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
Honestly, I'd Rather Not Be Here (Read 912 times)
Diogenes
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 1
Honestly, I'd Rather Not Be Here
Aug 20th, 2009 at 12:47am
 
...but I am.  I first found this site three years ago.  (See if you can guess my remission periodicity?)  And here I am again seeking more information on this curse.  I'm grateful that this site exists and am happy to say that there is indeed much more information available on the Internet about cluster headaches than there was three years ago.  This is the first time I've registered here, however.  Greetings and salutations.

Long story not so short  (but probably familiar): Had these headaches since high school.  At the time (and subesquent bouts) the best the doctors I visited could come up with was that I might need glasses.  When the optometrist and/or ophthalmologist would test, they'd have a difficult time understanding why a GP thought I needed my eyes tested.  (One unscrupulous optometrist did get my parents to buy glasses for me, however.  The prescription was so weak as to be laughable.  My eyesight is fine.)

It didn't occur to me at all that this was recurring on a regular pattern until 2006.  By then I was 36 and had been married for 12 years.  It was my wife who said "wait a minute!"  She didn't follow that with "dummy", but you could see it in her face.  "Didn't you go through this when you were in Kuwait in 2000?  And again in 2003 when you quit drinking?"  Well, I had, and there I was in 2006 with a 3 year period to tie things together enough that I found some information on cluster headaches. 

Here I am in 2009, and although I had completely forgotten about them, sure enough at the end of July they came back again.  I'm at (what I hope) is the end of the cycle soon (seems to be usually 5 to 6 weeks) and I consider myself lucky to have such a long remission period. 

Of course, this time will be the first time I've gone to a doctor and asked about cluster headaches and there was some recognition of what I was talking about.  The first thing the doctor tried was Prednisone over a 5 day regimen.  No change.   So...oral Imitrex seems to help shorten the duration to 30 minutes or less if I take it right away - which is a tremendous boon, as in that time the headache doesn't seem to reach full potential for me.  But, the doctor isn't too keen on me taking up to 200mg of Imitrex a day - every day - for over a month.  So he's started me on Verapimil.  I'm into my 6th day on that and so far it hasn't done a damn thing.

I'm worried about 2 things:
  • This is the first time with prescription meds, and it's screwing up the daily cycle.  8 pm, 11 am, 2 am, whenever.  I used to be able to count on one in the evening and the occasional bonus in the wee hours of the morning.  Now, I have no idea when the next one will come.
  • What if the drugs actually do something to lengthen the cycle?


Does anyone have any experience with Imitrex or Verapimil messing up or prolonging the cycle?

Thank you all for the kind support you have offered each other and those of us who have just been reading from the sidelines (until now) as well as all the wonderful information you have to share.

Stay strong.

Edited to add Prednisone information.  That was so ineffective I forgot to include it the first time.
Back to top
« Last Edit: Aug 20th, 2009 at 1:22am by Diogenes »  
 
IP Logged
 
JustNotRight
CH.com Sponsor
***
Offline


CH version 15.0.8 member
since 2005 aka GingerS224


Posts: 1300
Wilkes-Barre, Pa (USA)
Gender: female
Re: Honestly, I'd Rather Not Be Here
Reply #1 - Aug 20th, 2009 at 6:50am
 
Glad to meet you Diogenes even under these circumstances.  Welcome !!

Any time you add or change something medication wise you are bound to see changes in the beast.  Keep that in mind.  It can change on you even without adding anything med wise.

I am on both verapamil and imitrex injections both help. On occasion tho the Imitrex can cause a rebound CH hit, it sucks but after a while you get to the point where you can tell the difference and see a milder intensity of the second hit, I've been known to swear my way through the milder ones.

You'll also need to watch out for things in your diet that may be triggers, alcohol is a biggy even just a beer.  (I miss the occasional dark beer.)  I can't even have 1/4 cup of any alcohol if I do,  I get hit hard.

We are all here to help in anyway we can I hope some of what I said helps.  Remember we are all in the same boat with this monster.

