Cluster after 30 Year Hiatus

[plhbn]

I turned 66 on Monday. Starting at about 20 years of age I had 2-3 severe episodes/year until I was 35 and then incredibly a complete hiatus. One of my main triggers through undergraduate and graduate studies was a change in sleep patterns. If I slept late over a school break I would be hammered. I have only spoken to one other sufferer in my life who was an Opthalmologist in Houston. Besides MD he also had a PHD and was working on a second PHD focused on bio ethics. He also suffered during school holidays but believed it was due to reduction in stress whereas I thought it was due to change in sleep schedule. 

My treatments at that time were Cafergot and Propranolol. These were not effective. The oxygen and trypsan therapies were developed during my hiatus. My worst episodes were when the entire right side of my face would quickly swell in conjunction with a headache and the Alien was behind my eye trying to claw out. The clusters were mis diagnosed as transient pressure increases in ocular pressure initially and I was prescribed diamox. I was very lucky since during a headache I would overdose with diamox trying for some relief that never came. As I understand it I could have collapsed an eye with the overdoses. Once a correct diagnosis was made I changed to cafergot and propranolol but they didn’t touch a bad cluster. 

Now suddenly 30 years later I have a cluster but not a really bad cluster. Just swelling of my right eye lid,some tearing, and my right nostril plugged (I guess from swelling). The headache itself seems pretty much like an ice pick being jammed into the upper left of my right eye socket. Of course when this happens you try to determine why this might have happened. The only thing I can speculate is that I have been taking diphenhydramine for a couple months to sleep. I have been sleeping later in the morning going from say 4 hours sleep a night to 8 hours sleep so maybe the change in sleep schedule or some kind of histamine rebound effect from the diphenhydramine. 

I currently live outside the US and do not have access to oxygen therapy. I cannot locate imitrex here but can buy sumatriptan tablets. 

This current cluster is not especially strong and I have no experience with sumatriptan. I had years experience roughing it out and this is not an especially strong cluster so I can tough it out. My main concern is not doing anything to worsen the condition. Today I also took diphenhydramine when I got up. I halved the amount of diphenhydramine taken before sleep and had three headaches during my sleep period. I will have to decide what to do about the diphenhydramine dosing for sleep and must also decide about sumatriptan. I am asking for anyone’s experience with sumatriptan. Would

1) oral dosing likely be effective

2) are there significant side effects

3) could a rebound effect worsen or lengthen this cluster  

Thanks in advance for any comments you have.

BTW my undergraduate degree was from a private extremely competitive engineering school and once a cluster was over my memory and reasoning ability worked at a very high level  I was never sure if this was a result of the cluster itself or  maybe the cafergot or maybe it was just a by product of the elation that I survived the cluster but this last possibility didn’t seem the case.   

 

[Dandownunder]

HI plhbn and welcome you have come to the right place.

Ive had a decent amount of experience with oral forms of sumatriptan all forms actually apart from the injections as they are $160 i my country.

Before I was first diagnosed with Clusters, I and the doctors thought I was having migraines and I was prescribed Sumatriptan tablets.  In the early days of my headaches they were much less frequent. The tablets definitely worked better than otc and opioid painkillers I had tried and actually would kill the headache. The problem being they did take a long time to kick in, minimum 30 mins to an hour. That feels like a long when you are in agony.

After being diagnosed with clusters I was prescribed the nasal spray version. I found that to be very hit and miss. My nose gets totally blocked sometimes so I felt it didnt even get into my system. At times it worked and It would start to kill the headache in about 20 to 40 minutes.

I then tryed the wafer version, you put that in you mouth and it dissolves, I found that to work pretty well usually working in 20 to 40 minutes.

The key I found with all oral Triptans is that If you take them as soon as you feel you might have a headache coming on the more success you have at aborting the Headache quickly. Also Drinking strong coffee or a energy drink seems to make it more effective also. This method was effective for me for a fair while.

