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Topic: Neck pain & Clustere Headaches. (Read 831 times) |
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Ming
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Neck pain & Clustere Headaches.
« on: Jul 10th, 2005, 8:18pm » |
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Hello,
I'm new to this site, and thanks in advance for any comments or suggestions.
Briefly here is my Cluster Headache history:
I've been having cluster headaches for 10 years now, only within the last two years has someone finally diagnosed them as cluster headaches. Before that my neuro's thought they were a migraine / cluster blend. I have had over six different neuro's, and more or less, they were all unhelpful until my current one (Diamond Headache Clinic in Chicago - amazing).
I have tried acupuncture, chiro, verapamil, depokte, topamax, imitrex, maxalt, prednisone, depro, frova, and more. My current routine is taking verapamil on onset of cluster, then going off of it after being headache free for two weeks.
I just recently aborted a cluster (for the first time ever) by doing the following: seeing my doctor immediately (he will schedule me the same day if needed), getting a shot of depro, and a ten day run of frova. This worked this time around.
However, this is my question. About three weeks later (starting last wed) I woke up and within 15 minutes had a typical cluster headache. Pain on temple, bugging out, watery eyes, shakey, the whole deal. Maybe a 5 on scale. I took a maxalt, and it was gone. Thinking it was a fluke I drank some beer that night and nothing. I ALWAYS get a headache the instant I drink when I'm in a cycle. I typically get a cycle only once a year. And when in a cycle I typically have headaches throught the day as well.
So since I just got off a cycle, alchohol has no effect, and the headaches are rather limited in pain level and frequency could this be a "false" cluster brought on by something else.... ie. my Neck which has been chronically sore and tense for the last week???
I've been over this before with doctors, and they seem to think it's unrlated. I've tried massage and wearing a mouthguard like thing to relieve BITING or GRINDING my teeth at night. Never seemed to make a difference. ANy suggestions or anyone have a similar experience?
Sorry this post is ridiculously long.
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lionsound
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Re: Neck pain & Clustere Headaches.
« Reply #1 on: Jul 10th, 2005, 9:49pm » |
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Welcome Ming!
Not unheard of to have a cluster get ya from out of nowhere.
have you tried Ice? sometimes works for low level CH...also works for a tense neck. IF it is the muscles you might want to ask your doc for an NSAID, but be careful of rebounds. Or a script for physical therapy mught be helpful.
Good idea to check wiht doc anyway..might be a different type of HA all together. If it's different for YOU get it checked out.
read read read...lots of good info and support here.
Be well and PF!
-lionsound
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sarsie
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Re: Neck pain & Clustere Headaches.
« Reply #2 on: Jul 10th, 2005, 11:40pm » |
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Hi. Do I know you from another site or is there someone else using your username?
I have neck pain at the base of my skull, more like brain stem pain during the latter portion of a cycle.
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Limey
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Re: Neck pain & Clustere Headaches.
« Reply #3 on: Jul 11th, 2005, 4:20am » |
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I get neck pain in the middle of a C/H but rarely pay much attention to it as I'm too busy dealing with the cute pain behind my eye and in my temple. I expect though that if a medication does get rid of the acute pain, then you will be left with the neck pain which will be more noticable when the eye and head pain isn't there.
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rubberplant
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Re: Neck pain & Clustere Headaches.
« Reply #4 on: Jul 11th, 2005, 11:20am » |
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Hi,
Been away for some time. My last cluster season was a year ago. Now out of the blue, I get hit sunday morning about 4am. Fortunately I had Imitrex for the first time and started to believe in a god! Wow! that stuff is unbelievable.
My neck since then has siezed up. This happened just before my last bout, and it stoppped moving altogether and then the clusters hit. Nothing I takes stops the neck pain.
Just becoming scared that the one-off on sunday may be the beginning of something else.
Any body else had singular attacks then nothing?
Best wishes to all,
James
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Ming
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Re: Neck pain & Clustere Headaches.
« Reply #5 on: Jul 11th, 2005, 11:59am » |
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I was hoping this might be a singular attack as well, but this morning I had a terrible one (rolling around, crying). Back to my doctor this afternoon. The neck pain has happened before, and normally goes away with the cycle - so maybe this time it appeared as warning symptom.
