 26th, 2014 at 10:27am
 
Abby,

Sorry the beast is back hovering around and haunting you... A 25(OH)D lab test is clearly in order... and I'm confident you'll be able to send the beast running...

A return of CH symptoms while taking the anti-inflammatory regimen at a vitamin D3 maintenance dose of 10,000 IU/day can happen under some conditions.  The culprit is likely a competing consumer of vitamin D3 metabolites and/or the enzymes involved with vitamin D3 metabolism. 

Viral or bacterial infections, allergic reactions, (pollen can be a problem), a flare up of an immune disorder or trauma from an injury or surgery can all trigger inflammation and an immune system response. 

As our immune system's T cells appear to have a higher priority or need for vitamin D3 metabolites, there is likely an insufficient concentration of 25(OH)D and 1,25(OH)2D3 to prevent CH.

I do burn-down tests of my 25(OH)D reserves by stopping the complete regimen 3 to 4 times a year...  I'm a chronic CH'er and usually take 10,000 IU/day vitamin D3 as a maintenance dose to maintain my 25(OH)D around 80 ng/mL, so this burn down test always results in a return of CH symptoms in 5 to 8 days... 

During the spring pollen season here in the Puget Sound area of Western Washington, (March - May), I need to increase my vitamin D3 intake to an average of 20,000 IU/day to remain pain free.

I've found the following solution to this problem simple and effective.  I use an abbreviated vitamin D3 loading schedule and increase in the maintenance dose to elevate serum 25(OH)D.  This usually results in a cessation of CH symptoms within a matter of hours to a few days.

I take 50,000 IU/day vitamin D3 for two days followed by 40,000 IU/day for five days then drop the vitamin D3 intake to a new maintenance dose of 15,000 IU/day.

Be sure to take at least 400 mg/day magnesium along with the rest of the anti-inflammatory regimen.  Magnesium is essential in the enzymatic processes that metabolize vitamin D3 all the way to 1,25(OH)2D3, the active hormonal form of vitamin D3.

In addition, if your haven't already started the 3-month course of vitamin B 50, it might be a good time to do so.  It will take care of any B vitamin deficiencies...

Take care and please keep us posted.

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
AbbyP
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 12
London
Gender: female
Re: PF on D3 for 14 months but the beast is back :(
Reply #4 - Jun 26th, 2014 at 10:47am
 
Batch you ROCK! Thank you x
Back to top
  
amotley http://facebook.com/abbyparkes  
IP Logged
 
thierry
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 406
Galway, Ireland
Gender: male
Re: PF on D3 for 14 months but the beast is back :(
Reply #5 - Jun 28th, 2014 at 4:47am
 
Hi Abby,
like you I started the Batch D3 regimen early 2013 and have been mainly PF since. However, in the last week, shadows have reappeared. I put this down to pollen and allergens being present where i have started a new job (11 hours/day outside in the countryside). I asked Batch a question a few minutes ago on the "123 days pain free" thread before reading this thread. Now that I have read your thread, I have my answer. I will take 50000iu D3 for 2 days and 40000iu for 4 or 5 days and then stay on 20000iu for the duration of this job. I might be able to reduce this back to 10000iu to 15000iu as the summer fades away and the pollen count in the air will reduce.

I hope you get better soon and that you will become PF again.
All the best   Smiley
Back to top
  
 
IP Logged
 
blacklab
Ex Member



Re: PF on D3 for 14 months but the beast is back :(
Reply #6 - Jun 28th, 2014 at 9:07am
 
hi Thierry and abby,
  please let us know how you both got on with increasing your vit d3 dose.
Its certainly a good reference to work on should the same thing occur to others.
good luck, I hope it brings relief !!

regards
colin
Back to top
  
 
IP Logged
 
AbbyP
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 12
London
Gender: female
Re: PF on D3 for 14 months but the beast is back :(
Reply #7 - Jun 28th, 2014 at 2:31pm
 
Thanks everyone.
I have increased my D3 for the last 2 days but am still having attacks. I have now got some B-50 but am not sure what dose I should be taking.
Also, I am slightly concerned because I had my bloods done and my surgery rang and said that my doctor wanted to see me on Monday to discuss the results! I am therefore worried that my D3 is very high already and that this is just not working for me anymore...
I will let you all know how I get on, but can feel an attack coming so better get on the oxygen
Sad x
Back to top
  
amotley http://facebook.com/abbyparkes  
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: PF on D3 for 14 months but the beast is back :(
Reply #8 - Jun 28th, 2014 at 3:48pm
 
Hey Abby,

Thanks for the update.  One of the vitamin B 50 tablets a day is all you need and you only need to take the vitamin B 50 for three months... If you do have any B vitamin deficiencies taking the B 50 should only take a few weeks to replace them.  The rest of the three months taking the vitamin B 50 will be spent building reserves...

