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Hey Everyone New Here (Read 11097 times)
Raww
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Re: Hey Everyone New Here
Reply #25 - Mar 1st, 2016 at 2:55pm
 
Wow Batch posted on my first ever forum post here Smiley

Okay well my update, I went to see the neuro today and finally got the oxygen prescribed, so few days wait for that.

Then told him I stopped taking lithium the day before, and explained the side effects. But he wants me to carry on regardless for 4 weeks on 600mg because Lithium is the only option and apprently the horrible side effects will settle down? :S He also claims that lithium doesn't always work on reducing cluster headaches straight away?

But anyway... Smiley when I got home my D3 and omega3 was delivered. Just realised I need the other vitamins as well but just ordered 2 as a test to see if it worked for me. Im guessing I need the magnesuim tho.

Well wish me luck everyone with hopefully maybe a full nights sleep with no attacks Smiley
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Peter510
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Re: Hey Everyone New Here
Reply #26 - Mar 1st, 2016 at 3:15pm
 
Get all the Vitamins recommended by Batch. It's the best way to give it a proper chance of working.

Peter.
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thierry
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Re: Hey Everyone New Here
Reply #27 - Mar 2nd, 2016 at 12:32pm
 
Hey Raww,
As you say, You need the magnesium, otherwise you'll end up depleted. A normal level of magnesium in your body is necessary to maintain a good mental health and muscles health (amongst other things). If you are low in mag, you'll get cramps.
When doing the D3 loading doses -as per Batch- you should ramp up the mag to 6 or 800mg on the days you take 50000iu D3.
Like Peter says above, go ahead with the D3 regimen with all the ingredients, you won't regret it. Do exactly as Batch says and you'll soon be grateful you did. I and many more are.
All the best
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« Last Edit: Mar 2nd, 2016 at 12:34pm by thierry »  
 
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Raww
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Re: Hey Everyone New Here
Reply #28 - Jul 12th, 2016 at 5:21am
 
Hey I am back. Sorry about the thread necro I have been away awhile and wasnt sure to start a new one or just post on my existing one.

I finally got oxygen off Neuro and wow it works well Smiley

Also tried D3 for a month and it had no noticable effect Sad

As for preventative he started me on pizotifen which has seemed to work magic. According to neuro doesnt work for everyone but for some it works amazingly well. But the beast always wins it seems Sad 

I went back to work to try and get on with my life and managed a week before I could hardly walk.

I am constantly tired, every time i eat any food I need to sleep or lie down otherwise I just collapse. And my whole body aches and my mind is completly foggy and tired as well.

I wasnt sure what it was until i accidently missed a dose last night. I feel so much better now, went for a long walk in the park ate food feel really happy and positive with loads of energy. But now I know I need to poison myself with this pizotifen stuff again otherwise headaches will come back.

Life is not fair lol. A choice between horrible pain or even worse horrible pain.

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Peter510
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Re: Hey Everyone New Here
Reply #29 - Jul 12th, 2016 at 9:35am
 
Hey Raww,

Good to see you back.  I was just reading back on earlier posts and I'm delighted to hear that  you got the O2 sorted and it's working well for you.

Sorry to hear that the D3 didn't work after a month of trying.

In my case it took a bit longer than that.

Did you have your blood serum level checked at the time? If so, what was the result?

I'm trying to establish if it needed a bit more time or an adjustment in the initial loading doses.

Keep well,

Peter.
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Batch
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Re: Hey Everyone New Here
Reply #30 - Jul 12th, 2016 at 10:34am
 
Hey Raww,

Peter made some good points regarding your experience with the anti-inflammatory regimen and vitamin D3.  The 25(OH)D lab test is very important if this regimen isn't working after 30 days... 

Five years experience working with hundreds of CHer taking this regimen tells me there's usually a reason why it's not effective as a CH preventative.

For example, did you take at least 10,000 IU/day vitamin D3 and all the cofactors at the suggested doses as listed in the following link? 

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Did you try the 2-Week or 4-Week vitamin D3 loading schedule?  Did you try the Benadryl (Diphenhydramine)?

If you haven't tried all of the above, I'd give this regimen a second try.  It should provide relief and in the proces, beat the onerous side effects caused by the pizotifen you're already experiencing.

Take care and please keep us posted.

V/R, Batch
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Raww
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Re: Hey Everyone New Here
Reply #31 - Jul 12th, 2016 at 11:11am
 
Hey Batch,

I tried taking about 10 of the 5000 D3 tablets a day because i was desperate and wanted results. I thought overdosing on D3 cant be bad Cheesy

I took a pic of the tablets I got but its to big to upload.
Here are the links to the things I bought.

bulkpowders.co.uk/vitamin-d3-tablets-5000iu.html

bulkpowders.co.uk/complete-multivitamin-complex.html

bulkpowders.co.uk/super-strength-omega-3-softgels.html

bulkpowders.co.uk/magnesium-bisglycinate-tablets.html

So I was taking one of each of the others and 10 x D3 tablets.

