Hi there.  I am brand new to these headaches.  It all started last Tuesday.  I was sitting on the couch watching tv with my husband and my head starting hurting on the right side.  It came on really fast and it was really painful.  It only lasted about 15-20 minutes.  I found myself sitting indian-style, rocking back and forth.  I had another one about 2 hours later.  My first thought was, "OMGosh...I have a brain tumor".

Well, I chalked it up to a freak incident because it didn't happen the next day.  I went 3 days without having another one.  Since then, I have had 1-2 everyday.  I went to my family doctor this past Monday and he immediately told me it sounded like Cluster Headaches.  I had never even hear of this, so I was clueless.  I got home and started researching and sure enough, my symptoms seem to match.

My doctor did order an MRI for me.  I will do that Monday morning.  This is very new to me and quite frankly, it scares me terribly.  I am a stay at home mom.  My son is 3 years old and it scares me when I have one during the day.  I hate that my son has to see me this way.  Thankfully I have only had a couple during the day.  Most seem to hit during sleep or if I take a nap during the day (which I quickly learned to avoid).  

Anyway, I found this website and thought it could be a great support system for me.  I really feel for all of you that have been going through this for years.  My heart goes out to each and every one of you.  

Thanks for listening,
Pammy

One thing I forgot to ask...It is normal for my jaw and cheeks to be affected after an attack?  I get little twinges all throughout the day.  My jaw has always locked up every once in a while, but since these attacks started, it pops all the time....yawning, eating, etc.  Could CH be causing some nerve damage?

Pammykm wrote on Jul 9^th, 2009 at 3:29pm:

One thing I forgot to ask...It is normal for my jaw and cheeks to be affected after an attack?  I get little twinges all throughout the day.  My jaw has always locked up every once in a while, but since these attacks started, it pops all the time....yawning, eating, etc.  Could CH be causing some nerve damage?

Hi Pammy!  Welcome!  Sorry you are here out of need, but glad you found the site...

To answer your question in part - the cluster headaches pain is felt in the trigeminal nerve, which runs throughout your face - around the jaw area, around the eye, cheek, nose, forehead, etc.  If you look up a picture of the trigeminal nerve on the web (for example see link) you will see the extent of the reach of the nerve.  This can all be affected.  This is not a complete picture - look at different pictures you find and you will see the rest of the ophthalmic branch there too.   :P
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Talk to your doc about your question on the nerve damage/ jaw popping though - any concerns should be expressed to her/ him too!!!

Did your doc start you on any preventative meds?  Or give you anything to abort your headaches??

A few things you can do at home are treat with ice (or heat - some prefer) or drink an energy drink with taurine at the start of a headache.  strong coffee also helps.  

Oxygen is my preferred way to abort the headaches, as it is for Many others here, so I'd encourage you to read the oxygen link to the left!!

Once again, welcome!!

Val

Pammy,read to oxygen link and go get it.

All the best, Iddy

Thank you Val and Iddy for your responses!  

Val- My doctor did not give anything to prevent the attacks, but he did prescribe me some Lidocaine for my nose.  I'm not really sure if it helped.  The last two attacks have been shorter in length, but still very painful.  He wants to do the MRI before he gives me an official diagnosis, but he feels pretty certain that it is probably Cluster Headaches. Thanks for all the abort suggestions.  I will definitely give them a try.  

I am also monitoring my food to see if there is a connection somewhere.  I have had chocolate the day before each of my attacks.  The 3 days I didn't have a headache, I did not eat chocolate the day before.  Could be a coincidence?  I don't know.  I am going to steer clear of chocolate for a while and see though.  

My doctor did mention oxygen as a treatment at the appointment.  His only concern is that insurance may not pay for it.  Did any of you have trouble with insurance paying for oxygen?

Thanks again to both of you for your responses.  I really appreciate it!

