Just asking...and just curious. I have not had the pleasure of going to the ER during an attack, although I should have at least twice now..when the pain gets too much to handle...
Better yet, does anyone have any "Plan B" set up with their neurologist to go to their hospital for treatment? If so, what does he do for you?
Thanks, Julie
I think I should have gone at least 20 times but I am afraid they will make it worse, because I a teaching my doctors how to treat me. But the book "Striking Back" has a great section on what to do. It even suggests that you get a letter from your GP on how you should be treated. My GP and I are working on that. He is not sure how to put it together yet, but in the mean time take an advocate that will know what works for you and what does not. I just do not even go to the doctor without mine. I have been abused too many times at the doctors office.
Tree69
Wow Tree69 (interesting name btw)
I'm interested in this book. Very. I know exactly what you are talking about taking an advocate with you. I just fired my rheumatologist after a horrid experience dealing with him and my treatment. And I'm double whammied with lupus and tn, both conditions with varied treatments specific to my personal care (what works for me)
I don't go to the ER for the fear that they'll do nothing and it's really difficult to have to go and sit in an ER during an attack. I can't even imagine. I started getting horrid headaches that put me in fetal position, this is not from TN as far as I know...after the last one the left side of my face went numb. I still did not go to the ER.
I refuse to go unless it's for sure a stroke or extremely serious symptoms WITHOUT A PLAN in place from MY doctors so that I can be admitted, not wait in the ER and be treated in a humane and helpful way.
I'm really really interested in what that should be and how to do it so I can get started on one. It's a great subject I would like to bring up with my neurologist.
For example if my bp is blank and I'm experiencing blank then it is time to go to the ER....and so on...and then when I do blank will be called and I will be admitted ...and so on....
Thanks for the great ideas! Love Julie
I guess I've been fortunate. The flare up I had in December I was treated with IV narcotics (I think Dilantin?) and the pain stopped. Was only in for 2 hours and my neurologist (has practice in same hospital) stopped by to see me. He gave me hydrocodone pills for flare ups and said if that didn't work, I should come into ER for IV. I will not hesitate to go to ER again, but the cost was $800, my deductible thank God was met for the year by then.
So you went to the ER, told them your neurologist works out of that hospital and they treated you with narcotics and while there your neurologist came in? Did they need to call your neurologist first? Did they know what TN was and how to treat you? Are you on other meds for it?
Thanks, Julie
I told them I had TN, was on Lyrica for it and that my neurologist was associated with that hospital. I had called my neurologist before I went to ER, and he said to go to ER immediately. He is a peach and took time out of his office hours to come down to the ER and see me after the IV started. Whether he had already contacted ER before I got there, I do not know. The ER doctor was familiar with TN and my neurologist....the benefit of a smallish community!
Since that ER visit my Lyrica was upped to 100 mg three times a day from 100 mg twice a day and he added oxycarbazepine, I ended up taking 450 mg at night before bed because it made me so loopy, unbalanced and sleepy so I couldn't tolerate it during the day.
I see my neurologist for my routine 6 month checkup next week, in fact in December I had my ER visit a week before I was to see him for my checkup. I now have pain back after 6 months with none, so it is likely time to tweak my meds to avoid another ER visit. I have a long history with my current neurologist as a few years back I developed tremors and was evaluated for Parkinson's. Turned out to be essential/familial tremor and no Parkinson's, thank God! Had a little brain surgery for Chiari malformation and had debilitating headaches before Lyrica. Love those brain guys, in fact my neurosurgeon would dearly love to crack my head open again, but I am way too hesitant for MVD, or even gamma knife.
jujubeee said:
So you went to the ER, told them your neurologist works out of that hospital and they treated you with narcotics and while there your neurologist came in? Did they need to call your neurologist first? Did they know what TN was and how to treat you? Are you on other meds for it?
Thanks, Julie
One and only TN ER resulted in Benedryl/ Dillaudid mix that only lasted 3-4 hours
That was my first attack - so I didn't even know what I had.
The pain pill Tramadol works for many - but it is not a narcotic -- run don't walk to get that book!
the best price is on amazon for striking back.
Yes please all read the book. Fabulous information!!!
