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leomburu

Vitamin D high & Lithium

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Hi everyone,

Wanted to share my experiences as haven't seen this noted on any of the sites I've searched.

to be brief...

1. Lithium disrupted my vitamin D. In addition to feeling awful from a low dose, the relief I found with Vit D was stopped while taking it and resumed when I stopped. Worth considering if you are taking Vit D without success. 

2. Vit D levels are very high now, 343 nmol, & I continue to take 35,000 IU a day, but I'm reluctant to reduce dosage as worried attacks will return. Has anyone else had to maintain very high D levels to stay PF?

3. A very cheeky Christmas question.... I'd love a couple of drinks this Christmas, but alcohol has triggered me in the past. Does the Vit D disarm the triggers, or is that wishful thinking on my part?

 

About me:  I'm ECH, started about 14, I'm now 37. Luckily usually only get it every 2-3 years. Oxygen aborts cleanly but seems to give me rebounds - a huge debt of gratitude goes out to Ben Khan for that one.

This Cluster experience: About a month ago it started up. I had tried the D3 regimen before but this time dosed up high 21,000 IU a day, moving to 35,000 IU, which amazingly worked - Batch is my hero! But I had started taking Lithium at the same time, which apart from making me feel all kinds of awful (nausea, loss of appetite, dizzinness/light headed, and extreme light sensitivity to *both* eyes) my attacks became more frequent and through the night when my pattern is for early morning attacks. Despite being a low /starter dose for lithium, I felt so awful I stopped taking it, at the time not knowing what I was reacting to.  Within a day the attacks started to die down, and then back to attack-free days (small shadows excepted).  When my D levels were tested, I came back at 260 nmol. I dropped down to 21,000 IU a day, but just 3 days of that and I could feel the shadows coming for me, so went back to 35,000 IU - sure enough had an attack a few hours later that night.  I have stayed on this dose assuming the test was wrong, and went for another test 4 days ago - this came back at 343nmol. I'm reluctant to reduce again for obvious reasons but I have now been dosing pretty high for a month.

Any advice or similar experiences?

Thanks

Leo

 

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1 hour ago, leomburu said:

Oxygen aborts cleanly but seems to give me rebounds - a huge debt of gratitude goes out to Ben Khan for that one.

I am guessing that Batch will show up soon to give the most reliable answer to your D3 question.  If not, you can PM him (though I am curious to see his response, so I hope he replies here).

Thank you very much for the lithium info.  I will keep that in mind.

Yesterday, on another thread, I suggested that rebound attacks after O2 aren't a real thing.  Would you mind saying a little more about yours?  In the most recent study of rebounds, the general conclusion was that at proper flow rates and with "better techniques in oxygen application," rebounds were pretty much a thing of the past (they were reported by Kudrow at the very beginning of O2 use, in 1981).  But if you get them, you get them.  Did you stop using O2, or have you just accepted the likelihood of rebounds?  And did Ben Khan tell you about rebounds, or about O2?  Thank you.

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Hi CHfather, 

Thanks for your reply, as always your advice is very much welcomed.


The "rebounds"
My pattern used to be maybe 1 every other day or every couple of days for about a month, always on waking or just prior to, except if triggered. Since using the oxygen to abort the cycles I've had upto 8 a day with a day off being a very rare occurrence. I've assumed it was as if the attack didnt like being aborted, so would keep coming back. 60-90mins after an o2 abort as described below, I'm likely to get another attack, unless at the start of my cycle when it's weaker, it can be upto 8 attacks at its worst, maybe 4 is a "normal" day. My attacks unaborted last maybe 2-3hrs so I happily accepted the "rebounds" and keep using the O2. I assumed they were rebounds but it could well be this is my new pattern. Having read your post perhaps I should be staying on longer than the 3 mins post attack.

I avoided most CH meds for a number of cycles for fear of changing it, but in my last cycle in Dec 2014 it changed anyway - going on for 3 months instead of the standard 1 month, ending perhaps coincidentally at the end of a prednisone taper after gp and neuro refused to administer their own Verap treatment plan.

