New guy

[Ammo]

Hi guys,

This is my first time ever writing on a blog, so bear with me.

I have had episodic Cluster headaches for about 15 years  usually starting around March/April and lasts for about 8 weeks.

My neuro usually gives me a injection of methylprednisolone in the back of my head with 70% success in stopping the attacks for that season, the other 30%  of the time I take prednisolone tablets starting at 75mg for 2 weeks then weening off. 

This year I have had 2 injection and have been on the tablets up to 100mg and have been having headaches every day/night with a break (headache free) of 3 days every other week. 

I have presented to the ED twice for oxygen, the first time in an ambulance and was left in waiting room until attack was over. 

I have recently been introduced to a fellow cluster head who has been pain free for 18 months after taking a vitamin regime. I have started this also now for about 2 weeks but the attacks have not changed.

He also had lent me his oxygen which has helped a lot with the intensity and duration of the attacks (Thanks Mark) 

I am trying to get to see another neuro who may have some more experience with CH as mine doesn't seem to be very interested and tells me I may grow out of it.

I hope that soon I will be pain free but I until then any advice would be helpful.

Thanks 

Mike

[CHfather]

As we often say, Mike, Welcome, and sorry you have to be here.

Is the vitamin regimen the one that includes vitamin D3, Omega-3, calcium, and other supplements?  That has worked well for many people, but it's generally not instantly effective, because you need to get your vitamin D levels up.  Here's a link to more info: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708   If this is the vitamin method you're using, be sure you're doing all the ingredients and consider the "loading" approach to get your D level up faster.

Great that you had a friend who could hook you up with O2!  Many people find that some caffeine at the start of the oxygen helps get rid of the attack. For some people, some strong coffee is enough; most find that an "energy shot" such as 5-Hour Energy or an energy drink such as Red Bull works better.  Are you getting full aborts with your O2 within 10-12 minutes?

If you get to see a sane neurologist (not one who's relying on prednisone and telling you that you might grow out of CH), you will want a prescription for O2.  The other prescription meds that are typically prescribed are verapamil as a preventive and sumatriptan as an abortive.  Verapamil doesn't kick in fast (usually prednisone is used as a "bridge" for some pain-free time while the verap takes hold).  Sumatriptan in injectable or nasal-spray forms (not pills -- they are pretty much useless) can be used to stop an attack when the O2 isn't working.  We can talk more about those things if you get prescriptions.

Read through the files in the ClusterBuster Files section that seem relevant to you.  The numbered files address the topic of "busting," which many people have found to be the best strategy for them. 

 

[Ammo]

Thanks mate, yes this is the one. I am loading and taking all the vitamins listed.

i have tried the energy drinks in the past as well as strong coffee but  without the o2 and don't think they made any difference, in the last few days just the o2 seems to abort the attacks within 10-15 min. 

The sumatriptans I have used in the past are the nasal spray (20mg) doesn't seem to help, Fast dissolving tablet (50mg) taking 2 at the start of attack seems to help a lot. My attacks went from 1.5-3hrs to 30 min with this alone. I have also had some 100mg tablets and one seemed to do the same result.

one question that I would like to ask anyones opinion on is, do you think that a tooth cavity on the side that the pain is could be a trigger, I am considering having a tooth removed thinking that this may be the reason this years treatments aren't working. 

I have had a tooth removed as a mis diagnosis a few yrears before being diagnosed with CH and the pain instantly went for that season once the tooth was removed. 

With the neuro I am waiting to see another one and hopefully get a more professional level of care. 

Thanks for you time

Mike

[CHfather]

You probably know that lots and lots of people with CH have had teeth-related stuff done without having any positive effect on their CH.  If you do have necessary dental work done, keep in mind that some dental anesthetics are triggers. Anesthetics containing epinephrine (such as Xylocaine) have been identified by some people as triggers. Nitrous oxide ("laughing gas)" has been identified by some people as a trigger (other people say it isn't a trigger for them; and some even think it's an effective abortive).  Prilocaine seems not to cause bad effects. 

