Just Diagnosed - scared and have questions

[Baby Moth]

Hi Community, 

Was just diagnosed with cluster headaches. Had the first cluster about two years ago and never got much help for it. This time did a lot of research and was able to receive a diagnosis, medication, and oxygen. My questions revolve around will this get worse? Is there any way to know if it will still give me breaks? Or will it get more frequent? Can it go from episodic to chronic? Is there anything I can look look into right now that is most helpful? Reading a lot an honestly it's making be more nervous. 

[BoscoPiko]

15 minutes ago, Baby Moth said:

revolve around will this get worse?

Hi BM,

CH can be really terrifying. As for will it get worse the answer is sometimes yes and sometimes no (not much help on that one)..

17 minutes ago, Baby Moth said:

Is there any way to know if it will still give me breaks? Or will it get more frequent?

Sort of the same response as above..

18 minutes ago, Baby Moth said:

Can it go from episodic to chronic?

Unfortunately yes.

 

19 minutes ago, Baby Moth said:

Is there anything I can look look into right now that is most helpful?

Yep.. That little blue banner at the top of each forum page "new users please read here first". There is a bunch of things you can try to help you prevent them from happening and abort them when they happen. I am relieved to here that you received o2 it really can be a game changer. There is a plethora of information on this site from long time sufferers as well as those with family that have CH. You can even find videos on 02 breathing techniques, proper 02 mask types and flow levels along with all kinds of tips and tricks. I would start with the blue banner, then reading up on the D3 regimen (you will want to start this reg ASAP). Cruz this site in and out, you will find help here! My last post was about being scared my clusters were coming back so I really understand the fear as do all of us. CH is hard but It's going to be ok!! 

[Baby Moth]

36 minutes ago, BoscoPiko said:

Hi BM,

CH can be really terrifying. As for will it get worse the answer is sometimes yes and sometimes no (not much help on that one)..

Sort of the same response as above..

Unfortunately yes.

 

Yep.. That little blue banner at the top of each forum page "new users please read here first". There is a bunch of things you can try to help you prevent them from happening and abort them when they happen. I am relieved to here that you received o2 it really can be a game changer. There is a plethora of information on this site from long time sufferers as well as those with family that have CH. You can even find videos on 02 breathing techniques, proper 02 mask types and flow levels along with all kinds of tips and tricks. I would start with the blue banner, then reading up on the D3 regimen (you will want to start this reg ASAP). Cruz this site in and out, you will find help here! My last post was about being scared my clusters were coming back so I really understand the fear as do all of us. CH is hard but It's going to be ok!! 

Thank you so much for your response! Okay great, I'll start there and look into the D3 regimen. Really appreciate finding this group  

[Bejeeber]

@Baby Moth, as evidenced by @BoscoPiko's reply, you sure came to the right place!

Since Bosco covered the big stuff very nicely, I'll just follow with a bit of additional color:

3 hours ago, BoscoPiko said:

will this get worse?

If left alone, or treated with certain pharmaceuticals it could, yes, but IT'S NOT GOING TO because you've happened upon the Blue Banner, D3 regimen, etc., that often enable us to prevent entire cycles - a big and most welcome deal. 

4 hours ago, Baby Moth said:

oxygen

Great that you've had the O2 prescribed. It can be essential to know that high flow/non rebreather mask O2 can really make it work great if it isn't 100% working to abort attacks when following a typical low flow etc. prescription.

 

[Shaun brearley]

Well doctor @BoscoPikoand doctor @Bejeeber , have covered most things on here that you can get started with , but ask questions and you will get answers , plus if you need to rant !!!!!!, come on here and rant , we all do it 

[Shaun brearley]

What Medication has your doctor given you just out of interest? @Baby Moth

[CHfather]

For an overview, you might take a look at this (and the reply posts and the links). https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Edited August 25, 2023 by CHfather

[Baby Moth]

Thank you! I wasn't able to get on here for a few days b/c I had too much pain. I was experiencing nightly attacks as well as level 7 pain from when I woke up to night time. Basically non functional. Unable to drive, no appetite, and suddenly depressed as hell. Basically I had been experiencing symptoms for a month and then they seriously picked up and it scared the shit out of me. 

They prescribed nasal spray triptans and sent me an oxygen tank - but didn't give me the mask so I couldn't actually use it. This was really disappointing b/c I had attacks after it was delivered. I STILL don't have the mask. 

[BoscoPiko]

10 minutes ago, Baby Moth said:

but didn't give me the mask so I couldn't actually use it. This was really disappointing b/c I had attacks after it was delivered. I STILL don't have the mask. 

Hi BM,

That's frustrating but most likely they would not have provided you with the proper mask anyhow. You can order one on this site by going here  http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit or on line just make sure it's a non re-breather mask. Be careful with the triptans, they are know to extend cycles as well and cause rebound attacks.  And just because it's helpful, here is a video to help you with breathing techniques. 

