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Topic: clusters and nose bleeds ! (Read 4182 times) |
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msooner
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clusters and nose bleeds !
« on: Jul 4th, 2005, 12:15am » |
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Hello all.
I am 40 and have had migraines since I was 14. I was quite ill this past year or so and am told that I have Lupus and sjogren's. The nature of my headaches has been changing over the years and recently they have been very different. I saw the ENT specialist who thinks I have some form of vasculitis too, but my rheumatologist says there isn't enough evidence for that yet.
I saw a neurologist and he thinks I may have clusters, but he isn't sure becasue when ever I get these episodes it ends with a nose bleed and I become very hyperaccusis. The ENT who scoped me said the bleeds are coming from the forehead/sinus area, I am on prednisone in anycase for the autoimmune diseases and it does help the headaches, I also am on a calcium channel blocker but I still am getting the pain especially when the cortisone dose is reduced.
The thing is I'm not really sure if these are clusters really, it always starts with severe heat and burning pain inside my left ear, like fire and then the eye on the same side starts to burn and the tearing starts then I get this pain in my eye, sometimes there is drumming in my left ear too, there is no pain in my forehead all this time but when ever there is it is immediately followed with my nose becoming a little runny and then the bleed
follows, I can feel it coming from the forehead area as it suddenly starts to throb and the the throbbing and burning in my nose follows.
Has anyone experienced anything like this ? last week I had a real bad attack at work I'm very good with pain but this one was so bad the fire in my ears was unbareable, and when it was all over I was so confused, answered the phone in a weird way ! and had severe virtigo and couldnt stand right and pressure in my head and was so tired !
Any suggestions anyone ? My neurologist has said he wants me to try imitrex shots but only after I see a pulmonary doctor that Im supossed to see in a couple of weeks for some lung disease I have perhaps due to the autoimmune disease. Also I have been having major issues with my blood pressure since this last year and my cardiologist keeps having to increase my meds. I was thinking maybe when the pain gets real bad my BP gets so high and therefore I get a bleed, however before all this I used to bring up about a cup of blood almost twice a month from where they still do not know ! chest ? GI ?? no clue ! that lasted for over 1.5 year and only stopped when the cortisone and immune suprassants were increased.
Does what I describe sound like clusters to you'll ? The fire in my head is killing me, also I have had a drop in my vision this last month the opthomologist said due to inflammation in the tear glands due to the autimmune diseases, ironically this too was on the same side as the side of the pain.
There was a short while where I started getting the same symtopms in the right side and guess what the bleeds started on that side too. Now I'm back on the left side again.
Any help will be greatly appreciated. Thank you.
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| « Last Edit: Jul 4th, 2005, 12:43am by msooner » |
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BobG
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Re: clusters and nose bleeds !
« Reply #1 on: Jul 4th, 2005, 12:31am » |
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I answered your post over on the getting to know ya section but you've told us more here so I'll answer here also.
Does it sound like clusters? To me, no. I say that based on the 'fire in the ear' feeling and bleeding problem.
I'm not a doctor and can't diagnose. But those symptoms are something I've never heard of being connected with clusters. There is something very serious happening with your health, no doubt about that.
Please see your doctor and get connected with specialists that can help you. Good luck.
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| « Last Edit: Jul 4th, 2005, 12:32am by BobG » |
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burnt-toast
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Re: clusters and nose bleeds !
« Reply #2 on: Jul 4th, 2005, 9:10am » |
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You failed to mention testing being performed - You may want to push your docs. for complete/throrough series of tests that can rule out potential serious physical conditions before accepting a diagnosis of primary headache. (If you haven't endured these tests already).
Best wishes on your search for answers
Tom
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Ree
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Re: clusters and nose bleeds !
« Reply #3 on: Jul 5th, 2005, 1:35pm » |
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Hate to be the bringer of bad tidings.... but it seems to me as if you may have a disorder called Polycythemia Vera.... and it has headache attacks that mimic Cluster.... a friend of mine same age has been diagnosed with it..... look it up see what you think.... [http://www.aafp.org/afp/20040501/2139.html
Good luck and God bless ree
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