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
I'm new here! (Read 3425 times)
scrub_nurse
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 4
I'm new here!
Aug 25th, 2008 at 12:27pm
 
goodday everybody,
as probably most of you I suffer from CH, and it's chronic ,so I'm on verapamil dayly (180mg a day). Oxygen has never helped me.
I'm not sure it occurred the first time when I started on verapamil, but I have a question for you,maybe someone recognises my problem. Several times a day, my face turns very very red, It's like I am blushing, but it happens without a reason. During this "blushing" my face feels warm, yet hot.
And the last few days/weeks I notice I keep feeling a light CH, so I think I have to increase my dosis verapamil  Sad
I am very very happy, the verapamil is helping me and I'm fearing the day it doesn't work anymore  Cry
Back to top
  
 
IP Logged
 
Chad
CH.com Hall of Famer
*****
Offline




Posts: 738
Emmaus, PA
Gender: male
Re: I'm new here!
Reply #1 - Aug 25th, 2008 at 12:37pm
 
Welcome scrub_nurse.  I'm new too and i'm only replying because I get warm/hot and blushy on the side of my attacks.  I'm not chronic though so this only happens during my cycles.  I don't take Verapamil
by choice.  I try to stay as natural as possible, but if I was chronic I would probably consider it then.  I'm sure some others will be on here to share info about the blushing.  I know one thing, I was in the GP office during a attack once through my cycle and she said, my ear was even swollen as well as that whole side of my head it seemed.  I had every symptom and she was the original doc I had that suspected CH, however she isn't a specialist and sent me to a neuro that does specialize in it.  I wish I would have had that attack in front of him so he could have studied me a bit, LOL!
Back to top
  

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!
 
IP Logged
 
DennisM1045
CH.com Alumnus
***
Offline


One wave at a time!


Posts: 3437
Haverhill, Massachusetts, USA
Gender: male
Re: I'm new here!
Reply #2 - Aug 25th, 2008 at 12:39pm
 
Hi Scrub Nurse!  Welcome to the nut house  Cool

I use 400mg of verapamil and do experience the facial flushing you describe.  Mine is typically on one side of my face and is NOT on my cluster side.  I had this before I ever took verapamil so I don't think it has anything to do with the meds.

I know you said O2 doesn't work for you, but can you please describe a bit about how you used it?  Flow rate, mask type, duration, technique?  I'm always curious about why it doesn't work for some.

-Dennis-
Back to top
  

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
IP Logged
 
ClusterChuck
CH.com Alumnus
***
Offline


The BEAST rises again,
and again, and again,
and .


Posts: 5394
Greenville, North Carolina
Gender: male
Re: I'm new here!
Reply #3 - Aug 25th, 2008 at 12:46pm
 
 First of all, WELCOME HOME!!!

Now, as to some of your comments:
scrub_nurse wrote on Aug 25th, 2008 at 12:27pm:
Oxygen has never helped me.

Are you sure you are using it correctly?  I find that most that say it does not work for them are either not using it correctly, don't have the right equipment, or have defective equipment.

Also, just because it did not work in the past, try it again, and again, and again ...  In the past eight or so years that I have been using oxygen, there have been times when it does not work, or certain hits that it does not work on, BUT, I will take each hit that it works on, and praise it!  Even if it only works on 33% of them, that is 33% fewer that I have to suffer through!


scrub_nurse wrote on Aug 25th, 2008 at 12:27pm:
Several times a day, my face turns very very red, It's like I am blushing, but it happens without a reason. During this "blushing" my face feels warm, yet hot.

That sounds like it could be a very low level hit, if it is related to clusters at all.  A "shadow".  You might want to mention it to your doctor, as any changes should be brought to your doctor, but I would not be overly concerned about it.


scrub_nurse wrote on Aug 25th, 2008 at 12:27pm:
I'm fearing the day it doesn't work anymore

First of all I am SO happy that you have a preventative that works for you!  I LOVE hearing that!  But as far as fearing the day that it does not work, don't.  Worrying will not help you at all.  There is nothing you can do about it.  Just enjoy it WHILE it is working for you, and maybe it will ALWAYS work for you.  

If it DOES stop working for you, there are other medications and treatments out there.  So don't worry!  Enjoy life as it is now!

