I don't know if this is appropriate, but I would like to say (before more important issues) thank you for this....

You have composed a message that, hopefully, most will take a moment to appreciate and another to consider their blessings. So much we take for granted; seldom pausing to acknowledge the gift of health and ability to traverse our paths without crippling impediments.

Thank you.

I hope and pray that soon, very soon, there will be a source that will stop your pain without negatively impacting your other gifts.

I so enjoy your posts.

Thanks Aunt Sam. I thought multiple times about whether to post this or not. But I figured that others may be (or have) struggled through such things (or having those close to them doing so). It is an intensely personal struggle - but health issues are. In being so personal, they also make one feel very alone in the journey.

Truly we must meet these challenges alone, but the support of friends and the shared experience of others can help ease that sense of isolation. At least I have found it so.

The other component is that because of the medication type I have been on is also used to treat bi-polar disorder, and my experience with its effects, I have a new appreciation for why people "go off their meds." I can fully understand why they would; why it is so difficult to daily chain your brain and emotions so one can "function." There has got to be a better way.

Thank you for your kind thoughts and support.

I have another friend here who has blogged about his pain. I will leave it to him to reply here.

As I get older, the aches increase greatly. Aches are different than pain.

A couple times a month I get a wake up and the pain is there.

I am a coward, methinks. I am afraid if I was going thru what you are going thru, I would dive into pain killers and never come back.

I would lose the one thing I treasure--this place. The activity. The challenge.

To say hang in there Rowan sounds toooo trite.

BUT HANG IN THERE.

You have been a great source of knowledge here.

I always look forward to reading your posts and comments.

Gamma Knife. Took me a while to remember the name of the treatment that helped a friend with her trigeminal neuralgia. Non-invasive. That's all I remember.

But, I hear you about the peculiar ride of medication side effects...and allergic reaction to medications. I've been to that non-amusement park a few times myself.

Like Roseanne Rosanna Danna would say, "I thought I was gonna die!"

Rowan, if your "re-awakening" gave you the ability to write like this, the treatment may have been worth it. I am so impressed with your ability to describe the indescribable. Thanks so much for your post. I agree with Jason and others that acupuncture may give you just what you need.

Take care of yourself, and let us know how you're doing.

I injured myself about 16 years ago when I 'augered in' during a in-line skating accident. The immediate fallout was a broken clavicle. That healed, but a lingering pain in my back persisted. I was able to sleep about 2-4 hrs. before I would wake and need another pain pill to allow me to sleep. I can remember 'moments' from that time when I would experience a brief moment of painlessness in which my mind would clear, and I would feel as if it was those painless moments, which made life worthwhile. I eventually found one of the top neurologists in the country, (@ Johns Hopkins), who correctly diagnosed the cause of my pain and referred me to another surgeon who performed the corrective neurosurgery. I think I have an idea what you're experiencing Rowan. Your solution will be less well defined than mine was. I wish you well, and recommend you savor the pain free moments, (as if I had to say it!). Those moments, taken for granted by those in good health, can seem like a miracle to those suffering chronic pain.

Hi Rowan,

I appreciate your presence with yourself and sharing it with us.

Just during this past week I was hit with allergies harder than I have been since I first discovered I had them over 20 years ago. I have moved from IN to CO and since then this is the first year I've had a problem. I prefer not to take medications unless I feel I absolutely must because I have a tendency to react partly from chemistry and partly because I was raised as a christian scientist so we never took meds for anything when I was growing up... not so much as an aspirin.

Moving on... the sinus pressure and the feeling of breathing in steam pushed me to try medication. The first was ineffective. The second was some 'over the counter' drug you have to sign papers for and is kept behind the pharmacists counter. I asked at the time why I had to fill out so much paperwork and were there risky side effects involved or something... the pharmacist then mentioned that people used it as an ingredient in makng methanphetamine. I cringed but was hoping it would be effective and I tried it.

It seemed to be working the sinus pressure was greatly relieved and I thought I had made the right decision. I could not sleep the first night but I assumed it was really just not feeling well etc. This is 24 hour medication you take once a day. I took it the second day and I was feeling functional and releived but once again I barely slept an hour... and then the third night as I could feel how tired my body was I thought surely I would sleep. I decided to go online and read about the medication and it stated online that one of the main complaints was sleeplessness. I made the decision then to stop taking it. But the evening was an experience in sleep deprivation. I observed the struggle in my body to sleep and felt some strange element of energy not allowing it to happen. I had to wait out the medication getting out of my system in order to sleep. In that evening I watched my mind and my thoughts get very surreal and strange and the effects of sleep deprivation on my train of thought and I observed my reflection, judgement, or usual ability to reflect and respond to my thinking was weakened. I felt somewhat thinking or presence handicapped. Something about my relationship with my thinking was impaired perhaps just from the lack of sleep.
I relate to the strangeness of the experience you described. Altered states...

I went to the pharmacist today and put a bunch of optional medications in front of her and said I need sinus relief that will not keep me awake and we went through them all and chose the one seemed best. So far so good but my sleeping pattern is messed up now and I am up in the middle of the night.

