I've been dealing with TN for over a year now. I get prescribed 120 10/325mg Hydrocodone per month for pain. It worked pretty well when I first got prescribed it, but I'm fairly certain I have built up a tolerance to it by now. My doctors won't prescribe me anything else. I'm at the end of my rope. I understand why they call this "The Suicide Disease". People get no relief and resort to extreme measures.
My pain has been at an 8-9 for the last two days. I called my GP this morning who told me to call my Neurologist who said try a Medrol steroid pack (which didn't work last time it was given to me) or go to the ER. I wasn't asking for a billion pills. Just something for right NOW for the above 7 pain.
I'm tired of being treated like some pill-seeking addict. Every time... EVERY TIME they come up with these excuses like "Narcotics wont work on your pain" or "You'll end up with even worse rebound pain". I do NOT want surgery and I don't have flare-ups of this magnitude enough to constitute dealing with the side-effects of Lyrica or Carbamazepine.
TN is one of the most painful disorders known to man. I sure as heck wish they would realize this and treat me accordingly. I'm so stressed out from dealing with this that it's making this stupid effing flare-up even worse. I JUST WANT SOME PAIN RELIEF DAMNIT. I can't even cry because it makes this stupid crap worse. I'm 27. I want to be able to live my life like a semi-normal person and not get looked at like I'm some drug-crazed addict weirdo.
I just don't know what to do anymore. Turning to the only people in the world who know exactly what I'm going through. Please help :( I'm literally going crazy from the pain/rage I'm feeling right now.
(PS: My GP's wife has TN, too. I don't feel like I'm getting an unbiased opinion from him, and my neuro just agrees with everything my GP says.)
I do so want to help you, if only I could. I do believe that Red says if you go to the ER they have a duty of care to treat members of the public who are in deep pain. Do forgive me I am British and it is hard to know the system of care in the US. I hope someone has a good solution for you. I shall be thinking of you and hoping for some relief for you soon.
Thanks so much for the kind words, Jackie. Unfortunately, I can not afford an ER visit. Even with my insurance, it'll cost me $100 minimum. I simply do not have the funds right now (unemployed because of my TN). On top of that, the ER's around here are VERY strict about handing out pain relievers. Most of them will make you pee in a cup before they do anything. I would fail a pee test as I smoke medical marijuana (my lifesaver to an extent. better than the vicodin). Unfortunately for me, and a lot of other patients, my state is caught up in politics getting our compassionate care centers set up... so there is no legal alternative for me to get my herbs at the moment.
I hear so many stories from people who say narcotics DO work for their pain. My doctor consistently tells me that narcotics do NOT work on this type of pain. I have to disagree with him here, as a friend gave me IV Morphine during my last week-long flare-up. It brought my pain down from an 8 to a 3-4. I would call that significant pain relief!! I was able to eat something solid for the first time in days! AND I GOT SOME SLEEP!
I feel kind of defeated today. The neurologist called in a mess of steroids that I'm supposed to take. 42 of them over the next six days. I'll be irritable, very aggressive, and HUNGRY ALL THE TIME. I don't like steroids much. They didn't work the first time I had a flare-up, I'm not sure what makes them think it will work this time.
I know what you mean, my GP wouldn't prescribe me more than acetaminophen this week. He harps on about how addictive things are and how really only cancer patients should get narcotics. I had a repeat prescription left at the drug store on the oxycodone so I got that. I have had to use codeine that my mother in law who felt sorry for me gave me that was in her cupboard that she never used. This makes me feel really bad as they weren't prescribed for me but they dull the background pain and they work REALLY well with the oxycodone when the pain is really bad. I explained to him that codeine works well to no avail (and yet when he prescribed me the oxycodone in the past he suggested codeine as it's not as strong) *sigh* I really need to find a new GP. Considering I work in healthcare and all my colleagues have realised just how awful TN is and they are all sympathetic and yet my GP is like that! Steroids will make you as hungry as a horse and if you have too much you can end up cushingoid where your face balloons up ... it affects so many of your body systems. I don't think steroids would work well either!
I am so sorry and I wish I could help you. I used to take Clonazepam which was very effective in giving me relief, but it was taken down simply because it is associate with drug abuse. Too much steroid can end up with a ‘balloon’ face (the cheek puffs up like a puffer fish) and also rashes. Sometimes, the doctors treated us like some hard core drug addicts . Please hang on, you are not alone , we understand your frustration !
Your experience is another example of the miserable health care system in the United States for many people.. I think we need to develop a Living with TN packet so that one can present it to the unknowing. There are several recent postings on our site toutling our problems in dealing with pain management and the medical world. I also want to throw out the idea of mass emailing to ignorant physicians regarding pain control. Informative action such as this may violate our site boundaries but something has to be done about insufficient pain management by physicians. There is enough info on our site so that each one of us can create our own packet. Enter the doctors office fully prepared to educate them
I'm sure someone will come up with the mentioned recent postings. They are on the mark and should accompany any visit to the medical world and to all of those in our lives.
i sympathize so much with many of your sentences.... yes. it's one on the most painful diseases.. with doctors know that more. i also want my life back . it's been enough !
not as you - i tried as much NOT to take meds.. (not painkillers and not nerologial drugs). but i did take a LOT of painkillers in these two years.
my doctoes here are the opposite - they do almosy BEG me to try "hard" meds and painkillers..they prescribed me methdon...i refused to take.
i have to adviced for you -
one - when the pain is severe - there MUST be at least one kind of OTC painkiller you can take.. even double dose (if it's legit of course) .. like taking 2 ibroprofen at a time.. i know it can at least a bit ease the pain..
second advice - find SOON another doctor that understand. you can't go through this without a doctos that understand. if one doctor is a jerk... there are many others that can DO thier job and try to HELP the person suffering.
it's so hard to hear you suffer...i so much understand.. and many here are.
hang on. .take what ever (safe) pill that can ease your pain for now.
