[Exercise / Running while in Cycle]

Since this is back up, I have found strenuous activity does not trigger one per se for me, it is once it is finished and I am cooling down/recovering that it triggers, it might be the same kinda thing that once we relax for sleep etc it can be a trigger. Worst is after a certain strenuous activity with the 'end' of it it 99% triggers a hellish one, so thats fun.

[It’s so lonely]

I always find at about 3-4am, alone, dark, quiet rocking and biting my tongue to try and not wake anyone, to be the loneliest hour. Without the dark/black/gallows humor might not have made it this far. I have help from family and while the is freaking amazing, the depth of the pain is really isolating because it is basically unimaginable to anyone who has not experienced it. 

I tend to try and blast music or force myself to play something, if it allows me, to try and split my focus. Adhd is kinda a blessing in those cases if I can manage to grab my hyperfocus with something, it can in essence put me in a fugue state and helps to ride out the hellstorm.

[Texas heat]

Was thinking more of the Chat and Chill on stocking island in the Bahamas, think Jimmy Buffet used to frequent it. They make the best coleslaw I have ever had, a mean conch salad and a to die for conch fritter burger. Either way, on a serious note, thinking of making another trip one day to see if it really does help the head. 

[Texas heat]

Being near the mountains in Calgary Alberta, we get some extreme weather and barometric changes and I find my heads follow those. So I am going to vote pressure change. I have found going from hot to cold and cold to hot environments can trigger or increase a head as well. Like AC to outside or winter coming inside or going from warm inside to 30 below outside in the winter.

 

I did find, when I vacationed in the Bahamas, that my heads kinda leveled out and dropped some in intensity as the weather is pretty consistent along with sea level pressure. Now, I just need my healthcare to prescribe and pay for the bahamas....

 

 

[Saw this image and i could relate’ to the torture and pain]

Very relatable, my avi is one I found online that felt appropriate.

 

[Fellow cluster head musician makes album about cluster headaches]

On 5/20/2023 at 1:09 PM, spiny said:

Devonrex, Yes, I hear it there. In the beginning. 

Time is bad for that frequency. The guitar hits it a lot! Vibrates in my head in a bad way!

Most of 'the wall' has that same key through a lot of it, only noticed because this was mentioned. Also the album in the post had me thinking of floyd right off the bat, specifically the wall with the interspersed conversations and phone calls that show up in parts of the wall. I do feel it captures some of the nerve jangling 'waiting' feeling and the dread, listened to the clusterhead full album a couple times now and it does really evoke a lot of the same feelings I get. So, very well done.

[Fellow cluster head musician makes album about cluster headaches]

On 5/17/2023 at 3:02 AM, spiny said:

Thanks David! It is nice to finally know what notes can pierce my brain like that!! 

Apology not needed. I have always found it odd that the one frequency is so horrible and wondered about the how and why of it. Now it has a name and that is progress! Pink Floyd uses it in some of their recordings too and I have to skip over those! So, you are in great company! 

Goodbye blue sky immediately came to mind, the sound of the 'plane' at the beginning and throughout that recording

 

[A Few Unturned Stones]

On 5/18/2023 at 5:31 PM, BoscoPiko said:

Hey @spiny,

Yes you are correct that they cover it but only if I follow their so called protocol and  try a bunch of things I'm not willing to. They told me the next thing  I needed to try before it would be approved was a nerve block and I'm just not ok with that. 

Tried occipital and a spheno ganglion block, neither worked, the occipital one triggered one when it sent a jolt along that nerve into my temple, also rather unpleasant with the needles in the back of the head and even more so the one up the nose, so do not blame you for not wanting to try that, I know botox is a semi regular suggestion for migraines and have heard it attemted for cg, but again it is another of those "Oh, yeah here try something else that is basically anecdotally helpful" lol

[Doctor asking what your pain level is?]

I just use 2 scales in my head, cluster scale and everything else scale, outside of clusters is this the worst pain I have felt? Yes? 10 or whatever level it is outside of clusters. For example kidney stone on my cluster scale was about a 6, on my anything other than cluster scale it was a solid 9.

[Odd trigger?]

On 4/10/2023 at 2:34 PM, xBoss said:

Used to be huge triggers. Always and still gross though. 

I still have a soft spot for "Musk" my grandmas favorite.

[Odd trigger?]

I use isopropyl alcohol for cleaning 3d resin prints and find if I get too much of a faceful it can be a massive trigger and or ramp a current hit, thinking it is in part a strong scent but wondering if it could be a mucous membrane and alcohol absorbtion plays a part? Anyone else noticed similar with alcohol based product? Strong cleaners and such can do the same but rarely with the same intensity of iso vapor.

[Energy Drinks - thoughts to as why occasionally effective?]

On 4/7/2023 at 7:45 PM, BoscoPiko said:

I also use the hot water method and need no less than 105-106 to get er done.. This high temp is also effective in bringing you down from unwanted side effects from things like alternative medicine...

I tend to get in the tub, turn on the shower and sit with the water pounding on my head and keep increasing the heat until I cannot physically take it any hotter, it helps, doesn't abort but takes some edge off for me.

[Energy Drinks - thoughts to as why occasionally effective?]

