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New Member - in middle of cluster currently (Read 4865 times)
Lara.Purdue
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New Member - in middle of cluster currently
Jun 23rd, 2017 at 4:35pm
 
Hi everyone,

First time posting, been suffering with ch for 7-8 years.  Let me start by saying this board is extremely helpful and I appreciate any input on this one.

Like many, I had trouble diagnosing ch.  Everyone kept telling me it was a migraine and prescribed Fiorcet which was ineffective.  The 'attacks' were like alarm clocks, waking me up twice a night at its worst, and I had 3-4 ch a day for the first few weeks.  After I finally saw a neurologist he immediately knew it was a ch (left side only, behind the eye, eye would water and nose would run, and extreme pain that I've never had in my life).  I'm a man and I was 24 when they were first started.  Once the Dr. gave me prednisone (and this was after 7-8 weeks of suffering) the chs began to go away.  He then put me on gabapentin /neurontin as a sort of preventive but within 1-2 weeks I couldn't handle the side effects and told my Dr. I would go without a preventive. 

Since then the clusters come every 7-8 months as 'shadows'.  I'd say every year or year and a half I have a 2-3 weeks of intense chs.  As such, I have a semi-routine for when the intense attacks occur.  I take 4 10mg prednisone for 3 days, 3 10mg for 3 days.. and so on.  Along with this tapered dose of steroids I take 100mg sumatriptan as needed.  I'm been told not to take more than 2 a day. 

I began the prednisone on the second day of this cluster.  The headaches went away for about a day and a half.  After the attacks returned, I got a prescription for 100mg sumatriptan.  I felt an oncoming cluster and took a pill.  The headache never came.  That happened twice.  Since then, the sumatriptan only seems to help after 20-30 minutes of an intense cluster.  It does seem to have a positive effect still, and it's the only medication that's been able to shorten the cluster's length (down from its usual 1hr or 45mins). 

However, yesterday and today have been pretty unbearable.  If I'm not in the middle of a cluster I'm having an intense cluster 'shadow', which I know is simply a mild ch.  Today - I've probably had 30-45 minutes of pain free time.  I took the sumatriptan this morning at 12:30am when I was awoken by a ch and I'm hesitant to take another one until its later in the day (cause I'm only allowed 2 per day).  I saw a Neurologist for the first time in 6 years in Cambridge, MA, USA yesterday morning and he recommended exercise, 81 mg aspirin every day, and continue to use the sumatriptan at a max 2 per day.  I'll just kinda have to eat the pain otherwise (although I asked about oxygen he said his patients didn't have much success with o2).

My question is (sorry for the extremely long post): if my remedy is take 100mg sumatriptan twice a day for 2-3 weeks, does that seem like too much?  Are there more effective remedies that would mitigate the horrific intensity of the chs that have been waking me up every night for the last few days?  Lastly, this board seems to be of the opinion that o2 does work for most people, is it worth it to go to urgent care and ask to try the oxygen tank to see if it mitigates the pain?  I've never actually gone to the ER or urgent care for this.

Any help is greatly appreciated,
Lara

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MDR
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Re: New Member - in middle of cluster currently
Reply #1 - Jun 23rd, 2017 at 4:53pm
 
GET THE 02 and read up on the vitamin d-3 regiment in the medication section.

Mark
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Re: New Member - in middle of cluster currently
Reply #2 - Jun 23rd, 2017 at 5:33pm
 
G'day Lara, and sumatripan pills are generally regarded as too slow-acting to be of much help in CH.

Many prefer the much faster-acting injections, or there's even a nasal inhaler.

There's some buttons down the left side of screen that may interest you. One is the Imitrex Tip about the self-injections, the other is all about Oxygen which is a godsend to many.

Let us know how you get on and we'll always help with any questions you may have.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Lara.Purdue
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Re: New Member - in middle of cluster currently
Reply #3 - Jun 23rd, 2017 at 5:51pm
 
Thanks Mark and Brian for the suggestions.

I'm sure if the attacks continue through the weekend I'll be calling my Dr. for a prescription for o2 on Monday.  Is there a renting option, I wonder?

I'm reading up on the vitamin d-3 regiment and I'm absolutely overwhelmed.  I've never used supplements or vitamins on a daily basis and especially not in this quantity.  First question - is starting a vitamin d-3 regiment in the middle of a cluster as effective, even after I've begun my prednisone taper routine?  If the vitamins don't have many side effects or don't contradict any of my current meds, I'll probably be running to the drug store within the hour.
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Re: New Member - in middle of cluster currently
Reply #4 - Jun 24th, 2017 at 5:00am
 
Hello Lara and welcome to CH.com.

