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Dylan the potato

Having pain downplayed

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  So im a tad nervous. I've been diagnosed for a little while and i haven't yet actually interacted with anyone else who deals with this before and i thought here would obviously be the best place to get other sufferers perspectives. I'm 20 years old though ive been dealing with it since i was 18. Before my diagnosis i didn't even know what CH is and..right now im still adjusting to all this. I've had a tendency to have trouble interacting with people who don't have CH and actually have become a bit fearful of telling others about it due to some actually getting angry with me when i describe the pain I've been dealing with..like they're appalled with how much im "blowing it out of proportion." I've had a lot of negative responses from people i try to reach out. Most people try to avoid me so they don't have to hear about it and i'm not trying to make them uncomfortable i just want a little support. I hate that everyone sees me as whiny and overdramatic now.   Any way..im sorry for all the off topic rambling about my current state of mind..i kinda was just curious to hear some other people's experiences with having their pain downplayed or how others have responded to what we suffer with here,and just vent here a little bit, and if maybe there's any tips you have on interacting with others that'd really help..im just kinda confused and lost right now

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Dylan',

I'm pretty sure that practically everyone with CH has the same issue.  At the most basic level, no one who does not have CH can understand the pain. You could suggest they watch one or two of the many youtube videos of people having CH attacks, or refer them to Wikipedia, which says this about the pain: "The pain of CH attack is remarkably greater than in other headache conditions, including severe migraine. The pain is typically described as burning, stabbing, boring or squeezing, and may be located near or behind the eye.[13] As a result of the pain, those with cluster headaches may experience suicidal thoughts during an attack (giving the alternative name "suicide headache" or "suicidal headache").[14][15] It is reported as one of the most painful conditions.[16]" 

Like you say, what you really want is just some support without people judging or criticizing you.  There are a couple of documents created by ClusterBusters, one shorter one called "20 Facts About Cluster Headaches" and one that's longer, called "Living with Cluster Headaches," which contains about 25 stories from people with CH. The crazy thing is that we can't attach or post documents here.  If you PM me, I could maybe figure out how to send you a copy. (They're also posted in the Files section of the Facebook group called "Cluster Headaches," along with some other things that people have found helpful for explaining their situation to others.  You have to wade through a lot of stuff to find them there.)

What are you doing for your CH?  Do you have oxygen?  Are you doing the vitamin D3 regimen (see the ClusterBuster Files section of this board for more about that)?  Taking any meds?

 

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Welcome Dylan, sorry that you have to be here but we are here for you.

In my case, it's less difficult than in other countries to find people who understand our pain and emotional/social suffering. There is a clusterhead with untreatable CH in my county, he has appeared quite a lot on the news and this helps all the clusterheads in my county, we can just refer, sadly, to this guy and most people know him. 

Even tough, most people just see it as severe migrains and will never understand until they feel it. I turn mostly to my girl when I'm at my worst. I have started to open up to my family lately and showing them what living with CH is really like. They try really hard to understand. 

If you can treat it, with O2, D3, triptans etc there's still "living" besides surviving the clusters. I was diagnosed with CH when I was 19, after having it for 2 years. Failed school etc. 6 years later I went back and now I just finished my university college and started to work as a paralegal. I have a very understanding employer who also gets benefits from the state for hiring me (the state pays part of my social burden and extras when I can't work because of the clusters). 

It isn't easy talking to people , let alone an employer. But there are people who understand. Hiding the pain and side effects from meds is nearly impossible, talking about it to people who really care for you is the first step.  

People who don't understand after you show them what this pain does, who don't want to, are not worth your time. I just let them talk don't listen. (picture monkey with instrument in homer simpsons head :) ) just knot and don't let it get to you. 

Hope this helps a bit, if not, we find some comfort in each other, here in this forum 

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Well CHFather i can understand it being such a common issue with CH. If i didn't have it im sure id have been a bit skeptic. I feel as though if i tried they'd never actually watch or read through it though i could try. I just also dont want people to think i expect a lot of attention. I do feel guilty for having this...i feel guilty talking about it even because i feel it makes others uncomfortable. As for what im doing ive been working through the motions. I'm still new to the CH world as even the first couple years i didnt know what i had and had gotten to a point of begging Drs for any kind of diagnosis. 