Taurine also acts as an anti-inflammatory.

[Ear Ringing a Real Thing?]

Glad pup is recovering, I do not notice ear ringing but in a similar line I do tend to get what I assume is 'exploding head' as I fall asleep I will hear a huge ringing kinda wooshing odd noise that startles the hell out of me. A lot of those nights iirc I will end up getting hammered pretty hard on the rem switch timing hit.

[New member and stumped]

My pharmacist called topirimate the "California drug" cause it makes you skinny and stupid. It did help to reduce my frequency, but ended up with a kidney stone and after testing it was the kind related to taking topirimate, went off it and my entire existence exploded, 5-who knows many hits a day, days on end awake because it will not let me sleep. Others have had the same experience coming off it as well, I hope that will not be the case if and when you go off it. 

Seems my triptan experience is also not alone, was doing injections and for a while, I could abort every shot, then one day one did not have the intended effect, then more often to nearly 50/50 shot if it would work or worse and the price....bec ame untenable to pay that much to work less and less

[Very scary situation today]

I have literally quit driving. Chronic and very frequent, was going to be a time I got hit like a truck on a busy road. Had to sit for hours in parking lots waiting until I could drive to get home, pretty much has made me a recluse. Was lucky I never got a 10 while enroute but had had some crappy driving moments. Glad you made it back but this kinda makes me glad I stopped driving.

[mania and depression - are clusters a bi-product of bi-polar]

I have had depression my entire life, not bipolar, but the beast sure as hell deepens my depression. Now, I am chronic, so the leading up does not really apply but I will act manic when I have any sort of break, to get things done.

[Trepanning]

36 minutes ago, Bejeeber said:

A flip side to that, in my mind anyway, is that long ago, some indigenous peoples knew of natural treatments in the form or fungi, cacti, seeds, etc. that are what we are just now re-discovering as exceptionally effective CH preventives. So here's to our best of both worlds: Advancing science plus reconsideration of the long dismissed life saving remedies that grow right at our feet.

Very true, the fact that leeches are used in modern medicine and there are reasons to put holes in someones head that has no relation to demons.  

Edit: Also, I have been lied to, apparently I leveled up without the need of kittens, so my entire world view is shattered.

[Trepanning]

1 hour ago, BoscoPiko said:

 Knowing and being amongst others like me, in the same pain, the same battle made a huge difference. I'm not 100% why honestly. 

This here, this is a big thing, knowing you are not alone, knowing there are people who know exactly what you are talking about and would never say, oh just take an aspirin and lie down or other such nonsense, you know the people here KNOW and you feel less alone. Even in a crowd you can feel isolated by the pain and no one truly knowing.

[Trepanning]

Funny I mentioned a few months ago to family, if I was like this not all that long ago, I would be covered in leeches, cuts, enemas, and have holes drilled in my head to release the demons, so as little answers as we sometimes seem to get, it is far better than we would have got then.

[Energy drinks]

I am convinced without the dark humor gallows humor, laughing at the beast in any way, we lose one of our greatest tools to go on. Now as to the Finest of British food and drink, there was a store here, I cannot recall the name but it was a decent sized store chain that specialized in British food and other snacks from the UK my Grandma loved. Have to say, since she was a warbride from England and my mom was born there, coming over on a ship before the war was over, I picked up a taste for much of it.

 

Also, cats all the way, hence my name, my Devon is one of the only things that can reach me in the middle of a 10, can bring a smile despite the pain. So, hold on to any and everything that brings light and humor into your world. 

Sorry for going a bit deep. Also, maybe if I switched my avi, I might get a better score?

[Broke Neck-(Not Literal)]

Not as much anymore, since shit changes the moment you get 'used' to it, but my biggest 'aura' or indicator of oncoming cluster train was a hellish knot or pain just to the right bottom of the occipital bone, right where it joins the right side of the neck, it would then arc over and behind the ear into the temple and off shit went. I could never decide, if it was  bad neck setting them off by radiating pain into the sensitive nerves or if it was just a head precursor.

[How Many Times a Day?]

12 hours ago, BoscoPiko said:

Thanks Juss I'll check it out

There is an app for most phones if not all that I swear by called headspace, has guided meditation, half ass tailored to current mood. I find it helps ease the dread and the rest. 

[Headaches changing time.]

5 minutes ago, EmpiresBurn said:

Supposed to be taking place of my Topomax as a preventative.

A few here, including me, experienced a drastic shift in ch behavior coming off topirimate aka topomax.

[Headaches changing time.]

8 hours ago, CHfather said:

Incidentally, although your verap dose is probably too low to make a difference, it is the general experience (or belief) here that the instant release is more effective than extended release (ER).  If you're only taking it once a day, you almost certainly have the ER.

I would second this, when I was on it, it was at doses that concerned the pharmacist, requiring heart checks every couple weeks. They did increase it over time, so not a massive dose all at once. The general thinking or use is generally prednisone taper while the verapimal gets onboarded iirc.

As to changes, mine tend to in essence cycle forward through a month. like getting hits from 6pm to 6am then have them ease off, then about a week later it is like from noon to midnight. With some outliers like keeping me up for 24 plus hours, they will rotate forward like that in a fairly predictable pattern.