 

 

[Baby Moth]

Two days ago I micro-dosed psilocybin based on reading on this forum and some other research my partner did. First day it took my level 7 head pain that was ramping up in the morning and took it down to a level 1-2. Slept outside that night in the tent (for circadian rhythm balance / exposure) and had no attack. Did that again yesterday with a smaller dose. Head pain level 0-1 and then slept outside again, and took a night time walk both nights to watch the sunset, and again no night attack. This morning work up 0-1 pain. My hunger came back the first night of mico-dosing. Slight but there. It feels like my body is starting to return to me. I can't even believe it. 

[Baby Moth]

Thank you @BoscoPiko!! Yes, I have one ordered now. I specifically asked for the rebreather after looking it up here on this forum. I'll keep trying to get it today. 

[Baby Moth]

@BoscoPiko Do you know of others that have been helped by sleeping outside? It also helped me one night before i did the microdoseing. Slept outside, no attack. Next night slept inside, attack and pain in the morning. Then microdosed AND slept outside, no attack. Two nights in a row now. 

Im nervous that it's going to come back, yet my body seems to be slowing coming back on-line, if you know what I mean. I can still feel facial pain, so I don't think it's over. 

[BoscoPiko]

27 minutes ago, Baby Moth said:

Do you know of others that have been helped by sleeping outside?

I don't think I've seen any mention of sleeping outside helping but everyone's CH can be a bit different. It seems plausible that it might help with your circadian rhythm though.   

[Baby Moth]

@BoscoPiko

Thank you - I guess Im trying to figure out if it's placebo or not. 

[BoscoPiko]

2 hours ago, Baby Moth said:

rebreather

Just double checking that you meant non-rebreather..

[Baby Moth]

Ah yes 

[Baby Moth]

darn its the wrong one

[BoscoPiko]

19 minutes ago, Baby Moth said:

darn its the wrong one

Gosh darn it.. At least you caught it..

[BoscoPiko]

I've seen your other posts on various threads and just wanted to follow-up on what @spinysaid with regard to micro dosing. First and foremost I'm so glad that you seem to be experiencing relief! That's so promising and makes me happy for you. Second I have to ask you to follow up on here as the general consensus has been that micro dosing just isn't enough. Most that have experienced success have taken 1 to 1.5 g. Per session which leads to a mild, maybe sometimes obvious trip with enhanced color and sensation maybe even visual distortions anyhoo .. I'm cheering for you! 

[CHfather]

12 hours ago, Baby Moth said:

Two days ago I micro-dosed psilocybin based on reading on this forum and some other research my partner did. First day it took my level 7 head pain that was ramping up in the morning and took it down to a level 1-2. Slept outside that night in the tent (for circadian rhythm balance / exposure) and had no attack. Did that again yesterday with a smaller dose. Head pain level 0-1 and then slept outside again, and took a night time walk both nights to watch the sunset, and again no night attack. This morning work up 0-1 pain. My hunger came back the first night of mico-dosing. Slight but there. It feels like my body is starting to return to me. I can't even believe it. 

Edited to say that this was posted at the same time as Bosco' was posting, and I hadn't seen responses to you on other threads, such as the one from spiny that Bosco' mentions.  Maybe you've heard a lot of this already.

Okay . . . Gotta ask this.  First, what do you mean by "micro-dose"?  Enough to have any kind of "trip" effects?  Do you know the weight of the dose?  Did you dose during an attack, near an attack, or at a time when you were having no attack and not expecting one?

Are you using the triptans?

You are getting results.  That is definitely what matters.  You might be aborting individual attacks (it's just not clear to me).  Most people here use psychedelics as a preventive -- to end their CH cycle, not to stop individual attacks.  If you read the material at the "New Users -- Please Read Here First" banner at the top of the page, you'll see the method that is used by most people here and strongly recommended -- significant doses (enough for some level of "trip" if you are using psilocybin or LSD) five days apart, with no triptan usage in between.  The prevailing wisdom here is that if you take doses every day you will eventually run out of effectiveness because the receptors become blocked, and that if you use triptans, they will block the effects of busting.  I underlined prevailing wisdom because, while those beliefs are like "policy" here (because they have proven highly effective over the course of 15 years), there are people who are not so sure.  So you can continue what you are doing because it works (unless it's the sleeping outside that works, or your cycle us winding down, or you are early enough in the daily "microdosing" that nothing is blocked), or you can try it the recommended way.  In the longer run, you are almost certainly going to want to do it that way. When you get your oxygen set up it will be easier to wait the five days between. 

Speaking of your oxygen setup . . . You have a regulator?  And what kind of oxygen supplier would send a tank with no mask (and maybe no regulator)?  It's okay that you bought your mask -- it's actually cheaper in the long run than "renting" it from the O2 supplier -- but unless your doctor wrote a weird prescription, it's practically malpractice for them not to give you a mask (the standard prescription says "with NRB" (for non-rebreather)).  (I will also note that in the excellent video that Bosco' linked you to, the demonstrater is using a "demand valve," which is a different thing than a non-rebreather mask.  It doesn't have a reservoir bag on it that empties and refills as you breathe. So you might look at this one, where he's also using a mask that is slightly different from what yours will be, but it has a bag so you can see how that part works: https://www.youtube.com/watch?v=PtFHRIQN17s  Did you get big tanks, about three feet tall or more? 