I do hope that you will be able to find treatments that will be less disturbing for you. It doesn't make sense to stay with the same family of drug if you had a whole body rash.
Thanks for the intimate sharing.

I want to encourage you in the strongest language to continue to write on this subject. Many people suffer pain but as you suggested and as is so amazingly true, little is written about the personal experience that is more than the list of side-effects printed on a prescription label. It encouraged me just to read your words.

I can tell from what you have written here that you are a person who above all treasures the moment of self-awareness. That moment is of course the spring from which all culture flows. It is for that reason that I would encourage you to continue to express your thoughts on this. To me this is really what pain is all about. Pain is like a cave where you are alone and you desperately want to leave and rejoin the group. The body struggles just to live and will engage in all manner of frantic attempts to do so. But the mind or self or whatever one might call it wants much more. It wants to engage the world. It wants to be part of the dialogue with everything else – the wind, the plants, the cat, music, other people. Pain says “No.” Pain says “You are alone in this cave.” The mind says “I want to leave.” It takes courage to side with the mind and keep up the struggle to rejoin the world.

Great piece, Rowan. Just to add one thing to what others have written on pain & depression. About 5 years ago, I had a series of concussions. I'd had many as a jock, but then had 3 in a row from walking on the ice - and the 3rd was a doozy. But I didn't KNOW it was a doozy.

Then I began to realize that my MIND was alterred, as surely as on any drug, but I didn't know HOW. That "I" was changed, but not being able to step outside this now broken "I." The way I figured out I wasn't "right" was at work. Doing things I KNEW I could do, like writing, because I had written examples all around me. I could write one great paragraph, look at it, and think - "There. Proof. I'm fine." Then write another good one, think, "Yeah, absolutely. You're fine." But then read the two together, and find they... didn't connect. This amazingly spooky feeling. To know you were you, but weren't the "you" you'd known. And that the problem was... "you." In meetings, I noticed I was tending to give on short tight fact-based answers - the knowledge was there, but any ability to connect points or form a path or strategy, was gone.

Disconnected. But disconnected from my own SELF. Unable to see any path, think long-term, form strategies - at work or in life. And this went on for months. It was like sailing along in the hold of a ship, with no sense of ever being above-decks, in the sun, no memory of it or experience of it, just some notes on paper describing it. Stranger to myself.

Long story short, it clicked back in place. Donno what or how. And that feeling... EXACTLY as you describe. It sounds almost selfish or cocky to take such complete joy in the workings of one's own "mind" - but truly, I was like a kid with a toboggan. I wanted to write, read, see films, walk, talk, dance - anything. Because yes, it was my mind back. But it was also very much ME coming back.

Best way I found to describe it was what it was as though I'd been living, swimming, walking underwater, never knowing for sure there was an air-world above, and then that rush as your head comes up out of the waves. BLISS. Just to have oneself back.

It's good to have you back. Do the pain for a bit more, if you have to. But then... just leave it on a shelf for a while. And come on back - full, free, yourself.

Rowan,

This is absolutely heart wrenching to hear. I wish you the best.

Losing one's brain is the worst. My only limited experience was when I quit smoking and found that for about two weeks I could not do basic math and had difficulty with logic exercises- I freaked out and was about to start smoking again until I found out that this often occurred as your brain readapts to life without nicotine. Happily my functions quickly returned, had they not I would have gladly accepted poor health and a life of social ostracization in exchange for the ability to think.

Despite the difficulties, I really hope that you will continue to pour some of your energies into your excellent posts. They are always well researched and informing and I continue to learn from you. I have found that when I have suffered misfortune maintaining a productive outlet is very helpful.

BTW- If interested I can recommend an acupuncturist in Multnomah village who rescued my knee. Although you probably would like to find one who is experienced in your condition (i can ask let me know).

Low level laser therapy is also known to be effective for TMG/TMJ.

Rowan:
I am late in responding to your thread, which I read this morning before work.
First, my encouragement that you listen to your own instincts about medication, or alternatives. You know what works for you, and what does not, based on your own experience and your own priorities.
Second, as someone who has adverse response to many drugs, I recommend that you read some of Matt Wood's books, particularly The Wisdom of Herbal Medicine.
http://www.matthewwoodherbs.com/Mattwood.html
Matt is as much scientist as herbalist and a valuable resource for those with allergies, or extreme responses of whatever nature to whatever. (Full disclosure: Matt is a cousin of my second husband, but even I don't hold that against him. It's a brilliant family of accomplished people, and Matt is one of the best of them, combining brilliance with complete commitment to helping his fellow man, or woman.)
Third, before I read a single word you wrote, you had my undivided attention and respect for selecting a manatee as your avatar. When I lived on a canal in Florida, the highlight of my day was watching a manatee family cruising gently by.
Fourth, and most important, you matter here. Yes, you write beautifully, but you also think beautifully, with clarity and compassion combined.
Whatever it takes, Rowan, for you to be at ease.