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Topic: related disease? (Read 404 times) |
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bobbiA
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related disease?
« on: Jan 22nd, 2004, 2:52am » |
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hi everyone...im new here..and a new survivor (most of the time) of CH's...finding your site made me cry with relief that i wasnt losing my mind...i really wanted to just die...but im coping much better now thanks to alot of information ive gained...
what i would like to know is...is there anyone here that has these damned things that also has SLE (lupus)..the first doc i saw thought they were lupus related and upped my prednisone (which im dependant on anyway) and gave me strong pain killers ...of course that didnt work..
i started keeping track of frequency and stuff and went to my rheumatologist...one hit me in his waiting room...he promtly told me what was wrong and shot me with imitrex which made me cry with relief...
i am still combating pain with the imitrex tabs but think i am going to have to go to an inhaler(?) for those midddle of the night attacks...
im off the subject...
is there anyone here that is also a survivor of lupus in conjunction with the CH's?
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Woobie
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Re: related disease?
« Reply #1 on: Jan 22nd, 2004, 2:56am » |
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My mom has lupus - and never had a frikkin headache in her life.
(lucky lucky lucky)
I do not have CH... husband does.. and has no auto=immune disorders.
I have RA - no CH, but I do have migraines... LOL.
I am no help either......
HI and welcome anyhow!  Stick around a while....
tina 
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t_h_b
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Re: related disease?
« Reply #2 on: Jan 22nd, 2004, 2:58am » |
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No SLE here but the Imitrex tabs are probably too slow to take effect--the inhaler or even shots would probably work better. If you do the shots you can control the dose--I get five out of two vials and might could even get more.
Two cheers for your rheumatologist on the good diagnosis. What was he doing with Imitrex hanging about?
Seems like there might have been some mention here of SLE before--try the search function and also try google or dogpile advanced search to find mentions of SLE and CH together.
Good luck with the CH and the lupus, too.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Woobie
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Re: related disease?
« Reply #3 on: Jan 22nd, 2004, 2:59am » |
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BTW - isn't it amazing that a rheumatologist knew what a cluster is??
We're having a hard time finding a neurologist that knows anything about them..
neato!!!!
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| « Last Edit: Jan 22nd, 2004, 3:00am by Woobie » |
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Woobie
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Re: related disease?
« Reply #4 on: Jan 22nd, 2004, 3:03am » |
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on Jan 22nd, 2004, 2:58am, t_h_b wrote:
Two cheers for your rheumatologist on the good diagnosis. What was he doing with Imitrex hanging about?
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My rheumatologist has imitrex, because a lot of people with RA (rheumatoid arthritis) get migraines... and someone here mentioned arthritic migraines - whatever those are. Not uncommon - cool that he recognized it tho. Very cool.
Maybe you're all going to the WRONG kind of Dr. You all should be going to rheumatologists.....
just trying to help!
LOL
Tina
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bobbiA
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Re: related disease?
« Reply #5 on: Jan 22nd, 2004, 3:47am » |
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thank you ALL so much! my rheumatologist had imitrex in his office for patients to TRY its a sample pack but it got me through till the Rx was filled...
he deals mostly in lupus patients and alot of migraines are lupus related but quite a few come from prednisome connection too (as alot of you know about rebounds and tapers and too much prednisone) its especially bad with some of us who are prednisone dependant...it SUCKS...anyway thats why he had imitrex there...
he knew about cluster headaches because he said that alot of his lupus headache people tend to go through a period of cluster headaches at one point or another...for many different reasons...and he also said that ALOT of neurologist order a million needless tests without asking the right questions of the sufferer..if they would ASK they would know what the headache is..it seems that some just dont ask the right questions...it all boils down to communication! iagree..
thank GOD for my rheumatologist...but it sucked having to go through my PCP to get that dang referral renewed...now i just call the Rheumatologist and HE calls my PCP...i love this man! lol
thank you guys for taking me in...as i sit here i can feel my ear start to burn again and im just gonna cry if it attacks me again so soon...i cant even take another dose yet..so pain pill here i come...
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Timmi
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Re: related disease?
« Reply #6 on: Jan 22nd, 2004, 5:52am » |
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Hope it passes you by quickly.I discovered this site recently.When I'm hit with one I take comfort in knowing there are others.For some reason it helps.
Hang in there and try not to over do it with the medicine.These things laugh at pain pills like codine or lortab.
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it's got you now.just lie there and be it's bitch untill it leaves.
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RichardN
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Re: related disease?
« Reply #7 on: Jan 22nd, 2004, 8:21am » |
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Verapamil and 02 worked for me. When this site gave me a "name for the pain" and suggestions on what to do about it, Imetrex of course was right up there on the top of the list.........BUT.....you have to be very careful with imetrex if you have arterie blockage (Idid/do) high blood pressure, etc..
