I don't want to let go of who I am for a month or so just because I can't function when I have a CH.

This cycle I'm on now started last Thursday. I've missed 7 classes and 3 days of work already. Although, today I had taken off previously for a dentist appointment. Yesterday I didn't have any headaches but I was too scared to leave my house because it hurts so bad and depending on where I am, most of the time I can't leave, and if I am able to leave, by the time I get home it hurts so bad that all I can do is cry and wait for it to go away.

I can't keep missing class and I really can't keep missing work, I have bills to pay. It doesn't help that I work at a daycare and just the thought of having an attack at work makes me want to scream.

I went to the doctor again today, and he gave me a prescription for verapamil and imitrex injections, and I also have oxygen (due to my dad being an EMT) but I'm still so scared. I don't want to even go to my dentist appointment in a couple of hours because I'm afraid that I'll get a headache and I won't be able to get to the oxygen fast enough and I'll have to spend another two hours of my life crying and asking WHY ME!!

I don't know how to put these CHs behind me and still live my life. I suppose that after a few days - a week of taking the verapamil, my headaches will decrease (GOD PLEASE!) but my next fear is that I run out of oxygen and my dad can't get anymore quick enough or that I use all of my imitrex injections, or perhaps I give myself rebound headaches... ughhhh!!!!!!!!!!!!!!!!!1

and what do I do when I am in class and I feel an attack coming on? Do I just pull out my injection and stick myself right there? It's not like I can carry around my oxygen tank and use it whenever I need it either.

I just need help. I don't know how to deal with this reasonably. I got a headache on my way home from the doctors today and I cried the entire way, and when I got home (probably about 20 minutes after the headache started) I took a Trexamet and immediately went to the oxygen. It helped but it still hurt so bad and I still end up crying and wishing I were in other places, preferably Heaven.

I'm only 19, and I really don't know how some of you people have done this for 20+ years, I'm on year 4, espisode 4. I'm sooo sick of it already.

I don't know what to do.... I know this post sounds pathetic and please beleive me when I say that I'm not trying to get a sympathy vote, I just really need help. My headache ended about 30 minutes ago but I am still crying. I don't want another one to come. :(

First off, your post doesn't sound pathetic.  You're scared.  That's understandable.  We've all been where you are at some point in all this.  

For me it was the last three cycles that lead up to my diagnosis and finding this site.  After that I got things under control.  You will too.

I get hit, I rely on my weapons to kill it and then I go back to living my life.  I'm a successful software engineer and father of 10.  I use O2 anywhere I am.  Work, home, kids activities, traveling, where ever I am I always have an O2 tank or injections with me.  

How is the Oxygen working out?  Did you discuss it with your Dr?  If so, what was his reaction?  

I don't think relying on your Dad for an O2 supply is going to work in the long term.  You really need a perscription.  

If the Dr you are seeing won't give it to you then get a referral to a Neuro.  Helpful hints were provided on finding a good one in your other thread on the meds board.

How much Verapamil and what type did he perscribe?

Did you discuss a steroid taper to hold off the attacks while the verapamil ramps up?

I know ... lots of questions.  But in the answers lies relief and the keys to the rest of your life.

[smiley=hug.gif]

-Dennis-

Hi Kim,

No way do you sound pathetic.  Dennis is correct, we have all been there.

The good thing is, you know what you are dealing with and you are on the way to getting some help.

How do you administer the oxygen?  Have you got a non-rebreather mask?

You hang in there.  All the people here along with your Doc will get you through this


Dennis
  father of 10.
No wonder you have headaches   :)

                                            PFD's
                                              JPC

The doctor said no to the oxygen, he thinks my insurance won't cover it and its really expensive... so I don't know what to do about that.

I have a appointment with a headache specialist February 10th, but thats a long time from now... I don't know what to do until then.

the verapamil. He gave me 60 240mg pills, with 5 refills. That should be enough right? How long will it take for it to start working?

I didn't know about the steroid taper, is this a good thing to have? I got a steroid shot on Tuesday but I had an attack today.

I used the oxygen today, and no, i don't have the right mask but the way I used it worked. There was no outside air getting in.

