Over 70

[islandguy]

I am 72 now and have CH since I was 21. Episodic. Went to headache specialist back in the 60's and was diagnosed. 

I have tried every drug there was. Some which worked and most didn't. The ones that worked had such bad side effects I would stop taking them. For the past 10 years I have been using Sumatriptan injections which work great but has been noted had some side effects. 

Are there anyone here that is over 70 and what have you been using to combat CH?

[CHfather]

Can't answer your specific question, but here are a few thoughts:

Are you splitting your injections?  https://clusterbusters.org/forums/topic/2446-extending-imitrex/

Doing the D3 regimen?  https://clusterbusters.org/forums/topic/1308-d3-regimen/

You mention drugs but not oxygen.  You have oxygen?  If you tried it many years ago and it didn't work for you and so you gave it up, it's been found that a higher-flow system with a better mask can work for most people.

[Pebblesthecorgi]

I found out this spring my Uncle (now 74) has had CH most of his life.  Now I understand his personality better.  He is a stubborn old coot and won't consider injections.  He has access to O2 which helps and he found by accident in the course of his profession.  To my surprise his main tactic is to have his wife hide the guns and drink.  When I pointed out how little sense this made with alcohol being a trigger and potentiater he basically dismissed me.  The same happened when I tried to discuss D3, MM, DALT, energy drinks etc.  After reflecting I suspicion he would rather endure attacks the way he has his whole life rather than find out there was a solution and he has suffered needlessly all these years.  On the other hand I benefitted from finally talking to someone who actually knew what I have been dealing with for a long time.  It actually inspired me to go to a CH conference.  The conference experience is surprisingly positive because you are surrounded by folks who "get it".

 

What sort of side effects are you having with injections?  CHfather has good advice for things to consider or revisit.

[islandguy]

I found out this spring my Uncle (now 74) has had CH most of his life.  Now I understand his personality better.  He is a stubborn old coot and won't consider injections.  He has access to O2 which helps and he found by accident in the course of his profession.  To my surprise his main tactic is to have his wife hide the guns and drink.  When I pointed out how little sense this made with alcohol being a trigger and potentiater he basically dismissed me.  The same happened when I tried to discuss D3, MM, DALT, energy drinks etc.  After reflecting I suspicion he would rather endure attacks the way he has his whole life rather than find out there was a solution and he has suffered needlessly all these years.  On the other hand I benefitted from finally talking to someone who actually knew what I have been dealing with for a long time.  It actually inspired me to go to a CH conference.  The conference experience is surprisingly positive because you are surrounded by folks who "get it".

 

What sort of side effects are you having with injections?  CHfather has good advice for things to consider or revisit.

Hi, I have used o2 with some success. Works about 30% of the time. About two years ago I was in Jamaica  for vacation when CH hit. I had my injections with me but used as little as possible. Tried energy shots. Didn't work. Tried meditation. No go. Had to leave early to get back so I could try O2. This episode O2 didn't work. Most of my life I would get them for exactly 30 days and then gone for about one year and then back. The last number of years I would get them for 60 days and sometimes on both sides of my head. Last year they tried to come on but left after about a week so this time coming I am expecting the worst. 

I have stocked up on sumatriptan but I don't like to use it unless it is a bad one and I haven't had much sleep in awhile. Most of my life I just gut it out. I usually only get one a day but in the last number of years it can be two or three a day. 

When I lived in NYC in the 70s I went to a conference and was surprised to find so many like me there. Back then not much was known. We were trying anything to fix the problem. I even tried a chiropractor for a number of months because he said this would fix anything. All I got out of that was a stiff neck and less money in my bank account. 

Now this magic mushroom is looking better. It was on the national news last night saying it helps cancer patients. I would like to try but don't no where to buy them since they are illegal. We just voted here in Maine to legalize pot which is good.

O well I will just keep trying.

[Pebblesthecorgi]

The best way to access MM is growing your own.  The process is straight forward but it can take a while to get product.  Getting things on the street presents trouble.  Many have used a college aged kid or grandchild to find a source.  When folks know what you want them for many try to help.  They are seriously illegal though so great care is needed finding a trusted source.

 

In the more socially accepted world high dose steroids for a brief time can help as does verapamil but the over 65 crowd has to be closely watched to be sure a heart rhythm problem doesn't occur; these are rare but must be checked for.