Maybe consider trying an energy shot with the O2. Some people have said they work better in that combo than alone.

[Ammo]

Thank you for the info I didn't know about the dental stuff I will carefully consider what to do if any work is needed.

i will try to get some energy shots and give it a go 

thanks again for the info

Mike

[xxx]

Hey Ammo,

Stick with the vitamin D3 regimen and if you haven't already done so, shift the loading schedule over to 50,000 IU/day for another 10 days.  This works a bit faster than the 2-Week loading schedule and a lot faster than the 4-Week loading schedule in elevating your 25(OH)D serum concentration to 80 ng/mL and a favorable or CH pain free response. 

Be sure to drink 2.5 liters of water a day.  Regarding the tooth, 6 to 10 grams (6,000 to 10,000 mg) per day of vitamin C is not too much for any oral infection/tooth cavity.  I keep a small bowl of vitamin C tablets on the kitchen counter.  I load it with 10 each night at bed time then down a 1000 mg tablet every hour of so throughout the day with a big gulp of water.  As an episodic CHer you're shooting for a 25(OH)D serum concentration of 80 ng/mL with an initial maintenance dose of 10,000 IU/day vitamin D3 once you've completed the accelerated loading schedule.

If the CH beast is still jumping ugly after 3 to 4 days on the accelerated vitamin D3 loading schedule, pick up a first-generation antihistamine like Benadryl (Diphenhydramine HCL) and take 25 mg every 4 hours throughout the day.  Just be careful and not drive ans this much Diphenhydrmaine will make you drowsy.  If you need to drive and be sharp as a tack during the day, wait until you're home for the day then take 50 mg of Diphenhydramine and another 50 mg at bed time...

Take care and please keep us posted.

V/R, Batch

 

[Ammo]

Hi Batch,

Thanks for the extra info I have started the extra d3 dose today will keep you guys posted.

cheers

 

[xxx]

Hey Ammo,

Good Onya...  If there's no joy after 3 to 4 days at the new vitamin D3 loading dose, see your local chemist/pharmacist for a first-generation antihistamine and take as directed for a week to 10 days.  A sub-clinical (no obvious or outward symptoms) allergic reaction will release histamine that can cause all kind of problems for CHers.

Take care,

V/R, Batch

[Ammo]

Hey guys just an update, been on Benadryl for 3 days and been pain free for 2 days still have moderate shadows but have avoided the o2. So far so good....

[Ammo]

Hi guys checking in again,

Was pain free for 4 days then 4am  wake up call followed by 3 attacks each for the next two days., then another 3 days pain free and yep, another attack. I'm searching for the triggers but cannot put my finger on it. Still on the Benadryl and the 50000 d3 loading, not sure what else to try.?

[MoxieGirl]

Hi Ammo,

I get asked a lot by people if I know what triggers my headaches, migraines and clusters, and I generally answer with, 'just one of the perks of being me.'

The pursuit of triggers is an important one, but only to a point. They can get you chasing your tail if you're not careful. Just about every time I have a migraine or cluster, my best friend will site the weather as the cause, or a recent stressful event, or some other reason she'll pull out of thin air. But you know, sometimes there is no trigger. It's just who I am, how my body works. 

I know the cause, and am aware of the key triggers. The reason I have migraines is that they are hereditary, everyone in my family has them. My nephew died from an overdose of pain killers, his were so bad. But, the reason I have daily chronic headaches, plus bad migraines, plus clusters is because I changed my hormone system from a Testosterone based one, to an Oestrogen based one, and it altered my Hypothalamus - and these headaches are the result of that process.

As a side note, has anyone mentioned getting your testosterone levels checked? A lot of CH'ers have lot T levels.

In regards to triggers, I think that no two cluster heads are the same, and just as soon as you figure yours out, they change.

