Long, Hard, road out of hell

Tuesday, November 09, 2004

No matter what I have done in the past 7-10 days the attacks just kept coming. I am soooo exhausted! They came every hour, like clockwork. One of those weeks where I begged for death but the Reaper just sat back admiring the pain and torment. There is no way to escape this! Bloody hell. Some days I wish this dam disorder was terminal. Be a bloody painful way to go though.

Now my seizures seem to be back in full swing. They are kind of strange. Only occurring for about an hour in the morning. Not actually having one long seizure but a whole bunch of little ones. This used to happen alot before I was on seizure meds. Still, even then I was subjected to a few a week. However, when the pain has become absolutely intolerable my brain overloads and shorts out. I haven't found a good explanation for this. More to the point my dr. and I don't agree on the reason. I say it is because of the pain. Mainly because that is when I get them. And he thinks they are just seizures which are not detectable by a ECG test. Go figure. I believe he thinks I am not telling the whole truth. Some dr.'s stop believing the patient if the problem can't be seen under a microscope. My dr. believes now the diagnoses has been made, I should learn to live with it and the pain is manageable enough. Personally with cluster pain being so incredibly intense that it ranks up there with bone cancer and child birth, it should be treated with more respect. At the very least give the patient some.

I have doing some more reading, between attacks, about pallative care. How we as a society treat the terminal ill, people who want to end there lives through euthanasia, hospice societies, right to die movements, and so on. This has been a interest of mine for quite some time now. I've read so many books, articles and so on that the library has very few I haven't read. Can be a bit of a depressing subject.

We have a tendency to want to have individuals who are sufferering greatly around for our needs, not theirs. I think it's time we starting to welcome death. Not fear it. Death is a perfectly natural part of life. For some reason as a culture we have made it this taboo subject. I haven't come up with a good reason why this is. Most religionous talk at length of death being a grand journey of sorts. So why do we make people sufferer so long? In some case we don't even like to tell the terminal ill they are dying. An individual who is deathly ill can tell normally tell they aren't doing so well. Why do we baby them so much with lies and false hopes? Maybe it would be a good idea to tell so they can get their affairs in order because they leave. Wouldn't that be better? Help them be at ease before they pass on.

I could talk for age on this topic. However, my brain is over worked. Funny, I had all these things I wanted to add to my blog which I up with during my lastest, neverending bout, and here it is 6 days later with me posting not much of anything:) I need to start writing things down:)




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Medical terminology can cause confusion at the best of times. If there is a word you do not understand all you have to do is double-click on it and the definition will appear! Don't forget to drop me a line by email at versilleus@gmail.com with your comments, questions‚ recommended resources‚ concerns‚ & especially your experiences with clusters. Or come find me on my Facebook Profile to add me as a Friend. Whether you are a supporter‚ care-giver or sufferer. I would love to hear from you!

*Please do not use this information for self diagnoses. Writing about my experiences with chronic cluster headaches & epilepsy is a good outlet for me. Consult your Dr. with any kind of headache or chronic pain you may have. The 3rd party links on my site I have found to be a good resource to me over the past few years & dearly hope they will benefit you as well.*

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