A ClusterHead's Life

Here are a few articles regarding the links, of sleep apnea and cluster headaches. Does sleep apnea cause this painful disorder?

Does sleep apnea cause cluster headaches? ...researchers also found that patients with active cluster headaches had significantly higher maximum end-tidal carbon dioxide levels than did those whose cluster headaches were inactive during the study. "It is possible that a decreased responsiveness to carbon dioxide may trigger headaches,"...

An article titled
Sleep Disorders May Cause Cluster Headaches from June 2000 states
"..25 people with cluster headaches were evaluated in a sleep laboratory. Of those, 20 people, or 80 percent, showed some signs of obstructive sleep apnea, a condition in which the upper airway closes during sleep, breathing stops, and sleep is briefly but repeatedly disrupted throughout the night."

Here is a brand new study, August 2005, about sleep apnea titled Clue to why some die during sleep by the University of California.
"...a cumulative loss of cells in the area of the brain that controls breathing is to blame - triggering a condition called central sleep apnoea."

General information on connection's between Sleep Disorders and Headache.
In patients with cluster headaches who have sleep apnea, it is suggested that they may be experiencing an episodic decrease in oxygen during the night that can precipitate the headache attacks. In patients who have chronic cluster headaches, it is noted that two-thirds of the attacks usually occur during the last two hours of sleep.

If you have clusters headaches or just do not feel rested in the morning, talk with your doctor about a test for sleep apnea might not be a bad idea. Cannot hurt to find out. Getting tested might save your life. I am scheduled for my test in the first part of September.

Paul
Half the modern drugs could well be thrown out the window, except that the birds might eat them.
-Martin H. Fischer
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Sorry I have not posted in such a long time. The normal excuse of pain and seizures apply. Speaking of which, yesterday I went in for another EEG. This time the technician had orders to try and induce a seizure. She had little luck with that but succeeded with triggering a doozy of a cluster.

She was pleasant, looked a bit on the tired side. She motioned me to an uncomfortable looking gurny. There she covered me with a blanket and then started to paste (and I do mean paste, as in glue) numerous connectors to my head. For anyone who has not had an EEG done , it is a dull experience assuming they are not trying to induce you. I laid there while following instructions to open and close my eyes, breathe deep through my nose and out through the mouth almost to the point of passing out, close my eyes to have a light, kind of like a strobe, which she turned on inches from my face, she made various noises and the worst of all sticking a cotton ball of gawd knows what under my nose. That is what cause my cluster. Of course to make such she did it twice. Just to be on the safe side I guess. Maybe the first attack was a freak occurrence or something.

The whole process took about roughly 45 minutes. When the EEG was all finish I went straight home and right to bed. 18 hours of sleep later I emerged from the bedroom still feeling the effects. Only the past couple of hours have been good to me. This evening has been spent divided between working on my blog trying to get a few articles completed so a do not have such a break between posts and tweaking my Linux server for voicemail. I hope to be back posting on a regular basis from now on. Knock on wood.

Paul

Chaos can be bad,
but order can be worse
- Unknown
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Learning how to cope with a chronic illness is by far one of the hardest dilemmas someone can go through in their life. Yes, I said dilemma. As in a choice. Because when we are ready we have to accept whatever the illness or disorder maybe it will be part of our life for the fore-seeable future. If we do not choose to deal it then it will eat away until it becomes fatal. Maybe not right away but bit by bit the person we were prior it will no longer be recognizable. regardless of the nature of the illness. There is a great link titled just "Coping with Chronic Illness". Adapted from the book 'After The Diagnosis' by Dr. JoAnn LeMaistre. Well worth the read. This could have saved me from a lot of turmoil. Just to know what I felt was normal could have made all the difference in the world. Later this week I think I will head down to the local library to check out the rest of the book.

Also a Imitrex tablets with RT Technology have been found to absorb 6 times faster than regular tablets. Check out the news release here. I can't see this being overly beneficial for clusters but would surely help the migraine community.

Paul
An educated person is one who has learned that information almost always turns out to be at best incomplete and very often false, misleading, fictitious, mendacious - just dead wrong.
Russell Baker
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Yesterday I headed off to what has become my annual Neurologist visit. This visit was mostly about what to told about the seemingly increased seizure activity. Epilepsy has been a problem since the first day of experiencing cluster headaches. Clusters keep me awake and the seizures cause sudden exhaustion. So much for having any sort of a sleep cycle.

