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

Hello Debbie
It's nice to meet you, I'm just sorry it has to be here and 'cos of our friend the beasty

Please excuse my ignorance of diabetes but can you drink energy drinks such as red bull in the "diet" versions? IE sugar free? I know some diet stuff isn't suitable for diabetics. What about very strong coffee? Those will both work in the same way as imitrex, ie they are vaso constrictors so will reduce the swelling of the blood vessels that causes our pain.

Ice may help you too, frozen peas are not just for dinner LOL Those reuseable ice packs are also fantastic.

Please speak to your doctor about using any of our "home remedies" as obviously, we can suggest things but we don't know how they will affect YOU and any decisions are best made in conjunction with your family doctor who knows you best.

Melatonin is also another med that springs straight to mind for helping with night time attacks.
The usual dose we use is 6-9mg about an hour before bed.

Frovatriptan (a prescription med) an hour before bed can also prevent attacks too. It's useless as an abortive as it takes too long to work but if taken in time, ie an hour or so before an attack is due, it will give up to 26 hours relief although that varies for everyone. The most I've ever had was 17 hours but I'm not knocking that at all!

I hope these suggestions help a bit, I am trying to be careful of what I suggest as I don't want to give you info on something you can't use.. its not easy! We will do our level best to help and support you though


Regards
Helen

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

   

Hi, Debbie!

Welcome to the insane asylum family!

Seeing that you are a type 1 diabetic (we always called it "juvenile diabetic", back in the day) for a fair number of years ... two years, right?  Cuz you obviously are jes a spring chicken and aren't old enough to have had it for very long ... LOL!   My wife (actually, EX-wife, but we have a GREAT relationship) is a type 1 diabetic, also, and seeing that she is now knocking on the door to 60 years old (nobody better tell her that I let that out!) she has had many years of dealing with a severe illness, just as you have.

I am going to assume that you have not let the diabetes rule your life, or curtail your fun times, just because you have diabetes, right?  I am sure you have your emergency supplies close by, where ever you are, right?

Well, the same is true of clusters.  You get trained on how to prevent, and abort hits, and then you go right back to living a full and fun life!  Do NOT give in to it!  You know how to fight an ongoing medical battle, so you are primed to do just GREAT with clusters!

Get your doctor to prescribe oxygen, and start fighting the attacks off!  Make sure that he/she writes up the prescription properly.  It MUST say, at a flow rate of 15 LPM, with a non-rebreathing mask, for cluster headaches.

If you are having trouble with getting the prescription, or how to use it, most of us will be more than happy to jump in and try to help you out!

Good luck, and keep us informed, and ask away!

Chuck

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 again!

Thanks for the welcome, and the support.

Let me try to answer the questions first...........

Helen..............yes, energy drinks do come in 'diet' form..........I asked my neuro today, and he was not comfortable with how they would interact with verapamil..............but I did purchase a couple, and will have one on my side table tonight, in case the beast returns (like, as if he won't..........LOL).

I am picking up a 'script for oxygen tomorrow..........and have already ordered all the specs............25 LPM...........non-rebreathing mask............thanks to all of you for making me sound like I knew what I was talking about.  The supplier has 2 other CH customers, so she seemed to understand what I was looking for.

Melatonin..............bought some today at the health food store............will try it tonight, and let you know if it helped.

Hey, Carl!  Verapamil...............I am on 360/day...........my neuro had no problem if I wanted to increase the dose..........but I had low blood pressure before he put me on these...............I am having problems with dizziness and nausea already...........so we have decided not to increase the verapamil yet.  Hopefully, the oxygen and melatonin will suffice, along with my current dose.

I have downloaded the letter from OUCH.  Thanks for the link.  I think, at the moment, my husband is almost as tired of my CH as I am...............he is wondering where his wife went.  I am soooooooo tired all the time.  I am hoping...........if I can get this under control (even somewhat)...........it will be a topic I can re-open at my leisure...........but right now............double sigh.

Chuck..........yes, I am a 'juvenile diabetic'...........it was called that when I was diagnosed, as well...............I guess because the vast majority of patients were young.  Thanks for the support.  This site has helped me realize that I can't give up (or in) to the beast............but it has sure been a difficult road to find you people.  Can't thank you enough for being here.

Ditto, Barbara.  I guess I started to feel like I was a bit of a basket case...............this is such a strange, unknown ailment............my family was sure it was 'just stress' (as if stress wasn't a major problem, but something dreamed up)!

Again, thanks to all.  I will try to inform what has worked (and what hasn't) for me, as I try different concoctions...........the same as y'all have done, and helped me with your suggestions.

Debbie

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, Debbie.  Your endo/neuro may be concerned about taurine with Verapamil, but keep in mind that taurine is widely used for diabetic neuropathy...........  If use of taurine (within reason) can possibly reduce the Verapamil dosage, it's even better.  Sincerely hope O2 does the trick to abort!  When the "beast" isn't TOO active, I can even use O2 as sort of a preventative even, to get rid of the shadow before CH hurts me.

Managing diabetes is enough of a daily brain bruise!  Hang in there....

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