open your eyes

Every night when I walk up the stairs in the dark it is as if someone has but a blind fold over 1 of my eyes - just 1.

I don't quite understand this phenomenon even though an opthalmologist has given me a name for it - Adie Tonic Pupil.

Sometimes in a semi dark room you can see that 1 pupil is large and 1 pupil is small. Always the right 1 is large and I'm not sure if that is the eye with the Adie or the left 1.

What I do know is that when I got that bad migraine last week it was a pain behind my right eye and my right pupil was enlarged.

I also know that it is an autonomic nervous system sign. The ANS is like a control system and is involved with heart rate, digestion, respiration rate, salivation, perspiration, pupil, urination, and sexual arousal.

Links:

Holmes-Adie syndrome at Washington University Neuromuscular

HealthLine

CYBER-SIGHT

Adie's as a manifestation of Sjogren's Syndrome

Pain pay off

There seems to be a decision when living with chronic pain. How much do you put up with the pain? How much can you distract yourself and what quality of life do you have?

When I take medications (and I have taken Topamax, Endep, Lyrica to name a few) there is always a pay off. Usually part of me, the part that relates to others, disappears a bit. Sometimes I get new symptoms like weight gain or I can't think clearly and I wonder is it all worth it. At the moment I am not taking prescribed drugs for pain and have coped for about 6 weeks using over the counter pain killers. I start to wonder what is worse - the effects of prescribed drugs or panadeine, codeine etc. Then I wonder about quality of life as I can't seem to judge if I am better off.

I want to talk to my pain specialist about my pain treatment options, maybe trying TENS or something else but the way I am feeling today just GIVE ME THE DRUGS.

P.S. I am also very frustrated at not being able to talk to anyone or make an appointment for 3 days with the pain specialist. I find this totally unacceptable for people living in chronic pain. Don't you?

IMAGE Thanks to UnderworldStargazer

Ningling and Tumbness

My symptoms are so distinct tonight i thought i better record them.
Tingling and numbness are not new to me - just the pattern of where it is.
A new symptom - tingling in just the left side of my tongue goes now together with tingling numb feeling in all my left fingers and all my left toes. At the same time the night sweats have come on very strong - i am someone who never use to sweat .
Also the pain and bubbling in both my calves is severe. The neck pain and shoulder pain has not subsided for 3 days. It usually weakens overnight.
i know this all sounds a bit depressing but i am still here banging it out on the computer.
Today I had 1 coffee and went for a nice walk.

Good News No shoes

Some days I am only good for sitting on the computer to distract myself.

I don't want to bring myself down so I look for humour or good news.

I often visit the Network for Good to see positive news updates from around the world or Good Giving which allows me to help others, and not focus on myself, right at my computer. (There is always some one worse off. As my father use to say "I thought I had it bad 'cause I had no shoes until I saw a man with no feet"

Thanks JMeganSnow for the art

Listen up.

There are a thousand chirping birds in my head most nights - in the day they reduce to a high pitched group of crickets singing in unison. I am a nature lover but this is ridiculous.

Some people might think it would be lovely to listen to these constant companions but I wish they would get out of my head and leave me in peace and quiet. They are sometimes so loud it is difficult to hear other things like what the children are trying to say to me.

I think people who have tinnitus may become lip readers without really knowing it. I noticed this when a new doctor was speaking and I had to work really hard to listen as I could not read her lips - she had a strong accent which makes lip reading difficult to the novice. I have only had tinnitus constantly for 6 years now. It is just added to my list of symptoms and no doctor (in the many that I see) has ever investigated it further.

To tell the truth it is only really annoying on those nights when I cannot get to sleep easily and I lie there listening to the sound of a thousand chirping birds...

