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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Is This a Cluster?
        
(Message started by: LindaT on Jan 17^th, 2005, 1:05pm)

Title: Is This a Cluster?
Post by LindaT on Jan 17^th, 2005, 1:05pm

Hi, I'm new here. Last February, I had a month from hell...really.....I was fine, came back to work from lunch and almost passed out from the pain of a the worst headache I ever had. ( I don't often get headaches). It was mostly by my left temple, my left eye, and all along my left jaw. My Husband rushed me to the ER . they told me it was a migraine, and gave me demerol....it took just the edge off...anyway over the course of the next couple of days, I was at the emergency room twice, and at my doctors, the ER and my Doctors said it was Trigeminal Neurolgia, and told my Husband to use this Phentanyl pain patch. I was kinda in a coma for the next three weeks ( later a neurologist said due to the patch). I was taken to a neurologist,he had a fit about the patch, took it right off of me, and he had me have a Cat scan, and after that he said I had Atypical facial neuralgia. After they took the pain patch off of me..I got better right away, and haven't had any big headaches since then....but I still think I really had a Cluster Headache....am I crazy? I'm totally afraid of this thing comming back. It darn near broke us financially...we don't have insurance, and I couldn't work for almost 6 weeks......and it's almost the same time of year again...I'm afraid it's gonna come back...and the Doctors all say different things, and what they say has no cure or real treatment......help me?!

Title: Re: Is This a Cluster?
Post by RichardN on Jan 17^th, 2005, 1:25pm

Take the cluster quiz on the upper left and let us know how you do. If it's CH, you're in the right place.

Much info here and folks who not only have CHs, but other types of ha as well.

Read, read, read . . . let us know

Richard

Title: Re: Is This a Cluster?
Post by vig on Jan 17^th, 2005, 1:25pm

IT?

that's the catch. They get the name clusters from many of them coming in bunches.... I don't think I've ever heard of somebody having just 1.

Title: Re: Is This a Cluster?
Post by LindaT on Jan 17^th, 2005, 1:30pm

I took the test and was a yes to 16 of them. I said "it...because I don't know if the pain ever went away, or if the drugs made it better for a while...I was in the ER for three days running before they put me on the patch...I don't remember one minute of the whole three weeks I was on it...my Husband said that while I was on the patch,. I was only awake for about 5 minutes a day for three weeks....but BEFORE that.....I would have a bad headache...the ER would drug me up...and I'd sleep for a bit...then it would come back...time after time...I remember running back and forth down the hallway in the er...it hurt so bad....I also has an MRI done...nothing....I hate this fear of it....

Title: Re: Is This a Cluster?
Post by nani on Jan 17^th, 2005, 2:49pm

Welcome Linda and sorry you're having such a bad time. I think the first thing you need to do is see a Neurologist that specializes in headaches. You need a definitive diagnosis in order to get the help you need. None of us can diagnose you. Look around the site here and gather as much CH info as you can. Print it out and take it to the dr with you. If you have CH, there are meds that can help make your life easier. There is no cure. I hope you get some answers and some relief. Pain free wishes, nani

Title: Re: Is This a Cluster?
Post by Margi on Jan 17^th, 2005, 3:06pm

Linda, I'd had to agree with Vig here. Cluster comes in a series of attacks through the day. From 0 pain, ramping up the scale, then back to 0 within (usually) a couple of hours.

Sure, the meds could have messed you up - and most probably did - but true cluster wouldn't last like that. And, it would have kept coming back.

So, at the moment, you're diagnosed with Atypical Facial Neuralgia? Have they given you any meds to take for that? Keep pushing for an exact diagnosis but I think most of the experiences here of cluster sufferers are very different from what you're going through. If you answered yes to all 16 questions on the quiz, something's not right. Answering yes to the first 8 usually indicate different headache types.

Keep digging, Linda, and don't let the fear of this happening again overwhelm you. Be proactive and keep researching.

I found the following by typing in "Atypical Facial Neuralgia" to my browser for you. (Note: when it takes you to the website, cluster is the first type of headache mentioned, but the description of AFN is further down the page. This is happening more and more frequently these days, otherwise unidentifiable headache is being tossed into the cluster box. What's scary about that is these folks are being prescribed meds that could have very dangerous side effects and will probably do nothing to help their pain.)

Atypical Facial Pain

Atypical facial pain (or idiopathic facial pain) is characterized by deep, achy, constant, pulling or crushing pain that involves diffuse areas of the face and head. The pain fluctuates in intensity and severity. Trigger points on the face cannot be found, the pain is often worse at night, and may be aggravated by activity.

In the majority of cases, only one side of the face is affected, but pain on both sides is also possible. The symptoms may initially appear similar to trigeminal neuralgia, although progress to an atypical facial pain pattern. The diagnosis is made when the origin of pain is undetermined or when symptoms do not correlate with any other facial pain syndrome. Atypical facial pain affects more woman than men, and is often accompanied by depression. However, this disorder is not of psychogenic origin.

