Good evening!

I have been checking out this board for the past week or so...........and thought it was about time that I introduced myself, and became a card-carrying, participating member.

My name is Debbie.  I am a Type 1 diabetic......since a child...(I am now a middle aged old bag..........LOL).......which complicated my diagnosis no end.

Roughly 5 years ago, I started getting excruciating pain behind my right eye...........in the middle of the night ONLY.  I shan't go into details..........y'all will understand.

Because of the Type 1...............most doctors assumed it was an eye problem............namely, RCE.  I have spend the past  5 years seeing countless opthamologists...............had 2 cataract surgeries..............been to numerous dry eye clinics...........etc.

Funny enough............my GP............a small town, country doctor............always insisted that my problem was 'a form of migraine'.  I have to give him credit, because even I didn't believe him.

When everything else failed (I WAS episodal..............I am NOW chronic....for the past 6 months or so), he sent me to a neuro......................who immediately diagnosed me with CH.

I am now on Verapamil......................minor relief................now I only get 3 - 4 attacks every 2nd night, or so, rather than every night............but now I also get daytime attacks, which I never had before.

I haven't tried anything else.  I will look for O2............I have no drug plan, and have no idea where to find this, but I will phone my doctor tomorrow.....................

Many of the drugs (like lithium, preg, etc). no doctor want to prescribe to me, because of the renal failure problem..........Type 1, you know........yawn.  I did get amitriptyline................put me to sleep in a heartbeat...............but just messed me up when I woke up with an attack.......2 or 3 times per night..........and high sugars.  Try figuring out how much insulin to inject when you are in a drug induced sleep...............forget Imitrex, or Treximet.

I dunno..................I am exhausted.  I understand people being suicidal..............every attack is unbearable...................the stress causes my sugars to skyrocket................my husband thinks I am a titch of a baby............can't take a bit of pain............how does one explain this?

Please understand..................I am terribly sorry that any of you are here....................but since you are...............I would like to thank you for the understanding I have read....................just knowing that I am not the only one...............seems selfish............but reassuring.

I hope, in the end, to be able to manage this beast..............similar to diabetes..............and to be able to help others do the same.

Sigh

Debbie

Hi Deb,
    Welcome to our little club.  You are not alone now.

What dosage of verapamil are you taking?  I was on 240mg, wasn't doin the job, so my Neuro upped it to 360mg.  Somewhat better.  Some here are on higher doses than that.  Chek with our doc.

Absolutely check into oxygen.  Go to the medication section and read Chuck's threads.  Good stuff.

my husband thinks I am a titch of a baby............can't take a bit of pain............how does one explain this?
Have your Hubby read the opening screen from this site.  There is also a great letter in the OUCH website,  the link is on the left side of this screen.

Read all you can here.  Hope you find some relief soon

                                     PFD's
                                      JPC


Edit:  here is the link to the OUCH letter.   Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

   

Welcome Debbie,

You've been given some great advice. Talk to your doc immediately about the O2 -- it works for about 70% of us as an abort. The secret is to get to it as soon as the headache hits. The higher flow rate (25 liters is better) works faster. And make sure you have a NON-rebreather mask. That's really important to make sure you get pure O2.

Ask your doctor about the Melatonin (OTC) before bedtime. It's the same stuff that's in the sleeping pills that they advertise on TV with Abe Lincolin in the guy's dream (that's what my neuro told me).

But like Chuck said, get a grip on the CH and go on a live your life. As for being a twitch - get your hubby on the supporters board and get him some "knowledge" of CH! We're a TUFF bunch of old biddies - this pain is not for sissies!

But you are NOT alone anymore. You've got a BIG family here who UNDERSTANDS and is here 24/7 to help. Remember that .....

Hugs BD

Hi Debbie, welcome to your new home. You are not alone with these anymore, and Clusterville is always open 24/7.

Funny how one can be feeling pretty badly due to a bad cycle or anything else and it sure does not take long and this place makes you feel a ton better. Nice family here!

As you can tell, I will push for you to try o2 to abort a CH. If there is anything I can do to help you I will. Let us know if your doc is giving everything you need for the proper o2 set up.

Nice to meet you.

  Barry

Welcome, sounds like hubby has no clue of the pain you and i endure. But we cant be mad at him, just tell him he is the same as everyone eles. And you can help him understand more by doing a little test. Take your thumb and begin pushing into his eyeball till he squirms, at the same time begin twisting his ear almost completely till its turned over, and then if you have a free hand start shoving a peice of ice up his nose, and i think that will give him a better understanding. And if not tell him to join this site and im sure potter would love to slap a few times with that big fish he got. Hope your pain free soon.. Coach Bill