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        Cluster Headache Help and Support >> Getting to Know Ya >> new here
        
(Message started by: marley on Mar 31^st, 2008, 10:40pm)

Title: new here
Post by marley on Mar 31^st, 2008, 10:40pm

Hey all, new to the forum not to the headaches though. I found this site a while ago but never signed up on the forum. I finally signed up for various reasons. I thought id go ahead and introduce myself though.

Im 22 years old and ive been having these headaches for about 7 years. They started out as a quick 30second intense headache that was mainly in my jaw. From there they progressed into the feeling of having someone taking a super heated piece of rebar, jamming it into my eye, then tapping on the end of it with a 32oz ball peen hammer. Those last a lovely 1-4 hours.

Been through the doctor run around. First started with imitrex which did nothing, then to maxalt, which does nothing, and another i cant remember, which did nothing. Then he tried giving me lortabs, which did nothing. I told him he didnt get it, the pain needed to stop immediatly, so he gave me a heavier dose of lortabs. Which were equally as worthless. My mother read a long time ago about the o2 thing and he said it was a pointless attempt. If i get the 02 in at the right time it works sometimes.

Then again theres the headaches that are relentless and dont respond to anything. I remember the worst one i had i literally thought i was gonna die. That was such a crappy feeling because i couldnt stop thinking about how sad my mom and dad was gonna be to see me dead in my room. I was literally started to hallucinate from the pain and i was seeing a beach scene thing, it was really strange. I woke up later in the hallway in the fetal position feeling like i ran 10 miles and lost a fight with Fedor Emelianko.

Along with this i have the joys of simple partial seizures. I dont drop to the floor and have a seizure, but when the epilepsy is acting up i am practically retarded. I cant make food or do anything really. Ill drop anything or knock something over till my brain kinda chills out. Which generally takes 24 hrs of being idle. Which means sitting around trying to be positive.

I came to this sight cause i desperately needed to get that off my chest, people here will understand the physical pain and understand im not complaining, just venting. And as well, i really really hope i can help someone out.

I chose my s/n cause bob marleys music comforts me. He just gets a bad rep from all the stoners. He was actually a good guy.

Title: Re: new here
Post by Linda_Howell on Mar 31^st, 2008, 10:52pm

Bob Marley rocks ...Mon;)

You have never been anywhere where people will understand your pain than right here my friend.

Welcome and I am so glad you decided to introduce yourself. I'm Linda. Glad to meet you.!

Those 30 second pains you describe are not usually associated with cluster headaches. Imitrex and Maxalt doing nothing for the pain is strange also.

Please tell us more about what you're going through. None of us are doctors but we do have knowledge here.

I am going to send a PM to Charlie on your behalf. He suffers from seizures as well as having CH..he may be able to help you in ways we cannot.

Hang in there, o.k. We'll try to help in any way we can.

Linda

Title: Re: new here
Post by marley on Mar 31^st, 2008, 11:07pm

Those 30 second ones were years ago. I understand those werent clusters, but i imagine it was related in some way. After those went away it was immediately followed by the clusters. Sounds strange i know. I had those headaches in 2001 i think. I didnt go to the doctor for those as they were bearable.

So far the only thing that treats the clusters was the oxygen. Now i have an oxygen tank the size of an oxyacetlyn tank. That thing has saved me countless times.

Ive been looking into meditation stuff to deal with the intense headaches. This idea was inspired by Thich Quang Duc the buddhist guy that burned himself in protest to the vietnam war. He was doused in gasoline and burned alive. While this was going on he never cried out in pain or even moved a muscle. Heres a quote i got off a websight describing this, "As he burned he never moved a muscle, never uttered a sound, his outward composure in sharp contrast to the wailing people around him."

Title: Re: new here
Post by mezza on Apr 1^st, 2008, 4:44am

It sounds like you are really suffering- sorry for that-

What form of imitrex are you taking? Have you seen a neurologist lately?

Read as much as you can on this site regarding medications and ch in general and then arm yourself with this information and carry it to your doctor to discuss treatment options-
:)

Title: Re: new here
Post by Bob_Johnson on Apr 1^st, 2008, 9:28am

It's not unusual for CH folks to plow thru several docs before they find one who understands the complexity of headache and can help manage it. If you are not satisfied with your doc's experience (and too many neurologists don't have what it takes!)--here are some ideas:

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: new here
Post by Guiseppi on Apr 1^st, 2008, 10:08am

Welcome to the board, Bob's given you a stack of good reading so I'll just say howdy! And glad to see you have the oxygen, 30 years of dancing with the beast it's still my number one abortive!

