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

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

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.  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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

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 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

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.  

Val

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!     I for one would never give you one, but you have to watch out for the others!

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

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

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

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

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

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


Thank you Joe!  I appreciate the well wishes!

Pamela

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

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