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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
        
(Message started by: Linda_Howell on Aug 3^rd, 2007, 11:21pm)

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by Linda_Howell on Aug 3^rd, 2007, 11:21pm

Dave and I are talking on pm right now but anyone else who wants to add anything, please do.. :-X

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by Linda_Howell on Aug 3^rd, 2007, 11:52pm

Dave is getting advice to have a nerve block from a dentist he went to because he was having these HA's after having a tooth pulled.

Anyone have a good Neuro in Ohio they can recommend? What he says doesn't sound like CH to me but it makes me angry that they want to do a nerve block because of the pain without checking any further.

I'll let Dave add any additional info he wants because I am at a loss to help him at this time.

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by Racer1_NC on Aug 4^th, 2007, 12:11am

From the list of sufferer recommended Doctors at the OUCH Website................

Ohio

Francis O'Donnell
Columbus

Luis Pagani
Cincinnati

Robert S. Kunkel
Cleveland

Dr. John Kelly

Southeastern Center for Headache and Pain
Greater Cincinnati Area

Donita Rechnitzer
Westlake

Carl Anseven
Boardman

Mark Stillman

Cleveland

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by nani on Aug 4^th, 2007, 12:22am

Welcome, Dave. Can you tell us more about your headaches?
How long do they last, where does it hurt, etc?

Hopefully, we can help you find some answers.

pain free wishes, nani

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by nani on Aug 4^th, 2007, 12:45am

There are a number of headaches that have similar symptoms. Over in the left, there is a link to the cluster quiz. Take the test and see what it says.
Also, none of us can diagnose you, but a neurologist can. Start keeping a diary of the headaches. Include time of day, duration of the headaches, exactly where it hurts and the intensity of the pain. On the left is also a link to the kip scale, which we use to rank the intensity. Most docs use a 1 - 10 scale, with 10 being the worst pain you've ever had in your life. This will help the neuro make an accurate diagnosis.
Hopefully, you can see a dr quickly and get the help you need. Look around this site and take notes on treatments and coping skills.
Please feel free to ask any questions, OK?
pain free wishes, nani

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by rolo65 on Aug 4^th, 2007, 12:47am

Get the O2 as fast as you can, and order a cluster mask if the O2 vender doesn't have the non re-breather with accumulator bag setup available.

It will be the fastest relief you can get till you can see a neurologist.

Hugs for the pain,

Roland.

Edited cause I forgot how to spell my name [smiley=huh.gif]

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by thebbz on Aug 4^th, 2007, 1:01am

hang in there Dave your not alone. Cold rags on the eyes. fight on fight on ....If you do have CH it will not kill you. Cuss bang whooooo. dont forget to breathe.
Are ya still hangin ????
Have you taken the imitrex? Get some coffee in ya. Lots.
come back if ya can
thebb

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by Linda_Howell on Aug 4^th, 2007, 1:02am

With Daves permission:

Quote:

last oct. i had a legmaent bad tooth surgacally removed.two months later i started getting a thing i called zingers on the left side of my head. lasting 2 to 5 minutes.they would start at the extraction area. not every day, but at around the same time.

--------------------------------------------------------------------------------

Quote:

i went to the doctor about it, he said it is probley nerve damage go back to the dentist. went to the dentist, he than refered me back to the oral surgen. the original surgen retired so went to a different one. he wanted to give me a nerve block. well they were only 5 minute zingers so i passed in the nerve block. i

Quote:

--------------------------------------------------------------------------------
as time went on they became longer, no by the way i have a appt with a nuroligest next week. i have not been diaongist offically yet.

Quote:

ok more intense. after a couple of more monthe it was every night they would last 15min to it seemed like hours mabye 2 to 3. i started self meds. all the wrong meds. my doctor basically thought i was a hyprocondreac or a drugie. i was asking for narcatics.

Quote:

the headachs are so bad. i feels like a knife or pick is being shoved and twisted straight into my head. my feels like my left nostral is pouring blood, but it is snot. i want to shove my eyeball deep into my head. i cant lay down. i sit and rock, or i pace back and forth. i drink 4 beers in minutes. take valume, zanax and perkisets. this had been going on for about two weeks.

Quote:

i went for the block, (also i had a ct scan that showed normal.) i was feeling ok, this was yesterday at 2. by 9 it hit again hard real hard one of the worst ever... again i self medicated. my girfriend called at 10:30 to check on me and it was starting to subside. she was real concerened that i had another one we thought it was over. what a let down she made me tell her all of my symtoms and she wroth them down. told me to go to the docs with the list.