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20 minutes ago, MattBE said:

Welcome Dylan, sorry that you have to be here but we are here for you.

In my case, it's less difficult than in other countries to find people who understand our pain and emotional/social suffering. There is a clusterhead with untreatable CH in my county, he has appeared quite a lot on the news and this helps all the clusterheads in my county, we can just refer, sadly, to this guy and most people know him. 

Even tough, most people just see it as severe migrains and will never understand until they feel it. I turn mostly to my girl when I'm at my worst. I have started to open up to my family lately and showing them what living with CH is really like. They try really hard to understand. 

If you can treat it, with O2, D3, triptans etc there's still "living" besides surviving the clusters. I was diagnosed with CH when I was 19, after having it for 2 years. Failed school etc. 6 years later I went back and now I just finished my university college and started to work as a paralegal. I have a very understanding employer who also gets benefits from the state for hiring me (the state pays part of my social burden and extras when I can't work because of the clusters). 

It isn't easy talking to people , let alone an employer. But there are people who understand. Hiding the pain and side effects from meds is nearly impossible, talking about it to people who really care for you is the first step.  

People who don't understand after you show them what this pain does, who don't want to, are not worth your time. I just let them talk don't listen. (picture monkey with instrument in homer simpsons head :) ) just knot and don't let it get to you. 

Hope this helps a bit, if not, we find some comfort in each other, here in this forum 

It definitely is not easy talking with people but it is nice when they at least try to understand. It is really nice to actually talk to people on the issue. Thank you so much for the kind words

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6 hours ago, Dylan the potato said:

I do feel guilty for having this...i feel guilty talking about it even because i feel it makes others uncomfortable.

You are obviously a very self-aware and empathetic person. One of the things that interested me as I helped put together the "Living with CH" booklet was how many people with CH go to great lengths to hide it from others.  There was a woman here a while back who hid it from her husband and kids for many, many years.  Mostly because they don't want others to worry about them (or bother them) when there's nothing they can do, partly because they feel embarrassed by how they act during an attack (it is of course wrong to feel that way, but some people do), and partly out of some feeling of guilt, as you say.  

6 hours ago, Dylan the potato said:

As for what im doing ive been working through the motions. I'm still new to the CH world

 

6 hours ago, Dylan the potato said:

If you can treat it, with O2, D3, triptans etc there's still "living" besides surviving the clusters.

Actually, MattBE said that, but I can't figure now out how to delete or change it.  This is perfectly put by MattBE, and I really want to urge you to be your own CH expert, and not rely on doctors.  It's not all that complicated.  There are a limited number of medical treatments, which you can read the basics about here: https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf    OXYGEN is by far the most important, and many/most doctors fail to prescribe it.  You might have to advocate for yourself. (The best doctors are the ones at headache clinics -- even most neurologists are not very good with CH.)  Beyond prescription medications, the D3 regimen that I suggested to you before can make a huge difference, but you have to get started on it.  Please get back to us as you go through this process.  There is a lot of good advice here.

 

Are you having CH attacks now (are you in a cluster cycle)??

 

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Right there with you Dylan. Clusters are very isolating. I've never met another clusterhead in person and no one seems to get it. It also sucks that many social events revolve around alcohol. I literally never see my friends once a cluster starts. College years were very hard too in that regard. So many Friday nights spent alone, or out drinking to fit in only to get ramrodded at 12am by a headache. Hang in there!

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On 3/4/2018 at 8:13 PM, CHfather said:

You are obviously a very self-aware and empathetic person. One of the things that interested me as I helped put together the "Living with CH" booklet was how many people with CH go to great lengths to hide it from others.  There was a woman here a while back who hid it from her husband and kids for many, many years.  Mostly because they don't want others to worry about them (or bother them) when there's nothing they can do, partly because they feel embarrassed by how they act during an attack (it is of course wrong to feel that way, but some people do), and partly out of some feeling of guilt, as you say.  

