Clusterheadaches.com Message Board


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

        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Pain in Neck
        
(Message started by: nutty2chat2003 on Jul 17^th, 2004, 6:01am)

Title: Pain in Neck
Post by nutty2chat2003 on Jul 17^th, 2004, 6:01am

I'm back after over a year of being pain free. Twice I've been awakened by the beast in the last week. I just started college this summer and I work full time. The beast always knows when the worst possible time is for me. I am determined not to go back on meds. The last nuero I saw had me such a mess. The side effects from the meds (of course on top of the clusters) was about too much too bear. So, anyway, there is a point to my ramblings. I've noticed some things this time around and was wanting some feedback.

My headaches usually start with an odd and very painful stiffness in the left side of my neck. I'm usually hit while lying down or asleep until I'm in full cycle and then it is pretty much every other hour all day and night. I've never tried any kind of massage therapy (unless you count my husband and son's megar attempts). Surely others have tried this. This might be a sort of correlation to stress (which I've always felt was not really a factor, but ??) Anyone want to share their opinions on this.

(I apologize for the overshare, but if I remember correctly, my cluster brothers and sisters will understand), I'm constipated. I always thought it was the meds. I'm not on any and haven't been for about a year and half. Just though it a strange coincidence.

I'm thinking if I go full cycle, I'm going to go for O2. I looked into it last cycle and I couldn't afford it. My insurance wouldn't pay for it and I am usually struggling to make ends meet. I'm gonna check the oxygen info here and see if I can find info about welder's o2. I really don't want to dump more money down the drain to a nuero who will use me as a guinnea pig.

Well, I think I might be able to catch a couple of hours of sleep. I'm sure I'll be talking to you all again soon. Hey, by the way, what happened to the chat room?

Angela

Title: Re: Pain in Neck
Post by pubgirl on Jul 17^th, 2004, 1:26pm

Angela

I'm so sorry you are suffering so badly.
Could I be terribly nosey and ask a question?

If you don't abort an attack, how long does it last on average?

Wendy

Title: Re: Pain in Neck
Post by mynm156 on Jul 18^th, 2004, 11:43am

Hello,

Sorry to hear that you are having a tough time of it again. Glad to have you back though. O2 Seems to be alot of peoples drug of choice. I hope that it works for you. Superpain uses the non-medical O2 and might have some insight into getting it.

Good Luck

GOOD VIBES

MYNM156

Title: Re: Pain in Neck
Post by Biker on Jul 18^th, 2004, 1:38pm

I use oxygen from the welding shop. It works. I tried to get a perscription for the medical stuff, and was in the works of getting the red tape ironed out when I visited a business that fills the tanks. There I saw tanks from the welding industry, and the medical industry being filled from the same truck. When I asked the guys at the shop about the difference, they laughed and told me it was the same stuff. I got to thinking back on some of the hospitals I worked on, and I do not remember any filters in the lines. I looked in the basement of a local hospital, and saw industrial size oxygen tanks that were identical to the tanks one would find in a large fabrication shop. Then I looked in a home health care business, and saw those little bitty tanks with MEDICAL painted on them. So back to the business that fills the tanks, and there with the welding tanks, I see the little bitty MEDICAL tanks in line waiting to be filled. It was a decision on my part to lease a couple of welding tanks full of oxygen, one filled with accetyline for the garage cutting toarch, and purchase a small Q size tank of oxygen for the truck. The small Q size I had to pay for ownership. The C tank is bolted to the wall beside my bed. The D tank is chained beside my accetyline tank. Its all the same oxygen comming out the same truck. The lease on the bottles is a bit pricy, and a regulator cost a bit too. Yet compared with the medical prices, my prices were very low. My large tank cost $11.00 to have exchanged for a full one. With a bunch of adaptors, I was able to attach an air nozzle to the oxygen hose and come up oxygen on demand at whatever pressure I wish. Lots of oxygen at first, then taper down to just a fuzz. Im not suggesting you get oxygen from the welding supplier, but it sure works for me. Good luck.

Title: Re: Pain in Neck
Post by Ronny on Jul 18^th, 2004, 5:16pm

Hi, i'm sorry to hear your HA are back in business. I for myself have never used O² but after reading this board, i will certainly try it.

