Looking for support/REM sleep question

[Titan32]

First time post here, just looking for some support from fellow sufferers of cluster migraines since I feel so discouraged/alone. I'm in my fourth bout of cluster migraines (2009, 2012, 2015, and now 2022). It's strange I got them every 3 years during June/July and then haven't had them since 2015, but they're back. Each bout lasts 3-4 weeks of getting average 2-3 migraines a day. This is the first time I've kept a detailed schedule (posted below) and I've noticed that I seem to get them shortly after falling asleep, usually within 1 hour of falling asleep. I wonder if some of you who are more experienced with these notice any pattern or can provide any help/advice. I want to stop waking up from headaches after each nap/sleep. Are they connected to sleep cycles and REM?

6/21 -3:00 am woke up with the first cluster migraine

6/22 - 1:30 am migraine after a 1 hour nap. Painful, nose running, etc.

6/27 - 10:30 am after 1 hour nap - very very bad

*missed writing one down?

7/2 - 10:30 am after 1 hour nap. Most severe yet.

7/3 - 4:30 pm out of nowhere. Longest lasting but not as severe as yesterday.

7/5 - 9:30 pm terrible, most severe, throwing up, taken by ambulance to hospital. 

Went to Neurologist 

7/6 - 10:00 am - severe again, back to hospital

       - 10:30 pm  - one hour after falling asleep.  finally got immitrex and oxygen in which helped.

7/7 - 8:10 am - right after waking up - took immitrex and oxygen 

       - 5 pm - took immitrex and oxygen 

      -  10 pm - after 30 minute nap.  Immitrex and oxygen

7/8 - 7:30 am - took immitrex and oxygen 

        -10:30 am after wake up - took immitrex and oxygen 

        - 4 pm 

         - 9:20 pm - tried using just oxygen which didn't 

7/9  - 12:45 am- after 20 minutes of sleep, - took immitrex and oxygen, then slept until 6 am

       -  10:30 am- 1.5 hours after nap started at 9:00 am - took immitrex and oxygen 

[BoscoPiko]

Well shoot.. Sorry your here but glad you found this site. There is some correlation to sleep, circadian rhythm, biological clock etc. I don't know enough about that but here is a copy and paste of a write up on it:

Discussion
Cluster headache attacks are believed to be modulated in the hypothalamus; moreover, the severe pain and typical autonomic cranial features associated with cluster headache are caused by abnormal activity of the trigeminal-autonomic reflex. The temporal pattern of cluster headache attacks suggests involvement of the biological clock, and the seasonal pattern is influenced by the number of daylight hours. Although sleep is often reported as a trigger for cluster headache attacks, to date no clear correlation has been established between these attacks and sleep stage.

Conclusions
We hypothesize that light, sleep, and the biological clock can change the brain’s state, thereby lowering the threshold for activating the trigeminal-autonomic reflex, resulting in a cluster headache attack. Understanding the mechanisms that contribute to the daily and seasonal fluctuations in cluster headache attacks may provide new therapeutic targets.

Anyhow were you doing anything to prevent CH when you were getting 3 years off? Are you on any preventative medication now? Many on here get nocturnal attacks and keep something like a red bull or 5 hour energy shot close by so they can down it and get straight to the o2 (for some reason the caffeine helps the o2 work faster) and most are able to get right back to sleep. I am thinking by the way you wrote "took" immitrex that you have it in pill form which can be somewhat slow acting verses injection. I am not suggesting that you use the immitrex that often as it has been known to cause extended cycles in some (myself included).  I'm sorry you feel down and alone and I completely understand the feeling but do try and keep your chin up, surf the site as there is a plethora of good information on here that can help you. Hopefully some of the real experts will chime in here with better information soon.

[Bejeeber]

1 hour ago, Titan32 said:

7/5 - 9:30 pm terrible, most severe, throwing up, taken by ambulance to hospital. 

This is horrible - really sorry to hear this is happening to you.