My O2 abort
At start of attack, on oxygen at 15l/min (higher if possible). I try to do the hyperventilation techniques (think thats also Batch's work?) but never sure if I'm getting them right! Since getting a higher flow regulator can take in more than 25l/min (regulator max) other times struggle to take 15l/min. Stay on O2 for 2-3mins after the pain has stopped at lower flow, c.8l/min.
Aborts are complete within 15 -20mins, with very few exceptions when relief didn't come within 15mins, I've then come off O2, waited 5 mins, maybe grabbed a redbull or started to try prep the sumatriptan, gone back on and aborted.

Ben khan
I was given an oxygen tank over 10yrs ago, but I couldn't get the hang of it. Realising I'd been given a rebreather mask I ordered a clustermasx online. Ben who lived not too far away delivered it in person and showed me how to use it. O2 has never failed me since and I much prefer his mask to the newer ones. I've not seen his name in a forum for a long time but wanted to say thanks for his help and wise words, in case he was out there. Apologies I wasn't very clear on that!

Thanks & apologies for the lengthy post if you've read this far!

Leo

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Thank you for all this info.  

I'm not sure it's pertinent here, since your O2/rebound pattern is older than this and the D3 seems to have corrected any effects from lithium, but lithium is notorious for creating rebound attacks when its use is discontinued. Some medical literature suggests only prescribing it for chronic CH since the rebounds from getting off it are so bad (and the side effects in general are so typically noxious).

I also had a hard time understanding Batch's hyperventilation instructions, but what I think is correct is that there are a series of very short, very deep inhale/exhale "cycles," each lasting just a few seconds, and that you do ten of those cycles with room air, in a total of about 30 seconds, before you start on the O2.  I'm going to paste below what I think is his most recent writing about this.  You might not have seen his "redneck reservoir bag" approach; these instructions are part of it (link to it is below).

Yes, it could be that staying on the O2 longer after an abort will hold off some subsequent hits.  I think "5-10 minutes" is the standard advice.

1 hour ago, leomburu said:

I avoided most CH meds for a number of cycles for fear of changing it, but in my last cycle in Dec 2014 it changed anyway

This is the doggone thing that makes anecdotal evidence so challenging. My daughter (the person in my family with CH) never took any CH meds except, for a short while, gabapentin, for the first ten years she had CH.  She didn't even have oxygen.  But her cycles got longer and worse, pretty much year after year.

Nice story about Ben Khan.  I wonder how many people with CH are indebted to someone who reached out a hand to them. I know that as a family member, the kindness that Bob Wold extended to me about 8 years ago will never be forgotten (and still brings some tears of gratitude to my eyes).  Somebody here might be in touch with Mr. Khan.

Here's Batch on hyperventilating when using the "red neck" method. You can see the whole file, with details about using the redneck bag,  here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/   When you've hyperventilated for 30 seconds (ten complete cycles) per the procedures below... [These are the procedures] The exhale part of this procedure is important.  Exhale rapidly until it feels like your lungs are empty...  They're not.  At this point you do the abdominal crunch and hold the chest squeeze until your exhaled breath makes a wheezing sound for a second then throw your shoulders back and inhale as deeply as possible then repeat the exhalation with a crunch in one fluid motion.  Ten of these complete cycles in 30 seconds should start to push your body into respiratory alkalosis... (Remember the movie "The Andromeda Strain") On the tenth exhalation, hold the squeeze/crunch until your breath makes a wheezing sound for at least 3 seconds... or until you stop wheezing...  This will squeeze out another half to full liter of exhaled breath that's highest in CO2. 

You'll know you're doing this procedure correctly when you feel a slight tingling or prickling on your face, lips, hands, lower legs and feet.  This is called paresthesia.  

Edited by CHfather
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19 hours ago, leomburu said:

The "rebounds"
My pattern used to be maybe 1 every other day or every couple of days for about a month, always on waking or just prior to, except if triggered. Since using the oxygen to abort the cycles I've had upto 8 a day with a day off being a very rare occurrence. I've assumed it was as if the attack didnt like being aborted, so would keep coming back. 60-90mins after an o2 abort as described below, I'm likely to get another attack, unless at the start of my cycle when it's weaker, it can be upto 8 attacks at its worst, maybe 4 is a "normal" day. 