Ronny.

Title: Re: Pain in Neck
Post by don on Jul 18^th, 2004, 7:01pm

Quote:

I am determined not to go back on meds. The last nuero I saw had me such a mess.

What meds were you taking?

There are good effective meds for CH that may not give you the side effects you were experiancing. I'll go out on a limb here and guess your neuro was CH challenged and was prescribing the wrong meds ?

No point in suffering if there is a good med. protocol available to you.

Title: Re: Pain in Neck
Post by Kris_in_SJ on Jul 18^th, 2004, 8:53pm

Hi, and welcome,

Ditto to Don - What meds did they have you on? Many of us who are cyclical, have a "cocktail" that makes our cycles a little more tolerable. We're always interested in what works for others, as well as what doesn't.

Hugs,

Kris

Title: Re: Pain in Neckap
Post by nutty2chat2003 on Jul 19^th, 2004, 6:49am

Just because I don't take meds, don't think for a minute that I don't try to abort. I still pace or rock, which believe it or not, really does help stop the attack if I get up soon enough. I've been having shadows for a couple of months now, and use ice packs. The soft squishy ice packs applied to the base of my neck on the left side, the top of my head, and just behind my left ear. I used to put it on my left eye, but now the pain is getting worse and I can't handle it being there. So back to the question, at this point in time, an attack usually lasts about 1/2 hour. I know I'm not in full cycle because I'm only at about a kip 7 on my worst nights. But that's enough to wake me from my sleep. The dread of what's to come is hitting me really hard. I was up last night at 1 a.m. and 3:30 a.m. and now again at 5:30 a.m. As I said earlier, I'm in college and I work full time. I have homework to do this morning before work and I have class tonight after work. And I'm exhausted. When I signed up for college this summer, the beast hadn't hit in a long time. I don't think I would have chosen to go back to school if I'd known this was coming. But, what's done is done and I'm not going to give in to the beast. He's already robbed me of too much!

Title: Re: Pain in Neck
Post by don on Jul 19^th, 2004, 7:17am

I went through 6 years of college, working full time, and in and out of cycle.

Heres a little trick I learned. First inform your professors of the issue. Let them know you may need to leave the room for a period of time. I would sit near a door, preferably in the back of the room. If I got hit I would slip out to the rest room and use an imitrex injection and be back in the class in 10 minutes.

Title: Re: Pain in Neck
Post by nutty2chat2003 on Jul 19^th, 2004, 7:18am

Sorry, I missed the part asking about what meds? Let me see if I can remember. It's been a while. All meds taken at night before bed.

Verapamil 120 (of course) - 6
Elavil (I don't remember the mg of most of these) - 6
Indomethicin ?mg - 2
Lithium - don't remember the dose on that at all
2 back to back high dose prednisone tapers
Locals to the left side of my head
Lortab 10 upon occasion which were a waste
And it seems like there was one more, but I can't remember.

Now for the stuff to treat the side effects of the meds.
An antibiotic used to treat yeast infection for the thrush infection in my mouth (that was absolutely horrible)
Water pills for the swelling
Nexium for my stomach
And of course, for anyone who's ever been on Verapamil laxative.

This was what I was on at one time when the cycle stopped and I stopped the meds. I've tried the majority of the other normal stuff, including different psychiatric drugs and siezure meds, and of course Imetrex in shot and pill. The pills did nothing and the shots made me actually want to die more than the headaches already did, which I didn't think was possible. The last thing she suggested was a trip to see a specialist about Gamma Knife, which was way more than I could afford in a lifetime and we decided it would probably screw me up really bad and not even work. I'm still working on the 150 bucks the dr charged me to tell me this.

Just so you all know where I'm coming from, I 've had clusters since I was 15 that were treated as migraines until I was about 22 and I'm now 33. I was on Verapamil for nearly 10 years and I think it has lost it's effectivenes for me. I got a rest between 18 and 21 between my two kids and again this last year and half. I know typically clusters get worse with age, but it seems to me that they also get worse when I'm on meds. So I'm gonna try it without them until I can't take it anymore. I'm gonna check into the melatonin this week and if I get worse ("if" ha ha ha), I'll go to a nuero and try o2.

