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Topic: Could it be??? (Read 278 times) |
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wendyjo
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Could it be???
« on: Jul 12th, 2004, 4:44pm » |
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Hi! I'm new here....Found this place after doing research on cluster headaches while doing more research on migraine headaches.
This is why I ask....10 years ago this Sept 23 I suffered the most frightening, awful headache I had ever had (actually called my mother and apologized for dying three weeks into college). Since then I have suffered headaches/migraines--multiple kinds of headaches. At least twice a semester I was dosed up on Fiorinal by the campus infirmary twice a semester while exhausting the OTCs possible without success until I graduated. Once I graduated and had health insurance, went to the doctor. Since then have been on triptans (Maxalt, Amerge, didn't even bother with Imitrex becuz pills don't work fast enough--onset is less than 10 minutes and injections not covered under insurance), ergot-based medications, anti-inflammatories, anti-arthitic medications, beta-blockers (three different types), depakote, multiple anti-depressants (zomig, prozac, nortriptyline). Currently on my second neuro and taking Topomax--yea...what fun that's been, pins+needle hands and face, lotsa weight loss when I don't have weight to lose, and not a drop of help with the headaches. All MRIs, MRAs, EEGs and bloodwork have come back "normal".
That's the meds. Here's the daily headpain cycle. Four to five severe "headaches" a day (pain scale 8.5-9/10), about the same time--6am to 8am I can't get out of bed (thank god I don't have to be to work until 9:30); 10:15/10:30-12:30 or so; 2:30-4:00 or so; 5:30-7:30 or so; 10:00-12:30ish--these are generally the times, they don't always last that long; most start same way, throbbing pain in both temple area and a weird, warm feeling in left ear (like when I was kid and my mom just put ear infection drops in my ear) and it morphs after about 5-7 minutes to throbbing on left only; left eye feels/looks droopy and glassy, often tears; left ear gets flushed. Lotsa little headaches in between caused by sunlight, fluorescent lighting, heat, humidity, etc--at least those I know about. THEN, every six-seven weeks I have the scariest, most horrible headache in the world. I wake up and within an hour I can tell you that I will have it and there's nothing I can do to stop it from happening. The pain pulsates from the center of my brain outward and is aggravated by movement but I can't just sit. I can't stand the dark, can't stand the light. Sound is worse, television difficult so I tend to read with headphones on--I can control the environment then. I just cry and cry and cry and cry and my poor husband doesn't know what to do for me. Pain scale of the first day is 200/10. Second day is 25/10. Third day I'm starting to feel human again 9.5-10/10. Then I have maybe 2-3 days of "small headaches" 6-7/10 pain, which seems like a day in the park. Then the cycle starts all over again. Sometimes I'm lucky and go three months and don't have one of the big nasty scary ones. But then the next one is a real whopper. 
Why do I ask if this could be a cluster headache? My last neuro told me I was making up the time table because there was no biological pattern that ran 6-7 weeks. But when I was reading your website and other cluster headache literature and that's what it said. And when I was at the my new neuro a month ago, when I said that the big, scary nasty occurred about every seven weeks give or take a week, he just kinda looked at me, especially when I described it. I'm not looking to self diagnose but just more info on what it feels like or if I'm crazy.
Anything will help.
Thanks!!!
WenJo 
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don
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Can you lie down or sit still when you have an attack?
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marfanoidus
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Re: Could it be???
« Reply #2 on: Jul 12th, 2004, 5:30pm » |
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I know its coming, so I'll go ahead and ask: have you tried oxygen? It works for a lot of us.
I'd give up sex and fried chicken for life if I had to just to make sure I had oxygen on hand during a CH cycle. 
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Sometimes "What doesn't kill you" makes you wish it had.
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Superpain
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GOT O2!?
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Re: Could it be???
« Reply #3 on: Jul 12th, 2004, 6:47pm » |
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Sounds like you have some serious headaches.
But when having a cluster you MUST get out of bed. There's no such thing as being able to lay down or stay in bed.
Quote:| THEN, every six-seven weeks I have the scariest, most horrible headache in the world. I wake up and within an hour I can tell you that I will have it and there's nothing I can do to stop it from happening. The pain pulsates from the center of my brain outward and is aggravated by movement but I can't just sit. I can't stand the dark, can't stand the light. Sound is worse, television difficult so I tend to read with headphones on--I can control the environment then. |
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A cluster headache does not take an hour to recognize. You know it immediately. I can only speak for myself, but I'm pretty sure everyone would agree that reading is impossible when getting hit with a ch. Movement does not aggravate a cluster. In fact the typical cluster headache will cause you to move about in all kinds of strange ways, wether its writhing on the floor, banging your head on the wall, pacing, etc...
Some of your symptoms do sound like cluster's but you also list several contradictions. Perhaps it's because you have migraines and/or some other headaches going on simultaneously. You may also have cluster's I guess... Kinda hard to tell by the contradictions in your symptoms.
