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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Looking for Answers
        
(Message started by: Mental_Case on Mar 6^th, 2005, 9:37pm)

Title: Looking for Answers
Post by Mental_Case on Mar 6^th, 2005, 9:37pm

I am newly diagnosed with CH but have been dealing with this for a couple of years. They seem to be getting worse interrupting my work. I have been perscribed verapamil and Imitrex. Imitrex is a wonderful thing but it didn't take me long to figure out what a rebound headache was. What I am looking for is answers on neck pain. Am I alone in this or do others get severe pain at the top of their neck just before an attack and during?
Steve

Title: Re: Looking for Answers
Post by rcw134 on Mar 6^th, 2005, 9:42pm

try using an ice pack (frozen peas are best) or a bag of ice in the back of your neck and sides, then top. Don't do for over 15 min in any one place.

That has helped me thru some very painful CH.

Also are you on oxygen. Take it as your first line of defense.

The best thing is this community. Replys come from those who have been, or still are where you are.

Keep checking clusterville and you will find help.

Ray

Title: Re: Looking for Answers
Post by Mental_Case on Mar 6^th, 2005, 9:54pm

Haven't tryed oxygen yet. Doc mentioned it but didn't push it. He was quicker to prescribe the meds. I was taking 20mg Imitrex but after a couple of rebound headaches I started cutting the pill in half. Found that it made the pain go away just as fast. My definition of a rebound headache is a headache 24 hrs after taking the pill that has the same symptoms as a full attach but not near as extreme but it lasts for most of the day. Can anyone confirm what a rebound is to them?

Title: Re: Looking for Answers
Post by E-Double on Mar 6^th, 2005, 10:08pm

Read this ..Know it and make sure your doctor does too!!!
http://www.brightok.net/~mnjday/chtherapy.pdf

GET THE O2!!!

http://www.headachesupportgroups.com/oxygen/oxygen.htm

You might want to consider getting the injections...Atleast there is an easier way to regulate the amount you are taking and finding what for you is an effective dose to abort!

Good luck and keep up the good fight!!

Title: Re: Looking for Answers
Post by Langa on Mar 6^th, 2005, 10:15pm

on 03/06/05 at 21:54:25, Mental_Case wrote:

Hi MC and welcome!

Sounds to me like you're thinking you're getting rebound headaches (and you might be because I get them too with constant use of Imitrex), but what you described sounds more like what we call a shadow. It's that constant soreness and the same pain of a cluster, just very diminished that doesn't turn into an actual attack and can last for hours. My rebound headaches on imitrex come an hour or two after the actual use and every other hour or so after, that's when I know I have to detox for a few days. Stay off the imitrex and then use it again when needed. But I also have the oxygen to fall back on. Basically anything under a level 5 I abort with oxygen and anything above a level 6, I use the imitrex shot - and oxygen helps me a lot with the shadows.

I'm sure others can explain better. I'm only speaking for myself.

Regarding the sore neck, depends what works for you. Heat on the sore upper neck helps me.

By the way the imitrex injections work faster than the pill and I would seriously consider the oxygen. It's been a lifesaver for many of us. There's so much to read here...check out all the links to left including the oxygen link. Also check out the Kudzu thread under "medications". Another thing a lot of us use is Melatonin for the night-time hits.

Wishing you PFDAN's.

Langa

Title: Re: Looking for Answers
Post by jokrs2 on Mar 7^th, 2005, 12:57am

I also suffer from neck pain and stiffness but it's always there because of disc damage whether or not I'm having a CH attack. I have used warm water in my jacuzzi and/or ice at times and I went and got an hour massage on my neck, upper back & temples today. The massage was awesome. Your insurance might cover most of a few visits a year to a good masseuse. Hope you find a good situation for yourself. PFD's. Joe
ps. remember to breathe big........

