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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> does anyone have clusters like mine?
        
(Message started by: amber on Mar 6^th, 2003, 6:11pm)

Title: does anyone have clusters like mine?
Post by amber on Mar 6^th, 2003, 6:11pm

The docs are pretty sure now that I have clusters...

But the pain you experience seems different than mine.

I have read that some people experience it differently...
I have been on Topamax for a while now but before that it's mind-numbing pain on one side of my head. It hurts to breath in through the sinus on that side of my head that is hurting...my nose will plug up a bit or run but not always...my eye waters a bit but not always. It doesn't get red and it doesn't feel like it's around my eye....

My pain is mostly centered at the base of my skull right behind my ear in the soft spot there. The veins on that side of my head are sensitive and sore to the touch. I do rock and swear and hate and curse and everything, but it's not hot and it's not in my eye.

Does anyone else feel like this? I have heard that it's still cluster like but more rare.

Amber

Title: Re: does anyone have clusters like mine?
Post by amber on Mar 6^th, 2003, 6:24pm

PS:

while i do wake up with headaches, this waking up 45 minutes or so after sleep hasn't been happening with me...maybe because i drug myself up nicely with melatonin???

grr..off to take a hot shower!

Title: Re: does anyone have clusters like mine?
Post by Prense on Mar 6^th, 2003, 8:16pm

Occasionally, I will get headaches where my neck stops and my head starts. Almost always this is in conjunction with pain at the eye on the same side of the neck. I don't always have the neck pain though with an attack...although a good HARD massage (I can not personally push hard enough to achieve any results, and it requires so much pressure that it is difficult for someone else to do this for more than maybe 5 mins without their hand cramping, etc..) right at the point of neck pain seems to nullify the headache temporarily if a Kip 4 or less. Beyond a 4, I normally do not even notice the neck pain IF it is even still there, and massaging at that point seems futile.

Quote:

It doesn't get red and it doesn't feel like it's around my eye....

You WILL know if the pain is in your eye, but best I can tell, the pain is not always centered there. Some sites list ears as a pain site as well. I think the main thing is that it is only on one side, not both and it doesn't move. I am currently seeking a neurologist for confirmation of my diagnosis as a chronic clusterhead.

Long winded, but hope this sort of answers your question.

Title: Re: does anyone have clusters like mine?
Post by das on Mar 7^th, 2003, 12:53pm

I am going to go out on a limb here and make a generalization. My CHs always start as shadows in my eye. They have never started in any other way. I would have to guess that is the case for most or all CH sufferers.

Going back to my comment about neuro's. You must realize that it is not easy, in fact it is probably impossible for a doctor to admit they don't know to much or enough about something. If they were to do that, morally, they would be obliged to send you to someone who does. Do doctors do that? Not enough or at all.

My first neuro seemed liked he knew a lot about CH, when in reality he didn't. If your doctors are saying you might have CH then my guess is you are not seeing the right person. You should be seeing a neuro that can tell you yes or no.

It's up to you, but you have nothing to lose by seeking a second, third or fourth opinion. Try the Montreal Migraine Clinic. All they do there is treat CHs and migraine. Nothing else. All the neuros there specialize in this and only this. In fact there are doctors there that only treat CHs.

Title: Re: does anyone have clusters like mine?
Post by amber on Mar 7^th, 2003, 1:11pm

Hey Das! Nice to meet you :)

I'm currently at the montreal migraine clinic, which is a subgroup of the montreal neuro institute. But I know you know that :)

Dr. Aube there is my second opinion. Well actually, if you go back in my history, he's my third. My first said hormonal migraines way back when. The second said chronic migraine, which doesn't make sense. Dr. Aube firmly believes (and he even talked to my GP who reiterated his statements that he strongly believes) that I am a CH sufferer.

Before I left he was like "I know I"m your second opinion but If you'd like, I'd like to be your doctor as your case is really interesting". There seems to be something about my headache that is "interesting" (is the word they keep using) and yet he's convinced it's cluster.

Today it hit me really hard. I woke up from a dream to this headache that was in the back of my neck as always but also pressure in my temple, around my sinus, hurt when i inhaled (which is a big one for me...it hurts all the way through the nerve that goes to the eye, all the way to the back of my neck)...my sinuses were both plugging. I was all twitchy. It's been going on since 9am and it's now almost 2pm. Yar.

The problem I have which may sound like whining to y'all is that I'm trying so damn hard to write a proper pain journal for this guy, and I think the topamax is making it impossible to tell the difference between a shadow and a ha.

The topamax has taken my daily's down to a kip 4 or 5 which is good. But it always seems like there is something there. If the kip 4 isn't there, the painful inhalation or tightness is there, so I have to write down that there is a kip 1 there. Just seems like there is always some sort of inflammation and I wonder if it's cause of the drug that I can't tell the difference.

I think that it would be more painful to be off the topamax, but it would be easier for me to give Dr. Aube a better, more thorough account of my ha's.

There's my rant. :)
Amber

Title: Re: does anyone have clusters like mine?
Post by das on Mar 7^th, 2003, 1:26pm

Have you tried oxygen?

I currently take no meds at all because I find the CHs come back anyway and I find Imitrex just brings you into a rebound loop.

I have been med free for over a year and I am in the midst of a cycle now which has actually been a lot milder than usual.

I also use shrooms.

I am happy to hear you are at the CMM.

Good Luck.

Title: Re: does anyone have clusters like mine?
Post by amber on Mar 7^th, 2003, 1:36pm

Haven't tried oxygen but would really like to as I'm so new to these headaches but already want to fling myself out the window. Imitrex also puts me for a loop.

I'm finding out very quickly that I can't handle man-made meds. My body just doesn't tolerate them. My bladder condition, interstitial cystitis, makes some of the ones that may help, like sansert, impossible to take..the rest either don't work or cause horrible side effects.

I'm going to be trying to cultivate my own shrooms soon.

Das, I'm really happy to have met you on the boards. It's nice to meet a fellow city-dweller :) Thanks for your kind words and info. I'd like to talk to you more about your experience with shrooms as I've been looking on the past years of links but always like to hear personal experience :)

Thanks!
Amber

Title: Re: does anyone have clusters like mine?
Post by jonny on Mar 8^th, 2003, 3:36pm

If the extreme pain point is not in the eye I would say its not CH.

But im no Doc, just a guy reading this board everyday for over 3 yrs and dealing with the beast chronic wise for over 27 yrs.

...............................jonny
JMHO