Hi  Pammykm,
welcome to your new home. theres lots of info on your left <<<<<<< really push for the O2 its a miracle worker. just got hit 30 minutes ago and lasted 5 min with O2 without it really getting a grip of me also start keeping a headache diary to show you Dr its also theraputic (at least for me). some people use ice or heat to help them with a hit and energy drinks i.e. redbull wich also helps. keep away from alcohol as that is a triger and you are right about chocolate (at least thats what others have said) is also a triger.

wishing you lots of PF days

Mark (newly converted O2 user (amen))

Hi Pammy,

Read, read, read!  There is a great deal of info on this site which will help you deal with the beast.

It's sounds like you lucked out with a Dr that is familiar with CH.  Many people here went years without proper treatment and advice.  Don't be afraid to print material from here and bring to the Dr. to discuss.  

Try the oxygen!!!!!  Read the link at left to make sure you use it correctly.  A little O2 doesn't seem to help.  It has to be a very high flow rate, with special mask.  I know money may be an issue, but the O2 is not that expensive, and I would get it no matter what it costs.  The piece of mind I now have when I look at that O2 tank is priceless!!

Start a headache journal.  When they hit, how hard (KIP scale), how long, what you were doing, ate , etc.  Alcohol is a trigger for many here.

Don't worry about the little one, he's young, and won't remember.  My 8 year old son can take one look at me and he runs to the freezer for the ice pack and then leaves me alone till its over.  I think the kids understand better than some adults.

I've only been o this site for a few weeks, but the people here have really helped me to deal with the beast.  You need to fight back, don't give in!!!

PFD's

Todd

Thank you Mark and Todd for your responses!  

I really do have a great doctor.  He seems to know quite a bit about cluster headaches.  After my MRI, I will talk to my doctor more about the oxygen.  It seem to be the safest method to me.

I have already started a headache journal.  I've been logging the date, time, and length of the attacks.  I will study up on the kip scale and start logging that too.

Thanks for all the suggestions.  I would try the energy drink, but my attacks seem to be coming during night sleep only lately.  I had 5 during sleep last night...thank God they weren't really bad ones!  

I have been seeing a pattern with my headaches.  I have been getting them during sleep, but it's usually when I wake up during the night.  It's like I can't get into a deep sleep.  I've always had sleep issues though.  I wonder if a sleep aid would help?

Thanks again for all your help.  It's very comforting to know I have support from others who understand.  

Wishing everyone lots of PFD's!!!

Pamela

many take Melatonin for help getting through the night without hits.  It is over the counter - people generally take between 10-18mg - but I have seen some recommendations to start with 3mg per night for a few days, go up to 6 for a few days, etc until you see that it is helping you - up to 18.  You can talk to your doc about it - but it does help many for this night-time pattern that you speak of.  Getting hit at night is common - many get hit within 2 hours of falling asleep.  It is the REM sleep where one is usually hit.

You asked if it is hard to get the O2 from insurance - it isn't if you get the prescription written properly.  How to word the prescription is written out in the oxygen link off to the left - I printed this and brought it to my neuro and he copied it word for word.  Insurance had no problem.  Most people have problems getting the prescription, not getting it approved by insurance!!  Glad you seem to have a decent doc!  That is a GReaT first step.   8-)

Val

Val_ wrote on Jul 10^th, 2009 at 11:47am:

many take Melatonin for help getting through the night without hits.  It is over the counter - people generally take between 10-18mg - but I have seen some recommendations to start with 3mg per night for a few days, go up to 6 for a few days, etc until you see that it is helping you - up to 18.  You can talk to your doc about it - but it does help many for this night-time pattern that you speak of.  Getting hit at night is common - many get hit within 2 hours of falling asleep.  It is the REM sleep where one is usually hit. You asked if it is hard to get the O2 from insurance - it isn't if you get the prescription written properly.  How to word the prescription is written out in the oxygen link off to the left - I printed this and brought it to my neuro and he copied it word for word.  Insurance had no problem.  Most people have problems getting the prescription, not getting it approved by insurance!!  Glad you seem to have a decent doc!  That is a GReaT first step.   8-) Val

Thank you!  I will check out the prescription in the oxygen link.  I have seen Melatonin at Wal-Mart, so I will try that and see if it helps. Thanks again for you help.

