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FIrst Time Posting, looking for advice.


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Hello, fellow Cluster Heads,

 

   I have had cluster headaches for 15 years now.   They started in my mid-twenties. I don't drink, I don't smoke, I don't use recreational drugs and drink minimal caffeine as it can trigger me. I have been able to bust them over the years with some of the PSI techniques I have learned here.  However this cycle I have been unable to bust them after 3 subsequent tries.  I broke down and went to a neurologist today who prescribed me verapamil, sumatriptan nasal spray and she was open to prescribing me several other medications if I didn't want to take the Sumatriptan due to me being very wary of it and it making my headaches worse when taken orally many years ago.  I believe the other options she said were nasal lidocaine, lithium, ergotamine and possibly Aimovig - CGRP inhibitor.  Is there one, in particular, that will help me break my cycle and get this under control?  My usual methods of busting the cycle have not worked.  Also, I should note that two things were different this time when I was trying to bust the cycle.  I continued to take my ADD medication, Adderall after attempting to bust the cycle as well as HCG and Arimidex as I am on male hormone replacement therapy currently.  Those three medications were the only things different that continued to take that I can think of when trying to bust this cycle beside some other supplements my general practitioner has instructed me to take for hormonal balance.  Any advice would be greatly appreciated.  

 

CusterMan

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As far as breaking a cycle I can not help you with that but what I have done in the last year or so is start the D3 regimen and obtained oxygen to about clusters instead of taking any other meds. 

The D3 helped bring the clusters down in length and pain level. The oxygen aborts them with no side effects. you can find much more information on both by using the search function. 

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++ to what Fun' says, particularly, in the short run, about the value of O2, and in the long run, about D3.

Based on the study results, I'd definitely give Aimovig a shot.  I had understood that it's pretty expensive. I'd say there are real concerns about the other things -- not that they might not help you, but that they have substantial side effects, including rebounds.  Here's some info about ergotamine: https://www.webmd.com/drugs/2/drug-6780/ergotamine-tartrate-sublingual/details

If you take the verap, you might have to get up to pretty high doses, as much as 960mg/day, before it really helps.

Here's a useful reference about meds: https://clusterbusters.org/wp-content/uploads/2014/03/GoadsbyClusterTreatment.pdf

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With over 22 years of personal experience with CH and nearly 8 years working with the anti-inflammatory regimen and over 800 CHers taking it, I'm of the opinion that cluster headache is enabled by a vitamin D3 deficiency and that taking at least 10,000 IU/day vitamin D3 plus the cofactors is a very effective CH preventative. 

80% of CHers who start the anti-inflammatory regimen experience >75% reduction in CH frequency in the first 30 days, some as soon as 12 hours.  50% of the CHers who start this regimen experience a complete cessation of CH symptoms in the first 30 days.  The 20% who don't respond initially usually have another condition that prevents this regimen from working effectively.  An allergy if the single largest culprit in this case.  That takes a first-generation antihistamine like Benadryl (Diphenhydramine HCL) at 25 mg every four hours and again at bed time to work effectively.

One of the best methods of oxygen therapy as a CH abortive involves hyperventilating with room air at forced vital capacity tidal volumes for 30 seconds followed by inhaling a lungful of oxygen and holding it for 30 seconds then repeat the entire sequence until the CH pain is completely gone.  The average is 7 complete cycles but it can go as high as 12 to 15 cycles at higher pain levels.

As a lungful of oxygen averages 3 to 4 liters, the average CH abort with this method of oxygen therapy consumes 21 to 28 liters of oxygen.  If you used a conventional oxygen regulator set at 15 liters/minute you'd consume roughly 250 to 300 liters of oxygen per CH abort.

