Gp stopping my medication 😭

[mand82]

Spoke to my gp on the phone today & his telling me he wants to stop my nortriptyline coz it causes cardiac problems but I’ve been using it for over 4 or 5 years to relax the muscles in my cheeks/jaw I have tmj disorder & without that medication I have pain in both cheeks /jaw I was put on this medication by the hospital as other treatment didn’t work & the medication does it also helps my chronic migraines too & the saying “don’t fix what’s not broke” applys here 😒 it’s not the only thing his trying to change his trying to change my asthma inhaler as well without telling me 😭 , anyone else had this problem?

[GillyGangGong]

Yes me I’m on quite a lot of pain meds one being morphine, it works! he’s saying (they) are trying to get every one off it it apart from palative care, I’m sick of fighting for it. I’m sure it will be down to their budgets. If I was you o would cause a stink, say you better send me back to the specialists who put me on these these meds as I’m gonna be back where I started tell him/her it’s causing you much anxiety if something is working what’s the problem at the end of the day if the tmj med does cause heart problems why the hell did they give it to you in the first place? Will they replace the med with a safer med? I suggest you ask questions fight for proper treatment. Change is very stressful good luck!

[Sazntef]

You really just have to push back. GPs are under massive pressure to get people to decrease and come off certain meds, but not to the cost of the level of care. Make an appointment and discuss the suggestion with your GP. I did this and they agreed to not make changes to my script, asking only that I take less of I feel I'm able to.

If you finally found something that helps, don't give it up without a fight

[Hidden]

With regards to the TMD, perhaps you could push for a new referral to joint specialist. There are other options to medication depending on what is causing the disorder.

On asthma inhalers, it is necessary from time to time to review medication as new and better medications become available. A good GP will review medications to ensure you are being medicated appropriately.

[mand82 in reply to Hidden]

I have my asthma review every year already had one early this year and told my asthma is under control with the medication that I’m on I was put on sertide 250 as the lower dose wasn’t strong enough & was put on Spiriva after my pe in 2014 as my breathing got worse & the combo has helped,

With my tmj I was referred to a hospital in London to see a specialist years ago who tried exercise, night mouth guard but neither helped so they only option they had left was medication and I felt way better after taking it I get no pain at all and can open my mouth a bit more wider then I did before and no lock jaw feeling

[cyberbarn]

This is a problem of the NHS's own making. Opioids were only meant to be taken by end of life patients, not general pain patients, but the opioids were an easy way for GPs to deal with people's pain, rather than actually getting down to the root cause of the pain. Many doctors world wide were lead to believe that these drugs weren't subject to addition which they were.

So now they are trying to right the wrong they did to patients, but from the patients' points of view, the drugs seem to be working so they don't want them to change.

It is tricky, but if he wants you to change, ask for a referral to a pain clinic or back to the consultant. There has been a lot of changes in the management of pain in the last few years, so there might actually be something something better for you now.

[waylay in reply to cyberbarn]

The whole, "Only for end of life pain" thing is bullsh*t. In the US many doctors were prescribing opioids for sprained ankles, etc., and yes, that's ridiculous. However, for many chronic pain patients opioids are a necessary part of life.

Contrary to the opioid "epidemic" hype from the US, chronic pain patients have a much lower chance of developing an opiate addiction than other patients. Most of us don't get "high" from them, as severe pain makes that difficult. We don't think of them as fun - they're medicine; context makes a big difference. Finally, the side-effects of out-of-it-ness, drowsiness, etc. that other people may find fun/pleasant, are seriously NOT fun when you have to deal with them most of the time!

Many of us become physically dependent on opioids if we take them regularly, but dependence is NOT addiction, and is easy to deal with. I just stop taking them for a couple of days. The physical withdrawal isn't bad - more annoying than anything. Addiction refers to an emotional need for the drug, taking it when one doesn't need it medically, taking more than prescribed, and a compulsion to take the drug despite harmful effects (physical, psychological, relational, financial, etc.). I've never craved tramadol, never taken more than prescribed (except accidentally), have been on the same dose for years, and I've never taken it when I didn't need it for pain. Almost all chronic pain patients have the same relationship to opioids. (If they do find that they're getting addicted, then obviously they need to do something about it, however!)

Chronic pain patients in the US are being taken off their opioids without their consent, resulting in agony, much more disability, more isolation, decreased fitness, etc. More than a few have killed themselves because living with that much pain and disability isn't worth it to them. I'd feel the same. Tramadol lets me be more active than I would otherwise be able to be. Without it I'd be bed-bound and in agony for much of the time. Spending *more* of my time stuck in bed, and being unable to do the little things I can do at the moment would make life unlovable for me. The idea of going through a back spasm (several per week, last minutes to 9 days, limit my mobility moderately to totally, and range from 6.5/10 to 9.5/10 pain) without tramadol is daunting, to say the least. The idea of doing it on a regular basis, forever? Not worth it. I'd rather die than experience that level of agony on a regular basis.

Please be more careful with what you say.

[cyberbarn in reply to waylay]

Thank you for your long and well considered post Waylay. I am careful about what I say as I am an academic researcher. My current study is comparing the differences in perception of pain between clinicians and lay people.

[Aevi in reply to waylay]

I have just joined this site and you have covered everything I was going to say perfectly, I am the same as yourself with the way I take my medication.

The specialists can do and give me nothing else other than opiods, however my GP is refusing to listen to me and going to stop my medications, the NHS will not help despite my telling them both they have caused me depression for the first time in my life as they have given me a death sentance forcing me to make plans to end my life, they do not care at all, as they have been instructed not to listen to their patients objections .