There's an "Attending Physician Advisory Form" that Red has at http://www.lawhern.org/AttendingPhysicianAdvisory.doc
As soon as I get my official diagnosis, medicine, doctors, etc. I'm going to print this letter and keep copies at my home, work car, etc. :)
For more info, you can read: http://www.livingwithtn.org/page/reserved-tab-a
I've never gone to the ER either (although those around me were telling me to go!), but I think the Plan B is awesome and also I can't wait to read Striking Back--in fact the library notified me that it just came in today :)
Oh great idea - the library. I'm going to check online if mine has a copy. I can't wait to read this other stuff you put up. Thanks so much Jessica!
This is a great subject! I asked on a TN FB Group and got answers all over the board from I was sent home without so much as a tylenol to I was admitted for a week.
Yikes
If your library doesn't have the book in stock, they should be able to borrow it from a library in another city. That's what mine had to do :)
jujubeee said:
Oh great idea - the library. I'm going to check online if mine has a copy. I can't wait to read this other stuff you put up. Thanks so much Jessica!
This is a great subject! I asked on a TN FB Group and got answers all over the board from I was sent home without so much as a tylenol to I was admitted for a week.
Yikes
The ER doesn't do anything. Been there a few times-waste of time!!
jujubeee said:
Wow Tree69 (interesting name btw)
I'm interested in this book. Very. I know exactly what you are talking about taking an advocate with you. I just fired my rheumatologist after a horrid experience dealing with him and my treatment. And I'm double whammied with lupus and tn, both conditions with varied treatments specific to my personal care (what works for me)
I don't go to the ER for the fear that they'll do nothing and it's really difficult to have to go and sit in an ER during an attack. I can't even imagine. I started getting horrid headaches that put me in fetal position, this is not from TN as far as I know...after the last one the left side of my face went numb. I still did not go to the ER.
I refuse to go unless it's for sure a stroke or extremely serious symptoms WITHOUT A PLAN in place from MY doctors so that I can be admitted, not wait in the ER and be treated in a humane and helpful way.
I'm really really interested in what that should be and how to do it so I can get started on one. It's a great subject I would like to bring up with my neurologist.
For example if my bp is blank and I'm experiencing blank then it is time to go to the ER....and so on...and then when I do blank will be called and I will be admitted ...and so on....Thanks for the great ideas! Love Julie
Mgln, (for lack of a better name)
THAT is exactly what I'm afraid of. When you've dealt with incompetent physicians who treat pain patients like criminals looking for their next fix, it is INDEED a huge waste of time! And that is exactly why I want a protocol with my neurologist, so that IF I ever have to go to the hospital, that I can say something like: "Dr. Reynolds says to treat me with 100mg morphine as needed, a shot of diluadid and 200mg of IV prednisone and to call him at 222-■■■■■■■■. This way I'm assured decent treatment.
Besides, if anyone going to the ER is already a pain patient and being treated by a pain mgmt doc with a contract, the ER can and will refuse you treatment. In AZ where I live we have a nationwide database of all controlled substance prescriptions and all the hospitals, doctors and clinics have access to this. And use it. So it's imperative that we have something in place, even a signed note from PM that you can be treated for pain at the hospital with IV drugs for pain.
It's ashame that it has come to this, the doctor patient relationship is ruined thatnks to the stigma that comes with opiods.
HUGS, Love Julie
Hello I have been in the ER 6 times now and it is a routine when i go in. They usually give me a dilauted shot and wait for the pain to stop if it doesen't then they will give another shot and this goes on until the pain stops. I have found that you need to be ferm in asking/Telling a doctor or RN what you need. I have been given norco and valium when it flares and the ER is my plan B
They told me I had an ear infection, gave me a shot of anti-biotics and sinus meds then sent me home. You really have to educate not only doctors but dentists as well. It's sucks but you will be your biggest advocate in the healthcare system.
I have gone 2x and they couldn't do anything for me. No pain meds worked.
I saw a letter from a doctor telling ER docs how to administer dilantin, the mgs and time yesterday. I can’t find it now. Does anyone know where it is?
Hi I learned from this site to let ER know your having a pain crisis from TN. I pray they listen.
Good Luck to you
My Best
Joanne
Been to the ER twice I should have been more times but I’m stubborn what can I say all they did for me was give me a shot of morphine and pills in morphine that barley help it’s pointless going now just need to stuffer though the pain.