I am new here and haha its 5:30 am and I have not slept yet.. Anyways this is my 2nd attack of cluster headaches in my life its been about 3 weeks now. After 2 ER visits and 3 doctors appointments I have an appointment with a neurologist at the end of October.
My ? is this what do I say to the neuro? what testing will he do? and last but most important how do I cope with this for another 6 weeks before I get to see him???? I lay down at night and wake up an hour later with the worst pain in my head. My husband says he understands but while he blissfully sleeps I sit up and rock back and forth holding an icepack on my right eye and forehead and have a heat wrap on my neck.
I have slept a combined 18 hours in the past 3 weeks and don't think I can make it through another 6 weeks of this and stay sane.
:'(

I think I should have worded the begining a little differently the haha is my way of coping with no sleep. Its not meant to offend anyone in anyway at all. Just thought I'd post this before someone took that the wrong way. Not at my best at the moment so bear with me.

Welcome. Sorry you had to find us, but glad you're here.

Try drinking an energy drink at the very onset, and slam it down fast. Anything with a good amount of caffeine and around 1,000mg of taurine per serving. This acts as a vasoconstrictor and will help to temporarily narrow the size of the blood vessels in your head.

Also, click on the oxygen info link to the left of your screen. While you may not get a prescription until you see the doc, you and your husband can get you set up on a welder's rig. High-flow O2 (25 liters per minute or more - a flow that supports hyperventilation) through a non-rebreather mask aborts attacks for many of us in mere minutes.

When you talk to the doc, you'll be given some routine tests to make sure your nervous system is functioning properly. He may also order an MRI to make sure you don't have something more insidious, like a brain tumor. They often diagnose CH by ruling out what it isn't.

You'll need to discuss two courses of treatment - preventative and abortive. For the latter, Imitrex, O2, and energy drinks seems to be the most popular. For the former, verapamil, lithium, or topomax are often chosen.

And if you tire of all the drugs and their side-effects, visit clusterbusters.com.

Good luck, and don't hesitate to ask more questions. First and foremost, you need to be diagnosed.

Welcome,sorry you had to find us.

I cant say enough about the wonderful folks here,they helped me sooooo much.You sound like a night hitter just like me 1 hour after falling to sleep I get the beast.Try Melatonin 1 hour before you go to bed,I do 10mg,started 12 days ago and have not had a hit since,sleeping like a baby.It is worth a try,a lot of folks here have had great success with it.Mine worked right away but sometimes takes a couple days.

silentsuffer76 wrote on Sep 10^th, 2010 at 5:50am:

I think I should have worded the begining a little differently the haha is my way of coping with no sleep. Its not meant to offend anyone in anyway at all. Just thought I'd post this before someone took that the wrong way. Not at my best at the moment so bear with me.

I think everyone here knew exactly what you were saying  ;)

Brew gave you a good head start. 

I know it is hard now but take a breath and try to find some energy to devote to reading.  There is lots to learn and all of that information is here for you.

It is going to take some time to get you sorted out.  But have faith that it will happen.  You just need to be persistent and thorough.

Other non-medication things to try are:
o With energy drinks I try to slam it down in one or two chugs.  The quicker the better.  Some folks pour a can into a container and leave it in the fridge to remove the carbonation.  That makes it easier to slam down.
o I find sitting with my face in front of an A/C on high can help.
o Lots of strong coffee - Caffiene is a good Vasoconstrictor.
o Melatonin like Mike suggested.  Take it before bed time.  Go up 3mg a night until you find relief or hit 15mg.  Don't go up beyond that level.
o Hot or cold showers help for some - This is a variation on the ice pack you are already using.
o Vigorous exercise can help relieve the pain

There are lots of tricks.  Unfortunately they don't work the same for everyone.  That's what makes this damn thing so frustrating.  You have to keep trying stuff until you find what works for you.

Now take a breath, you aren't alone.  We'll be here for you.

-Dennis-

I will walk,walk,walk seems to help me,tried the Air condition thing when I was stuck out of town in a hotel,seemed to help.

