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Willly

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Willly from Hermosa Beach
Jan 28^th, 2013 at 1:59pm

Hi everyone. Like most of the newbies, I've lurking for a while, but finally decided to post. I'm a 46 yo male who's first and only headache started in March. It never goes away, although it wakes me up nearly every day at just about 4 am. CT, MRI, PET, were all negative during my 5 days at Cedars Sinai where they decided that I was suffering from New Daily Persistent Headache Syndrome. Somehow they all missed, despite my telling the, the ice pick stuck through my right eye, the clear fluid running out of the right nostril, the drooping eyelid, and the wide open pupil. And this guy wrote a textbook on headaches...

Any one neurologist later, I've gone through two oral and two injectable tryptans with no relief, indomethacin with no relief, a few steroid dose packs, and Tramadol.

My current regiment is 900 mg of lithium, 400 mg of verapamil, 400 mg of Topamax (dopamax), 150 mg amitripyline for pain, and O2 from bottle and mask at 10 lpm. He has also has put in for authorization for Botox.

Right now, the only slight relief I get is when I am on the hose. Within 15-20 minutes of stopping, the headache returns to that continuous 7-8 that I have been dealing with for months. Any ideas????? Thanks in advance.

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Bob Johnson

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Re: Willly from Hermosa Beach
Reply #1 - Jan 28^th, 2013 at 2:17pm

While you owe it to your docs and yourself to finish a good trial of the current meds you list, please don't add anything recommended to you here for that will compromise/confuse the trial.

When you say the triptans, for example, don't help, do you mean: doesn't abort an attack OR doesn't stop the cycle/the on-going run of attacks?

If the former, then suggests that you need a good preventive med, while the abortive (e.g., triptan) abort a single attack.

If, however, at the end of the current trial, nothing appears to stop/moderate the attacks, then need to consider that you don't have Cluster.

Type following and hold in reserve and drop on the docs if none of the present meds appear to be effective.

Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
====

Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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

or

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

or

Search under "cluster headache"
-------
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
a careful read.
=====
And type & file the PDF file, below. At some point, a good tool to discuss their thinking, treatment approach.

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« Last Edit: Jan 28^th, 2013 at 2:21pm by Bob Johnson »

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Willly

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Re: Willly from Hermosa Beach
Reply #2 - Jan 28^th, 2013 at 2:41pm

Bob -- Thanks for the reply. Regarding the tryptans, the headache doesn't cycle enough for me to define a time to "abort." I may move down to a 5 or 4 for short periods, but not often. Those periods of relief are completely unpredictable -- only the 4:00 am thing is.

I'm more than willing to give what my doc is currently doing some time to see if it works. I looked at the Cluster like headache page and will bring it up with my neurologist next time that I see him.

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wimsey1

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Re: Willly from Hermosa Beach
Reply #3 - Jan 29^th, 2013 at 8:04am

Hey there, Willy, and greetings! Yours is a familiar tale and no less frustrating for that. I agree with Bob but would like to add an observation concerning what you already take: except for the lithium the other doses are on the low end, and that might be something you can take up with your docs. For example, while some of us find relief with 240-400mg verapamil daily, many of us (myself included) need upwards of 680-960mg/day. And the O2 is pretty ineffective below 15lpm. In fact, 25lpm is pretty common, and I go as high as 60lpm. When combined with a nonrebreather mask and an energy drinki, I can abort a hit in under 3 minutes. Just some things to consider. Let us know how things go for you. God bless. lance

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Guiseppi

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Re: Willly from Hermosa Beach
Reply #4 - Jan 29^th, 2013 at 9:09am

I'll second Lance's recommendation on the 02. I use a demand valve, which allows me to breathe as fast and heavy as I want. When I feel an attack coming on I start huffing the 02 as fast and deep as I can breathe. In 6-8 minutes I'm pain free. I can't remember the last time it allowed an attack to get past a 5 or 6.

15 LPM is considered the rock bottom, bare minimum around here, with most getting MUCH better results at 25 LPM or better. It's why many of us go out and get our own regulators as it's exhasuting trying to convince these doctors to let us go higher.

Joe

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Willly

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Re: Willly from Hermosa Beach
Reply #5 - Jan 29^th, 2013 at 1:10pm

Thanks all of you. Are you guys getting a script for high flo O2 or doing it yourself. I've got a couple of complications. I'm also bipolar and need to keep the lithium within therapeutic levels. Plus the Topomax is also being used as a mood stabilizer.

My biggest issue is that the headache/headaches NEVER go away except for the 4:00 am peak. I still have all of the classic Horton symptoms, but none of the waxing and waning beyond dropping infrequently to a 7 or 6 from an 8 or 9. Literally my life revolves around not begging for something to drug me up do I don't care. So far, I have done so, but I have had a basically a 7 headache since March and there are days that I would like to just close my eyes and not care. It really sucks. Since I am acute nearly all the time, what else do you guys do?

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Potter

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Re: Willly from Hermosa Beach
Reply #6 - Jan 29^th, 2013 at 1:21pm

Willly wrote on Jan 29^th, 2013 at 1:10pm:

Thanks all of you. Are you guys getting a script for high flo O2 or doing it yourself. I've got a couple of complications. I'm also bipolar and need to keep the lithium within therapeutic levels. Plus the Topomax is also being used as a mood stabilizer.

My biggest issue is that the headache/headaches NEVER go away except for the 4:00 am peak. I still have all of the classic Horton symptoms, but none of the waxing and waning beyond dropping infrequently to a 7 or 6 from an 8 or 9. Literally my life revolves around not begging for something to drug me up do I don't care. So far, I have done so, but I have had a basically a 7 headache since March and there are days that I would like to just close my eyes and not care. It really sucks. Since I am acute nearly all the time, what else do you guys do?

We crank up the flow rate till we can't suck the bag flat.

Potter

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Willly CH.com Newbie Offline I Love CH.com! Posts: 12	Re: Willly from Hermosa Beach Reply #7 - Jan 31^st, 2013 at 1:09am Thanks. I though I'd let you know that my doc just added Depakote to the mix. 500 mg twice a day.
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wimsey1

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Re: Willly from Hermosa Beach
Reply #8 - Feb 1^st, 2013 at 8:47am

Quote:

Are you guys getting a script for high flo O2 or doing it yourself.

Either, whatever does the trick. I think most of us buy our own regulators and masks just to get the flow high enough, and because the masks the O2 companies send along are pretty useless. You sure are on a boatload of meds. It will be hard to determine which if any are doing you any good for CHs. I would encourage you to get and use high flow O2, couple it with an energy drink slam, and keep writing to us. You need to know you aren't alone, and we won't lose patience just because you're having a hard time finding something that works. We understand. Prayin' for ya. blessings. lance

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