Treatments: Unfortunately, atypical facial pain is typically difficult to treat, and surgery is generally avoided. While radiofrequency rhizotomy has been performed, such destructive interventions may actually worsen the pain. Tricyclic antidepressant medications can provide sufferers with modest relief of their symptoms. Conventional analgesic drugs, including opioids, can also be effective in selected individuals, often under the direction of a comprehensive pain management program

Title: Re: Is This a Cluster?
Post by LindaT on Jan 17^th, 2005, 3:16pm

Thank you for answering me....when I asked my Neurologist what atypical facial nurlaga(sp) was...he said that it was just a fancy way for Doctors to say "I don't Know". I thought that it might be a cluster because the pain is so intense....debilitating in fact. I don't know where to turn now......wish there was a message boards for us "unknowns"...

Title: Re: Is This a Cluster?
Post by nani on Jan 17^th, 2005, 3:19pm

Check your messages (top of screen on the right)...you are in pain and need some support, no matter what you have. ...nani

Title: Re: Is This a Cluster?
Post by Margi on Jan 17^th, 2005, 3:20pm

HUGS to Linda - keep digging for answers.

Are you on any meds right now? Or is your pain gone?

Title: Re: Is This a Cluster?
Post by LindaT on Jan 17^th, 2005, 3:33pm

Nani...God Bless You!
the pain has been gone since the end of March...but today...I feel it creeping back....I have has minor bouts almost every day since it started in February...but no big deal...I only had to take "big" medicine a couple of times...but today....my eye is starting to water, and the left side of my head is foggy again, and it's starting to tighten up...and the pain is just about ready to come out...and I don't mind admitting....it terrifys me...I lost 6 weeks of my life last time....I'm suppose to take tylenol with codene and caffeene during the day if it's bad, and these weird little green pills at night..( husband has those) I made my husband promise to never make me use those patches again, the nerologist said that they were 20 times stronger than morphine....I swear I almost died from them. You guys are terrific...I really do thank you for listening to me......hopefully...someday soon, some Dr will figure me out! It's getting too expensive tho...but hey...I'm still here right?!

Title: Re: Is This a Cluster?
Post by Margi on Jan 17^th, 2005, 3:38pm

on 01/17/05 at 15:33:07, LindaT wrote:

I'm suppose to take tylenol with codene and caffeene during the day if it's bad, and these weird little green pills at night..( husband has those)

any idea what the green pills ARE, though?

If you feel this is coming back, I'd sure suggest letting your doctor know right away that you are feeling this way again. Maybe he can offer some kind of pre-emptive strike for you.

Title: Re: Is This a Cluster?
Post by LindaT on Jan 17^th, 2005, 3:42pm

no there at home in my husbands dresser...I quess they're strong tho....these two are what are suppose to stave off another attack.....I'm finally gonna break down and take some as soon as I get home....the codine in the daytime ones make me a little loopy...and I have to drive. I really do wish all of you the best....I'm almost jealous that you have a name for yours.... lol really...thank you all again.....

Title: Re: Is This a Cluster?
Post by Margi on Jan 17^th, 2005, 3:43pm

Linda, please keep us posted. Maybe we can help you with your research.

Please be careful! Is there someone you can call if you don't feel comfy driving?

Title: Re: Is This a Cluster?
Post by LindaT on Jan 17^th, 2005, 3:46pm

Margi...I'll be fine...I won't take any medicine till I get home....can you do me favor tho? If you hear of any people like me...can you let me know? You and Nana have really helped make me feel better and stronger today...God will have a special place for you both....

Title: Re: Is This a Cluster?
Post by Margi on Jan 17^th, 2005, 3:50pm

Linda, there was a lady here years ago (Nancy Lakey) who was diagnosed with what you describe. I know she had surgery for it but I don't remember the outcome.
She took the cluster meds, though, because a doc misdiagnosed her as well and she ended up getting quite ill from it.
One thing you could try is ice - it really does help all kinds of pain and it sure can't hurt you.
Be careful with the t3's though - the codeine Tylenol. They're pretty hard on your liver and can easily cause rebound pain.
I'll see if I can find Nancy's email address for you and see if I can hook you up with her.
Sailpappy - if you're reading this - could you also let Nan know about this gal?

update: I just emailed Sailpappy to see if he's still got Nancy's address. She is a very nice lady and I'm sure she wouldn't mind talking to you.

Title: Re: Is This a Cluster?
Post by unsolved1 on Jan 17^th, 2005, 4:04pm

THank your lucky stars you don't have clusters !!

No one has just "a" cluster headache.

Best Wishes,
Unsolved