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New Member Introduction (Read 388 times)
jjgarcia
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New Member Introduction
May 26th, 2019 at 3:23pm
 
Hello everyone! I recently learned of this website and I'm already grateful for it. I’ve suffered from cluster headaches for 22+ years (since 18 years old) and only within the past few years was I told what they were. They seemed to have started after I was in a severe accident where the car rolled and my head smashed against the passenger side window (the side all CH are). I’m at the beginning of a new cycle and my last one was about 4 years ago... thank God. I believe frequent massages and exercise played a part. I’m not a big medication user so I usually just ride them out... very painful. My doctor prescribed me Imitrex, which I’ll pick up today. My headaches seem to be more frequent during this cycle. Yesterday I had 3 in one day but they don’t seem to last as long. I’m very analytical and keep trying to find a pattern or triggers and I’m getting nowhere. Anyone else notice a pattern, what makes them worse, more frequent, etc? Are they muscle or nerve related? I look forward to learning from each of you and adding support where I can. Thank you! - Jesse
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jon019
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Re: New Member Introduction
Reply #1 - May 26th, 2019 at 8:07pm
 
Hi jj...welcome....start here and everything else except Vitamin D3 regimen might be moot..

OXYGEN

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Peter510
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Re: New Member Introduction
Reply #2 - May 27th, 2019 at 4:18am
 
Hi JJ,

Jon mentioned Vitamin D3.

Read and come back with questions....

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Best,

Peter.
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AussieBrian
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Re: New Member Introduction
Reply #3 - May 27th, 2019 at 4:42am
 
jjgarcia wrote on May 26th, 2019 at 3:23pm:
...My doctor prescribed me Imitrex, which I’ll pick up today.

G'day JJ,  and welcome.  Imitrex comes in a number of forms.

The pills are generally thought to be too slow-acting to be much help when the monster rears its ugly head while the nasal spray works much, much more quickly.

The injectable variety is seriously preferred by most people and we've many tips on how to get best effect for the least money and worry.

Only better days ahead,

Brian down under.

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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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jjgarcia
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Re: New Member Introduction
Reply #4 - May 28th, 2019 at 12:44am
 
Thank you! I received the Imitrex injection but luckily I haven't needed it yet. I've been drinking a lot of water and dramatically reduced sugar and alcohol intake.
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jon019
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Re: New Member Introduction
Reply #5 - May 28th, 2019 at 1:31am
 
...Oxygen and D3.... and ya might not need the Imi…….ever

...my triptan of choice was Zomig NS...nunna the side effects of Imi...keep that in the back of yur mind.....

….BTW...some have reported head trauma as an instigator of CH...nothing you can do about that...speaking of back of the mind...prevailing theory of causation for most is a wonky hypothalamus....nothing ya do about that (yet) either ....that's why there be ch.com....

….alcohol is a trigger for most clusterheads (lesser so with chronics) so if yur looking for triggers it would be #1 in the book...………….

...tossing down an energy drink with at least 120 mg caffeine and 1000+ mg taurine (buy by price not brand) taken cold and fast at first sign of a hit...and preferably combined with O2.....and it's happy dance time.....
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« Last Edit: May 28th, 2019 at 1:35am by jon019 »  

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Mike NZ
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Re: New Member Introduction
Reply #6 - May 28th, 2019 at 3:45am
 
Hi and welcome

Some great advice above, especially about D3 which has worked wonders for many of us, with some (including myself) going multiple years CH pain free.

There is limited direct medical evidence between CH and head injuries, but there are multiple people who have posted here with a strong link between when CH started and a head injury (including myself). So don't let anyone who tells you it can't happen get to you.

