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.

Sheryl first my Prayer are with you and Sonny you both have a real load on you.  Honestly I am no expert on the O2 subject and I don't know if because of Sonny's lung cancer if this is the reason your neuro won't prescibe without the O2 tester being at a certain level.  Normally this would be the requirements for other other conditions, but not Cluster Headaches and of course it also could be an insurance coverage question as there is always a coding question.  However if he/she is a headache specialist I would think he/she would have the answer.  

I have nasal problems all the time whether in cycle or out.  I am a lefty so it is my left side.  My left nostril always stops up when I lay down and sometimes even when standing if humidity high.  

To my knowledge I have had no mini-strokes.

During cycle I cannot lay on my left side.  If I do within 30 minutes I will get a hit.  Out of cycle I can lay on my left side.

I don't know what afphasia is.

I am sorry you are here, but glad you found us and I do hope Sonny will get some PF days soon.  Wishbone.

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-

Print out the literature on O2 therapy and take it back to your neuro. O2 is the least Invasive therapy and the sat stats don't have anything to do with treatment for CH.

But you need it on high flow (at least 15liters per minute with a non-rebreather mask) for it to work properly.

With the mini strokes, sound like you have more going on than CH. My heart goes out to you (I spent 8 years going thru that with my hubby and it's a full time job). They finally did an O2 stat over a 24 hour period and found out he was going "down" at night. We got O2 after that without a problem. Might try that one if they give you a hard time. But they'll probably just give you a "low flow" regulator and you'll have to get your own "high flow" one for the CH. (they gave Bill a machine that only went to 5 liters, but some E-tanks also - you can get a high flow regulator for them - it's a thought).

Hugs BD

 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

Hi Sheryl,  welcome to you and Sonny!

I'm sorry you've had CH piled on top of all the other trials you face, but you came to the right place for help and support.


DennisM1045 wrote on Sep 10^th, 2008 at 9:36pm:

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.   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.

BarbaraD wrote on Sep 11^th, 2008 at 7:28am:

Print out the literature on O2 therapy and take it back to your neuro. O2 is the least Invasive therapy and the sat stats don't have anything to do with treatment for CH.

Dennis and Barbara are right and gave you good advice. I can say from experience that the saturation test, at least in my case, was definitely an insurance "hoop" to jump thru. Having the o2 information for my neuro got me the high flow regulator and the o2 pushed thru the insurance.  (i have insurance that fights me on everything and investigates even the smallest thing to see if its "medically necessary"!)

I hope Sonny gets some pain-free time soon, and wishing you both peace thru all you're dealing with.

Welcome to the site!

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!

Get the doc to fill out a need for medical necessity form and forgo all the testing. Our 02 treatment is for critical acute pain not the lack of 02 in the blood.
There is a good neuro in Medford. Dr. Meukanen. Or at least he was a few years ago.
all the best
thebb

Welcome to the insane asylum family!  Unfortunately, there is always room for one or two more.

Glad to see that he has reached his ripe, mature, age.  Maybe NOW those ungrateful young whippersnappers will quit calling me the old fart! (NAH, no such luck! LOL!)

Any how, in answer to at least one of your questions, YES, I have been told that I have had mini strokes, according to the MRI's that I have had.  I also have something (I forgot what it is called) that is normally seen in advanced age, that causes memory loss and dementia.  I guess now I have medical proof that I am a senile old fart!

The mini strokes were detected several years ago, but have not gotten any worse, since then.  My neuro has me on one full strength aspirin a day for that.

The BS about the 88% blood/oxygen concentration is a game the insurance company likes to play.  Git out yer fightin boots, and fight 'em on it!  I had to do that too, and still do, every so often.

I am glad that Sonny has his oxygen, but he DOES need a regulator that goes to a higher flow rate.  If you have trouble getting one, let me know, as I can get one sent to you.  (I keep spares)

With all that Sonny has to deal with, he should not have to deal with bureaucratic bull shit on top of it!  Let us know any problems you are having, and we will try to give suggestions on how to get around them.

The two threads that you were referred to, in the medical section, stickied at the top, that I started, should help some.  If you have more questions, please ask.

If you need to talk, on the phone, send me a PM, and I will give you my phone number.  I would be happy to talk to you.

Again, welcome aboard!

Chuck  (NOT the old fart)

Sonny and Sheryl if you do PM Chuck for his phone number don't be shocked if a female answers the phone as it will just be a nurse at the home.  They only let the him out of his little white jacket for meals and then only if he has behaved. ::) :D ;D

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

Sonny and Sheryl if you do PM Chuck for his phone number don't be shocked if a female answers the phone as it will just be a nurse at the home.  They only let the him out of his little white jacket for meals and then only if he has behaved. ::) :D ;D

MISTER Moss!

I DON'T want you riling up one of my sickest patients!

This particular patient is SEVERELY disturbed and needs constant monitoring, WITHOUT outside aggravation!

Kindly refrain from further adverse stimulation!  He has gotten VERY good at escaping that nice long sleeved coat we try to keep him in, and boring holes through all the wall padding, to escape this institution lovely home we have made for him (under court orders)!

Firmly,
Nurse Ratched

Duly noted, but with all due respect NurseRat I think if you would pay as much attention to patient Chuck as you do those young interns he would not have the time nor the wherewithall to unratchet from his lovely white jacket.  And while we are at he that last time he sent me a PM (I bet you didn't know about that did you as you eyes were elsewhere as usual) he said you never painted his toes anymore and used cheap shampoo. So who is riling you patient.  Maybe you should take inventory at home NurseRat.  [smiley=moon.gif]  Wishbone

Mister E. Moss!

I will have you know I am a highly trained and well respected nurse!  Why they even made a very famous movie about me, back in 1975, and the actress that played my part (only adequately) got an Oscar for her performance! (Even though she was too easy and lax with the patients.)

Keep up with your harassment, and innuendos, and we will make room in this rotten fruit farm nice place for YOU!

<Harrumph!>

Firmly;
Nurse Ratched

Now you've both done it!!!! You've upset Chuckles AGAIN!!! Nurse RAT you need to get back to your interns and Wishbone you need to... oh heck you know what you need to....

Now I've got to got up to the asylum nice home and calm Chuckles down AGAIN!!! Now where the devil did I put my butterfly net?????

Hugs BD