Pamela

Welcome home.  I know you didn't miss us while you were away, but we are the family you didn't know you had! :)  

I often sit up in my lazy boy to sleep when I'm getting hit during the night.  It seems to keep me from getting into a deep sleep and helps prevent the night attacks. (I think)  I'm unusual though in that I don't seem to get his with the REM sleep hits that many do.  I usually know when I am done for the night and wait until them to go to bed.  i am chronic though, and that seems to make a difference somehow.

I know this is all overwhelming to you, but be glad you have a Dr that knows about CH.  YOu have NO idea how lucky you are!  There is a tremendous amount of info available on this site, in fact more than 95% (my guess from the reports I've heard on this board and my experiences with Drs) know about CH.  DON'T be afraid to ask questions!  There are no dumb questions if they are honest questions, although you may get some dumb answers!   :D  I for one would never give you one, but you have to watch out for the others! ;D

As for your son, don't worry.  I have 5 kids, 4 of whom are grown and out of or leaving the house, but they have all seen me get hit since my oldest was about 3.  They weren't scarred to badly, and CH wasn't the cause of most of that.  Kids are resiliant, and if you explain it to them in language they can understand you will be amazed at the care they will give you.  I carry in my wallet a picture my daughter drew when she was 6.  It shows me curled up in a fetal position holding my head and crying.  In the corner she is sitting and crying.  That was her way of letting me know how much she cared.

Jerry

Callico wrote on Jul 10^th, 2009 at 11:40pm:

Welcome home.  I know you didn't miss us while you were away, but we are the family you didn't know you had! :)   I often sit up in my lazy boy to sleep when I'm getting hit during the night.  It seems to keep me from getting into a deep sleep and helps prevent the night attacks. (I think)  I'm unusual though in that I don't seem to get his with the REM sleep hits that many do.  I usually know when I am done for the night and wait until them to go to bed.  i am chronic though, and that seems to make a difference somehow. I know this is all overwhelming to you, but be glad you have a Dr that knows about CH.  YOu have NO idea how lucky you are!  There is a tremendous amount of info available on this site, in fact more than 95% (my guess from the reports I've heard on this board and my experiences with Drs) know about CH.  DON'T be afraid to ask questions!  There are no dumb questions if they are honest questions, although you may get some dumb answers!   :D  I for one would never give you one, but you have to watch out for the others! ;D As for your son, don't worry.  I have 5 kids, 4 of whom are grown and out of or leaving the house, but they have all seen me get hit since my oldest was about 3.  They weren't scarred to badly, and CH wasn't the cause of most of that.  Kids are resiliant, and if you explain it to them in language they can understand you will be amazed at the care they will give you.  I carry in my wallet a picture my daughter drew when she was 6.  It shows me curled up in a fetal position holding my head and crying.  In the corner she is sitting and crying.  That was her way of letting me know how much she cared. Jerry

Thank you for the warm welcome!  What a nice story about your daughter.  Thank you for sharing that!

I don't have a recliner to sleep in, but I bought some extra pillows today and I am going to stack them up on the bed so I am more upwright.  I am praying tonight will be better than last night.  I had 5 hits while sleeping...it was rough.  Up until last night, I had only had 1-2 per day.  I am sooooo tired, but I'm scared to go to sleep.  

Thank you so much for your post.  I am overwhelmed by the hospitality here.  I wish you all a PF night!!

Pamela

Hey all!  I found some Melatonin in my medicine cabinet...I forgot I did try it a while back to help me sleep.  It didn't help, so I stopped taking it.  I did take some last night, at a higher dosage.  While it did make me really sleepy, it didn't prevent the beast from coming.  He came 4 times during the night.  I read somewhere that Melatonin can be mixed with Benadryl.  Anyone have any experience with that?  Although I don't want to be in a state where I can't wake up, I will try just about anything to get some decent sleep.