I cannot and will not be forced back in 24 hour a day agony which will cause me a long draw out death as it nearly did prior to being put on opiods,so unless I can stop my Doctors in the next weeks ,who have been given the "hand of God " to kill their patients , I will be left with no but to end my life.

Is there anyone else I can get help from quickly such as legally that you know of who can stop them.

The prescription authority are stopping a lot other essential medications to save money also.

[mand82]

I have made appointment with a different gp this Friday to discuss this and hopefully she can sort this 🤞🏻

[Jdanne in reply to mand82]

It doesn’t work they make you feel like a drug addict and look down on you I have been in such a depression for days

[deejames]

I've never had a problem with noritriptyline but was encouraged to look at my opiate use which I did.

Do you have any issues that might be a problem for cardiac side effects ?

Dee

[mand82 in reply to deejames]

I have no problems with nortriptyline or any of my medications that I take

[johnsmith]

Complain to NHS England. They fund the GP's surgery. The GP is in error in suggesting suddenly stopping meditation you have been on for a long time. You need to come of the meditation slowly. If you don't you run the risk of withdrawal side effects.

[mand82 in reply to johnsmith]

My doctor said he wants me to come off it and asked when I last took it which I replied the night before & didn’t sound like he was asking to lower the dose over days till I was off it or stop it straight away just that he wanted to stop the medication, I still have 16 days left of it so hopefully the other doctor can sort it all on Friday & get another prescription of it too if it’s sorted as it’s due soon, last thing I want is to be back in jaw pain again 😞 already in back, leg & neck pain that pregabalin isn’t helping much

[Simbistaffy]

Hi mandi I can say yis at worse go 111 and get there advice

[mand82]

Saw the other doctor yesterday she said every so often they get alerts about drugs that have been found during research etc that get sent to doctors about side effects & medication interaction & recommend to change or stop the medication if needed, but I told her I’ve been on my medication for years & had no problems and don’t want to come off those brands & she put me back on them she did say she would put them back on my repeat but I checked & she hasn’t but I can still order them under recent medication, I’m just glad I can get my nortriptyline & sertide back

[GillyGangGong]

Update: I went to the pain clinic yesterday, she said yes they are trying to get people off morphine based meds people on more than 120mg that is as I’m only on 85/90mg there is no reason to reduce mine this is in the new guidelines if anyone else is having trouble a second opinion is worth it.

[Hidden in reply to GillyGangGong]

An interesting paper: nejm.org/doi/full/10.1056/N...

[Lulububs]

Yes i have same problem.. there trying to cut people of the more expensive drugs or the addictive ones.

Patients that have been on drugs long periods of time they want off as there budgets are not covering it.

Its a shame were all suffering for it though..

I been taken of all mine and told to see a pain clinic? In 8 weeks time.. so i got to go that long with no drugs , 2 slipped discs and a ripped hip flexor!! It great isnt it.

Oh and hold down a full time job

[Hidden in reply to Lulububs]

Have you considered surgical options?

[Lulububs in reply to Hidden]

Well lucky i didnt coz i was a year ago.

I found a great osteo who also does sports massage and a year down line with lots of help. Exercise and yoga and im good as new.

It goes every now and again but i see him and im fine...

Shows why they not so quick to do surgical as some things do get better if u find the right help

[Hidden in reply to Lulububs]

You seemed to indicate that you were on drugs for your pain above.

[Lulububs in reply to Hidden]

Yes i was on alot of drugs a year ago.. that was when that massage was posted...

The dr took me off all the drugs which was hell but i decided to take it into my own hands and found a good osteo and did it all with exercise and yoga..

Im now 80% better.

So when u said about surgery yesterday i wanted people to know that there is hope... the diff in that post a year ago and me today is totally diff and i said no to surgery and so glad i did

[Hidden in reply to Lulububs]

Thanks for that. Removal from your drugs appears to have been a blessing for you.

[Lulububs in reply to Hidden]

Well i was told ami and noritrypylines can lead to heart probs not to mention liver kidney and also become a addiction... so after so long on it they wanted me to come off and try it naturally.

I was having alot of anxiety issues and also a weird swallowing prob where i couldnt swallow prop which i thought was due to anxiety but as soon as i stopped within 2 weeks the anxiety and swallow problem both went?

Since then ive found that is quite a common problem.

My mum who takes ami was on way to work one day she had a funny turn and she had a resting heart beat of 184bpm so they rushed her to hosp...

When they did test she was ok but as soon as she told them she took amitryp they said it was that.. again a common problem it makes ur heart beat irregular.

So there is a reason why doctors do not want people on these drugs long as it just masks the pain but can cause more serious problems..

Also it stops people from doin things that can help them naturally ie yoga,pilates, exercise as they think the tablets are the answer.

[Hidden]

Do you have cardiovascular disease? If so it is contraindicated. As well as that it has a number of reported cardiac side effects.

[Sha2020]

Mandi, I was on This for 20 years. It really does seem to help. The only reason I am not on it now is because my pain specialist changed all my meds. I will tell you that if I took a higher dose it did affect the PVC’s with my heart. I just backed off of it, took a smaller dose and it was fine. My dr. Put me on Nucenta and it seemed to help, but when I went to get it the cost per month was$528. Needless to say I did not get it. I am a retired nurse so I am making my own concoction. I will let you know how it works. Warm regards - Sharon

[Jdanne]

Omg my gp did this too , stopped my steroid inhaler , I changed GP practice and was treated with absolute contempt has really really got me depressed