First CH and very scared

[NickMirk]

Hello,

Two nights ago I had my first CH. It had ALL the symptoms of a CH I am reading about, excruciating throbbing pain behind my right eye and temple, the need to pace around, watery eye, ended abruptly after three hours on the dot. 

I have not had one since, two peaceful nights followed. 

RMy relative is really into whiskey and I had a some straight (not drunk at all, but did drink it straight right before bed. I have also started taking the heart rate drug propranolol in the last two months for anxiety.

I'm very scared I will start getting more of them and it becoming episodic or chronic. I am a 44 y/o male. Have doctors appointments scheduled for next week. 

When you very first started having them were they spaced out a bit? 

Can anyone offer any thoughts or advice? 

Thank you,

Nick

[Rod H]

Nick sorry your here. If you scroll to the top of the page tap the blue banner and read away. All is not lost. If you truly do have clusters you have found the right place. 

[spiny]

Hi NIck!! 

I suspect that many of us can recall exactly when we were first hit. None of the stories are happy.

First step is to find your triggers. Booze is #1. Strike that off everything. Period.

Get scans done. You have that in motion. If you have CH? They will tell you that your scan was 'perfect' or 'clear'. You are eliminating other bad stuff that is treatable, not getting 'we see'.

You have no reason to think about chronic or episodic currently. You may not have CH or you may be starting out at a low level episodic. Currently, get the tests done. avoid booze, then access your situation. 

 

 

[jon019]

.....hi Nick, welcome....sorry you need to be here but we can help.

...diagnosis the first step and important for eliminating other issues, and then for insurance purposes. most primary care docs know little to nothing about CH so you may have to educate yours. best to find a headache specialist if possible...note that even most neuros are little versed. 

...read everything you can find here, especially starting with the banner link Rod pointed you to..... then ask away

best

jon

[CHfather]

Nick, here is something you might read to have a sense of the CH "landscape": https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  (the reference about "busting" that others have pointed you to is included at the end of this post, if you haven't looked at that yet).  You won't fully understand it all, and you surely won't remember a lot of it, but you'll know it's there. (I'd look at the replies, too.)  Some of the info might help you for your doctor appointment, and at the least you will have the understanding that there are many ways to treat this condition. 

It's possible that you'll never have another attack, or that you won't have one for years.  Probably the most practical thing you can do right now in case of another attack is to have a few containers of energy shots (e.g., 5-Hour Energy) or energy drinks (e.g., Red Bull) on hand.  Particularly for people in early stages, these can abort an attack or significantly lessen its severity.  For some people, even a strong cup of coffee helps.  Most people find they can drink them at night and still get back to sleep.

As spiny says, stay away from alcohol, the #1 trigger (for most people).  (If you do have CH, this isn't a lifetime alcohol ban -- most people can drink when they are out of cycle (though many choose not to).  There is a file here -- https://clusterbusters.org/forums/topic/4568-triggers/ -- with more info about triggers, but you don't need to stop doing everything on that list.  Two things many of us think of when there's a sudden attack: MSG and dental work.  Did you have either of those in close proximity to the attack you experienced?

 

Edited November 4, 2022 by CHfather

[BoscoPiko]

Hey Nick,

Looks like you have received some great responses (enough to help with your Dr. Appointment and options to prevent and abort). As for being scared, it's natural to fear pain. I think we have all been there. I know I have and something that helps me is to remember 1. I am not going to die and 2. It will stop. Lastly the more you read on here and adopt methods of self help the better things will get for you..  stay strong!

[NickMirk]

41 minutes ago, CHfather said:

Nick, here is something you might read to have a sense of the CH "landscape": https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  (the reference about "busting" that others have pointed you to is included at the end of this post, if you haven't looked at that yet).  You won't fully understand it all, and you surely won't remember a lot of it, but you'll know it's there. (I'd look at the replies, too.)  Some of the info might help you for your doctor appointment, and at the least you will have the understanding that there are many ways to treat this condition. 

It's possible that you'll never have another attack, or that you won't have one for years.  Probably the most practical thing you can do right now in case of another attack is to have a few containers of energy shots (e.g., 5-Hour Energy) or energy drinks (e.g., Red Bull) on hand.  Particularly for people in early stages, these can abort an attack or significantly lessen its severity.  For some people, even a strong cup of coffee helps.  Most people find they can drink them at night and still get back to sleep.

