Clusterheadaches.com Message Board


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

        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> new member
        
(Message started by: RobP on Nov 14^th, 2004, 10:14pm)

Title: new member
Post by RobP on Nov 14^th, 2004, 10:14pm

I am new to the site and was very happy to find it. I have suffered from ch since 1998 but never got it diagnosed until last year. I thought I was absolutely crazy doing all the stupid things I do at night when the headaches wake me up. Now I see everybody with ch does the same things.
It really gets dangerous for me because I am a police officer and somethimes they hit when I'm at work. Hopefully I get that little feeling when its coming so I can get pulled over before my vision gets blurry. My doctor asked me if I had any guns which obviously I do and he proceeded to tell me that many people have killed themselves over these things.
Mine started up again 4 nights ago and I'm hoping they only run their normal month. I try to explain how they affect me to my wife but she doesn't quite understand, so its great having people to talk to now.
Rob

Title: Re: new member
Post by Charlie on Nov 14^th, 2004, 11:10pm

Welcome aboard and sorry you had reason to find us. Nevertheless, you'll find a lot of good information on ways to deal with this horror. It's a big site but everybody here knows exactly what you're talking about.

Here is a technique that I used:

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

Title: Re: new member
Post by unsolved1 on Nov 14^th, 2004, 11:47pm

Welcome to the message board Rob. Sorry for the reason that brought you here.

Although I am not a police officer, I collect and have many weapons. I've had clusters for over 16 years and haven't hurt myself yet !!

Clusters are called many different names. ie. cluster headaches, Histamine headaches, suicide headaches, erythroprosopalgia, Raeder's syndrome, spenopalatine neuralgia, ciliary neuralgia, vidian neuralgia, and histamine cephalalgia.

Read up. Knowledge is power.

You are Not alone

PF Wishes,
Unsolved

Title: Re: new member
Post by Ronny on Nov 15^th, 2004, 3:54pm

on 11/14/04 at 22:14:33, RobP wrote:

I try to explain how they affect me to my wife but she doesn't quite understand

Happens all the time!

Hi,

You can start with reading all the links on the left side of your screen.
Have you seen a doc/Neuro for this? There are medicins that can help. Oxygen for example is a life saver for many.

Ronny.

Title: Re: new member
Post by Margi on Nov 15^th, 2004, 3:59pm

on 11/15/04 at 15:54:14, Ronny wrote:

Happens all the time!
Ronny.

um, no - it doesn't happen ALL the time. There are supporters out here who do understand.

Please bring your wife here to the website, too, Rob and learn about this together. We have a Supporters Corner designed to help new supporters. She's in this with you so give her a chance to develop her own battle plan too, ok? We supporters need to know that we're not alone either.

Best of luck to you - what kinds of meds are you on and have you tried oxygen yet? Oxygen is a great abortive.

Title: Re: new member
Post by LeLimey on Nov 15^th, 2004, 4:11pm

Welcome Rob, nice to meet you!
I agree with Margi, get your wife to come along and have a look, there will be help for her to cope with your pain too.
I hope she never does REALLY understand what you are going through though, same as I hope the same for my poor hubby. Its enough knowing they don't like seeing us in pain eh?
Read as much as you can, print stuff off that will help friends and family understand and just come back and talk to us about how you are getting on.
Oh and its a pre-requisite that if you here any good jokes you HAVE to share them with us here!! ;)
The other Q's about docs and meds have already been asked so I'm not going there again,
I'll repeat the welcome though!
Helen

Title: Re: new member
Post by nani on Nov 15^th, 2004, 6:17pm

Welcome Rob and sorry you're here. It's true that some of us have wonderful supporters and some of us do not. Bring your wife here as Margi suggested. Hopefully she can get a picture of the real agony we endure. I know that I would not have been likely to believe my hubby if he'd been the stricken one...he can be a real baby about some things! [smiley=laugh.gif] All in all though- I'd rather be the sufferer than have to watch someone I love go through this... Read all you can here and on the OUCH site (to the left), the more info you have, the better the fight. Use your available sick time when you need to, you don't need to compromise your safety any more than it already can be. Hang in there... [smiley=hug.gif]

Title: Re: new member
Post by AussieBrian on Nov 15^th, 2004, 6:40pm

G'day Rob,

An ex-copper here, and you brought up the subject of CH and fire-arms.

