CaroleA wrote on Nov 1^st, 2011 at 1:53pm:


Make a list of all the questions you want to ask, points you want to raise and what results you'd like from the appointment. It's so easy without a list to forget to ask something!

Hope it goes well and you get the outcome you're looking for.

THank you all so much for your advice and support and help with my list of questions and things to bring.  I have been keeping a diary since this last cycle started, which is the worst by far I've had in 5 years.

I do have a list of questions, lots to do with meds (not a huge pill person, but I'm learning quickly).  Oh, just started to have weird dreams last night (which was PF) so I will ask about that and the Melatonin.

Anxious to get this appointment under my belt and then my new family physician on Thursday.

I want to be a science project!

Free samples!  Check! 
Off to the head doctor, will have a full report later today 

Had one of those crazy busy days.
So here's the scoop.  The neuro dr was very understanding and supportive, and seemed to be quite knowledgeable on the topic of CH's.
Gave me a thorough examination, to rule anything else out, and I'm very healthy, heart rate, blood pressure, eyes, etc..

Was very interested when i told her about this message forum and all of the things I have learned i.e. caffeine at the onset and even suggested I switch from espresso type coffee to a breakfast blend as espresso is lower in caffeine.

She recommended keeping me on the dose of verapamil that I"m on now, 240 mg, as it seems to be working but she also suggested that I could be at the end of my cycle.  But she assured me that many people have been successful in preventing outbreaks on a 240mg dose.

So far so good......she talked about triptan drugs and asked me how I felt about it and I felt that I would like to stick with the verapamil for now (fingers crossed and knocking on wood) but she left the decision up to me.  I'm kind of a non-pill type of person and felt comfortable without prescriptions for that.

Then we talked about oxygen.  She was honest and told me that she has only heard of people being administered oxygen when they present themselves at emergency.  Something I don't want to do mainly for the reason is that I would either have to call 911 or ask a family member to drive me to the hospital in the middle of the night.  I highly doubt I could get behind the wheel of my car in the middle of a CH.

So she is going to look into the O2 and will follow up with me.  Renewed prescriptions for 3 months for the verapamil and another appointment in 3 months to see her.

But I think I am going to go the route of getting it myself.  I have no idea if this is the end of my cycle and when this beast will rear its head again.  Tonight perhaps?  Tomorrow night?  And I just can't deal with this kind of pain much longer.  Not only that but the stress of going to bed and worrying about whether or not I'm going to wake up in pain is disrupting my sleep.  I'm seeing pretty much every other hour on the clock most nights.  Even the PF nights.

So she prescribed something for sleep "Elavil" a very low dose 10mg.

All in all, with the exception of not really getting anywhere with the O2, I think it was a good visit, if anything to have this validated by a specialist and also to know that there is nothing else wrong with me physically.

So tomorrow is my first appointment with my new family doctor.  I will talk to her about O2 also and see where I get with that.

Thanks all for helping me with questions and advice for my first visit.

Hoping for a PF night tonight.

Mike NZ wrote on Nov 2^nd, 2011 at 11:00pm:

I agree with exactly what he said, congrats, and good luck tomorrow

That's great news, I know it can seem like a long, grueling journey, but all the work you're putting in now pays off big time. I'm sure from reading the boards you're catching on to the fact this will probably hang around the majority of your life. The key is always being prepared. Get the oxygen now even if your cycle is dying down. become familiar with how to obtain everything you'll need and how to use it.

When my cycle starts I have 2 phone calls I make. To my neuro to make another appointment. With this first call he renews my 02 prescription and any med prescriptions I'm low on. My second call is to APRIA to get more tanks delivered. I have my own demand regulator, so off cycle I just keep one E-Tank, which gathers dust in my garage. On cycle I keep an 8pack of tanks handy. So literally the same day my cycle starts back up, sometimes the next day, I'm set back up again to battle the beast.

Joe

Hi Carole: I am so sorry that you have to deal with the BEAST, (and some times almost as bad as the BEAST, living with the FEAR OF THE BEAST!!!)  But selfish me it is nice to see someone from the Ottawa area on the website.  I lived in Ottawa for about 5 years and just moved to Brockville about 7 moths ago. but still get up to Ottawa 4 or 5 times a month.

I have lived with the BEAST for 15+ years now,  I would not be much help to you with the treatment and medical side of things but  would like to just offer you what ever support I can. Some times it is just nice to talk to someone who KNOWS what you are going through first hand because they have been there.

may you have many many pain free days in your near future   Ed  Arnycay

CaroleA,
So wonderful to read you are PF these past 5 nights.

Whatever you are doing...avoiding triggers, etc...keep it up for AT LEAST 2 weeks of being PF, then you might consider talking with your doctorS about reducing meds, and trying your son's hypothesis.

Congrats

I have watched "pay it forward", it's one of my all time favourites actually, so I'm not going anywhere

That's great news Carol. As to the nitrate/MSG triggers, smart to avoid them on cycle. It's like alcohol for me, on cycle it's a nasty trigger. Off cycle, doesn't bother me at all. I do the "Beer Test" after about 2 pain free weeks to confirm the beasty is really gone. Hoping he's left for this cycle.

Joe

LasVegas wrote on Nov 7^th, 2011 at 11:47am:

WOW, 9 nights PF   You must feel ecstatic! 

Personally I would wait as I noted previously, but that's your decision.  Good Luck!

Took your advice Vegas and decided to have another nitrate free dinner and opt for a great nights sleep

If it's not broke, don't fix it