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So. Frustrating. (Read 1560 times)

krys

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So. Frustrating.
Apr 13^th, 2011 at 6:07pm

My husband's cluster attacks seem to have gotten farther apart (knock on wood), but the constant headache he's had since the second week of the attacks has gotten much worse over the last 48 hours. He says it is an 8 on the pain scale now (it was 6-7 most of the time before, but would get worse some nights, but not the same stabbing/burning/ice pick pain as the cluster attacks.)

He's on verapamil - the doctor just increased the doseage to 800mg. They also want him to start prednisone AGAIN. Does this sound normal? It didn't seem to help at all the first time (in fact this constant headache started around when he started the prednisone). They also want to do another nerve block. And have mentioned that if those aren't successful, the only option is surgery.

BUT they still have no idea what is causing this constant headache. Up until the last few days, it was both sides of his head, like someone was pressing on his head all the time. Now it's just one-sided (same side as the attacks), or maybe it's both sides but one is worse than the others. He was on indomethacin for a few weeks last month but it was not helping the constant headache, but it doesn't seem like the same headache..it seems like that one has morphed into the one-sided one. (And maybe the doseage needed to be higher?) But they have no idea what this constant headache could be from. It started right around the time they had thrown many different medicines at him (incl. narcotics and a barbituate) and after a spinal tap and after starting imitrex. (He's no longer taking the Imitrex or any of the other meds other than verapamil.)

Then there's the shaking problem that I mentioned in another post..shaking/tremors..that makes me feel like something else is going on and maybe this just seems like cluster headaches, or maybe it is cluster headaches along with something else.

Anyway, just looking for some encouragement/suggestions/anything that may help. He has oxygen and one of the high-flow regulators, and is taking fish oil and D3 and melatonin and kudzu root and other things daily.

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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: So. Frustrating. Reply #1 - Apr 13^th, 2011 at 6:15pm Does his doctor know he's taking kudzu (as well as the other supplements) along with the verapamil? Just asking. Best wishes, George
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krys CH.com Junior Offline I Love CH.com! Posts: 44 DC/VA	Re: So. Frustrating. Reply #2 - Apr 13^th, 2011 at 6:37pm George wrote on Apr 13^th, 2011 at 6:15pm: Does his doctor know he's taking kudzu (as well as the other supplements) along with the verapamil? Just asking. Best wishes, George I think so. Do they interact? I think I remember kudzu had some similar qualities...
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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: So. Frustrating. Reply #3 - Apr 13^th, 2011 at 6:57pm Kudzu has been reported to interact with verapamil. Check with his doctor before continuing, okay? All the best, George
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wimsey1

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Re: So. Frustrating.
Reply #4 - Apr 14^th, 2011 at 8:35am

He's getting up there with the verapamil dosage, and you continue to describe symptoms that may indicate a comorbid condition...do you have confidence in your doctors? If you aren't sure, you might want to get a second opinion? And there are other preventatives around. Maybe it's time to try one of those instead? I don't know. Tough situation. My CHs tend to become intractable, too. I stopped looking for 100% effective preventatives and now jump on anything that will aid in aborting, or mitigating, the intensity and duration of the hit. It sounds like your husband is getting to that place as well. I am truly sorry for his, and your, pain. Make as long a list as you can of all the stuff you read here and elsewhere that has helped someone that you have not yet tried. Such a list is a reminder there are options available, and can serve as a roadmap for what to try next. It is a way to maintain hope, and hope is critical right now. Good luck and God bless. lance

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Bob Johnson

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Re: So. Frustrating.
Reply #5 - Apr 14^th, 2011 at 9:37am

That Verap is the only med being used rings a bell for me! Why none of the abortives, even if not Imitrex?

Might print out this abstract and see if the doc is interested/willing to give it a brief trial.
---
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.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

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.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
====

The constant headache raises the issue that this is not classic Cluster. Suggest print out this file and giving to the doc.

Look under: Medications, Treatments, Therapies › Important Topics >Cluster-LIKE headache

Bob Johnson

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krys

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Re: So. Frustrating.
Reply #6 - Apr 14^th, 2011 at 3:30pm

George - We asked, and the doctor wasn't aware of any interaction. I'll try to research a little online. He started the kudzu long before starting the verapamil...but it's no problem taking the kudzu root out of the regime. (Thanks for the heads up!)

wimsey1 - The doctor mentioned possibly looking at Lithium next, after trying the higher doseage of verapamil. This neuro he is seeing now seems good, though I'd love to get him in to see someone who specialized more in cluster headache and related issues specifically.

Bob - He tried Imitrex, and it didn't help; he has DHE nasal spray and it doesn't help. Oxygen helps sometimes, but not for the constant headaches, just for the attacks (but not all the time). Thanks for mentioning the olanzapine, we'll bring it up next time.