The neurologist was in quite a good mood as I was his last patient before his vacation. The bonus of being last was he took a lot of extra time with me because the seizures and clusters both have a lot of atypical symptoms. For example, he has a diagnosed me with having Hemicrania Continua because the cluster headaches more frequent than most chronic sufferers usually get. But besides, they have to write something down in my file. He does acknowledge though that they are cluster-type headaches. Which I think is good. Mind you I would much rather be diagnosed with a tension headache. If I had a choice I would not have anything that would require me to go to a Neurologist. No disrespect to those of you dealing with tension headaches is intended.

I arrived at the appointment completely unprepared. After the past six weeks I am surprise I arrived at all but to my amazement on time. We went through the usually formalities. Going over why my gp wanted me to see him; explaining in my own words what was going on. Then had a few neurological tests performed. Followed his finger from side to side and up and down. Counted fingers in various positions. Walked in a straight line one foot in front of the other then walked normally. He scratched the outer soles of my feet. Checked for muscle weakness and reflexes. Then finally a few co-ordination tests. He ordered more blood work and suggested I should think about taking Topamax. Could have sworn I have tried that early on and had some sort of weird reaction to it. Will have to check my Headache Diary. Sure comes in handy in times like these. That is something every headache sufferer should have.

After all that he is still stumped or at least not telling me what he thinks. He sounded like I past all of the tests. He ordered yet another EEG. This will be the third one in 2 years; as well as the 2 prior CT scans on my head either. Since the last 2 EEG,s were normal this might be a good time to start to do more specialized tests.This one will be a specific type of EEG that is "fine tuned" as he called it, to induce a seizure. Not quite sure exactly how this one will be different than the last two. Will they add sounds or movement? The last 2 EEG,s have been normal now might be time to do a little more specialized checking! We will just have to wait and see what happens.

Seizures drain the life out of me as it is. The last thing I want is to try to induce one. I can already feel that day will be a bit of a right off depending of course how many they induce. But if the results bring us any closer to solving what is going on then I am all for it. Also he wants to have a chat with my girlfriend, Mindy to get my background information on what she observes. She has the unfortunate pleasure of seeing me shake while sleeping though I can never recall if anything happened. Sometimes recalling events is difficult because I tend to "blank out" then turn into a bit of a zombie. In addition, I am not always conscious for each bout. Makes diagnoses a tad on the tricky side. Right now I don't officially have seizures because the test do not show anything but the treatments for seizures work. Go figure.

There is one thing about trying to figure out what is happening to me that kind of bothers me. Does finding out really matter? I mean will my treatment change? As far as I can tell everything has been tried. Controlling the pain and aiding me to have a some what everyday life will still be the goal. More than likely there will not be any significant changes. Regardless of the outcome of the tests nothing will really change other than the fact that a disorder will be written into my medical file for future reference. The only things I can think of for the situation to change is if the disorder is somehow degenerative or if I am lucky, fatal. I only say lucky right now because of the immense, unmanageable pain of late. Don't worry I am not depressed just exhausted from battling for so long with this. But no matter what the outcome from all the tests, medications, appointments, and advice, myself and those around me will still be affected by the results of it. The only thing that is known is the pain will not be going away anytime soon. That my friends, is the most disturbing and discouraging part of it all.

Paul
It's odd that you can get so anesthetized by your own pain or your own problem that you don't quite fully share the hell of someone close to you.
-Lady Bird Johnson
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This is the WORST cluster cycle I have had since pre-medication days. I think I have already mentioned this. Kip 9 & 10's almost hourly. To top it off I have run out of my seizure meds and am too sore to make it too the dr. for some more. Talk about a snowball causing an avalanche. Later this morning I am going to drag myself crying if I have too. Heck I will probably be crying again by the time the offices open.

I did really forget just how badly I hurt before my diagnose. Quite frankly I'm amazed I survived. The only thing I which has changed since the start of this cycle as far as I can figure is that I pushed my dr. to take me off of Neurontin. BIG MISTAKE! Looks like I will never be without it again. Assuming of course that restarting helps. Thankfully I have a neuro appointment on monday so I can run everything by him.

I realize this is more of a ramble than normal. I just wanted to say hi and let everyone know the reason I haven't been posting is because I am really, really sore. Hope other cluster sufferers are getting the summer off at least and are pain free :)

Paul
It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.
-Julius Caesar
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