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Mar1
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New & possible cluster headaches...
« on: May 1st, 2006, 2:20pm » |
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Hey everyone, new here and could use some help/advice/anything. I've managed to completely stump my Dr. as to what's going on so right now we're just kind of making it up as we go along and hoping something works. Basically, I've been having headaches for the last two weeks, every day. They weren't too bad at first, I could function, but they were definately there. I thought it may have been the Nasonex I was taking, so I stopped taking it about a week and a half ago. From then, it just got worse. So I went to see my Dr. today and explained to him what was going on and asked if it may be a sinus infection since I've dealt with those pretty often recently (had surgery 2 months ago to correct it). He looked and said that it wasn't a sinus infection as they were 100% clear and everything looked fine. He sat and listend to my symptoms and asked me a few questions and he's made a tentative diagnosis of cluster headache syndrome, but he's not sure as my symptoms don't line up completely with cluster headaches, but they also don't line up fully with other types of headaches. Basically, the pain starts just above my temple and goes down the side of my head, but also down my cheek. The pain's on both sides, but definately more prominent on the right. The pain does have spikes, but after the spikes, there's still steady constant pain all of the time. My Dr. checked for TMJ at first, but also checked and apparently the veins in my temples were pounding pretty severely. I've also become slightly sensitive to light, it's not too bad, but it's there. I don't have any congestion associated with this, but my right eye has been tearing up every so often, usually in the evening when I'm laying down about to sleep.
Basically, all we know is that this isn't normal for me. I rarely would get headaches, and when I did, they were always gone within the hour without me doing a thing. Now, it's all I can do to just make it through the day. I'm just trying to get ideas as to what this could be since my Dr. is about as perplexed as I am about this. I feel like I'm losing it since I know this pain is here, but my symptoms aren't lining up with anything and my Dr. just said Cluster Headache Syndrome just to put a name to it. I've got a prescription now but he wants me to call him on Thursday and see if that's even working, since we can't even get a complete diagnosis right now, it's just all trial and error. So if any one has any suggestions on where to look for some help or any similar experiences, I would appreciate it.
~Mar~
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Richr8
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Re: New & possible cluster headaches...
« Reply #1 on: May 1st, 2006, 2:34pm » |
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Welcoem MAr,
I hope you don't have Ch, but take the quiz on the left panel and let us know how it turns out. If not, there are some HA experts on this site who might be able to help you get an accurate diagnosis.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Charlotte
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Re: New & possible cluster headaches...
« Reply #2 on: May 1st, 2006, 3:16pm » |
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What is your prescription for? Is it an abortive like Imitrix or a preventaive Verapamil?
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Mar1
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Re: New & possible cluster headaches...
« Reply #3 on: May 1st, 2006, 3:36pm » |
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Yea, that's the crazy thing. He's got me on Soma, which I could understand if these were tension headaches, which they definately aren't that. I've had tension headaches before and this definately isn't a tension headache, but hey if he wants to try, I'll let him. He also gave me a prescription for some Darvocet for when the Soma doesn't work. I have to call on Thursday and let him know if it's working and if not, he'll switch me over to Inderal and see if that helps. If that doesn't work, I have no idea what we'll be trying. Honestly, I think he's trying to buy some time until he figures out what this may be and what he needs to use to treat it 
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| « Last Edit: May 1st, 2006, 3:40pm by Mar1 » |
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Charlotte
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Re: New & possible cluster headaches...
« Reply #4 on: May 1st, 2006, 3:53pm » |
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If it is clusters, the pain medicine probably won't help much.
Have you ever tried triptins? They are used for migraine and for ch. They don't work for everyone and people w/heart trouble shouldn't use them.
So does the Soma dull it down enough? Do you use it around the clock or when you get the first twinges in your cheek, temple, and side of head?
Good luck.
Charlotte
Charlotte
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Mar1
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Re: New & possible cluster headaches...
« Reply #5 on: May 1st, 2006, 4:10pm » |
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Never heard of Triptins before, what is it exactly?
I don't even know if the Soma will work or not yet. I just got the prescription this morning and can't fill it until I get off work today. He's got me on a schedule with the Soma, take half a tablet in the morning, half in the evening. I can take a third during the day if necessary. I'm already pretty sure the Darvocet won't do much, whether it's clusters or otherwise. I took quite a bit of it when I was dealing with sinus infections and it didn't do anything then, so I can't imagine it doing much now.
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lionsound
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Re: New & possible cluster headaches...
« Reply #7 on: May 2nd, 2006, 5:31am » |
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Hi Mar,
I'm sorry you are in so much pain.
Are you seeing a neurologist? or better yet a Headache speciaist?
It seems to me that you need a more secure diagnosos of whatever is going on...especially if this isn't normal for you. Ask your doctor for a referral.
let us know how you make out.
Be well and Pain free,
lionsound
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Mar1
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Re: New & possible cluster headaches...
« Reply #8 on: May 2nd, 2006, 7:39am » |
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Thanks for the info everyone, I'll check it out. I haven't seen anyone but my regular Dr. yet. Unfortunately, my health insurance is an HMO and they make me suffer a bit before I get a specialist.
Just an update, the Soma didn't work at all. Had a headache all night, but managed to get some sleep until about midnight when it woke me up.
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Bob_Johnson
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Re: New & possible cluster headaches...
« Reply #9 on: May 2nd, 2006, 10:48am » |
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See my message in, "new here", from "craig497", in this section.
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Bob Johnson
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Dave
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Re: New & possible cluster headaches...
« Reply #10 on: May 20th, 2006, 9:58pm » |
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I'd recommend seeing a neurologist before accepting a diagnosis of cluster headaches. Most internists don't know much about cluster headache syndrome. But a neurologist should be able to tell you.
Most CH sufferers describe their pain as purely one-sided and feels like it is behind the eye. Attacks typically last about an hour, and usually, but not always, the pain goes away until the next attack. Night time is the most common time for attacks.
Your description of your headaches might make one wonder whether you should seek a second opinion.
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chewy
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Re: New & possible cluster headaches...
« Reply #11 on: May 21st, 2006, 7:46am » |
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Beastfodder
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Re: New & possible cluster headaches...
« Reply #12 on: May 23rd, 2006, 10:29am » |
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Mar you definitely need another medical opinion.
Use all the stuff here to go through and discuss with your Doc - I'm not sure about CH because of x, If it's CH why am I on Soma, that kind of thing, even - have you treated CH before? and the obvious - If not do you know a neurolgist who can?
Life will get a lot better knowing what you're battling against.
All the best
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O2 and clusterbusters - naturally
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Katherinecm
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Re: New & possible cluster headaches...
« Reply #13 on: May 24th, 2006, 7:42pm » |
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It is possible to have two types of headaches at the same time. Your pain sounds somewhat similar to what I have, which is an intractable migraine AND cluster headaches. Do try to get into a neuro or headache specialist to get a more accurate diagnosis.
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http://www.squidoo.com/clusterheadaches/
"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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