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Found 2 results

  1. BustOrNothing

    My first share - My experience

    Hi all, First off, I’d like to say I am so grateful to have a place like this that contains so much info pertaining to cluster headaches. The wealth of knowledge and others’ experiences are priceless and have gotten me through some of the most trying times of my life. I am so sorry that anyone would have to go through this pain, but it helps to know that I am not alone in this struggle. Finding this site some years ago was a godsend. My story, oddly enough, began around the age of 15/16 when I experienced my first EXCRUTIATING (which I feel is putting it mildly) headache. It was the most intense pain I’ve felt in my life, always on the right side of my head, behind my eye/temple/upper jaw region, BUT at the time it would last only a couple of minutes. This went on for about a week or two. I saw my family’s primary care physician who brushed it off as a “fluke.” It wasn’t until I was 21 when I was getting a full cycle of cluster headaches, which at the time I did not have a diagnosis for. I have been to urgent care centers, ERs, general neurologists, and it wasn’t until my last cycle (about 2 years ago) that I went to a headache specialist neurologist who diagnosed me officially with cluster headaches. My headaches were so bad at the time that even though I had an appointment with him in two days, I felt I NEEDED to go to the ER to make sure nothing was wrong, get scans of my head and such. When I finally had my appointment with the headache specialist, he told me that everything that I had been prescribed up until then by doctors, who had no idea about cluster headaches, was garbage. Extra strength acetaminophen, opiates, oral imitrex, etc... he prescribed me nasal spray Sumatriptan and gave me advice on breathing 100% O2 to abort an attack. I am now 27 and my cycles have come almost exactly every 2 years. They start around August and last about a month and a half to two. The headache typically lasts anywhere from 45min-3hrs(at most). The first inkling that I get of a cycle about to begin is a slight pain, almost like a squeezing in my upper teeth/jaw on the right side. It starts off as slight pain, which I now understand to be shadows. It progresses to a full blown cycle, where at the peak I get up to 3-4 headaches in a day. Totally debilitating. 11/10 pain. Feels like my eye is being pressurized to the point of it going to pop. Stabbing pains behind my eye. Feels like so much pressure my skull wants to burst open, so much so that I can feel it in my ear canal. I get the droopy right eyelid, eye gets very red, teary and burns, and stuffy nostril on headache side. I cannot sit still. I have to pace, rub my head, pull my hair. I even told the headache specialist that I’d rather die than experience this forever, which he said is very common with cluster headache sufferers. That was before I knew that this was a cyclical ordeal. The only thing that gets me through these times is the glimmer of hope that this cycle may end, and I can potentially get some headache-free remission time. From my experience these are my known and most common triggers: Alcohol (which I haven’t drank in about a year), red meat (also have been vegetarian for about a year so I don’t eat meat anymore), heavily seasoned foods, any type of smoke (from blowing out a candle, foods cooking on a stove/grill, second hand cigarettes, Mary J), I can toke a little herb off cycle but on cycle it is 100% a trigger for me (also a good test to see if I am still in cycle as it is ending), chocolate, msg (mainly from Chinese takeout), extreme changes in barometric pressure, artificial sweeteners, abnormal sleep schedules. My “go to’s” for aborting a headache include: 100% O2 first and foremost. If I am not at home I do not have a travel tank of oxygen, so at the first feeling that I will get a headache is a BC powder (845mg aspirin, 65mg caffeine) with a coke, which usually, depending on how early I catch it, can keep the pain from reaching a 10 (mostly in the 6-8 range), though sometimes it still gets to a 10 even with the BC. I have nasal spray Sumatriptan, but from what I read, it tends to extend cycles / cause more headaches, so I have yet to use it. I’d rather succumb to the beast than extend my misery by more than need be. Currently I am in a cycle (about 2 weeks and some change in). This one has come earlier than my previous cycles, which are around August typically, so it’s a bit odd. Also, the 3-a-days headaches started after a week of being on this cycle, which is also odd, because the most intense part of my cycle normally starts about 3 to 4 weeks in and is usually a good sign that I have reached the peak and will start heading toward the end of the cycle. As usual, I came back to this forum for motivation to make it through these dark times by just reading through other people’s experiences. Makes me feel less alone because, although my family and friends realize I am miserable, they can never understand the way that anyone here does. I’ve recently read about “busting” since I got an account here. I have been doing my research and may try busting or getting on the D3 in the near future. Hats off to you guys who spent the time and energy in to compiling this wealth of knowledge for everyone. You guys are true heroes. I’m not too sure why I’m sharing this. Maybe because I’ve found some sort of comfort reading through familiar experiences and wanted to give someone else something to read to distract from our ugly reality. I’ve heard that people tend to reach out in times of hardship because there is some solace having someone to share your misery with. I know I have it “easy” compared to some of you with chronic clusters or more frequent cycles / shorter periods of remission. I have the greatest sympathy for anyone experiencing this in any capacity. Much love to you guys. Here’s to wishing for headache free futures for everyone.
  2. Dr. Julie