You can start the D3 Regimen anytime... the sooner the better.

It is advisable to discuss with your Family Doctor first, in case there are potential contraindications with any other medication you may be on.

It is also sensible to have your blood tested for D serum levels (25OH D) at the start of the Regimen and then follow up tests every 3 months for the first year. In that way you will know your starting point, when your levels reach the desired target and to ensure you maintain the correct maintenance dose after the initial loading schedule.

To assist both you and your Doctor in managing this process, you should print a copy of the following document for your Doctor.

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

This might sound a little convoluted, but remember, over 80% of those of us following the D3 Regimen are experiencing benefits, with the majority being pain free for significant periods of time (years rather than weeks or months).

So, what have you got to lose ?..........Only your Headaches!

Best,

Peter.
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Re: New Member - in middle of cluster currently
Reply #5 - Jun 24th, 2017 at 6:08pm
 
Lara wrote, First question - is starting a vitamin d-3 regiment in the middle of a cluster as effective, even after I've begun my prednisone taper routine?

Hi Lara and welcome, the answer to your ? is, it doesn't always work for everyone when in a cycle, it didn't for me, but by not giving up on it, I've been CH free for the past 5yrs after being episodic for 43yrs.

Cheers Hoppy
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Mike NZ
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Re: New Member - in middle of cluster currently
Reply #6 - Jun 25th, 2017 at 2:14am
 
Hi Lara and welcome

Lara.Purdue wrote on Jun 23rd, 2017 at 4:35pm:
I saw a Neurologist for the first time in 6 years in Cambridge, MA, USA yesterday morning and he recommended exercise, 81 mg aspirin every day, and continue to use the sumatriptan at a max 2 per day.  I'll just kinda have to eat the pain otherwise (although I asked about oxygen he said his patients didn't have much success with o2).


An interesting set of recommendations from your neurologist which isn't quite the normal set of recommendations we see. Although it is possible that he is recommending some based on your full medical history.

With exercise some people can find it can help with a CH and others find it to be a strong CH trigger, so do so with a degree of caution, but otherwise exercise is healthy in general.

The very precise 81mg of aspirin isn't something I've seen ever recommended for treating CH as CH pain is far too intense for aspirin to touch it, so this may be linked to something else.

With the sumatriptan, as others have said, the tablet form is fine for migraines, but for CH it takes too long to take effect with people using the injectable or nasal spray versions. It is meant to be used as an abortive, not really as a preventive.

The oxygen page people mentioned is Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Using a high flow rate (15lpm or higher) and a non-rebreather mask can result in quick CH aborts and you can use it as often as you want, so no more choosing which 2 CHs a day you can abort. I wonder if he is getting his patients to use a much lower flow rate and nasal canulas (or similar).

I wonder how much real experience that neuro has with CH based on his advice.

I'd second what people have said about D3, which has worked wonders for over 80% of people using it, with many going CH pain free for multiple years (including myself). Read about it at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

You can start the D3 anytime, so being mid-cycle isn't a problem. And I've been on it over 5 years.

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Lara.Purdue
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Re: New Member - in middle of cluster currently
Reply #7 - Jun 25th, 2017 at 9:16pm
 
Hey all - here's an update.

First - I agree about the oral sumatriptan.  I'm calling first thing tomorrow to be prescribed the nasal spray, whether it's covered by insurance or not.  The pills take 20-25 minutes to take effect and hopefully the nasal spray acts quicker.  I will say that when I have a CH and don't take sumatriptan, it will last one hour and often the shadow will linger for hours afterwards.  If I do take sumatriptan, after about 45 minutes, there's only a tingle sensation that remains and I'll usually get a few hours without pain.  Clearly it's working but I don't want to "over medicate" and have it lose its effectiveness.  For those of you that use sumatriptan (and no oxygen therapy) as an abortive, how often do you take the nasal spray when you're having 2-4 CHs a day? 

The oxygen is something I'm very interested in but I feel like I'm overwhelming my PCP right now (I was recovering from strep throat right when the clusters started).  Also it is not covered by my insurance.  I'm fortunate to be able and willing to pay for the equipment, but I want to give this sumatriptan nasal spray a try first. 

Lastly, I plan on speaking with my Dr. about the d3 regiment.  To have the lab work done beforehand as well as whether the two-week vitamin d3 loading schedule is something they recommend.  Having never taken supplements I'm optimistic that my body will respond quickly. 

I will continue to update as the week goes on!   I will admit that the last two days that the shadows seem to be occurring more often but , as stated earlier, the sumatriptan is the only means of aborting the actual attacks.  It's tough to tell whether these are 'rebound headaches' or my cluster is 'peaking' and I'm in for a rough few days.