Firstly, and most importantly, you're AWARE of it. Talk about it, talk to us about it, talk to your doc about it.
Don't just stick it in the back of your mind to fester.

I always made a point of never taking weapons home and always doing armed duty with another - not alone. But everyone's different.

Otherwise, mate, it's just chin up and let's get on with the job.

All the best and IM me anytime,

AussieBrian.

Title: Re: new member
Post by Bob_Johnson on Nov 15^th, 2004, 7:28pm

Rob, given your work situation it demands that you have Imitrex injection with you to give you the fastest relief possible when an attack appears. I hop you have discussed this with your doc.

A good preventive med is would also give you some protection from attacks while on duty.

Hope you have found a doc who has experience and skill in working with headache. If you have any doubts about the skills of your present doc, give us info on how you are being treated now.

Title: Re: new member
Post by RobP on Nov 15^th, 2004, 9:45pm

My doctor put me on Relpax but said once the headache starts O2 will probably be the best bet He also started me on Propranolol twice a day as a preventative
He also gave me some oxycodone to help at night I go to get a bottle of oxygen tomorrow They are getting me one from a medical company but its a small one that I can pretty much take anywhere
Thanks for all the replies

Title: Re: new member
Post by nani on Nov 15^th, 2004, 11:08pm

Sorry - the oxycodone won't work. :( Melatonin has a beter chance of helping you sleep.

Title: Re: new member
Post by RichardN on Nov 16^th, 2004, 12:32am

The small tank ("B" tank) is a little longer than a foot and can be carried in a knapsack or shoved under the seat of your cruiser - - works best for me when used at first sign of shadows. You'll want a couple of B tanks and an E tank (with a little cart - about 3 ft. tall) for the house and bedside - - real handy to just grab when one of the bastards wakes you up.

Do try the Melatonin. Have been using for about 40 days now and frequency and intensity reduced. Verapamil worked in past when I got to the right dosage, but am currently on several other medications and need some more information before I resume.

Read, read, read . . . these guys are great

PFDAN's Richard

Title: Re: new member
Post by Bob_Johnson on Nov 16^th, 2004, 10:31am

Rob, neither of the meds you mention are considered effective for Clusters. It raises the question about your doc's experience and knowledge. Can you give us some info about his background?

If you look under the meds button (left) you will get some info based on actual experience of folks here re. meds to use.

You may find it helpful to explore,

WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.

And look over: www.headachedrugs.com . Run by a good headache doc. He has two books which are quite good. They are a way to get organized material to guide you and, as importantly, to help you evaluate your doctor's approach to treating you.

Title: Re: new member
Post by Sisyphus on Nov 16^th, 2004, 9:01pm

Hi Rob, I'm new as well, just seen the site today. I've been doing the cluster since I was a kid at 14 and thank god I wasn't a cop! I might have used the gun! It's great to be talking to someone who understands, I've never met anyone before. I did a bit of cab driving back in the early eighties so I know what it's like to be driving when one hits you. hey at least you don't have passengers moaning about the weather as though it ruined their life whilst you're trying to drive! I live in London England, (set the time difference wrong on my profile) and am really fortunate to have a partner who is just the best. In the past my relationships have never stretched to understanding of cluster. My wife even took to having sex with a friend in the next room whilst I had a bout. Needless to say that marriage didn't last! Am in second week of a bout now and am just glad to have this site. My partner has never seen this before. I did try to tell her in advance but how can you really explain. God Bless her, she has just been an angel to me throughout it all and she is the first person I have known to have that sensitivity. I could rant away all day to you but I'll check out now by just saying good luck and keep knowing that it does end even when it seems like an eternity of pain. Regards, Jack.