 

Actually, MattBE said that, but I can't figure now out how to delete or change it.  This is perfectly put by MattBE, and I really want to urge you to be your own CH expert, and not rely on doctors.  It's not all that complicated.  There are a limited number of medical treatments, which you can read the basics about here: https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf    OXYGEN is by far the most important, and many/most doctors fail to prescribe it.  You might have to advocate for yourself. (The best doctors are the ones at headache clinics -- even most neurologists are not very good with CH.)  Beyond prescription medications, the D3 regimen that I suggested to you before can make a huge difference, but you have to get started on it.  Please get back to us as you go through this process.  There is a lot of good advice here.

 

Are you having CH attacks now (are you in a cluster cycle)??

 

First off i want to thank everyone here this is really the best I've felt emotionally for a while now. I am in a cycle now..its kinda what pushed me to get on here. I'll try to be as involved in the community as i can. 

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16 hours ago, Heavenly_Blue said:

Right there with you Dylan. Clusters are very isolating. I've never met another clusterhead in person and no one seems to get it. It also sucks that many social events revolve around alcohol. I literally never see my friends once a cluster starts. College years were very hard too in that regard. So many Friday nights spent alone, or out drinking to fit in only to get ramrodded at 12am by a headache. Hang in there!

Thank you so much. Yeah social events its either rough being the only one not intoxicated or people seem to try and to push you into it. I suppose that's why we get on here. To swap advice and speak with others who also have it. 

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1 hour ago, Dylan the potato said:

I am in a cycle now..

Here are a few things you can try to deal with your attacks without oxygen and meds, and before the D3 regimen kicks in.  Energy shots (5-Hour Energy) at first sign of attack can be very effective for stopping an attack or making it less severe (they don't keep most people up at night); melatonin at bedtime (start with about 10mg, maybe, and go up or down as appropriate); feet in very hot bathtub to at least slow down an attack; sip ice water through a straw aimed at the roof of your mouth, with the objective of creating "brain freeze" (or try holding something cold, such as frozen juice concentrate, against the roof of your mouth with your tongue)   Stay hydrated -- lots and lots of water.  You could try Benadryl (25 mg every 4 hours and 50 mg at night -- but not if you are also taking melatonin at night); there's a theory that allergies/histamines make CH attacks worse, and Benadryl will help. When you have an attack, inhale cold air from an air conditioning unit (or outside, if it's cold).  Read the list of triggers in the ClusterBuster Files section--for example, a lot of young folks take in a lot of MSG, and it causes attacks for some people. 

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Not much to add but just to say re the feeling of left out of social activities. I do get that... but at one time in my life...pre-ch...the best parties were when I stayed sober (on purpose)...and watched the hilarity ensue. Made great friends with another person doing same.....we had more fun than the 'inebriated" methinks....I'd smile and nod when cajoled....and then keep giggling.....

Re "hiding" a hit. It IS embarrassing, it is PAINFULLY gut wrenching when you know people watching you (especially loved ones) are DAMN scared. Several times I had to adamantly refuse 911 "help" when I was in no condition to argue (mostly avoided by hiding GOOD). And maybe this is a guy thing...but for ME...it was the COMPLETE helplessness of TOTAL VULNERABILITY. I remember one guy at work...who I love like a brother...but who for some reason enjoyed hunting me down and surprising me while I rode out a "private" hit. He burned up some karma there....................................... 

Best

Jon

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14 hours ago, CHfather said:

 

 

Here are a few things you can try to deal with your attacks without oxygen and meds, and before the D3 regimen kicks in.  Energy shots (5-Hour Energy) at first sign of attack can be very effective for stopping an attack or making it less severe (they don't keep most people up at night); melatonin at bedtime (start with about 10mg, maybe, and go up or down as appropriate); feet in very hot bathtub to at least slow down an attack; sip ice water through a straw aimed at the roof of your mouth, with the objective of creating "brain freeze" (or try holding something cold, such as frozen juice concentrate, against the roof of your mouth with your tongue)   Stay hydrated -- lots and lots of water.  You could try Benadryl (25 mg every 4 hours and 50 mg at night -- but not if you are also taking melatonin at night); there's a theory that allergies/histamines make CH attacks worse, and Benadryl will help. When you have an attack, inhale cold air from an air conditioning unit (or outside, if it's cold).  Read the list of triggers in the ClusterBuster Files section--for example, a lot of young folks take in a lot of MSG, and it causes attacks for some people. 