Thanks again for all your input and insight.  It's refreshing to have such knowledgeable individuals when it comes to such an odd medical condition.  I realize that many of these treatments and medications vary per person but I'm hopeful that the d3 regiment will be able to lead to some pain free months/years. 

Lara

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Re: New Member - in middle of cluster currently
Reply #8 - Jun 25th, 2017 at 10:51pm
 
Hi Lara.....my "rescue med" of last resort is Zomig NS (5 mg) IF O2 and energy drinks don't work. Injected Imitrex made feel "ooky" and I knew the pills would not work quickly enough or for multiple hits during the day...which is the consensus you are hearing.

With the Zomig there are minimal side effects...5-10 min action and BEST part 12-18 hr effective life. One-a-day is all I ever need. Danged expensive...Used to pay $30 out of pocket per with good insurance...now still pay $15 OOP per with Medicare.....

Best

Jon
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« Last Edit: Jun 25th, 2017 at 10:51pm by jon019 »  

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Re: New Member - in middle of cluster currently
Reply #9 - Jun 27th, 2017 at 1:17am
 
Hey Lara,

The sooner you start the anti-inflammatory regimen with 10,000 IU/day vitamin D3, Omega-3 fish oil, and the vitamin D3 cofactors... the better...  You won't be sorry...

Regarding oxygen therapy coverage...  It is covered for cluster headache by nearly all medical insurance companies unless you're over 62 and a medicare beneficiary...  (Don't ask me why...  Suffice it to say it's a classic case of bull goose loony bureaucrats thinking they know more about treating cluster headache than neurologists and headache pain specialists with years of experience treating our horribly painful and debilitating disorder..) What is your insurance company?

If push comes to shove, take up oxy-acetylene welding.  A 3995 liter, E-size cylinder of welders O2 costs ~ $35 per refill after you pay for the cylinder... another $200...  If used properly, it can last several months using it three times a day to abort your CH...  in seven minutes or less...

Take care and please keep us posted.

V/R, Batch
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Re: New Member - in middle of cluster currently
Reply #10 - Jun 29th, 2017 at 12:01am
 
+1 on the D3 regimen, 5 years on it myself.

I have used Imigran (Sumatriptan) in a Fast Dispersion Tablet (Imigran FDT) at 50mg dose and found it to be effective around the 45 minute mark. I have a "partial response" says my specialist.
50mg may be enough for a CH abort and may cut back on the rebound or overuse headaches. That could also buy more aborts per day. Or if the 100mg tablets are scored, they could be halved with a pill cutter.

Injections have a faster abort time and are almost always successful, but expensive and have a bad side effect profile when used a lot. Sumatriptan was a nasty roundabout for me.

After 37 years chronic, I've just celebrated 365 days with no Imigran FDT, courtesy the D3 regimen.
I hope the beast does not overhear this and come after me!
Hopefully I'm not the only one who gets a bit superstitious about PF periods and the return of CH.
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Re: New Member - in middle of cluster currently
Reply #11 - Jun 29th, 2017 at 10:02am
 
Hey Lara, Just coming out of my third episode.. I wasn't aware of the D3 benefit with regard to CH but I actually take it as a suppliment most winters due to lack of sunlight in west of ireland over winter... perhaps it has been helping keep such a long distance between my episodes.

I'd recommend sumitriptan too.. it works in 15-20 mins for me..regardless of nasal spray or 100mg tablets. #lifesaver

I was in the same dilemma as you at the weekend where i was getting 4 or 5 a day but could only use the meds twice !!!  Cheesy

Try necking a can of redbull or getting out and about as often as possible. I was spending 2-3 hours in the gym / pool / steamroom etc over the weekend ... long walks etc... anything for distraction and to try and minimise the attacks.

Downing an espresso helps too on first sign... but beware the risk of caffeine headaches if you have too much.

Good luck, I hope soon it will be over.. i nearly lost my mind at the weekend but it was at it's peak...

oh and drink as much water as you can possible consume.

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Lara.Purdue
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Re: New Member - in middle of cluster currently
Reply #12 - Jul 2nd, 2017 at 7:15pm
 
Hey everyone,

I appreciate all the input and here's the plan:

I'm on vacation currently, when I return, I'll be seeing my Dr. to get a blood test and start my d3 regiment.  Does anyone know if it's less effective to take chewable Omega-3 fish oil? I have all my vitamins but would like to talk to my PCP before I begin this regiment.  I know she'll be on board but I prefer checking in first.

