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Phia
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Am I alone in these symptoms?
« on: Feb 28th, 2005, 1:27am » |
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I've been diagnosed with CHs. I share the same symptoms that many of you have written about and others that I haven't seen mentioned. I'm going to a new neurologist tomorrow and need to know if any one else has experienced these symptoms.
1. I sleep less than 4 hours/night
2. I get severe "ice cream headaches" (like the "brain freeze" you get eating or drinking a frozen drink or desert too fast). The difference is my headaches are much more severe and don't go away quickly.
3. My skin is super-sensitive - especially above my right eye at the temple whether I have a headache or not.
4. My eye droops just before the headache hits and stays drooped until it's over.
5. Unlike many of you, I don't like to move around when it's bad. And crying just makes it worse.
6. When I lay down, it gets instantly worse. (I sleep propped up in a sitting position.)
7. I've never wanted to bang my head against the wall.
8. During the chronic cycle, my body aches like I'm coming down with the flu or overworked my muscles.
Is there anyone out there that's experiencing any of this, or are these things possible unrelated.
By the way, I've been silent on this board. It's hard to think with the headaches and I have trouble expressing myself. But I want you to know that I've recieved a lot from you and I appreciate the fact that you're always there. You've all been in my prayers - including the people who love you and feel so helpless.
- Phia
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BobG
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Re: Am I alone in these symptoms?
« Reply #1 on: Feb 28th, 2005, 3:17am » |
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on Feb 28th, 2005, 1:27am, Phia wrote:I've been diagnosed with CHs. I share the same symptoms that many of you have written about and others that I haven't seen mentioned. I'm going to a new neurologist tomorrow and need to know if any one else has experienced these symptoms.
1. I sleep less than 4 hours/night Have you always slept 4 hours a night? Or just since you started having clusters? Some people need 9 hours sleep/night, some much less. My normal sleep is 6-7 hours/night.
2. I get severe "ice cream headaches" (like the "brain freeze" you get eating or drinking a frozen drink or desert too fast). The difference is my headaches are much more severe and don't go away quickly. That's kinda like what a cluster attack feels like. I often use the 'brain freeze' anology to explain what I feel, only X10 in the pain level and lasting much, much longer.
3. My skin is super-sensitive - especially above my right eye at the temple whether I have a headache or not. I have never experienced that but we are all different.
4. My eye droops just before the headache hits and stays drooped until it's over. That is very common among clusterheads.
5. Unlike many of you, I don't like to move around when it's bad. Some do, some don't. I must be up and moving after the about the first 3 minutes. And crying just makes it worse.
6. When I lay down, it gets instantly worse. (I sleep propped up in a sitting position.) This is also very common. If someone says they lie down during a cluster attack, they don't have cluster headaches.
7. I've never wanted to bang my head against the wall. Neither have I.
8. During the chronic cycle, my body aches like I'm coming down with the flu or overworked my muscles. Chronic cycle? I don't understand what you mean by that. As for the body aches, are you on any medications? Or could it be from not enough sleep?
Is there anyone out there that's experiencing any of this, or are these things possible unrelated. I think they could all be related.
By the way, I've been silent on this board. It's hard to think with the headaches and I have trouble expressing myself. But I want you to know that I've recieved a lot from you and I appreciate the fact that you're always there. You've all been in my prayers - including the people who love you and feel so helpless.
- Phia
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Welcome to the board Phia. Sorry to hear you are hurting.
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Bob_Johnson
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Re: Am I alone in these symptoms?
« Reply #2 on: Feb 28th, 2005, 9:15am » |
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It is NOT necessary to have 100% of the listed symptoms to have clusters. I share several of the features you have but not others. It's that mix which sometimes confuses docs in making a Dx.
It's also possible for your symptom picture to change over time.
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Bob Johnson
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Phia
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Re: Am I alone in these symptoms?
« Reply #3 on: Feb 28th, 2005, 12:44pm » |
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Hi Bob (and Bob),
Thanks for the feedback. I just came back from my new neurologist. He's said I have CHs and has scheduled an MRA and an MRI to check on my aneurism. He's not sure if the two are related but wants to try some new pain medications after he gets the results.
So Far, narcotics haven't helped at all. The only relief seens to come from O2 - and that's only partial relief. 
Have you found anything that works for you?
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jokrs2
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Eventually He will make us pain free!
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Re: Am I alone in these symptoms?
« Reply #4 on: Feb 28th, 2005, 1:16pm » |
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I have all of the symptoms you mention, and sometimes I'll massage my head above the effected eye until it feels like I'm bruised. Last night it was severely painful to try to lay down and I don't look forward to the night. If I get 4 hours of sleep I consider myself lucky. I have the most success dealing with the pain during events with Imitrex, just wish my insurance would allow more than 9 per month. I am on my 14th day in a row and don't have any more extra tabs for 9 days, so I've got to call my doctor to see if I can get some samples. Have you heard about the guy who zippers himself into a sleeping harness in an upright position? I may end up going to that. Best wishes, Joe
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Bob_Johnson
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Re: Am I alone in these symptoms?
« Reply #5 on: Feb 28th, 2005, 2:58pm » |
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I've had excellent, consistent results with this med and cost is FAR less than the triptans.
1: Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Bob Johnson
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jokrs2
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Re: Am I alone in these symptoms?
« Reply #6 on: Feb 28th, 2005, 3:14pm » |
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To Bob Johnson
I am concerned about my imitrex usage over the distance, and am interested in effective and definitely lower cost medications. I want to thank you for mentioning Olanzapine. I will bring it up with my doc and see what he thinks. Thanks again, Joe
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don
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Re: Am I alone in these symptoms?
« Reply #7 on: Feb 28th, 2005, 5:15pm » |
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Phia,
How are you administering the oxygen and at what flow rate?
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hzzz
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Re: Am I alone in these symptoms?
« Reply #8 on: Feb 28th, 2005, 10:26pm » |
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I would say I fit all of those except the sleeping 4 hours per night. I totally agree with the head banging not being an option or the pacing. I like to remain as still as possible, but I think that is more in the fact that the headache seems to go away quicker that way. When I am still, I do feel the pain and throbbing more than if I'm moving, but if I move, pace or stay active it seems they last much longer.
#3 and #6 are especially true for me. If I wake with an attack, I immediately get up and go sit in a chair.
Does ice make yours feel better? It does for me. Hot water on my head (shower) makes it really hurt.
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Kalach
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Re: Am I alone in these symptoms?
« Reply #9 on: Mar 3rd, 2005, 10:37am » |
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I have been suffering for over 30 years, once a year at just about the same time. I have to walk around, cannot lay down. The darker the room the better. I have been using cafregot supp's as soon as I feel a HA coming on. I was HA free for 3 years, then they returned for a shorter duration. Again free for 3 years and thay returned. The Caffs seem to work the best but I have been taking Ambien (10) at night and have not had a breakthrough at all. If I go HA free for the day I take a 1/2 caff as late as possible in the evening and then the Ambien. I hope this info will help.
Bob
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