Read up all you can here and ask any question you have. We're not medical doctors, but we are expert patients as we know CH all too well from person experience or supporting someone with it.
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MDR
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Re: New Member Introduction
Reply #7 - May 28th, 2019 at 7:23pm
 
alcohol BIG BIG Trigger

Mark.
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jjgarcia
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Re: New Member Introduction
Reply #8 - May 29th, 2019 at 12:52pm
 
WOW! Such great advice... thank you all. I wish I found CH.com earlier. Last night was a bad one. It was the worst headache during this cycle. Hit me at 10:45pm and lasted until  approximately 2am. I have my injectable Imitrex but it said take at the first sign and I thought it would pass, but didn't. I ended up taking it about 2 hours later when I couldn't take the pain anymore. It took about 45+ mins to kick in. That was my first time taking the injection.

I woke up with my head and right eye still hurting, but manageable, drank some coffee and popped a few Excedrin.  I didn't have any alcohol yesterday but maybe too much sugar...?

Today I'll drink a lot of water, no sugar or alcohol and my wife (who feels absolutely helpless as she stayed up with my last night) ordered my D3.

I've always believed that my headaches originated from my car accident but no way to prove it. Does anyone think they could be triggered by a muscle strain or injury in the neck or shoulder? I seem to find a pattern there as well, whether working out, playing sports or sleeping wrong. Trying to make sense of it all and seeing what I should avoid.

Thanks everyone!
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jon019
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Re: New Member Introduction
Reply #9 - May 29th, 2019 at 2:54pm
 
jjgarcia wrote on May 29th, 2019 at 12:52pm:
I've always believed that my headaches originated from my car accident but no way to prove it. Does anyone think they could be triggered by a muscle strain or injury in the neck or shoulder? I seem to find a pattern there as well, whether working out, playing sports or sleeping wrong. Trying to make sense of it all and seeing what I should avoid.


….many clusterheads experience what we call a "cluster lump" in the neck area....so you might be seeing a symptom rather than a cause....others here might comment on that as I have never had. (AussieBrian?). Others have reported neck issues from the physical manifestation of cluster hits like twisting, banging, thrashing, hitting your own head, yadda yadda yadda....and always possible to have multiple headache types, like tension headaches to spice up your CH life....a hot and/or cold shower, ice pack (frozen peas work good too), heating pad, etc would be worth a try for BOTH types....

…..careful with the Excedrin...many find helpful for shadows (small hits) but it will tear up your stomach and is useless for regular hits....probably the caffeine content that is helping anyway...

...do you have a headache specialist doc...it could be critical as many PCP's have limited, IF ANY, knowledge of CH...and throwing Imitrex at it is right out of a book when OXYGEN is the first line abortive (in medical lit and everything!) that should be tried first or at least in conjunction BEFORE "here's your Imitrex script...good luck....see ya".....

...OXYGEN saved my sanity, perhaps my life...and I aint alone by THOUSANDS.....relatively cheap, NO SIDE EFFECTS, easy to use, can be portable, fast acting...have you or your doc considered!?

….many find the D3 regimen (The WHOLE thing) to be near or totally effective...but I bet most keep an O2 tank standing by JUST IN CASE...it's fun to write your name in the dust on a revered buddy...
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The LARGE print giveth....and the small print taketh away.    Tom Waits
 
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jjgarcia
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Re: New Member Introduction
Reply #10 - May 29th, 2019 at 4:27pm
 
Awesome advice! Thanks. My doc did bring up O2 but said it could be expensive and that I should go to the emergency room first to see if it works before ordering.
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jjgarcia
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Re: New Member Introduction
Reply #11 - May 29th, 2019 at 5:37pm
 
Is there a particular brand of D3 or "dosage" that is recommended?
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jon019
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Re: New Member Introduction
Reply #12 - May 29th, 2019 at 5:38pm
 
jjgarcia wrote on May 29th, 2019 at 4:27pm:
Awesome advice! Thanks. My doc did bring up O2 but said it could be expensive and that I should go to the emergency room first to see if it works before ordering.


ummm….well, I wanna say something nasty about your doc.....but I won't...

...if you have insurance your O2 cost will be negligible...if you don't, then self pay either at the O2 shop or welding O2 is reasonable...

