I've decided to finally come from behind the laptop and post for the first time.  My latest cycle has started, and this one is kicking my butt.  I feel as though that maybe my family doesn't really "get it".  That maybe they think it's just a "headache", and I'm either a wuss or over exaggerating.  But I don't really think I've really come to terms with this whole thing either.  I still think there's something in the back of my head that believes it's not real.  Which I guess is why every time it comes back, I'm always surprised. "Huh? Why the hell is my head exploding??"

My doctor is lovely, although has not officially diagnosed me with CH yet.  Mostly because he hasn't done much research on it.  However, I'm convinced of it...I mean how many headaches make you want to bash your head through a wall AND happen exactly at 11:15 EVERY NIGHT for three months!

However, with the non-understand of my doctor also comes the Neurologist who always seems to be running late for a lunch date.

I'm currently on:  100 mg of Topamax.  A 5 day cycle of Prednisone.  12.5 mg of Axert for abortive.  I'm lucky that the Axert does work about 65% of the time. However they are very expensive, and insurance will only cover so many in a given month, so I have to use them sparingly.  I am thinking however that the Topamax is a bit of a joke though, since I have had an episode every night since my cycle started. (11 days in)

My head just HURTS all day, and then at night I find out what REAL hurting is. I'm only 11 days in and I'm already so tired. And pissed.  I don't want to be this pissed. Sigh.

I just wanted to say hi I guess.

Hi!

Welcome to the board Kerrie. You are right, your GP has not done much research.

The topamax is a powerful drug and doesn't seem to be working so if it was me, I would quit taking it. But thats up to you and your doctor.

What I WOULD do is tell him that you want a prescription for 02 with a regulator of at least 15lpm with a non-rebreathing mask. That knocks down a ha within 5-15 minutes for most.  I would also ask for a prescription of Imitrex injector. The pills are too slow.

That is the first line of defense when you are waken up with them. There are many other things to try such as preventatives to take before the ha starts.

Good luck and read all you can on here and then go back and see your doc.

PS....you probably need to get a proper diagnosis from the neuro to make sure that is what you have but it certainly sounds like clusters.

Oxygen is perfectly safe if you use simple precautions.  Don't use it around fire or smoke around it.  I've used it (off and on) for a number of years and the worst thing I've had happen was I dropped a tank on my toe.  

As for how often you have to refill tanks it all depends on the size of the tank, your flow rate, and how long you have to use it.  I know that sounds like a smart alec answer, but it is not intended to be.  When I upped my flow rate from 15 lpm to 25 lpm I actually used less oxygen than I did at 15lpm because I was able to kill a hit in much less time, hence I used less O2.  YMMV (Your Mileage May Vary)

I can't answer the Botox question.  Some have reported success, but I think the jury is still out on this one.

I've never used Imitrex, so I can't answer about that either.  I never had insurance that would cover enough to bother and it is way to expensive for me to do it out of pocket.  Until we were able to get O2 recognized as a mainstream treatment for CH Imitrex was about all that was available, so it was used, and still is, quite frequently by many clusterheads.

Please don't feel badly about "rattling on and on".  Very often that is what gives us the detail needed to be able to give you meaningful help.  Sharing information is never frowned on.  If you start whining we might get after you for it, but what you are doing is not whining!

you don't have your location in your profile, so it is hard for us to make any recommendations for good Headache Specialists, which is what you need moreso than a run of the mill Neuro.  Most neuros really don't know all that much about HA, let alone something like CH.  If you click on the "OUCH website" button on the left you can find a list of Drs that are recommended by clusterheads.  They are not endorsed by OUCH, just recommended by patients.  That might help you find some real help.  It doesn't sound as if you have a lot of confidence in the Neuro you have been trying to see.

All the best,
Jerry

Great luck getting an appointment so quick. I hope the neuro can answer all your questions and give you the help you need making the effort required to get there and back worth every minute.

What a difference a day makes.

There is such a feeling of validation when someone, especially a doctor, GET'S IT!.

Met the new Neuro yesterday, and he told me within 10 minutes..."Yes, you are a CLASSIC Cluster Patient."  He went on to tell me that once during residency he met a patient that walked around with an Imitrex pill in his shirt pocket.  The patient told him, "I never leave the house without this pill.  Before Imitrex, I never the house without a gun."

He said from that day forward it changed his view on people dealing with migraines/headaches.

I asked every question in my notebook and then some. Even though I have NO IDEA if our course of treatment is going to work, I at least feel as though we are moving forward...we're going to try to manage it.