So have I got this right?


Also I can get D3 tests done when i see GP in August.
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« Last Edit: Jul 12th, 2016 at 11:14am by Raww »  
 
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Batch
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Re: Hey Everyone New Here
Reply #32 - Jul 12th, 2016 at 9:24pm
 
Hey Raww,

Thanks for the update and additional info on the supplements you take.  The 2-Week and 4-Week vitamin D3 loading schedules each call for 600,000 IU taken over two or four weeks.  This should result in an average 25(OH)D response of 60 ng/mL (150 nmol/L) on top the staring/baseline 25(OH)D serum concentration.

The following chart illustrates the starting 25(OH)D serum concentration reported by participants in the anti-inflammatory survey prior to start of regimen.  It represents the normal bell shaped distribution curve.

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The odds are your starting 25(OH)D serum concentration fell between 13 and 33 ng/mL (32 and 55 nmol/L).  Accordingly, if you completed either the 2-Week or 4-Week vitamin D3 loading schedule, your 25(OH)D serum concentration would have been 73 to 93 ng/mL (182.5 to 232.5 nmol/L).  It will be interesting to see your lab results.

You should note that your 25(OH)D serum concentration will drop rapidly as soon as you stop taking vitamin D3 as 25(OH)D has a half-life of two to three weeks.  In other words, if you stopped taking vitamin D3 with a 25(OH)D serum concentration of 73 ng/mL (182.5 nmol/L)... three weeks later it would be 38 ng/mL (95 nmol/L).  Moreover, we need to maintain a 25(OH)D serum concentration of at least 80 ng/mL (200 nmol/L) in order to experience a lasting CH pain free response to this regimen.

The rest of your supplements look about right except I would switch to a liquid soft gel form of vitamin D3, add the 3-month course of vitamin B 50 complex, and start a week to 10 day course of a good first-generation antihistamine like Diphenhydramine (Benadryl).  . 

The powdered form of vitamin D3 may be just fine...  However, as vitamin D3 is fat soluble, the liquid soft gel form of vitamin D3 may have a higher bioavailability. 

Regarding Pizotifen...  It is widely used as prophylaxis in children with migraine, but there are no studies listed in clinicaltrials.gov assessing its efficacy in preventing migraine much less cluster headache.  A review in the BMJ Clinical Evidence concluded that although pizotifen is almost universally used for paediatric migraine, there is no evidence from well-conducted trials that it is beneficial.  See link below:

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That said, there's a very long list of adverse effects from taking pizotifen.  Accordingly. I'd suggest asking your neurologist about switching to the leading CH preventative, verapamil...

Regarding overdosing on vitamin D3... It's realy hard to do unless there's a problem with the parathyroid glands... 

If someone has hyperparathyroidism, an abnormally high concentration of parathyroid hormone (PTH) in the blood caused by an adenoma (benign tumor) on one of the four parathyroid glands, even 3,000 IU/day vitamin D3 could be too much resulting in hypercalcemia.

Most vitamn D3 experts claim we would need to take ≥ 50,000 IU/day for roughly three months to experience vitamin D3 intoxication as indicated by a calcium serum concentration above its normal reference range, (hypercalcemia).

Then there's Dr Cicero Coimbra, MD, Ph.D, a neurologist in Saó Paulo, Brazil who treats his Multiple Sclerosis (MS) patients with a protocol very similar to the anti-inflammatory regime we take to prevent our CH with a few major exceptions. 

The big differences are he prescribes 1000 IU of vitamin D3 per Kg of body weight a day.  For a sleek rascal like me weighing in around 210 lbs (95 Kg), I'd be taking 95,000 IU/day vitamin D3 on the Coimbra protocol... That dose is 10 times higher than I suggest to prevent CH...

His protocol calls for a complete avoidance of calcium supplements and calcium rich foods (milk, cheese and other milk products).  He also requires his patients drink 2.5 liters of water a day to help flush any excess calcium from the kidneys.

I've spoken with one of Dr. Coimbra's MS patients and she indicated the labs for 25(OH)D are basically useless as nearly all of the 25(OH)D assay methods are only capable of measuring 25(OH)D serum concentrations up to 150 to 165 ng/mL (390 to 413 nmol/L).

It is also important to note that none of Dr. Coimbra's MS patients, (over 2000 of them) have experienced vitamin D3 toxicity/hypercalcemia as long as they stick with the treatment protocol.  95% of his MS patients on this protocol are in complete remission from MS living normal lives with a very good quality of life...

Hope this helps.

Take care and please keep us posted.

V/R, Batch
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thierry
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Re: Hey Everyone New Here
Reply #33 - Jul 13th, 2016 at 1:15am
 
Hi Raww,
You're in good hands here with Batch giving you one to one attention.
Below is a link to a Vit D3 yo can buy and get posted for cheap from US.

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One softgel/day is all you need when you're not taking loading doses.


iherb is a great site for getting all the components of the regimen. It is cheaper than all other places i looked into.

All the best
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