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Confused about my Cycles (Read 2297 times)
OwenCT
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Confused about my Cycles
Oct 18th, 2018 at 5:05am
 
Hi I’m a cluster headache suffferer from Cape Town South Africa. This is my 1st post, I’ve been following the threads since the beginning of the year.
I have been diagnosed 5 months ago by my Neuro with CH. He put me on 240mg verapamil. I asked about oxygen and he refused, saying it's dangerous.
I have just endured a 5 month cycle (autumn to spring), getting hits mostly at 1 3 or 5am and then occasionally at other random times day or night. Usually every 2nd night 2-3 times. My only abortive has been Red Bull and it’s worked wonders. Kills CH in 10 minutes.
I take no other meds. I had a remission of 2 weeks then got hit 4 times in one day and then another week later exact same pattern, 4 hits at exactly the same times.
I thought my cycle had ended and now I’m not sure what to think. Is this normal for there to be strange patterns? 2 Wednesday’s in a row 4 CH’s and nothing in between? I’m lost and my life has been turned upside down. 3 neuro visits plus being shunted to endocrinologist and lab tests and no further answers or help. He basically told me to be strong and suffer.
I’m on the Vit D regimen for 4 months now. My VitD levels went from 27 at the start to 74 now. Neurologist told me to stop because he considers that toxic levels. I know from following Batch’s advice that I’m in the right target zone. It hasn’t stopped my CH but it definitely helps with the severity.
It’s my first real cycle and I’m worried that I may be chronic? How do I understand the cycles better? Please help I appreciate your input. TIA 🙏
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Batch
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Re: Confused about my Cycles
Reply #1 - Oct 18th, 2018 at 4:03pm
 
Owen,

Pardon my French, but Ho Lee Shiite! Your neurologist either failed to complete his continuing medical education (CME) on treating primary headache... or he's a Big Pharma stooge... 

Oxygen therapy at 15 liters/minute is listed as the first abortive of choice for CH in every published Standards of Care list of recommended CH interventions.   As far as its safety record, you're thousands of times more likely to be injured or die driving to your neurology appointment than using oxygen therapy at home to abort your CH.  Accordingly, don't buy the comment that "oxygen therapy is dangerous."

Your 25(OH)D serum concentration is still too low. It needs to be up between 80 and 100 ng/mL (200 to 250 nmol/L) for a favorable CH response to dose of vitamin D3.  I would double the magnesium dose from 400 mg/day up to 800 mg/day spllt 400 mg in the AM and 400 mg with the evening meal.  I would also try 3 days of 50,000 IU/day vitamin D3 then drop back to 10,000 IU/day as the maintenance dose. 

If there's no response with a reduction in CH frequency after 3 days of vitamin D3 loading doses, I would get back on the vitamin B complex and start a week to 10-day course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL). 

Again, I'm not sure what rock your neurologist has been living under as a 25(OH)D serum concentration of 74 ng/mL is NOT toxic.  The only valid test indication of vitamin D3 intoxication/toxicity is serum calcium concentration above its normal reference range, a.k.a. hypercalcemia...  For reference, I've run my serum 25(OH)D up as high as 180 ng/mL and my serum calcium remained within its normal reference range so no toxicity... My PCP had no problems with my 25(OH)D this high as long as my serum calcium remained in the normal range.

Diet is also an important part of preventing CH.  Avoid all sugars including fruit juice and all wheat products like bread, pasta, pizza and cookies for at least 30 to 60 days if not longer...  Be sure to drink at least 2.5 liters of water a day.

When it comes to cluster headache... the only thing that's predictable about this disorder is its unpredictability...  In other words, CH patters can and will change... You can bank on that fact...

Take care and please keep us posted.

V/R, Batch
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Peter510
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Re: Confused about my Cycles
Reply #2 - Oct 19th, 2018 at 3:27am
 
Owen,

Welcome.

Get a a new Neurologist. The one you describe has not got the first clue of what he is talking about.

It is important to get who specializes in Primary Headaches.