The problem I found was The worse my condition got the more I needed to take them. Not only did they start losing effectiveness but I started to feel very average, tight felling in the chest, high blood pressure, even more tired than usual, a walking zombie pretty much. At times a Headache would hit so fast and was so strong that I would take one and it wouldn't work so after an hour of agony I would take another one out of desperation then that still didnt work for another 40 minutes. Then I felt so crap for the rest of the day dizzy tired, and a few hours later it would happen again. Maybe because of a rebound effect or maybe not im not sure.

 Once I moved to Oxygen I felt much better. 

In closing oral Triptans were a saviour for me for a fair while when used at first signs of headache with caffeine and taken sparingly but were not the long term solution. 

Tread carefully and goodluck, There is a lot of information on this forum to help you improve you pain. Plenty of people to provide answers to your questions.

Dan

[FunTimes]

I have had the same experience as Dan has had. I have had the sumatriptan tablets because the injections are out of my price range. I would take them early and often just to try to stay in front of the pain.  I have chewed them up to try to speed up the relief  but that did not help and not the best taste. I would see what you can do about getting a oxygen setup either from a doctor prescription or get a welding setup and a cluster mask from here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

you can read all about the welding setup on this site and I am sure someone from your country can help you track down other abortive medications. 

Batch is someone you will want to reach out to and ask about the D3 regimen, it is a handfull of over the counter vitamins that you can take that will help reduce the amount of clusters you get. You can add Melatonin to this at night to help you sleep and benadryl 3 times a day in case you have a underlying allergy that you are not aware of. you also have some busting options that are talked about on other parts of this site you may want to look into. 

You are in a good place and have a lot of reading to do and dont forget to ask questions people from all over the world are on here and willing to help.    

[plhbn]

Thanks so much for all the comments. I am a consumer of supplements and have taken high doses of D3. Unfortunately I do not have any D3 right now but will try to track some down tomorrow. I do have calcitriol which is an activated form of D but can pull calcium from bones and calcify soft tissue.  When I took this a few months ago I also took K2 to mitigate against this but still had concerns about calcification and so stopped (I have plenty of K2 on hand).  Calcitriol increases KLOTHO enzyme that is associated with good health and longevity. After reading through this site yesterday I did take 10 mg’s of melatonin last night before bed but it didn’t seem to help. 

Sumatriptin here is about a $1/100 mg tablet and can be purchased with no prescription. I toook my daughters to a movie tonight and started feeling a headache starting. I bought a can of Red Bull at the theater (I may have had one can previously many years ago) so took a tablet and drank a half liter can of RedBull and it stopped the headache and I rejoiced. I expected to have to sit and endure it during the movie but didn’t need to.  

This is a great site that you all have created with a lot of valuable info and suggestions. I am fortunate and happy to have found it.  

 

[jon019]

Hiya plhbn...sorry the beast found your address....but welcome aboard

sleep, stress, food, barometer, activity CHANGES (like vacations) were ALL triggers for me...I stopped trying to figure out which one(s) because it basically came down to ANY changes in routine. Makes for a restricted life...yet another present from the beast. Depressing way to live...which is why forums like this to help figure a path out of the darkness....

triptans in various forms have been reported to cause rebounds and/or lose effectiveness...the goal is to make them a last resort abortive. I had my best luck with Zoming nasal spray (5 mg)...oral tabs were worthless to me....too slow. injectables effective but felt like killing a flea with a hammer and SO DAMN expensive....

OXYGEN OXYGEN OXYGEN...saved my sanity...perhaps my life. best reported success with high flow (>15 LPM) or demand system, the proper non rebreather mask (one such priceless gem available at clusterheadaches.com), and proper technique (there are several.... including breath and hold, hyperventilation)….if no medical available welding O2 is the same stuff in a different labelled tank...quite safe and usually cheaper....

energy drinks at first sign of hit and while racing for the o2 proved quite effective for me....triple strength coffee early in career, then the energy drinks came out. all taste like ass soes yur looking for content first: at least 100 mg caffeine per serving and at least 1000 mg taurine (caffeine booster). Buy by content and price...I get mine at outlet stores for $1 per 16 oz can (good for 2 hits). Red Bull too expensive and lower in the ingredients you need....