It's good your physician wants to see you...  If he's overly concerned about your 25(OH)D serum concentration, show him a printed copy of abstract at the following link and the attached pdf file...  Ask him for a lab test of your total serum calcium and parathyroid hormone (PTH). 

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

Your total calcium serum concentration should be within the normal reference range and your PTH serum concentration should be at the low end of its normal reference range.

25(OH)D is only a bio-marker of vitamin D3 status and having a 25(OH)D serum concentration above the normal reference range 30 to 100 ng/mL, (75 to 250 nmol/L) is not an indication of vitamin D3 intoxication...

The real indication of vitamin D3 toxicity is a total calcium serum concentration above it's normal reference range. We've a few CH'ers there in the UK maintaining 25(OH)D serum concentrations over 300 nmol/L, (120 ng/L) under a physicians supervision to keep their CH under control... and all of them have reported normal total serum calcium levels...

The study of RRMS patients taking increasing oral doses of vitamin D3 up to 40,000 IU/day for six weeks at each dose helps explain much of this.

Take care, don't worry and please keep us posted.

V/R, Batch


Back to top
  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (545 KB | 0 )

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
pete_batcheller  
IP Logged
 
AbbyP
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 12
London
Gender: female
Re: PF on D3 for 14 months but the beast is back :(
Reply #9 - Jun 30th, 2014 at 6:47am
 
Batch that is SO helpful thank you. I am seeing my doctor this afternoon so have printed everything out and will take it along with me.

The good news is that although I did have 2 clusters yesterday, they were significantly less painful (around a 4 or 5) and I did not use Oxygen to abort because I do believe I get rebounds if I use oxygen. I went to sleep around 10pm, expecting to wake within an hour or so, but I didn't!! So, fingers crossed the increased VitaminD is working...

I will let you know what the blood test results say later.

Thanks again!

Abby   Smiley
Back to top
  
amotley http://facebook.com/abbyparkes  
IP Logged
 
TeeJ2379
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 140
Central PA, USA
Gender: male
Re: PF on D3 for 14 months but the beast is back :(
Reply #10 - Jun 30th, 2014 at 12:47pm
 
My Neuro gave me 3 slips for Vitamin D blood draws.  Warned me I may have to pay for them, but I have them stocked up just in case i starting getting hit again.  I plan to go get tested and see where I am at, and depending on that up my dose.  Last test I was at 95 ng/ml so I should be just fine.  Ask your doc for the same thing.  If you are willing to pay for them, he shouldn't care how many times you get your blood drawn and tested.
Back to top
  

Pain is a wonderful teacher and motivator...
 
IP Logged
 
thierry
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 406
Galway, Ireland
Gender: male
Re: PF on D3 for 14 months but the beast is back :(
Reply #11 - Jul 1st, 2014 at 1:51am
 
Since i woke up last saturday morning with substantial shadows, I took 50000iu D3 (along with the other items on the regimen) on saturday and sunday, then yesterday i took 40000. Shadows have decreased since, no shadows at all last night and woke up shadows free this morning. It seems that the loading doses have taken care of the looming beast  Smiley.  I will continue to take 20000iu for a week or 2, then I'll drop back to 15000iu and see how i get on.
Back to top
  
 
IP Logged
 
AbbyP
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 12
London
Gender: female
Re: PF on D3 for 14 months but the beast is back :(
Reply #12 - Jul 1st, 2014 at 3:13am
 
Hi All,

Thierry - that's great that it is working for you too. I have to say, it's now been 48+ hours since my last attack and I am following Batch's recommendation too. Had a really good meeting with my GP yesterday and although he was initially nervous that I was increasing the dose, I gave him the print-outs that Batch sent and as my blood serum level is still normal he agreed that it was OK for me to continue. In addition, I have said to him many times that unless this is actually going to kill me then I am going to continue as anything is better than the beast!!