I've also decided that if the attacks increase in frequency after another week, I'll call my insurance (Blue Cross Blue Shield) to see what my options for o2 are under my current plan.  With the exception of my first two clusters, these attacks only last
2-3 weeks, 3 1/2 weeks at the longest.  I'm currently 2 weeks in.  And in the future, if there is another cluster.. (one can always dream), I'll go for the o2 and prednisone off the bat.

The unfortunate update: although the attacks are down to 1-2 a day, I'm pretty sure I'm having medication-overuse headaches.  I'll leave a message with my Dr. after the holiday (July 4th is American independence day for all my foreign friends).  I've taken roughly 24 100mg sumatriptan tablets over 14 days.  It sounds like a heavy dose (even though it's less than 2 a day), but the attacks are cut short by half the time if I take a tablet.    Sidenote, the nasal spray was not very effective for me.  My untrained hypothesis is that because I began with 100mg pills, the 20mg nasal spray was too small a dose to give me quick relief. 

Now - I experience shadow like symptoms and am very woozy for the majority of the day.  I won't go cold turkey off the sumatriptan because I have a flight in two days and am susceptible to having headaches after an hour or so in-flight.  Also - the ch that woke me up last night at 3am was a legitimate beast.  This cluster started off strong and eased off with meds, but last night's felt like a cluster I had on day 2.  It was debilitating.    That being said - the tough part is, the 100mg tablet provides ABSOLUTE pain free relief after 30-35minutes like clockwork.  When the headache wakes you up, you're already in ABSURD pain and the only solace I have is thinking.. if I take the ONE pill and wait 25-30mins, I'll live. 

I'm hopeful that if I keep it to one 100mg sumatriptan pill a day (reserve it for the evening cause the ones that wake me up from my sleep are terrifying).  Since, at one point, I was taken 2 pills and a nasal spray a day to avoid the clusters.  The 3 week mark is this Friday and I usually have less clusters toward the end of a cycle, that vary in 'severity'.  I know this varies by person.

I'm interested in seeing what my Dr. says about the MOH (medication overuse headaches) that I'm having daily.  Honestly though.. I'll take a light headache and a woozy feeling for 12 hours over the level of horridness the headache at 3am last night was , to give you an idea of the pain. 

Does caffeine help with MOH?? If that's even what I have.  Maybe I'm having a mild cluster that just lasts most of the day. Hard to tell!

Lara
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Re: New Member - in middle of cluster currently
Reply #13 - Jul 3rd, 2017 at 1:50pm
 
Hi Lara,

I just wanted to chime in on the O2 and insurance coverage. 

O2 was covered by my BCBS and I used an "in network" durable medical equipment (DME) provider.  Insurance covered a portion of the rental and the OOP expense is not that bad (around $15/month).  I did have my neurologist make my Rx very specific by stating that I needed a "high flow regulator at 15 lpm with a non-rebreather mask -- use as needed for CH".  The only issue I ran into in the beginning was that BCBS wanted a LETTER from the Dr. EACH MONTH verifying that O2 was still "needed" for my CH (Good Grief!  Roll Eyes Like CH was just going to magically disappear and I'd never have another one again...Really, Insurance Companies...Really?).  We remedied that by my Dr's office writing an Rx for each individual month.  I just take those by my DME provider and they keep them on file. 

I can't speak to your MOH headache, but if you're worried about medication overuse, give the O2 a try.  What can it hurt?  No Woozies on O2, at least.  I personally am not one to take a whole lot of Rx meds so I'm very comfortable using O2.  I am on verapamil at 120 mgs 3x/day and it has helped reduce the frequency.  I don't know if that would be an option for you.  Something you should discuss with your Dr.

Also, let me recommend the D3 as well.  It has done me a world of good.  I'm chronic and along with the verapamil, it has cut my CH to about 1-2 per month, and they are on the mild side.  I can hardly wait to go back to my Neuro next week and share the good news.  It took about 1 week for the D3 to really get in my system and start kicking some CH butt!

I hope you are PF and doing well.  Enjoy your 4th of July! 

Payg
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Re: New Member - in middle of cluster currently
Reply #14 - Jul 3rd, 2017 at 3:05pm
 
Hey Pay....what a GREAT post!

O2...the right way...yee haw...LIFE changing

A neuro who sounds like he or she GETS it...and willing to "play the game"...this is critical..

EXCELLENT insurance co game playing also...at one time I had BCBS....and 6 others at various times...it was always a fight.....they want you to give up....I refused...it got fun after a while...
but ya gotta play the game....

Verapamil works well for many...360/dy sounds low....480 being the usual "sweet spot"...but
less is mo betta....

D3...absolutely.....high level of success... which seems to get better as batch refines it...

