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Cluster Headache Help and Support >> Getting to Know Ya >> New here...from British Columbia, Canada http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1329666606 Message started by newdock on Feb 19th, 2012 at 10:50am |
Title: New here...from British Columbia, Canada Post by newdock on Feb 19th, 2012 at 10:50am
Hello all, I am a 42 y/o mother of 4 beautiful children in south eastern BC.
I am new here, recently diagnosed after years of struggles with head / eye pain. About 2 years ago, it all began with eye problems, which led me to my local optometrist (I was 40 and I thought maybe it was eye strain). I eventually ended up at a Opthamologist who actually did surgery on my eye. Still no relief. After 2 sinus x-rays, 3 rounds of increasingly strong antibiotics, hundreds of netti pot rinses, a sinus CT scan and a trip to an Ear, Nose and Throat specialist, they ruled out a sinus problem. The GP guessed trigeminal neuralgia (which looking back didn't really fit the criteria as my pain bouts were too long to be considered for that). He put me on gabapentin and things seemed to improve. (coincidence? I think so). This past fall, I moved across the province with my family. It has been a good move, but as with all moves, it has been stressful. And then there is my 19 year old daughter, who no longer lives with us, but surrounds herself with enough drama to drive any mother crazy. The stress has triggered another bout. I have seen 4 doctors in my new town (my new GP had surgery so I was shuffled around a bit). 3 of the 4 have never seen cluster headaches. The 4th was an ER doc who was old and crusty and lacked any semblance of bedside manner, but took one look at me upon my arrival to the ER and nailed the diagnosis. He printed out a 4 page document on cluster headaches, which I highlighted every second word as the whole article was apparently written about me. So I was diagnosed. And I've done as much research as I can. My GP gave me a guest pass to a doctor's only website so we could learn together. So far..... oxygen - didn't seem to work well for me and I found it irritating because of all the leaking oxygen blowing on my eye and forehead. Now that I've done some research, I know that the crappy mask I was given as a freebie is likely the issue. I will be trying it again once I get a better mask. Imitrex - I am not yet trained to use the injectables, but I have the inhalers. They work, but if I use a high enough dose to abort, I am stuck having to choose headaches as I have on average 6 a day. Zomig - I have tried the quick dissolves and they work pretty good, albeit, it is a longer wait for relief. This was done as an emergency alternative to Imitrex as my town is small and the pharmacy had to order them in. Verapamil - I started on 360 mg and an up to 480 mg now. It doesn't seem to affect my already low blood pressure (other than the first few days while my body adjusted). I had an ECG, which was perfect. Prednisone - I LOVE PREDNISONE. I got relief within 18 hours of the first dose. Just finished a taper, and by the time I got down to 20 mg, welcome back Clusters. Doctor wants to try another round after my body rests a few days. Melatonin - 10 mg each night - not sure if it's helping, but it ain't hurting either.... Acupuncture - pretty sure it didn't help Massage - it has helped with all the muscle tension I get from freaking out during the attacks. It is nice to get "positive" physical feelings and has helped with my mood. Vit B complex Magnesium I have just read about the fish oil / Vit D combo and will give that a try. I prefer heat on the outside (close to scalding heat) and cold water in my mouth. I hold the cold water in my mouth until it warms up and then take another mouthful. The heat I hold on my forehead above the affected eye. Once the headache starts to subside, I will lay down with it on the back of my neck (if I can stand to lay down). Recent Tests - ECG (for increasing the verapamil) ESR complete blood work waiting for a brain CT My dr. is referring me to a neurologist, but here in Canada, the wait times for specialists can be long. I haven't heard yet when I will be able to go. A regular GP cannot order MRI's....they have to come from a specialist. And I cannot see a specialist without my GP's referral. And yes, I have hazel eyes and typical round lion face shape and large neck size. |
Title: Re: New here...from British Columbia, Canada Post by Mike NZ on Feb 19th, 2012 at 1:31pm
Hi and welcome. It sounds like you finally got to see the right doctor eventually with the right mix of skill, knowledge and experience to identify CH.
Oxygen can be extremely effective at killing off CHs. I can kill mine off in about 5 minutes with a non-rebreather mask and a flow rate of 25lpm. However you need to use it right for it to be effective as using nose canulas or a rebreather mask make it barely effective at best. There is a load of info on using oxygen using the link on the left. For verapamil, most people with CH respond at between 360 and 480mg, however some need to go a lot higher, some as high as 1000mg, which is a lot, lot higher than the standard use of verapamil for low blood pressure. Prednisone is great but it can be pretty severe on your body, so don't use it too long or too often. It is also great for putting on weight as it makes even cardboard taste amazing Do try the vitamin D combo as a lot of people have been having great success with it. Keep reading and asking questions! |
Title: Re: New here...from British Columbia, Canada Post by newdock on Feb 19th, 2012 at 10:41pm
Thanks for the info. I will read up on the articles and let you know if I have more questions.
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