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1

Hi friends,

This week has been horrible for the most part, and as most of you know so has most of this year to date.

Wednesday just gone - I arrived at the country hospital in agony, lightning, spasms, shooting pains - basically, the works on all three branches, plus deep inside my ears and inside my throat and tongue too! Never had those last two before. Long story short, the country hospital behaved rudely, and was just shy of throwing me out. They say I’d been there too often and they couldn’t & wouldn’t help me any more.

Thursday was a new day. I was still in agony. I’d barely got a wink of sleep now in three days. There was TN pain in places I’d never felt it before. Deep in the ear, both sides, my throat too, it felt like a sore throat plus nerve pain, though I did not have a sore throat.

I decided to drive to the City hospital - “Gold Coast Hospital”, they have Neurology residents on call there all the time - providing you arrive between 9 am and 5 pm :slight_smile:

I signed in at triage and sat down to wait. My turn came - it is a busy hospital, major trauma centre, teaching hospital etc. The nurse took my vitals and I returned to the waiting room. Surprisingly, I only had to wait another half hour.

I was seen by a “Junior House Doctor” who after a prolonged time taking my history ( that should all have been on file - I had been there before! But anyway, there weren’t any beds or cubicles available due to the amount of trauma victims on the ED.

After a lengthy discussion and her checking me out - she said she’d been approved to give me Panadeine Forte. I took the pills. She said for me to wait half hour to see if they helped and if they did they’d write me script. I may as well have eaten lollies. While she was gone - she discussed my case with a Neurology registrar - I never met this registrar and also with her boss a “Senior House Doctor”, who then came and introduced herself to me.

By now, I’d been at the hospital 4.5 hours and had some panadeine forte and was still in great pain. I was in tears, rambling to them how every doctor just walked off without resolving and of my issues and that the buck was always passed to someone else and I just wanted them to stop my pain, to take it away. So they walked off and continued discussing me out of ear shot - and then her boss came back. I was about to leave as they weren’t going to help me out either it seemed.

Then out of nowhere I was given an offer. The wanted me to spend the night at the hospitals observation ward. Where I would be monitored and tried on a drug they hoped would help me. That if it was beneficial that they’d write up a script of it for me. I discussed it with my Mum, because my Dogs had been locked inside my house all day, as one of my dogs is an escape artist - but has yet to learn how to unlock a key lock door :slight_smile: But Mum had been hoping they would keep me overnight.

Not one single doctor has had it in my best interest to work out the best medicine regime for me to date - no one has helped with pain medicines either - I mean panadeine forte is great if I’d strained my leg or something. My sisters say that panadeine knocks them out and makes them really groggy. As I said earlier, for me it’s just like eating lollies…

So, I stayed overnight in hospital.

Sorry, I’m a bit out of it now. Mum came to my house and took my Dogs back to hers - complete with their food bowls and everything!! She brought me pyjama’s, fresh intimates, a make-up and wash bag, magazines, books and much more. I was only going to be there one night!! But how sweet was that!!

The drug they filled me with during the hospital stay, was more Panadeine forte AND Oxycontin!! Not to mention a jab in my backside of toradol that they said they wouldn’t give me. So, I was early to bed. Not like there was anything else to do. It’s the room next the the trauma room, so lots of awful sounds, carry on and what not - but the meds keep me quite docile. Except for the nurse doing the 2 hourly vitals, checking yr BP, heartrate temperature and what not, making sure the oxycontin or the toradol wasn’t killing me I guess.

So, that was my Thursday night. (In the US, that would have been Wednesday :slight_smile: )

I’ll leave this page at this and continue in the next post or this will cut me off = such a long letter :smiley:

With well wishes to all on this wonderful Living With TN site!! Stay tuned for part 2

~ Kerry ~

2

… And now for part II (2)

They woke me early Friday morning. I’d been told I’d get to go early in the morning. Well, that was a lie. I was woken at 6 am and given another oxycontin tablet. Geez, that one affected me more than the night pill did. But I suppose after the night pill, I was able to go to sleep.

Around 7 am, the ED Supervising Doctor / Trauma surgeon came in and sat on my bed to discuss what could happen this day. He is very cute and wore no wedding ring so I felt silly, I’d had hat hair and been sleeping on hat hair, was drooling into the pillow when he woke me - so I felt so ugly at the time, but he was very nice and ignored all my concerns about my appearance.

