to follow up on my previous posts...my husband's doctor just said he should stop taking the Imitrex injections (and hopefully that will clear up this constant headache he's had for the pats 6 days). He's to continue the prednisone.

Also he's prescribing:
Ativan - I guess an anti-anxiety medicine, but he called it like a pill form of alcohol (that worries me)
Percocet (he said to try to take the edge off of the headache)
Topomax (he said it's the preventive to start now , and the doseage will increase next week)

-He also put in a request for a MRI.
-He put in a request for O2 as well but..when he was talking about it he mentioned nasal canula or mask. And he said it will be at a high-flow rate of 6-8lpm. (Which from what I've read on here, is way too low.)

On the oxygen - we can just get a regular or (I forget the actual terms, sorry) something else to increase the rate, right? or is that completely wrong?

From what I've read here, no painkillers help clusterheadaches. Should he even try the percocet? and does anyone have experience with Ativan?

I had him put in another referral to get a second opinion on treatment, just so we start to get into the system to see another doctor even if it will take a while...hopefully something will work soon. I think I'm going to go ahead and get the welder's oxygen for him though because who knows how long getting the oxygen being prescribed will take.

anyway, any suggestions on the above?

I thought we already gave you the scoop on oxygen.

           Potter

I guess I was just trying to ask specifically if a doctor puts in the request for 6-8lpm, if there is a way to get around it. (I've read so many posts and articles I know it needs to be higher than that but it's been such a whirlwind of information I'll re-read the other posts..).

edit - ok, yep found the post i was looking for about the oxygen prescription:) thanks! i'm going to go ahead and buy another regulator and non-rebreather mask to be ready.

still interested in what anyone has to say about the percocet and ativan...

Krys,

It's obvious your husband's doctor knows little about cluster headaches and it appears he's working out of an old cookbook for treating migraines.

The question "Do you want a nose cannula or mask" and an oxygen flow rate of "6 to 8 liters/minute" tells us he knows little about using oxygen therapy as an acute treatment for CH. 

The Rx should read as shown in the following:

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

You'll notice there's no mention of ativan or percocet in the above EFNS standard of care chart in the recommended treatment of cluster headache.  Ativan and percocet will do nothing to stop a cluster headache.  Percocet is a mix of acetaminophen and oxycodone.  And, as oxycodone is an opiate, it's addictive. At best oxycodone will only take the edge off the pain. 

We've folks around here who were prescribed morphine injections, a far more powerful opiate for their CH.   They still had 6 to 8 CH a day/night and in the end, all that did was make them dependent on morphine.   If your husband thinks CH are bad ask him if he's willing to go through detox/withdrawal and have CH at the same time...  That makes for a very unhappy camper...

As you've already asked for a referral, at least push this doctor for a properly written Rx for oxygen therapy.  The key words are "Oxygen at a flow rate of 12 to 15 liters/minute with non-rebreathing oxygen mask for cluster headache."

If "Cluster Headache" is not specified in the Rx as the condition being treated, the home oxygen therapy folks will balk thinking the oxygen is for COPD and send you back for oxygen saturation levels.

Check your PM.

V/R, Batch

I take ativan for severe anxiety issues.  It makes me real tired after I take it and I sleep for a couple of hours.  This is on a low dose of it.  It doesnt make me high or loopy.  You should not drink alcahol with it you could overdose.  It does nothing for ch.

I also have taken percacet and vicadin at seperate times thouout my journey of trying to treat ch.  I was perscribed high doses 20-40mg of oxycodone which is percacet without the tylanol in it. It helped bring the level of ch down from a 10 to a 7 or 8 but over all in the end I was taking handfulls of pills and getting little relief for the effort.

Oxygen and a preventative and imitrix as a backup incase the oxygen fails is the key in treatment.
I would recomend you find a different doctor who will perscribe what you need and knows more about ch.  Good luck!

Karla wrote on Mar 1^st, 2011 at 3:01pm:

I take ativan for severe anxiety issues.  It makes me real tired after I take it and I sleep for a couple of hours.  This is on a low dose of it.  It doesnt make me high or loopy.  You should not drink alcahol with it you could overdose.  It does nothing for ch. I also have taken percacet and vicadin at seperate times thouout my journey of trying to treat ch.  I was perscribed high doses 20-40mg of oxycodone which is percacet without the tylanol in it. It helped bring the level of ch down from a 10 to a 7 or 8 but over all in the end I was taking handfulls of pills and getting little relief for the effort. Oxygen and a preventative and imitrix as a backup incase the oxygen fails is the key in treatment. I would recomend you find a different doctor who will perscribe what you need and knows more about ch.  Good luck!

I think the Ativan is mostly to lower his anxiety and try to help him sleep..he hasn't slept more than 3 hours a night (total) in the last few weeks..

I'm hesitant for him to try the percocet..I'm just not sure there's enough benefit to taking them when compared with the risks..

Percocet is worthless for CH.  It can also be quite addictive.  Been there, don't want to go back.  Went with absolutely nothing except coffee for almost 20 years because of it.  Some don't have issues with it, but some are able to charm snakes too.

Jerry

Quote:

I'm hesitant for him to try the percocet..I'm just not sure there's enough benefit to taking them when compared with the risks..

Not to mention that it can be a sure fire trigger.

Find a new Doc.

seaworthy wrote on Mar 1^st, 2011 at 5:00pm:

Quote: I'm hesitant for him to try the percocet..I'm just not sure there's enough benefit to taking them when compared with the risks.. Not to mention that it can be a sure fire trigger. Find a new Doc.

