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        Cluster Headache Help and Support >> Getting to Know Ya >> Episodic or turning Chronic???
        
(Message started by: pierrejill on Mar 15^th, 2008, 9:35am)

Title: Episodic or turning Chronic???
Post by pierrejill on Mar 15^th, 2008, 9:35am

I have been dealing with episodic CH since I was about 16 years old. They would last about 30 days in the fall every 2-3 years.

My last cycle was 6 years ago...same hx fall, 30days. Towards the end of my cycle I was introduced to verapamil and it immediately broke the cycle. Prior to that year, I suffered through them until maxalt then when I became resistent to that I was introduced to imitrex. I can only use the pill because the injectable even at tiny amts (my wife, the vet, broke into the vial and provided me with little syringes to use!!) I would either get a rebound headache or relief from the spike for about 15 minutes before it returned.

So I was pleasantly happy when I went 6 years without an episode. Then on January 6th 2008 (now I am 36y old) I was hit with another bought. I immediately went to the doc and asked for verapamil...it didn't break the cycle this time. I arranged for a neurologist appt (3 weeks later!!) but ended up in the hospital prior to that, so I got to see the neurologist sooner.

After being on topomax- made me psychotic ( :o literally believed I had bugs under my skin like in the movie the mummy), depakote- got encephalopathy (my wife said I acted like I was mentally retarded) due to high ammonia retention, rectal suppositories of indocin, lithium, prednisone, dexamethasone, keppra, methergine, melatonin, occipital nerve blocks, and a nerve block by putting lidocaine q-tips 6 inches into my nose :-X... all in different combinations... I am now at day 70 with no relief in sight.

Please tell me that I am still epsodic!!! My wife is 8 1/2 months pregnant with our first child and I am suppose to be enjoying the happiest moment of my life!!

Also any recommendations for a cluster headache specialist in the New England/North East area?? My wife is trying to get me into the New England Center for Headaches in CT...anyone familiar with them???

Thanks!! Pierre

Title: Re: Episodic or turning Chronic???
Post by pierrejill on Mar 15^th, 2008, 9:37am

And I forgot to add...oxygen unfortunately doesn't work for me >:(! ...Pierre

Title: Re: Episodic or turning Chronic???
Post by brewcrew on Mar 15^th, 2008, 9:40am

The definition of chronic is going for a whole year without getting a break of 30 days or more.

Title: Re: Episodic or turning Chronic???
Post by pierrejill on Mar 15^th, 2008, 9:47am

I understand that chronic is to have a CH for a full year, and I am totally grateful that I am not there yet!!

I guess what I am curious to know is if this is how most peoples' experience has been when they turned from episodic to chronic. Since my normal length of an episodic event has over doubled and still going does that mean I am on the path to chronicity??? Or just having a bad episodic bought??

Thanks Pierre

Title: Re: Episodic or turning Chronic???
Post by Kevin_M on Mar 15^th, 2008, 9:56am

on 03/15/08 at 09:35:55, pierrejill wrote:

Towards the end of my cycle I was introduced to verapamil and it immediately broke the cycle.

Then on January 6th 2008 (now I am 36y old) I was hit with another bought. I immediately went to the doc and asked for verapamil...it didn't break the cycle this time.

My wife is trying to get me into the New England Center for Headaches in CT...anyone familiar with them???

Verapamil would not normally break a cycle. After a gradual period of increasing to the prescribed dosage, its preventive ability may show itself. If side effects are minimal, adjustments to the dosage could be made to see if it will be helpful. I'm not a doctor, but with consulting one, fluxuate its usage between 480 and 720, very gradually throughout a year.

The New England Center is a good place for clusters from what I've read here and otherwise.

Title: Re: Episodic or turning Chronic???
Post by Kevin_M on Mar 15^th, 2008, 10:03am

In your previous experience with oxygen, do you have any details. Read the oxygen link on the tab to the left for a good procedural administering and compare to the way that you used it. Effective equipment is more specialized than is usually provided.

