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Topic: Tell me they are not clusters, please. (Read 381 times) |
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peking0000
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Tell me they are not clusters, please.
« on: Jan 17th, 2008, 3:06am » |
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In reading the boards, a bit overwhelming at the level of concern and care offered here. It's such a lonely event in this the middle of the night. You seem to want facts so here you go. This is my 3rd season. They last all year but are bearable and less frequent -- not so between November and March. It's almost exactly the same each time: Awakens me one hour after I go to sleep. Intense burning directly in front of my left ear, builds in intensity and becomes unbearable. The best description is an electric like charge. It happens in waves, but does not travel beyond directly in front of my ear. The intensity builds and the true agony lasts 30 mins. Also have teary left eye, full nose, burping, left leg/foot get spastic, but it is not quite involuntary (coping?). I apply direct ice, pace, cry, moan quiet and rhythmic, rock, walk outside in the cold, always upright. Sometimes a second wave comes on and the unbearable waves are about a half hour. Usually can go back to bed within 2 hours (it's now 2:50, got up at 1:00). During the day I get far slighter tingling in the same area, bearable, on and off during the day, does not even need ice. Have had rare mild attacks late afternoon, but they are bearable.
There are two complications: I have had right and left TMJ surgery (only an arthroscopy on the left), but have full range of motion. The second is a baseball shattered my left cheek bone and blew out the orbital floor (I was 15 and am now 53). I am blind in the left eye (no light perception) and the eye itself does not move up and down because the muscles are somehow healed into the bone. The main optic nerve was probably damaged with bone fragments. My eye does not hurt at all during these attacks.
Of course, I want someone to tell me this is something else -- that there are bone fragments that have traveled or that the pain is located in the joint, not in the eye like most cluster sufferers. I do not have the urge to hit my head on the floor or smash it with a telephone. A bullet, perhaps.
MRI/CT scan of brain 3 years ago negative. No insurance at the moment. It is so incredibly painful. I am so happy by day. and deeply distraught by night. So very tired. Sorry this is so long. Will enjoy your comments and questions. Thank you so much.
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Patty
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BarbaraD
CH.com Alumnus
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Hugs to ya
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Re: Tell me they are not clusters, please.
« Reply #1 on: Jan 17th, 2008, 5:58am » |
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Have you tried Melatonin before bedtime? This sometimes helps get thru the REM sleep and helps prevent the night-time hits. It takes a while to get in your system so don't give up after the first night (give it a couple of weeks).
Red Bull energy drink will sometimes abort a hit (if you get to it soon enough) - coffee sometimes helps.
O2 is the "drug" of choice around here for aborting a hit.
Have you seen a doc? That's the first step recommended. Get diagnosed. We're not docs around here. There are prevents out there that are relatively cheap and aborts that are also. (O2 being the least expensive and most effective for most of us - not all but most).
Keep us informed.
Hugs BD
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What don't kill ya, Makes ya stonger!
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Bob_Johnson
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Re: Tell me they are not clusters, please.
« Reply #3 on: Jan 17th, 2008, 9:09am » |
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It's not common for someone in their 50s to start CH for the first time and, given your complex medical history/injuries, I'd hope that you could locate/afford docs to help work out this problem.
If you are in/near a moderate/large city, call your hospital's social worker and ask if they can offer ideas for getting the specialized care you need. This will take time but only treating the symptoms can be a problem if that blocks the diagnosis of a significant, underlying problem.
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Bob Johnson
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Stinger
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I love YaBB 1G - SP1!
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Re: Tell me they are not clusters, please.
« Reply #4 on: Jan 22nd, 2008, 11:31am » |
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My pain has always been a triangle between my right eye, ear and throat. Generally I have 2-4 a day for 4-5 months. Mostly after I go to bed. I did talk to my Doctor this morning , since I moved 300 miles from him when I retired, and he told me that he did not know any doctors in my area who understand CH. I was afraid of that, so it looks like I will drive 300 miles one way for my appointments.
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