I stacked my pillows in the bed on and off all night long.  I couldn't seem to get comfortable, so I switched back and forth.  I did notice the hits weren't as bad the times I was propped up.  I am getting a recliner today, it should be delivered shortly.  Maybe that will help me sleep more comfortably.

I had one this morning around 10:00 am and right when I felt it coming, I drank some Red Bull.  It stopped before it got really painful, so I will keep trying that until I can get some preventives and the oxygen.

Anyone ever tried the starbucks double shot espress drinks (premade from the grocery store)?  I was wondering how it compared to the Red Bull.  Is it the caffine or the Taurine that helps?

Thanks to everyone for all your help.  I deeply appreciate it.  Hope ya'll have a PF day!

Pamela

Welcome to the board. As far as the melatonin, I never used it. People who have had success with it mention it takes a week or two so don't give up too easily!

As I understand the enrgy drink solution, the taurine and caffeine combo is what gives you the turbo kick over just strong coffee.

Hopefully we can get you on some effective prevents, multiple hits at night are going to leave you exhausted! Hang in there.

Joe

It is the Taurene and Caffeine in combo that makes the energy drinks work.  If you check the espresso I think you will find that it actually has less caffeine than regular coffee.  I know when you go to Starbucks and just buy a shot it is less.

Jerry

Thanks for the info Joe and Jerry.  I think I will just stick with the Red Bull since it seemed to work.  My recliner did come today, so I will continue the Melatonin and sleep in it.  Hopefully, I will rest better tonight.  Thanks again for the info.  

Pamela

Just thought I would update.  I had my MRI Monday and my doctor called today and said it was completely normal.  Halellujah!!  At least I know now that I don't have a tumor or anything.  So....I go to the doctor tomorrow to discuss treatment options.  Wish me luck!

Pamela

Pssst......don't forget the O2.  ;)

Getting the "tumor" worry off your back...yeah...that lifts a big old black cloud away don't it? ;) That's great news....wishing you even more luck with the appointment tomorrow, keeping fingers crossed for you!

Joe

Racer1_NC wrote on Jul 16^th, 2009 at 1:02am:

Pssst......don't forget the O2.  ;)

I won't.  I've already printed out how the prescription needs to be written out and everything.  Thank you for the reminder though.  

Any suggestions on a preventative?  

Thanks,
Pamela

Guiseppi wrote on Jul 16^th, 2009 at 1:18am:

Getting the "tumor" worry off your back...yeah...that lifts a big old black cloud away don't it? ;) That's great news....wishing you even more luck with the appointment tomorrow, keeping fingers crossed for you! Joe

Thank you Joe!  I appreciate the well wishes!

Pamela

Suggstions for a preventative., prefaced of course with "I am not a doctor!".......Lithium has always worked great for me...even though it's supposed to be more effective for chronics and I'm episodic!!!....Verapamil is a very popular first line preventative......and many swear by topomax in spite of it's reputation for side effects making many refer to it as dopeymax!

Joe

I took myself off of Verapamil and Lithium because of the side-effects, and am having some success with Kudzu.  It works much the same as Verap, but without the side effects I got with it.

You will have to try adn see what works for you.  Bear in mind that what works today may not next year or next cycle.  The beast tends to morph and you will need to pay close attention and work with your Dr to determine what is the best course for you to take.  Notice I said WITH your Dr.  Don't just sit back and take whatever is prescribed without being involved.  You are the one who deals with the pain, and will deal with the side-effects of the meds, and you are going to have to be proactive in your own care.

Jerry

Notice I said WITH your Dr.  Don't just sit back and take whatever is prescribed without being involved.  You are the one who deals with the pain, and will deal with the side-effects of the meds, and you are going to have to be proactive in your own care.

Jerry

You said a mouthful there Jerry! ;) Great advice.