For most, they can't touch alcohol. Doesn't affect me at all (which is good). If I have too much stress, I get a migraine. To little stress, or if it drops too quickly, then I get a cluster. To many late nights (i.e. more than 2 in a row) and I'm sure to get slammed by the beast. Get to hungry, get a migraine. Strong smells, loud sounds, bright lights, cold (like someone touching me with ice) - will all produce a migraine. 

There might be one or two things I left off the list, but that's about it. I'm so confident in my list of triggers, that I've stopped looking for more, and focus more on aborting and preventing the pain.

MG

[CHfather]

 

 

On ‎5‎/‎11‎/‎2018 at 8:10 AM, Ammo said:

Was pain free for 4 days then 4am  wake up call followed by 3 attacks each for the next two days., then another 3 days pain free and yep, another attack. I'm searching for the triggers but cannot put my finger on it. Still on the Benadryl and the 50000 d3 loading, not sure what else to try.?

Maybe take a look at this thread?  https://clusterbusters.org/forums/topic/5417-b1-oral-high-dose-thiamine/

D3 + Benadryl are the only preventives you're using?  You're not busting, right?

 

[xxx]

Hey Ammo,

Be sure to take all the cofactors... They're essential.  For example if you skip the magnesium, you'll have a CH pain free response as long as there's some magnesium left in your system.  Without 400 mg/day magnesium Vitamin D3 will deplete it from your system and the CH beast will start jumping real ugly...

Take care and please keep us posted.

V/R, Batch

[Ammo]

Hi guys ,

i am taking all the cofactors-

325mg magnesium,omega 3 fish oil 1000mg,zinc 30mg,vitaminA 5000IU, vitamin k2 200mcg,calcium 600mg,vitamin d3 50000IU, vitamin b-50. 

As for busting No, is this referring to psilocybin ect..

[CHfather]

Yes, busting refers to substances that include psilocybin and certain seeds.  You might look at the numbered files in the ClusterBuster Files section to see whether that interests you or not.

As far as I know, the Thiamine/B1 that I linked you to doesn't interfere with the D3 regimen.

[xxx]

Hey Ammo,

Excellent!   As you've just finished the loading schedule, your serum 25(OH)D is still climbing.  Stay at 10,000 or 15,000 IU/day vitamin D3 as your maintenance dose for at least two weeks to let your 25(OH)D stabilize then see your PCP for lab tests of your serum 25(OH)D, calcium and PTH (parathyroid hormone).  As long as you're CH pain free or mostly so, your serum calcium is within range and your PTH is in the lower half to third of its normal reference range, you're good to go at the present maintenance dose...  and your actual 25(OH)D doesn't really matter... even if it's over 100 ng/mL. 

The next step is diet...  For the next month no sugar or sugary products. I'd even stay away from diet pop and artificial sweeteners.  In short, if it's sweet... don't eat it.  No wheat or grain products including grain oils like canola, mazola or margarine blends.  Good oils include organic butter, olive oil, avocado oil, and my favorite extra virgin coconut oil.  No bread, cereal, pasta or pizza.  You can eat all the organic NON GMO green and yellow veggies you want.  You can also have one serving of fresh fruit/day but no fruit juice unless you buzz your own in a blender as a smoothie.  you can eat all the free range organic meats, poultry and eggs you want.  A serving of wild caught fish, oysters, muscles or crab is really good for you.  Avoid farmed fish and nearly all shrimp & prawns, they're farmed too.  You never know what they've been fed and for sure, they're given antibiotics and growth hormones we don't need.

Other vitamins and supplements to add are: 4 to 6 grams/day vitamin C, CoQ10, 1000 mg/day turmeric (curcumin) and a baking soda tonic first thing in the morning before breakfast.  You make it with a half teaspoon of good old Arm & Hammer Baking soda in 4 ounces of cold water.   I take all of the above...

Take care and please keep us posted.

V/R, Batch

Edited May 13, 2018 by Batch

[spiny]

Hey Batch, what does the turmeric do for you? I do not remember.