I came across a guy like yours a few years back...a Professor, would you believe. 3 Consultations and he was fired....and that was 2 too many.

Follow Batch’s advice to the letter....you will not regret it.

Best,

Peter.

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maz
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Re: Confused about my Cycles
Reply #3 - Oct 19th, 2018 at 8:46am
 
I agree with Batch and Peter - you need to find another Neuro.  I also had one like that - he told me women don't get cluster headaches.
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OwenCT
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Re: Confused about my Cycles
Reply #4 - Oct 19th, 2018 at 6:49pm
 
Batch thank you for your reply.
Honestly I trust more in advice I get from this forum more than I do from medical professionals. I suppose one clusterhead understands another better.
I had already decided I had seen the last of the neuro. In fact he admitted he’s seen 2 cluster patients in 30 years.
I will find another Neuro who is a headache specialist.
My CH has improved since I started the VitD regimen. The intensity has dropped off and the PF days began getting longer intervals. But CH has still continued for now 6 months. 3 of them on the VitD regimen.i stopped vitD as a test for 7 days and the CH was far more intense and active. So I believe in it.

This is tough on me mentally too. The anxiety of impending attacks is there with me constantly as is the shadows.
I find this aspect of the CH the hardest. The pain I’ve learned to deal with but the uncertainty of when next is agonizing. Leading a normal life is difficult.

I find The Verapamil ineffective. Is it a necessity if the VitD regimen is working? Presently I only not take 200mg calcium due to possible interactions. 
My magnesium is 1110mg (supplying 200mg elemental) - is this high enough ?
If I can kill a CH with Red Bull effectively (half a 250ml can) then is oxygen really necessary? The truck is to always catch the CH early with Red Bull. (I carry Red Bull everywhere) I’ve survived this far without oxygen.  Admittedly I do have lots of coffee too. I’m consuming a lot of caffeine but it helps and I don’t have any side effects.

Batch, Thank you so much for the advice. I respect the time and effort you put into helping others. I’m sure many more on the forum feels the same.
I will make the necessary adjustments and ensure my 25(OH)D Levels get up beyond 80.
In South Africa a prescription is required for VitD 5000IU and up , Is it like that internationally?
And I will find a competent neuro.

Thanks again to all. I appreciate it.



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Hoppy
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Re: Confused about my Cycles
Reply #5 - Oct 19th, 2018 at 7:26pm
 
Owen, you can get vitamin D3 on line! I get all my vitamins for the regiment from the iherb website.

Cheers Hoppy
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maz
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Re: Confused about my Cycles
Reply #6 - Oct 20th, 2018 at 4:17am
 
I also get my supplies from  iHerb.com.  Don't know if there would be any restrictions re. it comimg in to S.A.  but there's no problem in the UK. Items are really good value and delivery is fast - about 10 days from ordering to the UK.  You may have to pay customs duty.
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Batch
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Re: Confused about my Cycles
Reply #7 - Oct 20th, 2018 at 10:11am
 
Owen,

Thanks for the kind words and great questions.  It shouldn't come as a surprise that most old hand cluster headache sufferers (CHers), by the very nature of this disorder, have more detailed and first hand experience in treating it, what works... and what doesn't... than the neurologists who treat them. 

Having said that, being treated by a neurologist who has seen two other CHers in 30 years practice is actually a plus... particularly if they're willing to work with you and are good listeners.  A neurologist like this is actually ahead of the experience curve for general neurologists. Most general neurologists never see a CHer in an entire career...  Hence the suggestion to fined a headache specialist.

Regarding a daily dose of 10,000 IU/day vitamin D3 as a maintenance dose or starting this regimen with a 12-Day accelerated vitamin D3 loading schedule at 50,000 IU/day for 12 days then dropping back to a vitamin D3 maintenance dose of 10,000 IU/day, the choice is up to you.  The following chart illustrates the serum 25(OH)D response to both dosing schedules.