As far as I'm concerned, @BoscoPiko has become one of the trusted experts, with some most helpful observations and ideas dished out above. ^^^

Yep, sleep (definitely including naps) is truly a very common trigger. If you're going to take an imitrex pill, some have found that if taken at bedtime, it can prevent the sort of wake up attack that occurs somewhere in the vicinity of an hour after falling asleep.

1 hour ago, Titan32 said:

It's strange I got them every 3 years during June/July and then haven't had them since 2015, but they're back.

Strange yes, but it is often the nature of cluster cycles. Legions of us have recognized what seems to be a predictable, repeated cycle pattern, only to have it out of nowhere then become unpredictable, much as yours has.

Speaking of legions of us, that's about how many are finding significant prevention success with the D3 regimen and/or busting. They can be a major game changer/life changer.

Busting info can be found at the blue New Users - Please Read Here First banner above, near the top of the page ^^^.

 

 

 

[Titan32]

@BoscoPiko Thank you for responding! I've been surfing the site today and its been very helpful to know of others struggling with these. I haven't been on any preventative medicine and I'm not sure why I get on average 3-4 years off before the cluster cycle starts again. 

I am "taking" Immitrex injections now (previously had been on immitrex pill). I didn't know that immitrex can prolong a cluster cycle. Should I only take one if absolutely needed? Sometimes it's frustrating not knowing when exactly to take it because I don't know if it's just a dull "hangover" headache from the previous migraine or the start of a new one. And I'm always scared of not taking it quick enough and having to deal with the pain. 

Thank you for the tip about caffeine helping with oxygen. I didn't know that either. I'll head to the store tonight and get some energy drinks. 

[Titan32]

@BejeeberThanks for your reply. I read about busting earlier today but am confused as to what the D3 regimen is. Is there any articles you can provide regarding that or anywhere you can direct me to? 

Thank you! 

[Bejeeber]

Hi @Titan32 - there is D3 info here - a thread started by the illustrious and ultra knowledgeable @CHfather. I advise anyone fortunate to receive input from him to take it very seriously.

You'll notice this photo, worth more than a thousand words, at that link, showing exactly what pills (and quantity) to take for starters. It's the D3 regimen at a glance, something I particularly appreciate. Last I checked nobody should just go on that D3-50 as a set and forget daily dose though, without blood testing for D3 and calcium levels - it's typically more of an initial, high loading dose for fastest route to getting things under control.

[BoscoPiko]

28 minutes ago, Titan32 said:

Should I only take one if absolutely needed

I think it's an individual thing (not everyone has a bad experience) you will have to monitor the personal effect it has on you and your cycle. I won't touch it due to it drawing out a past cycle of normally 3 months to just short of 5 months. The D3 regimen has made a huge difference in my ability to stay pain free for longer durations as well as tampering down the intensity when I do get hit. I'll have to find the link and send it to you If someone dosen't beat me to it. I'm passenger rt now headed to check on my mare but I'll check back here when I get back to make sure someone sends you the link. 

[BoscoPiko]

Well there ya go the most awesome @Bejeeber sent you what you need to start the D3. I would start it straight away..

[CHfather]

I've got a lot to say to you, Titan, but I think most of it is in here, and I'm urging you to read it with some attention, even though it's long.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  One important thing you will see in there is that you can open up your Imitrex injector and get 3 shots instead of one.  Here's a direct link to that info.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/  Are you in the US?  Because here, Imitrex is very expensive and most prescriptions are very limited, and it's hard to see how you'd be using so much.  Yes, the theory is that Imitrex is for attacks that are not handled by oxygen -- taking too much of a triptan (Imitrex is sumatriptan) is bad for you and can not only extend your cycle but cause severe rebound attacks (triptan overuse attacks).  Given my misgivings about your doctor, I have some fear that your oxygen setup might not be correct. You should have a tank or cylinder, a regulator, and a non-rebreather mask. (Much more detail in the post I linked you to.) 

I also want to note, not as a putdown but just for clarification, that there really is not such a thing as a "cluster migraine." Two different things, cluster headaches (CH) and migraines (although some medications, such as Imitrex, work for both). A small number of people have both, and for an even smaller number, a CH attack is always preceded by a migraine attack.  If a doctor in the US said you have "cluster migraine," I would be very wary of that doctor. It seems more commonly used in other places, such as the UK (but it's still wrong).

