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        Cluster Headache Help and Support >> Cluster Headache Specific >> 1st appt with neuro--?'s
        
(Message started by: printspec on Sep 17^th, 2007, 7:52pm)

Title: 1st appt with neuro--?'s
Post by printspec on Sep 17^th, 2007, 7:52pm

I have my first appt. with a neuro on the 26th. I've already printed off the Rozen (?) article that I found in another post, but wondered if any of you can give me some suggestions of ?'s for me to ask the neuro.

Also, what can I expect to happen at the first appt? So far, I've only been bounced around GP's and they have no idea of what I'm going through, I've been put off for years and hope that I'm finally going to get something that works.

Thanks!

Bridgett

Title: Re: 1st appt with neuro--?'s
Post by DennisM1045 on Sep 17^th, 2007, 8:00pm

Any Neuro worth his salt is going to order an MRI on your noggin to make sure nothing else is wrong. That means you'll be going back at least once.

Find out if he's ever treated someone with clusters before. Get a feel for him/her and see they seem like someone you can work with. That is more important that finding someone with experience.

You should read through Rozen too so you have an idea of what you want to do before you go in. Make sure you discuss preventatives and abortives. Discuss your ideas on strategy. Then work with him/her to map it out. This is gonna take more than one appointment.

You are your own best advocate. The more you know the better you will be able to make the most of his/her services.

Good luck...

-Dennis-

Title: Re: 1st appt with neuro--?'s
Post by GrandPotentate on Sep 17^th, 2007, 10:28pm

So far, I'm batting around 50% with neuros.

One was a migraine expert, and convinced that was the way to go. He would ask questions about symptoms, not listen to answers. He was worse than worthless, got me dopey on a bunch of useless drugs.

I've moved, and needed to find new docs here. My GP is pretty arrogant and mildly dangerous. I finally got a referral to a neuro (3 days after the cycle ended!). He went down a list of questions, homed right in on the CH, and seemed somewhat familiar with the whole works. To the point of setting up an appointment for next spring in anticipation of my next cycle.

CH diagnosis has to be done by a good doc, and he needs to eliminate a bunch of other stuff. Talk with him about oxygen therapy - it is very effective for a lot of us when done right, and has few side effects.

Good luck, and do let us know how this works out for you!

Title: Re: 1st appt with neuro--?'s
Post by barry_sword on Sep 18^th, 2007, 7:34am

I fortunately was refered to a great Neuro. He is more than willing to work with me and is a very compassionate person. I went into his office on my last visit and had print off's of the info on o2 and asked if I could try it. He read the info and said he was more than willing to give me a script for o2 if that is what I wanted to try next.

Also I asked to have my Verapamil dosage increased to 480mg daily and again no problem. I kept a daily record of my blood pressure and showed him and again no problem. He is young and an godsend for me.

I hope you find the same in your Neuro and get some relief yourself. We are here for you so hang on and read all there is to read here.

Barry

Title: Re: 1st appt with neuro--?'s
Post by Guiseppi on Sep 18^th, 2007, 10:20am

I was lucky and stumbled on a good neuro early on...with Kaiser no less....who was a local expert on CH. He's now retired and I work with a nurse practitioner......Like Barry I'm blessed in that she'll listen to me, read what I bring her off the board and let me manage my own care. She's also the one that convinced me to go on the magnesium and B2 supplements which I'm convinced have eased the severity of my cycles.

Bottom line is you're still stuck with doing most of your own research because doctors get very little of this in doctor school. Find a doc who's smart enough to know he..(or she!!) doesn't know everything and is open to new information. Good luck!!

Guiseppi

Title: Re: 1st appt with neuro--?'s
Post by southwalessunshine on Sep 18^th, 2007, 12:48pm

I wasn't happy with my first visit with my neuro. He kinda gave me an uninformed spiel then discharged me without even seeing if the change of meds would work or not. luckily my new GP is great with the whole thing even if he is not very knowledgable, he is trying really hard to help and is open to me taking print outs and info to him. I'm being re referred to the neuro Oct 2nd and plan to go armed with everything I can possibly take, I'm taking no prisoners this time. Make sure you take a headache diary with you. This time I made a bar graph with my non pain days in white and my pain days in red using the KIP scale. Once printed out it was pretty scary for me to see it in print rather than over the pages of a diary. I'm hoping this will make him take note. Good luck with your visit.

