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        New Message Board Archives >> Jan-Mar 2003 >> Hello from Mn.
        
(Message started by: tgz23 on Jan 6^th, 2003, 12:35am)

Title: Hello from Mn.
Post by tgz23 on Jan 6^th, 2003, 12:35am

Hello, my name is Tim and I live in Minnesota. I've been a CH sufferer since about 1981. I was on a four year cycle until 1993. I was in remission until August 2002. They are still going on strong, they always started in August and would end in October or November usually after it xnowed once or twice. On Thursday I totally lost it and broke down. I tried all the usual things I do for relief like an Imitrex injection a vicoprofin and a hot bath. Nothing even touched my CH just kept getting worse. I have 2-3 episodes a day. I ws doing pretty well, but all the drugs and time duration this time I think are changing me emotionally. Anyway I called my wife at work sobbing on the phone to help me get to the ER. I haven't cried in over 20 years. I got a hypo and it just took the edge off. This is pure hell. I'm sorry about the rand and this is probably very bad intro. I've been lurking for a while and thought why not join so I did. Hopefully this is one more thing that might help, being able to vent and talk to others who understand. Thanks Tim, Hope to hear from others.

Title: Re: Hello from Mn.
Post by Charlie on Jan 6^th, 2003, 12:49am

Welcome to our world. You are right, everyone here really understands. Stick around and let us know how things are going. There are some good ideas here. This is one that worked well for me:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: Hello from Mn.
Post by Mastifflvr28 on Jan 6^th, 2003, 12:56am

Welcome Tim,
I'm sorry to hear your having such a hard time right now. I'm sure you've wandered around the site a bit, etc. Have you tried O2 yet? Do you have a decent prevent? You might think about a trial of Pred, just so you can get some sleep.
Take care,
Mast

Title: Re: Hello from Mn.
Post by tgz23 on Jan 6^th, 2003, 1:00am

Thanks Charlie,
I'm just getting tired of it all. So many drugs, so much money and the people who think of me as a migraine suffer. They don't have a clue. I'm starting to worry because I'm changing mentally and emotionally. I know I should be strong, but this is getting harder every day. Where I live there is a 2 month waiting list to see a Neouololgist. I'll hang in there and I hope to meet many new people. Thanks for the support. Tim

Title: Re: Hello from Mn.
Post by Jarvis on Jan 6^th, 2003, 2:17am

Hi Tim. Headaches aside you gotta like this weather we are getting. 35 deg today. 45 by midweek. I can live with this...This site "is" good medication ....mj.

Title: Re: Hello from Mn.
Post by suzy617 on Jan 6^th, 2003, 6:48am

Hi Tim and welcome. Sorry your in pain right now but feel free anytime to vent to us. We have probably all done that at one time or another in here. Just knowing others understand your pain can help alot.
Wishing you pfdan's soon,
suzy

Title: Re: Hello from Mn.
Post by SommelierCH on Jan 6^th, 2003, 9:43am

Hello Tim, Welcome.

The three things proven to give us Clusterheads some relief, can all be, and have been, prescribed by primary care physicians. There is no need to wait two months, for a Neuro appointment, before you can find some help.

These three things are divided into two categories:

PREVENTIVE:
Verapamil (calcium channel blocker) Sustained Release (please correct me if I’m wrong, people), takes about a week to kick in when at the start of a cycle. In the middle of a cycle…..?… Documentation shows up to 900 mgs. a day (until the pain is gone). IT’S CHEAP.

ABORTIVE:
Triptans: You know about Imatrix, there are also, fast dissolving triptan tabs including: Maxalt MLT 10mg and Zomig ZMT 5mg. IT’S EXPENSIVE.

100% pure Oxygen: The most important part for a Clusterhead. 10 liters/min. through a non-rebreathing mask. IT’S CHEAP AND SAFE.

I have also found that taking any “pain” meds causes a delayed rebound attack.

You know your body better than anyone else, read all you can on this site, using the search. Also, check out the OUCH site (join up while you are there, it’s free) you just can’t get enough information about the Beast.

Good Luck,

David J.

Title: Re: Hello from Mn.
Post by echo on Jan 6^th, 2003, 10:15am

Welcome to the MB Tim.

Wish you didn't have to search us out. Glad you found us.

Always nice to communicate with another Minnesotian.
I'm an ex-west central dweller. "Home of Big Ole"

Title: Re: Hello from Mn.
Post by Belle on Jan 6^th, 2003, 10:41am

Hey Tim!