Again, welcome aboard!

Chuck
Back to top
  

CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
ClusterChuck  
IP Logged
 
scrub_nurse
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 4
Re: I'm new here!
Reply #4 - Aug 25th, 2008 at 12:53pm
 
Because I am a scrub_nurse it's very easy for me to use oxygen, right the second the headache begins. I used 7-10ltrs for 20 min and I used a mask that's used to provide a patient some oxygen, I don't know the name of the mask. But no respons what so ever, nothing. I used it in a quiet dark operating room, hoping it would work.
During an attack my face is red, my tongue feels strange, numb, my eye is red, my nose is dripping, my eyelid is droopy, and right before an attack,maybe even the day before I am very snappish and touchy.
My GP is incredible, he always took me seriously and he diagnosed my 2 kinds of headache, I suffered from migraines as well as CH, (once I was at his office during an attack, I said to him I can't take this anymore and I cried my eyes out..)He has never sent me to a neuro, he did it all by himself  Smiley
Back to top
« Last Edit: Aug 25th, 2008 at 12:56pm by scrub_nurse »  
 
IP Logged
 
ClusterChuck
CH.com Alumnus
***
Offline


The BEAST rises again,
and again, and again,
and .


Posts: 5394
Greenville, North Carolina
Gender: male
Re: I'm new here!
Reply #5 - Aug 25th, 2008 at 12:58pm
 
Try oxygen at a higher flow rate.  Many say that 15 LPM is the minimum, and yet others use a rate of 25 LPM to get the results.

The mask we use is called a non-rebreathing mask.  It is a mask that covers your mouth and nose, and has a bag attached to it.  Here is a picture of one:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Let us know if that helps.

Chuck
Back to top
  

CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
ClusterChuck  
IP Logged
 
scrub_nurse
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 4
Re: I'm new here!
Reply #6 - Aug 25th, 2008 at 1:03pm
 
that's the masked I used.
But because I'm chronic I use verapamil dayly  so I cannot try the oxygen, because I don't have the attacks.

But when I do get an attack I will definately try it! Thanx!
The so called shadows, what are those? I only know the term aura, I don't have them. That's when you see stars of flashing light or something like that.
Back to top
  
 
IP Logged
 
DennisM1045
CH.com Alumnus
***
Offline


One wave at a time!


Posts: 3437
Haverhill, Massachusetts, USA
Gender: male
Re: I'm new here!
Reply #7 - Aug 25th, 2008 at 1:10pm
 
For me, shadows are anything from partial symptoms (tearing eye, stuffy nostril, ...) to pain on the cluster side that doesn't develop into a full blown hit and persistents for hours.

Everyone is different though.

-Dennis-
Back to top
  

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
IP Logged
 
Chad
CH.com Hall of Famer
*****
Offline




Posts: 738
Emmaus, PA
Gender: male
Re: I'm new here!
Reply #8 - Aug 25th, 2008 at 1:38pm
 
scrub_nurse wrote on Aug 25th, 2008 at 1:03pm:
But when I do get an attack I will definately try it! Thanx!
The so called shadows, what are those? I only know the term aura, I don't have them. That's when you see stars of flashing light or something like that.
An "aura" is what migraine sufferers get during their onset.
Clusterheads get shadows. 

A shadow to me is a low level hit (kip 1-3) CH or "onset"
just letting you know the beast is still present and he may come at full force or just back off.  When I get shadows, I prepare to fight with the weapons I have.  Sometimes he wins, but I usually win.  When I get shadows, my first weapons of choice is the 4-way nasal spray and a Monster energy drink.  While in cycle, the CH comes at the same time each day, so during the day I take 50mg of Imitrex an hour before the suspected hit.   I usually get 2-3/day.   

I've actually taken Imitrex (orally) where a shadow came on about 10 minutes later after that, but it went away about 15 minutes later.  It's all timing with your abortive techniques, whatever it is you use.  I'm going to neuro to get O2 next to keep handy at home.  I'm very new here, but I have read a lot of what Chuck posts and he seems to be the master of O2.  I thank him for that. 

Read this whole site.  You'll be surprised what others do to fight the beast.  You just need to find what works for you.

Good luck  Smiley
Back to top
  

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!
 
