Hello to everyone,
I was hopeing that someone with knowledge of the type of drugs given for suspected PN could help me with this mystery.....to begin with it might be helpful to mention that throughout this 3yr suspected Pudendal nerve problem I have experienced quite a few drug changes. Now for someone who didn't even take an asprin for anything, we suddenly realized we had a carrier bag full of drugs that had been given to me on each visit to a new specialist or consultant.
Eventually neither my partner and I had any idea what was to be taken, when and why.
We took the bag with the drug content to my gp and carefully poured them onto his desk, we simply asked if he knew what they were for.....he was a bit agast and addmitted he didn't.....He sorted through and came up with a few he told me to stick with.
I have been from day one of this pain fentanly. Tramodol was given and caused nightmares and hallucinations, nsaids burned my stomach.
I was also given amytryptline taken at night 50 mg.
Just recently I was given garbepentin but that was unsuitable, more recent prescribed Lyrica pregablin The amount rose to 150mg x 3 which amounted to 450mg each day, I suffered night sweats to the very worse absolutely soaked sheets and pillows...had swelling in knees ankles and hands....I was told to stop taking them...I always thought it was unadvisable to just stop taking a drug.I was then put on cymbalta/duloxatin 30mg and still taking amytriptlyne.
Since not taking the lyrica I have hade a considerable drop in evergy and incentive to do anything..and there is always a lot to do. Could not taking lyrica leave me like this? ALSO ALL THE NERVES IN MY BODY JUMP, an mri had to be redone because of the movement .this only happens when I lie flat.Why has my energy level dropped so dramatically some help would be apprecciated
Thank you
medication
Re: medication
Hi little mo, me again I am afraid! I know what you mean about lots of drugs, we have all of ours (mine and my husband's) in one of the kitchen drawers. There are lots. My daugher opened it the other day by mistake, and said, wow there is half the chemist shop in here!
So you've stopped taking the Lyrica - not tapered - and you have lost all energy, and all your nerves are jumping. Yes, I would say that this is due to stopping Lyrica suddenly. Have you only just stopped taking it?
I think that you should ring NHS Direct and talk with someone there. The number is 0845 464748. Make a list of all the medication (and the doses) that you are taking at the moment, they will want to know.
So you've stopped taking the Lyrica - not tapered - and you have lost all energy, and all your nerves are jumping. Yes, I would say that this is due to stopping Lyrica suddenly. Have you only just stopped taking it?
I think that you should ring NHS Direct and talk with someone there. The number is 0845 464748. Make a list of all the medication (and the doses) that you are taking at the moment, they will want to know.
-
spikehades
- Posts: 18
- Joined: Fri Dec 10, 2010 4:49 pm
Re: medication
hope you are well. You need to start researching the drugs and treatment yourself otherwise you'll just end up lost in a quagmire of latin and crypto-babble.
Keep a list of your meds, strengths and formulation types. then go and do some online research, wikipedia is good for drugs. Learn about your anatomy - the medical terminology included. arm yourself and be your own advocate. get to a stage were you can have a conversation with your doctor on his/her terms; they will then be forced to take you seriously.
Unfortunately you just can't rely on the medical system alone, you need to take control of your fate.
Please, I'm not being patronizing or arrogant, I you've been through a lot and deserve better.
Keep a list of your meds, strengths and formulation types. then go and do some online research, wikipedia is good for drugs. Learn about your anatomy - the medical terminology included. arm yourself and be your own advocate. get to a stage were you can have a conversation with your doctor on his/her terms; they will then be forced to take you seriously.
Unfortunately you just can't rely on the medical system alone, you need to take control of your fate.
Please, I'm not being patronizing or arrogant, I you've been through a lot and deserve better.
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: medication
The other problem is that everyone is different. People can react in a different way to even different doses of a drug.
First of all I would do as spikehades suggests and look them up individually on the internet or as Calluna suggested ring nhs direct.
Those that you haven't taken for a while that don't seem applicable to your current situation, take them to your local pharmacist (a friendly local pharmacist could also possible help you with deciding what's what)
You already know some of those drugs don't suit you so take them along too and get rid. As for the Lyrica, maybe the dose was too high for you in the end.
Its all pain relief verses side effects and a bit of controlled 'experimentation' is often needed to get the best ratio.
Stopping the lyrica may have given you some fatigue withdrawl symptoms. Personally I would take a smaller dose and see if it helps at all. If not then wean yourself off a little more slowly to negate the side effects somewhat. You may discover that a lower dose of lyrica works for you .
