Well,  I had my neuro apt yesterday...  I had a headache going into the office thinking that, "Hey, I can explain in perfect detail whats going on and maybe get better results."  WRONG....

For the first time I was marginalized by my doctor.  I have not been sleeping well and she is saying that she needs to treat my sleeplessness cuz that is probably causing the headaches. 

Forget that the headache stated a month and a half ago, forget that I didnt start not sleeping until after I was released form the hospital 3 weeks ago.  Forget that this all occured exactly one year ago and lasted 4 months.  Forget that my headaches spike at 9am and 4:30 pm almost daily. 

As frustrated as I am with her, I am more frustrated with me.  I never mentioned Oxygen, I never mentionend being refered out to a headache specialist, I was so side tracked by her new, negative atitude, that I completly forgot to bring these things up.  I'll be another month or two before I get into to see her again...

Next time I'm writing it down and reading it from a script if I have to...

Thanks for hearing me complain....

Pat,

Is there anyway you can call the neuro office and ask to discuss what you forgot to discuss.  I know it's hard to have your mind there while going through a hit.  I can't think of anything during a hit.  Please see if she can get you to a headache specialists because she seems to know very little about CH since her conclusion is lack of sleep.  If they
bat you down about the O2, look into welders oxygen at a local supplier.  Do you know any friends or family that welds?  You can get the optimask here at the CH.com store on your left and get a good regulator online.  I got both of mine on Ebay. 

Also, try looking into Melatonin (OTC) for a good nights rest.
I would start with 9mg and take it 1/2 hour before bed.  Some people increase that dose to 15mg plus.  You need to see what works for you.

Remember, this place is for you to vent as much as you like.  We all know what you're going through.  If you have any questions or need to PM me, please feel free.

I'm wishing you PF days my friend!

Chad

Absolutely! Go in with a script. I used to coach my clients to do this as a way to not let the tension of the situation take control.

My doc expects me to have a checklist and it not only speeds up the appointment but insures that new/important medical developments are not lost by a side track that we may get on.

BUT, primarily, do you need an official referral to get to a headache specialist? Is this an employer/insurance/etc. requirement?

Confirm before you assume and loss the initiative.

Do you really think you should waste your time with the same doc.? You would know better than me but does she know CH?

As far as the 02, it would have cost me a big deductable thru my insurance so I went to a local welding shop and got a M tank and skiped the insurance company.

M-Tank  8.50+20.00 deposit on tank
Mask and mouth piece  CH.com store 27.50
Regulator E-Bay  42.50 with shipping

Under 100.00 bucks

The Melatonin worked wonders for me and many others here,I take 10mg 1 hour before bed.

Hang in there and piss and moan all you want,we'll listen.

Sadly, your experience is a common one. CH is so rare, few doctors have any kind of a grasp on it. Call your insurance company and see if you need a referral to a headache specialist neuro, or if you can just locate one and go yourself. I'm with CIGNA, they did not require a referral.

If they do not require one, start calling around. Fine a specialist who can see you now! I'm like Bob, I get totally stressed by doctors, I immediatley revert to the awed 12 year old in the vice pricipals office!  :D I write EVERYTHING down in bullet points so I remember it and don't blank out.


Joe

Pat,  That is truly disheartening and damn frustrating!  I remember the days of hubby going from neuro to neuro only to be diagnosed with anything from a sinus infection to allergies.  My best advice to you friend, since you are from Ohio is to get appt at Cleveland Clinic headache center.  No matter where you live in the state, trust me, it's worth the drive.  I don't know your insurance situation, but all it would take is one phone call from your current doc to CC to get you in.  Did it not only with hubby, but with me as well.  Both were seeing different neuros.  If you don't need a referral you could still pursue it, you may just have a wait....but hey, you can't see your current neuro for 2 months anyway.  If doc calls a referral you will get in MUCH quicker.  Plus ask to be put on their cancellation list.  Trust me, Cleveland Clinic headache docs GET IT!! 