Guiseppi

Title: Re: new here
Post by darknight on Apr 1^st, 2008, 11:56am

Hey Marley maan!!

glad you have somewhere you can find understanding and empathy.

Bob, linda and Guiseppi are the experts to make us all feel welcome and have probably advised thousands so heed their advice and it has helped alot.

Joining this site helped me gain control of the beast using Oxygen!!!

Take care and PFD to all!!! ;)

Title: Re: new here
Post by DennisM1045 on Apr 1^st, 2008, 12:31pm

Welcome home Marley! I'm glad to see you found your way to the front door.

I hear what you are saying and I understand your pain. You won't find another place where this many people can say that.

I also agree with Linda's observation on Imitrex. Were you using the pill (which would make sense because it takes so long to kick in) or an injection (which wouldn't).

-Dennis-

Title: Re: new here
Post by coach_bill on Apr 1^st, 2008, 8:20pm

hey there, we all know where your coming from, i think all of us at some point have been beaten to floor by the beast. and remember some times you have to shake up the line-up a little to see what really works. feel better.. coach bill

Title: Re: new here
Post by Charlie on Apr 2^nd, 2008, 10:07am

Hi Marley:

I'm so sorry that I didn't notice Linda's email about you sooner. I know exactly how you feel. I began having epileptic attacks when I was 13 in 1959. Back then they were called petit mal seizures and today my infant neurologist calls them complex partials. I have a friend who came up with a term I love since I take anti-seizure drugs: "Aborted Grand Mals." To me, that's perfect. To add to the mix, in 1969, when I was 23, I had my first cluster while watching tv. I was convinced that it was over and that I was now going to die from some kind of tumor or other form of cancer. How lucky can we be?

The thing is that I was seeing a neurologist several times a year for my seizures and made an appointment a few days later and he correctly diagnosed it as clusters. He said it was a classic case and that little could be done. In 1969, not much was available and he told me that they would likely go away and if I were lucky, never come back...but not necessarily. They began in October, lasted about 3-4 weeks and returned in late March for another few weeks. Like so many, I could depend on them to show up regularly in fall and spring. I had them in August only once for about a week in the 1970s but only once. In 1991, when I was 45, they began to fade and since then, I've had nothing resembling a cluster attack. There is some good evidence that age is a factor in this. I've not been hit in 17 years. I came to this madhouse because when I got my computer, I had to see just how rare clusters were. Sadly, I discovered that a ton of us had this horror and that there were some with chronic clusters. I came here because after reading the guestbook I was a puddle of tears and just had to. I found a group of lunatics that I can't get away from. They are a decent lot, even the PITAs 8)

My epileptics attacks are pretty stubborn and responded very little to drugs. In the old days all there was was Dilantin and Phenolbarbitol. It shortened them and made the seizures a bit less dramatic and of course made me less dramatic as well. When they began, I had them almost every day and they lasted a few minutes and turned me into an idiot but I got back to the real world in a few as well. They tried a lot of strange combinations with no result until I was put on Topamax. It stopped my seizures cold. For the first time since I was 13, I had no seizures..NONE until I found that this drug had the lovely side-effect of making me what I can only call paranoid. I was afraid of everything, forgetful and generally a mess. I had to quit taking the drug and I got back my sanity. Now that is a horror; having a drug that killed my seizures but made me so nuts that I couldn't handle it. Now, all I take is Lamictal and I don't think it does much good. I now have about 20 seizures a month and about three a year that knock me out. They are fewer but different. I do strange things sometimes: I'll spill stuff of course, sometimes walk around a grocery store, not knowing which one, and become a kleptomaniac now and then. There are some really odd ones: I start to rearrange the stock in drugstores, walk several blocks before I realize that I had no reason to do so, miss lots of appointments, mow a strip or two of my neighbor's lawn along with mine, and the weidest: hide things in my house. It took me week to find where I hid a pair of shoes, once. When I get them at the keyboard...after I realize that everything is Greek, I get up, go to my recliner, grab a paper and read it.....when I get my brain back and not realize that I had a seizure for 1/2 hour or so. This happens more than I realize no doubt. One of the shittiest ones is my thowing away things. I carry stuff in a canvass bag when walking. A couple weeks ago, somewhere along my route, I tossed out my water bottle and a throwaway camera that I often carry....I know better than to carry a digital. I have to wonder what else I've done over the years. Friends tap me on the shoulder and sometimes that knocks me back to reality. I've never driven of course.

Whew. This doesn't belong on this board, I guess but I get carried away. I'll post my cluster techique in another post:

Charlie

Title: Re: new here
Post by Charlie on Apr 2^nd, 2008, 10:09am

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

This thing really worked for me, Marley. Give it a shot.

Charlie