[Titan32]

@CHfather

I am in the US. Last night during a CH (again 1 hour after going to sleep) I tried no immitrex, just oxygen & caffeine and it took the pain away enough to allow me to get back to sleep. Just a dull ache this morning, but am fine. I’ll try and use immitrex only in an emergency because I don’t want to prolong this cycle or get rebounds.

Here  is my oxygen set up. Does my mask need to have no holes in the side to be a nonrebreather mask? I want to make sure I’m getting the most out of my oxygen. I use 15 lpm for 15 minutes. 

thanks for the links, I’ll take a look. And thanks for the clarification on terminology. I’ve just always called them cluster migraines and no one has told me differently!

[CHfather]

This is not a non-rebreather mask (NRB).  NRB has a "reservoir bag" that fills with O2 until you breathe it in.  Yours looks to me like a regular oxygen mask. 

NRB:  

You can buy an NRB at amazon for under $10.  https://www.amazon.com/MEDSOURCE-Adult-Non-Rebreather-Oxygen-Mask/dp/B004Z8V47G/ref=sr_1_6?crid=9P5W6TOMN2PM&keywords=non+rebreather+oxygen+masks&qid=1657466467&sprefix=nonrebreather+oxygen+masks+%2Caps%2C90&sr=8-6   And/or presumably you can demand one from your oxygen supplier.  The prescription should have specified NRB.

I don't know enough to know how to get the most from the mask you have.  You need to plug the holes while inhaling.  Put tape on them and remove the mask from your face when you exhale.  Since the flow of O2 is constant, you're going to be losing O2 after you have deeply inhaled and held (the standard -- but not only -- breathing practice for CH). This might be a situation where at least temporarily Batch's "redneck" bag would help.  https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

[jon019]

...this be the Cadillac version NRB.....beloved by many a clusterhead, found at a sister CH site run by a fellow clusterhead, and the proverbial steal at $25. i've had 2 that lasted many years.....plug those damn holes in the meantime.

...the replies above are absolutely priceless and practical.... and make me smile. you won't get better anywhere else, and sadly not even a doctor's office unless you can find the exceedingly rare headache specialist....

ClusterO2 Kit - Clusterheadaches.com - Online Store

[Titan32]

@jon019 "...the replies above are absolutely priceless and practical...."

Yes, I have been amazed at the support I've found here so far and the information has helped me. I'm so appreciative of your reply as well as the others. I'll be ordering that mask today. 

[CHfather]

43 minutes ago, Titan32 said:

I'll be ordering that mask today. 

I don't think there's any expedited shipping option for the ClusterO2 Kit mask.  Since having the right mask is likely to make a big difference in your abort times (and your cycles have typically been pretty short), I'd urge you to consider getting a basic NRB, like the one at Amazon, ASAP.  I see that Walmart lists them at its site, but I don't know whether they have them in stores. 

[spiny]

You can hold mask to face, inhale, shut off O2, Exhale, turn on O2, inhale, repeat. Close those holes when you inhale so you get only the O2. 

I turn mine off at the tank when resorting to this as it is faster to get back to inhale than closing the regulator flow on the regulator. It saves gas if you don't have the bag. It worked better than a bag that was too small too. Just my experience.

[jon019]

 

1 hour ago, spiny said:

You can hold mask to face, inhale, shut off O2, Exhale, turn on O2, inhale, repeat. Close those holes when you inhale so you get only the O2. 

I turn mine off at the tank when resorting to this as it is faster to get back to inhale than closing the regulator flow on the regulator. It saves gas if you don't have the bag. It worked better than a bag that was too small too. Just my experience.

.... a cool example of i  betcha a game everyone of us have played in some form or fashion. am convinced that we resort to such because it also provides a distraction....something ELSE to do/think about....whether it saves anything or not.

...same here on the regulator/turn off the valve....fiddling with a regulator whilst being hit is beyond my patience/capabilities....

