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A Continuous Cluster?  HELP! (Read 5785 times)
Vomact
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A Continuous Cluster?  HELP!
Aug 21st, 2008 at 10:33am
 
Hi all:

I was first diagnosed with cluster this April. I have 6 hits a day.
They come like clockwork. If you put me in room with no clock and no windows I could tell you the time of day.  I was initially placed on Topamax. That lasted for about 6 weeks. I kept on getting "bleed through" pain and I could not tolerate the cognitive effects.  I couldn't think and I felt like a zombie.   So I talked to my My Neuro and he stopped the Topamax and started me on Dilantin. That seemed to work fine. No real side effects that I noticed. It stopped my headaches except for what I call 'knitting needles' which were little jabs at my regular cluster times and occasional Horton's symptoms. I am currently taking 600 mg a day.

I thought WOW, this is great. I am all set!

NOT!

All was fine until last Friday when the came back and they got progressively worse. I was at the "head in the freezer" stage by Saturday afternoon. By Sunday morning I was in the emergency room. The ER staff shot me up with Valium and Compazine held me for a couple of hours and sent me home. Things have not improved. I called my Neuro on Monday and he though I had symptoms of Dilantin overdose, so he reduced my dosage by 100 mg.  

Still no improvement. The headaches were still coming, so my Neuro put me on Verapamil yesterday. My 1:30 AM hit came last night, as bad as it has been for a week.

IT HAS NOT LEFT!

I seem to be having one continuous headache.  It just seemed to flow right into my 6:30 AM.I am about to start the 10:30 AM and I have to stop typing as it is getting hard to see (and sit down).

Has this every happened to any body out there?  What do I do?
Any advice is always gratefully appreciated

Vomact Embarrassed


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Ray
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Re: A Continuous Cluster?  HELP!
Reply #1 - Aug 21st, 2008 at 10:43am
 
Dear Vomact:

You have not mentioned any "abortive" medications.  I use Imitrex injections and Oxygen.  When taken early, either one of these work to abort a cluster headache within about 5 minutes (for me).

Second of all, there can be an increase of headaches due to medications, or withdraw of medications, or over use of over the counter medications (asprin, acetamenaphen, ibuprophen, etc).  Narcotics step up many peoples headaches and should be avoided.

I hope this helps you somewhat at least,

Ray
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Re: A Continuous Cluster?  HELP!
Reply #2 - Aug 21st, 2008 at 10:53am
 
I can't answer your question about the med side effects. Do you have oxygen yet? It should be your first line abortive, it has no side effects and will stop an attack for me in less then 10 minutes. You should have a rig at home with a high flow regulator, at least 15 LPM, and a non re breather mask.

Verapamil generally takes a while to become effective, 7-14 days before you're likely to see beneficial effects. One of the problems with verapamil is it can take a fairly high dose, like upwards of 960 mg a day, before it begins helping. Doc's will often use a prednisone taper to give you some relief while the verapamil is building up to a therapeudic level.

If you have a slamming shadow that just won't leave you be, have you tried strong coffee or an energy drink like Red Bull, Rock Star etc? Any which contain the combo of caffeine and taurine. Might help dispel those shadows for you.

Hoping the verapamil kicks in soon for you.

Guiseppi
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thebbz
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Re: A Continuous Cluster?  HELP!
Reply #3 - Aug 21st, 2008 at 11:48am
 
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A good drug therapy will include an abortive, a transitional med, and a preventative.
all the best
thebb

02, and caffeine
A cluster episode is non-stop. Individual attacks come and go in clusters, however the episode includes, depression, sleep disturbance,sleep deprivation, shadow headaches, and side effects from drug therapy. Grin 
Smiley
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DennisM1045
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Re: A Continuous Cluster?  HELP!
Reply #4 - Aug 21st, 2008 at 12:55pm
 
Sorry to hear you're getting nailed like this.  The ferocity of the attacks could very well be due to the narcotics and stopping the topomax.

You really need to get an abortive going.  Oxygen and/or Imitrex injections are a good place to start.  My 1st line of defense is Oxygen.  On the very rare occasion it doesn't stop them I resort to Imitrex injects.  This combination hasn't let me down yet.