I asked if it could be something cluster-like with all the same symptoms..the doctor is pretty confident in the diagnosis of the cluster headache attacks (for the attacks) and thinks the chronic constant headache since week two of the bad cluster attacks could just be chronic cluster headache. I'm a little confused on this - would chronic cluster headache mean the headache is constant, 24/7, or that the cluster just does not ever end? (I was assuming it meant that it was just a neverending cycle rather than neverending constant headache.) Indomethacin was tried before to rule out hemicrania continua, but at the time the constant headache was both sides of the head, where now it's just the one (same side as cluster attacks). I asked about trying Indomethacin again and the dr. said not while on the prednisone.

He did mention looking into surgery options soon...

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Mike NZ

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Re: So. Frustrating.
Reply #7 - Apr 15^th, 2011 at 3:32am

krys wrote on Apr 14^th, 2011 at 3:30pm:

I'm a little confused on this - would chronic cluster headache mean the headache is constant, 24/7, or that the cluster just does not ever end? (I was assuming it meant that it was just a neverending cycle rather than neverending constant headache.)

Chronic cluster headache is defined by the International Headache Society as:

Quote:

Cluster headache attacks occurring for more than 1 year without remission or with remissions lasting less than 1 month.

With episodic as:

Quote:

Cluster headache attacks occurring in periods lasting 7 days to 1 year separated by pain-free periods lasting 1 month or longer.

The only difference in the definitions is the differences in the duration of the remissions.

So a 24/7 headache is not a chronic CH.

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Batch

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Re: So. Frustrating.
Reply #8 - Apr 15^th, 2011 at 9:59am

Krys,

It sure sounds like your husband is suffering from two different types of HA at the same time. I'm not a doctor, but in reading your posts and PMs it's clear your husband has CH as confirmed by his doctors...

It also appears there are two other possibilities for the second type of continuous headache your husband is experiencing.

From the ICHD-II 1st revision:

4.7 Hemicrania continua

A. Headache for >3 mo fulfilling criteria B-D
B. All of the following characteristics:
1. unilateral pain without side-shift
2.daily and continuous, without pain-free periods
3.moderate intensity, with exacerbations of severe pain
C. At least one of the following autonomic features occurs
during exacerbations, ipsilateral to the pain:
1. conjunctival injection and/or lacrimation
2.nasal congestion and/or rhinorrhoea
3.ptosis and/or miosis
D.Complete response to therapeutic doses of indomethacin
E. Not attributed to another disorder

Comment: As I recall, your husband didn't have a complete response to the indomethacin his doctor prescribed... This may or may not rule out HC.

I've a good friend and fellow CH'er who also suffers from hemicrania continua (HC) and migraine... what a lucky fellow... His HC responds well to both indomethacin and oxygen therapy at flow rates that support hyperventilation.

and finally, the second possibility...

4.8 New
daily-persistent headache

A. Headache for >3 mo fulfilling criteria B-D
B. Headache is daily and unremitting from onset or from
<3 d from onset
C. At least two of the following pain characteristics:
1. bilateral location
2.pressing/tightening (non-pulsating) quality
3.mild or moderate intensity
4.not aggravated by routine physical activity
D.Both of the following:
1. not >1 of photophobia, phonophobia or mild nausea
2.neither moderate or severe nausea nor vomiting
E. Not attributed to another disorder

Comment: From your last post, you say your husband's continuous headaches have finally resolved to one side. Again, I'm not a doctor, but it appears there's a possibility your husband may be shifting or have shifted from HC to the daily-persistent headache.

Finally, before you and your husband start considering surgical options, I would suggest a trip up to see Dr. Todd Rozen at the Geisinger Neuroscience Institute, in Wilkes-Barre, PA:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

If you sign up for his demand valve study that's still in progress, you'll be sure to get a thorough evaluation from him. The new daily-persistent headache is one of his areas of interest besides CH and other TACs as you'll see in the link above.

Take care

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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krys

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Re: So. Frustrating.
Reply #9 - Apr 15^th, 2011 at 10:40am

Mike NZ - Thanks, that's what I thought. He describes the one-sided headache now as kind of feeling like a cluster attack is coming..but it's been almost 72 hours now that he's been at 8 on the pain scale. It only went down to 6-7 after a ton of drugs at the ER...

Batch - The doctor thinks it's two types of headaches too, cluster headaches and then..the other one no one really has any idea. The verapamil doseage is increasing, so hopefully that will help...somehow. Or maybe the prednisone will help this time. The DHE nasal spray he has hasn't helped, but I'm not sure if IV would help more.

It does really sound like it was the new daily persistent headache (since it was more bilateral before..he thinks) and now hemicrania continua (since it is now more one-sided with periods of higher intensity). He didn't respond to the indomethacin before, it didn't seem, and they were going to increase the doseage but then stopped the indomethacin. The doctor said he can't take the prednisone at the same time as the indomethacin and he had already started the prednisone the day before yesterday. (The previous doctor had him on both, at the same time, and this doctor says that should not be done.)

I asked about a MRI of the spine, just in case this could be looking like cluster headaches but actually symptoms of something else, but the doctor said there isn't really a condition in the spine that would cause this. The only thing that showed up on the MRI/MRA was a developmental venous anomality in the left brain...I don't really know what that means but it seems like too much of a coincidence that that is there at the same time as all of this...

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