Title: Re: Looking for Answers
Post by PCMCCK on Mar 7^th, 2005, 1:26am

[glow=red,2,300]Rebound headache, as has been explained to me by my doctors, is a more severe headache caused by overusage of a drug to stop a headache (usually a narcotic medication); the rebound headache is occurs when the medication is out of the body and is just as severe, if not more severe, than the original headache. To the best of my knowledge, this does not apply to cluster headaches. The test used by physicians, on me at any rate, to determine if my headaches were rebound, was to take me off of all pain killing medication for a period of 2 weeks (actually, one week would have been more than sufficient). Had my headache been a rebound one, it would have returned within a day or two, lasted for, perhaps a day or two and then gone away-unfortunately, the pain returned and remained for the entire 2 week period (I was very compliant, didn't even take aspirin). Clusters will return, no matter what you take and how effective it is, until they complete their cycle unless you are one of us unfortunate ones who have become chronic, in which case the best that you can hope for is a minimization of pain with various medications, some short remissions or the occassional long remission (I had a one year spontaneous remission after 5 years of daily pain, just woke up one day and the pain was gone; unfortuately, one day 3 years ago the pain just as suddenly returned and has been my constant companion since. Perhaps in another 2 years it will go into remission again for a year). Good luck, sorry that you've had to join this exclusive club, but then again, we only admit the best people![/glow

Title: Re: Looking for Answers
Post by Bob_Johnson on Mar 7^th, 2005, 9:50am

[Edited except for this one sentence.]

Curr Treat Options Neurol. 2003 Nov;5(6):455-466.

Cluster Headache and Cluster Variants.

Lenaerts ME.

Department of Neurology, Headache Section, University of Oklahoma Health Sciences Center, 1100 Lindsay Avenue, Oklahoma City, OK 73104, USA. marc-lenaerts@ouhsc.edu

There does not seem a significant tendency for analgesic rebound-withdrawal headache with cluster headache compared with migraine.

PMID: 14516523 [PubMed - as supplied by publisher]
==========

The neck pain was my experience for the first year I had clusters--then it shifted to a couple of other sites until finally settling down to one spot.

Another possibility: a kind of tension response to an attack.

Title: Re: Looking for Answers
Post by vig on Mar 7^th, 2005, 11:21am

semantics again...
There are "Rebound" headaches and there are the headaches that come following Imitrex use. They're not the same, but both are real.

Title: Re: Looking for Answers
Post by Bob_Johnson on Mar 7^th, 2005, 3:56pm

Why it's important to define our terms.
-----
Rebound headaches. "Rebound Headaches--A Review", Au. John S. Warner, M.D., in HEADACHE QUARTERLY, 10:3(1999). (There is some confusion on the board about the meaning of "rebound". There appears to be an emerging consensus in the medical literature to define "rebound" as a headache which is caused by the overuse of any medication used to abort a headache or relieve pain. "Recurrence" [of a headache] is being used to refer to the redevelopment of an attack when its "normal" duration is longer than the useful life of the medication which has been taken. That is, the medication effectiveness is reducing before the headache has come to an end; the pain redevelops.)

Title: Re: Looking for Answers
Post by PerryGR on Mar 7^th, 2005, 5:39pm

About the pain at the top of the neck:

Besides the ice-pack and hot water that most of us have used for that pain i've tried applying some topical anti-inflammatory cream on the area. The one i've used contains diclofenac sodium. Unfortunately my experience is that it stops working after a few weeks of daily use (which is not advisable in the first place).

This is just a suggection that you might want to discuss with your doctor.

PFDAN to all,
Perry.

Title: Re: Looking for Answers
Post by Kevin_M on Mar 7^th, 2005, 7:32pm

on 03/06/05 at 21:54:25, Mental_Case wrote:

I was taking 20mg Imitrex but after a couple of rebound headaches I started cutting the pill in half. Found that it made the pain go away just as fast.

Wasn't aware of a 20mg pill, which you are cutting in half. Have seen only the 50mg and 100mg myself. 20mg is the amount of sumatriptan in the nasal spray trex.

Quote:

My definition of a rebound headache is a headache 24 hrs after taking the pill that has the same symptoms as a full attach but not near as extreme but it lasts for most of the day. Can anyone confirm what a rebound is to them?

I'd agree with the definition Bob dug up. Overuse of med, lengthening the duration of an episode and possibly the frequency of attacks.

Kevin M

Title: Re: Looking for Answers
Post by Bob_Johnson on Mar 7^th, 2005, 8:30pm

Funct Neurol. 2000 Jul-Sep;15(3):167-70.