However, slightly odd because the blood test I had last week had my VitD at 260 which was previously enough to stop the attacks. I am lucky because my doctor considers having to blood test me every 2 months cheaper than prescribing oxygen and zomig to manage my episodes - we are so lucky with the NHS here because my healthcare wont cover CH because it's a chronic condition and as such - a bottomless pit...

Thanks to you all again for your help and support!

Best Abby x
Back to top
  
amotley http://facebook.com/abbyparkes  
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: PF on D3 for 14 months but the beast is back :(
Reply #13 - Jul 1st, 2014 at 3:09pm
 
Thierry, Abby,

Great news!  Knowing how and when to adjust your vitamin D3 intake is an important part of tuning the anti-inflammatory regimen for optimum results... like staying CH pain free.

I'm also impressed with the cost benefit analysis Abby's PCP is using...  The cost of the anti-inflammatory regimen and a few diagnostic lab tests for 25(OH)D is clearly less than the cost of the standards of care pharmaceuticals typically prescribed to control CH.  When you throw in the higher efficacy of this regimen you get the best bang for the buck...  or Pound there in the UK...

For readers here in the US, Abby's 25(OH)D serum concentration of 260 is measured in nmol/L.  That works out to 104 ng/mL for CH'ers here in the US where medical diagnostic labs typically measure 25(OH)D in ng/mL. 

80 ng/mL, (200 nmol/L) is just a target 25(OH)D serum concentration... Some CH'ers will require a higher or lower 25(OH)D serum concentration in order to experience a cessation of CH symptoms.  Moreover, an individual CH'er may find the therapeutic serum concentration varies throughout the year...  Hence, knowing when and how to adjust/tune this regimen is important.

Take care and please keep us posted.

V/R, Batch
Back to top
« Last Edit: Jul 1st, 2014 at 3:11pm 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
pete_batcheller  
IP Logged
 
AbbyP
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 12
London
Gender: female
Re: PF on D3 for 14 months but the beast is back :(
Reply #14 - Jul 3rd, 2014 at 10:09am
 
Hi Batch,

I think I spoke to soon. The attacks returned on Tuesday afternoon and although they're not escalating to a full blown 10, they are still around 6 or 7 and I am having 2-3 per day - untill I take a Zomig.

My dilemma is that I really believe I get rebound headaches from using Oxygen which makes the headaches return within an hour.

I am taking 30000 UI each day still. Should I risk increasing the dose? Do you think it will make a difference?

Thanks
Abby
Back to top
  
amotley http://facebook.com/abbyparkes  
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: PF on D3 for 14 months but the beast is back :(
Reply #15 - Jul 4th, 2014 at 2:05pm
 
Abby,

Crap happens...  Stick with the vitamin D3 loading schedule.  You can also add a little more magnesium and zinc.  Both play a role in the enzymatic processes needed to metabolize vitamin D3 to its active hormonal form.

Regarding oxygen therapy...  Technically, there's no such thing as a rebound HA from oxygen.  We're obviously dependent on oxygen... but not physiologically addicted to oxygen to the point we need more and more of it.

If CH return around 2 hours after an abort with oxygen therapy...  they're just another CH...  If the CH returns in less than an hour after an abort with oxygen...  it was likely a "Klingon," an incomplete abort, or a "re-attack," where you stopped the CH pain with oxygen therapy but not the underlying CH triggering process.

Roughly 30% of oxygen therapy users experience an up-tic in the frequency of their CH for a few weeks after starting oxygen therapy... 

The pilot study we conducted on the demand valve method of oxygen therapy indicates the overall frequency of CH starts dropping after 3 to 8 weeks of continuous daily use...

Now that you've elevated your 25(OH)D serum concentration, the incidence of re-attacks or increased CH frequency should be significantly diminished.

If you want to increase the time between hits while using oxygen therapy as your primary abortive, abort the next hit with oxygen...  then take the Zomig.

Hope this helps.

Take care and please keep us posted

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!