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Title: Doctor thinks I have cluster headaches Post by gcabral on Feb 3rd, 2006, 4:11am hi all, this is my first post. i was told yesterday by my ENT doc that he thinks i have cluster headaches. some background: i'm male, 34 and had 2 sinus surgeries last year to help me breath. since the last surgery, i've been feeling like i'm OK/healed..then i get pain in my face, around my eye, cheeck, temple, forehead, etc.. i went it to get my nose looked at thinking that's what it is.. or sinuses.. and they always look OK.. this pain lasts for hours, and usually for a couple months.. then all of a sudden it's gone and i feel pretty good for a month or two.. then it seems to come back. everything i'm reading sounds like it is clusters.. i get the watery eye, one sided, piercing pain in my forehead above my eye, pain in temple.. feels like i've been hit in the side of the head.. the only issue i have with all these symptoms i'm seeing is that my pain, although hurts and is very annoying and makes it hard to concentrate.. it's not really debilitating. i can still manage to function somewhat.. i do get ancy and i do tend to rub my face and head.. but i don't find myself banging my head against a wall or screaming or crying.. are there different levels of severity? am i only getting started? this last year has been a rough one for me.. stress has been at an all time high.. bought my first house, job is busy, relationship issues, diagnosed with high blood pressure, heart rate, etc.. feel like i'm falling apart before 40! anyway... i was happy to be diagnosed.. or almost.. i have a CT scan next week and neuro after that to look at me.. but i really thought i was going nuts.. or maybe i had a tumor or something.. i'm just looking to talk about it and learn. thanks for listening. -greg |
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Title: Re: Doctor thinks I have cluster headaches Post by Bob_Johnson on Feb 3rd, 2006, 4:25am It's true that with some new cases of cluster the symptoms are not always clear and well established. At this stage, the best course is to finish the diagnostic tests you doc has lined up and see where that takes him. You might explore the buttons on the left (cluster traits) and some of the diagnostic leads on the OUCH site. Keep us informed about outcomes of your tests and let's see if the picture becomes clearer. |
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Title: Re: Doctor thinks I have cluster headaches Post by AussieBrian on Feb 3rd, 2006, 4:43am G'day Greg, And while you keep asking questions you'll get ever closer to an answer. We're not doctors here. We don't diagnose and we don't prescribe, but we can certainly assist in pointing you in certain directions. For instance, have you tried the Cluster Quiz over on the left? It's not difinitive, but it's a great start. Don't worry that your symptoms don't exactly match the common sufferer as we've yet to find a single defining element (other than pain). Also consider that many other types of headache mimic CH, so correct diagnosis is vitally important. Keep searching, friend, and keep asking questions. We're ever here to help. Regards from the team, Brian Down Under. |
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Title: Re: Doctor thinks I have cluster headaches Post by Beastfodder on Feb 3rd, 2006, 5:03am Definitely maybe. Fours legs, waggy tail and cold wet nose usually means it's a dog. Lots of reading - there's some great ways to manage CH nowadays. Make sure you're comfortable with any meds prescribed for CH and the old blood pressure tho'. Good luck |
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Title: Re: Doctor thinks I have cluster headaches Post by E-Double on Feb 3rd, 2006, 6:13am Time will tell my friend! Sometimes an initial cycle can be weird. There will be some devestating pain and then possibly not. If Clusters they will come back and chances are they will be DEBILITATING. However, you learn to cope and live life just like anyone else only you may have a few glitches. Time is what will dictate. If they return it is likely Ch or a variant of. Regardless of what it is, I wish you well. Try to get to a headache specialist. Track your HA with a journal or chart to look for patterns. Stick around, learn and keep us updated. Eric |
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Title: Re: Doctor thinks I have cluster headaches Post by Chillrmn1 on Feb 3rd, 2006, 6:22am greg, i can relate........an ent suspected i was experiencing clusters and a neurologist confirmed it, and yes there are different severities of attacks......see 'the kip scale" button to the left of the screen for more info. important thing is to be diagnosed and then treatment can be decided. bob |
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Title: Re: Doctor thinks I have cluster headaches Post by BarbaraD on Feb 3rd, 2006, 1:17pm Well, you certainly came to the right place. CH is different for all of us. Some of us bang our heads and some of us don't. (Me, I'm a head banger and don't touch me or you'll get hurt person when I'm getting hit. :-/) Some like to be held -ohoooo, I couldn't stand that! We're all different and we all handle CH differently. As you said, the only thing we really have in common is the pain. That's what formed this "family". We're all looking for a way to STOP this pain. Get diagnosed by your neuro and get something to help you. Go to him/her armed with info on CH (buttons on left); ask questions and GET answers. There are ways to handle the pain of CH and you deserve to get in on it. As to handling the day to day of CH -- we all learn to cope with it. That's how we survive.... Hugs BD |