[BoscoPiko]

17 minutes ago, jon019 said:

because it also provides a distraction

This made me think of all the goofball things I do when being hit lol. Walk circles in the garrage, swing hands rotating them at the wrist like im strumming a guitar, talk to it like "it" has a conscious "for f@c#'! Sake can you just stop... Of course none of this works but it does give the illusion to anyone within sight that I'm bat shit crazy and most likely not a good idea to approach.. oh and gives me a little cardio and DISTRACTION. I never have learned how to sit still through it, I suppose I have yet to find my inner zen of calm @Titan32 I'm happy you got so much feedback on here and from some really great pain experienced/CH knowledgeable people and hope to hear some positive progress feedback from you soon. Take care!

[doctorssuck]

On 7/9/2022 at 3:14 PM, Titan32 said:

Are they connected to sleep cycles and REM?

Sorry your having to deal with this problem. My Ch's have returned too after about 3 years of relief. I found relief in playing soft music in the background while sleeping. It seemed to help keep my timing while I sleep. Before my dreams were scattered and would repeat the same segments over and over. They would always end in me waking up with a horrible CH. The music helped to deal mostly with the depression in the beginning, but seemed to help with organizing my dreams. Maybe it helped my timing systems while i sleep, not sure but I was glad my CH's were less severe and less frequent. 

[Titan32]

I think @BoscoPikoyou may have been right about immitrex injections extending a cycle because my current cycle is longer than ever before and this is the first time I've used injections. I've cut down on them (maybe 1 every 2.5 days) but still use them when oxygen & caffine don't work.  

My biggest problem right now though is sleeping issues. I still am waking up with a CH either an hour or an hour an a half after falling asleep. Most recently, for example, I woke up in pain, took oxygen and half of a 5-hour energy, and then was able to get back to sleep, but I was up again 1.5 hours later with an even worse CH that required an injection. Anyone have tips on how to get closer to a 7-8 hour stretch of sleep? I tried 5 lpm of oxygen for 15 minutes before sleeping, but didn't find that it helped. Should I be worried about caffine withdrawal? Should I bump up to 10 or more lpm before sleeping? 

Thank you.

[BoscoPiko]

8 minutes ago, Titan32 said:

I tried 5 lpm of oxygen for 15 minutes before sleeping, but didn't find that it helped

Hi Titan,

Sorry you're still getting hit. I am assuming that the 02 you tried was just to try and see if it would help you sleep/stay asleep without waking to a hit? You would need at least 15lpm if trying to abort. I typically start trying to abort at 25 then go down to 15 when I can't keep up any longer. Have you tried taking melatonin prior to going to bed? It has helped some on here if I recall correctly.  

[Titan32]

@BoscoPikoyeah, I had seen an article recommending 5 lpm before bed to help prevent a CH during the night but I think I will up it to 15 tonight plus melatonin and hope it works. 

[BoscoPiko]

41 minutes ago, Titan32 said:

@BoscoPikoyeah, I had seen an article recommending 5 lpm before bed to help prevent a CH during the night but I think I will up it to 15 tonight plus melatonin and hope it works. 

Fingers crossed for ya!

[jon019]

On 7/13/2022 at 12:33 PM, Titan32 said:

@BoscoPikoyeah, I had seen an article recommending 5 lpm before bed to help prevent a CH during the night but I think I will up it to 15 tonight plus melatonin and hope it works. 

...sorry, that musta been a one off article, pre hit o2 breathing is not recognized in clusterville as a successful practice ('81 on my case). O2 is an abortive (along with injectable triptans, THE most effective of the traditional aborts. DMT and, for some, ketamine the newer and less studied but reportedly effective). O2 inhalation effects are transitory in nature..... the effects do not accumulate. it is not a preventive. no harm in trying, if for no other reason than to prove to yourself what effect it does (or sadly, doesn't have). i've always figured  there is only one way to find out for yourself for any method discussed here...try it...in this case ya got nothing to lose but a little gas.....