Best

Jon
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Reply #15 - Jul 3rd, 2017 at 7:21pm
 
Thanks for your kind words, Jon! 

Yes, it is a game with the ins companies these days and has been heading that way for quite a few years.  The more specific and "intelligent" your doctor sounds, the more the ins co seems to approve.  Let me repeat my eye roll and say once again...Good Grief!  How I miss the good ol' days when the ins co. didn't question, meddle in or dictate your business.

As I mentioned to Lara, I'm not too keen on taking a lot of Rx's.  As they say, sometimes the cure is worse than the disease so I'm a bit cautious about taking meds.   My Dr. started me out on 240 mgs/day of verapamil and she moved it up to 360 mgs/day.  It has lowered my BP to normal (115/75) and it's probably the right amount for my height and weight.  As long as it keeps working, it's all good!

What I appreciate about O2 and the D3 -- two natural substances-- is there is very little to no chance of having negative side effects.  That's why I'm so excited to discuss this with my Neuro.  Maybe if she gets on board, she can convince other doctors in her field to try the same thing.   Education is definitely the key here!  I'm even going to suggest that she snoop around CH.com and read up (if she hasn't already)!   

I hope you have a great & PF week, Jon. 

Payg 
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Re: New Member - in middle of cluster currently
Reply #16 - Jul 4th, 2017 at 7:47pm
 
Hey Lara,

Please let me second the "Good On You" to Payg.  She's spot on with all her comments on oxygen therapy and the anti-inflammatory regimen with 10,000 IU/day vitamin D3 + Omega-3 fish oil and the conutrients. 

I've been providing information on high flow rate (15 to 40 liters/minute) oxygen therapy as a safe and effective CH abortive with no side effects since 2007 and the anti-inflammatory regimen with 10,000 IU/day vitamin D3 since I developed it in late 2010...  I estimate over 600 CHers have started the this regimen to prevent their CH since December of 2010.  83% of CHers taking this regimen have experienced a favorable response in the first 30 days and 54% experienced a complete cessation of CH symptoms...

Vitamin D3 does have side effects... That said... none of them adverse... they're all very healthy and wonderful side effects...

Please see Henry Lahore's VitaminDWiki.com link on 80 medical conditions either prevented or successfully treated with vitamin D3 + the conutrients...

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

If your PCP or neurologist says vitamin D3 is toxic at a dose of ≥ 10,000 IU/day or if your 25(OH)D serum concentration is 80 to 100 ng/mL... or higher... Ask for a copy of the study that says so...   They don't exist... 

Most of us would need to overdose on vitamin D3 at > 50,000 for more than 4 to 5 months to even come close to hypercalcemia... too much calcium in the blood...  Even then, all we would need to do is stop taking the vitamin D3 for two months (that's the half-life of serum 25(OH)D) then resume taking the vitamin D3 at a lower dose. 

There are multiple sclerosis patients in Brazil taking the Coimbra protocol that calls for a dose of vitamin D3 up to 1000 IU/Kg body weight/day plus the same cofactors we take with the anti-inflammatory regimen...  For a sleek rascal like me weighing in at 95 Kg, I'd be taking 95,000 IU of vitamin D3 a day. 

It's interesting to note that none of Dr. Coimbra's MS patients suffer from hypercalcemia... What is amazing is 95% of his MS patients are in complete remission from MS and are living very normal lives... The only thing they need to do is abstain from taking calcium supplements or eating calcium rich foods i.e., dairy products... See the following link for more details...

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

Dr. Coimbra also explains this vitamin D3 protocol is also effective in treating autoimmune disorders...

Knowledge is Power...  Know the subject matter cold... In this case, everything you can find about vitamin D3 so that makes vitaminDWiki the place to go. Then if your PCP or neurologist pitches a hissy over you taking 10,000 IU/day vitamin D3 to prevent your CH... you have the facts...

If you run into continued resistance, just remind your PCP or neurologist... there hasn't been a single death attributed to vitamin D3 in the history of the FDA's Adverse Events Reporting System (FAERS)...  They cannot say that about verapamil or any of the other prevents, anti-epileptics and anti-psychotics frequently prescribed for CH...

Finally, take along a copy of the suggested anti-inflammatory regimen treatment protocol titled: CH Preventative Treatment Protocol for Neurologists at the following link on the VitaminDWiki website.  That way you'll all be singing from the same sheet music if either agree with this regimen.  I just checked, this treatment protocol has been downloaded 2077 times.

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Take care and please keep us posted.

V/R, Batch
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« Last Edit: Jul 5th, 2017 at 2:17am by Batch »  

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