While you are on the phone with your Neuro talking about abortives, talk to him about a steroid taper. 

Verapamil therapy is usually started along with a steriod taper.  The idea is that the steroid stops the attacks in the short term giving the verapamil the 10-14 days it needs to become effective.

Verapamil doses are unusually high for cluster heads.  Anywhere from a bare minimum of 240mg ip to >1000mg per day.  My magic # is 400mg.

Verapamil requires an EKG every six months and any time the dosage is increased to check for heart rythm issues.  About 20% of patients taking verapamil develop them over time.  Once you stop taking the drug the problem goes away.

The other thing to watch out for is constipation.  Drink lots of water and consider Miralax if things get too backed up.

Good luck...

-Dennis-
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Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
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coach_bill
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Re: A Continuous Cluster?  HELP!
Reply #5 - Aug 21st, 2008 at 3:33pm
 
hang in there. has pregnazone worked for you? we all have tried or most of us anyway, it stops my cycle cold in its tracks at 80mg taper. but 1 time they did return, so i took a longer taper and away it went you might also wanna try melatonin at night it will help with the night hits.. oxygen!! oxygen. oxygen. and by the way did i say oxygen!! get it and start working it. keep up the good fight. coach bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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Vomact
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Re: A Continuous Cluster?  HELP!
Reply #6 - Aug 21st, 2008 at 5:05pm
 
My Thanks to all for the responses and support. You guys are my hero's. The hit has abated as of ~3:00 PM.

I just talked to to my Neuro's cover about 20 minutes ago. My Neuro's out for three days. I am taking 600 mg of Dilantin and now 180 mg of Verap. The Neuro just added Depo (methylprednisolone) for the next seven days.  He indicated he doesn't want to change anything else until the Verap has had time to kick in.

In regards to your questions about oxygen, nothing has been mentioned so far, nor Imitrex. I have researched ALL the meds including Imitrex and the cost scares me. I have seen anything from $2.50 to $7.00 per pill depending upon the manufacturer (Generic\Non-Generic) and dosage.  I suppose I can't let the cost bother me if the hits get so bad I can't work. I missed many (too many) days of work when I was on the Topamax.  The only other meds I am on are Paxil and Valium for depression, so these are not MOH or rebound headaches. I was told to stop taking ANYTHING not prescribed by a doctor until it was passed by the Neuro.  They wanted to try an find out what my triggers are. This included ALL OTC meds, supplements, etc. I do not smoke or drink.  

My impression of cluster treatment so far is that doctors (in general) play darts with meds to treat it (and other chronic pain syndromes). None of the medications used to treat cluster were developed to treat it specifically and everything is used off label. The seem to cast about until they hit a med, or polymeds that work. In the interim the cluster sufferer goes through unbelievable pain.  I also have DDD and no disks at S1, L4 & L5. I have been in pain management several times. I remember filling out the Owestry pain charts.  I have to laugh at them now.  I though I knew what severe pain was like when my back was bad. Cluster is a different universe. For back conditions they throw hydrocodone, oxycodone & hydromorphone at you like they are candy.  Not so with cluster, nor am I advocating or think it is (ultimately) a good thing in any event. I have had to STOP taking narcotics after lengthy pain management was over and believe me that is not a fun experience. Doctors have to always consider the dangers of iotragenic addiction, self medication and abuse. The danger will always be there with opiods. I also understand they operate under the restrictions of the Hippocratic oath... "prescribe no deadly poison" and "do no harm", but you would think the medical profession (and big Pharma) would find some solution for cluster, probably the most painful condition (IMHO) know to man that doesn't have the good courtesy to kill you.

Thanks,

Vomact

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Garys_Girl
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Re: A Continuous Cluster?  HELP!
Reply #7 - Aug 21st, 2008 at 5:40pm
 
Oxygen is the first, best line of abortive defense for clusters.  Please talk to your neuro about oxygen!  If there is a medical supplier near you, it should be easy to get with a prescription, and if you have insurance, with some goading and help from info here, you should be able to get at least part of it covered.  The scrip should be for 02 to be delivered at 15 lpm (liters per minute) with a NON-rebreather mask.  This is a high flow rate - though there are methods for using higher flow rates that can be more effective, or effective for people for whom the 15 lpm is no longer working.

