Dlions20

This past august was my first year and they lasted me all the way until November. I’ve had some weird tingling sensations the last few weeks and The anxiety is starting to ramp up that this may be coming back over the next few months. Always might be the wrong word, but is it most likely going to coming back at some point?

Thank you for all the replies. She did write me a script for oxygen to continue and mentioned it was effective, but I already have it anyways. I just haven’t found it to be effective for me but I bet I’m not doing it right or for long enough. The interesting thing about this place was that they prefer to find the underlying causes before just writing a much of meds. She wants me to have a neck mri ( I have already done a brain mri), sleep test, stress test and allergy test. I haven’t decided if I will do these yet but it was a new approach. She mentioned that a lot of the time their are underlying issues that can be treated to help get rid of it.

I visited a new doctor today from a headache institute. She seemed to really know a lot about cluster headaches, something the past 2 neurologists did not. She walked me through all of the common therapies i see on here and gave me some trials for sumitripan to try if I wanted. however, she wound up writing me a prescription to break the cycle, something I’ve never seen on here or anywhere else. She mentioned she’s not really a fan of verapamil. It’s a daily cocktail of methylprednisolone and meloxicam (Mobic) . I’m very wary of trying new things like this when I’ve never seen it mentioned anywhere. Does anyone have any experience?

Thanks for all the replies, this community has really helped me out a lot. the answer to all of that is yes. During my peak, I have 2-3 major attacks throughout the day, usually the same times every day, and then shadow headaches all day. It’s all on my left Side and I can’t open my left eye during an attack, usually lasting about an hour. Some nights I’m taking 10+ hot showers to deal with the pain as that’s the only thing that helps. During an attack I’m running around the house and can’t sit still. The one major issue I have is during sleep and at night. I’m a light sleeper, so every time I wake up I’m getting bad attacks instantly, without any warning like the attacks during the day, where I’ll know it’s coming by slight pains in my neck and shoulders. unlike many, I have a very different way of living where I don’t really believe in medications. I was prescribed verapamil and took it once and stopped. I then went to another doctor who prescribed fioricet with codeine but only took that once as well. Neither made my stomach feel right and didn’t think they made any difference.

In all of my readings it seems that Advil doesn’t work for CH. For me, the Advil doesn’t stop an attack and doesn’t kick in for at least an hour, but it stops more attacks from occurring for at least a few hours once it finally does. During the peak of my cycle that could be a few hours, during the down cycle it could be 12 or more hours. Does anyone else have positive effects with Advil? I’m still trying to figure out what I have and I’m done going to doctors, so trying to learn as much as I can through the community. thanks for your help.

Has anyone experienced rebound headaches with oxygen? i used it for the first time last night and after 10 minutes at 15 l/m, it seemed to go away. There was a little tingling still but I didn’t want to go too long my first time. 30 minutes later It came back, but it was a little different feeling than usual. Advil took that one way, didn’t want to take more oxygen.

Thank you !

I’m finally getting oxygen today! Really hoping it helps. My question is in regards to how much do I use it? do i only take it anytime I have a 10/10? Just want to make sure I don’t overdo it. Thanks for your help.

Thanks so much for the help. Is this something I will own?( the tanks) or do I rent them? And if im not in a cycle do i return them or hold onto it?

Thank you for the quick reply. I will ask for exactly this.

My doctor doesn’t seem to know how to correctly write the script, so I called the medical supply place and want to make sure I’m getting the right thing. The supply lady said I would be mixing the oxygen myself with a concentrator? would someone be able to explain exactly what I need? Appreciate the help! Can’t wait until I can get quicker relief.

Thanks for sharing your experience. That sounds like a horrible experience you have, regardless of how short lived it is. Unfortunate that people have to live this way.

I’m new here and to cluster headaches so I’m still trying to learn. I’m noticing lately that during a bad attack, I get about 3 attacks per session. It gets really bad for about 20 minutes , dies down for a few minutes to almost nothing, picks back up intensely and then repeats 3 times. they almost feel like aftershocks to an earthquake. Is this something others experience? Or is it normally just one bad attack and it’s done for that attack. It seems like as the days go on they are getting worse in strength and length. Appreciate any experiences here.