hi my wife has been suffering from clusters for 18 years now in a periodic condition and she is now 30 years old. for many years her gp just said it was migraines until a couple of years ago when we eventually ran out of patience and went to the hospital to get a second opinion. it was at that point we met a neurologist and he handed us a sumatriptan injection which was an absolute godsend as it was the one and only thing we have used that killed off an attack within 5 minutes of using the injection. since then she has been advised to take verapamil as a preventative measure to break her cycle which generally happens around the end of feb each year lasting for up to 3 weeks where she can have anywhere between 1 and 4 attacks a day.

so last november she began to take 160mg of the verapamil each day which she continued to do until around the end of june this year and it seemed to have worked so again at the beginning of november this year she again started with 160mg per day to break next years cycle yet around the start of this month these evil attacks started without warning or notice.

whilst we do still have the sumatriptan injections to take away some of the attacks if she has anymore than 2 attacks in any one 24hr period we are again back to where we were 3 years ago with no way of stopping the pain and she is forced to endure what i can only imagine to be a horrific pain .

so i'm hoping that someone out there can give us some advice on any other alternative treatments for the pain or even a preventative measure to try and keep this beast at bay. also has anyone out there ever gone over the advised maximum of 2 sumatriptan injections in any one 24hr period as there are times we have been so close to doing it ourselves but the fear of the unknown prevents us and forces my wife through another agonising few hours of torture.

i do realise that my wife's condition is merely a drop in the ocean compared to some of the horrors I've read on here but to me and more importantly my wife this is a devastating time of the year for us and i just pray that somewhere out there is the answer to all ch sufferers for a pain free life.

thanks for listening

danny 

Danny,

First welcome to the the message board. 

There is so much to all of this so the first piece of advice I will give is to read and search this site.  So many people have shared so many valuable pieces of information. 

To answer your question about the Imitrex or Trex.  I am a 32 Y/O Male and am currently in week four of my every other year cycle.  On two or three days this cycle I have taken a neurologist approved 20 mg of subcutaneous Trex.  That is 5 4mg shots in 24 hrs.  What I as well as others have found is that the 6 mg injectables are more medicine than is really needed.  I stockpile in the off season and store it in the fridge as my insurance will only fill 6 individual doses per month. 

This cycle however I was able to get a precription for 6mg single dose vials and a bunch of syringes.  I than can utilize a more exact form of the imitrex tip listed on the left of the screen.  I then also dispense my remaining 6 mg stat dose shots into the vial so that I can more easily administer about 2 mg of trex which still effectivly kills the HA in about 7 to 14 minutes. 

I still have several doses of the 4 mg stat doses filled as they work well when I am traveling or unable to sit down and pull out syringes. 

Trex asside the second or in many cases the first HA abortive is o2.  Oxygen at a high flow rate of 15 Litres Per Minute or more does stop the pain in as little as 5 to 7 minutes.  However it is difficult and can be expensive to get what is needed to acomplish this.  I have a prescription for o2 and have purchased my own regulator from Harbor Freight that can deliver way more than I should ever need and the o2optimask and am seeing great results. 

See the Oxygen info on the left of the screen.  It is well writen and spells out the different options there. 

There is also alot of buzz regarding Batches 123 days pain free regimin.  I am also taking it as well.  That is the link provided by the previous poster.  It has not completely stopped all of my HA's but may be responsible for a dramatic reduction.  Either way it is all vitamins and minerals that cant hurt either way. 

I personally cannot live through a full attack and with the tools and knowledge I have gained of the last 10 years of dealing I dont think I will have to.   I was introduced to Imitrex in exactly the same manner as you,  by an ER Dr that basically said try this.   

Probably the most important thing to do is to find a good neurologist that is a specialist in headaches.  The OUCH website has a list of recomended doctors.  I personally found my neuro on that list and have found him to be very helpfull and willing to try just about anything to get the pain to stop. 

Please also remember that the information provided is typically personal experiences in dealing with this disease.  I am not a doctor and you should again find a good neuro who is willing to communicate regularly with you about what is happening and what your taking. 
 
I hope this information is what you were looking for.  Please let me know if you have more questions.  And good luck with your wife. 

Eric

thanks for the advise guys, hopefully we may get some joy from this, i did however neglect to mention that me and my wife are from the UK so our health care system differs somewhat to that in the states so i'm not sure how much of the advice/info transfers into our system. thanks again and any other info be i advice or suggestion are always welcome so that one day maybe my wife can have as close to a pain free life as possible.

as another quick question, i know a vast majority of ch sufferers are men but have any of the female sufferers experienced a total remission of any clusters whilst being pregnant as when my wife was carrying both our children the cluster cycle delayed until a couple of days after she gave birth which has made me wonder if there is some sort of hormonal connection with the beast.

160mg of Verapamil is extremely low dosage for CH treatment. 

The Imitrex tip on the yellow tab-left side your screen should help conserve Imitrex injections. 

Hyperventilating 100% 02 is the safest and least expensive abortive treatment.

Depending on the amount of Verapamil dosage, too many energy drinks may be harmful due to the cardiac interaction. 

Plenty of info to read, ask questions and don't give up on being her supporter, she needs you and you are wonderful to stick by her side.