Batch is the king of 02 - please feel free to PM him for more info!

Laurie
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Linda_Howell
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Re: A Continuous Cluster?  HELP!
Reply #8 - Aug 21st, 2008 at 6:23pm
 


Welcome to the house that pain built.

Anything I would have said has already been said by the others who got to your questions here ahead of me.

I do have to say this,  about...

Quote:
I was at the "head in the freezer" stage


      I, and others here know exactly what you're talking about.  Try ice packs though instead,  so you don't melt your meat.

(shut-up, to any of you who are about to say something about now)

        Linda
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Hurt people.....hurt people.   Think about it.
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Re: A Continuous Cluster?  HELP!
Reply #9 - Aug 21st, 2008 at 6:36pm
 
Did you mean "defrost the contents," dear? Grin
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Linda_Howell
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Re: A Continuous Cluster?  HELP!
Reply #10 - Aug 21st, 2008 at 6:47pm
 


   Roll Eyes  I was expecting Chuck to be first...  but you were next on my list Brew.

  I am watching you bass-boy.   Smiley
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Hurt people.....hurt people.   Think about it.
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Re: A Continuous Cluster?  HELP!
Reply #11 - Aug 21st, 2008 at 8:20pm
 
Huh..Huh...Huh...he he he...Linda said "melt your meat" ...he he he Grin
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Vomact
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Re: A Continuous Cluster?  HELP!
Reply #12 - Aug 22nd, 2008 at 9:05am
 
You guy's are naughty.................Hee, Hee, Hee.


The following is an actual question given on a University of Washington chemistry mid-term. The answer by one student was so
"profound" that the professor shared it with colleagues, via the
Internet, which is, of course, why we now have the pleasure of enjoying it as well.

Bonus Question: Is Hell exothermic (gives off heat) or endothermic
(absorbs heat)?

Most of the students wrote proofs of their beliefs using Boyle's
Law (gas cools when it expands and heats when it is compressed) or
some variant.

One student, however, wrote the following:

"First, we need to know how the mass of Hell is changing in time. So
we need to know the rate at which souls are moving into Hell and the rate at which they are leaving. I think that we can safely assume that once a soul gets to Hell, it will never leave.
Therefore, no souls are leaving.

As for how many souls are entering Hell, let's look at the different Religions that exist in the world today. Most of these religions state that if you are not a member of their religion, you will go to Hell. Since there is more than one of these religions and since people do not belong to more than one religion, we can project that all souls go to Hell.

With birth and death rates as they are, we can expect the number of
souls in Hell to increase exponentially. Now, we look at the rate of change of the volume in Hell because Boyle's Law states that in order for the temperature and pressure in Hell to stay the same, the volume of Hell has to expand proportionately as souls are added.

This gives two possibilities:

1. If Hell is expanding at a slower rate than the rate at which souls enter Hell, then the temperature and pressure in Hell will increase until all Hell breaks loose.

2. If Hell is expanding at a rate faster than the rate at which souls enter Hell, then the temperature and pressure will drop until Hell freezes over.

So which is it?

If we accept the postulate given to me by Teresa, (Cheerleader
Captain and Class Valedictorian) during my Freshman year that, "it will be a cold day in Hell before I sleep with you", and take into
account the fact that I boinked her last night and again this morning, then number 2 must be true, and thus I am sure that Hell is exothermic and has already frozen over.

The corollary of this theory is that since Hell has frozen over, it follows that it is not accepting any more souls and is therefore, extinct...leaving only Heaven, and thereby proving the existence of a divine being, which explains why Teresa kept shouting "Oh my
God!!!"