The breathing technique for this method of oxygen therapy involves standing with jaw dropped like saying the word "Haw."  This gives the diaphragm full range of motion and free flow of air through the mouth and that enables better lung ventilation.  Exhale rapidly until it feels like there's no breath left to exhale then do an abdominal crunch like doing situps and hold the crunch until the exhaled breath makes a wheezing sound for a second then inhale rapidly and repeat 10 times (roughly 30 seconds).  On the 10th exhalation, hold the squeeze and abdominal crunch for 2 to 3 seconds.  This will squeeze out an additional half to full liter of breath then inhale the oxygen fully.  What this does is pump CO2 from your system faster than it's generated through normal metabolism. This elevates arterial pH and making it more alkaline as pushes your system into respiratory alkalosis.  Remember the movie The Andromeda Strain?

Increasing arterial pH also enables blood hemoglobin to attract and hold more oxygen molecules.  The combination of elevated arterial pH, lower CO2 and hyperoxia helps abort the average cluster headache effectively and rapidly.

Do you have a copy of the anti-inflammatory regimen CH preventative treatment protocol?  If not, CHFather should be able to point out a copy here at Clusterbusters.  You can also download a copy at VitaminDWiki at the following link:

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

Take care and please keep us posted.

V/R, Batch

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Thank you @Batch I really appreciate you taking the time to help.  I know that I am vitamin D deficient for sure.  I am currently taking a look at the protocol.  My only concern is I am also susceptible to ongoing kidney stones so taking large levels of D3 could solve one problem and create another.  I am doing some research on this one to make sure I don't start creating stones.  Do you know if taking my Attention Deficit Disorder medication such as Adderall can interfere with the D3 protocol or cluster headaches in general?

ClusterMan

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8 hours ago, CLUSTERMAN said:

Is there a preferred delivery device for oxygen?

Cylinders (not a "concentrator," which makes O2 from room air).  A regulator that ideally goes up to 25 liters per minute (lpm), (but a supplier will probably only give you a 15 lpm regulator), and a NON-REBREATHER mask.  You need a prescription from your doctor.  That prescription is provided to an oxygen supply company.  They bring you your stuff.  There is a lot more to be said about all this, so come back when you get the prescription -- before you get the delivery.  I'm being optimistic.  Even though O2 is the #1 abortive in all the medical reference books/sites, and it works very well and has no side effects, doctors often don't or won't prescribe it, and some people have big issues with insurance coverage.  If any of those things occur (no prescription, no coverage), there are still options.  So come back then, too.

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3 minutes ago, CHfather said:

 

Cylinders (not a "concentrator," which makes O2 from room air).  A regulator that ideally goes up to 25 liters per minute (lpm), (but a supplier will probably only give you a 15 lpm regulator), and a NON-REBREATHER mask.  You need a prescription from your doctor.  That prescription is provided to an oxygen supply company.  They bring you your stuff.  There is a lot more to be said about all this, so come back when you get the prescription -- before you get the delivery.  I'm being optimistic.  Even though O2 is the #1 abortive in all the medical reference books/sites, and it works very well and has no side effects, doctors often don't or won't prescribe it, and some people have big issues with insurance coverage.  If any of those things occur (no prescription, no coverage), there are still options.  So come back then, too.

Thank you @CHfather my neurologist said she was willing to prescribe O2 and I spoke with insurance today they said they would cover 80% after my deductible has been met for durable medical equipment.  So fingers crossed it will work out.  I have started the D3 Regimen and verapamil for now.  I have stopped taking most all other medications I am prescribed and hormone therapy medication I was on previously in hopes this helps as well.  So far this has helped the clusters from getting more painful however the cycle is still going and they are still frequent.