Title: Re: Episodic or turning Chronic???
Post by Bob_Johnson on Mar 15^th, 2008, 11:04am

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Title: Re: Episodic or turning Chronic???
Post by kevmd on Mar 16^th, 2008, 3:47pm

In the same boat as you. Wife is 8 months pregnant with our 2nd and I know how much pressure you are feeling to end these things. I also wonder if I am going chronic as this is my longest episode. It really got going about Jan 6th, though my first hit came in late november. I am trying everything to get rid of these as you are. I wish you luck. Maybe we both can get rid of these before the big day!!!!

Title: Re: Episodic or turning Chronic???
Post by Guiseppi on Mar 17^th, 2008, 3:06pm

I went 28 years with clock like 3 month cycles 2X a year. Then out of the blue went thru an 8 month cycle. It ended so I am still officially episodic! ;)

Easy to say I know but try not to worry about going chronic, if it hapens, it happens, and we'll help you get thru it. Enjoy your pain free time, hoping your cycle is about done with you!

Guiseppi

Title: Re: Episodic or turning Chronic???
Post by BarbaraD on Mar 17^th, 2008, 4:54pm

You mentioned Imitrex, but not cafergot (ergotomine). It's the abort I use (as do several others here). It's an old drug but effective. Verap used in high doses has proved to be effective for others, but it takes time (ususally a pred taper is given to give it time to go to work). Like Kevin said - you have to find YOUR dose (and it doesn't happen overnight - patience!)

My neuro just put me on Namenda (a drug used mostly for Alzheimers) and said it's been doing good for CH also. I'm on day four so can't really say one way or the other right now. He said give it about 30 days.

Treating CH is trial and error. O2 has been the first line of defense for most of us. Used at 15 liters with a "non-rebreather" mask it seems to work for MOST of us. Used improperly forget it. But while it might not have worked in the past - it might be worth another try. But make sure you do it properly.

And don't worry about going chronic. Like Joe said - if it happens it happens - no need to spend a lot of time worrying about what might be. I've been chronic since 97 and probably worry less about it than most people. It's not the end of the world. You deal out lemonade when life gives you lemons. But keep your attitude in tact... that's rule number one in Granny's book of rules (and I have a BIG book of rules :D ).

Now get cheered up for that bouncy baby. We're having a convention in July in Dallas. Bring the little tyke to Dallas and we'll show you how this family can spoil a kid.

Hugs BD

Title: Re: Episodic or turning Chronic???
Post by wmsparky on Mar 17^th, 2008, 8:28pm

Hi I am new to this site and I have been suffering with cluster headaches for 26 yrs.I use Imigran nasal spray or Zomig 2.5-5 mg.Now as you may know you can't take the two together(your heart does not like this) Trust me.
It has been rough for me.The cycle has just started back after 1 and a half years. The longest that I haden't had any.
If anyone has ideas please let me know of any breakthroughs. Keep well and don't get down just look forward for your relief. William

Title: Re: Episodic or turning Chronic???
Post by vietvet2tours on Mar 17^th, 2008, 9:41pm

on 03/17/08 at 20:28:42, wmsparky wrote:

Breaking news william. Oxygen works.

Potter

Title: Re: Episodic or turning Chronic???
Post by Guiseppi on Mar 18^th, 2008, 10:17am

Hey Sparky, if you get a chance, post a new topic under getting to know you, more people will see it and you'll be inundated with great advice!

What the vet is trying to say is oxygen should absolutely be your first line abortive. Breathing pure oxygen, at a high flow rate, through a non re breather mask will abort a headache for me in 6-8 minutes. It has no side effects, is inexpensive, and incredibly effective.

Like i said, start a new topic in the getting to know you section so everyone gets a chance to throw you a hello. You are not alone anymore, we will do everything we can to help you fight the beast.

Guiseppi