THIS STUDENT RECEIVED THE ONLY "A"

Grin

Vomact
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DennisM1045
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Re: A Continuous Cluster?  HELP!
Reply #13 - Aug 22nd, 2008 at 9:26am
 
An oldie but a goodie!  Thanks for dusting it off.   Grin

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
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Re: A Continuous Cluster?  HELP!
Reply #14 - Aug 22nd, 2008 at 11:19pm
 
Wow... So does the mean none of us will ever stand a chance with Teresa.?? It just doesnt seem fair. Coach bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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worst pain ever
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Re: A Continuous Cluster?  HELP!
Reply #15 - Aug 23rd, 2008 at 7:53am
 
Hi
Really sorry to hear about your experience. I was also on verapamil and it did ABSOLUTELY NOTHING the only thing that works for me is imitrex injectable. Have you tried this yet. It stops my CH's no matter where I am at on the kip scale. Its the only thing that has helped me I am waiting on a referral to my neuro right now so I can get an oxygen tank. I am also taking amitriptyline but I don't think it is working because like yourself I seem to have one long headache many times after the dose of imitrex wears off I'm right back where I started with an intense shadow or a full blown CH. Most times it's to soon to take another dose of imitrex so I just suffer because to much of this stuff can cause heart attack or stroke so I just wait and suffer. Wishing you many PF days
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DennisM1045
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Re: A Continuous Cluster?  HELP!
Reply #16 - Aug 23rd, 2008 at 8:32am
 
Vomact wrote on Aug 21st, 2008 at 5:05pm:
I am taking 600 mg of Dilantin and now 180 mg of Verap.

Originally I didn't think I had anything to offer to this thread.  However I went back over your post and saw the verapamil level.  180mg is an extremely low dose!  240mg is the minimum for CH and often higher doses are required before relief is seen.  Some need to exceed 1000mg.

modified to add: I use 400mg of regular release verapamil and take it 120mg@7am / 120mg@2pm / 160mg@10pm.

Here is some great info provided by Bob Johnson in another thread on Verapamil which lead me to my current use of verapamil.  My Neuro didn't know this stuff until I brought it to him.  However he was smart enough to listen  Cool

--------------------------------------------------------------------------------
-
Quote:
========
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.
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« Last Edit: Aug 23rd, 2008 at 8:36am by DennisM1045 »  

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
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Vomact
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Re: A Continuous Cluster?  HELP!
Reply #17 - Aug 23rd, 2008 at 9:40am
 
I talked to my Neuro's coverage and he didn't want to change the Verapamil.  I have to wait until he gets back on Monday.

I intend to discuss the dosage and the need for a rescue med, like imitrex ASAP.

I have talked about this with my sister , as she's and M.D. and my bother in law.  He is a psycho-pharmacologist.  They disagree about the Verapamil.  They indicated a max therapeutic dosage of 600 mg, however the conceded that everybody is different and  "the dosage that works is what you need".

Thanks,

Vomact

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Re: A Continuous Cluster?  HELP!
Reply #18 - Aug 23rd, 2008 at 1:03pm
 
Vomact wrote on Aug 23rd, 2008 at 9:40am:
I talked to my Neuro's coverage and he didn't want to change the Verapamil.  I have to wait until he gets back on Monday.

I intend to discuss the dosage and the need for a rescue med, like imitrex ASAP.

This makes sense as 2 days won't really matter.

Quote:
I have talked about this with my sister , as she's and M.D. and my bother in law.  He is a psycho-pharmacologist.  They disagree about the Verapamil.  They indicated a max therapeutic dosage of 600 mg, however the conceded that everybody is different and  "the dosage that works is what you need".

Your sister and brother-in-law are looking out for you.  That's great and I applaud them for being in your corner.  However, neither is a CH expert.  Drs Shelftel, Goadsby and before them Dr Kudrow are in fact CH experts.  Their collective clinical advice on therapy should not be discounted by those not expert in the field.

The guidlines in the quote I provided advise titrating up in 80mg steps to find a theraputic level that works for the individual.  My comment on some needing >1g merely gave you the upper bound that some have had to reach in order to find relief.

Verapamil, like many of the drugs we need to use, is not without it's side effects.  Most worrisome of these is heart rythm problems that develop in about 20% of patients on high dose verapamil therapy.  This requires regular EKGs every 6 months along with additional checks whenever a new theraputic level is reached.

My motivation here is to make sure you go about this the right way to get the maximum benefit.  We're all after the same thing here Wink

Wishing you loads of PF time...

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
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