...ONE Imitrex script costs more than about 3 months of O2...

...the last time I was in the ER cost $10,000....no hospital stay

...many fire stations will treat you with O2 for free....might help to visit first and give them a heads up that you have CH and O2 is the first line abortive (mentioning  that it will save them an emergency run could only help)...
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The LARGE print giveth....and the small print taketh away.    Tom Waits
 
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jon019
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Re: New Member Introduction
Reply #13 - May 29th, 2019 at 5:41pm
 
jjgarcia wrote on May 29th, 2019 at 5:37pm:
Is there a particular brand of D3 or "dosage" that is recommended?


...see Peter's post above with link..
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« Last Edit: May 29th, 2019 at 5:44pm by jon019 »  

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AussieBrian
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Re: New Member Introduction
Reply #14 - May 29th, 2019 at 11:47pm
 
jon019 wrote on May 29th, 2019 at 2:54pm:
….many clusterheads experience what we call a "cluster lump" in the neck area....so you might be seeing a symptom rather than a cause.

Ahh,  the old cluster-bump.  For years I thought it the cause of this nightmare and tried no end of things to get rid of it.  Massage was the obvious which was very nice,  I admit,  and completely useless.  Hot and cold compresses certainly made me feel I was doing something constructive but that's about all I can say for that line of attack.

A specialist neurologist offered me a course of seriously expensive injections into the bulge and they're without doubt the weirdest thing I've tried.  It felt like crystallised urine being pushed out of a horse-needle and was just as effective.  Made my wallet hurt more than my head.

I've seen a number of proper scientific pictures that show the thing is real and it appears to be an inflammation of a ganglion of nerves in the back of the neck and these are in many ways associated with CH  -  so it's not entirely our imagination.

Equally,  a good friend of ch.com got excellent results with his TENS machine by putting one of the electrodes exactly on the cluster-bump.

So is this lump the cause or the result?  I'm still not sure,  but even the tiniest hint of a twinge in just that spot still sends chills down my spine.

Hope this helps,  JJ,  but in the meantime keep considering everything else as well.  Keep working on the O2 because it's truly worth the effort and our friend Batch will send you everything you need to know about the D3 regimen which is showing excellent results.

Only better days ahead,

Brian down under.

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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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jjgarcia
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Re: New Member Introduction
Reply #15 - May 30th, 2019 at 4:43pm
 
jon019 wrote on May 29th, 2019 at 5:41pm:
jjgarcia wrote on May 29th, 2019 at 5:37pm:
Is there a particular brand of D3 or "dosage" that is recommended?


...see Peter's post above with link..


Thank you! Link is not working.
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jjgarcia
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Re: New Member Introduction
Reply #16 - May 30th, 2019 at 4:45pm
 
jon019 wrote on May 29th, 2019 at 5:38pm:
jjgarcia wrote on May 29th, 2019 at 4:27pm:
Awesome advice! Thanks. My doc did bring up O2 but said it could be expensive and that I should go to the emergency room first to see if it works before ordering.


Awesome! Thank you. I'm working on O2 as we speak. The doc said my insurance doesn't cover it so I need to seek out a private vendor. Any recommendations?

ummm….well, I wanna say something nasty about your doc.....but I won't...

...if you have insurance your O2 cost will be negligible...if you don't, then self pay either at the O2 shop or welding O2 is reasonable...

...ONE Imitrex script costs more than about 3 months of O2...

...the last time I was in the ER cost $10,000....no hospital stay

...many fire stations will treat you with O2 for free....might help to visit first and give them a heads up that you have CH and O2 is the first line abortive (mentioning  that it will save them an emergency run could only help)...