As someone who hasn't aborted with oxygen yet, this kinda terrifies me.  My cycles *used* to be 4 - 8 / day but this cycle has been a so-far very manageable 1/day - 1/every other day.  

The idea that I could make it more frequent is just.... I know it's so hard for us to determine causality or even correlations here, since we all try and do so many different solutions, but this thought re: o2 gives me serious pause about using it. 

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2 hours ago, fella1234 said:

As someone who hasn't aborted with oxygen yet, this kinda terrifies me.  

Fella1234 please don't be worried about using oxygen. I can't begin to tell you how much less I fear the attacks if I have my tank.

I've had just one attack go full blown in over 12 yrs and only recently because Ive no emergency tank in Australia like I do in uk. Like most people on here I've tried quite a few meds, most didnt help me, some gave me nasty side effects, so hadnt been using any since o2, with the recent exceptions of trying to break the start of this cycle and end the last one, only when I realised the little CH b@stard had changed anyway, despite me believing that we had a deal on cycle length. 

If you've not tried d3, I'd definitely give it a go. For me it's worked quicker than prednisone in stopping the attacks - PF nearly 3 weeks with only 1 breakthrough when I dropped dose. 

*if* o2 gives me rebounds and its not just a pattern change - i still take it anyway! The thought of enduring a full 3hr attack compared to relief within 15 min's! 

If i was rebounds it could be that my technique is poor.

And it could just be what happens to me wouldn't happen to you. I'm an ECH with what I believe is a non standard pattern and response.

Im sure others will share their support for oxygen, but if you're busting I assume O2 is one of your better abortives anyway? I'm sorry I've scared you, absolutely not my intention, please give the O2 a go. 

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 I appreciate the go ahead! I am ECH as well, I have never used 02 before, but I'm currently awaiting delivery of my first tank in the next 15 minutes.

 

 My current treatment is taking vitamin L in 4 day increments, due to Christmas coming up, and I have been on the vitamin D regimen for about a week and a half.  I have not been taking Vitamin K with it, because I had to order it (wasn't at Costco or grocery) but have taken everything else.  So far, no change, but I'm going to up my dose soon here.  I'm 6' 4" and about 230 lbs ( or 190 cm and 105 kg for those of us on the correct system ^_^) so I'm guessing I'll need more than the usual 10k ius anyway.  

 I appreciate the feedback, I'm dancing around my house waiting for this O2 tank. I've never used it as an abortive before, but have heard such great things about it from everybody. 

 

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I tried Vit D in a weak cycle (every couple of years I get a weak version of CH on the left instead of right, which needs a can of redbull at most) at 10,000 IU a day but I can't say it did anything. But this time round I went straight to 35,000 IU a day and it did the trick. I'm female (parents thought it would be fun to call me Leo!) c.9 stone, 5'3, so you might need to up the dose more. I'm not taking the full regimen - notably Vit K or Vit A as couldn't find it easily, and I've dropped the calcium, but probably picking those up through diet, but am taking fish oils, magnesium, C & B complex. I often take antihistamines and nasal spray to help with allergies, whatever they are, but have since switched to Polaramine a 1st gen antihistamine (as per Batch) and nasal spray without alcohol in it - nasonex.

Hope you've got a good mask coming with your tank too. Let us know how you get on. 

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16 hours ago, leomburu said:

my parents thought it would be fun to call me Leo!

Did you know that there was a time, not so very long ago, when "leonine features" were considered to be a characteristic of people with CH? A doctor suggested that in 1972, but it was still being discussed in the literature in the 1990s (https://www.ncbi.nlm.nih.gov/pubmed/1468913?dopt=Abstract), and still appears in some CH-related information today.  It seems ridiculous now (to me at least), along with other once-accepted "truths" such as that women don't get CH (they're just overreacting to migraines); that people with hazel eyes are predisposed to CH; and that people with CH tend to be substance abusers.  I think these things were probably all well-intentioned efforts to get a better handle on CH, but of course they all also led to harm in terms of getting an accurate diagnosis.