As spiny says, stay away from alcohol, the #1 trigger (for most people).  (If you do have CH, this isn't a lifetime alcohol ban -- most people can drink when they are out of cycle (though many choose not to).  There is a file here -- https://clusterbusters.org/forums/topic/4568-triggers/ -- with more info about triggers, but you don't need to stop doing everything on that list.  Two things many of us think of when there's a sudden attack: MSG and dental work.  Did you have either of those in close proximity to the attack you experienced?

 

Thank you so much, Rod, Spiny and Jon, and all this information CHfather. It means a lot to me right now, to understand this better, lowers the stress level. No MSG or dental work near me that day. Even though my attack lasted 3 hours and it was a blur, I did end up making coffee (albeit at the very end) and that seemed to help. It is interesting that this site revolves around magic mushrooms. I have drank quite a bit over my adult life, it has never made me hit 'rock bottom' or anything drastic. However, when I moved after the pandemic, the same brother-in-law gave me a gift certificate to a whiskey bar in my new city. Concurrently, I was given a bag of mushrooms from a friend as a going away present. Did not think much about them, but after 2 weeks in my new city, I needed to go out. So I went to the whiskey bar and grabbed that bag of mushrooms for good measure. I had the time of my life. So much fun, felt fantastic - until the next morning. Could not have felt worse, awful, sick. For many months alcohol was repulsive to me, not just a bad hangover reaction, but something had changed, like I walked through a door with the mushrooms 'curing' me for lack of a better word of wanting to ever drink alcohol again. I have not drank too much since... a little more as of late, but will definitely stop now. I pray it is just a one-time attack, I can keep you all posted if you are interested. I imagine having this group is very therapeutic for you all. It already is for me. Is it odd that I have not had another attack the past two nights? Thank you again 

[BoscoPiko]

1 hour ago, NickMirk said:

I imagine having this group is very therapeutic for you all. It already is for me

If it makes any diffrence... I will say that I'm in constant amazement of the people on here. They are beyond kind and definitely the strongest people I've ever encountered in my entire life! I had no idea that there were others like me, others that could understand and respond from the same perspective and understanding of the level of pain. When I found this place and interacted with them I found a new sense of hope! I felt so alone as I've never met a fellow cluster head. I've chosen to stay because if I can help anyone in the way this site has helped me I owe at least that much..  

[CHfather]

1 hour ago, NickMirk said:

I can keep you all posted if you are interested.

Heck yes, we are interested.  First, because if you have CH, we want to help you prevent and manage it so it has the least possible impact on your life -- in ways, including busting, that virtually no doctor will tell you about (as jon' suggests in his post).  And second because a large portion of what we know here we know from the people who come here.  CH is tricky and constantly changing, and probably never the same in all aspects from one person to the next.  It's all "citizen science" to really come closer to understanding what happens, why/when it happens, and what works to prevent it and manage it. One reason you're not getting many direct answers to your questions about first attacks and subsequent ones is that it varies from person to person. Some people have CH, boom just like that. For others there are "light" episodes or just single attacks.  And sometimes that's all there is, and sometimes a full cycle might come on pretty soon or it could be years before another one.  I don't blame you for worrying and wanting more clarity, but I feel pretty sure there is no direct answer to your questions about what might be next (if anything). 

We are even interested if you have no further attacks, so do let us know.  We'd be happy for you, and it would be another data point for us. 

If you want to be proactive just in case, you could take a look at the D3 regimen (in the ClusterBuster Files section).  It's probably good for you no matter what, and even if you start it at a lower level, you'll be building up your system with a very effective preventive.

 

Edited November 5, 2022 by CHfather

[BoscoPiko]

18 minutes ago, CHfather said:

Heck yes, we are interested.  First, because if you have CH, we want to help you prevent and manage it so it has the least possible impact on your life -- in ways, including busting, that virtually no doctor will tell you about (as jon' suggests in his post).  And second because a large portion of what we know here we know from the people who come here.  CH is tricky and constantly changing, and probably never the same in all aspects from one person to the next.  It's all "citizen science" to really come closer to understanding what happens, why/when it happens, and what works to prevent it and manage it. One reason you're not getting many direct answers to your questions about first attacks and subsequent ones is that it varies from person to person. Some people have CH, boom just like that. For others there are "light" episodes or just single attacks.  And sometimes that's all there is, and sometimes a full cycle might come on pretty soon or it could be years before another one.  I don't blame you for worrying and wanting more clarity, but I feel pretty sure there is no direct answer to your questions about what might be next (if anything). 