 

Using 5-MEO-DALT (lots of info on facebook cluster group) has recieved a lot of positive results particularly as a preventative.  It is borderline legal but you have to order from our Canadian friends.

 

What the news reports regarding the positive effects of MM parallels many reports from the CH membership.

[CHfather]

"Magic mushrooms" in treating CH has to be understood as a popularization of multiple possible approaches.  It seems that virtually any psychedelic substance will help treat CH.  As Pebbles' says, DALT seems effective for many people.  Many get good results from LSD.  People are reporting that very low doses of DMT work great for them.  And many get excellent results from rivea corymbosa (RC) seeds, which unlike psilo and acid are legal to purchase and possess. It's just not legal to process them (which means, in the simplest form, grinding them up and soaking them in water for an hour).  At therapeutic levels, RC is very unlikely to cause any kind of trip or any serious side effects at all. It's not the "tripping" that treats the CH.  So if you don't want to wait for shrooms to grow, or figure out how to order DALT, or find someone trustworthy with LSD or DMT to sell, RC might be something to consider as a next step.

 

Read the numbered files in the ClusterBuster Files section. Here's a link to the one about RC: https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/  Those files were composed a long time ago now, and we know more, so please check back with any questions, or before you do anything.  Many people order RC from here: https://shop.tranceplants.net/

 

I can't think of a reason why you wouldn't try the D3 regimen that I linked to in my earlier post, and I will say (again, more or less) that if your O2 works 30% of the time, I am very, very confident that it will work much better, much more often, with a high-flow regulator ($30), a mask designed for CH ($30), and being sure that you use the most effective breathing strategy for you.

[xxx]

Hey Islandguy and Pebblesthecorgi

 

I know what you two and Pebblescorgi's father are going through and the good news is it doesn't need to be that way... The odds are you’re vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your headaches.   The results of lab tests for serum 25(OH)D, the metabolite of vitamin D3 that’s used to measure its status, taken before start of treatment with the anti-inflammatory regimen by 187 cluster headache sufferers (CHers) with active bouts of cluster headache (CH) are illustrated in the following normal distribution chart.

 

 

As you can see, it’s a no-brainer.  If you have CH, you are very likely vitamin D3 deficient and for sure, with a 95% confidence interval, your serum 25(OH)D concentration is less than 47 ng/mL.  As a CHer, we need to have our serum 25(OH)D concentration up around 80 ng/mL in order to experience a lasting pain free or substantially pain free response.

 

Please understand what I'm suggesting isn't an either-or situation with busting.  I've worked with several CHers here who continued busting while taking the vitamin D3 regimen with good success in preventing their CH. I call this combination of vitamin D3 and the vitamin D3 cofactors the anti-inflammatory regimen as that's what it does... 

 

Instead of treating the symptoms of CH (the terrible pain), this regimen works up stream in the pathogenesis of CH to down-regulate/inhibit the production of Calcitonin Gene-Related Peptide (CGRP) and Substance P (SP).  It's these two neuroactive substances that are responsible for the neurogenic inflammation and pain of CH.  Vitamin D3 does this through the process of genetic expression where the genetically active vitamin D3 metabolite 1,25(OH)2D3, calcitriol, physically attaches to genes within neurons in the hypothalamus and trigeminal ganglia.  Genetic expression is where vitamin D3 unlocks the cell's library of genetic instructions and the cells start executing these instructions doing one of four things... they replicate, differentiate, up- or down-regulate the production of genetic products or they die, (apoptosis - programmed cell death... what we would hope happens to cancer cells).

My name is Pete Batcheller, a.k.a. "Batch" here at Clusterbusters and CH.com. I'm a retired Navy fighter pilot and long time chronic cluster headache sufferer (CCHer)…  except I no longer suffer from these terrible headaches.  I’m the guy who developed and started taking the anti-inflammatory regimen in October of 2010…  I’ve been pain free ever since.   You’ll see how and why as you read on.  So much for the mechanism of action...

Confirming a vitamin D3 deficiency is easy…  See your PCP or neurologist for the lab test of your serum 25(OH)D, total calcium and PTH (Parathyroid Hormone)  The total calcium and PTH will be used as a baseline for subsequent labs after your 25(OH)D has stabilized around 80 ng/mL.  25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status.