IP Logged
 
mezza
CH.com Alumnus
***
Offline


I love YaBB 1G - SP1!


Posts: 415
north carolina
Gender: female
Re: I'm new here!
Reply #9 - Aug 25th, 2008 at 4:20pm
 
Verap and prednisone, cause my face to become beet red at times, face hot etc.  Sort looks a little funny huh?


I take 680 mg in cycle.  HOw do you know you are chronic? 

Welcome-

kelly
Back to top
  
 
IP Logged
 
Karl
Ex Member



Re: I'm new here!
Reply #10 - Aug 25th, 2008 at 6:46pm
 
first welcome home you are in good hands here.
the only thing i can add is yes i get flush and the base of my skull swells on the side of the hit. i also sweat quite a bit.
my shadows are with me all day in cycle and generally are a promise of whats to come, I say the shadow knows but like others it gives me a chance to gather the weapons for the fight. Cool
Back to top
  
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: I'm new here!
Reply #11 - Aug 26th, 2008 at 8:48am
 
I suspect the flushing is a more intense expression of one of the effects some people have during an attack: face sweating, tearing, nasal congestion. All part of the neurological response of CH.

Suggest you talk to your doc about trying this med as an abortive. Number of us have had good restults, low per dose cost, and, being a pill, easy to taken when you are at work/in public, etc.

----------

Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.



--------------------------------------------------------------------------------


Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
Back to top
  

Bob Johnson
 
IP Logged
 
thebbz
Ex Member



Re: I'm new here!
Reply #12 - Aug 26th, 2008 at 1:19pm
 
Hello and welcome. The 02 is an abortive. The verap is a preventative.
Treatment options are subject to sufferer approval. Save yourself some pain. Look into the 02 further. Shadows is  the demon parked and ready for action. So your GP has diagnosed chronic cluster/migraine? No 02 for an abortive? Chronic is defined as continuous headaches for 12 months with no break of more than 2 weeks. I would want a second opinion. It seems chronic intractable clusterheadache is treatable with verapamil? So if verapamil provides relief are you chronic?
all the best
thebb
Quote:
ut because I'm chronic I use verapamil dayly  so I cannot try the oxygen, because I don't have the attacks.


I guess I dont understand Undecided
Back to top
  
 
IP Logged
 
scrub_nurse
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 4
Re: I'm new here!
Reply #13 - Aug 27th, 2008 at 1:30pm
 
my attacks became at some point chronic, so my GP prescribed verapamil, it worked, my CH disappeared. Then I had to stop after I believe it was 2 weeks, for some days to see if the headache came back, and it did, in all his glory. So I started the verap again. Then at different moments I had to stop to see if my headache came back, and every time I stopped my headache was back. So my GP said, keep taking your verap, and maybe you can decide at some moments to see if your headaches come back. After some time I tried, and within some time again, the headache was back. So now I take verap every day, and I don't have any attacks, but I keep feeling, I guess I should call it shadows, at the background that it is there.
I hope you understand now. English is not my native language (I'm Dutch) be I'm not very clear.
Back to top
  
 
IP Logged
 
Jeannie
CH.com Sponsor
***
Offline


Live, Laugh, Love....


Posts: 2333
St Louis, Missouri
Gender: female
Re: I'm new here!
Reply #14 - Aug 27th, 2008 at 2:04pm
 
Hi!  Welcome!

Your English is great!

I am episodic.  I take Verap only while in cycle.  This cycle I had constant shadowing even while  taking it.  Then they subsided.  I tried going off the Verap only to have the shadows come right back.  How long has it been since you've been trying to stop the Verap?   I couldn't stop mine all at once.... I had to taper off. 

Jeannie
Back to top
  

"It's all a grand illusion when you think you're in control." ~ Kenny Chesney
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: I'm new here!
Reply #15 - Aug 27th, 2008 at 8:34pm
 
It's great that the verapamil is working so well as a prevent. I use lithium the same way. After 4 weeks of pain free time, I start to wean off of it. If the headaches come back, I go right back on it again!

Would your doctor consider prescribing the oxygen to have on hand the next time you try to wean off of the verapamil? That way if the headaches do come back, at least you're not sitting there defenseless!

Guiseppi
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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!