I have not heard this from others... but my first thought was perhaps you've developed a tolerance for diphenhydramine or there is some kind of rebound effect going on like with triptans. I'd try weaning off for a while and/or trying melatonin for sleep. many a clusterhead finds it helps  with nocturnal hits....

interesting comment re reasoning and memory....I had quite the opposite. used to do a lot of critical writing at work and would almost wish for a cycle when I had an important project...seemed to sharpen and clarify my thinking....out of cycle it got all muddy. similar to depression...in cycle no problem...too busy...out of cycle...DAMN!

Best

Jon

[xxx]

Hey Plhbn,

Welcome to Clusterbusters...  Sorry about the return of your CH... If there's anything predictable about this disorder is it's unpredictable...  Accordingly, crap happens...

The best form of vitamin D3 suggested today is Bio-Tech D3-50.  I buy it from amazon at the following link. 

https://www.amazon.com/Bio-Tech-D3-50-000-100-caps/dp/B00CFBAFIY/ref=sr_1_5_a_it?ie=UTF8&qid=1548523894&sr=8-5&keywords=Bio-Tech+D3-50

This is a water soluble 50,000 IU capsule that makes it far more bio-available than the oil-based liquid soft gel formulations.

Be sure to pick up some 400 mg magnesium capsules.  The process of hydroxylating (metabolizing) vitamin D3 consumes magnesium rapidly as it is need during the enzymatic process.  Without magnesium supplements, vitamin D3 will deplete available magnesium rapidly leading to muscle cramps...  I also suggest taking the rest of the vitamin D3 co-nutrients.  You can find them at the following link:

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

Regarding Cacitriol.  It is not recommended for cluster headache.  The rationale is simple once you understand the molecular biology involved.  Vitamin D3 and its first metabolite 25(OH)D3 pass through the blood brain barrier (BBB) and into neurons throughout the brain and in particular, neurons within the trigeminal ganglia.  Once there, enzymes hydroxylate the parent vitamin D3 molecule and the 25(OH)D molecule to the genetically active metabolite 1,25(OH)2D3, calcitriol. It is this metabolite that initiates the genetic expression that helps prevent CH.

It turns out the BBB has windows of maximum size of 400 Daltons (Da).  That means any molecule with a molecular mass greater than 400 Da will not be able to pass through the BBB.  The parent vitamin D3 molecule has a molecular mass of 385 Da and 25(OH)D has a molecular mass of 400 Da.  That means both can pass through the BBB although being smaller by one hydroxyl group, vitamin D3 passes through the BBB faster than 25(OH)D.  Calcitriol, 1,25(OH)2D3 has a molecular mass of 415 Da so is too large to pass through the BBB.  If too much calcitriol is taken, it can pull too much calcium from the gut causing hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

[plhbn]

Jon019

Thanks for your comments. For me unimaginable to be at the top of my game during a cluster. I was focused on surviving Hell on earth-agony, trepidation of agony, and minimizing ongoing consequences took the extent of my full capacity. Even now during this fairly weak cluster I have some headache onset indications right now and am forced to retype these simple sentences several times due to mistakes.

I tried melatonin a few nights ago and had poor results. However it was immediate release sub lingual formulation and melatonin has a serum half life of maybe an hour or slightly more (back to base line quickly in this case and likely before 8 hours). I will try to find a delayed release formulation that better mimics the natural melatonin cycle and see if that helps. 

Batch

Thank you for your comments and the linked paper. I will have no problem modifying my current supplement regime to include the recommendations. I already take much of this. The main requirement will be to add D3 back in (I stopped D3 when taking calcitriol and didn’t add it back when I stopped calcitriol due to soft tissue calcification concerns). I am absolutely certain that my serum levels of D3 are low at this time. I will also need to double my magnesium supplement intake. I am taking high quality lysinate glycate chelate chelate but at only half the recommended dosage in the paper. 

Again this is a wonderful site and I hope you all understand how much help you are. 