Oh ok thank you so much for being so helpful. 

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11 hours ago, jon019 said:

Not much to add but just to say re the feeling of left out of social activities. I do get that... but at one time in my life...pre-ch...the best parties were when I stayed sober (on purpose)...and watched the hilarity ensue. Made great friends with another person doing same.....we had more fun than the 'inebriated" methinks....I'd smile and nod when cajoled....and then keep giggling.....

Re "hiding" a hit. It IS embarrassing, it is PAINFULLY gut wrenching when you know people watching you (especially loved ones) are DAMN scared. Several times I had to adamantly refuse 911 "help" when I was in no condition to argue (mostly avoided by hiding GOOD). And maybe this is a guy thing...but for ME...it was the COMPLETE helplessness of TOTAL VULNERABILITY. I remember one guy at work...who I love like a brother...but who for some reason enjoyed hunting me down and surprising me while I rode out a "private" hit. He burned up some karma there....................................... 

Best

Jon

   I'm sure for all of us its a  perfectly natural response when it comes to feelings of vulnerability and helplessness.  The feeling of having everyone's attention on you can be frightening. I know if im getting hit i want to hide away. Physical pain aside its taken a very profound psychological toll as it obviously would on anyone. I find that I'm depressed very frequently in the moments I'm not in pain. I'm paranoid when i leave my home and I'm scared to death of other people having eyes on me if i get it. 

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...yes.....the depression battles for me were ALWAYS when out of cycle...damndest thing....everybody, including my Doc kept asking me if I was depressed...almost hoping so in some odd way....maybe thinking that would confirm I wasn't exaggerating. For me, time was the healer....but it's no shame to seek and get help.....

....and also, i have to tell a potato story: I worked with a number of Japanese fish technicians...one named Yuji had a child born in Japan while he was over here. he showed the picture around and said: "he looks like a potato!" (he DID)...we all thought that was hilarious and from then on, and even now 20 yrs later....we always ask him how "potato" is doing?

Best

Jon

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On 3/6/2018 at 4:59 PM, jon019 said:

...yes.....the depression battles for me were ALWAYS when out of cycle...damndest thing....everybody, including my Doc kept asking me if I was depressed...almost hoping so in some odd way....maybe thinking that would confirm I wasn't exaggerating. For me, time was the healer....but it's no shame to seek and get help.....

....and also, i have to tell a potato story: I worked with a number of Japanese fish technicians...one named Yuji had a child born in Japan while he was over here. he showed the picture around and said: "he looks like a potato!" (he DID)...we all thought that was hilarious and from then on, and even now 20 yrs later....we always ask him how "potato" is doing?

Best

Jon

No shame in it at all,and haha wow 

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On ‎3‎/‎4‎/‎2018 at 4:23 AM, Dylan the potato said:

  So im a tad nervous. I've been diagnosed for a little while and i haven't yet actually interacted with anyone else who deals with this before and i thought here would obviously be the best place to get other sufferers perspectives. I'm 20 years old though ive been dealing with it since i was 18. Before my diagnosis i didn't even know what CH is and..right now im still adjusting to all this. I've had a tendency to have trouble interacting with people who don't have CH and actually have become a bit fearful of telling others about it due to some actually getting angry with me when i describe the pain I've been dealing with..like they're appalled with how much im "blowing it out of proportion." I've had a lot of negative responses from people i try to reach out. Most people try to avoid me so they don't have to hear about it and i'm not trying to make them uncomfortable i just want a little support. I hate that everyone sees me as whiny and overdramatic now.   Any way..im sorry for all the off topic rambling about my current state of mind..i kinda was just curious to hear some other people's experiences with having their pain downplayed or how others have responded to what we suffer with here,and just vent here a little bit, and if maybe there's any tips you have on interacting with others that'd really help..im just kinda confused and lost right now

A text message I sent to a good friend of mine, someone I could trust:
"I need someone to talk to about my CH situation. Someone not a doctor, someone not a family member, just a friend. Unfortunately, I'm struggling mentally with this and just need to talk to someone that knows me at the friend level. Don't worry, I'm not going to break down and dole out a sob story. I don't want sympathy or pity, just a conversation."

