sunjunkie80

I am new here and I am just curious..Have any of you ever thought or sought out the possibility that CH initially and/or is made worse by underlying infections in the body? Also, I find that when I am sick or going to get sick, my headaches increase in frequency and tend to be more intense leading me to believe that maybe CH are somehow linked to immune system disorders or issues...I know its a shot in the dark and that many of you are probably tired of trying to figure out the when's, the why's, the how's but with me being recently diagnosed, I am desperate to find any sort of trigger or link.

Thanks! I am so thankful for this group!

Emily, I am also a female and recently diagnosed with CH. I am interested in the possibility of HC as well. Feel free to PM me if you want to, sounds like we might have alot in common!

Thanks for the great tips everyone! Luckily, I havent had to try to use the oxygen again... Although I am stuck with this nasty overall residual pain that seems to stay until I am just starting to be pain free and then I get hit again. It is almost like the inside of my head gets bruised in the same location where the pain was when I had the actual headache. Is this a shadow or does it sound different?

I think so. I found the O2 information on this website and taped up the nose holes, held it completely over my face and took in deep breaths so that I could see the bag moving in and out. Did I miss anything?

Thanks again. I guess I am going to request an indomethacin test when I go for my follow up on May 23rd. I had what I thought was a CH tonight and I tried the O2 for the first time, no change in pain level so I am feeling unsure about CH being the diagnosis. Thanks again for all the info. I appreciate it.

Hi Everyone! So in April I was diagnosed by a neurologist as having CH. I am starting to second guess this diagnosis..some symptoms fit with CH and others do not. I am 35 year old female, one sided hour long headaches (not a normal headache, these bad boys hurt) but I also have visual auras before headaches and I only have one headache per day every 5-6 days..Dont get me wrong, when I have them, they are awful but sometimes I am able to lay down and other ones make me crazy and I move, rock, swear and scream...I am so frustrated. I really want to know what I have so I can treat accordingly. I have oxygen set up at home and I heard that if you have a migraine, oxygen will do nothing for it. CH will respond to oxygen..Also, does anyone on here have a combination of both migraines and CH? I have rule out the other TAC's based on my symptoms...The only other thing I am considering is possible hemicrania continua only because I have constant residual head pain even on my days off from the major headaches...

Nice! Thanks CHfather.

Thanks for the info! I am still not sure where to put things in terms of responses, threads, etc...I apologize in advance for putting things in the wrong spot.

I was diagnosed in April of this year with CH and I have visual disturbances about 10-15 minutes before EVERY headache. Sometimes it is one eye, sometimes both. I have lost vision, had double vision, had visual disturbances (stars, lines, etc). I am very curious as to whether or not this means I have been mis-diagnosed with CH or I am one of the few that experience the aura before the headache. However, I did read something recently that stated that women who have CH, it is far more common for the CH to be preceded with an aura than it is with men that have CH. Interesting... Also, I have noticed that when I go from well lit areas to dark areas or vice versa, its a trigger and the more intense/disturbing the visual aura is correlates to the intensity of my headache..I usually know what I am in for based on my eyes.

Thanks! I find it enlightening and terrifying as I learn all of the CH vocabulary... At the same time, I find it re-assuring that I am not crazy and all of my signs/symptoms/feelings are real and finally validated. And shadows are a bitch! If anyone can elaborate on the ginger thing, I am game! Ginger tea? Grated ginger? Ginger supplement? As always, Thanks!

bdoyle021- New to this group but I was recently diagnosed with CH and I too have the most pain behind my eye and into the eyebrow area, once the attack is full blown, my pain will wrap around to the temple area and down into my neck even. I ONLY have a stuffy nose and it hurts to open the eye on the affected side but I do not have the actual drooping of the eye, redness or puffiness of the eye. I also have a residual, nagging pain that is almost always there, it is especially bad the first few days after a CH. The pain is just bearable enough to function but enough to annoy the shit out of me! Your particular beast sounds very similiar to mine. By the way, can someone have BOTH CH and Hemicrania Continua or is it one or the other? Thanks! Kelly

Thanks again for the replies. I am so information hungry right now..I might be creating false hope that I can lay these freaking headaches to rest but I am willing to listen to anyone that is willing to offer any information, advice or life saving tips. I have a definite new found respect and admiration for all of you that have lived with with these beasty monsters and still function. I am still trying to figure out how I am going to continue being a wife and mother that is worth a shit. Does anyone have pain that lingers after the headache? It feels like I spent the night in a boxing ring last night? Normal for most of you? Does any OTC pain medication work for the "after pains" of a cluster headache? Thanks again everyone! I have so many questions and you all have been so fabulous in offering up information. Truly- Thank you so much.

WOW! Thanks everyone! I really appreciate all of the replies. I have spent most of my morning a blubbering mess, the aftermath of these are definitely not a walk in the park either! I am pretty certain that these are clusters but I am not 100%. I am a female which I know is somewhat minority in the CH world. I definitely without a doubt have vision changes (blurred vision, loss of vision, double vision, etc..) before every single headache and each headache lasts about an hour to an hour and a half with stabbing, prodding, throbbing pain on one side of the head (almost always right side) and I get a stuffy nose and it hurts to even open my right eye the next day..Does that pretty much rule out migraines? Also, once I get a headache, the next few days, I have a residual and annoying pain on the affected side in which I had my headache. Is that common for CHer's? Thanks again for all of your replies. I feel better knowing that there is somewhere to go for support, advice and questions. I did get a prescription for oxygen but not for anything else. I have a follow up appt on May 23rd, it sounds like I may need some injectable sumitriptan! Also, I had an MRI done without contrast but I watched a podcast and it sounds like I should request an MRA to rule out carotid artery dissection and also request an MRI with contrast of the pituitary gland to rule out any lesions in addition to also requesting a pituitary lab workup. Is that reasonable?

Good Morning, Not sure where to post my "introducing myself" thread so hopefully replying to this post is ok seeing that it originally started as an introduction post as well. I am Kelly. I am a 35 year old female and in April of this year, I got diagnosed with these bastards. My first one was on February 5th of this year and they are still going strong.. I think I had a cycle in 2014 but an ER doctor misdiagnosed them as migraines (Oh how I wish he would have been right). I have had three children naturally and I would choose childbirth over a cluster headache any day of the week. Anyways, last night was by far the worst one yet. I was driving home and all of a sudden my hand looked weird on the steering wheel, I knew what was coming. Luckily, I wasnt far from home because this time, my vision was wonky in both eyes which is new to me. I usually always have problems with the vision in my left eye but never both. I got home, took a shower and mentally prepared myself for the hell that awaited me. My headache came and it was almost like it was seeking revenge of some sort. The pain was awful. Enough background, I am preaching to the cluster headache choir. My question is, where do I start? I have a prescription for oxygen and I am picking that up today but when do I use the oxygen? When my vision gets wacky? Any information would be helpful. I am definitely scared that these have taken a permanent spot in my life and its affecting my life. How do you all cope? Do you work? Is there any light at the end of my tunnel? Thanks in advance, Kelly