If I were you I would call your doc and DEMAND a referral to a headache specialist at CC.  Explain you are asking for only 5 minutes of their time to do this.  Tell them you found one that specializes in what you believe is the underlying issue. (Dr. Stillman rocks!)  If they give you crap about it, forget about being nice, remember this is a fight!   (If they give you a hard time, picture in your mind what that pain feels like when talking with them, and ask if it is their policy to allow patients to continue to suffer if they have an alternative plan!).  You have a right as a patient to take an active role in your treatment and your neuro should respect that. 

In the meantime, the welder O2 is good advice in the short-term...

I hope it works out well....take care.

I'll second the strong recommendation for the Cleveland Clinic. Dr. Tepper spent an hour and a half with me on the first visit and wrote up a full eval that must have taken as long. She recommended treatment paths I had not encountered at the Jefferson Headache Center in Philly. I was thoroughly impressed. -Chris

As for me switching up doctors, contacting the doctor, or needing a referal... I'm a Veteran and, unfortunatly, I need to follow a fairly ardous process to get the referral to the CHC.  Even calling hte doctor is not possible.  I can call her nurse but the neuro dept is pretty small so access to the docs is tightly managed. 

My current neuro wants to do an MRI so I'm waiting on a call from Imaging to get that scheduled.  once that's done I'll ahve a follow up with the neuro. 

I will have a script with me and I will not let her rush me through her little dismissive processes.  I think that I'll even record the apointment with a pocket DVR for sanitiy's sake.

I really do appreciate your support, it reminds me that I'm not crazy...

 

I went to a neuro appointment i had to wait 2months for it n during that time it was having no headaches 1month later and they are back they said come back when they get worse as they seem to be resolving themselves on their own i wasnt happy to say the least now they back i went to doctors yesterday and he has prescribed me verapamil i have only taken 3 tabs since yesterday and i have no headache today wen i would normally have one! This is the 4th nmed i been prescribed the other 3 made me sleep all day and night! they were beta blockers and anti depressents.

sorry to say this but i mean it the nicest way possible but thank you for having this conversation .....i am waitin for an appointment well referral to the neuro (spelling) now i have an idea what to expect and also to go in with a script ....so i dont get side tracked or even forget things whilst im there....this site is amazing and i think the people on it are a testament to how we can care for 1 another in times of crisis and i wish u all pf days and nights..... thank you all

Adam, Pat, and anybody else for that matter, if at all possible have a supporter or family member go with you to your doc appt and take notes.  I'm a big note taker, simply because you are given so much information and two sets of ears hearing the information is better than one.  You'll be busy being examined...while the doc talks your supporter can jot down what is being said and explained to you so you can better digest the info later.  They could also write down the answers to questions you will no doubt have with your script.  Good Luck and wishing PF days and nights to all!

his wife wrote on Nov 13^th, 2010 at 1:45pm:

Adam, Pat, and anybody else for that matter, if at all possible have a supporter or family member go with you to your doc appt and take notes.  I'm a big note taker, simply because you are given so much information and two sets of ears hearing the information is better than one.  You'll be busy being examined...while the doc talks your supporter can jot down what is being said and explained to you so you can better digest the info later.  They could also write down the answers to questions you will no doubt have with your script.  Good Luck and wishing PF days and nights to all!

I would echo this!  I don't know about anyone else, but with the sleep deprivation most of us suffer from memory is one of the first things that goes.  I have Linda go with me to help me remember what the Dr said.  After we leave we always discuss it cause otherwise I might as well not have been there.  We've got a picture hanging on the side of our fridge showing a man wearing a hospital gown sitting on an exam table.  The caption says to take someone along because studies show that when you are naked you forget 80% of what you are told.   ;D  We've had it there for several years cause it still brings a smile to us.  (We're easy to entertain)

Jerry

tell me about it im in a band and was recording on friday afternoon ......it must have took me about 15 takes to record a simple 8 bar verse ....coincidence not sure but it was a first.....winds me up lol but yeah il make sure some1 goes with me to record the days events ...thank you again