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A) Haven't seen Ben Khan's name mentioned in a long time...tis unfortunate as he is a hero in my eyes as nearly a Father of clustermasks and CH abort with O2. Best to you Ben...I hope you are well and PF.

B') Early in my use of O2 as an abort I would sometimes get "rebound" hits 20 minutes after the initial abort...twas frustrating, annoying, scary, and a waste of O2....but it passed. Batch has postulated that it has to do with either failure to: completely abort hit (not on O2 long enough) or lack of "toning" of the blood vessels involved in constriction and therefor relief from a CH hit...ya gotta train 'em to constrict....that's good enough for me.

Best

Jon

Edited by jon019
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On 24/12/2017 at 6:22 AM, jon019 said:

lack of "toning" of the blood vessels

Oh yeah I can imagine this, lack of toning is a problem I definitely have in other areas too!

Love hearing that Ben khan was good to you too!

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CHFather that was a good one & the first message that came through on Christmas day! Never heard about the leonine features but googled it to find not only do I probably look like a lion but as a woman probably also look very masculine and tall! 

Merry Christmas & pf wishes to you all!

Leo the lion

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Hey Leo,

I call my grand daughter "Fred" a.k.a. Winefred...  3.  She's been bathed in maternal vitamin D3 since conception as I encouraged my daughter to start the complete anti-inflammatory regimen in 2012.  I'm also familiar with the lion bit... but not with a linkage to CH...  My middle name is Lyon...

Your 25(OH)D serum concentration at 343 nmol/L (137 ng/mL) is fine as long as your serum calcium remains within its normal reference range and your PTH is in the lower third of its normal reference range.  Be sure to talk with your PCP about getting these two lab tests at the next opportunity. 

For reference, I'm a chronic type CHer and have maintained my 25(OH)D at an average of 140 ±50 ng/mL for the last 3 years.  Be sure to start the vitamin K2 and I wouldn't worry about the vitamin A..  Just eat a few carrots a week and you'll be getting all the beta carotene you need.  I'm not a fan of lithium...  Minimal benefits and maximum side effects made it a bad choice with too much risk for me to even consider.

If you haven't already done so, download a copy of the anti-inflammatory regimen at the following link and be sure to discuss it with your PCP when you go in for the additional lab tests.

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Take care, have a Very Merry Christmas and Happy New Year free of CH.

V/R, Batch

 

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Thanks Batch, who would gave thought having a lion names predisposes you to ch! 

Its reassuring to know I'm not off the charts just yet! I'll get the k2 and the tests done soon as I can.

Incredibly grateful for your advice and the regimen. Hope you, your family and Fred (good to have a nickname, shows you are loved!) have a lovely Christmas & all the best for the year coming up.

Leo

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On 23/12/2017 at 2:09 AM, leomburu said:

 

I tried Vit D in a weak cycle (every couple of years I get a weak version of CH on the left instead of right, which needs a can of redbull at most) at 10,000 IU a day but I can't say it did anything. But this time round I went straight to 35,000 IU a day and it did the trick. I'm female (parents thought it would be fun to call me Leo!) c.9 stone, 5'3, so you might need to up the dose more. I'm not taking the full regimen - notably Vit K or Vit A as couldn't find it easily, and I've dropped the calcium, but probably picking those up through diet, but am taking fish oils, magnesium, C & B complex. I often take antihistamines and nasal spray to help with allergies, whatever they are, but have since switched to Polaramine a 1st gen antihistamine (as per Batch) and nasal spray without alcohol in it - nasonex.

Hope you've got a good mask coming with your tank too. Let us know how you get on. 

Hi Leo,

I'm interested in what you've said here.  Out of interest, why did you drop the calcium?  I haven't had any notable success with D3 so far.  I've started and stopped a few times. At one point, it felt like it might be making things worse and I've wondered whether the calcium could be a problem.  After all, verapamil is a calcium channel blocker so presumably you wouldn't want more calcium in your system (this is my fuzzy, completely unscientific take on things).