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Data from the online survey of 257 CHers taking this regimen indicate vitamin D3 passes through the blood brain barrier (BBB) to enter neurons throughout the brain and in particular, the trigeminal ganglia faster and at therapeutic concentrations than its first metabolite, 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D.  The reason for this is quite simple once you understand the molecular chemistry involved. 

The BBB is comprised of tightly packed endothelial cells that line the arteries and capillaries that pass through the central and peripheral nervous systems.  It has windows that allow food, water, other nutrients like vitamins and minerals to enter the brain from the bloodstream and waste products to pass from the brain back into the bloodstream. 

These windows have a size limit that admits molecules with a maximum size/mass of 400 Daltons (Da) or less.  This size limit helps protect the brain from blood borne bacteria.  The vitamin D3 molecule has a molecular mass of 385 Da so it passes through the BBB without too much trouble.  25(OH)D is larger by one hydroxyl molecule [OH] and it has a molecular mass of 400 Da so passes through the BBB only slower. 

Once inside neurons, enzymes developed by magnesium, hydroxylate (add [OH] groups) to the vitamin D3 molecule at the 1st and 25th position giving us 1,25(OH)2D3, the genetically active metabolite. 1,25(OH)2D3 in turn, attaches to a vitamin D receptor (VDR) on a DNA strand and this initiates the genetic expression that helps prevent CH. We see the results of all this in the following chart illustrating the time to respond in days following start of the anti-inflammatory regimen.

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Regarding verapamil... all I can say is this...  Most CHers who were taking it, then started the anti-inflammatory regimen and found it effective in reducing the frequency of their CH or stopping them completely... eventually stopped taking verapamil.

Regarding oxygen therapy as a CH abortive...  After more than 25 years with CH, having a CH without oxygen therapy is like bleeding without a transfusion...  If used properly with hyperventilation, oxygen therapy is 95% effective with average aborts running around 7 minutes as illustrated in the following graphic from a study I ran in 2008.

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7 minute aborts beats the heck out of an hour of agony...

Take care and please keep us posted.

V/R, Batch
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Mike NZ
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Re: Confused about my Cycles
Reply #8 - Oct 21st, 2018 at 5:07pm
 
Yes, oxygen is dangerous. I was told by a nurse that it is so dangerous that they try to get all their patients totally off it as soon as they can. She then looked confused when I told her that the only patients not breathing it were in their morgue.

But being serious, it is dangerous. Be careful lifting heavy cylinders to avoid risks of putting your back out. Make sure you keep them where they can't be knocked over and they can hurt or knock stuff over. And once D3 gets working you have to do that ultra dangerous job of dusting them from time to time.

Oxygen simply rocks for killing off CHs. With 25lpm I got mine down to around 3 minutes, which is better than 10 minutes for a Red Bull. The quicker it is killed the less pain you get and the quicker you can recover to get back to normal life.

And for verapamil, 240mg is a fairly low dose with many people needing 360-480mg a day for it to be effective.

Did he suggest sumatriptan (Imitrex) injections / nasal spray?

As others have pointed out, it looks like your neuro is well out of date with CH knowledge from 20 years ago, never mind from now. Time to find someone with the skills and experience of working with CH who can make a positive difference.

Patterns and CH aren't too unusual. The hypothalamus is strongly involved with CH and it also is a key component of the bodies internal clock. Which is why some people can get them at the same time each day, etc.

Getting a pattern which is linked to days of the week could also be linked to what you do those days, which could be linked to exposure to triggers or stress. Try keeping a headache diary and see if you spot any meaningful patterns.

Do follow Batch's suggestion about using D3, it can be life changing with 80%+ people seeing improvements and many people going CH pain free for multiple years (including myself).

Don't worry about the chronic label, it is just an artificial boundary and a CH just before the cut over to chronic is just the same as one after it and you treat it just the same way.

Yes, CH does have an impact, especially not knowing when the next CH will happen. But getting on top of it with a good preventive to cut down how many CH you get then abortives to kill off any will make a massive difference.

Keep reading and ask all the questions you can think of.
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