Joe

Pamela,

In your shoes, I would ask my Doc about Indocin (Indomethacin) which is normally very, very effective for Chronic Paroxysmal Hemicrania (CPH) - a form of headache thought to be related to Clusters. Some Doctors will go so far as to say that if Indo doesn't kill it, it ain't CPH.

- CPH sufferers generally have many, many attacks per day(not you)
- CPH attacks are generally shorter in duration - 10-15 minutes each.
- Ratio of Women to Men is 3:1
- Onset is most often in females 25-35 years old.

Whatever it is, you are just starting, so at least be aware of CPH.

Marc

Marc wrote on Jul 17^th, 2009 at 12:31am:

Pamela, In your shoes, I would ask my Doc about Indocin (Indomethacin) which is normally very, very effective for Chronic Paroxysmal Hemicrania (CPH) - a form of headache thought to be related to Clusters. Some Doctors will go so far as to say that if Indo doesn't kill it, it ain't CPH. - CPH sufferers generally have many, many attacks per day(not you) - CPH attacks are generally shorter in duration - 10-15 minutes each. - Ratio of Women to Men is 3:1 - Onset is most often in females 25-35 years old. Whatever it is, you are just starting, so at least be aware of CPH. Marc

Thank you for the information.  I will mention it at my next appointment.  

I saw the doctor yesterday and he put me on Prednisone.  He said we may have to try several before we find one that works.  While I am not looking forward to all the side effects, I hope it works.  I am on a high dose for 10 days, then I start gradually tapering off of it.  The weight gain is what really scares me.  Over the past year and a half, I have lost 80 lbs.  I am terrified I'll gain it all back.  

He also wrote the prescription for the o2.  My insurance will pay for it, but the company I took it to, doesn't have anything with such a high flow rate.  She called today and said she is trying to get it for me, but it may be next week.  

For the first time in weeks, I had a good nights sleep last night.  No headaches at all!!  I was thrilled!  I started the Prednisone this morning and now I am wondering if my cycle was ending.  Oh well, guess I won't know for sure now.  

Thanks for all the great advice and caring comments everyone.  I really appreciate it!

Pamela

I just started here a few days ago myself, but not new to clusters.

I wish you luck with the Prednisone. I had lots of trouble with it.

Callico, what side effects did you have with Verapamil? I'm on 120 mg Twice a day. ::)

campergal wrote on Jul 18^th, 2009 at 11:01am:

I just started here a few days ago myself, but not new to clusters. I wish you luck with the Prednisone. I had lots of trouble with it. Callico, what side effects did you have with Verapamil? I'm on 120 mg Twice a day. ::)

Hi Campergal!  If you don't mind me asking, what dosage of Prednisone were you taking and and how long?  What side effects did you have with it?  Thanks!

Pamela

The first two times (cycles) I ballooned up. My face was swollen within the 5-7 days of those pkg things.

The next cycle started. It continued going way pass my usual cycle time. 'I was desperate'! so she put me on, I think (???), 80mgs a day, I just don't remember. I know I couldn't even think straight and was climbing the walls.  After a few months I went to my reg doc for something and she said, my God you are getting way too much of that stuff. So she backed me off slow. And she did some tests.

I had cataracts, gained lots of weight, thinned skinned, dented nails, a hump like thing on my back, and worst it stopped my own immune system. I got lucky and after I was off it for awhile my immune system started up.

I think the whole thing was the neuro and I wasn't communicating well.  Some reason I never got back in to see her, she was on a trip or something. (?)

