6 Weeks Later...
Monday, July 17, 2006
Firstly, I would like to say thank you for all the support I have received since my last post. It made a world of difference.
Second, if you do not know the meaning to a particular word simply double on it and a dictionary page will find the definition for you. I thought this would not be a bad idea just because of all the medical terms. I hope this will be beneficially for you. Your feedback is always appreciated either through comments after each posting, the guestbook at the bottom of the page and of course my Email. I will look forward to hearing from you.
Well after many months of agony, sleepless nights and trying to somehow prove to my dr. that my break-through pain is not no longer a seldom occurrence but a serious issue again, my doctor and I were able to adjust my medications to the point that the pain is NOT the number one issue anymore! How great is that? The other symptoms of a cluster attack are still present. For example, the facial sweating, rhinorrhea(nasal congestion), osmophobia(not extreme but enough for me to going to stores that have the perfume section by the front entrance, clouded thinking just before and right afterwards, and of course everyone's favourite mood swings. This is the lowest level of pain since before this nightmare began. With any luck I will be able to regain some of my former self and lifestyle back. For the first in a long, long time I am almost content with the way my health is for the most part.
The best approach my team of doctors took after realizing I was unresponsive to various degrees of the usual course of treatment for cluster headaches was to treat it as a long-term chronic pain issue. Which of course it is. Being one of the very unlucky few who does not respond well to the triptan family of medications, ergotamine and so on. Coupled with other health problems a different approach was desperately needed and so far it seems like the right one. Mind you, there are not many viable options left. The last resort would be to have surgery. The long term success rate is not that good and the chance of something going wrong is not currently worth the risk, for me at least.
The triggers are still as prevalent today as they have ever been and would of normally caused an attack to be brought on faster, if not instantaneously or amply the level of pain in the current cycle and increase the frequency of attack. Now I noticed the attack but the pain is almost gone. I have to admit it is a very strange experience. Thankfully, most triggers can be avoided but there is always that one person who has to fill the entire room with their perfume/cologne. Sheesh people it's not bug spray!
I do not know why I bother to try and differentiate between cycles but I will anyways. What else is there to do when you spend hours a day with an icepack on one's face. Over the course of a year I may have 7 to 10 day off in total. However, with that said I can tell cycles from one another. They may be ongoing but each seems to have a distant 'personality' if you will, depend on factors like food, weather, stress(that's a big one), health, how the body/mind is recovering from the last bout and so on. Knowing the environment around me helps me to be more comfortable during each attack and does minimize the trauma of the ordeal.
I can't be the only who has noticed this. It might be easier for chronic cluster headache sufferers to notice for the main reason of sheer volume of attacks. The other day I worked out some numbers for my sister not even realizing just how many attacks I have each year. This is of course a rough guesstimate. 365 days a year times 4 attacks per day equals roughly in the neighbourhood of 1460! That means I have endured well over 6000 attacks. This is of course have the week or so I have off a year included or the increases during various cycles throughout the year. I am taken aback by this figure. So much pain in such a short time. No one deserve that. How was I do it?
Paul
If we could sell our experiences for what they cost us, we'd all be millionaires.
Abigail Van Buren
EDIT: Fixed post date to the proper one and changed title from 'Latest Update' to '6 Weeks Later...'
0 comments
Second, if you do not know the meaning to a particular word simply double on it and a dictionary page will find the definition for you. I thought this would not be a bad idea just because of all the medical terms. I hope this will be beneficially for you. Your feedback is always appreciated either through comments after each posting, the guestbook at the bottom of the page and of course my Email. I will look forward to hearing from you.
Well after many months of agony, sleepless nights and trying to somehow prove to my dr. that my break-through pain is not no longer a seldom occurrence but a serious issue again, my doctor and I were able to adjust my medications to the point that the pain is NOT the number one issue anymore! How great is that? The other symptoms of a cluster attack are still present. For example, the facial sweating, rhinorrhea(nasal congestion), osmophobia(not extreme but enough for me to going to stores that have the perfume section by the front entrance, clouded thinking just before and right afterwards, and of course everyone's favourite mood swings. This is the lowest level of pain since before this nightmare began. With any luck I will be able to regain some of my former self and lifestyle back. For the first in a long, long time I am almost content with the way my health is for the most part.
The best approach my team of doctors took after realizing I was unresponsive to various degrees of the usual course of treatment for cluster headaches was to treat it as a long-term chronic pain issue. Which of course it is. Being one of the very unlucky few who does not respond well to the triptan family of medications, ergotamine and so on. Coupled with other health problems a different approach was desperately needed and so far it seems like the right one. Mind you, there are not many viable options left. The last resort would be to have surgery. The long term success rate is not that good and the chance of something going wrong is not currently worth the risk, for me at least.
The triggers are still as prevalent today as they have ever been and would of normally caused an attack to be brought on faster, if not instantaneously or amply the level of pain in the current cycle and increase the frequency of attack. Now I noticed the attack but the pain is almost gone. I have to admit it is a very strange experience. Thankfully, most triggers can be avoided but there is always that one person who has to fill the entire room with their perfume/cologne. Sheesh people it's not bug spray!
I do not know why I bother to try and differentiate between cycles but I will anyways. What else is there to do when you spend hours a day with an icepack on one's face. Over the course of a year I may have 7 to 10 day off in total. However, with that said I can tell cycles from one another. They may be ongoing but each seems to have a distant 'personality' if you will, depend on factors like food, weather, stress(that's a big one), health, how the body/mind is recovering from the last bout and so on. Knowing the environment around me helps me to be more comfortable during each attack and does minimize the trauma of the ordeal.
I can't be the only who has noticed this. It might be easier for chronic cluster headache sufferers to notice for the main reason of sheer volume of attacks. The other day I worked out some numbers for my sister not even realizing just how many attacks I have each year. This is of course a rough guesstimate. 365 days a year times 4 attacks per day equals roughly in the neighbourhood of 1460! That means I have endured well over 6000 attacks. This is of course have the week or so I have off a year included or the increases during various cycles throughout the year. I am taken aback by this figure. So much pain in such a short time. No one deserve that. How was I do it?
Paul
If we could sell our experiences for what they cost us, we'd all be millionaires.
Abigail Van Buren
EDIT: Fixed post date to the proper one and changed title from 'Latest Update' to '6 Weeks Later...'
0 comments
0 Comments:
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.*