I was in a similar situation with gabapentin and took 2 months in all to get it out of my system gradually.
The thing to remember is the balance or ratio of the quantity of drug verses the side effects verses the pain relief. Just because a drug is having a good or some good effect doesn't mean that taking twice as much will give double the amount of relief.
Dr Greenslade did recommend Cymbalta for me but also added that for nerve pain relief this drug could be effective at the lower dose of 50mg but did not tend to be any more effective for nerve pain on any higher dose. I would imagine that if it was taken for depression (it's ususal prescriptive use)it would be.
He also suggested that I try Lyrica. His words were ' starting off at 75mgs and gradually increasing to 75 mgs twice daily. up to 300mgs twice daily', but added, and this is the important bit, 'whatever LOWER dose gives her useful pain relief ,'
It's all experimentation little mo. But that experimentation needs to be done in a controlled way.
Take care,
Helen
First of all I would do as spikehades suggests and look them up individually on the internet or as Calluna suggested ring nhs direct.
Those that you haven't taken for a while that don't seem applicable to your current situation, take them to your local pharmacist (a friendly local pharmacist could also possible help you with deciding what's what)
You already know some of those drugs don't suit you so take them along too and get rid. As for the Lyrica, maybe the dose was too high for you in the end.
Its all pain relief verses side effects and a bit of controlled 'experimentation' is often needed to get the best ratio.
Stopping the lyrica may have given you some fatigue withdrawl symptoms. Personally I would take a smaller dose and see if it helps at all. If not then wean yourself off a little more slowly to negate the side effects somewhat. You may discover that a lower dose of lyrica works for you .
I was in a similar situation with gabapentin and took 2 months in all to get it out of my system gradually.
The thing to remember is the balance or ratio of the quantity of drug verses the side effects verses the pain relief. Just because a drug is having a good or some good effect doesn't mean that taking twice as much will give double the amount of relief.
Dr Greenslade did recommend Cymbalta for me but also added that for nerve pain relief this drug could be effective at the lower dose of 50mg but did not tend to be any more effective for nerve pain on any higher dose. I would imagine that if it was taken for depression (it's ususal prescriptive use)it would be.
He also suggested that I try Lyrica. His words were ' starting off at 75mgs and gradually increasing to 75 mgs twice daily. up to 300mgs twice daily', but added, and this is the important bit, 'whatever LOWER dose gives her useful pain relief ,'
It's all experimentation little mo. But that experimentation needs to be done in a controlled way.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: medication
thanks to all ...you really know your stuff and without you I would be lost. I have had little trust in gps for a few years now. The trust has fallen a little bit more now after a chat with a pharmacist who asked what pain releif was I getting now in terms of medication, saying cymbalta he shook his head and said one cannot go from lyrica to cymbalta whilst taking amytriptline. So What is my NEW gp thinking ?.I find it scary that my life is in their hands..and sad.
Thanks again as we took your notes on board and added them together.
love from little mo xx
Thanks again as we took your notes on board and added them together.
love from little mo xx
Re: medication
Hi everyone, im from Australia and have chronic pelvic pain for over 3yrs. It became worse after i had urethral dilutation for frequency and bladder fullness pain. I have had every test available and now have vaginal pain as well as lower pelvic and bladder pain. I had a lap last year and was discovered i had intensive adhesions stuck to every organ bowel to bowel ovaries couldn't be seen it was that bad. Long story short, saw pain specialist and he thinks in visceral pain, but he said some chronic pain can never be diagnosed. I think i had some nerve damage during my urethral procedure and adhesions may not be helping. I can no longer work and have just finished cancer treatment, but pelvic pain is not related. Im on15mg Amitrip as i cant tolerate strong pain meds, specialist said i can go up to 20mg as i cant walk, stand for more than 30min and sitting makes vaginal pain worse. Laying down with a heat pack brings some relief. Im worried about going up to 20mg of amitrip as i already have constipation issues at 15mg and have to take daily laxatives. Also the drug info says weight gain, which would only put more pressure on my pelvis. Is anyone amitrip and what dose and side effects? Also how long does each does increase take to kick in.
