I googled my symptoms and videos of Ms came up. I have watched each and every one of your videos and essentially self-diagnose myself as having MS . I went to doctor and they've confirmed it . I appreciate all you've done and I wish you well in the future and I look forward to your future videos. Thank you for all your help.
Hey Matthew, I’m honoured that you’ve watched all my videos.. thank you. I’m sorry to hear about your MS diagnosis, I hope you’re coping and managing ok. These symptoms certainly are no fun are they. Good to hear from you and thank you for your support.
@@NeilBradleyMS Thank you so much for responding to me personally. Without your videos and your help, I doubt I would of went to see these doctors and had the MRI. And like you, I refused a spinal tap. Our symptoms so much mirrored mine that I already knew I had ms. Normally it would of been a shock, but your videos prepared me for the inevitable diagnosis. Thank you so much again.
You’re very welcome Matthew, and I’m humbled that my videos have helped you so much. Thank you for your kind words, it’s messages such as yours which inspire me to keep making the Vlogs. Take care.
I tried the lyrica for my neuropathy in my legs And the side effects Scared me Plus it didn’t work So I went back on Gabapentin Which doesn’t scare me Nighttime is when My legs act up the worst But I was diagnosed with Fibromyalgia I hope you get relief The leg stuff is crazy
Hi Charlie, I’ve also said at night time it’s as if our bodies switch into a different mode. The pain is always worse at night isn’t it. My legs are terrible too. Lovely to hear from you.
Charli you have the exact same thing as I do. Same meds and I also am going to go back to Gabapentin, cuz the Lyrica don't help.. I get bad spasms and cramps in my legs, the spasms are so bad that I am in tears. Prayers you get better soon.. GB💖
Yes,it is Lyrica here in the states. I would certainly agree with you there on the tradeoff with all of these drugs. I use Baclofen,it works for awhile and then I have to washout so that my body can tolerate again. Now that you have seen the MS doctor,I wonder if he could offer an option?
Hi Avril, I’ve not yet seen the MS Professor as yet.. still waiting for the appointment to come through on that one. Got a feeling it might take a while.
Thank you for sharing your story.It is so much like mine leg twitches, pregabalin etc. What I have found helpful is 75mg pregabalin in the morning with breakfast half baclofen and 25 mg pregabalin with afternoon tea break and 1 baclofen and light snack at bedtime.(I've had ppms for over 20 years) Thanks for your videos. Keep up the good work!!
Hi Anna, and thank you for your message. I’m glad these drugs are helping you. Ive experimented with both of them, for me I’ve found any drug that slows down the central nervous system (Pregabalin)has a negative effect on my mobility. Baclofen makes me very wobbly, I’ve tried this quite a few times. The Pregabalin works really well for nerve pain, but it messes so much with my already very poor mobility, I’ve actually recently stopped taking it. It’s a real Double edged sword, pain or mobility. Take care.
@@NeilBradleyMS Hi thanks for your reply. I was taking 150mg pregabalin twice daily. That must have been far too much because I started to find it difficult to breathe so I weaned myself down to 75 mg in the morning. Double edged sword?? Tell me about it !! I had terrible Trigeminal Britannia and extreme right handed neuropathic pain.(that's what the pregabilin is for) Perhaps if the neurologists and the law makers could feel what MS is really like they would get on with making medicines that work more accessible? .
Hi Anna, Similar to to you when I used to take Oramorph for pain I found this had a side effect which slowed my breathing down when I fell asleep. Pretty scary.
You are describing me to the T!!. I have been on Pregabalin years. This March I cut it down to 300mg ,bed time, instead of twice a day. I cannot walk even for 500 yards without needing to sit down. My legs hurt and my caffs feel like I am carrying 10kg dumbbells. I'm hoping to come off the drug during the coming summer months.
Ah bless you, I’m so terribly sorry to hear that you are suffering like this. Do you have an underlying condition which you are being treated for with Pregabalin, or do you think this drug is the cause of some of your symptoms. Do take care. 🙏
My legs are terrible for shaking/twitching. I also have horrible bladder pain and painful IBS. I read Pregabalin can help. I took it years ago but stopped because I thought it did nothing. These issues came on after I stopped it. Nobody seems to know how to help, Urology, GP, 'specialist' nurse. I'm at my eits end, this seems hopeful.
