My First Neurologist Appointment

[Trace]

As I stated in a previous thread I was referred to a neurologist with an appointment 4 weeks out.  Using some of the treatments suggested here (melatonin/energy drinks) I was able to start stringing together a few good nights sleep in a row and I felt more in control of these attacks and my life.  I cant thank you enough.  One of the first things I did was called the neurologist and requested to have my appointment moved up if there was a cancellation.  Yesterday I got a call saying that was the case and that I could be seen later that day.  Awesome!

I went in for basically an initial exam, ran me through all their questions about medical history, symptoms, blah blah blah.  The doctors checked me out and was fairly confident that I was experiencing CH but, this being my first cycle, didn't want to nail down a diagnosis just yet.  I told her about my own research and the treatments Ive learned here.  Mentioned psilocybin and she gave me the blanket response that she hadn't heard of it.  About what I was expecting but maybe it will encourage her to look into it further sometime. 

She put me on verapamil and wants me back for an MRI just to rule out anything more serious.  She claimed that she didn't expect anything but better to be safe than sorry.  She's right.  I would rather not do it but just in case, why not? 

I am still very interested in busting to see if I can break the cycle so I am not eating a handful of pills every night.  I just don't like that.  She offered some injection that I could do myself to abort an attack but I declined as the energy drinks have been doing a good job of that so far and at $2 a pop, it seems like the best solution for me.  Don't really care to inject myself if I can avoid it. 

Anyway, I am sure you all have already gone through this experience but I just wanted to report mine.  I am optimistic that I can get the beast by the throat and knock it out for good but this is a good first step. 

Thank you all for the support and the acceptance in this group.  If I can offer anyone any help at all please just ask. 

[CHfather]

Sorry to keep bringing this up, Trace, but did she prescribe oxygen????   If not, heed all the voices here and call her back and ask for it. 

Sure, the MRI is worth doing.  When you say "she put me on verapamil," does that mean you're going to start taking it?  Although there is debate about this, it is generally believed to limit the effectiveness of busting though probably not to completely block it.  What's the dosage?

Also, you might want to take her up on those injections (imitrex, I'm sure).  Although they're $2 a pop, you can easily get two or three uses out of each one, and people here have found that they work way past the supposed expiration date.  Might be nice to have for a possible future emergency.

I can pretty much guarantee you she's not going to look into psilo for treating CH. 

[Ajax]

Did you ask for O2?  I also hate needles, but i wouldn't travel far without the imitrex shot.  LIFE SAVER if you are hit hard!  Backup plan...  I hope Verapamil works for you, I had no luck.  careful with the next one they will peddle on you...Prednisone...  It was my only solution before this site.  Skip that one if you can.

[Bejeeber]

I'd like to echo what CHf said and the exact way he said it.  [Edit: oh and Ajax too - I now see he slipped his post in before mine]

I am optimistic that I can get the beast by the throat and knock it out for good but this is a good first step. 

Good attitude. A bit naive perhaps, but nice'n positive at least.  Now I'd suggest arming yourself to the teeth in preparation for fierce battle - just in case.

Personally, I'd be stockpiling the imitrex injections, assembling a high flow, 100% O2 rig today, and considering leaving the verap on the shelf while charging full steam ahead with the busting, which tends to be more effective, with less dangerous side effects (if there's no history of schizophrenia, etc.) than the verap.

If it seems like some of us are panicky reactionary paranoid alarmists - well in this case at least, we aren't. We're just highly aware of the extremely typical CH scenario, not just from our own experiences (30+ years for me), but from poring over thousands of reports from CH'ers. And we've had some great successes by way of very aggressive proactive beast fighting strategies and contingency planning. I know Ajax has become a master of the CH contingency planning, and like most of us has had to put it all to use in full force when hell has broken loose and the fit has hit the shan ;D, as it typically does. 

[Trace]

but did she prescribe oxygen????   If not, heed all the voices here and call her back and ask for it. 

She did not.  I will be sure to do that during my follow up. 

When you say "she put me on verapamil," does that mean you're going to start taking it?  Although there is debate about this, it is generally believed to limit the effectiveness of busting though probably not to completely block it.  What's the dosage?

I was curious about that.  I am going to start it.  She has me on 130mg and ramping up to 260mg after 5 days time.

I wasnt planning on taking her up on the injections but after reading more and more advice saying to develop backup plans for backup plans I am rethinking that.   

[Trace]

careful with the next one they will peddle on you...Prednisone...  It was my only solution before this site.  Skip that one if you can.

Thanks for the heads up on that one.  Prednisone did not come up in the conversation but I have read that on other sites while researching this.  It is something that I am vaguely familiar with but only because I used to have to give it to my dog. 

[Trace]

Good attitude. A bit naive perhaps, but nice'n positive at least. Now I'd suggest arming yourself to the teeth in preparation for fierce battle - just in case.

Naive?  Very possible but I do want to join your fight against the beast and help develop new ways to be more offensive than defensive.   

If it seems like some of us are panicky reactionary paranoid alarmists - well in this case at least, we aren't.We're just highly aware of the extremely typical CH scenario, not just from our own experiences (30+ years for me), but from poring over thousands of reports from CH'ers. And we've had some great successes by way of very aggressive proactive beast fighting strategies and contingency planning. I know Ajax has become a master of the CH contingency planning, and like most of us has had to put it all to use in full force when hell has broken loose and the fit has hit the shan , as it typically does.  