I'm really just so lost.... I can't do this for another month or so.

Verapamil takes a 10-14 days to take effect.  That's the reason for the steroid taper.

I took prednisone for 10 days along with the Vrap.  The Prednisone works almost immediately and gives the Vrap time to start working.  I'm not sure what the steroid shot is.  I'm just letting you know what worked for me.

With insurance, oxygen was costing me $26.00 a month.  If you don't have insurance, you can O2 from a welder supplier.  Someone here will be along to help you out with that if you need to go that route.

                                           Good PF luck To Ya
                                                 JPC

Oxygen works for you.  It's cheap so quit crying and get the O2.

       Kinder gentler Potter

Potter can be a bit brusque...he means well. ;)

When I was buying my own oxygen, it was costing me $4.25 a month to rent the tanks, and $11.00 each time I had to refill them. It's really pretty cheap, especially compared to some of the other medicine options.

We've all been where you are now, it's a crummy dark place to be. There is hope, it does end, you will regain your quality of life again. just don't throw in the towel, you have to keep the fighting attitude up. Attitude is a large part of beating this thing. Hang in there.

Joe

You need to stop trying to hide from the CH's and tackle them head-on. What regulator and mask do you have for the O2 tank? What size tank? Having the right setup is critical to your success.

If you've read the "oxygen info" link on the left, you can answer these questions.

Guiseppi wrote on Jan 29^th, 2009 at 8:34pm:

When I was buying my own oxygen, it was costing me $4.25 a month to rent the tanks, and $11.00 each time I had to refill them. It's really pretty cheap, especially compared to some of the other medicine options.

When I was buying my own medical O2, each E tank refill was $14.75 and there was no tank rental. Welding O2 is even cheaper!

Guiseppi wrote on Jan 29^th, 2009 at 8:34pm:

Potter can be a bit brusque...he means well. ;) When I was buying my own oxygen, it was costing me $4.25 a month to rent the tanks, and $11.00 each time I had to refill them. It's really pretty cheap, especially compared to some of the other medicine options. We've all been where you are now, it's a crummy dark place to be. There is hope, it does end, you will regain your quality of life again. just don't throw in the towel, you have to keep the fighting attitude up. Attitude is a large part of beating this thing. Hang in there. Joe

Joe is right. It's easy to be depressed with this, but, you gotta fight it! Instead of being depressed about the pain, I highly reccomend you get pissed off at it.

Here's how I view it.

How dare this disease try to take over my life? How dare it impact my family? What gives it the right to make me so miserable?

It has no right to be here, and just to spite it, I'm going to live as normally as possible in between hits. This means, while I have to have preventatives and abortives, it's not going to make me feel uncomfortable.

I don't care what I have to do, I'm going to go out and do what I can, and when a hit comes, I am going to deal with it. When I recover, I will get back to what I was doing.

And no amount of pain the beast can inflict upon me will make any difference in that. Yes, it's horrible while it happens...but I refuse to let the fear of it impact the GOOD times I can have when I don't have a cluster.

If your doctor is reluctant on the oxygen, I'd say push for it if you're worried about your dad not being able to get more. Tell the doctor you'll fight the insurance if you have to. I'm pretty sure a lot of people on here could tell you exactly how to go about fighting insurance for it.

You're not alone. *hugs* I know it seems dark and horrible right now, but it WILL pass. The hits DO end.

If you're worried about work, you could try explaining to your boss(es) what is going on, and about needing to be able to slip off to use your oxygen, or imitrex at times. Same with school, you might be able to talk to your teachers about it.

Life does not have to end because the beast is in it.

PFDAN
Mystina

I have an E-tank. I have a nasal cannula, only temporarily until I get my mask that I ordered... but I use it in my mouth and that works well. The regulator is by life support products inc. It has the options of 1, 2, 4, 6, 12, 15, 20 and 25LPM.  

My dad told me today not to worry about the oxygen. He said he can get it anytime... so I can stop worrying about that.


