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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Round Two
        
(Message started by: Des on Nov 14^th, 2007, 2:51pm)

Title: Round Two
Post by Des on Nov 14^th, 2007, 2:51pm

I looked up this website over a year ago when Nettie matched my excruciating headaches with clusterheadaches. Out of the States at the time, I struggled to explain my pain to the foreign doctors. I was told migraines, tension headaches, stress and possibly a brain tumor. But nothing helped. Pumped up on pain meds that did nothing to relieve the pain, I returned to the States and after a CT scan, was told my sinuses were jacked. Sinus surgery and, miracle of miracles, the headaches SEEMED to be gone. SO here I am, a year and some months later with the same hints of headache in my right eye. Not exactly painful, but in the same spot, the same feeling before the eye-exploding pain I had. I am fearful that the sinus surgery was wrong, that as I had mentioned to so many doctors, this is cluster headache. Everything matches up. EVERYTHING. The right eye watering, the nostril on the right side clearing up, the pain that no medicine could touch, pulling my hair out and rocking, the eye pain at night, at the same time every day no matter what I was doing. And now, the shadows are intensifying. I thought I was safe when the anniversary of my first attack passed. June 25. Now with a one month old baby, I don't think I can handle this. Just the thought that the pain could return is terrifying. Even now it's echoing in my eye. That pain. Last time I thought I was dying, now?? And!!! The posts about "cluster lumps"!! I pointed the lump on my neck out to every doctor during these attacks and was told it was a swollen lymph node. >< I am furious. Now I have to enjoy another attack before I can say look at this. Look at this website! This is what I told you! Everything I told you is right here. Sinus my butt. Now what? Wait until it hits like the darn hurricane it is and brace myself or let them know I feel it coming and watch them check the little "hypochondriac" box? Frustrated!

Title: Re: Round Two
Post by ski2k on Nov 14^th, 2007, 3:15pm

Welcome, Des.. Sorry you need to be here, but glad you found us!

First off, get yourself some Red Bull or Monster or ANY energy drink with the combination of Taurine and Caffeine. Drink it down at the first hint of a shadow, and for a lot of us, it will stop it dead in it's tracks!
Next... Print off some of the info you find here and on the OUCH site (link to OUCH on the left in yellow). Bring that info to your doc. If he refuses to check it out... FIND A NEW DOCTOR!!!!!!! You do NOT need to put up with going untreated! If you can't print the info out, give your doctor the web address, and ask him to check it out. The info on Oxygen is great, and O2 is the best weapon we clusterheads have for killing the beast!
You can also try Melatonin for the night time hits. Start out with (about) 3-6mg about 1/2 hour before bed. Try it for a week. If it doesn't help, up the dose to 9-12mg. Taking Melatonin helps a lot of us (including myself) with eliminating or reducing the night time hits. These are just helpful hints... I'm NOT a doctor, and I'm just offering suggestions based on my experiences.
Read, read, read!!! There's a TON of info here, as I'm sure you've noticed. The more informed you are, the better you can help the doctor find the right treatment strategy for you.
Try to get in to see your doc ASAP. The sooner you can get on the right meds, the sooner you can find some relief! Be sure to bring along all the cluster headache info you find here!

Hope this helps some, and welcome to the mad house! ;)
Best wishes,
Adam

Title: Re: Round Two
Post by Guiseppi on Nov 14^th, 2007, 3:24pm

Welcome to the board, you have to go to your doctor with 3 goals in mind. Educate him about CH, it's not their fault they get about 5 minutes of training in doctor school on these thngs, it's your job to do the research and educate him so he can help you.

Then get on a 2 pronged approach to these thngs. You are episodic like me. They go away, for me sometimes years at a time, then just a ssuddenly they're back.

1: You need a preventative medication. This is something you take while you are on cycle to reduce the frequency and the intensity of your attacks. I use lithium at 1200 mg a day, other popular prevents are verapamil, and topomax.

2: You need an abortive. The headache starts, nw what? Your first line abortive needs to be oxygen. Using a Non ReBreather Mask, at a high flow rate, I can abort a headache in less then 10 mnutes, usually closer to 6. You will have to push hard. Doctors are far more willing to give you highly addicitve narcotics then safe and simple oxygen...go and figure????? As Ski mentioned, energy drinks work well to abort for many. If you ca afford them imitrex injectables are effective but have some side effects.

The bad news is most doctors just don't see enough of these to recognize them. The good news is, there is enough material here for you to educate your doc and manage your treatment. We are here for you each step of the way, keep firing away with the questions.

Guiseppi

Title: Re: Round Two
Post by Des on Nov 14^th, 2007, 4:33pm

Thank you. Good to know this isn't all in my head, so to speak. Started a headache diary with the kip scale and will be stocking up on energy drinks. And will be starting a folder of cluster info for the doctor. Much appreciated.