Title: Re: 1st appt with neuro--?'s
Post by txbeck on Sep 18^th, 2007, 4:01pm

1) Have a written list of any potentially related symptoms
2) Have a written list of any meds, RX and OTC you are currently taking
3) Have a headache diary

Even an arrogant doc will pay more attention when you are obviously well-prepared, and even the most primitive CH diary (mine just notes the time of a hit to the nearest hour, with only head-bangers circled, but a cycle is 4 months of 3 to 11 hits per day) makes doctors sit up and take notice. No verbal history has that effect.

Title: Re: 1st appt with neuro--?'s
Post by Ctech on Sep 18^th, 2007, 5:28pm

I asked my neuro about the alternative treatment last year and he looked at me like I was a moron. A couple of weeks ago I called and asked his assistant about Zomig nasal spray and she told me that he (the Doc) new everything about CH and that he already prescribes the “best cocktail” that there is- needless to say, I don’t think I will be going back to him...

Take as much information about CH treatment with you as possible and don’t be afraid of asking about other treatments if you do not feel comfortable with some of the meds he prescribes.

My doctor wanted me to take five prescriptions at the same time; I did not feel good about doing that so I just got the 02 and it works well enough for me that I don’t even need to try the hard stuff ;)

The more prepared you are before you go in to see the doc the better off you’ll be – it always dumbfounds them when you know more about meds than they do [smiley=laugh.gif]

Good Luck!

Chris

Title: Re: 1st appt with neuro--?'s
Post by BarbaraD on Sep 20^th, 2007, 8:07am

INTERVIEW HIM:

Ask how many CH patients he's treated. What his knowlege of CH is. What he "normally" prescribes for CH. (If O2 ain't on the list -- you got a problem right off). What prevents and aborts he recommends. (If pain killers are there - get out!)

Your GP and your neuro should be able to work together on your treatment and both should be "willing" to listen to YOU.

I've been really lucky. My neuro has migraines and keeps up with most of the headache treatments and watches this board for anything we come up with. He's prescribing Red Bull now and told me it's working for a lot of his patients - migraine and CH (including him and his son who also suffers from migraines). He treats a LOT of CH patients. He knows about the studies on shrooms and is keeping up with Dr. Goodsby (msp). And the best part is HE LISTENS and knows he's not God.

If the doc starts telling you he KNOWS everything - get OUT and find another doc. Most people here have gone thru a number of neuros before they hit on the 'right' one. Keep looking till you find the right one.

Hugs BD

Title: Re: 1st appt with neuro--?'s
Post by Charlotte on Sep 20^th, 2007, 8:53am

Be prepared.

Type or write out your past health history and medications, herbs, supplements, diet, energy drinks, ice, whatever you have tried.

Have a descripton of a single hit, and how a cyle progresses and diminishes.

If you have an area you need extra help in interacting, let the neuro know. Mine made an escalation chart for me because I told him I had trouble in the past understanding how to use a medication.

I forgot to tell him I have trouble communicating verbally when getting hit, and was getting hit at first appointment, so some things were not covered because I had not written them down.

Also, remember that sometimes things work or stop working and then later work again, so don't refuse to try something because it didn't work in the past (unless it had side effects you could not live with, and sometimes that also changes).

It also helps to print out info on things you want to try - like kudzu, so you can discuss it with the neuro, doc, and pharmacist.

Find out how to get a copy of the neuro's report, as soon as possible, so you can see what they wrote. That will help you know what you need to addess again on a future appointment.

It is tricky, and I wish you luck. I'll be thinking of you. What time is your appointment?

Charlotte

Title: Re: 1st appt with neuro--?'s
Post by printspec on Sep 25^th, 2007, 1:36pm

Thanks everyone!

My appt tomorrow is at 3:15 EST.