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New Guy Smell-- (Read 1743 times)
jmonty54
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New Guy Smell--
Jun 24th, 2008 at 12:13am
 
Hello,

Um, okay, I am pretty new at this internet help group, so please forgive me if I screw this up--

So, after two years of mind-blowing, soul-crushing, pain and suffering, that my doctors thought was everything from MS to a nice fat Brain tumor, my doctor, along with my neurologist, diagnosed me with chronic (two-years without a break) cluster headaches. Although it feels great to know what has been happening to me, I still have a lot of questions that I hope other suffers might be able to help with.

First--

I went through multiple controllers until we settled on 400mg of Verapamil daily. This has been working pretty well, except on the when the heat gets up (San Diego native), or I eat the wrong this (which we still haven’t been able to pin down), or just when they start for the shear hell of it.  I've stopped having the “never-ending” cycle, and it is a lot easier to handle than the lithium they had me on, but I am still wondering if this is ever going to get totally under control? Is Verapamil the right move?

Next—

Does anyone else have medication allergies? I have had an allergy to NSID’s (alleve, advil, and all the rest) since childhood, and it wasn’t until I developed this problem that I discovered I am also allergic to triptans. And, yes, I mean allergy, as in throat, eyes and lungs close, rush to the er or die allergy. I am sorry about the out burst, but I have had too many medical people dog me about this as a possible dodge for junkies. The reason I ask is I have had very few options for pain management. The best has been the O2 tank, but I have to catch it at the very start of the, um, flare-up? Attack? What is the right term for the start of a cycle/headache? Has anyone had any luck with anything? Right now I am on Norco, which can help, kind of, if I take it with the 02 at the onset, or to help with the horrible after, but does nothing mid attack.  Any advice would be great!

Last—

Is there a support message board for my wife? I think she could really use someone to talk to who knows what she is going through. There are times when I feel like she would have been better off if I had one of the horrible things they scared us with, because at least then people wouldn’t look at her like her husband is crazy thinking he has problems because his “head hurts”. Plus, I love my wife and I worry that she is having to carry this alone.

Anyway, thanks for the help and I hope to post more on this site!

Jmonty54

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MJ
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Re: New Guy Smell--
Reply #1 - Jun 24th, 2008 at 1:02am
 
Welcome home jmonty!

Last- there is an awfull lot of CH supporters right here on this site. Welcome to your wife as well.
If she desires there is a separate supporter section here as well. Join in anywhere.

Next- Plenty of med advice is available. The attacks can be called whatever you like, hits, demon b...ards, or.... we all know what you mean here.

First- I dont know the answer but I have gained control for the first time in 30 + years. Many have good success with the verapamil, I had none. Allways remember what works for one doesnt allways work for another.
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MJ
 
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George
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Re: New Guy Smell--
Reply #2 - Jun 24th, 2008 at 2:08am
 
jmonty54 wrote on Jun 24th, 2008 at 12:13am:
Last—

Is there a support message board for my wife? I think she could really use someone to talk to who knows what she is going through. There are times when I feel like she would have been better off if I had one of the horrible things they scared us with, because at least then people wouldn’t look at her like her husband is crazy thinking he has problems because his “head hurts”. Plus, I love my wife and I worry that she is having to carry this alone.

Anyway, thanks for the help and I hope to post more on this site!

Jmonty54



Welcome home, Jmonty.

Yes, there is a separate forum for supporters.  I'm sure you'll see it listed here--encourage her to join and introduce herself--supporters are the gold standard in human beings as far as we're concerned, and I can assure you she'll receive a warm welcome.

Again, welcome--and pull up a chair.  We're looking forward to getting to know you.

All the best,

George
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"Whoever loveth me, loveth my hound."  (Thomas More, author of "Utopia", and Chancellor of England.  1477-1535)
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Bob Johnson
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Re: New Guy Smell--
Reply #3 - Jun 24th, 2008 at 7:51am
 
Lithium takes some skill (from the doc) is finding the balance between effectiveness and side effects but it has been the standard for chronic for some years.

Re. triptans allergy: An option; print and give to the doc.

Headache 2001 Sep;41(8):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.



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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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Verap is our best preventive and, generally, doesn't produce serious problems. Again, working to find the best balance of dose/control may take some weeks or months but essential for your comfort. This from one of the better headache docs.
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Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
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Would encourage you to get your mind around working for long term comfort and not focusing on, "when will it end?" Chronic conditions really call for "slow & steady" and patience. There is life beyond CH!!
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Cathi_Pierce
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Re: New Guy Smell--
Reply #4 - Jun 24th, 2008 at 10:29am
 
Hi, Jmonty!
Welcome to Clusterville, and we're sorry you need to be here......but, nonetheless, I think you'll like this place.
I'd like to address the question about your wife.
Supporters come here as well as sufferers-and, yes, they need to be supported as well. Please encourage your wife to drop into the Supporters' Forum, where she can get help for herself. CH is an equal opportunity abuser-as you are abused, so the fallout is on those around you, as they worry and wait for the hits to subside. Please encourage your wife to stop in. Plenty here would love to see her, and help where they can.
To you and your family, welcome to Clusterville!
Cathi(oh, and I can't smell a thing! LOL!)
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Life is not measured by the number of breaths we take, but by the moments that take our breath away.
 
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