Hi Colin, I also took Pregabalin for a long time when all of my health problems started back in 2007. I'd been taking it for so long, like you I stopped it because I thought it was no longer doing anything. I'm still not taking it, but recently it's been mentioned again by Dr's because nothing else seems to work for my pain. I can totally understand how you are at your 'Wits end' .. all of these horrible symptoms, not to mention pain are so difficult to deal with and have us not knowing which way to turn at times. Dr's, hospitals, science in general in my opinion just don't have all the answers. I know that feeling of hope you're talking about, we need that .. I would say go for it if you think it could help you. Drugs work differently for different people, just monitor yourself closely, obviously under the watchful eye of your Doctor. Good luck, and I really do hope it benefits you in some positive way.
I was on this drug for a number of years until I decided it no longer seemed to be working for me. So I weened myself off it. I always think a new drug is good to try at a low dose to start with and monitor your side-effects, if you’re not happy with it , Or it doesn’t seem to be working consider taking yourself off it, with your doctors advice of course. Remember, you are the one in control, the doctors are there to guide us. Take care
Hello there Lianne, thank you for asking. I’ll be honest, I’m not great unfortunately. My mobility and pain levels are quite significant and there are no signs of it letting up. I rarely get a break. I hope your health is better than mine. Take care.
Hey there, how long have you been feeling like this? The symptoms you describe do sound neurological, I would recommend you get them checked out by a doctor or neurologist ASAP.
Hey Neil degenerative spinal disease. Spondylitis and stenosis bone spurs was prescribed pregabalin for pain it doesn’t really work but has quiet a few side affects you try a tell a doctor that you think it’s not working and they angry 🤔
Hi Dee, sorry to hear this. I’m sure things will settle down in a day or two and you’ll be feeling much better. I’m not feeling well either, so that makes two of us. Hang in there.
Hi there, it’s been a long time since I took this drug. I seem to recall the Dr started me on a low dose and I worked my way up over a few weeks. However, I started experiencing unpleasant side-effects, so had to reduce it. But then, I didn’t really feel the drug was helping so I decided to come off it. Usually these type of nerve painkilling medications can take up to 6 weeks to start becoming effective.
I've been on it 4 days now, and it just makes me sleepy BUT I have noticed it has improved my mood tremendously as I suffer from deep depression and have crying episodes for no reason. Since I've started I haven't dropped a tear or felt the need to lol.
I've only been on lyrica for the last 3 weeks and I've been pretty depressed since, but I'm giving it a chance, I need it for my pain. I did a vlog on it, come it out.
Hello Ruth, thank you for watching this video.. I've not long been over to your channel, liked and subscribed to you :) I've watched your video and left you a comment. I hope the Lyrica starts to work for you and the feelings of depression subside. I know that it can take some time for this drug to get into your "system" and start to work, so hopefully by then you will start to feel better. Best to you - Neil.
Well it is 3:20 am here as you can tell I am having a bad night as well. Yes it is Lyrica here in the states, you are right about the trade off. I tried it but it did not work for my leg twitch at all. It just made my balance worse and I felt horrible after taking it. Right now I am taking Carisoprodol 350 mg 3 times a day and it is working very well for the twitching and whole body jerks. I take oxy for pain but we have had t days of cold rain so muscle tightness and weakness is what is keeping me up at moment. I hope you can find something soon that works with your body's chemistry, so you can have your mobility back without feeling so bad. Hello to that lovely wife of yours. Your wife and you are in my thoughts.
Thank you very much, it’s quite a challenge trying to figure out something that works but without the worsening mobility side effects. Yes, I can see that you’re having a terrible night and I’m really sorry to hear this, know that I REALLY do understand though and you’re not alone.
Hi, I get a burning pain sensation in my legs too. I take 600mg of pregabalin to help with that, alongside torpiramate and nortriptiline. Have you spoken to your MS nurse about this? I don't know if you want to check out my channel as I have a video about when I struggle with pain and my body goes into spasm. although its mainly my legs and sometimes my spine. I've just found and subscribed to your channel.