Thanks for any info
lynette
Thanks for any info
lynette
Re: medication
Hello Lynette
this is the first chance I have had to welcome anyone..I was thinking the other day I don't seem to have contributed much here ...just keeping on asking for advice so maybe this is an opportunity for me to put somethings into balance
Lynette please let me say How sorry I am you are in this worrying dibilitating condition...to the outside world pelvic pain is just well another pain!!! we know different and how it affects every part of our lives ...oh gosh I could go on and on with the suffering of the sufferer. Even how it affects our mental thinking.
I hope you won't mind me suggesting something Lynette, it is for your benefit and you would get a larger audience, and in a mo I will talk amytriptlyne.
Lynette sweetie, you are probably being passed by, the reason is that anyone looking on the boards would know that I have had a lot of advice and probably nothing new to give...I had thought you answered my post and decided to have a look in case someone had thought of something new ...so lets make a plan.....You will see a box that says NEW TOPIC ...this is where you start...then think of an eye catching headline example....LAPAROSCOPY REVEALED THIS....
or COULD THIS BE PN???? or Please help me I am new here... So that bit's up to you right? this is your post then and answers to you will be posted under that headline.....sorry if I sound a bit bossy ..once a teacher always a teacher!!!Stay IN the Uk bit IF THAT APPLYS TO YOU...... it does mean you will have to print that out again though....have a think about what your main concern is...to me it comes across as amytriptlyn although poor you you have a lot of other things going on....BUT you have come to the right place and you will get some good sound advice...not from docs but people who are or have been in your situation...Right , amytrip... I take 75 mg each night...along with a hoard of other stuff but that would be boring to go over again at this point...This drug (it has been discovered ) was originally for depression but in a much larger dose. I n the small dosage it helps with nerve endings...I think, and someone please put me right if I'm wrong, that the dosage needs to increase from time to time as you can imagine the body gets used to certain amounts and it has no value....I have always encouraged people new to this drug to take it early evening between 6.30pm to 7.3opm the latest...it will help with sleep if nothing else....Lynette I can't help or advice on anything else but there is some one out there who can but start with YOUR POST ...I wish you luck my darling and the certainty of getting the answers you need good luck
love from mo xxx Sue
this is the first chance I have had to welcome anyone..I was thinking the other day I don't seem to have contributed much here ...just keeping on asking for advice so maybe this is an opportunity for me to put somethings into balance
Lynette please let me say How sorry I am you are in this worrying dibilitating condition...to the outside world pelvic pain is just well another pain!!! we know different and how it affects every part of our lives ...oh gosh I could go on and on with the suffering of the sufferer. Even how it affects our mental thinking.
I hope you won't mind me suggesting something Lynette, it is for your benefit and you would get a larger audience, and in a mo I will talk amytriptlyne.
Lynette sweetie, you are probably being passed by, the reason is that anyone looking on the boards would know that I have had a lot of advice and probably nothing new to give...I had thought you answered my post and decided to have a look in case someone had thought of something new ...so lets make a plan.....You will see a box that says NEW TOPIC ...this is where you start...then think of an eye catching headline example....LAPAROSCOPY REVEALED THIS....
or COULD THIS BE PN???? or Please help me I am new here... So that bit's up to you right? this is your post then and answers to you will be posted under that headline.....sorry if I sound a bit bossy ..once a teacher always a teacher!!!Stay IN the Uk bit IF THAT APPLYS TO YOU...... it does mean you will have to print that out again though....have a think about what your main concern is...to me it comes across as amytriptlyn although poor you you have a lot of other things going on....BUT you have come to the right place and you will get some good sound advice...not from docs but people who are or have been in your situation...Right , amytrip... I take 75 mg each night...along with a hoard of other stuff but that would be boring to go over again at this point...This drug (it has been discovered ) was originally for depression but in a much larger dose. I n the small dosage it helps with nerve endings...I think, and someone please put me right if I'm wrong, that the dosage needs to increase from time to time as you can imagine the body gets used to certain amounts and it has no value....I have always encouraged people new to this drug to take it early evening between 6.30pm to 7.3opm the latest...it will help with sleep if nothing else....Lynette I can't help or advice on anything else but there is some one out there who can but start with YOUR POST ...I wish you luck my darling and the certainty of getting the answers you need good luck
love from mo xxx Sue
Re: medication from lynette to little mo
Thanks Sue for the reply,
I did post in the Aust/nz site, but up till now didn't have any replies...if you want to read my full post its New from Australia urgent help needed.