Brief history (somewhat unusual) - I'm in the UK. I originally had quite typical ECH from 1992 - 1999.  I then began to have bouts of shadows around 2000 that would strike perhaps a couple of times a year but didn't bring attacks.  My shadows became chronic around 2004 and I ended up using verapamil permanently until 2008-2009.  (Admittedly, I was back in remission by 2007 but I decided to taper off the verapamil very VERY slowly.)  Between September 1999 and April 2004 I only had 4-5 full-blown CH attacks and, with one exception, these came out of the blue and not during a bout of shadows.  During bouts of shadows since then, I've experienced what seem to be low-level attacks but I don't normally abort these. 

I had a fantastic 11-year remission, only punctuated with a short bout of shadows in 2010.  This ended in June this year and I've been experiencing shadows and low-level attacks since then.  These have worsened in recent weeks and I've finally decided to go back onto verapamil to see if it helps, but I'd like to try and combine it with D3 if there are no contradictions.

 

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23 hours ago, Roadie said:

Hi Leo,

I'm interested in what you've said here.  Out of interest, why did you drop the calcium?  I haven't had any notable success with D3 so far.  I've started and stopped a few times. At one point, it felt like it might be making things worse and I've wondered whether the calcium could be a problem.  After all, verapamil is a calcium channel blocker so presumably you wouldn't want more calcium in your system (this is my fuzzy, completely unscientific take on things).

Hey Roadie

That does sound like a weird cycle! Not sure how the Vit D3 regimen works with Verapamil, maybe you just drop the calcium? I'm sure someone here will know. How high a D3 dose were you using?

I dropped everything but the D3 after I got ill from Lithium. My Magnesium & Calcium tabs were combined, but believing Mg was the most important co-factor I bought it separately adding that back in to the D first, then slowly re-introducing the others. I decided that given the most likely risk from taking Vit D is the calcium excess I wasn't losing anything by skipping it.  It's only after posting here that I have thought that the side effects I experienced may have been hypercalcemia, caused by the lithium on top of the calcium & D3.  It is admittedly a jump that can't be proven given I've only today gone to get my PTH & Calcium tested, and seems unlikely given it was both a short time period and low dose of Lithium & Calcium, but it did seem the best match for my symptoms, particularly the sensitivity to light and smells.

Having tried the D3 regimen in previous 2 cycles with no results to my current attack free streak, I would recommend giving it another go and would be interested to hear your updates if you decide to try again. 

Happy New Year & PF wishes in advance!

Leo

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On ‎12‎/‎29‎/‎2017 at 3:37 AM, Roadie said:

decided to go back onto verapamil to see if it helps, but I'd like to try and combine it with D3 if there are no contradictions.

This is a small but important issue -- you want to take the calcium about 8 hours apart from when you take the verap.

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Hi CHFather.  Thanks for this advice - very helpful.

Hi again Leo.  That's really interesting to hear that it took you three attempts (and three bouts) to get the required results.  I know one thing - there's no harm in trying.  Compared with the alternatives, the D3 is such a great choice... if you can get it to work.

I'm currently taking verapamil and using the D3, minus calcium.  I'll keep you posted but it'll be hard to know what's working if my symptoms do improve, given that I'm using both.  I've also just realised that I'm only on 240mg of verapamil daily.  I was on nearly 700mg a decade ago so I might have some way to go.  Whats more, I'm more than 6 months into this bout but still have not had a real humdinger of an attack.  My attacks have been very mild and are normally spaced out by a couple of days (although I've had short periods where they've been daily). My diagnosis remains "probable cluster headache" but there's every chance it could be something else.  It's certainly nothing like my first few bouts.

Many thanks for your advice.  I'll keep an eye on this page.

 

 

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On 12/23/2017 at 7:22 PM, jon019 said:

A) Haven't seen Ben Khan's name mentioned in a long time...tis unfortunate as he is a hero in my eyes as nearly a Father of clustermasks and CH abort with O2. Best to you Ben...I hope you are well and PF.

 

Now there's a name from the past.  I'm sure I met Ben at a CH meeting in either Birmingham or London, but years ago.  I hope he's well.

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