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jjgarcia
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Re: New Member Introduction
Reply #17 - May 30th, 2019 at 4:46pm
 
I just saw the recommendations. Getting used to this UI.
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jjgarcia
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Re: New Member Introduction
Reply #18 - May 30th, 2019 at 4:49pm
 
Thank you!!! This makes total sense and I have a tens unit so I'll try it. I'll stay away from the crystallized urine for now haha

AussieBrian wrote on May 29th, 2019 at 11:47pm:
jon019 wrote on May 29th, 2019 at 2:54pm:
….many clusterheads experience what we call a "cluster lump" in the neck area....so you might be seeing a symptom rather than a cause.

Ahh,  the old cluster-bump.  For years I thought it the cause of this nightmare and tried no end of things to get rid of it.  Massage was the obvious which was very nice,  I admit,  and completely useless.  Hot and cold compresses certainly made me feel I was doing something constructive but that's about all I can say for that line of attack.

A specialist neurologist offered me a course of seriously expensive injections into the bulge and they're without doubt the weirdest thing I've tried.  It felt like crystallised urine being pushed out of a horse-needle and was just as effective.  Made my wallet hurt more than my head.

I've seen a number of proper scientific pictures that show the thing is real and it appears to be an inflammation of a ganglion of nerves in the back of the neck and these are in many ways associated with CH  -  so it's not entirely our imagination.

Equally,  a good friend of ch.com got excellent results with his TENS machine by putting one of the electrodes exactly on the cluster-bump.

So is this lump the cause or the result?  I'm still not sure,  but even the tiniest hint of a twinge in just that spot still sends chills down my spine.

Hope this helps,  JJ,  but in the meantime keep considering everything else as well.  Keep working on the O2 because it's truly worth the effort and our friend Batch will send you everything you need to know about the D3 regimen which is showing excellent results.

Only better days ahead,

Brian down under.


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Batch
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Re: New Member Introduction
Reply #19 - May 31st, 2019 at 11:27am
 
Hey JJ,

Regarding the go-to brand of vitamin D3, many of us have switched from the oil-based liquid softgel vitamin D3 formulation to the Bio-Tech D3-50.  This is a micellized water soluble form of vitamin D3 in a 50,000 IU capsule.  Order it over the Internet from amazon.com or iherb.com whichever has the best price.  This is also the least expensive form of vitamin D3 we can buy at an average cost of ~ 5 cents/day for a maintenance dose as opposed to 12 cents/day for two of the 5,000 IU vitamin D3 liquid softgels. 
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I'm working on an update to the posted download for the anti-inflammatory regimen at the following link that will reflect this suggested change in vitamin D3 along with other updates based on feedback from CHers taking this regimen.

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You'll also need the vitamin D3 cofactors and conutrients at the doses illustrated in the following photo.  You can order them by brand from amazon.com or if you shop at Costco, you can pick up all but the LEF Super K with Advanced K2 complex.
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These vitamins and minerals are essential for the body to metabolize vitamin D3 effectively and for vitamin D3 to prevent your CH through genetic expression.  They include 400 to 800 mg/day magnesium, 10 to 50 mg/day zinc, 1 to 3 mg/day boron, vitamin A (retinol) at RDA and vitamin K2 complex.

The Kirkland brand (Costco) Adult 50+ Mature Multi contains most of these vitamin D3 cofactors so I strongly suggest this brand.  It doesn't have enough magnesium or any vitamin K2 complex, hence the requirement for the extra magnesium and the Super K with Advanced K2 Complex.

We also need 1200 to 2400 mg/day of Omega-3 fish oil.  The Omega-3 fatty acids are conutrients as they serve as additional anti-inflammatory agents

The first step is to see your PCP/GP for a lab test of your serum 25(OH)D.  This is the first metabolite of vitamin D3 that's used to measure its status.  The normal reference range for this lab test is 30 to 100 ng/mL.  However, most physicians unfamiliar with vitamin D3 therapy will interpret 31 ng/mL as normal and 99 ng/mL as dangerously high.  Nothing could be farther from the truth. Be sure to ask for a copy of the actual serum concentration when the labs come back. 