We are even interested if you have no further attacks, so do let us know.  We'd be happy for you, and it would be another data point for us. 

If you want to be proactive just in case, you could take a look at the D3 regimen (in the ClusterBuster Files section).  It's probably good for you no matter what, and even if you start it at a lower level, you'll be building up your system with a very effective preventive.

 

Wow @CHfather this response of yours was wonderful!

[Shaun brearley]

Hi Nick you have already had great advice my friend . I'll double down on it . Go get yourself a headache specialist best people to get proper diagnoses.  Doctors and neurologists not really good for CH . Read up on the D3 it's so good and as @CHfathersaid even if you don't have CH it will do you good . 

[xBoss]

If you really do have CH you are light years ahead of about 99% of all sufferers since most of us went through years of hell to figure it out and get diagnosed so you have that going for you. AND you are on cluster busters!

[Toby75]

I've never had one stand alone attack but on the front end I would have some days between first and second as they were ramping up.

[NickMirk]

Thank you all so much. After posting, and engaging with you all, it was amazing how much better I felt - even though I thought I was in for a really tough path in the coming weeks. The great news is, I have not had one since (I have had some VERY light versions of behind the eye pain/discomfort - but negligible). With that said, I am not drinking any alcohol whatsoever. I am prioritizing my sleep, D3, Melatonin. From what I have been reading the part of the brain that regulates sleep and seasonal (moon) cycles is very much involved. I have recently been perscribed and been taking propranolol, which had messed with my sleep cycles. I do believe taking the copious amount of mushrooms and whiskey (the night I had described) has played a part. Once I did that - and I was a moderate to heavy drinker - alcohol (whiskey in particular) became disgusting to me. I was shocked. I even said at the time - something in my brain changed. I called it 'walking through a door' with the help of the mushrooms no doubt, where I did not want to drink alcohol at all, it was poison to me. That feeling towards alcohol has eased a bit over the past 7 months since that happened. However, I had not drank much, and not straight whiskey since then, and - BAM headache hit me hard that night I did. I do believe it was a cluster headache. It had all the symptoms listed. It was very scary. The pain was not a 10 (the most painful experience a human can feel)... but I was in shock as well, so not sure how properly I could rate the excruitating pain I was feeling. I do have a history of concussions (3-4 in my life) and smoked cigarettes as a young man 20-22 years old, again 26-29 years old. Thank you for being here for me, very humbling and feel for you all as well. Nick 

[jon019]

.....so what was the diagnosis? if it's CH, the propranolol is not likely to help at all....old line migraine med that would make me wonder about the prescriber's knowledge of CH....

[Shaun brearley]

What happened at the doctor's did he give you a diagnosis.? If not you really need 1. So get an appointment wit a headache specialist,  because if it was a CH attack it won't be just a 1 off attack 

[NickMirk]

I have an appt with a neurologist specialized in headaches this week. I mention the proponoyl because it was significantly effecting my sleep patterns

[Shaun brearley]

24 minutes ago, NickMirk said:

I have an appt with a neurologist specialized in headaches this week. I mention the proponoyl because it was significantly effecting my sleep patterns

Let's hope in CH !!!!! 

[jon019]

3 hours ago, NickMirk said:

I have an appt with a neurologist specialized in headaches this week. I mention the proponoyl because it was significantly effecting my sleep patterns

...similar here...besides not helping the CH the main side effect for me was bizarre dreams...

[NickMirk]

Hi all ... so an update ... first and foremost, thank you all for being here. I have not experienced a CH again. I have, for the most part, abstained from drinking. I am not taking proponoyl regularly (it was prescribed for anxiety not the headache). So that is great news. However, I do have a dull, very mild persistent headache behind my left eye - the CH was in my right eye. So I a found a headache specialist, but won't be able to see him for a few weeks. So I am still confused, but doing OK. 

[Bejeeber]

On 11/21/2022 at 8:27 PM, NickMirk said:

I do have a dull, very mild persistent headache behind my left eye

That sounds similar to what we call shadows. Very common for Clusterheads. Switching sides is known to occur also, but I don't recall hearing of another instance where it switched following the very first attack.

 

On 11/21/2022 at 8:27 PM, NickMirk said:

So I a found a headache specialist

That's a really good thing. Not everyone manages that, so good on you @NickMirk!