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        New Message Board Archives >> 2003 Posts >> New waiting for treatment...HELP!
        
(Message started by: Tucker31 on Jun 16^th, 2003, 4:38pm)

Title: New waiting for treatment...HELP!
Post by Tucker31 on Jun 16^th, 2003, 4:38pm

Hi i haven't been to see the head doc. yet waiting for 7/2 to roll around in the mean time I suffer. Had this problem last Spring/all Summer ended up in the ER Ct scan whole bit. Went normal in the Fall. Thought it was a change in Meds. It has come back within a week of last year and the same. Sunday was peak I hope! Had eyes checked normal, tons of blood drawn normal, taking Ultracet and trying the water treatment seems to help. Can anyone give any advice for doc. visit or making to the 2nd of July? Our family doc. seems to take it more seriously this year since it is back, but has no clue! Also no head banging but are muscle tremors normal with onset? How does one not panic knowing what's coming when you feel the on set? I feel lucky that the sleep thing is only mild right now but am fearful it will get worse! Thanks for the info. I look forward to hearing from you all soon. :)

Title: Re: New waiting for treatment...HELP!
Post by Kasey4 on Jun 16^th, 2003, 6:55pm

Hi Tucker, I'm pretty new here, too (or actually I come and go but whatever... ) I'm sure the others will have better advice than I but I just wanted to say sorry that you're here - these things are worse than horrible.

Personally, the only abortive I have ever found that works consistently is Imitrex injections. No preventative has ever worked.

Until you see the doctor, you might want to try ice. It doesn't take away the pain but it makes it lessen slightly for me. I fill up a ziplock half way with water and put it in my freezer to grab as soon as one hits. I can either work through it or I get to the point of no return and do an injection.

Title: Re: New waiting for treatment...HELP!
Post by Charlie on Jun 16^th, 2003, 7:33pm

Welcome to the madhouse. If this is CH, you'll find a lot of stuff to copy on the left of of the homepage. Do some printing and drag it to your doctor. You need to see a neurologist too. You also shouldn't have to wait that long but I know some do.

One thing: One cannot lie down during a CH attack or sleep through one. It will wake you out of a sound sleep.

Stick around and let us know how you're doing. Here's something that I used with very good results:

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: New waiting for treatment...HELP!
Post by Live4Fun on Jun 16^th, 2003, 8:45pm

My only advice is to keep a very very detailed journal of every headache, length, where you were, where it hurt, what you took, did it help, etc etc. Every thing you can think of. The journal will help your doc/Neuro determine exactly what you have as well as treatments. For your sake, I really hope you do not have CH. But if you do, welcome aboard the crazy train. Keep us posted. :-)

Bryan

Title: Re: New waiting for treatment...HELP!
Post by cootie on Jun 16^th, 2003, 8:51pm

Hello Tucker31....you got alot of rowin ta do so get bizzy and read all the info you can on here and print stuff out fer yer doc. Good luck to ya......Pam row master ;)

Title: Re: New waiting for treatment...HELP!
Post by BlackDog on Jun 16^th, 2003, 10:35pm

Hi Tucker31, I am new here too. Keep reading EVERYTHING and educate yourself. I think what Bryan said is excellent advice.
Welcome,
Darren
Hoping you're PF soon.

Title: Re: New waiting for treatment...HELP!
Post by paul_b on Jun 16^th, 2003, 10:49pm

One does NOT wait until 7/2. You park yourself in the office when it first opens armed with the info from this site and a written log of your attacks described in detail. If not attended to in a reasonable amount of time you start pacing and screaming "I can feel one coming on" over and over again. Once they have you in a room ask for O2 ( it really does work when taken correctly and you catch the attack early.)

Title: Re: New waiting for treatment...HELP!
Post by Tucker31 on Jun 17^th, 2003, 8:53am

Hey everyone thanks for the info. The reading I have done lots of it I have read everything on this site and do plan on taking it to the nuero. on 7/2. Started a journal on Saturday, thanks. As for 7/2 well I have thought of going to the doctor's office and letting them know that just won't work. The Nuero is 80 miles away do I call and say that this just isn't going to work? I think my reg. doc. just thinks I ma losing it. If we didn't live in a small town I would switch docs. but there is no one to switch to, and they know that! I will try the redirect blood trick, and see if I can get it to work. After a peak attack should I be free some during the day until another major attack? Or will it just be somewhat better but still need meds? With meds. yesterday I felt almost normal at times. You see I battled a problem most of the day yesterday and found myself wide awake last night with a headache. The waking during the night is getting worse not better.But I haven't had a attack to the point of ER trip since Sunday. But then I have been taking meds. too! If this is Cluster headaches I can't seem to break the cycle. Water helps but hasn't made it go wawy and stay away! Can't leave home because I have to go to the bathroom every 20 mins.! It's a comfort to know that other people out there are there to support. Thanks in a way it helps keep my frustration level down some! :)

Title: Re: New waiting for treatment...HELP!
Post by Mark C on Jun 17^th, 2003, 6:55pm

Welcome Tucker.....
Sorry about the head, I know how you feel :-/ I will attach a couple of favorite links, I hope they help.
http://www.clusterheadaches.org/resources/non_script_treat.htm

Here is a good HA diary if you don't already have one....
http://www.headaches.org/professional/educationresources/PDF/headache_diary.pdf

Hang in there,
Mark

Title: Re: New waiting for treatment...HELP!
Post by stevegeebe on Jun 17^th, 2003, 7:44pm

Why these "Healers" wont just take a moment out their day to see you as soon as possible, like tomorrow, simply blows me away. Wonder why they chose medicine as a vocation.?