Anyhow, it’d been his idea to give me the Oxycontin tablets. He wanted to get me into the hospitals pain clinic asap and was telling me the Doctor who ran this pain clinic was a friend of his and he’d be done shortly to talk with me!! Wow!!

My GP has been trying to get me into this pain clinic for months - with no word from them whatsoever!! But within 15 minutes of the ED supervisor leaving me, the Pain clinic specialist arrived to chat with me. I was still hurting in places, but not like I had been the day before, but even being that the TN I get is bilateral, this day it was just all right sided. This man Dr Elishae came in and put these magnets on potential trigger locations on my face. Gee, it hurt at first and he applied a good deal of pressure and with my help placed them on major trigger points. I don’t always have triggers, but when I have pain, the triggers appear. I was shocked at this treatment, no permission was asked - he just walked in and did it. That was our introduction.

He said great, removed the magnets and lo and behold, my pain was reduced froma 6 to a 4! I told him this, he said that’s wonderful and walked away. In 10 minutes he returned with a tray of needles - note that all this time, my world is stunned and spinning from these Oxycontin tablets I’d had… The needles, again with my help, located the trigger points on my face and injected the needles full of local anesthetic to those points, and ouch that hurt, especially over bony points on my face like around my eyebrow.

Wow, no one had ever done anything like this. After he injected 3 needles into trigger zones, the tn pain began to fade away. After 15 minutes post needle injection - my face felt “NORMAL” and this is a feeling that I had forgotten what it felt like, to be pain free!! Oh my goodness, I was jumping for joy all around the ward!! The nurses thought I was luny!!

The pain clinic specialist Dr Elishae had walked away to chat with his junior doctors, that had been watching plus the ED specialist was also there. Dr Elishae turned to all the staff waiting there and simply said - this patient has Classic TN. ((Geez, like I didn’t know that)) And both he and the ED specialist (Michael) confirmed my need for pain clinic monitoring and assistance!! Oh there is a light!!

I’d begun to lose hope - and as much as I didn’t want that stay in hospital even for one night, it has provided me with exactly what I needed. Someone who understands me and wants to help me. He is organising for me to get an MRA (that is an MRI with angiography (or contrast depending how you look at it) and access to the pain clinic!!

Finally an end to the “Sorry we can’t help you any further” rubbish I constantly heard. For more than 12 years, I’ve struggled with this monster - and I get results because I told the senior doctor in the ED this and cried in front of them all.

Now, because of this complicated story - I am looking at a opportunity to gain some semblance of my life back - have doctors who care and understand! I only wish I had gone there and done this sooner. I didn’t ever consider that option a possibility, and I almost rejected the offer of overnight observation, but by agreeing to it, I’ve opened doors to a future that may never have come if I rejected their offer!

I’m on cloud 9 - now whether that is also an ongoing effect of my continued prescription for Oxycontin or simply the idea that my dark and bleak future may be gone and the tunnel of ligjht and hope has opened and my future is as yet undetermined! Either way, or from both both ways - from meds and from someone opening that door that previously was repetedly shut in my face, is now wide open!

Geez, this oxycontin stuff makes me a bit loony. So I really hope this blog posting of mine is going to make some sense! Excuse me if it doesn’t. The ED specialist says I’ll get used to the meds soon. I just can’t drive in the meantime.

I must stop this now as the screen is getting really blurry - it’s obviously past my bedtime!

With best wishes for great health and opportunities for all here! I hope you all have a wonderful and pain free day!

Cheers ~ Kerry ~ xxx

3

hi kerry,
i read your story with great interest,i hope you continue to keep us informed ,and lets hope you are finally starting to make some progress
take care
love lizx

4

Thank you Liz, Maeve!

I appreciate your positive thoughts!! I am hoping that this seriously is the start of something good! That these doctors will now help me move forward in my care, the way my Neurologist failed to do. Or wasn’t bothered to try.

Maeve, I can only hope that I get this “reset” of the nerve, that sounds like a wonderful thing! I can only wait and hope.

Thanks and Best Wishes for pain free days to both of you!