Hey no bubbles in 5hr energy and seems to help me.  EZ to
Shoot, cause its a shot. Not much caffeine in it, So, If that's
what your looking for then ain't in there.

silentsuffer76 wrote on Sep 10^th, 2010 at 5:36am:

I am new here and haha its 5:30 am and I have not slept yet.. Anyways this is my 2nd attack of cluster headaches in my life its been about 3 weeks now. After 2 ER visits and 3 doctors appointments I have an appointment with a neurologist at the end of October. My ? is this what do I say to the neuro? what testing will he do? and last but most important how do I cope with this for another 6 weeks before I get to see him???? I lay down at night and wake up an hour later with the worst pain in my head. My husband says he understands but while he blissfully sleeps I sit up and rock back and forth holding an icepack on my right eye and forehead and have a heat wrap on my neck. I have slept a combined 18 hours in the past 3 weeks and don't think I can make it through another 6 weeks of this and stay sane. :'(

Hi there and welcome!
You've come to a good place to find help! 

I know I'm sounding trite and all, but sometimes in medicine, the squeaky wheel really does get the grease.  Call your doctor.  Let her know that you simply are in too much pain and having too much life disruption to last another 6 weeks.  If that doesn't get results - keep calling.  And calling.  Be polite, but be firm.  You cannot wait 6 weeks. 

To be frank, I'm a bit surprised that if your doc is even considering CH she'd have you wait 6 weeks for some relief.  Technically, when you review the standard literature that docs train on, a cluster episode is considered a medically urgent situation. 

Did she start no prophylactics at all?  Any O2 or abortives? 

Be a squeaky wheel!!!!!

Also ask about cancellations. Say how you can be there with minimal notice or whatever you need to do to get squeezed in early.

And be nice to the reception staff too as they are the ones who normally get to decide what happens with cancellations, etc.

Brew started you off right.  I can't add anything other than to say you have already gotten the basics covered with all of the responses.  I'm with Boski on the 5hr Energy drinks.  A sixpack at WalMart for about $11.  They are a lot easier on my stomach than some of the others, and as tired as I stay I can usually go right to sleep after downing one.  They will usually work in about 5-8 mins for me.  Won't totally kill a high Kip attack, but will knock it down to a bearable level.  If gotten early will usually knock one out.  Wake-up hits are the hardest to fight because they have already gotten pretty strong before they will wake you.

There is a tremendous amount of info available here, plus you now have a family that understands you and what you are dealing with.  PLEASE feel free to ask questions.  Don't feel like they are dumb or stupid.  You may get some dumb or stupid answers, but the questions are only dumb if not asked.  Besides that, anyone who acts as if they are dumb probably asked them themselves when new.

Jerry

Thanks guys and gals. I went to my doc today again, he put me on
steroids high dose for 3 days then another 10 days. I also got a referal to another neuro who can get me in in 10 days much better.
But I had to take my hubby with me to get this result I think the doc thought I was making this up for attention. Like I want thousands of dollars in medical bills my insurance is horrible and I'm going to be paying for this for awhile.
I have been having this weird burning feeling in my whole head since I took the first dose of the steroid don't know what thats all about but I can already tell its going to be a bad night for me. Fingers crossed that its not.

Oh I had a CT scan of my head this past monday it was all clear. So if they do an MRI would it show things a CT wouldn't? I'm so new to this.
On an up note I was afraid to go back to bed for fear of another bad attack so I stayed up and after it calmed down taught myself to knit lol....
Oh and would a CH cause a pain that seems to shoot straight through from the front of your head to the base of your head in the back that seems to be what happens to me every time like I have a pinched nerve or something.

Quote:

Like I want thousands of dollars in medical bills my insurance is horrible and I'm going to be paying for this for awhile.

Believe it or not, there are people who do just this. It's a psychiatric disorder called Münchausen syndrome. Those affected feign disease, illness, or psychological trauma in order to draw attention or sympathy to themselves.

Nurses often call them "frequent flyers."

Not me lol I don't even like buying anything not on sale I have 4 kids to pay for and better things to spend my money on lol....

You might try sleeping in a sitting position in a recliner for a few nights until you get some oxygen.  It doesn't stop them, but you don't tend to sleep as deeply and don't get into REM sleep which is a trigger for many.  I've done that many nights.

Jerry

silentsuffer76 wrote on Sep 10^th, 2010 at 10:24pm:

ack to bed for fear of another bad attack so I stayed up an... Oh and would a CH cause a pain that seems to shoot straight through from the front of your head to the base of your head in the back that seems to be what happens to me every time like I have a pinched nerve or something.

I know exactly the pain you describe. It lasts a split second and feels like you got shot with a small diameter arrow or something. I get them in between hits and sometimes after the cycles end. I think it might be called trigeminal neuralgia. It is a very strange sensation and I , even though not a doctor could guarrantee it is somehow linked to ch. Hang in there don't suffer silently Yell, scream, cuss, whatever let it out. Fight that beast. Keep up the battle you are winning! Dan

Hey SS76,

It's clear taking your hubbie along bumped you into a steroid taper and a new neuro so lead off with your longest and strongest suit so to speak.