Sumatriptan overuse in episodic cluster headache: lack of adverse events, rebound syndromes, drug dependence and tachyphylaxis.

Centonze V, Bassi A, Causarano V, Dalfino L, Cassiano MA, Centonze A, Fabbri L, Albano O.

Dept of Internal Medicine and Public Medicine, University of Bari, Italy.

This observational study was designed to examine the pattern of sumatriptan use in patients with cluster headache using more than the recommended daily dose of subcutaneously injected (s.c.) sumatriptan. Thirteen patients suffering from episodic cluster headache were asked to record the characteristics of their attacks and drug intake for 1 year. All reported a high daily frequency of attacks (more than 3 per day) and the related overuse of s.c. sumatriptan. The results show that the overall incidence of adverse events among patients receiving sumatriptan injections for the treatment of cluster headache is low. The extended administration of this drug in episodic cluster headache did not result in tolerance problems or tachyphylaxis. Only 4 patients experienced minor adverse events and recovered more slowly than the others. They suffered from migraine without aura and cluster headache, and showed a family history of migraine. Even though they must be viewed with caution, due to the observational nature of the study and the low number of patients included, these results suggest that the profile of sumatriptan may differ in cluster headache compared with migraine.

PMID: 11062845 [PubMed - indexed for MEDLINE]

Title: Re: Looking for Answers
Post by Mr. Happy on Mar 7^th, 2005, 8:37pm

Y'all go argue the triptan rebound issue. Leave me out of it.

on 03/06/05 at 21:37:18, Mental_Case wrote:

do others get severe pain at the top of their neck just before an attack and during?

Yeah. I get that. One more little CH sideline treat. Rough spot on the affected side of the neck. Some folks, during an attack, have that spot turn into a ganglion knot, like a big charlie horse in their neck. Hurts too much to touch, let alone massage out. Wowsers. None for me, thanks....but yeah, I get that spot on the neck. I rub the heck out of it, but it doesn't do any good till the attack is over. Even after that.

It sucks, BTW.
RJ

Title: Re: Looking for Answers
Post by nani on Mar 7^th, 2005, 8:55pm

I don't get the "bump", but my neck muscle goes into a spasm and can turn my head from tightening up. I doesn't help to rub it until after an attack.

Title: Re: Looking for Answers
Post by Frank_W on Mar 8^th, 2005, 8:14am

When I am having a cluster headache, there's always this feeling that, if I could just pop my neck, the pain would magically vanish. Of course, no matter how I try, I can't seem to pop those muscles, and even when I am able to pop my neck, it doesn't do a thing for the pain of the cluster headache, but I never stop trying... Sheesh...

Taking a 20mg Imitrex pill? I don't think I've ever heard of oral Imitrex being useful for cluster headaches. The injectable Imitrex statdose pen usually delivers 6mg intramuscularly. Is the pill a higher dose because most of it is lost while being processed by the body?

[smiley=huh.gif] Scratching my head...

Title: Re: Looking for Answers
Post by Bob P on Mar 8^th, 2005, 2:47pm

Quote:

When I am having a cluster headache, there's always this feeling that, if I could just pop my neck, the pain would magically vanish.

This time I agree with Frank ;;D

Title: Re: Looking for Answers
Post by Gator on Mar 8^th, 2005, 3:47pm

I do end up tilting my head to the right quite a bit, but it's not as much a pain in the neck as I get a feeling like I need to pop my neck. Never can, though. I'm afraid one day I will succeed and end up with some kind of paralysis due to damaging my spinal chord.

Definitely go to echo the Oxygen and the injectible imitrex. Life savers both.

Title: Re: Looking for Answers
Post by Chillrmn1 on Mar 8^th, 2005, 8:54pm

Nope you're not alone. I get the pain in the neck AND the big knotted charlie horse like some of the rest. In fact, when I am being attacked, it usually starts in the neck first then swiftly proceeds to the side of the head and eye, and, etc.

Title: Re: Looking for Answers
Post by E-Double on Mar 8^th, 2005, 8:56pm

I'm told my "lump" is really large ;) [smiley=laugh.gif]

Seriously, it starts out like a pea then works its way up to a walnut that you can see.......Gnarly