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an hour to type i am feeling alone

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2 years of being chronic. its just starting to wear on me now. my job is ready to let me go because after 2 years of keeping in hiding its now been outted that i have a "neurological problem". its been rough the past two years but now im at my wits end. almost ten years at my job but now im a safety hazard because sometimes i cry from one eye at work. i just dont know how i can keep this together. if you have been diagnosed you know that all the tests, MRI's, bloodwork and visits to find your solution will break your bank. i just feel like this cycle may never end. all the makeshift masks i have built. all the bathroom triptan shots that all were for nothing. i wish i was never diagnosed and just banged my head against the wall and figured it out on my own. i went into hiding because of the way people looked at me and fear of losing what life i wanted to keep.


now im just feeling alone.


not going to do anything stupid just down


also i added a pic of my mask. every doc i spoke to ordered the wrong one or it stunk. this cost me 30 bucks




3m paint respirator "half face" 

used the 2097 filters cut the plastic piece out of one of them

slipped the corner of a gallon ziplock bag through the inside and then pulled it around and attached it to the mask.

poked a hole in the bag for the o2 line and used a o2 line barb to connect it.

at 15 liters per minute it will fill the bag and constantly flush o2 through the mask.

also this mask you can completely breakdown, clean and order new parts easy.

looks cheap but it makes a seal and worked for me.

also never sealed the one side just left the filter on because if the bottle runs out i didnt want to asphyxiate. i also dont attach the back of the mask for the same reason

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Sorry to hear you're having a bad go of this round.  Have you tried the 'busting' substances discussed on this board?  I don't have hard stats, but I'd be confident to say the vast majority of us get partial or complete relief from our CH by mushrooms, or LSA (legal seeds).


I definitely sympathize with your feeling of pressure from your job.  If it happens, it happens, and something better will eventually come about.  I was let go some years ago from the most prestigious and lucrative job of my life, but really...  It was great I was let go, because so many better things happened after, that never would have happened had I stayed.


A lot of people are finding significant reduction in pain and frequency with the vitamin D regimen discussed in the 'busting files' section of the site.  A lot of people have taken the round of vitamins and reported significant improvement.



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LTD, glad you reached out.  Anyone with CH has been where you are, and it sucks.

Have you tried quickly drinking an energy shot (such as 5-Hour Energy) at the first sign of an attack at work?  Are you do anything besides O2 for your attacks?

Here's a link to the "ClusterBuster Files" section of the board where the D3 regimen is described and where the files about busting are (they're the numbered ones). https://clusterbusters.org/forums/forum/6-clusterbuster-files/

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It's my first day on this site, but I know what you mean. We are in more than enough pain never mind the isolation and loneliness that comes with it. That's my main reason for joining this support group.

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I feel ya LTDTheOtherGuy.  I have been and am in your boat along with a lot of others.  My boss does not understand what Cluster Headaches are.  He thinks they are normal every day things that everyone suffers from.  I have some friendly co-workers though who at least understand that they are different.  I have been down the road of medical expenses because I had a ruptured brain aneurysm which caused my clusters to kick off.  I have to decide if I want to go back to Occupational therapy or go back to my neurologist this month and if I can pay for the pain killers or the anti-depressants I am on (I have GAD). If I were you, I would find a Traumatic Brain Injury counselor in your area who knows about cluster headaches and see if they can help you.  I found one around here and it helps to ease my stress talking with them.


Matthew 11:28-30 

Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.â€

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I am sorry to hear about your situation with your job. Having CH is bad enough without worrying about loosing your job. I was lucky I worked for the same company for 33 years. I grew up with my bosses from 18 years old until I retired. They seen me at working with kidney stones, broken bones etc. but when I had CH I was done. you came to the wright place with Clusterbusters, there are a lot of great people that are willing to help in any way they can. You are not alone. Keep an open mind about treatments that sound crazy, they work! Good luck.

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