[plhbn]

jon019

I stopped diphenhydramine and it appears this cluster has since resolved. It must have unbalanced something that quickly resolved. In any event will soon start the D3 regimen. I recently did five day protocol of a combination of senolytic compounds and that may have dumped unusual toxins into my system and sure that didn’t help either. 

[plhbn]

What a terrible mistake. I just had one day off and my cluster then kept going strong. I tempted the fates and lost. 

[plhbn]

Now I think safe to declare this cluster over. I found 600 IU D3 capsules locally and so going through those quickly. I will be in the US next week and ordered the specific D3’s that Batch recommended and plenty of those to last a few months. 

Pain is intended to send a message from the body to the mind. Because of clusters I break pain into two categories. 1) proper intended messages 2) inappropriate messages or messages that are hopelessly muddled. Naturally my mind tries to convert these bad messages into useful intelligence. As a result I have spent much time during my life thinking about what the cluster message is. Well did I eat msg, or did I do this or that to trigger a cluster. Sometimes it results in a superstition, that is some coincidental intake or activity has been causal even when it isn’t causal. I guess if you collect enough of these and one is actually causal then you may at least reduce the probability of future clusters.

From this cluster I am going forward with no diphenhydramine (back to maybe 4 hours average sleep per night). After a further period of time out of cycle then retry melatonin at high dosage but with some delayed release to better mimic the natural melatonin cycle (when in cycle and instant release melatonin it doesn’t seem to help sleep quality materially and appears to worsen nighttime headaches).  I will continue the D3 regimen. Of course I haven’t had a drop of alcohol during this cycle and do not know if and when I will have alcohol. I remember the old days of having a few sips of social beer during cycle and the unimaginable pain that resulted. My sugar intake is currently too high due mainly to soft drinks I have been guzzling and I know that it should be reduced  

I thought about canceling the trip to the US but do not think there is a need to do so now. 

Another strange thing right now is that I have always eaten and preferred meat but at this time I have an aversion to meat hope that passes. 

 

I hope i don’t return to two or three clusters/year but if I do then will pursue mm. Also it shouldn’t actually be a problem to have the BOL compound synthesized independently. 

So glad I found this site and I will find out soon enough if the clusters will be ongoing. 

Thanks to each of you for providing input. 

[plhbn]

This is the story of the boy who cried NO wolf too often. Cluster episode again not over. I was crushed on a flight yesterday and remember that in the past when in cycle flights were brutal. Based on the oxygen info here I guess because of the lower partial pressure of oxygen during flights. Then all night last night headaches i guess due to sleep schedule change (9 time zones).  This morning even though last headache a couple hours ago residual swelling of eye lid. 

An ugly detail. I slept so soundly after my attack during the flight that I drooled to the point that my enture upper right shirt was soaked. 

[plhbn]

I obtained Batch’s recommended D3 while in the US. On my return flight-no attack. On my new sleep schedule back where I live-no attack. The only supplement lacking for compliance with the D3 protocol is Boron (I assume this is to increase free testosterone ?) and will add that shortly. So knock on wood (not sure if this has been established as medically effective :) ) life is good again. 

[spiny]

That is wonderful plhbn!!!!!!

May your pain free status last!  

[plhbn]

Thanks spiny and I hope all is well with you right now also. 

[xxx]

 Hey Plhbn,

I trust you're still CH pain free.  Boron, like the other conutrients in the anti-inflammatory regimen, supports vitamin D3 pharmacokinetics, (what the body does to vitamin D3) and pharmacodynamics (what vitamin D3 does to the body).  For example, magnesium, zinc and boron support the enzymatic processes that hydroxylate vitamin D3 to 25(OH)D3 and further hydroxylate 25(OH)D3 to 1,25(OH)2D3, the genetically active metabolite. 

