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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

You sound really pissed here. I am just giving people more information so they can make an informed decision for themselves. Nothing I said was untrue. Most people on this site seem grateful for more information, not less. You also seem like you have seriously fallen prey to drug war propaganda. If you are really going to say that you should try a pharmaceutical that might increase your chance of a life threatening infection instead of cannabis I'm guessing you don't know enough about cannabis. And if you take a drug for a condition it is not called "a habit". It's called taking your meds. And no I don't know what it is like to have Chron's. Either do you. Your friend does and my friend does. What's your point? (And I would advise Turmeric over curcumin any day. 1 gram a day, freshly chewed up) I agree that you should get an opinion, but remember that it is just an opinion. Tests and more info is great but quite a few of us have found that when they take the meds that most doctors prescribe they are worse off then before. Most times I have gotten more accurate from members of this site than I have from doctors. Remember that you are on a Cluster headache page that most people come to because doctors know almost next to nothing about their condition. In fact the only way I was able to find a good neuro was through this site and I have been dealing with this since 1998. My bet is that we will accomplish more by working together and sharing info instead of arguing but I think that is going to be up to you. -Ricardo

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!

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)??

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

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