[xxx]

Hey Ammo,

Good question.  Turmeric (Curcumin) is a natural anti-inflammatory and anti-oxydent.  It adds additional pressure to down-regulate/suppress the expression of CGRP and that helps prevent CH.  When combined with CoQ10, vitamin C and the rest of the anti-inflammatory regimen, it does wonders for the cardiovascular system.

Take care and please keep us posted.

V/R, Batch

[tmac]

Hi Ammo, I wanted to share my experience. Maybe it'll help!

I have had two sinus surgeries and even had teeth pulled before I found that busting & D3 is legit. Last year, I was in the most horrible pain of my life with 3-4 attacks a day.  These were level 10 headaches.  I couldn't function and was ready to give up.  I took the plunge and busted with LSH and that stopped the everyday cycle. It was quite dramatic. I would have erratic attacks, but they were different and not day consuming.  I was terrified of trying it and it seemed wrong, but there's nothing like pain to get you to do things you would have never considered and I am glad I did as it stopped my 3 a day cycle.

The attacks, however, were still there.  Just less intensity and frequency.  This is when I legitimately looked into the vitamin regimen.  I experimented a lot and found that 15,000 IU of D3/day keeps me headache free.  I remember the first week without a headache.  I have had a headache every day of my life that I can remember.  So much that I averaged 2-4 ibuprofen a day for the last 20 years.  Not CH, but pain on a regular interval.  After the D3, it changed.  I remember telling my wife, this is the first time I can remember not having a headache.  It's crazy how much you get used to it.  Anyway, if I miss 2 days of the D3, I feel them coming back.

So, long story short.  Bust if you can!!  Then do the D3 regimen daily but don't make it complicated.  I experimented for 6 months and found the following to work for me:

- 15,000 IU D3 daily.  Must take during middle of lunch.  My guess is absorption.  If I take before or after a meal, I will feel it the next day.  For me, taking it in the middle works best.

- For me, the other vitamins didn't matter.  I slowly eliminated each and found that the D3 alone was the only needed component.

- The version of D3 you use is important.  I tried many varieties but found that the only one that works is the basic GNC brand D3.  

Anyway, that's my take.  Best of luck to you!

[CHfather]

16 hours ago, tmac said:

For me, the other vitamins didn't matter.  I slowly eliminated each and found that the D3 alone was the only needed component.

tmac, I'm hoping that Batch will respond to this . . . He's the one who knows why the other supplements are necessary, but I believe you can have substantial longer-term issues from not taking them. I think that hypercalcemia is one of those issues: https://www.mayoclinic.org/diseases-conditions/hypercalcemia/symptoms-causes/syc-20355523

[DBMAX]

Hi Everyone,

When is the best time of day to take the vitamin D regimen? I used to take the regimen at lunch time but I found it would make me tired and little confused for about 2 hours. Near bedtime would be ideal for me. But would that interfere with my sleep or the melatonin I take at night?

Thanks!

[xxx]

Hmmm... Lots of good questions so I'll start with the vitamin D3 cofactors...  In simple terms, more CHers respond to this regimen if they take all the cofactors than CHers who take only vitamin D3.  That some CHers experience a cessation of CH symptoms taking only vitamin D3 likely indicates they're likely eating a diet very rich in the needed vitamin D3 cofactors. 

To give you an idea of how much dietary sources of magnesium you would need to eat a day in order to satisfy the 400 mg/day requirement for magnesium, you would need to eat:  3/4 pound of dark chocolate or 13 ears of corn or 4 cups of broccoli or 8 cups of peas or 5 cups of Tofu or a cup and a half of Cashews or 13 bananas or 3 cups of black beans... (that could be dangerous) and the list goes on...  My SWAG (Sophisticated Wild-Ass Guess) is it will be a lot easier and cheaper to take a 400 mg capsule of magnesium for 11 cents a day than go through the gastrointestinal stress... and expense of eating enough dietary sources of magnesium each day...

What we've learned over the last 7 years about this regimen is Magnesium is a must as it is consumed rapidly in the enzymatic process that hydroxylates vitamin D3 to 35(OH)D and on to 1,25(OH)2D3 the genetically active metabolite. 