Thank you Marc, Mystina, Joe... even you Potter.  :P

It really is pretty scary and just about everyone here has been where you are.  The thing is, they ARE here.  And some of them started having CH in their teens and are now in their 50's and better.  They didn't let Beasty stop them from living.  You can do it.  

Try not to panic.  It makes it worse.  You can take your 02 anywhere you need to.  Same with your injections.  Lots of folks do.  And the people that are chronic do it every single day.  Not just a few weeks out of the year.  

Take a deep breath, get a grip.  You'll be ok.  And you came to just the right place for help and support.  ;) Remember, we've been there too.
Tabitha

Kim D wrote on Jan 29^th, 2009 at 11:18pm:

I have an E-tank. I have a nasal cannula, only temporarily until I get my mask that I ordered... but I use it in my mouth and that works well. The regulator is by life support products inc. It has the options of 1, 2, 4, 6, 12, 15, 20 and 25LPM.   My dad told me today not to worry about the oxygen. He said he can get it anytime... so I can stop worrying about that. Thank you Marc, Mystina, Joe... even you Potter.  :P

Great! Don't be afraid if you have plenty of O2....  It's not a miracle for every single person, but I'm willing to bet that you won't be crying anymore.

Hi Kim,

My advice is to plan ahead. Make sure you have plenty of treaments/meds so you don't run out say over a we/end.

Learn the early warning signs and get treatment going early.

Get a mind set that you will control it (not the other way round) and enjoy life the same way as everyone else when you are PF.

Read up on everything you can get your hands on. Discuss ideas and questions with CHrs and don't expect Doctors to have all the answers.

Take optimism, don't accept depression.

Finally, when you get a breathng space, have fun.

Marc, (made me laugh) think it was an unintentional pun 'stop trying to hide from the CH's and tackle them head-on'.

Ellick

Hey Kim,

Hang in there.  We know how spooky cluster headaches can be until you get a handle on them.  You've already received some excellent advice from the old hands that know the ropes.  Here's a little more for you.

IMHO, your doctor is blowing smoke over not prescribing oxygen therapy for you because of insurance limitations.  He's either sadly misinformed or hasn't done his homework...  

Even Medicare covers oxygen therapy if the prescription is written properly.  I've been using high flow rate oxygen therapy at flow rates much higher than 25 liters/minute for the last three years with no problems and I've been able to abort all my attacks without taking any other abortives or preventatives.

In order to avoid needless delays and ensure your claims for insurance coverage are approved so most home care oxygen providers will honor your prescription for oxygen therapy, it’s very important that when you see your doctor or neurologist about a prescription for oxygen therapy, that it is written so that it complies with existing rules stated in the Medicare Carriers Manual, Part 3, §4105.5 shown below.

“A prescription written by the patient's attending physician who has recently examined the patient (normally within a month of the start of therapy) and must specify:

•      A diagnosis of the disease requiring home use of oxygen;
•      The oxygen flow rate; and
•      An estimate of the frequency, duration of use (e.g., 2 liters per minute, 10 minutes per hour, 12 hours per day), and duration of need (e.g., 6 months or lifetime).”

As you can see, it is also important that the prescription specifically states “cluster headaches” as the medical condition being treated.

Accordingly, your prescription should look like the following:

"Oxygen therapy with a non-rebreather mask as an abortive for cluster headache pain.  Administer at onset of attacks at a flow rate of 12-15 liters per minute for up to 20 minutes per hour, up to 12 times per day.”

The nose cannula is useless at any flow rate above 7 to 9 liters/minute unless you stick it in your mouth.  I would get a good non-rebreather mask with a 3-liter reservoir bag, hook it up to the regulator, crank the flow rate to 25 liters/minute and start huffing and puffing.  You'll be amazed how fast this will abort your cluster headache attacks.  Once you've done this a few times you gain the confidence of knowing YOU are in control and not the beast.

As already noted by others, if you're having more than 3 to 4 attacks a day you'll need more oxygen cylinders on hand.  You're money ahead to get at least two or three M-size oxygen cylinders for use at home to go along with your E-size cylinders for use away from home.  Check your email.  I sent you some additional info on how to do this with one regulator.

Take care,

V/R, Batch