I would urge you to read the file I linked you in my previous post. You really want to start the vitamin D regimen.  There's a link to it in that file.

 

Edited August 31, 2023 by CHfather

[Baby Moth]

14 hours ago, CHfather said:

Edited to say that this was posted at the same time as Bosco' was posting, and I hadn't seen responses to you on other threads, such as the one from spiny that Bosco' mentions.  Maybe you've heard a lot of this already.

Okay . . . Gotta ask this.  First, what do you mean by "micro-dose"?  Enough to have any kind of "trip" effects?  Do you know the weight of the dose?  Did you dose during an attack, near an attack, or at a time when you were having no attack and not expecting one?

Are you using the triptans?

You are getting results.  That is definitely what matters.  You might be aborting individual attacks (it's just not clear to me).  Most people here use psychedelics as a preventive -- to end their CH cycle, not to stop individual attacks.  If you read the material at the "New Users -- Please Read Here First" banner at the top of the page, you'll see the method that is used by most people here and strongly recommended -- significant doses (enough for some level of "trip" if you are using psilocybin or LSD) five days apart, with no triptan usage in between.  The prevailing wisdom here is that if you take doses every day you will eventually run out of effectiveness because the receptors become blocked, and that if you use triptans, they will block the effects of busting.  I underlined prevailing wisdom because, while those beliefs are like "policy" here (because they have proven highly effective over the course of 15 years), there are people who are not so sure.  So you can continue what you are doing because it works (unless it's the sleeping outside that works, or your cycle us winding down, or you are early enough in the daily "microdosing" that nothing is blocked), or you can try it the recommended way.  In the longer run, you are almost certainly going to want to do it that way. When you get your oxygen set up it will be easier to wait the five days between. 

Speaking of your oxygen setup . . . You have a regulator?  And what kind of oxygen supplier would send a tank with no mask (and maybe no regulator)?  It's okay that you bought your mask -- it's actually cheaper in the long run than "renting" it from the O2 supplier -- but unless your doctor wrote a weird prescription, it's practically malpractice for them not to give you a mask (the standard prescription says "with NRB" (for non-rebreather)).  (I will also note that in the excellent video that Bosco' linked you to, the demonstrater is using a "demand valve," which is a different thing than a non-rebreather mask.  It doesn't have a reservoir bag on it that empties and refills as you breathe. So you might look at this one, where he's also using a mask that is slightly different from what yours will be, but it has a bag so you can see how that part works: https://www.youtube.com/watch?v=PtFHRIQN17s  Did you get big tanks, about three feet tall or more? 

I would urge you to read the file I linked you in my previous post. You really want to start the vitamin D regimen.  There's a link to it in that file.

 

Thank you for following up. 

The attack came back last night and today I have pressure (shadows) on my right side. I actually knew it would come back last night b/c I felt the pressure come back around 9pm. Attack at 2am. I chugged water, just stuck the O2 tube in my mouth and did push-ups. It did stop the attack from taking hold. Lasted only about 30min. 

Okay. I will start the Vitamin D. Thank you for the extra push. 

The micro-doses have been about .25 of a gram, and I do feel it for about 30min.  I am worried it will wear off. Okay so a larger dose 5 days apart. I actually did a larger dose (1 gram) recreationally two days before this started. The attacks started 2 days later. Which is weird/odd timing. 

I am not using Triptans. Stopped on the 21st. 

And yes, they messed up the mask multiple times. Agree it's almost inhumane to give me the O2 with no way to use it properly. It's a big tank about 3 ft tall. It does look like I have a regulator but they just dropped it off an never told me how to use it. I ordered a mask online from a link on this site. 

[Racer1_NC]

Are you able to tell what flow rate the tank/regulator provides?

[Baby Moth]

11 minutes ago, Racer1_NC said:

Are you able to tell what flow rate the tank/regulator provides?

 

[Racer1_NC]

I'd say that's either an 8lpm (not enough) or a 15lpm (a good starting point). Hopefully the mask you ordered will come quickly. Just using the hose really isn't the best way.

[CHfather]

This is a way to make something that will work "like" a mask (in that it will hold O2 for you to breathe in, and then it will refill for the next breath).  You might or might not want to try to whole process (hyperventilating with room air, etc.).  It is recommended by Batch (whose handle here is xxx), and there are not many people here who know more than Batch does.  https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

If you do it this way, be sure to squeeze the O2 out of the bag after you have stopped the attack.*  You don't want a bag of O2 laying around.

*Actually, you should keep using O2 for a few minutes after you have aborted the attack.  It seems to help prevent subsequent attacks.  You can do this last O2 breathing in a more relaxed way than you might have used to abort the attack.