Again welcome. We all know the pain and mental anguish that you are going through. There are some really wonderful people here who know a lot and can make you laugh even in the worst of times. I know the waiting list game for a neuro even here in Canada. Check the buttons on the left and try everything you can to see what works best. I myself am on 125 mgs of amitritilyn a night and just finished taking Verapamil for the first time which seems to have calmed them down and made them less frequent but haven't got rid of them totally. Everyone is different but the best info can be found here and at the OUCH site. Take it all in and when you need some kind words to help through another one, when your wife's not home, you can always come here to find the support.

Take care,
Belle
::)

Title: Re: Hello from Mn.
Post by Roxy on Jan 6^th, 2003, 1:17pm

Howdy Tim, and welcome! :)

Really sorry you are having such a hard time right now. Just hang in there.....as my grandmother always said "This too shall pass".....even though you think it never will. We will help you all we can at this end. Just write, vent, and read...you'll be amazed at how it helps.

Hope you can get in soon to a neuro., I finally got an appointment....but, same as you, 2 mth. wait, and a 3 hr. drive to get there.

Take care,

R

Title: Re: Hello from Mn.
Post by cootie on Jan 6^th, 2003, 1:19pm

Hi Tim...sorry for your pain....when Brad's episode started back up recently we called our regular doctor and he prescribed the needed meds cuz there's a 3 month waiting list for the new nero in town. Brad was about out of imitrex so we couldn't wait for that and glad our family doctor is dedicaded enuff to be able to help us plus he reserached the CH's so he had some knowledge and glad he took the interest. Maybe you can check around with good family doctors willing to help dureing the wait....and print some info to take off here. Good luck to you ! Pam

Title: Re: Hello from Mn.
Post by Svenn on Jan 6^th, 2003, 1:22pm

I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons 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 /daily

This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway

Welcome to Clusterville and take care

Svenn

Title: Re: Hello from Mn.
Post by cecile on Jan 6^th, 2003, 1:39pm

hello tim,
i am more than sorry to hear that the devil came back in your world :-[

but you are in the right place in here :) I came back a few days ago after 2 years on my own because i was feeling grief-stricken (in fact i never felt that bad in all my life) ..... and after just a couple of days chatting and "foruming" in here I really feel better ! (THANK YOU ALL)

last : crying is very good somtime . before i was o "non-crying-girl" (i don't know how to say in english) but now i do not hesitate and i really think it's help.

lots of love and take care

cécile

Title: Re: Hello from Mn.
Post by Edna on Jan 6^th, 2003, 2:47pm

Hi Tim.......instead of my usual "sorry you had to find us....." I think for you I need to say:

Glad that you decided to join in and that we are here for you.......sounds like you really need us!!! So go ahead.....use us and all the wonderful info her as much as you need.

;D ;D ;D funny though, guess since you been lurking a while that you DO like us after all!!!!!!!!! KEWL that's pleasing to know ;) ;) ;) LOL

Hope pf moments are quickly in store for you, hoping to hear more from you

Welcome

EDNA

Title: Re: Hello from Mn.
Post by Silver_Dolphins on Jan 6^th, 2003, 4:50pm

Hi Tim and thank you for joining.

If I were you I would go ahead and get on the list to see a neuro. Then call EVERYDAY to see if a cancellation occured, then take that spot. That is what I did. Otherwise, I would still be waiting to see my neuro.

Until then, go to your local fire department or EMS station and introduce yourself as a cluster headache sufferer and see if they will provide with oxygen the next time you get hit by the Beast. My local FD members all know me and they are more than happy to help me any time of the day or night. This is faster and cheaper than a trip to the ER.

My neuro has me on Frovatritan and depakote and it seems to work fairly well. I still get the occasional visit by the Beast, but haven't had but one kip8 and a few kip6's since I started this treatment path. Of course I get constant shadows, but at least I can function.

PFDAN,

Silver Dolphins a/k/a Barry

Title: Re: Hello from Mn.
Post by domm on Jan 6^th, 2003, 4:51pm

Hey Tim - Welcome to the board and don't worry about the rant. We have all been there. What we really want you to know is that there is hope beyond the pain. Getting past it is the hard part. I have seen more courage displayed on this board, in the few months I've been hanging around, than you can fathom.
You will find answers here. May as well pull up a chair and start reading.
Hang tough
domm

Title: Re: Hello from Mn.
Post by 2late on Jan 6^th, 2003, 5:22pm

welcome to the board (what is it with dudes in Minnesota cryin' ;D) just kiddin' been there done that, tons of info & support here! .........2late