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Title: Re: Doctor thinks I have cluster headaches Post by Ghost on Feb 3rd, 2006, 3:38pm I know I am about to get smacked around for this but see if this helps, Instead of a response scale This is a Pain scale I use to measure levels and some helpful hints too. CLUSTER HEADACHES PAIN SCALE Pain level 0 No pain, life is beautiful Pain level 1 Very minor, Short lived ache, very slight pressure. Kind of like leaning against a sharp edge of a wall on your temple. Pain level 2 Low pain level. Similar to wearing a very tight hat while leaning against a sharp edge of a wall on your temple. Pain level 3 Start at Level 2 and add, Almost a pulsing sensation, but drawn out a little. Just above a dull warm pain, but not a real distraction. Still able to function, but definitely a problem. Pain level 4 Eye may water some here and above. Sharp but not really a burning sensation, but defiantly warm. Real desire to apply pressure to area. Pain level 5 Very sharp pain, almost burning sensation, but still able to function at a very low level. Absolute need to hold area, also some rocking. Pain level 6 Very sharp and definite burning, rocking necessary, pressure like heated fork pushing against temple/eye area. Pain level 7 Repeat Sharp for rest, Burning more intense, similar to the heated fork or skewer actually penetrating into the skull but not through it, possible spreading to cheek and jaw area like a mild to bad toothache. Pain level 8 Pain now at a level of a red hot poker replaced by the heated fork or skewer, burrowing from temple to eye. Possible tightness and burning in the jaw area, similar to a severe toothache. Pain level 9 Similar to Level 8 but pain now spreading to cheek and beyond also sensation of intense pressure from inside trying to push out. Very sharp and Hot Feeling. Pain level 10 Major pain, screaming, head banging, ER trip. Depressed. Suicidal. From a Level 9 you now will experience the feeling you scull is being split open and salt being poured into it. Nothing to compare to this level. Can result in Blackouts. Dangerously intense. Helpful Hints At each level see prior and add to where you are. Most attacks last from 15 min. to 3+ hours. O2 is a valid and preferred treatment at most levels of pain to end(abort) a Cluster Attack sooner. Usually administered at 10-15 lpm with a Non re-breather mask. For most it is also necessary to use Imitrex injection. Most oral meds and inhaled meds will not affect the attack you are in now, but if taken prior to attack may result in some relief. The Levels listed here are a guideline, taken from my own experiences and from information gathered from others. For most the attack ramps up rapidly and subsides almost as fast, but it may take several hours to recover from it. Very energy draining. Caffeine may also assist in aborting an attack. Most Cluster Headache sufferers are misdiagnosed for many years, some with sinus headaches, tension headaches, migraines, and even toothaches/infections. Cluster headaches can and often are accompanied by other types of headaches, Sinus, Stress, Migraine, and others making it hard to detect and/or diagnose. Cluster Headaches are real and should never be considered a minor inconvenience, The cause is still being debated but there is no known cure as of yet. Remember you are the one suffering, dont let others tell you how much it doesnt hurt! Shadow; some of the symptoms but without a measurable amount of pain(pressure). Twinge; Short burst of pain usually to fast to produce side effects. Episodic; Episodes of Cluster headaches that are under 1 year in length, or with 30 days or more during a calendar year of being Pain Free. Chronic; Episodes of Cluster headaches that are over 1 year in length, or with less than 30 days during a calendar year of being Pain Free. There are various methods and treatments, both conventional and non-conventional. Overall it seems Oxygen at a higher rate while using a Non re-breather mask seems to be the most effective. Some people experience Cluster attacks as a result of a trigger ie. alcohol, smoking, foods, ect Never let a doctor, or other medical professional dismiss it as psychosomatic, or imagined pain. |
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Title: Re: Doctor thinks I have cluster headaches Post by Guiseppi on Feb 3rd, 2006, 3:46pm Ghost that was almost perfect. You described my HA's to a T right up to the ten. My 10's are a nine with the ice pick jabbing behind my eye ball. Otherwise that was me talking! Nice "verbal illustration." Guiseppi |
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Title: Re: Doctor thinks I have cluster headaches Post by gcabral on Feb 4th, 2006, 3:45pm thanks for the advice everyone. i go in tuesday for my CT then followup in a week with ENT.. then neuro. i'd say i'm a 4-5 on that scale. eye always waters and twitches, pain in my forehead above eye and i'm always rubbing my temple. thanks again -g |
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Title: Re: Doctor thinks I have cluster headaches Post by MJ on Feb 4th, 2006, 4:31pm Good luck with the tests Cabral. MJ Nice scale ghost |
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Title: Re: Doctor thinks I have cluster headaches Post by burnt-toast on Feb 5th, 2006, 8:51am As others have already pointed out CH pain comes in all shapes and sizes. The nightmare likes to mix things up and most find themselves eventually dealing with pain up and down the chart when in cycle. Follow through the testing to rule out physical causes and begin maintaing a headache journal to track your symptoms, the effects of treatments and cycle characteristics. I hope the end result isn't something serious or CH. During the process this will be a great place for information and/or support. Best Wishes on your journey. Tom |
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