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Topic: My Apologies (Read 382 times) |
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NYRenee
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All I can do is B there for U
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My Apologies
« on: Feb 18th, 2004, 1:40pm » |
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I'm truly sorry if anyone thought I was using the cluster website not knowing the diagnosis of my boyfriend...I'm just looking for answers. I say this because I just saw a bunch of topics regarding people who are using this website with non-cluster type symptoms and thought I should clarify.
The balance/dizziness and the feeling of a "bucket of water" sloshing around in his head feeling I believe was from that god awful Methadose that the pain doctor prescribed for him...he was most likely in a drug induced stupor but still in so much pain we had to make another trip to the ER this past Sunday. At that time they did another CSCAN and nothing showed up (to our disappointment....crazy isn't that a person(s) are actually hoping that they find something wrong, so that something can be done?) He is now being tapered off the Methadose and going on Topomax. So far I have seen a dramatic difference in his balance etc.
I think I need to clarify his symptoms for you all....about 1 year ago, he started having excruciating "headaches", after about 3 months of being diagnosed with sinus infections, ear infections, going on antibiotics which of course weren't helping because that wasn't what was wrong a neuro diagnosed him with clusters, he had a MRI and a MRA done at that time. They prescribed anti-seizure meds, pain meds, nasal sprays, migraine meds. and he has had heart attack scares with Imitrex, nothing has really worked, some have "dulled" his pain, but nothing has been a preventative or worked as a pain blocker. He experiences severe, excruciating pain that is always on his right side temple, around the eye, down into the eye socket and gets the classic symptom of his eye and/or nose watering. When they started a year ago the cycle would start around 10:00 pm and go through most of the night, waking him up out of a sound sleep, I don't know if this is common but the "start" time has actually worked around a 24 hour period that is, they were starting at 10:00 pm then at 2:00am, then 4:00 am, so on and so on. Now his "cycle" starts at 7:00pm. Goes to the O2 tank for his treatment, then start to pace back and forth, rocks himself, I get the ice bag (not that that helps much), but I feel like I'm doing something, this morning he told me that he woke up at 3:00 am and finally fell back asleep at 5:30 am. So, the question is are these clusters? There is no family history that he knows of, some websites say they don't seem to run in the family and some do. But 4 different ER doctors at two different hospitals, 2 GP's, 1 pain doctor, and 1 neuro. say they are clusters.
I've been researching this for a year now...and up until last week I've finally decided to ask some questions because were not getting them from the medical community. I want to thank you from the bottom of my heart for being patient with me...and thank you for giving us the knowledge we need to be "armed and dangerous" when we go to these doctor appts. The next appointment will be with a brand new neuro...YEAHHH!We will push him/her to verify ....are these clusters or not?
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thomas
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No apology needed 
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PatFan
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Re: My Apologies
« Reply #2 on: Feb 18th, 2004, 2:12pm » |
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Ditto, no apologies needed. It sounds like CH to me, but I'm no doc.....Have you taken the quiz on the left? Results? Has the O2 worked for him?
A sidenote, lots of folks here have success with Verapamil 240mg or higher usually...I take 480. It is a preventative that can be used successfully if your blood pressure is not too low to begin with. It doesn't work for all, but it has been a godsend for me....
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t_h_b
New Board Hall of Famer
primary chronic since 1999
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Re: My Apologies
« Reply #3 on: Feb 18th, 2004, 6:39pm » |
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You're getting good advice above. Only one thing to add:
One of the distinguishing characteristics of clusters is the pattern of recurring headaches at certain times. It might be helpful for him to keep a headache diary specifying what time they started & stopped and the level of pain as well as any treatments and how well they worked. This might help with the diagnosis.
I hope your boyfriend gets diagnosed and he's luck to have such an ardent supporter.
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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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ClusterChuck
CH.com Alumnus
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The BEAST rises again, and again, and again, and .
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Re: My Apologies
« Reply #4 on: Feb 18th, 2004, 7:53pm » |
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Yup, sounds like Clusters to me! And you are in the right place to ask questions.
on Feb 18th, 2004, 6:39pm, t_h_b wrote:| One of the distinguishing characteristics of clusters is the pattern of recurring headaches at certain times. |
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This is very true, but not exclusive. I do not have them a certain times. Many do, but not all of us do. I agree that it would help in the diagnosis, but would not rule ch out if he does not have them at the same time.
on Feb 18th, 2004, 1:40pm, NYRenee wrote:| When they started a year ago the cycle would start around 10:00 pm and go through most of the night, waking him up out of a sound sleep, I don't know if this is common but the "start" time has actually worked around a 24 hour period that is, they were starting at 10:00 pm then at 2:00am, then 4:00 am, so on and so on. Now his "cycle" starts at 7:00pm. |
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One thing you need to get used to is that the Beast is constantly changing. I have had it for over 25 years, and the symptoms have change a lot over the years!
Good luck, and keep asking questions.
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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Mr. Happy
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If I can do it, it ain't art.
    
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Re: My Apologies
« Reply #5 on: Feb 18th, 2004, 7:59pm » |
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Apology accepted, no huhu.......
Quote:| But 4 different ER doctors at two different hospitals, 2 GP's, 1 pain doctor, and 1 neuro. say they are clusters. |
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Will gladly add a lead pipe to the back of the head..........but seems yer attention outta be gotten by now. The only thing left is proper treatment protocols. Time to pick door #1, #2, or #3. Showcase babes not included.
Luck,
RJ
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May those who don't want any
Have memories of never getting any.
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