Press them harder and keep it up.

Sorry Tucker.

Steve G

Title: Re: New waiting for treatment...HELP!
Post by Tucker31 on Jun 17^th, 2003, 9:06pm

Mark thanks for the links. I went to the NFH dairy link because I have basically been just making notes of my day, meds. eating, daily activites, Sleep pattern or lack of one etc. Anyway the dairy pulls up on page 2 and tells you consists of tracking the following info. But the rest of the page is a grid with no indication of what info. So pelase tell me what it should say?
Charles, tried the redirect blood trick with reg. morning attack worked some. It's harder to do as I get tired during the day. Felt some better during the day, but the nightly attack is on it's way I can feel it coming, best go. Thanks for all your help! :)

Title: Re: New waiting for treatment...HELP!
Post by katethecelt on Jun 17^th, 2003, 10:43pm

Welcome aboard Tucker - sure wish you didn't have to be here.

Don't worry about your reg doc thinking you're losing it. Just make an appt, or show up, with your info, and ask for meds. Imitrex injections work best for me. I'm taking Verapamil as a preventative and it's helping to slow down this cycle. Many people have had good luck with taking Prednisone to help stop a cycle. Check the Meds message board for suggestions on dosages.

Very strong coffee sometimes helps if I catch it fast enough. I use ice on my head too.

Sending you Pain Free Vibes, Kate

Title: Re: New waiting for treatment...HELP!
Post by MarkHW on Jun 18^th, 2003, 9:48am

Welcome - sorry you have to be here!

That's the worst part... so many of the medical professionals just don't understand what we go through. I had one tell me I should see a psychiatrist because these headaches just aren't normal and must be psychosematic. I dumped him quick.... found a neuro that understands cluster.

Imitrex is the only thing that aborts mine (O2 will sometimes). Prednasone (steroidal anti-inflamatory will often kick it for awhile also).

Good luck!
Mark

Title: Re: New waiting for treatment...HELP!
Post by Tucker31 on Jun 18^th, 2003, 12:00pm

Called the Nuero this morning asked for a sooner appointment. No luck they were nice about it but the doc. is going on vacation for 21/2 weeks in July and 7/2 was the soonest and lucky to get appointment. Only got it because my reg. doc. worked me in. The Nuero did put me on a cancelation list so now I can wait for the phone to ring and maybe go. It depends on if I can get my hubbie out of work on short notice. His boss is very understanding but like most jobs he has some days he just has to be there to take care of things. Thankfully my husband is VERY supportive and given the choice of me or work will pick family every time! Thank goodness for my daugther and me. With a log for the last few days I see the attack pattern and have gotten the morning attack sort of under control. It is the worst attack of the day by far. The afternoon is mild, the night I guess I get tired and hope it will just go away I don't seem to be as on my toes about catching it coming. Maybe tonight will be different. The middle of the night is enough to wake me but not as bad as the morning. Frustration level is going up because I can't seem to get my life to normal. My doc. doesn't seem to understand how disruptive this is to our lives. I just wish he could be me for a day maybe he would do something more. I am about ready to demand a imitrex shot and see if it will break the cycle. It couldn't hurt could it? The O2 I don't know enough about. I guess I need to explore this more. Right now I just want the cycle broken! Thanks for the support from all of you. I had no idea that so many people suffered from this health problem.

Title: Re: New waiting for treatment...HELP!
Post by BlackDog on Jun 18^th, 2003, 12:09pm

Quote:

Frustration level is going up because I can't seem to get my life to normal. My doc. doesn't seem to understand how disruptive this is to our lives.

I understand. Hang tough...you'll get through this.
Hoping you're PF soon. Darren :)

Title: Re: New waiting for treatment...HELP!
Post by paul_b on Jun 18^th, 2003, 12:19pm

Breaking the cycle is often a trial and error thing because we all do not respond to meds exactly the same but Imitrex and O2 have been effective for most of us when an attack comes on. We are with you. Life does get altered when we are in our cycles. If it isn't the pain, it's the anxiety. I always carry Imitrex with me and I have the O2 ready and accesible at home. Not much more we can do besides avoid alcohol and keep a log. Drinking too much water can be toxic, be careful.

Title: Re: New waiting for treatment...HELP!
Post by suzy617 on Jun 18^th, 2003, 12:21pm

I have nothing more to add except to say hello and welcome to our world.
I hope you find pfdans soon.

Suzy