Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2005 General Board Posts >> nwe to board
        
(Message started by: njones on Mar 10^th, 2005, 5:30am)

Title: nwe to board
Post by njones on Mar 10^th, 2005, 5:30am

I up everymorning at 3:23am, walking in cicles, holding my head, thinking about my kids to get me through. I feel like I must have done something really bad to someone else to have to suffer like this. It's worse than childbirth, broken limb, and migraines. I try taking BC Powders just as I feel the first hard pulse, on my nightstand, opened with an opened bottle of water just to save time and get the powder down before that 2 minute time of onset. Some times ot helps but 95% of the time it DOES NOT. Well of course it is 5:30am head ache is gone just numb on the left side of my head. Now I can get some slleep.

Title: Re: nwe to board
Post by nani on Mar 10^th, 2005, 8:47am

Welcome njones and sorry you're here. Tell us more about your headaches. Have you been diagnosed with cluster headaches? Besides the powders (which I haven't heard of) what meds have you tried? Look around this site and the OUCH site (link on the left) and gather as much info as possible. Info is our strongest weapon and gives us an opportunity to lead the way in our own treatment. We haven't done anything to deserve this...it's just one of those things. Hang in there. Pain free wishes, nani

Title: Re: nwe to board
Post by Kim Y. on Mar 10^th, 2005, 10:19am

Welcome and sorry, you are here. Have you done the cluster quiz. Even though you sound like yours is cluster. Have you gotten a Diagnosis. What is the powder???

Title: Re: nwe to board
Post by vig on Mar 10^th, 2005, 10:21am

the first thing is to realize you didn't do anything to deserve this. It's just a medical condition.

Title: Re: nwe to board
Post by Margi on Mar 10^th, 2005, 10:27am

njones, please make an appointment with a cluster knowledgeable neurologist. There is a list of them here: www.clusterheadaches.org in the first menu above the map.

BC Powders aren't going to help much (as you know) and there really are some treatments out there that can help you cope.

Read everything you can about cluster and please look into getting yourself some oxygen.

Prior to getting into a neuro, you could try taking dramamine or benadryl before bedtime. It just might help you get through the night without being awakened with the pain. Some folks have great success with melatonin for the purpose as well.

All the best - my heart aches for you.

Title: Re: nwe to board
Post by floridian on Mar 10^th, 2005, 10:28am

on 03/10/05 at 08:47:29, nani wrote:

Besides the powders (which I haven't heard of) what meds have you tried?

BC Powders are a southern thing - there are several varieties, most with aspirin, some with caffeine and other ingredients. They are marketed on the idea that a powder is faster than a tablet, but ultimately they are aspirin.

Title: Re: nwe to board
Post by fubar on Mar 10^th, 2005, 12:29pm

Nobody deserves this... we are not being punished.

In order to win this battle, you need to arm yourself with information and support. This site is a great resource for both. Welcome aboard.

Title: Re: nwe to board
Post by cootie on Mar 10^th, 2005, 4:27pm

When we were down south on vacation Brad picked up some of the 'powerders' packets cuz his mom and sister said he should try it.......I jus rolled my eyes and said.....YEAH RITE.......it is basically crushed apsrin. Would that stuff work faster for people that think there havein a heart attack tho I wonder ? You know how they say to take one if ya think that is happenin till ya get help ? Guess asprin has some sorta use other then eat yer stomach....it bothers mine. Take one asprin and call me two days later Pam

That stuff ain't NO MATCH fer ch..................

Title: Re: nwe to board
Post by maffumatt on Mar 10^th, 2005, 4:43pm

I am a firm believer of BCs and the best ones are the ones in the green box [arthritis strength]. They are very fast acting and on a normal headache they will knock it out way before excedrine or anything else, being in powner form they get digested ALOT faster than a pill. I buy a box or 2 on each of my trips home. Before i was diagnosed i woud eat them like candy. They kick ass on a tooth ache too.
Matt

Title: Re: new to board
Post by njones on Mar 11^th, 2005, 9:05pm

Thanks to the responders. Well I was first diagnosed at 19 years old, very funny storey I was sent to every specislist to diagnos my condition even Geriactrics. I am now 35 years old now. I do have a Neurologist but because of new insurences and changes in doctors getting in to see my neurologist has been a bunch of red tape. I have tried oxygen, and even paid for it out of pocket. Because I fit the typical migraine ( being female) my doctors I've seen think I'm crazy and self diagnosing. By the time I get the referral I'm at the end of my episodes, and the Neurologist wants me to call with my next episode. Before this my last episode was almost 1 1/2 ago. I did take the survey, I felt like I wrote the survey. And like I said the BC Powders only work 5% of the time, not much though. Thanks again all of you. I'll try to give more information as I find myself.

Title: Re: nwe to board
Post by stevegeebe on Mar 11^th, 2005, 9:09pm

o2.

Welcome.

Steve G

Title: Re: new to board
Post by njones on Mar 11^th, 2005, 9:20pm

Oh the meds I've tried, Imitrex, Relplex, Maxalt, other migraine meds, DHE 45,( makes you nauseated & vomit), Topamax, Depakote, Percocet, Tegretol, I even had doctors give me anti-depressants, and blood pressue meds eventhough my normal bp is 100/60.

Title: Re: nwe to board
Post by Renee on Mar 13^th, 2005, 8:47am

DHE 45 is a very good rescue med for many when nothing else has helped. Especially if given IV.

With that said, it really should be taken 15 minutes following phenergan, reglan or some other anti-nausea med as it will make you sick if not. Just make sure the two meds (dhe and phenergan especially) are not mixed in the same syringe.

For me, dhe works better than any triptan on the market. Most others find success with triptans.

good luck and welcome,
Renee

Title: Re: nwe to board
Post by Charlie on Mar 13^th, 2005, 2:17pm

Welcome aboard and sorry you've had to deal with this horror. Just tell you medics that these wake you out of a cold sleep. Migraines don't do that.

Here is a non-invasive thing that worked for me:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
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. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. 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. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

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.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head 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.

I hope this technique is helpful and I wish you the best of luck

Charlie