My heart goes out to you Dave, and I've put this out here because I know that sometimes I don't have all the answers. ;;D and it helps when I can ask my friends here for their opinions too. You are among friends here, so ask away... Linda

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by nani on Aug 4^th, 2007, 1:03am

If you have clusters, the Imitrex pill works too slowly to give you any relief. When you see the neuro, talk about Imitrex injections or other fast acting triptans.
If you are getting hit at night, many if us find the over the counter supplement melatonin helpful. Between 3 - 9 mgs before bed.

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by nani on Aug 4^th, 2007, 1:07am

OK, I just saw your posts. Clusters can be triggered by both alcohol and narcotics. The narcotics won't help them either, even if they don't trigger an attack. You may want to lay off the beer and meds until you know what's going on.
Try a RedBull for a daytime attack, it's loaded with caffeine, so I don't suggest you use it at night.

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by thebbz on Aug 4^th, 2007, 1:08am

This may sound crazy Dave,,but get off the narcotics. If it is CH it may be triggering. If its the nerve..well then it will hurt. Sound like it hurts pretty bad in any case. Use your own judgement. You have the symtoms of CH. I dont get horners either. (droopy eyelid). farrgin demon anyhow.
thebb

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by nani on Aug 4^th, 2007, 1:12am

I'm sorry, guys. I've been ill and need to go to bed.

I'm sure those who will be up will continue to answer questions, Dave. Keep us posted, OK?

Carry on....

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by thebbz on Aug 4^th, 2007, 1:14am

Everybody gets sketchy about relaxing and sleeping when being hit. Try to breathe deeply and not get to invovled. Your system gets all worked up and it makes it worse. Your tough and you will get through.
Were like Freddy Kruger kids.....How many mg. are the imitrex? How long has it been since the ice pick left?
still with ya
thebb

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by rolo65 on Aug 4^th, 2007, 1:14am

Quote: i drink 4 beers in minutes. take valume, zanax and perkisets. this had been going on for about two weeks.

Leave that dam beer alone, It's probably making it twice as bad. Replace it with Red Bull!

Rolo..

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by thebbz on Aug 4^th, 2007, 1:16am

Quote:

--------------------------------------------------------------------------------
i know the meds and beer is the wrong thing now, i did not know that yestreday. i guess i was trying to just get so messed up i would pass out and sleep all night. it worked mabye half the time. the other times i was up in a couple of hours in agony doing it all over.

Been there done that. Dont do that anymore...lol ;;D
thebb

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by rolo65 on Aug 4^th, 2007, 1:26am

The Mary Jane will help you sleep. As for the Imitrex, you have to get the injectable form for it to work fast.

Don't forget, you are not alone in this fight. We are all with you!

Rolo..

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by thebbz on Aug 4^th, 2007, 1:29am

Bullshit stay away from the pot ..its a big trigger just like the beer.
thebb
try it you'll find out. Another suggestion would be...if it has been 24 hours since you have done the last imitrex, and you need sleep, take the imitrex for a prevent and try to get some sleep once it has had some time to kick in.
How long since you slept?

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by rolo65 on Aug 4^th, 2007, 1:31am

on 08/04/07 at 01:29:09, thebbz wrote:

Bullshit stay away from the pot ..its a big trigger just like the beer.
thebb
try it you'll find out.

Maybe for you, not for me!

I'm not recomending it ether. :)

Rolo..

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by rolo65 on Aug 4^th, 2007, 1:40am

on 08/04/07 at 01:33:04, DWAL wrote:

shit this is scaring the hell out of me. i dont even want to breathe because it might start one going. can i chew the imitrex?

Deep controled breathing can be very helpful, the more O2 you can get in the better!

Chew the Imitrex? Probably tastes like crap, I wouldn't want to find out. I don't know, I always get it in shot form and do it with a insulin needle.

I think the docs wrong, it takes 20-30 min in pill form before it kicks in. I would take it the second you start feeling the attack starting since most attacks are 15-45 min in duration. If you wait till it's hell the attack will probably be over before it starts to take effect.

Rolo..

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by thebbz on Aug 4^th, 2007, 1:42am

You can but they taste like hell ;) if your not getting hit there is no reason to.
Where are you at as far as your sleep cycle? Do you have to work tomorrow?
Try to relax your going to be fine even if it comes back.
thebb

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by thebbz on Aug 4^th, 2007, 1:46am

If it were me I would take the imitrex and try to get some sleep. You are wore down and in the, "one step ahead of the demon game." Do you have insurance? Is anybody with you?
thebb

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by thebbz on Aug 4^th, 2007, 1:48am

Have you noticed that everytime you get relaxed and comfortable the pain comes back? Right? Wrong?

