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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Introducing Myself
        
(Message started by: teakellie on Sep 12^th, 2006, 4:23am)

Title: Introducing Myself
Post by teakellie on Sep 12^th, 2006, 4:23am

Hi,
I have been lurking this evening, afraid to go to sleep, like many of you. I have been suffering from CH for about 20 years. An episode will last from 2-3 months, and I will usually have 3 pf years. (hallelujah!) I am now 41 and mom of a three year old boy. I'm finding this cluster to be particularly hard because I need to be present and fairly lucid for my child.

For me my modern day miracle was when Imitrex came on the market. I had never taken anything that actually worked on my headaches before! I am now exploring O2 to see if I can add that to my arsenal. This website is absolutely fabulous. I am learning so much and am having a much better outlook on life, despite the fact that it's 1:15 am.

Over the years I have found no dr. who truly understands. I am still seeking a good one. I have been mostly been treated as a migrane patient, but that never really worked. I just never fit into that description.

In my current episode, I'm getting up to 3 hits a night and 2-3 hits a day. I take Imitrex, but have been warned not to take it too often. (has anyone ever been told not to take it more than 2x a week?) I also do 800mg of ibuprofen and am amazed it works right now. Mostly I cry and pace around, and watch the moon move across the sky in our backyard.

I'm less than 3 weeks into this current cluster and I'm not sure if I can cope until the end. How do you deal day to day? How do you face yet another hit? How do you communicate with your family and friends without totally allienating everyone in the process? If you take Imitrex, how do you cope with only taking it sometimes when you know it will make you feel better? Arrgh!

I'm going to try to get a little shut eye before I'm up again.....

~Kellie in California

Title: Re: Introducing Myself
Post by BB on Sep 12^th, 2006, 6:18am

Hello Kellie

Its very important that you use preventive meds as well as abortive meds. The abortive meds such as Imitrex and oxygen are there for the break through attacks, but the preventive meds are supposed to stop the attacks from comming and/or reducing the intensity of the attacks.

There are many preventive meds and you may need to try a few to find the ones that work for you. Most commonly used are Prednisone, Verapamil , Lithium, Topamax, Vaproate and Deseril.

On the left side of the Board there is a lot of information on treatments. Print them out, take them to your doctor and ask to see a neurologist who is experienced in cluster.

I am in Australia so I dont know who to recommend you go to see but I am sure someone else will come to help you with that information.

Take heart that you are not alone. We are all here to support you whenever you need.

Painfree wishes to you. Take care.

Annette

Title: Re: Introducing Myself
Post by Bob_Johnson on Sep 12^th, 2006, 8:52am

This study will give you some comfort. However, for some folks, frequen use has been associated with changes in the frequency of attacks (increased). The actual % of this effect is low--but something to keep in mind.
------------
Headache. 2004 Feb;44(2):178-82.

Frequent triptan use: observations on safety issues.

Robbins L.

Department of Neurology, Rush Medical College, Chicago, Ill. 60062, USA.

OBJECTIVE: To examine the safety of frequent triptan use over extended periods. For a small group of patients with refractory migraine plus chronic daily headache, triptans are effective. METHODS: This retrospective study primarily evaluated the cardiac safety of daily triptan use in 118 patients and, in addition, hematologic tests were assessed. Each patient had utilized a triptan for a minimum of 4 days per week for at least 6 months. Patients with rebound headache had been withdrawn from the triptans. Most patients (97 of 118) averaged 1 tablet daily; most would occasionally go for several days without a triptan. Forty patients had taken a triptan for 6 months to 2 years, 37 patients from 2 to 4 years, and 41 for 4 or more years. RESULTS: Routine hematologic tests were performed periodically on all patients, and no abnormalities were attributable to triptans. Almost all patients had an electrocardiogram, and no abnormal electrocardiograms were felt to be related to triptans. Cardiac echocardiography was performed in 57 patients. The 10 abnormal echocardiograms were not due to triptans. All 20 cardiac stress tests revealed normal findings. Adverse events were minimal; 9 patients described fatigue due to triptans, and 5 had mild chest tightness. CONCLUSION: This long-term study of 118 patients indicates that frequent triptan use may be relatively safe.

PMID: 14756859

Title: Re: Introducing Myself
Post by Bob_Johnson on Sep 12^th, 2006, 8:53am

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/physicians/ 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: Introducing Myself
Post by wam on Sep 12^th, 2006, 11:43pm

Hi Kellie,
Hang in there were ALL in the same boat.There are times where the pain will be sooooo bad that I end up on the floor in a fetal position just crying in agony.My Clusters happen around 2am-always.I know what its like to be scared to go to bed.Im in the middle of a cycle right now and it sucks.I had one today that lasted 6 hours.I thought I was going to lose my mind.Pain started real slow and hit its peak in about 30 min.The Cluster would then stay at Kip 5 for the next 5 hours or so.Always on my right side/eye.Suffering since 17 years old.Im 33 now.God bless.

-William.

Title: Re: Introducing Myself
Post by georgej on Sep 13^th, 2006, 2:29am

Hi Kellie, and welcome to Clusterville.

You're in good hands already with Bob and Annette, so I won't add anything to what they've said about treatment.

I understand completely about your fear of sleep--more than ninety percent of my hits occur in the first REM cycle of the night.

I've been episodic for forty years. As to how to to deal with it, you've hit on the key already, I think--one day at a time, one hit at a time. As for communicating to friends and family without alienating them, I suppose in my case that my family has come to accept that the cycles are only a part of what I am, and only a piece of what makes me, myself. Most of my friends have never seen me get hit. They're aware of it, yes, and aware that I withdraw when I am in cycle, but I've been fortunate to have people around me who accept that and realize that I'm not intentionally neglecting them--only trying to cope with something fierce and terrible.

I have no doubt that you can cope with this present cycle. After all, you're not new to this--you've proven your mettle over twenty years, and nothing has changed. You are still the same person who fought her way to this point, and that person is not only a survivor, but a warrior. You can do it again.

We're all here for you. Feel free to vent, and to ask all the questions you'd like. Lean on us. The great thing about this place is that the people here truly do understand what you're dealing with.

Best wishes and sincere regards,

George

Title: Re: Introducing Myself
Post by BlueMeanie on Sep 13^th, 2006, 3:26am

Welcome to Clusterville Kellie. Glad you found us.

Your story sounds a lot like mine. The day Trex aborted my CH was the happiest day of my life. The Imitrex tip to the left of this page will help alot. You can split the doses in half and get the same relief. The limit should be 2 a day, not 2 a week. By splitting the shots, you should be able to handle up to 4 aborts a day. Unless your doctor is telling you not to take more for a health issue of course.

You definately want to give the 02 a try. That info is to the left of the page also. The right equpment is essential.

Being episodic, I choose not to take prevents, but someone will come along to help you if you have questions.

You know as well as I that it sure gets scary when you get to that 3rd week. You're doing just fine adn YOU WILL get through this just like before. With a little help from here, it'll make it even easier. Good luck to you and once again welcome.

BM

Title: Re: Introducing Myself
Post by teakellie on Sep 14^th, 2006, 9:40pm

Thank you everyone for the wonderful welcome! I feel like I am in very good company, and finally with other folks who can completely relate. I have actually had two days in a row with only minor pain. I'm doing oxygen a few times a night when a headache starts and it's helping so far. Wow. I'm not sure if this is the end of this particular episode, or if some of these new treatments are effective. I also bought some capsicum and red bulls, to try! I'm off to the treatment message board/medication as I want to see if anyone posted about using an amino acid cocktail.

I will use the resources to find a new dr. The one listed here on the site in my area is not listed in the phone book or online. But, I'm not giving up.

THANK YOU, THANK YOU for all your welcoming posts! 20 years without any help, understanding or support is simply 20 years too long. I feel like someone just tossed me a lifeboat after treading water and going under. Whew.

~Kellie

Title: Re: Introducing Myself
Post by Callico_Kid on Sep 16^th, 2006, 12:39am

Hi Kellie,

Glad you introduced yourself on here. You have already found some good advice and have made yourself part of the family. Take a lot of time to read, and print out materials that you can take with you to the Drs. Particularly look into the preventatives. Some have had good success with them, and others haven't. You have to find out what works for you.

Another option that some have used quite successfully are shrooms. That is a decision you will have to make for yourself, but I would strongly suggest you look into it. I personally haven't due to family involvement in law enforcement. I don't want to compromise their positions andethics, but I would suggest you look into it and make an informed decison.

Jerry