Without magnesium supplements, taking 10,000 IU/day or more vitamin D3 will deplete the body's magnesium reserves rapidly (a couple days) and this results in a magnesium - calcium imbalance.  As muscle contraction requires calcium and muscle relaxation requires magnesium, a magnesium deficiency will result in muscle cramps.  Finger and leg cramps are annoying at best... however when cardiac muscle starts cramping or not relaxing properly, THAT will get your attention with a fluttering feeling in your chest.  Solution... take at least 400 mg/day magnesium.  The other indication of insufficient magnesium is when CHers take only vitamin D3 they tend to have a favorable response or a pain free response within the first week...  They enjoy 2 to 3 days of CH pain free bliss then the CH beast starts jumping ugly again... Why?  Vitamin D3 has consumed available magnesium leaving none to support further vitamin D3 hydroxylation.

Regarding the rest of the vitamin D3 cofactors... My research and that of experts in vitamin D3 therapy indicate each of the remaining cofactors plays a role in both the D3 pharmacokinetics (What the body does to vitamin D3) and vitamin D3 pharmacodynamics (What vitamin D3 does to the body). 

As CHers, we need to take this regimen daily as a way of life.  Accordingly, I've tried to select the supplements with the best bang for the buck. 

10,000 IU/day Vitamin D3 (Nature's Bounty) - 12 cents

400 mg/day magnesium (Nature Made) - 11 cents

Kirkland 50+ Mature Multi - 4 cents (The Mature Multi contains nearly all the essential vitamin D3 cofactors.  It doesn't have enough magnesium and it doesn't have any vitamin K2),

Omega-3 Fish Oil (Nature Made) - 8 cents (The Omega-3 fatty acids act as a potent anti-inflammatory and also help in the absorption of vitamin D3). 

This brings the total cost per day for the anti-inflammatory regimen essential supplements to 36 cents.  Adding the LEF Super K with advanced K2 complex (MK4 % MK7) - 20 cents This brings the total cost of basic anti-inflammatory regimen to 55 cents/day.

When to take the anti-inflammatory regimen...  For starters, its best to take this regimen with the largest meal of the day.  There are two good reasons for doing this.  1. Absorption is highest when these supplements are taken with food high in fats.  2. Taking this regimen with food helps avoid GI tract distress.  As an example, taking magnesium on an empty stomach increases the odds of osmotic diarrhea.  It's also best to take all of these supplements at the same time each day. 

Rational... Vitamin D3 absorption starts when it reaches the small intestine and continues as it travels roughly 12 feet until it reaches the large bowel... roughly 12 hours after oral dose where it reaches maximum serum concentration (Cmax).  Vitamin D3 (not 25(OH)D3) has a half-life of roughly 18 hours as a fraction of vitamin D3 it is hydroxylated to 25(OH) vitamin D3 each time serum vitamin D3 passes through the liver.  What really counts for us as CHers is the hydroxylation of vitamin D3 at the cellular level in neurons and astrocytes within the trigeminal ganglia.  Here it's likely hydroxylated at the same rate... and possibly much faster.   As this is the site of the genetic expression that down-regulates the expression of CGRP that helps prevent our CH, and the reduction in CH frequency can be as short as 12 hours... hydroxylation to 1,25(OH)2D3 may be even shorter than 12 hours.

Getting back to vitamin D3 pharmacokinetics... 10,000 IU of vitamin D3 = 250 mcg = 0.25 mg...  That's not much when you consider nearly every cell in the body needs vitamin D3 and we're trying to get as much as possible into neurons and astrocytes within trigeminal ganglia where it's hydroxylated to 1,25(OH)2D3 to support the genetic expression of peptides that down-regulate the expression of CGRP and in doing so, helps prevent our CH... 

Hope this helps...

Take care, V/R, Batch

[DBMAX]

Thanks Batch for the information. I just posted my current predicament under "Busting a Cycle?" in Theory & Implementation.