...if the melatonin does not work (and you should experiment with dosage) diphenhydramine (Benadryl in USA) is worth a try...was my go to for allergy flare ups (which i suppose might have been cause for 1 hr wake ups, (discussed below)...but i didn't realize at the time)...Quercitin is another option others are more familiar with so i defer...

...for these nightly wake ups, which were only an occasional odd cycle for me when ECH....i sorta quote myself from previous, mostly applies

"...  staying on for a few mins after the hit aborted is frequently helpful. Also used to get hit hourly at night (in high cycle)...for whatever reason the O2 worked better than the usual 15 min (only 3- 5+)...but back again in an hour. What I did was: learned to wake up as soon as hit started (and no idea how I did that)...with my rig all set to go....just had to slap on mask and open valve. Left lights off, only swung knees off bed and stayed sitting, eyes closed, none of the usual movement, anger, angst, swearing...NO thoughts other than breathe-breathe-breathe-breathe (almost like a mantra). Never really woke up and could get back to sleep almost immediately. Usually got 5 or 6 hrs of sleep a night... which I was eternally grateful for because the alternative was NO sleep. Turned out my ATTITUDE about what was happening was just as important as the tools I was using...literally changed my life."

Edited July 14, 2022 by jon019

[Titan32]

Just wanted to share an update that I am doing better, but also had some questions. I seem to be out of the peak of cluster headaches as far as pain level and frequency. Unfortunately I’m still getting on average one a day. Usually waking me up out of sleep but the pain is not too severe and 15 lpm of oxygen for 15 minutes handles it. 

I definitely think the immitrex injections I took extended the cycle as previously mentioned since I’ve never had the cycle last more than 3 weeks and now am getting towards my sixth week. I’m hoping the cycle ends soon. I know the most important thing is getting rest but between my 8 mo old daughter going through a sleep regression and odd work hours for my job I don’t think I’ve gotten more than 4 hours consecutive in several weeks. Hopefully things turn around. 

A few questions: 

1. My PCP gave me a Dexamethasone steroid shot to “break the cluster” but it didn’t seem to do make any changes except give me a dull headache for 2 days. Does anyone have any recommendations to break this cycle? I am going to the doctor today or tomorrow and would like to request something different to try and am looking for advice. I’m the past she’s tried prednisone but I don’t know how effective that was either. 
2. How long should I continue the d3 vitamin regimen once my CH cycle has ended?
3. Are neurologists allowed to decline patients from paying out of pocket? I was willing to pay our local, highly-ranked neurologist organization out of pocket for my visits since they wouldn’t accept my insurance but they said they wouldn’t even allow me to self-pay and canceled the appointment. And it’s not like they’re not taking on new patients. Seemed odd and discriminatory to prevent care. 

[BoscoPiko]

9 hours ago, Titan32 said:

• My PCP gave me a Dexamethasone steroid shot to “break the cluster” but it didn’t seem to do make any changes except give me a dull headache for 2 days. Does anyone have any recommendations to break this cycle? I am going to the doctor today or tomorrow and would like to request something different to try and am looking for advice. I’m the past she’s tried prednisone but I don’t know how effective that was either. 
• How long should I continue the d3 vitamin regimen once my CH cycle has ended?
• Are neurologists allowed to decline patients from paying out of pocket? I was willing to pay our local, highly-ranked neurologist organization out of pocket for my visits since they wouldn’t accept my insurance but they said they wouldn’t even allow me to self-pay and canceled the appointment. And it’s not like they’re not taking on new patients. Seemed odd and discriminatory to prevent care. 

I don't know much about steroids other than you most likely don't want to continue them often. As far as breaking your cycle you might want to check out the blue ribbon at the top of each forum page "new users please read here first" sometimes we have to go outside of the typical treatments provided to us by Doctors/health care providers. As for your second question regarding the D3 regimen, I see no reason to discontinue it even when out of cycle, nothing wrong with a well boosted immune system!  Lastly being declined health services even when willing to pay out of pocket does seem discriminatory. Maybe try and find a headache specialist center as they would be more likely to help you than even a high ranked neuro... On a final note I wonder what would happen if you just told them that you don't have insurance?