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by thebbz on Aug 4^th, 2007, 1:58am

This is going to sound like a sick joke but....fatigue is a trigger. You have to sleep eventually so you know the imitrex will abort a CH. Pills do not have an immediate effect on the attack at onset,,,,but they do prevent one from coming for at least 8 hours, especially the 100mg pills. The trick is to take the pill, let it go to work for an hour or so and get some sleep. Then start the battle all over. In the daytime use mass amounts of caffeine and never relax. Get to the doc asap and get some 02.
Heres some information for you to print out and take with you.
http://www.plainboard.com/ch/chtherapy.pdf

http://www.chhelp.org/mhni.html

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by rolo65 on Aug 4^th, 2007, 2:01am

Sleep can be a scary thing, but you can't function without it so give in and try. Many people out here swear by the red bull, I have tried it and it has helped some. Get some and try it. It can’t hurt anyway.

Rolo..

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by thebbz on Aug 4^th, 2007, 2:19am

Just hang in there and get some rest.
talk at you later
thebb

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by MJ on Aug 4^th, 2007, 2:28am

Welcome home DWAL

Your not alone.

Good advice given above. The things we all initially thought would help, generally increase the pain, even advil and tylenol. Untill you see a doc a clear head to stay focused is maybe best. Theres allways oxygen breathing it in at 100% helps a lot of folks.

By now you have found that an attack allways goes away. It will return but it goes away.
I gather they last up to an hour and a 1/2. Muster the strength to accept it if you can and like the rest of us its another battle to win.
Pacing and being upright is critical for most of us when hit hard. Push-ups at the start of an attack can help me greatly. we are all a little different in what helps. Cold ice packs on the nerve, rinsing mouth and gums with ice cold water can help. Others like heat.

Like thebbz says it wont kill ya. It certainly feels like it though. I agree on the sleep just do it if you can. Your gonna get hit wether you sleep or not.

I have heard that chewing an imitrex pill can speed its delivery. The trex does nothing for me but helps an awfull lot of people here.

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by thebbz on Aug 4^th, 2007, 10:27am

Good to hear you got some rest. ;;D Now all you need is a proper and correct diagnosis ,followed with a treatment plan. This is treatable. And you dont have to go through quite so much pain.
Now kick some demon ass.
thebb

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by nani on Aug 4^th, 2007, 10:59am

:) I'm glad you got some rest, Dave. Keep reading...
pf wishes, nani

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by Ray on Aug 4^th, 2007, 12:05pm

Hello Dave:

I have e-mailed you my phone number. I am LOCAL in Columbus. Sorry you've had to come here for help, but welcome to clusterville.

Ray

Call Me!

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by luveemom on Aug 4^th, 2007, 1:23pm

Hey Dave,
I got your PM last night...I sent ya one back but I didn't hear from ya and I had to get some zzz's. I hope you are hangin in there. I am new here too and I am in the middle of a rotten cycle myself. If there is anything I can do to help ya out let me know. Sorry your havin such a bad time of it. Sending you PF wishes.

alicia

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by Ray on Aug 4^th, 2007, 1:49pm

Dave and I had a chat. It's nice to be local!

Ray

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by luveemom on Aug 4^th, 2007, 1:57pm

Hey Ray,
Thanks, I knew someone on here would take care of him. I just wanted to make sure he didn't think I blew him off last night. I was concerned when I didn't hear back from his PM. That's great that you are local! What's better than that? PF I guess..

alicia

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by thebbz on Aug 4^th, 2007, 9:20pm

Local...somebody to borrow 02 from. Ray will get ya squared away.
thebb

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by Ray on Aug 6^th, 2007, 1:45am

Dave,

That sounds great! It looks like I'll be out of town from 8/8- 8/15. Call anytime.

