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New supportive member from Alaska (Read 809 times)
Polarhug
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New supportive member from Alaska
Nov 15th, 2012 at 6:59pm
 
My husband of 14 years has just been diagnosed today with cluster headaches. He had been misdiagnosed as a migraine sufferer years ago, but the intensity of the past few months ramped up his condition to the point that he was begging a doctor for help.

I've been in the car with 2 babies at 3am, with him screaming to drive faster to the emergency room. Then suddenly its gone.

Been there at 2am when he wakes up from a dead sleep yelling, kicking the footboard in agony, shattering it.

When he is on the floor rocking back and forth begging me to shoot him in the head to stop the pain. When he is crying and vomiting. I've been there.

Praying like crazy this doctor will be able to help. We live in Alaska, with very few specialists.

Just so thankful to have found this haven  Smiley
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Polarhug
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Re: New supportive member from Alaska
Reply #1 - Nov 15th, 2012 at 9:21pm
 
Things we've tried previously when he started getting headaches 8 years ago:

He quit smoking. Which helped 90%! That was his main trigger back then. Imitrex nasal spray was prescribed when we had Ins... which always quelled the beast.
A cup of steaming hot black tea (must have been the caffeine but we didn't know that). He said he tried energy drinks and just pukes them all back up after chugging  Sad

He was moderately pain free for 7 years but this winter they have come back with a nightly vengeance. His main trigger this time is alcohol in ANY form and scents. Unfortunately we are a homebrewing and craft wine making business and this is really hurting our livelihood as well as his passion!

Today Doctor prescribed: Phenergan, Prednesone, Imitrex, Vit D, Flax & Fish Oil, and a modified diet. Sounds like he is on the right track!! Fingers crossed! It's so frustrating for him, and hard for me to see him in pain. I love him so much, I'm his biggest fan and willing to help him through anything!
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Jeffire
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Re: New supportive member from Alaska
Reply #2 - Nov 16th, 2012 at 7:59am
 
One of the harder things about my CH is the effect it has on the people around me. I try to get out of bed and dance without my wife being the wiser. She is the wiser and knows every time. God bless you for being there!

This site has helped me feel like I have a bit of control over my life when I'm in cycle. I'm glad you found it and hopefully your husband can get some control, as well.

Be sure to check out the oxygen info on the left of the page. I can't recommend oxygen highly enough as an abortive.

Check out the imitrex tip, as well.

Here's hoping for a short cycle and many pain free days.
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Guiseppi
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Re: New supportive member from Alaska
Reply #3 - Nov 16th, 2012 at 9:27am
 
Welcome to the board Polar, and you too Jeff! I'll second Jeff's suggestion on the oxygen, here is the link on how to use it. I worked as a cop for 30 years and on cycle kept an e-tank in the trunk of my cruiser. I'd feel beasty come calling, put myself out of service for 10 minutes while I huffed 02, then I'm pain free and back in service!

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Is the phenergan to help him sleep at night? Because many here use melatonin to avoid the night time hits. Start with 9 mg about 30 minutes before bedtime. Some go as high as 18 mg to get relief. Many have avoided the night time hits this way.

The prednisone is okay for a temporary break from attacks but should not be taken loing term. A popular long term prevent is verapamil, print this out and take it to his doc:

A widely used protocol. Your doc will recognize the source and author:

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).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented



You have much to learn as doctors are amazingly un-educated in the treatment of CH. Relying only on their knowledge will lead you to many painful attacks. Read everything you can on this board, then work WITH your doc to find an effective treatment regimen. We'll help you all we can. Thanks again for being a supporter. Without my loving wife of 30 years, who found this board for me, I don't know what I'd have done!

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Polarhug
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Re: New supportive member from Alaska
Reply #4 - Nov 16th, 2012 at 2:14pm
 
Thank you for replying!

The doc did *note* Oxygen as a 2nd go to, but hasn't prescribed it yet. I'm going to push him on that if this doesn't work.

We've tried melatonin in the past but he can't wake up the next day, it really lays him out cold. We will try a lower dose tonight. He wakes up exhausted every morning.

Prednisone regimen is only 5 days. We are really pushing the Vit D and Omega 3's too. Our daylight is waning here in Alaska - we don't even see the sun but for a few hours each day now and most of those hours are spent indoors of course.

I'm reading and learning like crazy. Relaying him this site also although he is living it every night and would probably not read about it again every day  Sad

I'll be his patient advocate if I have to. He's worth it, and worth being pain free  Smiley
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Guiseppi
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Re: New supportive member from Alaska
Reply #5 - Nov 16th, 2012 at 4:02pm
 
He's damned lucky to have you for an advocate. Tell him I said that! Wink

Do push hard for the oxygen, 35 years of these damned things and NOTHING compares to 02 for speed of abort, cost, and no side effects. It's all but eliminated my use of the Imitrex Injections, it works that well.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Bob Johnson
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Re: New supportive member from Alaska
Reply #6 - Nov 16th, 2012 at 4:37pm
 
The doc sounds serious but it would not hurt to print out the PDF file, below, and give to him.
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Kevin_M
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Re: New supportive member from Alaska
Reply #7 - Nov 16th, 2012 at 11:45pm
 
Polarhug wrote on Nov 15th, 2012 at 9:21pm:
Today Doctor prescribed: Phenergan, Prednesone, Imitrex, Vit D, Flax & Fish Oil, and a modified diet. Sounds like he is on the right track!! Fingers crossed!

Quote:
The doc did *note* Oxygen as a 2nd go to, but hasn't prescribed it yet. I'm going to push him on that if this doesn't work.


The Imitrex tip Jeffire mentions can be important.  I don't know which type of Imitrex you have, but when in cycle it's good to stay in contact with the doc.  Jeffire and Guiseppi's suggestion is knowledgable, the oxygen would be a great added insurance for at home.  With first attempts at preventives, docs may seem not exactly in tune.  In all cases, while working on it, oxygen can be a pretty sure-fire abortive while finding a preventative, which may take several weeks.  These things ain't called clusters for no reason.  Wink



Quote:
I'll be his patient advocate if I have to. He's worth it, and worth being pain free


Oh yeah!  Hang in, it's tough to be there while expletives don't describe the hell, but we understand in an unforgettable way, and your caring, sane mind is there reaching for someone that can be overwhelmed.  This pain is overcoming to each of us, but makes us avid seekers and intently motivated to find what works. 

Thanks for being there.   Welcome.     Smiley
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