These enzymatic processes take place in two domains, the bloodstream and at the cellular level throughout the body.  What happens in the bloodstream becomes a function of calcium homeostasis - building and sustaining bone mineral density.  The cellular domain is what is important to us as cluster headache sufferers (CHers)  This is where 1,25(OH)2D3 initiates the pharmacodynamics through the genetic expression process that helps us prevent CH.   This is where zinc, vitamin A (retinol) and Omega-3 fatty acids assist vitamin D3 in lowering the genetic expression of calcitonin gene-related peptide (CGRP), Substance P (SP) and other neuroactive peptides that trigger and sustain CH within neurons in our trigeminal ganglia.

Regarding testosterone, vitamin D3 plays an active role in genetic expression in more cell types than just the neurons.  In short, every cell type and system in the body functions better if there's sufficient vitamin D3 and that includes the endocrine system where testosterone is secreted.  As a side note, I caution CHers who have their spouses join them in taking the anti-inflammatory regimen, that there are several studies that have found fertility increases significantly when couples at childbearing age take the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3.

That said, if making babies is the goal, I know of no better way of ensuring a happy, healthy pregnancy and incredibly healthy babies.   I've had my daughter and niece taking this regimen for many years.  Together, they've delivered three babies who were bathed in maternal vitamin D3 from conception through breast feeding.  These babies have displayed an exceptional rate of physical and mental growth.  They don't get sick and all three are budding Einsteins... 

Please keep us posted on your progress with the anti-inflammatory regimen.  When you've been on it for at least 30 days, see your PCP for lab tests of your serum 25(OH)D, calcium and PTH.  When you have the results, please take the time to take the online survey of CHers taking this regimen to prevent their CH.  To start this survey, click on the following link:
http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6

Be sure to indicate in the comments section of this survey if you started this regimen with the accelerated vitamin D3 loading schedule.

Take care,

V/R, Batch

Edited March 2, 2019 by Batch

[plhbn]

Batch

Thank you for this information. 

I have a question about typical dosages in children. We have fraternal twin girls that are now six years of age.  What would be a typical D3 dosage in their case?

My twins are quite active-say upper 5% and one story from my recent cluster-

We have a Halloween cheerleader costume that included a megaphone.  During one of my early headaches in this cluster I was sitting and trying to focus on hyperventilating (another strategy I found on this site following on from oxygen inhalation that I do not have access to) and trying to keep muscles relaxed.  As was typical for this cluster the pain was like an ice pick through the upper eye socket with eye lid swelling and congestion with likely swelling in my right upper sinus and nostril.  I was otherwise sitting quietly.  One of the twins out of the blue decided to put the meagaphone close to my head and start yelling through the megaphone. I got her to stop and when pain free I told my wife about it because at that time her choice of such an inappropriate action (for me) was actually funny.  I will always remember sitting there and looking up looking at her yelling through the megaphone during a headache.  

My wife is taking the same D3 dosage as myself and although the girls multi has some small D3 they probably would be better served with more.  The sky where we live has been fully overcast for months and so poor natural D generation  

Thanks  

 

[xxx]

Plhbn,

Great questions.  The vitamin D3 dose for children I've been using for my grand kids over the last 8 years is 50 IU per pound of body weight per day.  If you're using the metric system it's 110 IU per Kg body weight per day.  This is a very safe and conservative dose so you can round up or down to the nearest 1000 IU.  For girls age 78 months, the 50th percentile weight is around 47.3 lbs or 21.5 Kg so the calculated dose would be 2,300 IU/day.  In this case a vitamin D3 dose of 2000 IU/day will be just fine. My grand kids also take a multi-vitamin daily with magnesium, zinc, the B vitamins, and vitamin C.

Regarding oxygen therapy at flow rates that support hyperventilation (25 to 40 liters/min), I developed this procedure in 2005 a few days after being diagnosed with chronic CH.  I modified this procedure to work with an oxygen demand valve in 2007 and hold a patent (now expired) on this method of procedure that was issued in 2009.  We did a pilot study of the demand valve method of oxygen therapy in 2008.  During this study, seven CHers, 6 chronic and 1 episodic, recorded pain levels and time to abort using an oxygen demand valve or a 0-60 liter/minute InGage® regulator from Flotec for every CH abort for a period of 8 weeks.  Together, they collected data on 366 aborts.  One study participant collected abort time data while using an oxygen flow rate of 15 liters/minute as a comparison.  The goal of the oxygen demand valve (DEVO2) method of oxygen therapy is a CH abort in 20 minutes or less.  The results are illustrated in the following graphic.