Ice sometimes does help for small headaches. Thanks for the suggestion. My father also had headaches and passed that tip on to me as well. I have yet to get oxygen, (it's outlandishly expensive and my insurance is terrible) but I sounds like it's worth it.
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Sandy_C
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Re: Neck pain & Clustere Headaches.
« Reply #6 on: Jul 11th, 2005, 12:20pm » |
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on Jul 10th, 2005, 8:18pm, Ming wrote:
So since I just got off a cycle, alchohol has no effect, and the headaches are rather limited in pain level and frequency could this be a "false" cluster brought on by something else.... ie. my Neck which has been chronically sore and tense for the last week???
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Sandy_C
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Re: Neck pain & Clustere Headaches.
« Reply #7 on: Jul 11th, 2005, 12:29pm » |
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on Jul 10th, 2005, 8:18pm, Ming wrote:Hello,
So since I just got off a cycle, alchohol has no effect, and the headaches are rather limited in pain level and frequency could this be a "false" cluster brought on by something else.... ie. my Neck which has been chronically sore and tense for the last week???
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Sorry about that above post - let's try this again!
Hi Ming and welcome to this awesome site. I finished an 8 week cycle at the end of April and had a totally pain free month of May. Then end of May, first of June, I started getting CH pain on the left side of my head (I have always been a rightie). And now that you mention it, I also notice that I have a sore/stiff neck feeling. The CH i'm now getting are few and far between (thank God), and I, too, can also drink alcohol, which is an absolute NO NO during cycle. IMHO, my "stiff" neck is being caused by 1 )being stressed out to think that I just finished a cycle and another is starting on the other side, or 2) being stressed at work/home/whatever. I do notice that when I get a CH now on the left, it's only during the week. Weekends, I am PF.
 How strange!
Anyway, welcome to this board. Keep reading - you will be amazed at how much these veterans can help you.
Sandy
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Lean on me when you're not strong
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I'll help you carry on
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StressFree
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Re: Neck pain & Clustere Headaches.
« Reply #8 on: Jul 11th, 2005, 12:58pm » |
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Hello Ming,
My cluster attacks have changed over the many years of suffering with them. I often have the stiff neck symptom, always severe on the side of the attack. The misdiagnosis you describe is very common. I was treated for TMJ by two different orthodontist/dentist and had all wisdom teeth pulled as part of initial treatment for chronic clusters. One thing from all of that though, I've found that a TENS (electrical stimulation) machine, similar to a TMJ treatment or what a Chiropracter sometimes uses, does help relieve the tension and may reduce severity of cluster attacks. Though like with everything else, the really bad ones still break through. My wife massaging temples, jaw, scalp, and neck sometimes abort an attack - again, not full proof. Also, I've been able to have a beer occasionally while at end of cycle (only shaddows remain) and not evoked a full cluster attack. Always risky and scary though! Best of luck to you, Rich
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bnfreeman
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Re: Neck pain & Clustere Headaches.
« Reply #9 on: Jul 11th, 2005, 10:42pm » |
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My neck gets "crunchy". I have seen others say the same thing in the past. And seems to get sore during an attack. I also grind my teeth at night. Something I have done since I was 2. Doc said it probably contributes to some headaches. I have multiple types of headaches.
BF
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Ming
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Update from my Doc visit.
« Reply #10 on: Jul 11th, 2005, 11:55pm » |
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Thanks again for sharing your comments. I'm new to (any) web board, so it's been a nice surpise. If you were curious what has happened since this morning my doctor gave me another depo shot, bloodwork, 180mg verapamil, and 5 days of AMERGE (i'm allergic to bellergal, my face gets swollen, etc...). He has a theory that this might be a "withdrawl" cycle having come off the verapamil so fast (i was on 120mg a day, then stopped right away. a week later a cycle set in).
He has also asked me to get oxygen, so hopefully I will get my insurance to cover it. Speaking of which, I am going to end this thread but will start a new one (or search for a new one) looking into ways of getting insured with CHs. I have been denied twice for Blue Cross since I have headaches and trips to the emergency room.
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