I decided to post on the world site also, as i thought it would get more people reading. I came across your medication post and i thought ahh !! someone else needing help like me. It gets very confusing when you don't have a definite diagnosis, and your told by your pain specialist that you may never find out, or there could be several things contributing. How have you found the side effects of amitrip? im now taking 20mg as from yesterday and as usual with a dose increase there is those few days of dry mouth, eyes and feeling a bit funny. Did you find weight gain a problem at lower doses, and how about now your on 75mg? I have to watch that the dose increase doesn't cause heart palpitations as since my thyroid cancer last year i have to keep my levels almost overactive and that can cause palpitations which my oncologist doesn't want.
I hope that you are finding some relief, and keep in touch.
Thanks again,
lynette
I did post in the Aust/nz site, but up till now didn't have any replies...if you want to read my full post its New from Australia urgent help needed.
I decided to post on the world site also, as i thought it would get more people reading. I came across your medication post and i thought ahh !! someone else needing help like me. It gets very confusing when you don't have a definite diagnosis, and your told by your pain specialist that you may never find out, or there could be several things contributing. How have you found the side effects of amitrip? im now taking 20mg as from yesterday and as usual with a dose increase there is those few days of dry mouth, eyes and feeling a bit funny. Did you find weight gain a problem at lower doses, and how about now your on 75mg? I have to watch that the dose increase doesn't cause heart palpitations as since my thyroid cancer last year i have to keep my levels almost overactive and that can cause palpitations which my oncologist doesn't want.
I hope that you are finding some relief, and keep in touch.
Thanks again,
lynette
Re: medication
Hello Lynette
That's a very pretty name.......You should be in my shoes at the moment!! no I wouldnt want anyone going through what I am.
I am compleatly zombied and just phoned surgery to have a prescription there for me for a lower dosage of pre gablin..I can't walk a straight line.....These drug problems are such a nuisance. I swapped pre gablin for duloxatine but they are the same family as amytriptlyne the doc said....so why give me something that is going to make me sleepy all day? it gets so crazy....one thing I have learned Lynete is YOU really have to be your own case manager...seriously, all these elderly people waling around on frames or in wheel chairs I am sure they could have been helped sooner but if they are not proactive then they go with the flow which is slow....(i like that saying ) go with the flow which is slow,,,,I think I'm drunk actually!!! this will be the last time I take that high dosage........so I know the situation you are in because I could have written what you did.
I am sure I was told that Amytrip....is likely to be the opposite to weight gain...could you google it? where do you live? I feel absolutly sure your doc , reading your notes, would not give you anything to harm any of your conditions....I was also told I may never find out!!! your pain specialist is a key worker for you....and if you can find out the secretary's email address and email her /him to make an appointment and write all your worries and concerns and talk. there are two kinds of pain management one is theraputic and diagnostic the other is pain managent ....I definatly get the dry mouth and everything and when it's really bad I use SALIVEZE it is a mouth spray and really good you can buy from chemist.. is there not a special diet especially for Thyroid you could have a google at that Also if it were me I would write email or letter to Oncologist and ask what he /she thinks about the medication and such ..also a pharmacist is a good person to talk to, sorry Im jumping from one topic to another...Amytrip has been a wonderful friend for me and wouldn't give it up at all..and it looks like I might be on that for life...I was wondering about your palpitations is that caused by anxiety? I wouldn't normall advice this because the side effects for coming off is horrific but diazapam would help with palpitations.... find out if you could have a pain manager who is going to continue looking for a cause ...if you think it is PN then on the home page here are symptoms if you have some ask your doc to refer you to speciaalist ...that way you can rule it in or out....Lyneete I hope you get some more answers from the people here who have expert advice or internally email someone if you think they can help ,...be strong and hopefull and positive and keep focused on what you want from whom and do some targeting...speak soon I hope I have been some help in this drunken I'm sure a wineo would love these tabs but I like full facities don't you take care lots love sue mo xxxx
That's a very pretty name.......You should be in my shoes at the moment!! no I wouldnt want anyone going through what I am.
I am compleatly zombied and just phoned surgery to have a prescription there for me for a lower dosage of pre gablin..I can't walk a straight line.....These drug problems are such a nuisance. I swapped pre gablin for duloxatine but they are the same family as amytriptlyne the doc said....so why give me something that is going to make me sleepy all day? it gets so crazy....one thing I have learned Lynete is YOU really have to be your own case manager...seriously, all these elderly people waling around on frames or in wheel chairs I am sure they could have been helped sooner but if they are not proactive then they go with the flow which is slow....(i like that saying ) go with the flow which is slow,,,,I think I'm drunk actually!!! this will be the last time I take that high dosage........so I know the situation you are in because I could have written what you did.