So, by the time I left:
I got a nerve block (which really didn't do much - still had a night episode last night)

*10 day course of high prednisone
*Verapamil (eventually will work up to 3 pills a day @ 120 mg each)
*Imitrex injections (had to use one last night for the first time.  That was weird as crap.  I almost instantly felt like Wolverine.  All my limbs felt really heavy.  Very strange.  But eventually very effective)  Big Fan of the Imitrex Injections Y'all!
*I also got a prescription for 02.  The script reads:

02 for inhalation
10-12 litres/min
NRB mask
Portable Oxygen Tank

Is that good? That's what I wanted right? I wrote all that stuff down - and I did say to him I wanted 15...but that's what he gave me. I was a bit overwhelmed with the whole OH MY GOSH HE'S ACTUALLY GOING TO TRY TO HELP ME!

Was hoping you guys could point me in the right direction on the O2.  I've read the whole Oxygen info site....Did I miss something? Not entirely sure now as to how to actually GET the oxygen.

Y'all are awesome.  Even though my head went Super Nova last night...I'm still in higher spirits because at least I'm stepping towards managing.

My suggestion on the O2 is to get the script fill then go to Ebay and find a regulator that will allow you to go up to 25lpm or more.  If you don't need that much you don't have to go up that high.  Then you can determine what level works for YOU.  Some are able to get relief at lower flow rates, but the majority of us need higher flow rates than that.  I know 15 lpm worked for me in 15-20 mins and I quit using it because the slight difference I got with it wasn't worth the hassle.  I was convinced to give 25 lpm a try and can now knock out a hit in 5-8 minutes.

All the best,
Jerry

I feel like I'm monopolizing everyone's time...But I feel like I've hit a road block, and I don't have enough knowledge to help myself.

The Pharmacist and I are at a bit of a stand still on my Imitrex injections.  I got two "samples" from my doctor...but 2 "refills" from the script.  However, from everything that I've seen and googled...You can't REFILL these damn things!  (Sumavel Dosepro)

She initially tried to give me needles and vials!!! I knew that wasn't right!  I've left a message (early this morning) for the Dr's PA...but with the weekend coming I'm getting nervous that I'm only left with one injection....and three days.

Second: Oxygen.  Easier Said then done y'all!  Turns out the ONE thing the doc didn't do was write my O2 saturation level on the script. No one will give the oxygen without it. And since I can't even get her on the phone for the above injections, can't imagine how I'm going to get someone to write an additional script for whatever my O2 saturation was.

Really scared for the upcoming weekend.  Nothing's ever easy is it!?! 

The devil isn't knocking yet tonight.  Keeping my fingers crossed.

kerrie_m wrote on Oct 20^th, 2011 at 7:30pm:


Oxygen saturation has nothing at all to do with aborting a CH!

Does the script say that the oxygen is for the treatment of CHs?

"My preference is Kudzu, an over the counter herbal that worked better for me than the CH cocktail of Verapamil and Lithium, and without the side effects."

@ Callico...how are you taking this?  My CHer is on it also, but the Dr said to try it.  Didn't say just how.  We could not get it anywhere in our area!  I ended up ordering it on line.  A pretty good price too.

Topamax did terrible things to my Cher's memory.  He lost his short term memory as he was on it for too long.  He is slowly getting some memory improvment, but lost many days.

"Oxygen is perfectly safe if you use simple precautions.  Don't use it around fire or smoke around it."

When my Cher's Neuro knew he was a smoker, she would not prescribe it.

Glad you found us here though. Sounds like you have a good start going!  Don't give up!

Beth

"When my Cher's Neuro knew he was a smoker, she would not prescribe it. "

That is totally bogus!  Many CH'ers smoke, but use O2.  One has to use good sense, but it is not unsafe to use just because one smokes!  If the Neuro won't prescribe it buy a welding tank and set up your own system.  It is cheaper anyway.

Jerry

Hi All -
Managed to figure out the imitrex injections...Turns out the pharmacist kept trying to fill the Sumavel DosePro that the Doc gave me in the office as the "freebie". 

The oxygen STILL isn't in home yet, but we are making some progress in that area.  A really nice lady at the hospital, I just happen to be there for a follow up MRI, took me to a nurse after my scan and they took my O2 stats.  Hoping to get the O2 in house before weeks end. 

I'm coming to the end of the prednisone cycle, and I can already tell it's wearing off.  I haven't a full blown CH for almost five days - But now that the Pred is wearing off....The shadow I woke up with today is a monster.  Really hoping it just stays as that.

Do you guys usually take your Verapamil mornings or evenings?  Since almost all my CH come at night after I go to bed - would it make more sense to take when I get home from work? Or space out during the day, maybe?  Just wondering what you guys do.

My 7 year old daughter, at the bus stop the other day, told me she was sorry that Mama get's such bad headaches.  She said she wished she could kiss them away and give them to the earth worms...Apparently she REALLY doesn't like worms!  I told her that if the earth worms had Mama's headaches - we would have exploding earth worms all over town.