Hi everyone!  Sheryl here, First I want you all to know that we found this website about 1 month ago.  When I first read the intro's I cried and had to share with Sonny to let him know that he was not alone.  I am going to try to make this as short as possible.  

I am horrified to hear that most of you have suffered this monster for so long.  I don't know how you are able to work suffering like you do.  You all are our hero's.  We have only suffered for nine months now, cancer is not killing Sonny, the CH are taking us both down, they have taken more out of us than all the cancer treatments put together!  
Let me explain Sonny.  He is 68, male, was diagosed with lung cancer about 2 years ago.  He has also suffered from "night terrors" for about the last 7 years.  And for as long as he can remember, has always had one or the other nostril plugged when he would go to bed, which determined which side he slept on.  Also, let me not forget to mention he also suffers occaisionally from aphasia.  Since being diagnosed with cancer he has had 2 lines of chemo therapy and other meds for other conditions.

Last December he had what he describes as a charlie horse/cramp in his left eye. That was it, until the middle of January '08 when he got his 1st bad headache.  Then another in Feb.  Since March these have increased in frequency and intensity.  After researching "Headaches" I came across CH and they decribed him to a "T", it was unbelievable.  I googled CH and found all of you here.  Thank you God!  We took the quiz, he scored 8 out of 10, there is no real eye tearing or nose running.  I did what all of you have suggested.  Read, Read and more reading, I have read so much I am now ready to post.  When HA did not subside, we went to GP, Dentist, eye doctor.  Nothing.  We were in the ER last May, registering 10 on the ricther scale of pain, MRI, nothing.  Went to neurologist he showed us that Sonny has had several "mini strokes"  in our last visit to the Neuro, he changed med from atenolol to verapamil as a preventative for the CH -  We are currently trying to get prescrip to oxygen. Last night Sonny had the oxygen test gadget on his finger, I guess we don't qualify for oxygen since we could not get the thing to register 88 or under.   I am printing info you all have suggested for the dr.  and yes, our neuro specializes in headaches, we have only seen him twice and  hopefully with the info we give him he will get us that script.

Caffiene helps sometimes.  Sonny has found that using a massager on his head helps.  I have read all the side effects from all his meds and yes several cause HA and we have tried stopping some to see if HA go away.  We are trying to determine if it's chronic or not, he has not had them that long to determine.  Sometime his CH seem to last 24/7 with pain level average fr. a 4-7  goodtimes a 1, badtimes a 9.  We do have some questions for you that I have not seen posted yet.  I hope you don't mind.

He can't lay on his right side at all, not even lean to his right, even if there is no CH at the time, if he does, CH almost instantaneously. anyone else have this problem?

Has anyone had afphasia?  could there be a connection?

On the nasal issue - Anyone suffer from nasal problems prior to the onset of CH?
Has anyone's MRI's shown signs of mini-strokes?

And finally.... anyone know how to make that oxygen tester register 88 and under?

We hope that all of you have PF days ahead.

Wow, where do I start?  I guess the first thing to do is welcome you both to the board.  I'm glad you found us but I'm sorry you had to.

The first thing that jumps out at me is the 88% O2 saturation test.  Who is making you jump through that hoop?  Oxygen saturation has nothing to do with attacking CH with Oxygen!!!  Anyone that tells you it does, doesn't know what they are talking about. 

I have no respiratory trouble.  My O2 sat #s are never lower than 96%.  If it is your Neuro, he has no understanding of how and why to treat CH with Oxygen.

In short, Oxygen therapy for CH is not respiratory in nature.  We use Oxygen as a vasoconstrictor.  Basically shrinking the arteries in the brain to relieve the pain.

Go to the Medications page and read the two stickies on Oxygen at the top of the page.  That should set you in the right direction.

I've never heard of Aphasia before but understand from Google that it is the loss of the ability to produce or understand language due to brain damage.  That added to the "mini strokes" you mention make his case very complicated.  My heart goes out to both of you.

-Dennis-

  Hi,  I am new to this site also but I have 15 years of ch.  I have had  sinus problems all my life and had surgery last year for it but it didnt help my left nostral closes every time I get a ch over a 5.  I am very sorry to hear of your husbands other problems,  I have learned from my experience that any illness or changes in the weather trigger my ch,  and also every time I have had surgery it would trigger them, also pian killers give terible rebound ha percocet was the worst for me.  If he is taking pain killers for the cancer have your doctor ween him off and try a different one.  I hope you two the best of luck and get some O2 some how call a different doctor if yours wont write the rx.  Phil

Thank you all for your help and support, we did the test and Sonny's o2 level went down during the night, way down, uh?  anyway, receive o2 for him to sleep with during the night with reg @ 2L/min, they also prescribed additional tanks with reg & mask set @ 8L/min.  2 days and o2 has definately help some.  I understand that it may take some time and also that from what you all say 15L is what we need.  I will work on getting that for him asap.

Insurance seems to be the reason for the 88% so I don't think we will have a hard time getting a new regulator.

Thank you all for being here and this site and here's praying for all to have a PF Week!

Ernie Moss aka Wishbone wrote on Sep 16^th, 2008 at 9:54am: