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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New to the site and my story
        
(Message started by: hzzz on Feb 28^th, 2005, 10:05pm)

Title: New to the site and my story
Post by hzzz on Feb 28^th, 2005, 10:05pm

I searched the internet yesterday with the start of a new round of headaches after a four year absence and found myself here. I was looking for any new info or miracle cures that had come about since my last bout.

Before I give my story, I have to say after reading a lot of stuff here the past 24 hours that many (if not most) of you suffer far worse than I. For that I am thankful. Knowing what this pain feels like, I cannot imagine having to deal with it as much as some of you do. Many of you are in my prayers after reading your stories.

I first experienced this lovely thing in the fall of1993 at the age of 28 (just turned 40 a few weeks ago). Having rarely gone to a doctor, I finally broke down and went after about a month. I got an MRI and a few worthless pills out of the deal before they went away two weeks later. I figured whatever caused it was gone forever.

In the fall of 1995, they came back. I knew they were back before I even had an actual attack. My head gets a numb, soft feeling in my right temple just above and behind my eye. They lasted another month and a half this time. Just enough time to be prescribed some more worthless pills.

I had following clusters in 1997, 1999, 2001 and starting now. Thankfully in 2001 I was finally prescribed Imitrex in pill form and it has worked great as long as I take it early in the attack. If I wake up with a headache, I am screwed for the full 30-40 minutes.

My headaches start with a slight pain on the right side of my head just above and behind my right eye. It slowly grows worse until I cannot stand the pain and would ask to be shot if not for the knowledge that it will end in 30 minutes or so. It is a sharp steady pain with some jabs of the ice pick mixed in.

The first few days of an episode my eye does not water much and my nose does not get real runny, but as they grow worse my eye waters, eyelid droops and my nose runs. The pain during the attacks gets more intense and then drops off toward the end of the cycle. My temple feels extremely numb right after the attack and stays that way for a couple of hours. It also has a strange feel throughout the whole cycle. My attacks have been at any time of day, but seem to happen at around the same times of day during the same cycle. Last time I had very few at night, but this time I have been having one every night.

Bad things during an attack: Noise, light, laying down, hot shower, movement

Things that seem to help: Squeezing my head with my hands, ice, quiet, darkness, deep breaths

I do not drink or smoke. I drink quite a bit of soda, but have not noticed a caffeine trigger. I have stopped taking caffeine at times and still had cycles start even while off all caffeine. My father has headaches, but nothing like this. No other family history. I did get punched in my right temple in the late 80's, but no other head trauma besides that. Considering it was 7 years before I started having CHs, I wouldn't think that would be the cause or a factor, but who knows.

I did run short of imitrex last cycle (first on imitrex), but the Dr. got me by with free samples. By the time I was getting in a real bind, they were over. Hopefully I will be that fortunate again. I will continue to check out the site and read more of your stories. Take care all.

Title: Re: New to the site and my story
Post by TxBasslady on Mar 1^st, 2005, 3:06am

Welcome to the board.

For the nightime hits, you might try Melatonin. It's actually a sleep aid....but somehow changes up our sleep pattern.

Many folks here have used it with great success. I take 6mg. about 30 min before bed, along with 3mg, Time Release Melatonin.

Check out the threads.....read all you can. Lots to read, but well worth the time.

PF vibes,

Jean

Title: Re: New to the site and my story
Post by Kevin_M on Mar 1^st, 2005, 8:50am

on 02/28/05 at 22:05:33, hzzz wrote:

in the fall of 1993...
...I got an MRI and a few worthless pills out of the deal before they went away two weeks later.

In the fall of 1995, they came back. They lasted another month and a half this time. Just enough time to be prescribed some more worthless pills.

I had following clusters in 1997, 1999, 2001 and starting now. Thankfully in 2001 I was finally prescribed Imitrex in pill form and it has worked great as long as I take it early in the attack. If I wake up with a headache, I am screwed for the full 30-40 minutes.

Last time I had very few at night, but this time I have been having one every night.

I did run short of imitrex last cycle (first on imitrex), but the Dr. got me by with free samples. By the time I was getting in a real bind, they were over

1993 and '95, worthless pills. 1997 and '99, no medication mentioned. 2001 imitrex pills but ran short.

The trex pills got you barely through last cycle before it ended but it sounds like the 40 minute mark has been felt with these and they are coming at night.

I'd look for a good headache doc, someone who has dealt in this area better than the doctor you've been seeing. It seems he is content to just let them run their course while helping you with minimal intervention or adequate prescribing. The trex pills are too late for night attacks and not so effective with most any attack.

The nasal spray is a faster acting trex, also their is an injectable kind, much faster. If you have already been prescribed trex and are ok with it and it seems effective, both the other kinds will be an improvement. The doctor you see should be aware of oxygen as an abortive for the headaches too. There are preventatives that can be taken to minimize the occurances, the doc should know about trying to find one for you and prescribe up to an effective dose.

Ask about a referrel to a neurologist, who may be more knowledgable, or a doctor with better cluster headache experience. There is a list of preferred doctors on this site for the state of Nebraska.

Keep looking, good luck to you hzzz.

Kevin M

Title: Re: New to the site and my story
Post by SLanegan on Mar 1^st, 2005, 5:57pm

First off hzzz sorry that you have found your way to our family of clusterheads!! But at the same time, glad that you have found us!!!!

Please keep reading everything that you can. Check out this link. It was sent to me from another CH suffer, E-Double. Print it out and take to a Neuro, sometimes, they don't have a clue on things, some do.

http://www.brightok.net/~mnjday/chtherapy.pdf

It gives awesome insight into current medications to help with CH.

I use the Trex injections (with the help of the trex tip at the right gets me more bang for the buck) and O2 for abortive meds, Depakote for preventative meds and just now tapering off with Prednisone as my transitional meds. Also Melatonin (which you can buy OTC) before I go to sleep at night.

My attacks have seem to come to nothing as of the last 9 days or so since the meds have started to kick in.

Please go see a Neuro with the attached document and get on some of the good meds. I know they have helped me tremendously deal with the beast over the last month.

Good luck to you and I hope you see you post more often.

PFDANs!!!

MasterSergeantSean

Title: Re: New to the site and my story
Post by E-Double on Mar 1^st, 2005, 6:14pm

DAMN Sge.... beat me to the punch!

Good looking out!

Ditto the above...and.....

Since you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be a savior.
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 5-6 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: New to the site and my story
Post by hzzz on Mar 1^st, 2005, 9:52pm

Thanks to each of you for the helpful advice. I know I need to go to a neuro, but I'm so busy and tied down at work during the day, I keep putting it off.

I'll post when I do and what works.

Title: Re: New to the site and my story
Post by hzzz on Mar 2^nd, 2005, 11:37am

Where is the link for Doctors by state? Found the one on OUCH. Is that the only one? Thanks in advance.

Title: Re: New to the site and my story
Post by crazy_mj on Mar 2^nd, 2005, 8:10pm

I am so sorry to hear that you suffer from clusters, but glad to hear that you found this website. Trust me when I say this, but having this place comes in so helpful, and can really take the edge off the insanity at times. You are in my thoughts, and I hope you have many p/f days ahead of you!!!

Title: Re: New to the site and my story
Post by Kevin_M on Mar 2^nd, 2005, 8:25pm

on 03/02/05 at 11:37:26, hzzz wrote:

Where is the link for Doctors by state? Found the one on OUCH. Is that the only one? Thanks in advance.

Yes hzzz, that is the only recommended doctors site. I noticed NE has only one listed in Lincoln.
I had been seeing my internal medicine doc for a long time but then a new headache institute opened up about 15 miles from me. It is an extension of a large hospital system in the SE Michigan area and I signed on right away. Try calling hospitals and see if they may have a headache clinic, extension for headaches, or if they have a doctor referral listing for headaches.
There was an article in "Headache", which is put out by ACHE (American Council for Headache Education) Summer 2004, Volume 15, Issue 2; "How to Find a Headache Doctor" It may be posted on there websight too. achenet.org/articles/gallagher.php

*a neuro's a good start too.

Good luck again.

Kevin M

Title: Re: New to the site and my story
Post by Kris_in_SJ on Mar 2^nd, 2005, 8:54pm

I've noticed that the "future-drugs" link is being used much more often now. Makes me want to do a "happy dance." That article literally saved my life last cycle. Thanks Keven and Eric for using it so much.

Read it,print it out and take it to your next appointment Hsst - it's some of the best doctor education available out there.

Welcome to the board, and PF wishes to you,

Kris

Title: Re: New to the site and my story
Post by hzzz on Mar 3^rd, 2005, 8:00pm

Saw the doctor today. Got my Melatonin all ready to go tonight and he prescribed Topamax. I'll let you all know how it works for me.

Title: Re: New to the site and my story
Post by hzzz on Mar 3^rd, 2005, 8:02pm

on 03/02/05 at 20:54:58, Kris_in_SJ wrote:

Took it to the doctor and he actually asked for a copy. I think he read up on clusters before I came in knowing that is what I had from my visit three years ago. Best informed any doctor has been since I've started seeing them 12 years ago for this stuff.

Title: Re: New to the site and my story
Post by debs on Mar 3^rd, 2005, 8:23pm

Welcome Hzzz,

Sorry that you have CH, but glad you found this site. It has helped me immensely. I read regularly, post less so. I think you will find there are a lot of people here who care, give support and know a whole hell of a lot about CH and treatments.

From what I have read, people tend to have a lot of side effects from Topamax, if that happens, you may want to consider trying verapamil. It is the 1st line preventative drug for CH. It has helped me considerably, no real attacks in a couple of weeks... although I know they are still there, the verap keeps them under control.

Also, O2 works well for many to abort HAs --it takes the edge off for me. Read the link on the left.... you'll get the info you need to give to your doc for a script. You'll probably hear more about that from some of the others here.

Good luck, and PF to you,
Debbie