The normal reference range of 25(OH)D is 30 to 100 ng/mL (75 to 250 nmol/L).  However, most physicians will interpret 31 ng/mL as normal.  While that may be true and a high enough concentration to prevent rickets... it's far too low to prevent CH.  CHers need to have their 25(OH)D up in a range between 60 to 110 ng/mL (150 to 275 nmol/L).  The target 25(OH)D serum concentration is 80 ng/mL (200 nmol/L).

Over the last six years at least 600 CHers have started the anti-inflammatory regimen of vitamins and minerals with at least 10,000 IU/day vitamin D3.  In the first 30 days of treatment, 83% of these CHers have experienced a significant reduction in the frequency, severity and duration of their CH.  75% experienced multiple 24-hour pain free periods and 54% remain essentially pain free.  This regimen is effective for episodic and chronic CHers although episodic CHers have a slightly better response.  This regimen is also effective for Migraineurs in preventing their headaches.

 

If you’re in doubt about starting this regimen, see your PCP or neurologist for the 25(OH)D lab test and read Zd10’s post as well as the three following links to posts by other CHers who started this regimen:

 

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1393027277/2/#2

 

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1425/1425#

 

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1465/#1465

 

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404/278/#278

The "Go To" link with info on all the anti-inflammatory supplements, their doses, drug interactions and contraindications can be found on page 1 of the following link at CH.com.  I try to keep this thread updated with the latest survey data.

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

The following table represents the latest list of anti-inflammatory regimen supplements and doses:

 

 

I've found the following supplements shown by brand in the photo below are formulated with most of the supplements we need.  I buy them at Costco, but you should be able to find similar formulations at most Vitamin Shoppes, supermarkets, Wall-Mart or over the Internet at iherb.com and amazon.com:

 

 

If you can’t get to a Costco outlet, a CHer in the UK has found a source for all the needed supplements at iherb.com.  See his post at the following link for details on how to order them over the Internet:

 

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1890%20#1890

The vitamin B 50 Complex is not shown.  You’ll need a 3-month course of vitamin B 50 Complex to handle any deficiencies among the seven B vitamins.  Although the Super K with vitamin K2 complex isn't essential in preventing CH, it is needed to handle the increased serum calcium made available by taking vitamin D3 at the doses we take.

There are a growing number of studies finding the super K2 complex helps direct calcium away from soft tissues and arteries directing it instead to bones and teeth improving overall bone mineral density.  If you’re taking blood thinners, vitamin K1 is contraindicated.  Vitamin K2 (MK4 and MK7) can affect clotting so be sure to discuss it with your PCP or neurologist before taking it.

There are also a number of studies that have found people with a vitamin D3 deficiency are frequently also deficient in magnesium.  Most CHers taking this regimen have found the suggested 400 mg/day magnesium sufficient.  This is also the RDA for magnesium

Most CHers who have started this regimen in the last two years and had their 25(OH)D results come back below 30 ng/mL, have used the accelerated vitamin D3 dosing schedule and found it got them pain free faster than taking the maintenance dose of vitamin D3 at 10,000 IU/day...  The two accelerated vitamin D3 dosing schedules follow:

On day one, take the entire regimen with 10,000 IU/day vitamin D3 and two of the Omega-3 Fish Oil liquid softgel capsules along with one each of the remaining supplements the first day.  If there's no allergic reaction to these supplements (very rare), proceed with either the 2-Week or 4-Week loading schedules:

 

Two-Week Vitamin D3 Loading Schedule

Week 1.  50,000 IU/day vitamin D3 for one week.  Take all the other supplements

Week 2.  40,000 IU/day vitamin D3 for six (6) days then drop the vitamin D3 dose to 10,000 IU/day on the 7^th day.  This will be the normal maintenance dose of vitamin D3.  Take all the other supplements and cofactors daily.   

 

Four-Week Vitamin D3 Loading Schedule

Week 1.  20,000 IU/day vitamin D3 plus one loading dose a week of 50,000 IU vitamin D3

Week 2.  20,000 IU/day vitamin D3 plus one loading dose a week of 50,000 IU vitamin D3

Week 3.  15,000 IU/day vitamin D3 and no loading dose

Week 4.  15,000 IU/day vitamin D3 and no loading dose

 

Take all the other supplements and cofactors daily, preferably with the largest meal of the day containing the most fats.  At the end of the 4^th week, drop the vitamin D3 dose to 10,000 IU/day plus the other supplements and cofactors.  The following graphic illustrates the difference in 25(OH)D response times between the 2-Week, 4-Week loading schedules.