PFDAN to you!
Back to top
  

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
An eye for eye only ends up making the whole world blind.
M.K. Gandhi

If you are going through hell...Just keep going
WWW JustNotRight gngr.stewart GingerS224  
IP Logged
 
wrngwae
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 13
LaPorte, IN
Gender: male
Re: Honestly, I'd Rather Not Be Here
Reply #2 - Aug 20th, 2009 at 7:24am
 
Diogenes, welcome. i too am new to this and have had a "change in my schedule since my meds. it too remember having these headaches in the 90's and went to an eye doctor for the same lame prescription infact i think my wedding pics have me with glasses. but i just got treatment monday for my ch and the 02 is great check it out on the left tab. it is the 02 bible i tell my wife. i printed it out and read it dailey to see if there is anthing i missed,,,,,,yea daily,,lol. but i am taking the imitrex nasal spray and it will abort a ch in about 10 min for me if 02 dont. i have read and heard that the imitrex injsctable is even faster so i think im gonna try. i have a needle thing (DONT LIKE THEM) and the way im told is it is like a pen you put on your leg or arm and push a button and hold for 10 seconds,,,,,dont sound too bad. right. so in closing welcome and read read read. infact  i am here daily since i found this place. love it here. wishing you pain free days,,,,,and nites since that is when i seem to be hit the most. the lil monster knows im sleeping and my guard is down.
Back to top
  

Laporte, IN
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: Honestly, I'd Rather Not Be Here
Reply #3 - Aug 20th, 2009 at 9:42am
 
Dosing may have been the issue with the Pred. Starting point is generally 60mg but up to 100mg. If you started at the low end, consider asking the doc to do again with a higher starting dose.

This protocol for Verapamil has become widely accepted. Again, dose is very important. Don't make judgments until you have give it 2-3 weeks AND made upward adjustments, as needed.
---------

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
Back to top
  

Bob Johnson
 
IP Logged
 
BarbaraD
CH.com Alumnus
***
Offline


Hugs to ya


Posts: 8333
Douglasville, TX
Gender: female
Re: Honestly, I'd Rather Not Be Here
Reply #4 - Aug 21st, 2009 at 12:23pm
 
Read the O2 info on the left. It's been a lifesaver for about 70% of us here and we PUSH it (the reason for the O2 Pusher Buttons).

I very seldom use any other abort except O2, but it has to be on a high flow rate with the CORRECT mask. One of our O2 guru's will be along to "educate" you on that, but read and print out the stuff on the left to take to your doc when asking for it. I used it "wrong" for years. Works better when you do it "right".

Welcome to Clusterville. We're here to help and we DO know where you're coming from - we're all in the same boat...

Hugs BD Kiss
Back to top
  

What don't kill ya, Makes ya stronger!
 
IP Logged
 
Lawrence
CH.com Veteran
***
Offline


There WILL be a cure


Posts: 163
Merrillville, Indiana
Gender: male
Re: Honestly, I'd Rather Not Be Here
Reply #5 - Aug 22nd, 2009 at 4:07pm
 
Even tho I haven't been on this board for a long time, i've been dealing with this monster for 20 years...to help answer some questions you may have about the Imitrex and Verapamil....and triggers and such....
from my own experiences..... Cheesy

I have known Imitrex injections to lengthen a cycle, if taken too frequently. I have my clusters about 3 months every year. So I stock up on my injections in my "off season", or my remission period. So when my cycle hits, I have enough, but I only use them when i'm at work, or if i'm out with friends in public or shopping or something.
If im at home, I can use O2 to abort the bastard, or if the kip is low enough, I can deal with the hit by throwing on my ipod at maximum volume.

My doctor put me on Verapamil, 600 mg daily.
300mg in the morning, and 300 mg at nite.
Personally, i find it more effective if I take
120 mg increments 5 times a day.

The verapamil has never affected my cycles in a negative way.

Also, if I have a day of "shadows".....that nite before I go to bed, 10 minutes of oxygen rite before I go to sleep almost guarantees I wont be awaken by the beast in the middle of the nite.

Menthol Cigarettes are bad triggers for me. I had to switch to non-menthols Angry. I wasn't ready to quit smoking yet, when i'm ready to quit i want to do it on my own terms and not because of some cluster bastard Angry
pardon my french. Wink

know some of your triggers, keep a journal....be prepared.....stock up on the things that help....

some of my triggers are
chocolate
milk
bananas
cheese
menthol cigarettes
sleeping on the affected side of my head
stressful situations
breathing through my nose too much

Back to top
  

Weapons Check:
O2 grenades--Verapamil hollow points--
Prednisone Sniper Rifle--Rivea corymbosa Nerve Gas
 
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!