Title: Re: new member
Post by thebbz on Nov 17^th, 2004, 8:24pm

Rob
Oh,just one or two!! [smiley=laugh.gif] Welcome to the site. I'm a gun nut. That gun won't kill you unless it's magical...need a trigger puller. You do need an abortive that works ASAP....Imitrex injection. Welcome and thanks for your service. Bookum Dano!!
BB

Title: Re: new member
Post by Spike266 on Nov 19^th, 2004, 5:48am

8)Hey Rob, Mike Here, I agree with Margi 100%. My wife found this website by accident and was amazed with the information that was here and all of the suffurers on board. I too am a COP. That Duty weapon is exactly that. You would only use it if your life was being threatened in the field, correct. Well CH's are not going to kill you. Get your wife on board so she is better able to understand what you go through when the monster shows up at your door. Be Good And For God's Sake Be Careful Out There!!!!!!! [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]

Title: Re: new member
Post by Svenn on Nov 19^th, 2004, 6:04am

Hi there

Glad you found us and welcome to Clusterville

I questioning your doc`s skill in this.Advice is to get a sec opinion

Taking the liberty to add my coctail of meds that did help me while i was epi

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for at least 15 minutes on a nonbreathermask or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg every 3dh day
Tapering down the verap im on full dozage 7 days after my last hit,then over the next 5 weeks im down to 1/daily.
after 1 week on Verap retard 120mgX1 and still no hits i can quit that to

Wish you the very best

The very best from Svenn

Title: Re: new member
Post by Ruth on Nov 20^th, 2004, 11:01am

Hi Rob,
Read the posts and good advice sent your way, I would agree with the imitrex injections and portable 02 to take with you and for at home. Tried both for the first time this year and they worked well for me.
Good luck and glad to meet you.

Ruth

Title: Re: new member
Post by TxBasslady on Nov 21^st, 2004, 12:50am

Hi Rob,

Welcome to the board.

Seldom it is that narcotic meds help with CH. For some, it causes rebound ha's.

For nightime hits...take Melatonin. You may have to play with the dosage, but it's cheap, and you can buy it OTC at any drugstore.

I take 6mg before bed. It has really been a lifesaver for me.

Read the previous threads on Melatonin. Alot of folks here take it.

Stick around....you'll meet lots of great folks here.

PF vibes,

Jean

Title: Re: new member
Post by RobP on Nov 30^th, 2004, 11:30pm

I had to go to E.R. last week and got a hefty shot of Demerol (sp?) It worked great after a 2 hour suffering. The E.R. doctor then gave me a script for 100mg Imitrex. Takes about 15-20 mins to start working and is the first thing I have ever used that works that fast. It is nice to know that I don't have to wait an hour or two anymore. Thanks for all the great advice everyone has sent.

Title: Re: new member
Post by thebbz on Nov 30^th, 2004, 11:49pm

Try the injectors...3 to 5 minites for me..Keep on truckin...Thanks for getting back. About the gun thing
......what do docs know anyway..LOL [smiley=laugh.gif] Hope it ends soon
BB

Title: Re: new member
Post by RobP on Dec 1^st, 2004, 12:09am

I have talked to other people about the gun comment and they seemed surprised he would ask me that. Oh well, like I told him, I'm not crazy, just in pain. Luckily, my wife really helps and does what she can for me.

Title: Re: new member
Post by RobP on Dec 1^st, 2004, 12:20am

Hey Mike, if you see this can you e-mail me. I would like to see what you are doing on duty when you get hit with one. I have to pull over and if I am stuck on a call, my patience level is about 0 with complainants.
Rob

Title: Re: new member
Post by don on Dec 1^st, 2004, 7:36am

Quote:

Takes about 15-20 mins

The imitrex injections will remove the pain in 3-5 minutes. Might be important in a profession where time can be critical.

Title: Re: new member
Post by BlueMeanie on Dec 2^nd, 2004, 6:53pm

Hi Rob,

Funny we just had a topic about getting pulled over during a CH attack. At least you'll know if someone is having a CH.

Like already mentioned, the injections are alot faster. Hope you get some PF time soon.

Welcome to Clusterville.