~ Kerry ~ xx

5

Well, yesterday was another eventful day. I had suffered some severe pain through the night between a 6 & an 8. I was unable to get to sleep. At some point through the night, I dozed off for around a half hour only to wake in good ol grade 10 pain. By now it was 4:30 am. I had made an appointment to see a local GP at 9:30 am and I was not going to be able to wait that long. So, I drove to my now favourite city hospital. Via my Mums house - so she could drive me the rest of the way. I got to her place just before 6 am. Woke her up, so pain and all while Mum got dressed, I made her a cup of tea. Got Mum to just drop me off there, now just after 6 am. There was only one other person waiting as it was so early.

I sat, and waited. Sat, and waited. All the while, the pain was unrelenting agony and I had now waited and watched as the waiting room began to fill. Other people were seen before me, because they were “coughing”. If they were sick like that, the hospital has set up an alternative clinic if people were showing signs of the flu, and it was not in that waiting room. But regardless, people were still queuing in there.

It was 11:10 am before I was called in to see a Doctor. Again, another thorough history was taken even though she recalled seeing me there a week earlier. She only needed to get my file to learn all she needed to know. I told her that to date, that Toradol was the only thing that worked, but they’d stopped giving me that so as to avoid problems with my Kidneys. Dr asked me, have they taken a blood test to check your kidneys? No, I told her, they had not. So, she drew blood and had it tested there at the hospital and an hour later a nurse came to administer me Toradol, then the dr showed up telling me my kidneys were in perfect health. So, that is good to know. She disappeared again this Dr and I sat and waited, now pain free, just sat and waited on a chair in the ED. Watched while people brought in on stretchers by paramedics were allocated either another chair near me, or asked to go wait in the waiting room as this city hospital was now overloaded with ill or injured people and were now overflowing. So, I guess I should consider myself lucky to get any treatment at all. I was not allowed to leave till the dr signed me out as “healthy”. But by now, I’d been inside the hospital for going on 7 hours, I had not been able to eat breakfast - cause of PAIN and also missed lunch as well. Because my dr disappeared. 90 minutes after I last saw my dr, I asked an administrator where she (the dr) was. She went looking, came back and said she couldn’t find her she’d probably had gone to lunch…

So, I sit & wait - - -

In 3 hours after receiving the Toradol - it begins to wear off, I’m still sitting there waiting to see my doctor again. I hadn’t seen her in 3 hours.
3 & 1/2 hours later, she returns and asks me how I am, by now, my head had been nodding in sleep and offers me a prescription and to sign my release. All up I had been waiting in that hospital for 9 1/2 hours!! For 1 measly injection. And a prescription that provided me with more Oxycontin + some Oxycodone!! Yay for the oxycodone. As the Oxycontin is almost useless without the aid of Oxycodone to start it off.

Anyhoo, that was yesterday. I called Mum and she picks me up at 3:30 pm from outside the hospital. I get back to her place, eat a chicken sandwich and fall asleep. I woke up in her spare room at 8:30pm. By now, I have no “actual” pain, but feel like my throat hurts, but it’s not sore. Ear is beginning to hurt also. I do not know if this is me getting the flu or whether the pain is related to my neuralgia somehow… Anyways, I wasn’t hungry so ate a piece of toast and drove home. Mum said I could sleep over, but my Dogs and my Cat had been locked inside my house for the last 16 hours. So I drove home. Who knows this morning whether my neuralgia or a flu were responsible. I have in the past suffered illnesses without outward symptoms as doctors have told me of severe scarring in my throat that had a timeline from when I was not sick with anything. In other words my body may be sick and never show it. The only symptom I may show would be fatigue. And hey, who doesn’t get fatigue - so, too vague!

Yippidy doo daa! I’m ok today. Doing well aside from the sensation that my right ear is having an internal bonfire ~ so I am happy. I can live with an internal bonfire.

Yesterday - was my entire face. All 3 left side plus all 3 right side and pain down my neck and chest. And I felt that agonising out of control pain for more than half a day, well over 13 hours. But that was yesterday. Today, I need to look into ear muffs.

Chat with you all again later, this is my update for today June 11th, 2009 at 11:30 am - Aussie time.

Cheers ~ Kerry xx