With regards,

Ray

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by nani on Aug 6^th, 2007, 2:25pm

The oxygen in that link is only 90% Dave. We need 100%

You see the neuro tomorrow, right? Be sure to take your headache diary, and talk to him about oxygen and Imitrex shots. I can't advise you on the Imitrex you have now, because I can't use it at all.
pf wishes, nani

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by zapparulz on Aug 9^th, 2007, 8:31pm

on 08/07/07 at 12:41:08, DWAL wrote:

I was getting a headache at 7 last night and i knew it was going to be bad because it was escalating fast. took the imitrex for the first time ever and it was gone in 15 minutes. I still got twinges in my head, felt flush, sick to my stomich (not real bad), dizzy, tired, kind of shakey. The side affects were better than the pain. I took it again today.

hey dave-

hope your doing ok-

be careful not to overload on the immitex-

you can get bad rebound headaches after too much of it-

peace

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by rolo65 on Aug 9^th, 2007, 8:34pm

on 08/09/07 at 20:31:31, zapparulz wrote:

hey dave-

hope your doing ok-

be careful not to overload on the immitex-

you can get bad rebound headaches after too much of it-

peace

Very good advice! 8)

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by nani on Aug 10^th, 2007, 12:34am

Dave, have you looked into melatonin yet?
It's over the counter, relatively cheap and helps a lot of us avoid night time attacks.

Title: Re: HI, I AM NEW HERE AND I THINK I HAVE THIS HELL
Post by RichardN on Aug 16^th, 2007, 3:09am

Hi Dave . . . and Welcome Home

I haven't posted in quite a while (have been mostly PF this summer), but had to check in and "dip an oar".

I first came here 2/02, after a year of mis-diagnosis, non-working meds, "normal" tests, CTs, etc., like many here. When my wife found this site, I was having 6-8 hits per day, sometimes 3-5 at night, Kip 5-9 . . . most 20-45 min and some 1 1/2 - 2 hrs. These guys gave me a "name-for-the-pain" and the info to battle the beast.

I am thrilled you got to a neuro today and hope that an 02 script was among those you carried away. I can't take Imitrex (arterie blockage), so 02 is my only abortive. . . . can usually kill the beast in minutes if used early-on in the attack. You will need a non-rebreather mask to start with, and as soon as you can . . . order a Clustermasx . . . well worth the $ . . . more effective and I can use it at a lower setting on my regulator.

Please do not discount the "water X 3" therapy. Five years ago, it was Verapamil that finally gave me a pain-free day (about three weeks after coming here), and I used it up until about 2 1/2 years ago when I had to stop because of uncomfortably low blood pressure readings and other medical issues . . . . which required me to drink large ammounts of water . . . attacks started to drop in frequency/intensity . . . . and I ALWAYS have 02 at hand to abort.

I also used Melatonin to good effect . . . . you just have to get used to the grogginess when a night hit breaks through and it takes a minute to realize what woke you and then reach for the 02.

DO NOT USE THE STRAP ON THE MASK AT NIGHT! When you get used to it and if it works for you (as it does for most of us), it's very easy to lay back down when you feel him leaving and fall asleep with the mask in place and you'll wake strangling for air when the tank runs out . . . uncomfortable AND a waste of 02.

Beer and alchohol was and still is a major trigger for me . . . a real beer or shot of brandy will trigger an attack even during the PF times.

You're off to a great start, and you've stepped into a great family of folks who truly know your pain. One of my favorite motto's here is, "Nothing works for everyone, but SOMETHING works for everyone" . . . and here you have a very good chance of finding the "something" that works for you.

Be Safe, PFDANS

Richard

Title: Re: HI, I AM NEW HERE AND NEW TO THIS HELL
Post by Ray on Aug 17^th, 2007, 3:19am

Hello Dave:

I was out of town for a week, but you can feel free to call me more often, as now I am back. I used the Stadol Nasal Spray before, and cannot recommend it based upon my experiences with it. If that's highly addictive, it wasn't for me. It made me a super grouch and did NOT lessen my pain.

The Decadron taper should lessen the number of hits and allow you a break and allow the other meds to have a chance to work.

Read the Imitrex tip to the left and please give the oxygen a thorough checkout as it helps so many of us.

I've heard that melatonin and sleeping meds may augment each other, so you might be pretty groggy. Most of them are addictive, so be careful with them too!

Best of luck for PF days and nights!

Ray

Title: Re: HI, I AM NEW HERE AND NEW TO THIS HELL
Post by southwalessunshine on Aug 17^th, 2007, 6:59pm

Ask if you can get 02. It has no side effects and aborts quickly. If it works for you then you won't have to wprry about the injections etc. I have recently been given 02 but keep the imi pills and injections for emergencies. You seem to be having some luck with the Red Bull. I didn't until i started washing it down with caffeine tablets and it works a treat on my mild shadows. However when i get an all out beast, the injections are the only port of call. I too am weirded out by them and no matter how bad the pain is, I can't bring myself to jab myself. Luckily I have a partner who has overcome the weirdness of it and does it for me. Keep on reading here, honestly you learn new stuff all the time. i've only been visiting this site for a little while and it's a great source of info and the understanding and support from fellow CH sufferers is invaluable x