But I agree about the Oxygen.... it's effective for a few kinds of headaches and there's a good chance you can find relief with it.
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Chris
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Kris_in_SJ
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Re: Could it be???
« Reply #4 on: Jul 12th, 2004, 8:12pm » |
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Chris is right - it's a little hard to tell what's going on based on how you describe your symptoms. The droopy, watering eye fits, but the rest is a little confusing. You just might have several types of HA happening to you. I'M SORRY!
The moving around thing is also important. Like you, I can't stand to lay down or sit down, but reading with headphones on is definitely out! Personally, my preference is walking around and pulling my hair on the opposite side of the HA - serves somewhat as a distraction from the agony on the other side (somewhat difficult too, since my hair is only about 2 inches long).
I'd also suggest O2 - or, if you now have insurance, Imitrex injects. Pills are generally useless with clusters because the onset is so sudden and the pain peaks so rapidly. I'd also recommend continuing to keep your HA journal. Write it all down and take it with you next time you go to the doc. Write down the times, duration, what you were doing at the time, what helped relieve (if anything), etc. My jounal has been invaluable to both me and my doc in finding the best treatment during cycles.
Good luck - Hugs and good wishes,
Kris
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Prense
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Re: Could it be???
« Reply #5 on: Jul 12th, 2004, 8:32pm » |
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on Jul 12th, 2004, 6:47pm, Superpain wrote:| I can only speak for myself, but I'm pretty sure everyone would agree that reading is impossible when getting hit with a ch. |
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I agree with your post Chris, but you would be surprised at what folks do to cope with CH. Reading for comprehension, I'd say is near impossible at higher kip levels. Reading to distract, possible. Some folks here have claimed to do activities that require a degree of concentration to distract from the attack. For example, I will perform mathmatical computations repeatedly in my head during a hit. I can do that fairly accurately till about a kip 7, and yes, it does help with coping some.
Chris
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floridian
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Quote:| My last neuro told me I was making up the time table because there was no biological pattern that ran 6-7 weeks. |
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It's hard to say what type of headaches you have.
The headaches caused by bright light/fluorescent light point to migraine or something other than clusters. My cluster pain feels more like behind the eye - not the center of the brain. If both your temples are where it starts, it may not be a cluster. Clusters are strongly one sided. I sometimes have the pain spread to the jaw or temple, but that is usually well into the attack, not at the begining. I don't know of anyone who gets clusters every 7 weeks - more common would be 7 weeks straight the same time every year. Also, I cannot read with a cluster - the affected eye is unable to focus very well for more than a second or so. I listen to music or put the TV on. I alternate between pacing and curling in the fetal position.
Maybe you should get a new neuro, if this one doesn't believe you when you present your symptoms. You might keep a log of your headaches, diet, and other life activities to help figure things out.
Hope you figure it out and can get an effective treatment. I'll consider you an honorary clusterhead even if the headaches turn out to be something else.
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Prense
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Re: Could it be???
« Reply #7 on: Jul 13th, 2004, 10:33am » |
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on Jul 13th, 2004, 10:16am, floridian wrote:| Also, I cannot read with a cluster - the affected eye is unable to focus very well for more than a second or so. |
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My "affected eye" is covered with a towel. If I am going to look at anything, it is only with my other eye.
Chris
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E-Double
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Re: Could it be???
« Reply #8 on: Jul 13th, 2004, 1:42pm » |
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Quote:| My last neuro told me I was making up the time table because there was no biological pattern that ran 6-7 weeks. |
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If you read through the millions of posts there are pleanty of people who seem to be "all over the place"
I've had these bad boys for almost 10 years but it wasn't until this current cycle that the started hitting me during the day and at no particuliar time. (I've got a wicked spread sheet broken down into 15 minute intervals) Kinda helped the doctors say "WOW your all over the place"
Point is they're still clusters and fuck your doctor for even suggesting that you made it up. How dare he! Unethical prick!! Is he a psychologist or a psychiatrist?? If not FUCK HIM!!
An as far as the light thing.... You could possible get migraines on top of clusters. Then again I am no doctor of medicine.
Be well,
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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UN_SOLVED
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Re: Could it be???
« Reply #9 on: Jul 18th, 2004, 10:03pm » |
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on Jul 12th, 2004, 4:44pm, wendyjo wrote:| Four to five severe "headaches" a day (pain scale 8.5-9/10)...... Pain scale of the first day is 200/10. Second day is 25/10. Third day I'm starting to feel human again 9.5-10/10. Then I have maybe 2-3 days of "small headaches" 6-7/10 pain |
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While at CH.com ...Please stick to the KIP scale. There is nothing more painful than a KIP 10.
PS...I'm not convinced you have clusters. Like the others have said ... you'll know if it's a cluster within minutes. You CANNOT sit still. You would NOT be reading anything let alone be wearing headphones.
Best wishes,
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