We're definitely working on getting a new doctor.

Has anyone mentioned Melatonin to you Krys? That has helped others with sleep. I'm not exactly sure on the dosages but if you do a search on the word I'm sure some other threads will pop up.

Edited to add: Of course if he's using the Activan - and it works - he probably should not also use Melatonin. But if Activan doesnt work, and he discontinues using it, then perhaps Melatonin.

QnHeartMM wrote on Mar 1^st, 2011 at 5:12pm:

Has anyone mentioned Melatonin to you Krys? That has helped others with sleep. I'm not exactly sure on the dosages but if you do a search on the word I'm sure some other threads will pop up. Edited to add: Of course if he's using the Activan - and it works - he probably should not also use Melatonin. But if Activan doesnt work, and he discontinues using it, then perhaps Melatonin.

Yep, he's been taking around 10mg of Melatonin a night.

so i guess he took antivan and percocet this afternoon. the constant headache he's had is still here, the percocet didn't help. and now he is even more out of it than before...and he is dreading another attack...

apparently side effects for both medicines include depression and suicidal thoughts...

He needs to get off that merry-go-round but quick.

Follow Batch's advice. If you can't find a doc that will prescribe O2, get your own from a welding shop.

O2 at 8 lpm will work well for some.  Others have better success at higher levels.

I'm 6'4", 230 lbs. and can abort an attack in less than 10 minutes at 8 lpm, with the attack never getting above a K5 during the abort.

The most important thing is to get the O2, many suppliers use 15lpm regulators, if not you can get your own reg and mask for reasonble cost, if the Doc won't change the RX.

It's all too common for Doctors, Neurologists also, to know limited info about the best treatments for CH. Educating ourselves about this is in our own best interest.

Wishing you the best of luck,  Don

Quote:

Percocet is worthless for CH.  It can also be quite addictive.

I whole-hearedly approve this message above.  You can also add Vicodin, Morphine, as well as numerous other narcotics.  Besides the addiction side of it....it will also cause rebounds froim hell.  Please tell him to stay away from it and as his supporter...get him a knowledgable doctor. 

BobP above knows his stuff and if he says 8 lpm of 02 worked for him I believe him.  HIOWEVER..most of us need more than that.  I started out with 15 and several yrs. ago I recieved a 25 lpm regulator and the difference was astronomical.  I can abort in less than 10 mins. if I get on it soon enough.

I just love it when supporters come ion here trying to get info and support for their spouses.   It would saem you are one of those and I salute you and I hope you know how important you are to him.

   Big hugs to you.   Linda

Krys, I feel for your husband (and you!), I have just been on the whole run-around with a stupid, ignorant neuro and an unknowledgeable (but at least caring) GP. I ended up having to get a friend to STEAL an O2 tank so I could try it. And I've used so many painkillers this last 4 months - paracetamol, ibuprofen, codeine, tramadol - all by the truckload - that I'm sure my liver and kidneys would be shot, with only the tramadol making a slight scrap of difference.

So yeah, take everyone's advice, do whatever you need to do to get your hubby some O2 and the equipment that goes with it. I'm not great with my technique, and I often get re-hit after an hour or so, but at least I get some respite and the re-hits are milder.

Good luck and I hope your hubby realises that he is VERY lucky to have someone so caring and supporting, willing to carry some of the burden for him.

thanks for the advice, everyone. we're going to try to get an oxygen prescription pushed through as fast as possible, but i think i'll go ahead and order the welders oxygen for him since we're not sure how long it will take to go through. (it has to get an approval in tricare somewhere..so..who knows. i'd rather be safe and go ahead and get the welders oxygen.)

he, knock on wood, hasn't had one of the more severe attacks in the last almost 48 hours now. (he's in the hospital now, so i'm not sure about the last few hours, i hope he hasn't had one though.) the oxygen has lessened the pain of the constant (maybe chronic) headache he's had for the last week though..some of the abstracts i've read were about something similar, cluster-like headaches plus a chronic headache. maybe this is an ignorant question (or maybe exhaustion that i don't remember) but is it normal for oxygen to help headaches that aren't cluster headaches? it comes back shortly after he stops breathing in the O2...

This may be an ignorant answer (because I'm new too!!) but my understanding is that no, it doesn't help other headaches. I base this on 2 things - 1) my headache specialist seemed to put a lot of weight on the fact that I had tried O2 and it worked, when he made my CH diagnosis.  2) I had a spinal tap (for something unrelated) a few weeks ago, and had some headaches that were related to that. They were different headaches (when I bent over, coughed etc and would then linger) but just to be sure, I tried the O2, which did absolutely NOTHING.

Plus my understanding of the whole vascular constriction thing - other headaches don't have the same physiology that would react to O2 in the same way (or do migraines?????)

Anyway.... I'm sure a smarter person will be along soon. In the meantime.... don't take my advice too seriously.... but for now I will pretend I am really really smart.....

I've heard mention of using O2 for hangover headaches.

Bob,

It doesn't work...  and I won't embarrass myself with the number of times I tried it as a young fighter pilot. 

That's why it didn't take long to learn and respect the time proven adage... "No smoking within 50 feet of the aircraft and 24 hours bottle to throttle."

When the jet is moving at 10 miles a minute and the brain at 3, you're so far behind the jet you're just along for the ride instead of having more fun than you can imagine with your clothes on...  ;)

Take care,

V/R, Batch

Some have posted that O2 has been helpful with their migraine headaches. lance