ER ANGER! ((This is a raving luny rant of a post - and is a long one - Sorry))

Another trip to the ER was required by me tonight, well just got home - it’s 3:30 AM, I left home at 1:30 AM so pretty quick for an ER trip.

My Anger is at this Doctor. I have seen him before. This was the fourth time I’ve met this particular doctor, the only one on call at this rural hospital tonight.

The first time I saw him last year he told me to go home and take Ibuprofen. The second time I saw him, he told me I don’t have TN, the third time he just ignored me because he’d asked if I had had an MRI, I said yes it was done at Logan hospital. He then had told me that I DID NOT have an MRI because if they’d done one for me at Logan it would have been on their hospital records also, and it wasn’t…

This early AM, was the 12th visit there since NYE. Again tonight the pain had gotten that bad I was virtually screaming - so I drove to the hospital, on a lovely foggy humid night, post storm. HE WAS ON DUTY! I could feel the grimace of pain in my face when I saw him. I am always having to explain to him about my condition… He does not like me and I do not like him. Tonight my pain was bilaterally affecting me and within the space of 1 hour before I left home had jumped from a 4 to an 8 out of 10. By 1 am it had reached 10.

He does not believe me when I tell him whats happening and he offered me something called “prodeine” which is just 500g paracetamol + 15 mg codeine. Geez, I’ve got stronger stuff here at home… So I told him no, couldn’t they just give me the Toradol as before - it had been 3 weeks since my last ER visit there and he started bickering with me over dates. I said the 11th of Feb and he said the 12th. On the 12th I had driven to the City hospital ER an hour away at 1 am in the morning because that was where my Neuro appointment was later that morning, so I do know where I was… They don’t share records…

How odd, it’s not like I’m going in there seeking pain drugs all the time, I’m going in to get anti-inflammatory meds, that has no addictive or sedative properties whatsoever! He eventually told the sister to give me 1/3 of a 1 ml dose of toradol! Thanks - like giving me the whole 1 ml dose would have hurt me. Then telling me he’s going to phone my Neurologist tomorrow morning to discuss ME. Read on to hear about the Neuro. That conversation between those two doctors will be damaging to me, I know it now. I have copies of admission documents written up by him previously. The day he’d insisted I did not have TN, and I got angry, he wrote me up as having anxiety issues and that he’d referred me for counselling (by the way, he did not tell me that he wanted me to have counselling.

My Neuro is an idiot. My tegretol doesn’t work any more see, so he’s put me on Lyrica. 9 months after I told him Tegretol wasn’t working. Lyrica has given me edema of my feet, my feet got all swollen up after only 3 weeks, so my new gp changed my med to Gabapentin instead. Gabapentin in Australia is restricted only to Epilepsy patients, so now this may also get my GP into trouble.

My Neurologist had told me that Lyrica & or Gabapentin were my last two choices, that there was nothing else he could do for me, and that I would never be eligible for any surgery due to my being bilateral… So now, I’m going to have this idiot dr at the hospital and my idiot neuro talking about my case behind my back. This is going to stuff things up for me big time. The Neuro wouldn’t issue Gabapentin because it’s restricted, so that left my only choice remaining from him to be Lyrica and look how well that turned out.

Some background, I learnt this year that the anti-inflammatory med called Toradol took away the pain of my attacks. Like all anti-inflammatory you can’t take them consistently for more than 5 days. So, this hospital doctor amazed that I wouldn’t take codeine, refuses to give me an anti-inflammatory because as he says - TN is not caused by inflammation hence there’s no point giving this to me!! What The??? If it’s worked the dozen times before, why wouldn’t it work again? They are worried I MAY get a stomach ulcer. God help me, I’d rather the stomach ulcer.

heck, I’m tired it’s after 4 am - I’m sweating profusely, stirred up, angry, in pain and I just know, that when all is said and done and I let this anger go - I am simply going to give up. I’m tired of having to fight every doctor I meet, I’m tired of hearing I can’t help you, I’m tired of being in pain. I would like to think that if it’s that bad I’ve driven myself to the hospital on a rainy, foggy night at 2 in the morning after having taken all my pills hours before with no affect and now in agony and tears - that I once again have to fight to be heard.

My Mother was at my Last Neuro appointment with me, where she heard him tell me there wasn’t anything else he could do - sacrificing me to remain in my life in pain, to be discounted at every turn, to be smiled at as he gave me a “commiserating” pat on the shoulder as he escorts us out the consulting room door. This is not good enough.

Signing off for now. Hoping everyone else is doing better than I feel right now ~ Kerry (ko) …

PS: Thanks for hearing me out.

Hi Kerry.
I am so sorry you are having such difficulty with doctors. I don’t know how I could manage if, on top of all the pain, my docs didn’t believe me or treated me like an idiot.

