Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
Visit to New Neurologist (Read 782 times)
Billie
CH.com Junior
**
Offline


I Love CH.com!


Posts: 62
Maryland
Gender: female
Visit to New Neurologist
Jan 28th, 2010 at 1:08pm
 
I finally saw my new neurologist today, and it went really well.  He knew right away that my headaches were cluster headaches, and he said I was the 1st female patient he has seen in 6 years with these type of headaches.  I thought that was pretty interesting.  I knew 100% after doing research and reading on this site that my headaches were cluster headaches, but I feel like a big weight has been lifted off my shoulders to finally have a physician know what they are doing after 15 years and put the correct diagnosis to these monstrous headaches.  He also commented on how it was a shame it took that long.  I thanked him about a million times.  He already has a treatment plan lined up for me, and in case that fails he has a backup planned. 

Anyway, I thought I would share my experience with my new neurologist with you because I wasn't sure how it would go, but I am extremely relieved that he knew about cluster headaches, and I am also happy to say that I no longer have the diagnosis of migraines (which I have always doubted because of how different my headaches are).
Back to top
  
http://www.facebook.com/smithbilliejoe?ref=tn_tnmn  
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: Visit to New Neurologist
Reply #1 - Jan 28th, 2010 at 1:11pm
 
Care to share what those treatment plans are?
Back to top
  

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
IP Logged
 
Billie
CH.com Junior
**
Offline


I Love CH.com!


Posts: 62
Maryland
Gender: female
Re: Visit to New Neurologist
Reply #2 - Jan 28th, 2010 at 1:21pm
 
Sure, I am currently on verapamil ER at a dose of 120 mg a day.  He said to stay on that since it is working so well with no breakthrough headaches (just shadows), but if I am finding that I am having a lot of unexpected breakthrough headaches to start taking 2 a day (240 mg a day).  If that is ineffective, he is going to put me on lithium.  He also called me in a prescription for something for breakthrough headaches, something he said was effective for cluster headache patients.  I am unsure of the name right now.  I will let you know when I pick it up.  I believe it's called indomethacin, but he called it in directly from the office, and I just got home and didn't pick it up yet.

I didn't bring up the O2 thing this time.  I let him come to the diagnosis and acted like I've never heard of cluster headaches before because if he seemed no good, I was going to go to a specialist on the list on this site.  I do, however, plan to bring it up at my next appointment in 3 months.  I plan to be in remission within the middle of next month anyways for a year (unless all goes off course).  So, I should be good until my visit with him.

He told me to research the internet.  So, I will let him know I did and bring it up that way.
Back to top
  
http://www.facebook.com/smithbilliejoe?ref=tn_tnmn  
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: Visit to New Neurologist
Reply #3 - Jan 28th, 2010 at 1:32pm
 
Two things:

1. The immediate release form of verapamil has been shown to be far more effective for CH patients than the slow release. I'd ask him to try that before adding lithium to the mix.

2. Too bad you're going to wait three months for O2. I'd be on the phone to him this afternoon. Tell him you were so excited by your visit with him that you've done your research.
Back to top
  

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
IP Logged
 
Billie
CH.com Junior
**
Offline


I Love CH.com!


Posts: 62
Maryland
Gender: female
Re: Visit to New Neurologist
Reply #4 - Jan 28th, 2010 at 1:48pm
 
Good idea about the O2.  I am still just happy to finally have answers my brain is not thinking fast enough, lol.  I'll have to do that or possibly print off the paper from this site and drop it off at his office. 

Oh, so there is a difference between the extended release verapamil and the immediate release?  This is so confusing, all these different types.
Back to top
  
http://www.facebook.com/smithbilliejoe?ref=tn_tnmn  
IP Logged
 
Jimi
CH.com Moderator
CH.com Alumnus
*****
Offline


Don't feed the moderators


Posts: 4925
Madisonville, KY
Gender: male
Re: Visit to New Neurologist
Reply #5 - Jan 28th, 2010 at 1:58pm
 
Brew is absolutely right on both points. Verapamil appears to work better than Verapamil ER (extended release) for cluster patients.

As far as 02 goes. it is the first thing that most knowledgeable neuros should prescribe. For most it will knock a headache down in 5-10 minutes. Why suffer for an hour when one breaks thru when you can make it disappear in 5 minutes?

If you choose to ask him for 02 make sure the regulator is at least for 15lpm and use a non-rebreather mask.

Just wanted you to have this information in case the ha's start breaking thru the verap.
Back to top
  

I am convinced that life is 10% what happens to me and 90% how I react to it.
http://www.facebook.com/home.php#!/ Hendrix1473  
IP Logged
 
Billie
CH.com Junior
**
Offline


I Love CH.com!


Posts: 62
Maryland
Gender: female
Re: Visit to New Neurologist
Reply #6 - Jan 29th, 2010 at 8:00am
 
Yeah, the medication is indomethacin.

Another thing I want to mention, as I saw some posts on this topic before...  I asked him about the cracking/popping/air bubble-sounding noises in my head and what would be causing this.  He explained that since my eyes fill up with water and my nose gets congested during a headache, what I am hearing is most likely fluid/congestion moving around in my sinuses.  He said I probably also noticed my ears popping a lot, which I have, and that's because they also fill up with some fluid.
Back to top
  
http://www.facebook.com/smithbilliejoe?ref=tn_tnmn  
IP Logged
 
Callico
CH.com Hall of Famer
*****
Offline


Author of "Stranded at
Romson's Lodge


Posts: 4916
Aurora IL
Gender: male
Re: Visit to New Neurologist
Reply #7 - Jan 29th, 2010 at 6:09pm
 
I second what Brew and Jimi said, with one caveat.  I would suggest you try to get 25lpm on your regulator.  You don't have to use that much if you don't need it, but for many of us the difference is about 5 mins to 15 - 10 mins. 

Jerry
Back to top
  

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
Jerry Callison  
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!