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Need some Advice - Nother Rant from Norcal :) (Read 1544 times)
JSCartier
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Need some Advice - Nother Rant from Norcal :)
Dec 25th, 2008 at 3:04pm
 
Hey everyone just stopped in to say hello. I'm working on day.. what is it 29 of this particular round.

Currently taking:
Imitrex 6mg
Depakote 500mg
Verapamil 250mg
Prendisone 20mg
O2 as much as I need all day long

And to top that off , I have other Narcs to use when I cant abort.

Currently for the last week I have been unable to fully abort any of my headaches. No amount of O2, imitrex, Maxalt etc is working and I am starting to get a little worried.

Last week my Neuro started me on a round of 2x Hydrocodone and 1x Oxycodone every 2 hours to basicaly knock me out.

I am out of work on Temp disability until we can get this round aborted, but it seems that as soon as I get one over I get hit again just a few minutes later.. and truth be told I'm tired of pills and injections.

Sleep is not too bad, maybe 3 hours but then I get woke up by screamers and have to do the usual dance with my O2 as my partner ( the hell with the beast, I think it needs to sit this one out )

In total this has been going on for over 6 months now, and I wonder if im going chronic, though I have no idea what the  time frames are for chronic versus episodic.

So, Drugs aside, and the usual Hot/cold/dance/ bang head here advise , anything else you can recommend.  I am not quite at wits end, but I see the back of the alley approaching fast.

I do use red bull shots and they do help to dull the pain but they only last so long.

I am typing this while looking at my new generic Imitrex kit with my needle all set wondering if this will give me more then an hour respite from the beast or if it will be another all nighter.

While talking to my Neuro last week he was just trying to keep me "pain Free" until he could get back from vacation ( Doc, I hope you are enjoying your Family and Friends for Xmas, for without them we all would be lost and alone )
He stated if things get worse to head to ER, but all they will do there is fill me full of Dilauded and send me home ( oh joy more drugs )

I dont want to be snowballed for the next couple of months and I'm tired of having to take painkillers due to not being able to abort the headaches.

I was able to get a full abort after about 4 - 15 minutes , now all I get is a reduction for 1 to 5 hours, might even be PF for a couple of hours .

My Family and friends are starting to get worried because the headaches are getting worse, and the aborts are failing.

Even worked with my Primary care physician for a plan to stop smoking ... but the meds he wanted to perscribe have a BIG warning on them  CAUSES HEADACHES , I was wondering if he knew about them before writing the script. Of course I didn't get them, yeah just what I want , to take a med that causes headaches ....

Anyway Enough of my rant here

Signed,
  worried and wondering
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Marc
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Re: Need some Advice - Nother Rant from Norcal :)
Reply #1 - Dec 25th, 2008 at 3:30pm
 
Sounds like you’re having a pretty rough time. Some thoughts and some questions:

- I'd like to hear exactly how you are using O2?

- Have you explored with your Doc raising your Verapamil dose to more therapeutic level? (This is where I would focus, right after proper use of O2)

- Some people report getting great relief from Imitrex, but they get a larger number of hits.

- How often are you taking the Prednisone? Is that 20mg per day?

Merry Christmas
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« Last Edit: Dec 25th, 2008 at 3:32pm by Marc »  
 
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JSCartier
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Re: Need some Advice - Nother Rant from Norcal :)
Reply #2 - Dec 25th, 2008 at 3:40pm
 
Marc,

Currently using 15lpm with a non rebreather. Usually at onset and for roughly 15 - 20 minutes, ( at least 5 minutes past almost PF)

I will be getting a 25lpm regulator  and O2pti mask as soon as I can afford one, but right now the pocketbook has dust in it.

I will be talking to my Neuro about the verapamil though he will not be in until the 29th. He started me on Depakote on the 10th and still waiting for results, but with all things it takes time.

I try to use all other aborts besides the imitrex if I am able, even considering trying the tips for roughly a 2mg dose instead of the full 6. 

The Prendisone was a taper , 3x 20mg per day for 6 , then 2x20mg per day for 5 days, 1x20 mg 3 days 

though I dont seem to respond to the prendisone, at least not that I can tell after being 2 tapers.

May have to talk to the Doc and neuro again about other meds and possible aborts, but at this time im stuck for a couple of days until they get back from vacation
Shocked
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AussieBrian
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Re: Need some Advice - Nother Rant from Norcal :)
Reply #3 - Dec 25th, 2008 at 4:00pm
 
Also look at researching the terms rebound headache and medication headache.

Hoping Christmas is treating you well,

B.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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JSCartier
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Re: Need some Advice - Nother Rant from Norcal :)
Reply #4 - Dec 25th, 2008 at 4:17pm
 
B,

Thanks for the thought, But even after the usual 24 to 48 hours without imitrex, maxalt or any pain killers I'm still getting hit.

MY aunt suffers from sever chronic Migraines and introduces me to imitrex, with the warning about rebounds and her term of "imitrex Hangover".

I worry about the amount of meds that I'm currently taking and use my pain killers as last resort, but even then I get only a couple of hours of respite ( being k3 or lower ) before the next wave hits.

