Hello Everyone. I'm new here...I just had a few questions for people. I am 26/m and started getting CH 5 years ago. Until recently I was in remission and PF for 3 years. I am on verapamil right now (120 mg), which worked for me before, but it does not seem to have any effect now and I am averaging 2 hits/day usually between 1-2 hours long. I was just wondering how you guys/girls deal when you get hit at work?

Welcome!

A question first - how many of the 120mg verapamil pills are you taking per day?

To answer your question:
I've been at my job for 20 years (an office job). The people here know to leave me alone if I'm getting hit - sometimes I go outside to pace in the parking lot. I know how lucky I am to have people who will leave me alone during hits and give me a bit of recovery time after them.

What kind of work do you do?

Thanks!

Right now I am only taking 1 120mg pill. I have made an appointment to see my doc again tomorrow to get some sort of abortive and maybe more verapamil.

I am a process engineer and work at a kraft pulp mill in Alberta, Canada.

Trev wrote on Jan 19^th, 2009 at 12:15pm:

I am on verapamil right now (120 mg), which worked for me before, but it does not seem to have any effect now

Hi Trev,

Sorry to see your genie is out of the bottle like this.  

In my experience (and I'm not a Dr) 120mg of Verapamil is a low dose.  Everyone has to find their theraputic level.  Mine is 400mg.

I also didn't have luck with the sustained release formulation and switched to the regular release formulation after Bob Johnson posted this info: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Print it out and take it to your Dr.  Hopefully with this info and the care of a good Dr you can find your magic level again...


Quote:

Individualizing Treatment With Verapamil for Cluster Headache Patients Joseph N. Blau, MD, FRCP; Hans O. Engel, FFOM, LRCP&SE Address all correspondence to Joseph N. Blau, MD, FRCP, City of London Migraine Clinic, 22 Charterhouse Square, London EC1M 6DX, UK. From the City of London Migraine Clinic. Copyright 2004 By the American Headache Society KEYWORDS cluster headache • treatment • verapamil (Headache 2004;44:1013-1018) ABSTRACT 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. -------------------------------------------------------------------------------- Accepted for publication July 19, 2004.

-Dennis-

You want to look into 02.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
all the best
the bb

Hi Trev.

This is taken from OUCH(UK) website and It's written by Manjit Matharu BSc, MRCP and Peter Goadsby MD, DSc-

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Verapamil is the preventive drug of choice in both ECH and CCH. Clinical experience has demonstrated that higher doses than those used in cardiological indications are needed, and dosages commonly employed range from 240 to 960mg daily in divided doses.
Verapamil can cause heart block by slowing conduction in atrioventricular node.
Observing for PR interval prolongation on ECG can monitor the potential development of heart
block.
After performing a baseline ECG, patients are usually started on 80mg three times daily and thereafter the total daily dose is increased in 80mg increments every 10-14 days. An ECG is performed prior to each increment.
The dose is increased until the cluster attacks are suppressed, sideeffects intervene or the maximum dose of 960mg daily is achieved.
It's imperative that you have and ECG before starting the treatment and again before each increase. And it needs to be BP not the slow release. Also we know of sufferers who have got up to 1200mg daily.

Hope this helps

Trev
I take 240mg 5 times aday ,it has to be SR for me ER did not workBut thats just me
take it slow and give it timeto work
work with your noro
keep us posted
PF wishs to ya Happy Pappy

Welcome Trevor,you have found a wonderful home with people that really care.
Wishing you PFD. :) :)

Welcome to the Family Trev;

Over time my doctor has increased my take of verapamil. At the present I take 3-80mg tabs in the morning and 4-80mg at night. Each individual will be different..

I've been on my job for 30 years; and everyone here knows about my CH. There's a letter that I printed from the OUCH Sight, that explains what CH's are all about and I make sure that each new manager & employee gets' a copy. When I'm in cycle (most of the year), I take my o2 tank to work.

If anything I'm over pampered when I get a hit at work.

I'm Praying that the damn old beast will give you some relief very soon.

Peace & Blessing
LadyLuv

I get to work exclusively at home while in cycle.  That is a low dose of verap and certainly wait til you r doc advises you on an increase.   Get some o2.  You won't be missing 1-2 hours of work if you have o2 with you.  You can ask about imitrex injections as well

Welcome aboard but I'm sorry that it's because of this horror that we meet. You'll find some great info here and good advice. On that, here is a technique that worked very well for me. Give it a try and good luck.


                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      

Thanks to everybody for your replies!  :) I saw my doc yesterday and he gave me a presciption for Imitrex. I got my first hit (KIP 9) after filling my prescription this morning, and within 7 min, it was gone! I can't believe that I've gone this long without an abortive...I was just wondering if there was anybody else out there from Canada who has had trouble getting an O2 prescription from their doc. Mine told me that he couldn't do it, not that he wouldn't. Unfortunately I am unable to get in to see my neuro right away as it has been 3 yrs since my last appointment, and I have to go through the whole referral process again >:(....I will probably be done this cycle by the time I get an appointment. I was just wondering if there was any difference between Medical O2 and O2 you would get for welding etc...? If there isn't I'm sure that I'd have no problem getting my hands on a bottle and rigging it up. Has anyone tried this?

There is no difference.  Welder's O2 has to be just as pure or the welds will be contaminated.

wrote on Jan 21^st, 2009 at 2:15pm:

There is no difference.  Welder's O2 has to be just as pure or the welds will be contaminated.

Yup.

I've been using welding O2 since June, but we have members of this board who have been using it for 20+ years.

I don't have any medical advice other than what others posted, but from the what to do about work thing, I would agree with those who said to explain the situation to your boss and others in your department.  I always tell my boss what CH is and that for the next four weeks, I'll be unexpectedly out or have to leave early, and may have to cut back on my workload if needed even.  Since it's an option for me, I also work from home when possible.  If I am at the office and get hit (it's rare, since my attacks are usually before bed, while asleep, or within an hour of waking), I let a few people around me know and try to find an empty conference room or office to sit in or go lie in the car if I drove in that day.  it's better in te car so i can yell too. ;-)

Trev wrote on Jan 21^st, 2009 at 2:06pm:

Thanks to everybody for your replies!  :) I saw my doc yesterday and he gave me a presciption for Imitrex. I got my first hit (KIP 9) after filling my prescription this morning, and within 7 min, it was gone! I can't believe that I've gone this long without an abortive...I was just wondering if there was anybody else out there from Canada who has had trouble getting an O2 prescription from their doc. Mine told me that he couldn't do it, not that he wouldn't. Unfortunately I am unable to get in to see my neuro right away as it has been 3 yrs since my last appointment, and I have to go through the whole referral process again >:(....I will probably be done this cycle by the time I get an appointment. I was just wondering if there was any difference between Medical O2 and O2 you would get for welding etc...? If there isn't I'm sure that I'd have no problem getting my hands on a bottle and rigging it up. Has anyone tried this?

Hi Trev-

Glad to hear the Trex worked well for you.  I have found 2mg work well for aborting a hit as well as the full 6 mg does.  Using less lessens the chance for a rebound, is easier on your body and lessens the cost of an abort.

O2 from med supply places is the same as welding O2.  No script needed, just don't tell them you are going to breath it.  

-P.