1102

Absolutely not.  I am eternally thankful for all the help I have received already from this group.  I understand the fact that I am very new to this and you guys and gals are the grizzled veterans.  I have every intention of taking the work you guys have already done and add to it as much as I can.  I am more concerned about piling medical costs to be honest.  I do not have the funds to build a serious stockpile of weapons to fight these attacks.  I have to be careful with my approaches to these treatments. 

[Bejeeber]

I do not have the funds to build a serious stockpile of weapons to fight these attacks.  I have to be careful with my approaches to these treatments.

Understood about the funds.

Imitrex for instance can be insanely expensive for those in the US without good insurance (hopefully that ain't you!).

Thank gosh the 'ol busting, besides being super effective, tends to be cheep cheep cheap, and the same can be true for O2 on a $$ per attack aborted basis.  8-)

[MoxieGirl]

Hi Again Trace,

So glad you got a quick appointment. Awesome!

My neuro was a bit hesitant to nail down a precise diagnosis too, but my 'clusters' aren't quite run of the mill. There are three types of headaches in the TAC group, Clusters, SUNCT and PH. SUNCT and PH are both much shorter than clusters, a few seconds to 10-30 minutes usually, but SUNCT and PH sufferers get hit a lot, 20 times an hour or more, or 20-30 a day. That type of thing.

My clusters are quite short, usually a few minutes to 15, sometimes 30 minutes. Rarely an hour. But I don't get the ultra high frequency as a SUNCT and PH. (apart from last Saturday, got hit about 30 times that day).

So, what do I have? My neuro is hard pressed to say. The meds that nearly always work on SUNCT patients did nothing for me.

So, I go on the theory that I just have very short clusters (although when they started 6 years ago, they were much longer).

Clusters are unique for each person, and often vary from cycle to cycle. So when you do find a solution, don't relax and think you have it sorted. The demon will find away around it.

I had an MRI too, my neuro said it was standard for cluster sufferers. Thankfully, he found my brain but nothing more.

The downside to having very short clusters, is that by the time I got any form of abortive in me, it would be over. So I'm trying to find the best preventative that works for me.

Hang in there, glad to hear you are getting some sleep.

MG

[Trace]

Clusters are unique for each person, and often vary from cycle to cycle. So when you do find a solution, don't relax and think you have it sorted. The demon will find away around it.

Dammit.  That seems to be the consensus.  I am going to work really hard to be preventative as well.  I have been looking around at the myriad of ways people try to fight these attacks and am going to threw as many as I can that are feasible for me. 

I do have one other issue too with all of this.  This is still all very new to me and I believe that this is my first cycle (hopefully cycle).  How do I know that what I am doing is working and not simply it being the end of a cycle?  I guess it is just a bunch of trial and error until you can nail down your own pattern. 

At the very least this is all extremely interesting to me.  Sorry I have to be my own guinea pig in all this but this is a world I never knew existed 30 days ago.  The term cluster headache never showed up on all the pages I had been reading.  Now I have all this new information and I still need to sort it all out. 

Still happy to report some real success with energy drinks and melatonin at night.  Heard this song yesterday and thought of all CH suffers around the world.  We cant let this define who we are ...

Take care of yourselves everyone but be sure to live when you're not having an attack. 

[MoxieGirl]

Hey again,

I've often wonder what life is like for an episodic. To be hammered for weeks and months, then have it go away for months or years. It seems like a very slow process to figuring out a pattern. But I can assure you, there will be a pattern, of sorts.

My first year, I got hit every Tuesday at 7pm, or 7:20pm, or both. I'd get hit other times during the week too, but I could count on Tuesday evening being a bad night. Then the pattern shifted to where I'd get a series of progressively worse clusters over a 2 week period, ending with an all mighty, off the scale attack. Then 2-3 weeks pain free, then it would start again.

I thought THAT was being episodic, then I found this site and learned what episodic really means. In truth, I've been chronic for 6 years.

OH, and my first year with clusters, I had a 7 month headache as well. Yep, 24/7 headache from Dec 31 2006 till July/Aug 2007. And don't even get me started on the migraines that can last 5-7 days.

But still, I come to this site and read stories from people that break my heart, and make me thankful for how good I have it.

Hugs

MG

[Trace]

I've often wonder what life is like for an episodic. To be hammered for weeks and months, then have it go away for months or years. It seems like a very slow process to figuring out a pattern. But I can assure you, there will be a pattern, of sorts. 

Hopefully I will be able to let you know.  Who knows?  For all I know this could simply be the beginning of chronic attacks for the next 30 years. 

OH, and my first year with clusters, I had a 7 month headache as well. Yep, 24/7 headache from Dec 31 2006 till July/Aug 2007. And don't even get me started on the migraines that can last 5-7 days.

OH, and my first year with clusters, I had a 7 month headache as well. Yep, 24/7 headache from Dec 31 2006 till July/Aug 2007. And don't even get me started on the migraines that can last 5-7 days.

I have no reaction to that.  I dont know what to say. 

I come to this site and read stories from people that break my heart, and make me thankful for how good I have it.

I am thinking the same thing but my message to them and you is that things are getting better.  Your numbers are growing and there will be more voices heard.  Your suffering will not be in vein.  We will continue the efforts to get recognition in the hopes that future suffers dont have to deal with what you have gone through. 

[ClusterTown]

energy drinks have been doing a good job 

Finding out about the use of energy drinks to combat cluster headaches pretty much changed my life. It really does work for me too.