(BREAKING NEWS: Henry Ford Hospital offers hope to the more than 50 million patients with tinnitus. )

Oh Night Divine

Can you remember the feeling of waking in the morning after a good night's sleep and feeling so good - you feel rested and have not a pain in your body. Well that is a very rare feeling for me and hundred's of others who suffer from chronic undiagnosed pain.
Better sleep is not about getting a better mattress, no matter what the salesman or The Better Sleep Council brochure will tell you. It also says on the brochure that a good night's sleep is essential for your mental health, your emotional health and your physical health and "If you think you are suffering from a serious sleep problem, such as insomnia, sleep apnea, narcolepsy or restless leg syndrome, consult your doctor or a sleep specialist" It does not tell you that your doctor may just add these symptoms/conditions to your already large list of symptoms and do nothing about it. If you think I'm angry, I am. I just want a good night's sleep...well that's a start anyway.
Apparently what I have is not life threatening - according to my doctors - I have no liver problem, no heart problem, no kidney damage (all the pain killers may have something to say about that soon!) so just give me something to manage the pain.
But I digress - the pain specialist - who is treating me as if I have fibromyalgia, as no other diagnosis has been offered, says all my symptoms may just be due to sleep deprivation. So did any one order a sleep study??? No one ever checked for tender points either!
See previous post 'Go To Sleep' Tuesday, May 1, 2007
I am not my disease - I have a life. (but it is getting smaller) Oh Sleep Divine.

PAIN

Note the capitals - PAIN, chronic pain is a strange thing. You start to live with it, you cope with it, you manage it but you do not see it is slowly changing your life. You stop doing certain things...maybe not going out at night or getting someone else to do the shopping, sitting more, exercising less...whatever. It is insidious. Then one day we have had enough and we try a new doctor, a new drug. We need to try other things but it is hard to think clearly when we are in pain and just trying to get through our day to day existence. I will try and place here links to things that help us - those in chronic pain. Maybe you could post something that has helped you.

I am going to try

• yoga
• massage
• emu oil
• hot baths

See more info on pain and a brief history of pain

"Pain is a more terrible lord of mankind than even death itself." Dr. Albert Schweitzer,

Woke up this morning and I wrote down this song

I wish.
Woke up this morning with that old friend - cramp in the foot that does not go away for hours. This is being written for the 'Forget No Symptom Project' so that the next neurologist will get to know all symptoms a little better. (I hope) The FNSP was commenced on June 24th, 2007 with Thyroid but continued with more fervour on Friday, June 6, 2008 with Electric Lady Land

Back to this morning, before I forget. Once this cramp comes it is also followed by imbalance of a somewhat mild nature - the dentist barely noticed that i was walking like a drunk - and clumsiness ( i only spilled 1 whole cup of coffee on my sons school pants while he was wearing them and while he was on his way to school).

The other addition is the sloppy ankle feeling. Don't know how else to explain this. Will the doctor know what i mean? any help from others suffering from sloppy ankle would be appreciated. Thank you.

Woke up this morning and I wrote down this song just can't remember who to send it to. Thank you James Taylor

Where 2 ?

What is required? what is needed? The 7th specialist is sending me back to the 4th specialist! He did not have any answers then so why am I to assume he would have any answers now.?
The pain behind my left eye, the one that kept me sleeping upright for 3 months is coming back, otherwise I would not be looking for where 2 go. Yes I am on the medical round a bout - I can feel it starting to spin me now. Pain is a strong motivator but where 2?

Electric Lady Land

That's what I call myself when I get this particular set of symptoms (- it's what some call my weird sense of humour to make light of what is happening.) I feel electric all over but really it's just in my arms and legs and lower face particularly mouth, tongue and jaw.
I lie in bed going crazy with this tingling, burning feeling, combined with loud tinnitus and pain in my upper legs like the circulation is blocked off. It is on both sides of my body. There is also pain in my upper arms. Getting up and walking helps. I try to distract myself with the computer but sitting still is hard as the pain burns in my toes and calves and thighs - electric burning all over. Why do I never have these symptyoms when I see a doctor? I am writing them down now so I won't forget how to describe them. The endep does not help and I have taken twice my normal amount.