The average time to abort across CH pain levels 3 through 9 on the 10-Point Headache Pain Scale was 7 minutes.  Only 2 of the 366 aborts with this method of therapy took longer than 20 minutes, a success rate (efficacy) of 99%.  In both of these cases, the study participant was trapped away from his oxygen demand valve (once while out shopping and the second time when locked out of his house), so was unable to start oxygen therapy until the pain level was 10. As you can see, the time to abort when hyperventilating with 100% oxygen using an oxygen demand valve is three to four times faster than inhaling oxygen at a flow rate of 15 liters/minute. 

It's also interesting to note that the time to abort increases with CH pain level.  This gives new meaning to the recomendation to start oxygen therapy ASAP at the first sign of an approaching CH.

In 2010 I developed a new method of oxygen therapy that works well with low flow rate oxygen regulators and oxygen concentrators when used with another of my inventions, the Redneck Oxygen Reservoir breathing system.  This method combines hyperventilating with room air at forced vital capacity tidal volumes for 30 seconds, followed by inhaling a lungful of 100% oxygen and holding it for 30 seconds.  You keep repeating this sequence until the CH pain is completely gone.  This method of procedure results in a complete abort of a CH in an average of 7 minutes better than 95% of the time and is just as effective as hyperventilating with an oxygen demand valve except it uses one tenth the amount of oxygen.  Where an abort with an oxygen demand valve can consume 250 to 300 liters of oxygen, this new method consumes 25 to 30 liters of oxygen per abort.

You can make a DIY Redneck oxygen reservoir bag from a new kitchen trash bag, tubing from the disposable oxygen mask, a plastic soda bottle with cap and bottom cut off, some electrician's tape and duck tape.  They work great!

Fill it up ahead of time and you're ready to rock and roll when the next CH hits.  Remember to check for leaks.  The Redneck oxygen reservoir bag should remain inflated over night if all the taped openings have a gas tight seal, the bottle cap is on tight and the oxygen tubing is plugged into the regulator barb fitting.

The best procedure to use involves hyperventilating with room air at forced vital capacity tidal volumes for 30 seconds, then remove the cap and inhale a lungful of oxygen from the Redneck oxygen reservoir bag (replace the cap) and hold it for 30 seconds.  Keep repeating this sequence until the CH pain is gone.  This usually take an average of seven (7) cycles... 7 minutes and consumes ~ 25 liters of oxygen per abort.

Hmmm...  "Forced Vital Capacity Tidal Volumes."  I can hear the wheels turning... Wuzat!

This is hyperventilating with room air by exhaling forcefully until it feels like your lungs are empty (They're Not!).  At that point without delay do an abdominal crunch like doing situps and hold the crunch until your exhaled breath makes an audible wheezing sound for a second. Then without delay inhale another lungful of air and repeat the forced exhalation with crunch.  If you're doing this properly, you should be doing 10 of these exhalation-inhalation cycles in 30 seconds.  On the 10th exhalation, hold the crunch for 2 to 3 seconds.  This squeezes out an additional half to full liter of exhaled breath highest in CO2 concentration.  At that point without delay, take the cap off the Redneck oxygen reservoir bag and inhale a lungful of oxygen and hold it for 30 seconds. (remember to replace the bottle cap). Try to relax while holding the lungful of oxygen and listen to your body.  

If you've done this breathing technique properly, you should feel the symptoms of paresthesia - a very slight prickling or tingling sensation of the lips, face, hands and feet/ankles.  This is normal and a good sign you're doing this procedure correctly.  You may even feel a slight cooling of the lower back above the waist.  This is due to the constriction of the arteries and capillaries in the skin that drops the skin temperature.... what we want to happen to the vasculature in and around the trigeminal ganglia (part of the mechanism of abort).  I hope all this helps.

Take care and please keep us posted.

V/R, Batch