    50 yr old Newbie

    Greetings from Canada! I am a newly diagnosed/in process CH patient and I'm really happy to have found this forum. Until my first attack 4 years ago I had only ever heard the name cluster headache (via Lisa Kudrow, of all things) but I knew nothing about the pathology. Now I've gotten some info but also many more questions that I think can only be answered from experience - and it sure goes a long way just to talk to people who understand. I've already walked this path having spent 17 years getting a diagnosis for severe REM sleep apnea and my son has a very rare sleep issue himself. I have a whole side of my family I'm not sure I'm even going to tell, I just cannot take on that mountain again right now. I mostly wanted to say 'hi' and the rest is the background of my experience until now, so go ahead and stop here unless you're interested in that too As far as the CH goes, the very smallest silver lining (minuscule even) may be that my first attack 4 years ago was absolutely canonical for CH and I'm not a person to get headaches of any kind to begin with so diagnosis seems a bit easier. Because I didn't know about CH at the time, when I woke up (2:15 am, who's surprised?) and first saw my face I thought I'd had a stroke or aneurysm on my right side. Only because my right nostril was stuffed and eye streaming while the rest of my body still worked did I pause to check differential diagnosis. Of course the only hit I could get for my symptoms was CH. It fit perfectly so I waited it out instead to see if it resolved; two hours later it was over so probably not a stroke. I had another shorter bout two nights later and then...nothing. This was at an incredibly stressful time in my life so I hoped maybe it was a one-off and took a wait and see approach. Two years later it happened again, this time on the left. But again a single headache, only 40 minutes each this time, on three nights spaced over 5 days - not really much of a bout. I still waited on it, I had so much else on my plate. Only a year later next, 2019, this time two attacks a day over 8 days. I told my doctor and got an MRI, no aneurysm, no tumor found. I was doing some other testing so didn't rush to the neurologist yet so we could provide all those results as well - I figured I had a year, right? Hah! December, left side, 1 per day, 5 days, now centered on my temple/cheekbone but only, say, an 8/10 and not the 10/10 of my first bouts. I told my doctor at my next appointment but I was leery that it didn't seem painful enough relative to earlier/was relocated plus other indicators kept possible MS on the table. March, left side, 2 per day, 4 days, again at my temple/cheekbone May (now), right side, 4-5 attacks per day, 90 min, mostly temple/cheekbone again, 9/10, 22 days so far and counting. My doctor's appointment is in a few days but ER doc a few nights ago took my history, did a mini-neuro, checked my records, diagnosed CH and prescribed Zolmitriptan to tide me over until my appt on Tuesday. So that 's where I'm at. Now that I've learned more about CH, some of the symptoms that kept MS possible fit CH even better, so we're thinking it's primary CH and a neurologist will confirm it I guess. Of course I have many questions, most especially the attack escalation for this cycle. Was this a common experience for you early in your CH? What is the likelihood that the cycles will establish themselves at this level? It hasn't ended yet so I have no idea how long it will go, it's already 3X longer than ever before yet I'm only at 3+weeks and I'm know that many suffers here I've read seem to cite 8-10 week long cycles at minimum, so I really don't have it so terrible in that light. On the other hand, if I'm also looking at 4+ daily attacks at 90 minutes each for that many weeks at a time it will pretty completely disable me during that period without effective treatment, so I am naturally hyper focused on your experiences with treatments while at the same time trying not to panic at the idea of my life collapsing. You know how it is. That's all I've got right now, but I look forward to getting to know you all better and participating in the community
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