Call the PCP who prescribed the pred taper and ask for a prescription for oxygen therapy.  If he can prescribe a potent steriod, he can prescribe home oxygen therapy.

The prednisone taper is a short-term "transition" preventative that is typically effective for better than 60% of cluster headache sufferers and should prevent most if not all of your cluster headaches if you fall into the 60% grouping.  This will only last while you're on the taper and tapers like this should be used while transitioning to a longer term more effective preventative.

Oxygen therapy is an abortive.  In other words you use it to abort or end an existing attack.  Oxygen therapy is typically 70% effective at flow rates up to 15 liters/minute.  Higher flow rates are even more effective.

The following link will give you the "How To" go about asking for a properly written prescription for oxygen therapy:

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

Ask your physician to write the Rx for a flow rate of 15 to 25 liters/minute.  The higher flow rate will support hyperventilation and that will help abort your cluster headaches faster than the lower flow rates.

If you physician looks at you like you have two heads when you ask for a flow rate of 25 liters/minute, make sure you've down loaded and print out the suggested files at the end of the above link in advance so you can hand them to him...

If you've having 3 or more cluster headaches a day/24 hours, you're going to need the larger oxygen cylinders M-size or larger.  These are big green hummers that hold enough oxygen for at least a week at three attacks a day.   One of the smaller E-size oxygen cylinders will only hold enough oxygen for 1 day at three attacks a day so be warned.

The following photo shows my home oxygen therapy kit with 3 of the larger M-size oxygen cylinders, one of the $27.50 O2PTIMASK™ non-rebreathing mask kits with 3-liter reservoir bag from the CH.com store link at the left, and also a demand valve.

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

Push your doc for the 25 liter/minute flow rate but don't settle for any flow rate less than 15 liters/minute.  If he balks, take the safety off your hubby and take off his leash.

And if your doctor continues to balk at writing an Rx for that flow rate, tell him this is the Standard Of Care acute treatment for the cluster headache as recommended by the National Institutes of Health prepared by the European Federation of Neurological Societies (EFNS) task force.  See the following link for their suggested methods of intervention for cluster headache:

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


In short, take no hostages in your quest for oxygen therapy, and keep us posted.

Take care,

V/R, Batch

Brew wrote on Sep 10^th, 2010 at 10:36pm:

Quote: Like I want thousands of dollars in medical bills my insurance is horrible and I'm going to be paying for this for awhile. Believe it or not, there are people who do just this. It's a psychiatric disorder called Münchausen syndrome. Those affected feign disease, illness, or psychological trauma in order to draw attention or sympathy to themselves.

There is also Münchausen syndrome by proxy where someone inflicts an injury or illness onto someone else, frequently a parent onto a child, in order to get attention or sympathy.

You all are so wonderful!! I'm so glad I found this site... I tried the energy drink last night knocked it down and went for a 20 min walk outside in the cool air.. I slept for 5 hours before it woke me up and it only took 30 mins to get rid of this time:D
I know that the meds the doc gave me are a stop gate at most but if thats what helped me sleep last night I'm all for it. I'm going to ask about the oxygen treatment he did say that what I am going through is CH he said that 3 years ago when I had my very first attack.
This time around its been worse longer then before and less sleep but with your help here I have added things to my routine to help and between all of it I found some relief last night..
Big Thanks to you all!!!!
It took me hours of searching online to find this site and you best believe I'll never lose it:D

Welcome to the board, so glad you found us. It's kind of over whelming at first, but trust me, stick around and it'll start making sense, then you can get a routine started to deal with the CH. Here's my routine just to give you an example...there are as many variations on this as there are people on the board.

The cycle starts, I go on a 10 day prednisone taper while I start my prevent med...the med I take daily while on cycle to reduce how many hits i get, I use lithium, Verapamil and Topomax are popular prevents too.

When an attack starts I huff oxygen while I drink an energy drink...for taste I prefer sugar free Red Bull...it's a 1-2 punch that knocks the beast down and keeps me pain free for several hours. I abort in 6-10 minutes with 02.

If I'm caught away from 02, traveling etc., I use imitrex injectables. Expensive, I HATE how they make me feel but they slay the beast fast. When I've gone 2 weeks pain free I wean off the lithium and see if I get attacked. If not, cycle over! Hope this helps.

Joe