I am new to this site. Unfortunately not to the pain. I live in Canada and the system is the same here. I was treated like a drug addict by a Neurologist who said I had "Stress" before I was diagnosed with bilateral ATN. Unreal! I have had to give up my job due to the pain (I had a physically demanding job- the pain would make me sick to my stomach and feel dizzy going up and down ladders) and now I am learning how to deal with a 7 all the time. I don't take any of the drugs I have been given unless it's a bed-bound day and I feel like smashing my head against the wall. When I went to the hospital for pain management they gave me something called Dialutta (sp?) has anyone else been on it? Its a drug they give terminally ill cancer patients when they are dying. It only brought my pain from 9-10 (screaming and crying) to my normal 7 ish? I'm so sorry to hear that everyone is suffering with this, at least we are not alone even though at times it feels like we are! I hope everyone finds some relief sooner than later! Hang in there!
I feel bad about my suggestion now, as I am from the UK I had no idea just how expensive it would be to visit the ER and of course I DO know $100 is a lot of money even if we have a job. I was only trying to help and it was no help! Even so, I want you to know I feel bad you are in so much pain and having this battle to gain relief which I hope you will find soon. SpaceBunny said:
Thanks so much for the kind words, Jackie. Unfortunately, I can not afford an ER visit. Even with my insurance, it'll cost me $100 minimum. I simply do not have the funds right now (unemployed because of my TN). On top of that, the ER's around here are VERY strict about handing out pain relievers. Most of them will make you pee in a cup before they do anything. I would fail a pee test as I smoke medical marijuana (my lifesaver to an extent. better than the vicodin). Unfortunately for me, and a lot of other patients, my state is caught up in politics getting our compassionate care centers set up... so there is no legal alternative for me to get my herbs at the moment.
I hear so many stories from people who say narcotics DO work for their pain. My doctor consistently tells me that narcotics do NOT work on this type of pain. I have to disagree with him here, as a friend gave me IV Morphine during my last week-long flare-up. It brought my pain down from an 8 to a 3-4. I would call that significant pain relief!! I was able to eat something solid for the first time in days! AND I GOT SOME SLEEP!
I feel kind of defeated today. The neurologist called in a mess of steroids that I'm supposed to take. 42 of them over the next six days. I'll be irritable, very aggressive, and HUNGRY ALL THE TIME. I don't like steroids much. They didn't work the first time I had a flare-up, I'm not sure what makes them think it will work this time.
Ask your GP to send you to a pain specialist they may have better ideas for the pain. I too can't wait for the Canadian summer to arrive so I can see outside once again. Being held prisoner is not fun but helps keep the pain at about a 6 so I simply feel battered or sunburnt. I am looking into the thc pill my pain specialist suggested, it is too expensive as I lost both my jobs when I was suddenly struck with this hell. I do know that the non pill method helps being against it most my life I have quickly turned around. I simply wait until late at night it helps me sleep again and the pain seems to die down as long as I have something to zone out on, like watching TV.
I think a lot of countries have a lot to learn when it comes to medical marijuana. If only people could see that in chronic pain it does actually work. Coming from a country where any form is illegal (class C drug) and yet quite a bit of the population seem to have at least tried it recreationally I'm in the legalise all forms camp (here a lot of police time is spent chasing people with dope that can be spent on more important things like violent crime). I guess there's always a slippery-slope argument that people will abuse it etc but I think if you have a proven chronic pain condition then sure (and arguing that it will be on-sold to drug abusers etc, well you can argue that for a lot of drugs that are legally prescribed every day such as narcotics, ritalin etc). I personally couldn't use it as I could lose my career as a nurse, but it seems to really suck if it could be a good option for people and it's denied because of legislation.
A short note on the $100 Emergency Room cost. In most hospitals, the $100 just gets you in the door. Blood tests, x-rays and what ever else will send your final bill zooming way beyond the $100. A sad state of affairs. Each UK member should adopt one of us. Gee, maybe health care would have been better here ,if we had lost the revolution
Bill, we do not know we are born here, I admit that. We do pay a fortune in taxes but I think its worth it. I had a small non TN related op on Tuesday. I was home the same day. I had it in the best unit in the country. I was treated so kindly. The unit is where the Princes Charles and William had their hand injuries repaired. They apologized when the gave me tea and biscuits that the selection was small. I told them I was privileged to have the surgery, the tea and bics were a luxury I felt unnecessary but nice! The bill? Well, there was no bill, Bill!
Everyone move here then :D The UK have horrible taxes if you earn really good money (up to 60%!), here if you are over a good rate it gets capped at 33%. Your council taxes are around the same as our rates if you count it as earning a pound like we do a dollar. We have free health care for residents and citizens and prescription drugs are subsidised, yippee :)
Sounds wonderful. We nearly did emigrate years ago, I also lived in Oz for a few years. Just for the record, I don't have to pay the top rate of tax, or anywhere near it! LOL
you all sound like me. i had to fight for my meds and somtimes they need to be stronger. but i went to the er went to my gp went to nero who told me i was to young to have this because i was 28 at the time which made me find another doc that would listen now i have moved and need to find a new doc again was able to get some scripts for the time being good luck in your search
I also get relief from the pain with Codeine but most people do not everyone is different I am Ok during the day but the nightime pain is helped with pain killers. Opioids of any kind are extremely hard to get and even if you go to the ER you probably will not get any. The gov't has made the punishment for providers so strict that many of us that are helped by them are left in pain. Some are turning to heroin and the new heroin is 15 times stronger and without direction of how to use it many people are overdosing. Hope you find some relief