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I took phenibut (GABA analogue) a few times to see if any positive impact on sleep. It induced these symptoms severely to the point that I immediately discontinued use. I would jerk awake many times while falling asleep certain that my breathing stopped. Sometimes a loud sound was present and sometimes not as I remember. Nothing like jerking awake several times with the feeling of not breathing to help a good nights sleep. It happens occasionally to me in any event but with phenibut it was magnified enormously.

Just thinking about drinking during a cycle makes me lay on the floor in a fetal position and whimper. I guess that has its positives since if it was prophylactic then I would surely drink unhealthy amounts.

Ah yes I know the feeling well. My brain really works at a very high level for a period afterwards also. Memory is excellent and thought is clear and focused. I also verbalize more just after-I survived again.

Fortunately I am an engineer so was able to get through cluster periods with no long term impact.

I enjoyed your poem MG (in a literary sense )

Actually my first diagnosis in my teens was from an ophthalmologist and it was transient glaucoma episodes in my right eye. He prescribed diamox the typical glaucoma medication. So in the middle of a horrific cluster headache I am throwing down diamox like m&m’s with absolutely no impact. Huge overdoses of diamox. I was told later that I could have collapsed structures in my eyes. The ophthalmologist finally referred me to a med college ophthalmology department and a resident did my intake. I start going through my symptoms and he asks a few questions and his questions are extremely appropriate. He says I know what you have-cluster headaches. The ophthalmologist then concurred. This was in the 70’s. At least I knew what was happening then because the treatments in any event were ineffective I went through the usual cafergot and sansert and propranolol but nothing helped. I just had to ride them out and try to manage so not a big ongoing impact on my life. Nothing like sitting at work trying to survive an attack with a droopy red tearing eye and half your face noticeably swollen. I always felt elation when I survived a headache and especially when a cluster wound down. My clarity of thought was always outstanding after a cluster ended. I usually had one full blown mfer in the afternoon during work hours and a less severe attack in the morning. I knew just needed to make it till the end of the work day without a complete collapse or a screaming episode and then could deal privately at home with the evening and night torment

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

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

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.

Using the commonly cited lifetime statistics of 1/1000 for clusters and 1/100 Lyme then maybe 3,000 Cluster sufferers with Lyme in US . Some small portion of that would have both active Lyme and Cluster symptoms so not common at all.

Not to make light of your terrible difficulty S.E. but your last sentence is very funny.

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.

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.

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

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.

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.

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.

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.