Just sending that message felt like a ton of bricks being lifted from my shoulders.

Then the conversation also went really well, another ton lifted from my shoulders.

From there, my buddy knew the facts, he knew what rumors could be dispelled and had accurate information to give out. Over the past week, amongst our mutual friends, he has been casually bringing it up, talking about how serious it is, sort of like a personal grass roots movement.

My friends get it, they understand now, thanks to him.

Best of luck to you.

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5 minutes ago, dmlonghorn said:

A text message I sent to a good friend of mine, someone I could trust:
"I need someone to talk to about my CH situation. Someone not a doctor, someone not a family member, just a friend. Unfortunately, I'm struggling mentally with this and just need to talk to someone that knows me at the friend level. Don't worry, I'm not going to break down and dole out a sob story. I don't want sympathy or pity, just a conversation."

Just sending that message felt like a ton of bricks being lifted from my shoulders.

Then the conversation also went really well, another ton lifted from my shoulders.

From there, my buddy knew the facts, he knew what rumors could be dispelled and had accurate information to give out. Over the past week, amongst our mutual friends, he has been casually bringing it up, talking about how serious it is, sort of like a personal grass roots movement.

My friends get it, they understand now, thanks to him.

Best of luck to you.

 Well he certainly sounds like a great friend to have. Good for you. I've met people who'll outright say its ridiculous when i try to talk about it and make a list of what they've dealt with and others who'll stop and listen to what i have to say. Really even just having an open mind is a great deal of help for any person with any problem. It at least gives them someone to talk about it with

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Hello,

I am a newbie and came to this site almost for the same reason you did, plus I was looking for some alternatives to help me.  I do have a wonderful close knit support group so I am lucky there. 

I have a little different situation as I am a woman and a mother of adult children and a na-na.  I have scared my children with my CH, I have scared my co-workers with my CH.  I have scared my husband with my CH.  So far I have been able to avoid the little ones because they are usually pre-occupied.  An innate thing about pain and sickness that humans often have is to leave it or distance themselves from the fact that you are "sick" the people around you are also going through stages with trying to figure out how to "help" you or if they are going to "help" you.  It took my husband some time to understand CH because I will get a "hit" and then it's gone as fast as it came (shadows I don't really talk about) one minute he was thinking he had to dial 9-1-1 and then poof ...hey I'm ok.  He took maybe almost a year to understand exactly what was happening.  He was conflicted as well watching me or deciding not to watch me and walk away he also felt "helpless, confused, scared, sad" but it was because he didn't know what to do or what was happening and I'm glad my family does not ever have to endure this.  Some people around me down play it and don't want to talk about the fact that I have this, so we don't talk about it.  I got printouts for my husband, medical information for him to read, I helped him (and myself) learn more about it so he was armed with information to be aware.  Now he speaks for me if there is an attack coming as more often than not he notices my eye before I do.

I am a beer drinker, love my beer ... while in a cycle...NOPE...and if I do, Holy Cow I pay for it and full well know I will.  I love poker and cards with my friends Fridays we stand by a fire...BAD IDEA ALSO (for me)!!!    It has been a learning cycle for everyone around me.  Some people will be there for you and some people won't.  But I see you are a young adult person, this is going to be true for a lot of things to come in life so I will hope for lots of support for you.  I hope through your journey you find good people to surround you in everything you do not just in times of need but through all your experiences.

Take care!!

Sontye

 

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Dylan, so sorry you are going through this. I don't get CHs, but I'm married to someone who does. It makes me mad hearing people scoff at how we must be overreacting about it or trying to compare themselves to him. Every time he or I tells someone that he gets cluster headaches, the response we get is always "Oh I know how he feels because I get terrible migraines" or something to that affect. His parents are actually the worse offenders and finally stopped trying to call his headaches migraines after I sent them a youtube video of someone suffering through one. My husband and I have just gotten to the point where we don't really tell people what's going on because it's not worth the aggravation or frustration of trying to explain to people what CHs actually are.

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I tend to say google "The most painful condition known to medical science." CH always seem to be on the first page of results. Now let that quote sink in for a minute. Good luck with CH. I also got diagnosed at the age of 18. 

 

 

 

 

 

 

'

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