So this will be my first cycle trying treatment.  I was officially diagnosed post cycle last year.  After 4 emergency room visits, 3 trips to the neurologist, and too many to count to my doctor.  A brief history.

I've had "headaches" for 6 years now.  They started in the spring, when I have seasonal allergies, always on the left side of my face, stabbing "ice-pick" pain along my cheek bone, radiating up to my eye, down to my teeth, back to my ear sometimes.  Red tearing eye, drooping face on the left side, nasal congestion on the left side.  Well my wonderful Army medical system said it was sinus infections for 4 wonderful years.

So finally last year I put my foot down, oh, and they also skipped spring and hit in the fall, saw the neurologist, and found out about CH.

So this year when the first shadow pain hit the neurologist prescribed Topamax (tapered up to 100mg twice/day) Imitrex (Injections) Oxygen 4l on onset.  Oxycodone

Has anyone had any luck with this mix.  

James

oxygen at 12 to 15 lpm.  That's the scoop.

                   Potter

Funny thing is the canisters came with the nasal cannulas instead of high flow mask.  I have to call the doc to fix that one.  But I do have the machine for the house and canisters to take to work.  I'll try the higher rate once the true CH hits, still just shadow pain.

Jwchestnut wrote on Oct 9^th, 2008 at 5:00pm:

Funny thing is the canisters came with the nasal cannulas instead of high flow mask.  I have to call the doc to fix that one.  But I do have the machine for the house and canisters to take to work.  I'll try the higher rate once the true CH hits, still just shadow pain.

Cannisters?

Cylinders, sorry.

drop the oxycodone...YIKES!

best,

jon

Quote:

Oxygen 4l on onset.  Oxycodone

In fact...........drop the last 2.   4 lpm does squat for CH.  As does Oxycodone.   Take the narcs when you just had a tooth pulled, or after surgery and then put it in you medicine chest..for some other thing,  like that.  


Get a non-rebreather mask (they sell for like 3 to 5 dollars, a regulator that goes to at LEAST 15 (25 is better)   read everything you are able to read here, ask questions and then go back to that Dr. armed to the teeth with amunition.

   WE  need   to  educate...our ...Dr.s   !!!!!    (spaces added for emphisis)

We will help you all we can.  We've been there, done that, and we may save you a lot of pain and time.

  Linda

if you have the oxy.....flush em' down the toilet. They are pretty worthless with CH and highly addictive

kevmd wrote on Oct 10^th, 2008 at 11:02am:

...flush em' down the toilet. They are pretty worthless with CH and highly addictive

While I agree with the sentiment, I gently remind all that unwanted meds should be returned to a pharmacist who'll dispose of them in the proper manner, without risk to others and the environment.

James,

lots of luck with your treatment, I hope that it works for you. :) Oxygen has helped a lot to ch sufferers, so I'm glad that your neuro knows about that.

My own experiences from topomax are not that encouraging, but I do know that it has helped others here.

PF days your way,
Sanna

jon019 wrote on Oct 9^th, 2008 at 9:00pm:

drop the oxycodone...YIKES! best, jon

I'll second that.  Narcotics only destroy your liver with absolutely NO cluster relief.

Okay, so I understand the overwhelming negative response to the narcotics.  But after trying them, I do believe they take the edge off a bit.  The difference between the normal screaming and pacing around the house, and just sitting on my bed suffering.  Of course this was a higher than recommended dose, 2 tablets rather than one, and taken as soon as I felt my CH start.  Knowing that your body adjusts to narcs, I recently had back surgery, I know the effectiveness of this treatment will wear off.  But it's worth it for a few at least.

The reason we are against the narcotics is that they are meant to give relief for pain that is expected to be short-lived.  They do help, but should only be used as a last resort, not as a primary treatment.  What we have is not short-lived.  The danger of narcotics is that they can cause rebound headaches, are not great for your liver and they can be addictive.  Being addicted to these medications changes who you are and although they do help relieve the pain, they cause a lot more problems than they fix if they are taken long-term.  Most physicians will prescribe the narcotics right away because it is the way things are done in the system they are trained in.  If you can find an alternative therapy that works, use it - it is a far better choice.

Kushka

So it's been a few weeks.  Time for an update.  The topomax seems to be working well.  I seem to be pain free but still feel what could be best described as shadow pain.  I do get what feels to be an attack starting now and then, but I hit it with Imitrex and O2, got the Doc to up the dose to 15LPM and change to a high concentration mask.  I notice that I get allot of tingling on the left side of my face (the side associated with my CH) throughout the day. Usually around my cheek and eye.  Has anyone else that topomax is helping noticed this?  Anyway, if this is the worse I have to deal with for the rest of my cycle, should be another month to go, I'll deal with it.

Cheers

Yeah, Tingling is a common sympton with Topomax.  Glad to hear it's working for you.  Keep a eye out for an increase in stupity :)