Title: Re: Pain in Neck
Post by don on Jul 19^th, 2004, 7:43am

A little ray of hope. Ch has been reported to dissipate in the later years. Kinda makes you want to reach 103 dont it?

Depends are much cheaper than imitrex. Fucking wonderful ! No headache but I keep shitting my pants.

Title: Re: Pain in Neck
Post by 911please on Jul 19^th, 2004, 7:09pm

My bout started June 21. Last bout was 1.5 years ago and I have been suffering since 1978.
After finding this site, and talking and reading I went to my gp and got on the O. Oxygen has been great for me. I pay $20 for a tank that is delivered that last about 4 days. That to me is a small price to pay for relief and I get relief within ten minutes usually. Maybe 10 bangers have been past the point of abort and I have had to ride them out.
Imitrex has been working as well, first time I get a knocking on the vien, I pop one and 75% success at aborting.
This bout, 1 month has cost $700 in meds, another 150 in O but any price is small if I get relief.

I have had about 5 k9's and scaling back from there. I am still getting a visit twice a day from the beast but I seem to have things in order where I can be shut down for as little time as possible.
If I were you, I'd get on the O ASAP.

re the neck; I seem to have terrible tension in my neck and jaw and find myself grinding my teeth when I sleep from the tension in my head, which of course wakes me up with another banger.

Doug....

Title: Re: Pain in Neck
Post by TBO2 on Jul 20^th, 2004, 3:48am

QUOTE <<A little ray of hope. Ch has been reported to dissipate in the later years. Kinda makes you want to reach 103 dont it?>> endQUOTE

On that note, my mother had cluster headaches as a young woman, though they were not diagnosed as such back then. They spontaneously disappeared after 11 years. Perhaps there is hope for you and I...

- Ted

Title: Re: Pain in Neck
Post by nutty2chat2003 on Jul 20^th, 2004, 7:22am

My last nuero told me that statistically they get worse with age. But I think I may have already mentioned I wasn't really fond of her. So I'll be happy to discount that information. ;;D

Title: Re: Pain in Neck
Post by IndianaJohn on Jul 20^th, 2004, 6:19pm

Hi, thought I'd throuw my two cents in on the neck pain issue. I hvave my HA's on the right side and when it happens I usually wind up tilting my head to the left, stretching out the neck muscles that are cramping up. Is it effective?, perhaps not but its something to do. I also get muscle cramps in my right side of my cheek so I try to knead and stretch them too. That provides some relief. I've also found that having a decent pillow helps with the neck pain.

As for massage therapy, my wife lightly rubs the right side of my head (where the pain is) and that helps me. Cold compresses only help me about 40% of the time. So if your husband is willing, maybe he can try massaging yours. The key for me is doing it lightly, not trying to get any knots out except on my neck.

Best wishes,

John

Title: Re: Pain in Neck
Post by Superpain on Jul 20^th, 2004, 7:10pm

on 07/18/04 at 13:38:31, Biker wrote:

Me too. I bought my tank and regulator though, and just use a 1/2" acrylic hose. I turn the valve on and off with each hit to conserve. I can kill about 20 headaches with an e tank.

$200 for a tank setup...
$18 for a refill...

Killing a headache???
PRICELESS!!!

Title: Re: Pain in Neck
Post by kimh on Jul 25^th, 2004, 10:19am

Hi Angela,

Everything you said in your first post was completely familiar to me. That pain in the neck - feels like Quasi Moto, no? :D

I've had clusters since i was a teenager (episodic) and i feel the same way you do regarding the meds. Every time i started with the meds the cycle was WORSE. It is my gut feeling that good abortive methods and a great deal of coping skills is the best defense. I realize many here disagree with me and that's fine.

Over the years the list of meds i have taken has become LONG....I don't think any of the preventatives i took prevented a single attack. So, for me PERSONALLY, finding an effective abortive is what i focus on - i've pretty much accepted that once begun, a cycle will run its course and inteference with meds will only complicate and/or worsen matters.

This reflects my personal opinion and i am NOT advising you on your own course of action.

Best luck and PFDAN***