The last 6 days of my life sucked.  I have been to the er and had 4 doctors apointments.  I am at the peak of my clusters and just filled up with medication.  I had an attack yesterday and went to the er, came home, and a few hours later the monster was back. I am currently on prednisone 20 mg, verapamil 120 mg,  sumatriptan 25 mg.  I also have been reading alot in these forums and purchased some Bronkaid, Vitamin D3 10,000iu and omega-3 fish oil.  I also have redbull in the fridge and the treadmill out for exercise.   My wife has a cpap machine that I can hook my oxygen to.  However my regulator only goes up to 8.  I have to order the correct regulator, one on ebay i guess. I am now just sitting around miserably waiting for the next attack.  How long is it going to take to see if any of this stuff prevents an attack.   Also can I do something to the regulator to turn it up?

im sorry to hear your having such a crappy fight with the beast.
your verapamil dosage is pretty low, i didn't start finding relief until i stepped up the dose to 360mg per day, and im now at 480mg per day.   it took me 9 days to notice a difference, and 12 days before i stopped getting hit all the time.  i think that is about the norm around here.
if you get a lot of wake up hits, you might try melatonin.  a lot of people can skip the night/early morning hits completely by taking 9mg or so at bed time.(i take 25mg, which is a little high)  its an OTC sleep aid, available at most drug stores and walmart. 

im assuming the sumatriptan is in pill form?  if so, you will find it almost useless with how slow it works.  if you can, try to get the injection or nasal spray.  they work much faster, with the injections working fastest.  i try to avoid using it as much as possible because of the rebound headaches it causes.

in the meantime, read read read and ask questions.  this community is one of a kind, the most helpful i have ever come across.
anyway, i hope you find relief soon!

Welcome to the board. Your verapamil dose is very low, CH'ers go as high as 960 mg a day to get relief, some have to combine it with lithium to get relief.

The pill form of imitrex is about useless for most CH'ers as the pain builds too fast for the pill to have any abortive effect.

Even the prednisone is at a low rate. We tend to do tapers, starting at 80 mg a day, while we wait for the prevent, in your case the verapamil, to build up to therapeudic levels. At 20 mg a day the prednisone doesn't help me at all.

My assumption is your not working with a headache specialist, your regimen speaks to a doctor who knows very little about CH.

For tonight, this has worked for a few. Disconnect the regulator. Run a line from the tank into a 55 gallon trash bag, tape the line air tight. Bunch the top closed with your hand. Open the valve slowly, fill the trash bag with oxygen. Exhale completely, put your mouth over the top of the bag, inhale as deeply as you can, pull your mouth off, exhale. Do this as fast and hard as you can, trying to hyperventilate on the 100% pure oxygen your huffing outta the bag. I think you'll be amazed at the speed of the abort.

Then get yourself referred to a headache specialist neurologist, get yourself an effective regimen. We'll help any way we can.

Joe

Guiseppi wrote on Oct 15^th, 2011 at 8:35pm:


I am a 40 year old washed up carpenter with no health insurance until recently.  I just quilified for the indigent program out here and have an apointment on Monday.  I don't have a primary doctor and the latest apointment were with random people.  The ER doc I seen last night didn't have a clue either.  Anyway I was diagnosed with cluster in 2005 through an ER doctor.  with no health insurance I managed to get through those atacks.  Then about 18 months ago I went through another cluster cycle that lasted about 2 months.  I just took medicine the ER room prescribed.  (treximet).  So until recently I went 18 months PF.  This time around it seems alot worse and my life sucks.  My 5 year old was in tears at the ER with me last night.

Anyway I am borrowing my father n laws oxygen with the slow regulator  I know I need to see a neurologist and get help.  Please don't flame me to bad for what I am about to tell you.  I started having an attack so I cleaned the oxygen tank with peroxide where the tubing is suppose to go turned the tank on and sucked the oxygen like that. My wife freaked out but it worked.  How bad is that for me?  All i know is my cluster is gone. I drank a red bull too 

You won't get a good treatment plan or Rx for needed meds until you can line up a doc who knows headache issues. Two leads: contact you local hospital and see if they info about free/low cost clinics and then explore the second lead for help with meds.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Go back to the first page of this site: Cluster Headache Help and Support › Medications,  Treatments,  Therapies › MEDICATION $ ASSISTANCE: 12 sources=UPDATE

Thanks for all the help and support..  I wanted to start asking questions but i just keep reading and eventually found some answers..  I don't want to jinx myself I just want to say I have had 3 attacks in the last 24 hours.  The kip was at about 6 on all of them and which is way less then before.   Straight oxygen from the tank helped out tremendously for the last 2 attacks. I also have drank 2 16oz red bulls and started running on the treadmill when I felt something going on.  Anyway I am out of oxygen now and scared to death.  Out here in Pueblo on Sunday will be tuff trying to find oxygen.  I don't have the regulator either.  Monday can't get here soon enough. Peace