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Most O2 suppliers don't know anything about CH, so they are likely to give you the wrong stuff.  If you get a prescription and decide to go forward, call the supplier before they deliver anything.  Be sure that they understand that you need at least one large tank (an M tank or an H tank), at least one smaller tank (an E tank) for portability, a regulator that goes up to at least 15 lpm (the prescription will state a flow rate, probably 15, but if you can get the doc to write it for 25, that would be great), and a NON-REBREATHER mask.  Let us know how that goes.  The mask will work but you could also order a mask specially designed for people with CH, which many people find to be a very big improvement:  http://www.clusterheadaches.com/ccp8/ 

There have been two people here who underwent a lot of hormone replacement therapy because they were transitioning.  As I'm remembering, one felt certain that that therapy made the CH worse, and one found the opposite to be true.  That's what I think I remember.  You could try putting "hormone replacement" into the search bar ) top right of the page) and see what comes up.

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1 hour ago, CHfather said:

Most O2 suppliers don't know anything about CH, so they are likely to give you the wrong stuff.  If you get a prescription and decide to go forward, call the supplier before they deliver anything.  Be sure that they understand that you need at least one large tank (an M tank or an H tank), at least one smaller tank (an E tank) for portability, a regulator that goes up to at least 15 lpm (the prescription will state a flow rate, probably 15, but if you can get the doc to write it for 25, that would be great), and a NON-REBREATHER mask.  Let us know how that goes.  The mask will work but you could also order a mask specially designed for people with CH, which many people find to be a very big improvement:  http://www.clusterheadaches.com/ccp8/ 

There have been two people here who underwent a lot of hormone replacement therapy because they were transitioning.  As I'm remembering, one felt certain that that therapy made the CH worse, and one found the opposite to be true.  That's what I think I remember.  You could try putting "hormone replacement" into the search bar ) top right of the page) and see what comes up.

Thank you! Hats great O2 Info.

 Yes I have a feeling the HCG has something to do with it.  I was taking it to increase my sperm count for helping to get my wife pregant and up my free testosterone levels.  The doctor started me on clomephine 1 pill a week and I took that for several months without issue then he decided to switch me to HCG.  Nearly as soon as I started the HCG I think is when I may have started to get shadows.  Then the headaches progressed.  I tried 3 subsequent times to bust the cycle all about 5 or more days apart and they felt like they were going to bust the cycle but as soon as I took the HCG again they ramped up.  So I do think there is a correlation at this point.

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I have found that it was much cheaper for me to pay for my oxygen out of pocket then using insurance. call the oxygen supplyer and convince them it will be better for both you and them if they give you a few tanks. I have 3 M tanks and about 12 E tanks that I can rotate out to get filled and I manage it so I never run low enough to run out over a weekend. I am lucky with my place as they will deliver the next day as long as I call it in by 5pm the day before. I did have issues with them when I first started using them but after calling and talking with just about everyone I could and meeting and dealing with the driver things go much better now.

I ordered the cluster mask from the link above and that is 100 x's better for me and I went on amazon and ordered my own regulators for both the M and E tanks. I keep extra everything just in case i break a mask or crack a hose. I keep tanks in my house, garage, car and work. It is kind of a pain in the neck lugging this stuff all over but it is better then a pain the the side of your head..

Good luck and let us know how you do.

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6 hours ago, FunTimes said:

I have found that it was much cheaper for me to pay for my oxygen out of pocket then using insurance. call the oxygen supplyer and convince them it will be better for both you and them if they give you a few tanks. I have 3 M tanks and about 12 E tanks that I can rotate out to get filled and I manage it so I never run low enough to run out over a weekend. I am lucky with my place as they will deliver the next day as long as I call it in by 5pm the day before. I did have issues with them when I first started using them but after calling and talking with just about everyone I could and meeting and dealing with the driver things go much better now.

I ordered the cluster mask from the link above and that is 100 x's better for me and I went on amazon and ordered my own regulators for both the M and E tanks. I keep extra everything just in case i break a mask or crack a hose. I keep tanks in my house, garage, car and work. It is kind of a pain in the neck lugging this stuff all over but it is better then a pain the the side of your head..

Good luck and let us know how you do.

Thank you!!  I will see how much the O2 will cost through insurance and keep you posted on my progress.  So far I am still waiting to hear if insurance is going to approve it.

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