When the Neuro directed me for 2x hydro and 1x Oxy every 2 hours I was in the middle of a 9 that would not abort no matter what I was trying. that one lasted 4 hours. That was about a week ago.
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UnderTheRadar
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Re: Need some Advice - Nother Rant from Norcal :)
Reply #5 - Dec 25th, 2008 at 4:34pm
 
Check out clusterbusters.com.  Read all the info, and check out the links to MAPS and the clinical studies going on at Harvard and Yale.  There's hard science behind this. 

It's much harder to abort an ongoing cycle than to prevent one, but in the middle of my cycle I got several week-long stretches of complete relief after each dose.
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JSCartier
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Re: Need some Advice - Nother Rant from Norcal :)
Reply #6 - Dec 26th, 2008 at 12:06am
 
Thanks for the info ! I had originally found ClusterBusters before I found Ch.com and though they have a lot of info, I don't know if I can go that route. Though I have seriously considered it.

Even to the point of finding someone outside of California to have the spores shipped to, but then again that opens up another can of worms that I don't need right now.

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Anyone Have a Spoon ??.. If i can just get the right eye out ..
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Guiseppi
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Re: Need some Advice - Nother Rant from Norcal :)
Reply #7 - Dec 26th, 2008 at 12:26am
 
The only suggestion I have is trying the 1-2 punch I use. Oxygen will abort an attack for me in about 6-8 minutes, but it comes right back within 20 minutes of shutting down the 02.

Now I take an oral cafergot as soon as I start the oxygen. The 02 knocks it down, the cafergot will buy me up to 12 hours pain free time. Cafergot is an old school CH med that fell out of favor bcause it takes 10-15 minutes to get into your system, so used by itself, it didn't work well for CH. Combining it with the 02 has worked well for me for many years. Others have posted similar results.

Certainly not a doctor here, but given the number of painkillers you're talking about, I'd be worried about rebound headaches too.

Hang in there, sounds like you're in a nasty patch right now!!!

Joe
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JSCartier
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Re: Need some Advice - Nother Rant from Norcal :)
Reply #8 - Dec 26th, 2008 at 12:50am
 
Guiseppi,

That amount of PK's was for a 2 day period last week for a nasty K9 that would not stop after 4 hours.

I cant stand the Narcs myself, but its either the RX narcs or if it gets bad enough that I have to go to the ER ( un-aborted k8+ for 4 or more hours ) All they give around here is Dilaudid shots ... I swear sometimes I am dealing with those that "practice way to much medicine "

Its even worse when the Neuro agrees with them

So tomorrow I have to get on the horn and talk to my Primary, ask him for a referral to another Neuro who specializes in CH or at least Headaches in general.

Then to my Insurance for GAP coverage for an out of network Specialist ( thank you OUCH ) that is in my area. The closest specialist in my provider network is either 80+ or 200+ miles .

Well I just got through with my second O2 and first trex shot , and I am hoping this will break enough for sleep tonight.

I have to see if I can get an appointment with my Doc tomorrow and go over a few notes and concerns. 



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Bob Johnson
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Re: Need some Advice - Nother Rant from Norcal :)
Reply #9 - Dec 26th, 2008 at 8:59am
 
I'm struck by the low Pred dosing. It's not uncommon to start a taper at 100mg. Would explore this with the doc.

Ditto with Verap. Print following for him------
========
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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« Last Edit: Dec 26th, 2008 at 9:00am by Bob Johnson »  

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JSCartier
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Re: Need some Advice - Nother Rant from Norcal :)
Reply #10 - Dec 26th, 2008 at 4:46pm
 
Hey Bob,

Thanks for the info. I have another appointment with my Neuro on the 4th, but I think in the meantime I will be getting a referral from my new Doc for a different Specialist.

I can understand having to keep trying different aborts, prevents and meds till you find what works, but Patience and time I seem to be running out of.

My original Doc refused to set up a referral for a Neuro for 4 months, kept throwing drugs related to Migraines at me, and when it came down to CH, he remarked that he had only had 1 patient that was diagnosed with CH and was sent to a specialist and never again saw that patient.

I will talk to my Doc and neuro about the Pred Taper and changing the dosage of the Verap to something a little more inline with current dosing. Will print out the excerpt that you added and bring that to both the doc and Neuro.

For now I'm still hanging at a K3 - 5 level with spikes from 7 - 9 thrown in for good measure.

Red Bull on the ready, O2 primed and ready, Trex is a last resort but still ready
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UnderTheRadar
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Re: Need some Advice - Nother Rant from Norcal :)
Reply #11 - Dec 26th, 2008 at 9:03pm
 
If you want to try the "indole-ring abortives" (aka clusterbusters) but can't get the shrooms, most people don't realize that it's actually legal to buy LSA seeds (myself included!)   There's a couple of distributors listed on clusterbusters that sell pesticide-free seeds, and they are very cheap.

I personally recommend Rivea Corombosa seeds over the other species, because (supposedly) they give you less nausea than the others...I didn't get nauseous at all, in fact.  I paid $50 at Iamshaman for 500 seeds, and put on an extra $18 for overnight shipping...that's 8-10 doses for most people.
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