If you can swing it, have your PCP/GP order labs for your serum calcium and PTH (Parathyroid Hormone).  These labs will serve as a baseline for future labs to assess the effectiveness in elevating your serum 25(OH)D without elevating your serum calcium above its normal reference range

As CHers, we need to keep our 25(OH)D serum concentration around 80 ng/mL to experience a therapeutic response to vitamin D3.  Many CHers require higher doses of vitamin D3 from 15,000 IU/day to 25,000 IU/day and a 25(OH)D response around 100 ng/mL and even higher. 

25(OH)D is a very poor indicator of vitamin D3 intoxication/toxicity. The only real way of determining this condition is with the lab for serum calcium.  It should remain within its normal reference range even with serum 25(OH)D concentrations as high as 190 ng/mL or higher.  Accordingly, if your PCP/GP goes into fibrillation or gets his or her knickers in a wad if your 25(OH)D serum concentration comes back at or above 100 ng/mL, the lab for calcium will prove conclusively there's no hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity or in medical terminology, "hypervitaminosis."

It's best to have your PCP/GP or neurologist working from the same sheet music and as an active participant as you take this regimen.  Accordingly, give him or her a copy of the download above when you ask for these lab tests.

It's best to start this regimen with the 12-Day accelerated vitamin D3 loading schedule taking 50,000 IU/day for 12 days.  That said, if your lab for 25(OH)D comes back with a serum concentration in the teens, then a 14-Day loading schedule would be indicated. While loading vitamin D3 you'll need additional magnesium so take 800 mg/day split 400 mg am and 400 mg in the pm with meals in order to avoid osmotic diarrhea.

Rationale for the 12-Day vitamin D3 loading schedule.  The average adult 25(OH)D response to a dose of 100,000 IU/day of vitamin D3 is an increase of 10 ng/mL.  In order to elevate a serum 25(OH)D concentration from 23 ng/mL to 80 ng/mL will require a total loading dose of ~ 600,000 IU of vitamin D3 spread over 12 days or 50,000 IU/day for 12 days. 

This is the fastest way to elevate serum 25(OH)D and to experience a therapeutic response with either a significant reduction in CH frequency, intensity and duration or a complete cessation of CH.  The following notional graphic illustrates this time saving benefit.
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As you can see, it could take upwards of 3 months to elevate serum 25(OH)D at an intake of 10,000 IU/day vitamin D3 where the 12-Day accelerated loading schedule does it in 12 days.  When the CH beast is jumping ugly several times a day, 12 days or less to a pain free response is mo betta than waiting 2 to 3 months. Don't ya think?

When the 12-Day loading schedule is complete, take one (1) of the Bio-Tech D3-50 50,000 IU vitamin D3 capsules every 5 days (120 hours) for an average daily dose of 10,000 IU/day.  This will be your initial maintenance dose.  I say "initial" as some CHers will need higher vitamin D3 maintenance doses and higher responding 25(OH)D serum concentrations to remain CH pain free.

30 days after start of regimen, see your PCP/GP for lab tests of your serum 25(OH)D, calcium and PTH (parathyroid hormone).  These labs are important as they give us the best picture of vitamin D3 status and calcium homeostasis.  As long as you're CH pain free at this point and your calcium serum concentration is within its normal reference range, the actual 25(OH)D serum concentration doesn't really matter even if its over 100 ng/mL.

The above should give you enough to get started on this regimen.  If you have any questions or problems, please let us know.  Most CHers taking this regimen experience a favorable response or go CH pain free in the first week to 10 days as illustrated in the following graphic from the online survey of CHers who have taken this regimen.
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One final note.  The anti-inflammatory regimen is not a "cure" for CH so it must be taken daily year-round to enjoy its benefits.  That goes for episodic CHers as well. Staying on this regimen year-round makes the next CH cycle a non-event as most ECHers sail through their next and succeeding cycles CH pain free while taking this regimen.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: May 31st, 2019 at 12:05pm 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
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