Well my husband had his appointment yesterday at the Cleveland Clinic with Dr. Mark *)X*.    I don't care for him.  He may be good at what he does, but I shut-up 1/2 way with my questions, b/c he kinda blew me off with every one.  He put my husband on a couple of narcotics (Oxy-codone & Zyprexa) plus Verapamil 80 mg. He's on heart meds so he can't take Imitrex, and 15 lpm of oxygen (which was delivered last night).   

When I asked him about uping it to 25 lpm, he's says "I've never heard of that, it only goes to 15", then onto something else.  I asked about SUNCT, and he gave a very quick reason why he didn't have it, and then blew me off again.    I realize I'm not the one having them, but I read a lot and just wanted some of my questions answered so I could help my husband through this.  I see everything my husband goes through with a clear head, (pardon the pun) been doing all the research on this board and internet.   I guess sometimes too much reading is a bad thing.

He is going to have a Sleep Study done to to see if he has Sleep Apnea too which I read "could" be a cause of his CH, but I didn't say a word.  I won't be doing any research on that, well maybe a little.

Am I wrong?  Sorry for the rambling, I just wanted to update some that responded to my posts and I guess vent a little.   Thank you to everyone who did that.  I'll still read this MB, but not post, unless I have a specific question.   BTW, my husband's the one that had his first CH at 55 and his second cycle this time at 58.

Susand :(

I'm shore Dr's think we're all stupid and can't possibly ask an intelligent question about anything because we'r not as qualified as they are   >:(

The trouble is most of them have lost sight of what they are actually doing . They need to remember that although this is just another day at work for them , this is a potentially life changing experience for us.

After waiting six months for a neuro appointment ( by which time I was well and truly out of cycle ) he didn't listen to a word i said, talked over me , muttered something about sunct and kicked me out the door , all that took less than 3 minuets.

Don't despair , research and ask all the questions you like here , nothing is a silly question. I've learnt more about CH and other types of headaches here than any Dr. could tell you.

BTW the narcs sound like a bad idea, please use with care.

I hope your husband finds relief very soon, hes very lucky he has you to help him.

Good luck and God bless

Nigel

Dr Mark doesn't sound as if he will win any prizes for his manner. Not listening is one way that doctors can miss a lot. He also needs to learn that the Dr title does not make you a god (most people who have the title rapidly learn it).

Oxycodone is a narcotic, which is unlikely to touch the pain of a CH whilst resulting in a lot of potential issues from addiction, withdrawal, etc. I'd be very careful with it. If used in tablet form at the start of a CH it is likely to be 20 or so minutes before it has been absorbed. Since oxygen can kill of a CH a lot quicker than that, I question its value.

Zyprexa (a brand name of Olanzapine) can be used to abort CHs (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE).

Verapamil is a good preventive, but 80mg is a very low dose, with 360 - 480mg a day being a common dose although some go as high as 1000mg. However it can lower blood pressure, so with the mention of "heart meds" it may explain the lower than normal dose.

If Dr Mark hasn't heard of people using 25lpm then he needs to read up a bit more. However the important thing is that you've got the prescription for oxygen, so there is little to stop you getting your own regulator that goes to 25lpm. I can abort a CH about twice as quick with 25lpm compared to 15lpm, so this is a good move.


Quote:

I see everything my husband goes through with a clear head, (pardon the pun) been doing all the research on this board and internet.   I guess sometimes too much reading is a bad thing.

You are guessing wrong on this! You are a great supporter in doing so much, especially from reading up and learning as much as you can do. That covers both CH and sleep apnea.

So keep learning and asking questions. Not all doctors are the same.

I'd dump this guy. Find someone who knows what they're talking about and who will listen to you.

If your husband does have sleep apnea, treating it (usually with a CPAP machine) will make the time that he IS asleep much more beneficial and restful. But it's not a cause of CH. I have severe sleep apnea, and know of at least 2 dozen other clusterheads that have it. Treating it did not eliminate the CH. I had hoped that it would. But being better rested does enable us to better face our attacks.

Ouch, sadly a familiar refrain. Unfortunately you saw a doctor who deosn't have a God complex, he thinks God has a doctor complex. >:( Too damned full of himself to think anyone can possibly present him with something he doesn't already know....heavy heavy sigh....

Sleep apnea doesn't cause or contribute to CH. Many on this board had the sleep study, got the CPAP machine, they now sleep MUCH MUCH better, still get CH! Worth the time as sleep apnea is no laughing matter and should be addressed.

Pitch the narcotics, they are worthless. As Mike said, the dosing on the Verapamil is way low. The 15 LPM regulator might work for your hubby. Some get relief at rates that low. Watch E-Bay, you can grab regulators there for as cheap as $20 that go upwards of 45 LPM. Try not to hold this doc against the medical profession, do try and find another one though as this arrogant, pompous, uneducated ^&%^&%$% moron will sadly be of little help to you.

Supporters like you are worth their weight in gold, bless your heart for the work you've already put in, and undoubtedly will continue to do on behalf of the hubby. :)

Joe

Okay, might want to back up and find another doc like the others have said.

O.U.C.H. has a list of sufferer recommended doctors.

These are listed for Ohio

Ohio
Cincinnati:
Dr. Joseph Nicolas
University of Cincinnati Physicians

Cleveland:
Dr. Mark Stillman
Cleveland Clinic - Neurological Center for Pain

Dr. Stewart J. Tepper
Cleveland Neurological Center

Columbus:
Dr. Francis J. O'Donnell
OrthoNeuro

Grove City:
Dr. John Horn (PCP)
Grove City Family Health

Hilliard:
Dr. Donata Rechnitzer (PCP)
ExpressMed

Westlake:
Dr. Carl Ansevin

Thank you so much.  After a couple of days thinking about it, I will keep up my research.  I guess with reading everyone's posts on here, it's all trial and error for everyone with CH.  What works for one, doesn't always work for someone else.  The next time he needs to see a neurologist, I'll pick another.

For Deltadarlin, Dr. Mark is on your list.  I specifically asked for him when making the appt b/c his name was on O.U.C.H. list  ::)

Take care everyone.  I don't have the beast, but I surely wouldn't wish this on my worst enemy.

Susand

susand wrote on Jul 10^th, 2011 at 12:47pm:

I guess with reading everyone's posts on here, it's all trial and error for everyone with CH.  What works for one, doesn't always work for someone else.  The next time he needs to see a neurologist, I'll pick another.Susand

Unfortunately it's true...but it isn't open universe. We know a lot about what almost universally has not worked and that by itself is a help. The rest? Yes, what works for one will probably work for two or more, but not necessarily for all. As a chronic, I read everything I could on this site and made a long list of everything that worked for someone and just started working my way through the list under my docs guidance. The best advice was to get hooked up to a CH specialist. Anyway, best of luck and God bless. lance

Sorry, maybe he's changed or he was having a bad day.  Somebody seemed to think he was decent or he wouldn't be on the list  ;).  And, sometimes you just have to shop around until you find a doctor that you mesh with.

Carolyn