PFDAN
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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RichardN
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Re: related disease?
« Reply #8 on: Jan 22nd, 2004, 8:28am » |
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Forgot to ask. Do you have blistering with the lupus? If so, send me a private message- - - there's help available now your doctor might not be aware of. FDA approved finally. 
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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thomas
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Welcome aboard Sorry to hear that you've got ch AND lupus..........  Hope that you get some relief soon.
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aprilbee
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Re: related disease?
« Reply #10 on: Jan 22nd, 2004, 9:17am » |
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It is so great to hear a doctor that KNOWS what he is doing! 
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don
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Quote:i started keeping track of frequency and stuff and went to my rheumatologist...one hit me in his waiting room...he promtly told me what was wrong and shot me with imitrex which made me cry with relief...
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That is amazing. Here we are trying to educate neurologists and a rheumatologist is CH educated.
Kudos to the rheumos !
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Callico
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Re: related disease?
« Reply #12 on: Jan 22nd, 2004, 11:29am » |
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Welcome aboard! Can't help with the Lupus. Don't know of any connections, but knowing how unusual CH is and the way it seems to change from attack to attack it would not surprise me if there is some sort of a connection to the immune system, although I would be more inclined to think it more likely that the immune system is affected by whatever it is that is causing CH.  I confuse myself!
Have your Dr give you a scrip for O2. It is effective for many of us and it has no side effects. If yoiu are on pred already you don't need any more sided effects.
There is a lot of good reading here that can help you tremendously, so pour yourself a big cup of coffe and dig in.
Feel free to ask questions. You will get some wise answers and some wise-ass answers, but you will get answers!
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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floridian
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A few articles suggest that multiple sclerosis can sometimes hit the trigeminal nerve and cause cluster headaches, but most people with clusters don't have MS, and most MS sufferers don't get clusters. Lupus and other autoimmune diseases involve wide spread inflammation, which could make the nerves more sensitive. Clusterheads do tend to have an immune system that is hyperactive in some ways (high levels of IgE, IL-1 beta, TNF-alpha) and these factors contribute to cluster headaches. IL-1 and TNF increase the production of nitric oxide, which is associated with swollen blood vessels and the pain of cluster headache.
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| « Last Edit: Jan 22nd, 2004, 12:15pm by floridian » |
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Tiannia
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Re: related disease?
« Reply #14 on: Jan 22nd, 2004, 12:53pm » |
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Hiya Sweetie - Sorry that you had to find us but glad that you did.
My history -
Mother has MS - and Migraines
I have Rheumatoid Arthritis and Hoshimodos Hypothyroid both are auto immune diseases. I was tested quite a few times for lupis but never came back positive. But my white blood cells never seem to be normal. According to my husband, that should not shock anyone, as I am far from normal on any accounts.
I never would have connected these with clusters though...
Tiannia
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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jonny
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Welcome aboard, Bobbi
.........................jonny
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Kirk
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Re: related disease?
« Reply #16 on: Jan 22nd, 2004, 5:16pm » |
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Sorry to hear you have CH.
Immune deficiencies are definetly not a problem with me. Other than a few parts that have been broken through brute force and CH. I am disgustingly healthy for a 25 year old and I'm 54.
I'm even immune from Microsoft and Mac..
Welcome to the Maelstrom, I hope you go into remission as fast as it came on and stay that way.
Hang in there we're pulling for ya.
TTFN 
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bobbiA
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i will NOT be beaten!
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Re: related disease?
« Reply #17 on: Jan 22nd, 2004, 6:08pm » |
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good afternoon already? lordy...
richard...i do have blistering from the lupus...arms and across face and upper torso...give me a shout in e-mail? bobbianderson@msn.com
to the rest of you...hugs hugs vibes and more hugs...
i found an interesting distractor last night...ice cubes on the feet! my friend is studying some sort of specialized massage therapy that centers around the feet..she told me to TRY it..since i have to be able to do something that distracts me i cant just sit with ice cubes..so i broke ice cubes (crushed ice would be perfect) and stuck them in a dish pan and put my feet on them and dug in...just the bottoms of the feet though.....the ice gives you that 'alternate pain' and the cold actually does work if you can stand it and sit still long enough for it...when ya get the itch to move around dig your feet into that ice...
anyway...give it a try..
gosh im thrilled to be here and i love all of ya already! this has been a scary spot for me because the stress of the CH's has been really settin gmy lupus into flare stage..so im trying to control both at the same time and end up controlling NOTHING (rarely even my temper) lol but you all have given me MUCh to discuss with my doc and im sure he will be thrilled that ive done my own research too..he loves it when patients want to learn not just be treated...
since im recovering from last nights bout im going to go try to take a nap while there is peace so i will talk to ya all later tonight!
hugs prayers and peace
bobbi
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