I was on it too long at a high dose.
That shouldn't happen to you. It just got out of hand with me. I think most people can take it fine...it was just me, and then so long and high.

campergal wrote on Jul 18^th, 2009 at 5:25pm:

The first two times (cycles) I ballooned up. My face was swollen within the 5-7 days of those pkg things. The next cycle started. It continued going way pass my usual cycle time. 'I was desperate'! so she put me on, I think (???), 80mgs a day, I just don't remember. I know I couldn't even think straight and was climbing the walls.  After a few months I went to my reg doc for something and she said, my God you are getting way too much of that stuff. So she backed me off slow. And she did some tests. I had cataracts, gained lots of weight, thinned skinned, dented nails, a hump like thing on my back, and worst it stopped my own immune system. I got lucky and after I was off it for awhile my immune system started up. I think the whole thing was the neuro and I wasn't communicating well.  Some reason I never got back in to see her, she was on a trip or something. (?) I was on it too long at a high dose. That shouldn't happen to you. It just got out of hand with me. I think most people can take it fine...it was just me, and then so long and high.

Hi Campergal!  Thanks for the info.  I do 60 mg for 10 days, then 30 mg for 3 days, then 15 mg for 3 days, 10 mg for 3 days, and then 5 mg for 2 weeks.  Does this sound about right?  

Gaining weight is my biggest fear since I've lost so much.  I sure would hate to have to start all over again...

Thanks again for the reply.  

Pamela

That kind of does sound right, Pam.

I wouldn't worry about the weight if you can stop a cycle Now!! Can work on weight later if you gain any. I don't think you will with being on it that short a time. I was a completely different story!

That's great you lost so much weight! :) :) :)

campergal wrote on Jul 19^th, 2009 at 2:48pm:

That kind of does sound right, Pam. I wouldn't worry about the weight if you can stop a cycle Now!! Can work on weight later if you gain any. I don't think you will with being on it that short a time. I was a completely different story! That's great you lost so much weight! :) :) :)

Thank you!  It's been a long journey, lol.  I hope that doesn't happen.  Sorry you had to go through that.  Sounds awful!  Did you say you are on Verapamil now?  How's that working for you?

Pamela

It's not working or is the Zoming.

The last cycle 02 helped, but the doc hasn't given me a script yet. All my docs no longer are around. So I only went to a sub.  ::) She wants to try the Zoming first. She wasn't going to listen to me about 02 at this point. ::) I'm having more shadows than the real Kippers of pain. So I will take these over the real full blown attacks.

So, she won't prescrible the o2?  That's weird.  I haven't got mine yet, but the insurance company has approved it...just waiting on the supply company.  I should have it up and ready before I get off the Prednisone.  I haven't had an attack since starting the Prednisone, but I hear the beast comes back with a vengeance after the Prednisone, unless it breaks the cycle.  

Hope the Zoming starts working for you, or that you find something that will.  Thanks for answering all my questions.  Have a great day!

Pamela

Hi Pamela,

welcome to the ward...or family  ;)

I've read some of your other posts and would definitely have your doc give you some sort of abortive... a triptan, OXYGEN!!!, zyprexa is quite effective..

You are correct as to what to prepare for...Many times prednisone is used to give a little holiday, however it is usually used as a transitional medication to ease some symptoms while we introduce a preventative med such as verapamil, mood stabilizers(depakote, neurontin, topomax), lithium, etc.

Don't sweat the kid thing either.
I have a 3 year old daughter and she doesn't really notice other than daddy disappeared for a few.
She likes to use my mask as trumpet and knows that my tanks are just part of the family or Daddy's girlfriends.
When Hannah was born I was in a high cycle and would have her in one arm rocking her back to sleep and I would be huffing my oxygen....the white noise from the tank made for a nice soothing sound for the newborn.

It is what it is. Don't worry about scaring your little one, don't worry about becoming incompasitated because you will not as you are stronger than the attacks,

Read as much as you can and reach out when you need.

oxoxox

E

Thanks E-DOUBLE!  I am getting the oxygen.  I called the healthcare store today and she said they are working on getting everything I need.  I live in a small town and they are not used to having anyone need such a high flow rate oxygen.  I should have it in a few days.

Thanks for sharing about your little one.  My little boy doesn't seem affected by my headaches.  My husband is usually home when I have them and I just disappear to another room until it's gone.  Children handle things like this better than us adults usually, lol.  

Thanks again for the welcome!  

Pamela