 

 

These two vitamin D3 loading schedules are safe, equally effective and should result in a rapid 25(OH)D response to therapeutic concentrations near 80 ng/mL with a significant reduction in the frequency, severity and duration of CH faster than at the maintenance dose 10,000 IU/day vitamin D3. 

 

The target serum concentration for 25(OH)D is 80 ng/mL so the total loading dose can be adjusted at the rate of 100,000 IU vitamin D3 per 10 ng/mL of 25(OH)D response.  Vitamin D3 is lipophilic so adjustments can also be made for BMI.  Accordingly, if the BMI is <18.5, subtract 100,000 IU from the total loading dose.  If the BMI is ≥ 25, add 100,000 to the total loading dose.

 

Lab tests for serum 25(OH)D, calcium and PTH should be conducted at the completion of either loading schedules.  Results should indicate a 60 ng/mL gain above the 25(OH)D baseline/starting serum concentration.   Another set of lab test of serum 25(OH)D, calcium and PTH should be conducted three months after completion of either vitamin D3 loading schedule while on the maintenance dose.  This should provide sufficient time for the 25(OH)D response to the maintenance dose of vitamin D3 to reach a stable equilibrium.  Adjustments to the vitamin D3 maintenance dose can be made at this time to maintain a target 25(OH)D serum concentration of 80 ng/mL, (200 nmol/L).  Routine follow up lab tests for 25(OH)D should be done on a six month or yearly basis.

 

Regarding oxygen therapy... In researching why oxygen regulators with flow rates high enough to support hyperventilation and oxygen demand valves were more effective with shorter CH abort times than a constant flow regulator at 15 liters/minute, I found that lowering serum CO2 was a key component in obtaining fast and reliable CH aborts.  A lower arterial CO2 content elevates the arterial pH (more alkaline) and this is a more powerful vasoconstrictor than oxygen even at 95% purity from the oxygen concentrator.  The elevated alveolar pH enables blood hemoglobin to upload roughly 15% more oxygen so this turbocharges the blood oxygen flow to the brain to help make the abort even faster and more reliable.

 

Around 2011 I developed a new method of oxygen therapy called Hyperventilation and Oxygen Therapy that has proven to be just as effective as a 40 liter/minute regulator or an oxygen demand valve in delivering rapid and reliable CH aborts.  It essentially calls for hyperventilating at forced vital capacity tidal volumes with room air for 30 seconds followed by the inhalation of a lungful of 100% oxygen that's held for 30 seconds before exhaling into the room and repeating the hyperventilation with room air.  Hyperventilating with room air accomplishes the same thing as hyperventilating with a regulator set at 40 liters/minute or an oxygen demand valve except it uses no oxygen.  The only oxygen consumed with this method of oxygen therapy is the inhaled lungful ~ 4 liters, that's held for 30 seconds.

 

This method of oxygen therapy consumes roughly 4 liters of oxygen a minute and results in an average abort time of 7 minutes for a total of 28 liters of oxygen per abort.  That's roughly a tenth the amount of oxygen consumed with each abort with an oxygen demand valve or high flow regulator set at 40 liters/minute.

 

I also invented what I call the Red Neck Oxygen Reservoir Bag made out of a clean 40 gal trash bag or 30 gal kitchen garbage bag.  I use a plastic Coke bottle with its cap and the bottom cut off as the mouthpiece, the tubing from an old disposable non-rebreathing oxygen mask, some electrician's tape and some Duck tape.  After the Coke bottle mouthpiece has been inserted through one corner of the bag's bottom and the oxygen tubing through the other corner, I seal both with electrician's tape for an air tight seal then close the open end of the bag with a strip of Duck tape as illustrated in the following photos.

 

 

You make sure the cap is secure on the Coke bottle then plug the oxygen tubing into the barb fitting on the oxygen regulator and turn it on.  When the Red Neck Reservoir is filled completely, turn off the oxygen supply valve.  The Red Neck Reservoir is now ready for use to abort a CH using the method described above.  All you need to do is unscrew the Coke bottle cap to inhale the lungful of oxygen then replace the cap.

 

Other than the cost at less than $1, there's one more benefit of this contraption... There is no inhalation resistance.

 

Hope this helps...

 

If you have questions please contact me here at Clusterbusters or Skype me.  My Skype Name is pete_batcheller.

 

Take care and please keep us posted.

 

V/R, Batch