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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> new to the site and am fellow Ch episodic sufferer
        
(Message started by: marcelonyc on Nov 14^th, 2004, 10:45pm)

Title: new to the site and am fellow Ch episodic sufferer
Post by marcelonyc on Nov 14^th, 2004, 10:45pm

I started to cry as I read the stories of your homepage. I am @ beginning of cycle. Not sure how long it'll last are how hard or how frequent nor how intense. They are spotty and inconsistent now. Of course did not want to admit that I was wking a few weeks ago in the mid of night withthat familiar tingle and panic. The pain had not officially begun. It wasn't until last week in class after the prof. turned the lights on in class that i wanted to scream and hide under the seat and tell everyone to shut up.

And since I have admitted to myself that they have arrived i am now able to prepare. Or am I??? yesterday had 4 attacks, today 2. I have made appointment with my neuro but none available until end of month. Was able to get my gen Physician to prescrbe immitrex nasal spray 20mg. In reading some of the posts I became alarmed by the suggested 12mg p day. my neuro has not told me this. I am only allowed 6dos p/ 2 wks and max 2 p/ day. i have horded a few boxes from my last bout which started around the same time 2 years ago and lasted for 3months. I have not tried oxygen nor the immitrex injections. I have Medicaid and my neuro last time informed me thst it was nearly impossible to get oxygen w/ this insurance.

At their worse i got 8 attacks in one day for a few days lasting up to 2 hours each. Some of the headaches seemed to merge from one to the other in between passing out from exhaustion.

I am very afraid. i have started school which is very intense. I have not been able to closely examine what the possible triggers could be, but I would imagine that the 7 classes i take don't help.

I live in the NYC area. I am 34 yo. got my first ch's in late teens. As i am growing older, they seem to be progressing in intensity. Last bout also tried Prednosone in high dosages for 1 month and i balooned as well as went crazy w/ rage. the next thing I nearly tried was Lithium but i got scared.

And it feels incredible that you guys exists. I am so sick of people asking me to try chamomille tea or rubbing that stupid part of my hand which corresponds to a pressure point...

Thank you [smiley=huh.gif]

Title: Re: new to the site and am fellow Ch episodic suff
Post by vig on Nov 14^th, 2004, 10:49pm

first, the 12mg limit is for shots which come in 6mg sizes or 2 a day...
it doesn't equate to the nasal spray doses of 20mgs.
so don't sweat it.

Read up on the stuff on the left side. There may be more things for you to try. Don't despair.

Title: Re: new to the site and am fellow Ch episodic suff
Post by Renee on Nov 14^th, 2004, 11:07pm

Read and read more about the o2 and then confirm again your coverage for o2. It works best for most at 15 liters per minute for 15 minutes to abort clusters.

Welcome to the family!

Title: Re: new to the site and am fellow Ch episodic suff
Post by marcelonyc on Nov 15^th, 2004, 12:34am

Thanks Vig and Renee and the whole community for getting together and supporting one another. It's odd to think that this devil is what bonds this community. Will be going to sleep in a bit. Hope the devil don't get me too much. I have been reading since yesterday on this site. Did not want to be hasty and jump in on the dialogue w/o knowing the terminology. Tomorrow I call a new neuro at Columbia Presbyterean Hospital in NYC. He seemed pretty sympathetic. I'll ask about the oxygen.

Title: Re: new to the site and am fellow Ch episodic suff
Post by Ronny on Nov 15^th, 2004, 1:48am

Hi,

I too think they are progressing in intensity and time over the years.
Did you try verapamil yet (only with Dr. advice)
Oh, quit rubbing your hand, it will only wear of your skin ;)

Ronny.

Title: Re: new to the site and am fellow Ch episodic suff
Post by Ruth on Nov 15^th, 2004, 9:10pm

Welcome, and good luck with the O2 I hope you get it.
I tried it for the first time this episode and the imitrex shots, both worked well for me.
Wishing you the best.

Ruth

Title: Re: new to the site and am fellow Ch episodic suff
Post by marcelonyc on Nov 16^th, 2004, 1:42am

hi Roni & Ruth,

Thanks for the good wishes. I have tried the following meds: Immitrex spray as needed (w/ a supposed maximum of 2 p/day), Verapamil 90 mg 2-3x p/ day 4 yrs ago I took along w/ Belamine. I no longer take any narcotics so the last episode which was 2 yrs ago exactly in Nov I started on 240 mg of Verapamil 3x p/ day along with Neurontin 900 -1200 mg p/ day and eventually prednozone ( I think it was high dose of 60 mg daily for one month). The last episode was torturous.

I hate that I have no way of knowing what this cycle will be like. i made appointments with a new neuro this week and will keep the board posted.
How are you guys doing in your cycles??

Title: Re: new to the site and am fellow Ch episodic suff
Post by Bob_Johnson on Nov 16^th, 2004, 9:01am

One of the hardest parts of clusters is developing the patience and tolerance needed to work through the various meds & combinations used both to abort and prevent. It requires endurance on your part and a supportive doc who will see you on short notice to try something new when the present med isn't working.

Re. Lithium. Scared of what? It's an effective med as long as you do the required blood work and are aware of side effect symptoms. This is the kind of issue which knowledge will ease.

I'd strongly encourage you to get this book and use it a roadmap for discussions with your doc.
----
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

Title: Re: new to the site and am fellow Ch episodic suff
Post by E-Double on Nov 16^th, 2004, 9:06am

Another NYer excellent.....sort of.....

I'm sorry your hurting again but it seems you are in the right mindset. Good for you!!!

Patience and acceptance can go a long way in battling the extreme anxiety that comes with these things.

Get the proper meds for you since we all seem to respond slightly different because we are different.

Hang in there, stay positive and live to life to its fullest.

Best,

Eric