I am sure I was told that Amytrip....is likely to be the opposite to weight gain...could you google it? where do you live? I feel absolutly sure your doc , reading your notes, would not give you anything to harm any of your conditions....I was also told I may never find out!!! your pain specialist is a key worker for you....and if you can find out the secretary's email address and email her /him to make an appointment and write all your worries and concerns and talk. there are two kinds of pain management one is theraputic and diagnostic the other is pain managent ....I definatly get the dry mouth and everything and when it's really bad I use SALIVEZE it is a mouth spray and really good you can buy from chemist.. is there not a special diet especially for Thyroid you could have a google at that Also if it were me I would write email or letter to Oncologist and ask what he /she thinks about the medication and such ..also a pharmacist is a good person to talk to, sorry Im jumping from one topic to another...Amytrip has been a wonderful friend for me and wouldn't give it up at all..and it looks like I might be on that for life...I was wondering about your palpitations is that caused by anxiety? I wouldn't normall advice this because the side effects for coming off is horrific but diazapam would help with palpitations.... find out if you could have a pain manager who is going to continue looking for a cause ...if you think it is PN then on the home page here are symptoms if you have some ask your doc to refer you to speciaalist ...that way you can rule it in or out....Lyneete I hope you get some more answers from the people here who have expert advice or internally email someone if you think they can help ,...be strong and hopefull and positive and keep focused on what you want from whom and do some targeting...speak soon I hope I have been some help in this drunken I'm sure a wineo would love these tabs but I like full facities don't you take care lots love sue mo xxxx
Re: medication
Hi Lynette - and little mo!
Re Amitriptyline, I wouldn't worry too much about weight gain. 20mg is a very low dose compared to what people take who are using this med as an anti-depressant, at this level you're really not likely to have a problem. My experience was that side effects like drowsiness etc do get a bit less if you stick with it, as you say, after two to three weeks it had just about settled down for me. I do hope it works out well for you, it is really helpful if you can take it. Usually they say that 50mg is the highest for pain relief, but some people do get more pain relief if they take it a bit higher - we're all different aren't we!
Little mo - not to worry too much about the pregabalin making you sleepy - I am on this at the moment, and very happy about it too, although I was very doubtful at the beginning. I started at 25mg a day, and went up by 25 mg every week. Slow! - and very tedious! At one point I got fed up and tried to take it up faster, but it really knocked me out, I simply couldn't stay awake. So I went back to the slow increases, that way I kept functional. By the time I got up to 100mg I was wondering if it was helping, wasn't sure - when I got up to 150mg I knew it was working. And that's where I've got it at the moment, and I can honestly say that the only side effect is a slightly dry mouth. And yay, pain relief!
And actually pregabalin is not the same drug family as duloxetine - pregabalin is an anti-convulsant, duloxetine is an anti-depressant. So your doc was a bit misleading there. Not that it matters really!
Right, I am off, the sun is shining here and I am going to help my husband mow the lawn!
Re Amitriptyline, I wouldn't worry too much about weight gain. 20mg is a very low dose compared to what people take who are using this med as an anti-depressant, at this level you're really not likely to have a problem. My experience was that side effects like drowsiness etc do get a bit less if you stick with it, as you say, after two to three weeks it had just about settled down for me. I do hope it works out well for you, it is really helpful if you can take it. Usually they say that 50mg is the highest for pain relief, but some people do get more pain relief if they take it a bit higher - we're all different aren't we!
Little mo - not to worry too much about the pregabalin making you sleepy - I am on this at the moment, and very happy about it too, although I was very doubtful at the beginning. I started at 25mg a day, and went up by 25 mg every week. Slow! - and very tedious! At one point I got fed up and tried to take it up faster, but it really knocked me out, I simply couldn't stay awake. So I went back to the slow increases, that way I kept functional. By the time I got up to 100mg I was wondering if it was helping, wasn't sure - when I got up to 150mg I knew it was working. And that's where I've got it at the moment, and I can honestly say that the only side effect is a slightly dry mouth. And yay, pain relief!
And actually pregabalin is not the same drug family as duloxetine - pregabalin is an anti-convulsant, duloxetine is an anti-depressant. So your doc was a bit misleading there. Not that it matters really!
Right, I am off, the sun is shining here and I am going to help my husband mow the lawn!