I hope you have been able to get a bit of sleep since arriving back home. And wish you the best of luck with your Neuro tomorrow. It would be productive (for you) if your Neuro could set the ER doc straight as to your problem. You need SOMEONE in the medical profession to advocate for you to this guy if you have to keep going in to that ER. And it doesn’t sound like you have many choices for emerg care so you’re going to run into him again and again.

Sending soft hugs.

I am so sorry Kerry. I can’t even imagine the doctors not believing you have this pain. I hope you are feeling better. I couldn’t take Lyrica either - feet swelled. And my neuro gave me prednisone with the thought that the nerve may be inflamed. I hope you are able to talk tomorrow night. I’m thinking about you. I wished there was something I could do. I am thinking about you. Liz K.

Thank you to all who replied. Your support means a great deal to me! I’m sorry for the length of this post - I hope it makes sense as I’m rather strongly medicated right now :wink:

I’m now taking: Tegretol 400mg, Gabapentin 900mg, Baclofen 10mg, Xanax 1mg & Endep 25mg. I’ve been reducing my Tegretol - had been on up to 1200mg at one point, couldn’t handle the side effects and had reduced it to 800mg and have still been titrating Teg down, but will increase it back to 600mg I think (I take 200mg controlled release Tegretol tablets spread out over the day). I’ve also had 2 Toradol injections today… And recently took 2 panadeine fortes that make me ill. And I don’t feel too well right now…

I got to the GP’s office earlier this morning and he was happy to administer the toradol inj for me. This lasted well into the afternoon, I caught up on some sleep and when I woke the pain was beginning again. By 5:30pm it had returned severely enough to warrant another trip to the hospital. The pain had gotten to a 10 after a phone call with my Mum. I was having trouble talking as well by this point and again my Mother raised the idea of wanting me to move closer to her home on the Gold Coast (a city that’s not a city) I don’t want to have to do this - I love my lifestyle here and have no desire to give it up. This time I phoned through to the hospital first to see if the Dr I detest was on duty. He wasn’t, so I drove out there just after 6pm.

They gave me Toradol and I was told the Dr wanted to see me. It was a busy night for a small rural hospital. And I had to wait a considerable while to see him, but as it turned out, he is the Medical Superintendent. He spent 40 minutes talking with me about my illness and seemed very knowledgeable. After all is said and done - his idea of a more permanent “fix” for my problem was to destroy the nerve. He wasn’t specific as to how or what his recommendation of damaging the nerve was exactly - he was not a Neurologist or Neurosurgeon - but he was great to talk to.

I actually after the days I’ve had recently, appreciated his taking that time out of working in the ER to take me aside for such a long time, and calmly talk with me, ask me questions and learn about my specific TN issues. He had a medical student with him and I was glad for the student to get such a calm and as I thought - wise teacher. One who referred to his learning and refreshing himself on new updates in Neuropathic medicines. He calmed me down too. I asked him about certain aspects of my TN that didn’t seem ordinary, he acknowledged what I said - and he said yes, that seemed different - and I said could you please tell me it’s not TN, that it’s something else that has a “fix”, he said unfortunately not - every single symptom I described fit in with TN. The way this was done - was polite and sympathetically.

This Med Superintendent has also read “Striking Back” and politely inquired as to whether I had also read it. I was impressed as he’s the first Doctor I have ever met since diagnosis to have read this book.

Anyways, I got home just over 2 hours ago. Now 4 hours since my Toradol injection and the pain is returning. It has gone from an initial 2 to a 7 in a half hour span. I should have gone to sleep when I got home, except it was too early still. It was only 9 pm which is for me what I consider too early. Guess I was wrong and should’ve gone to sleep. I won’t be able to get another Toradol shot until 8 hours after the other one. In less than 24 hours, I’ve now had 2 & 1/3 injections of this anti-inflammatory. If I’d been able to go home just after tonights injection I would have enjoyed almost 4 hours pain free in my own home.

But wait, it’s dulling again. Oh, it’s coming and going. I took my meds a little while ago, and I think combining my Endep with some panadeine forte may not be a great idea but it’s making me very groggy.

I need to try and get to sleep before this attack resumes. The codeine in the panadeine forte makes me feel physically sick, but I just had to try and stay up a little longer. K9 Agility is one of my life loves and a friend just emailed me the link for the Crufts show, where it can be watched live on TV from England - and I had to try and stay awake long enough to watch a little of it.

But now I’m getting some referred pain in my shoulder. I will try and get some sleep. Tonight, I’m not making much sense to myself - I’m a bit drugged up on my meds now, so good night / good morning to all - I’ll post again when I can. Time to sleep.

Cheers ~ Kerry xx

Thank you Ro ~ very much appreciated ~ this will give me more knowledge, and send me more well armed into the fray :slight_smile:

Cheers ~ Ko