Hi Tara - This comment went into spam, no idea why so I've only just approved it. I used to take a much higher dose of Pregabalin, but it started playing havoc with my bladder. MS Nurse said it was the MS, but I begged to differ so I reduced the Pregabalin and those particular bladder problems went away. I was right! I've watched quite a few of your videos now, excellent! Great channel. And thank YOU for your sub to my channel. Take care - Neil.
Ive heard a natural alternative to treat leg twitches and cramps is a quinnine extract from a tree bark named cinchona , however im no doctor , so do your own research p.s ive heard you should be wary taking this with other medications as it can amplify the effects of medications and can have possible rare side effects , Whatever you do, good luck !
Hey Darren, thanks for sharing this information. Yes, Quinnine is actually prescribed as a medicine for reducing cramps. Unfortunately, one of it's common side effects is Tinnitus (ringing in the ears) which is why I won't touch it. Having said that, the leg spasms I'm talking about in this video is caused by damaged nerves as opposed to cramping muscles, so it's very slightly different. I hope all is well with yourself Darren. Take care - Neil.
Hang in there Neil. My hubby has restless leg syndrome and the doc gave him a drug, called Primidone, that works. I take Lyrica for the burning, nerve pain and baclofen for spasms. Sometimes, they don't work though. Xoxo's
Andrea W. Thanks, That’s good to know. I’ve been in Lyrica since 2012 and I’ve been trying to come off it for a long time but it is good for pain and spasms. But worsens my mobility, and at this moment I would always choose better mobility.
I wish id seen this five years ago, i moved to a new doctors and they refused my pregabalin straight off, no tapering, i had no withdrawls or anuthing i was raking 400mg daily, five years later im sat here struggling to type this becase my tremors are bad, i had a salon for 12 years and that ruined my life when i moved doctors, no salon now, sat waiting for an appointment now, its been a ride, i turned to alcohol over the years because docyor refused to refer me to neurolagist, probably because of my age, im 36 have fibromialgia, osteoarthritis, inoperable slipped discs and degenerative discs in my neck, so iam ocnstantly in pain, been in hospital twice because couldnt cope with the pain, was in a coma last year, and im at a point now if i dont get anywere today, im going to sign a dnr and put myself back in hospital, becayse this life isnt worth it, i dont have one, i dont leave the house, i dont sleep for days on end, apologies of spelling mistakes, my tremors shakes are so bad, im lost in translation and dont know were to turn after today, but i dont want this life anymore its that bad, i was at the worrst surgery in the uk, today is my last hope, ive saved all calls and made notes over the years of my struggles of not been tsken seriously, and messsed sbout by doctors and everything, i dont wsnt to be another stastistic but ive fought so hard over the years and theres nothing left in me now, i look back now and wish id never awoken out of thst coma, least i wasnt in pain and spasms, i cry daily and iam now writing this becayse i have nowhere to turn if today doesnt go well. 😢
Hi Dexter, First of all, thank you very much for watching the video and sending me a message. Unbelievable!! Doctors never cease to amaze me, 400mg of Pregabalin (Lyrica) I would say is a very high dose. To expect you to go from that level to zero is nothing more than irresponsible. A Dr really should know better. It even says on the label and instructions of these type of drugs, never just stop them, always speak to your Dr first. I’m so sorry you’ve had to go through this terrible ordeal. I’m so terribly sorry you are feeling like this, but after reading your message a couple of times I really can understand why. You have, and still are really going through the mill. I REALLY hope today is the day you get a Doctor that gives you their full attention, and HELPS you. I understand your constant 24 7 pain, I really do, because it’s the same for me. For me, you can also add into the mix stiff muscles, weakness, significant disability. The latest thing for me is unable to take a single step without holding on or having some aid to help me. Last year I was able to at least take a couple of steps unaided. I know this isn’t about me, but the reason I’m telling you is to re-iterate you’re not alone. My life is basically these four walls now, pretty much. I do go out but it’s only to do necessary chores. I am however incredibly lucky to have my wife who supports me in everything. She really is a God sent Angel. Please, no apologies are needed, I completely understand you’re struggling to write with having tremors. I’m really sorry you’re feeling like this, I wish there was something I could do to help. I really do hope you see this message, I’ve tried to respond as soon as I was able. I’m hoping and praying the Dr today has listened to you and taken you seriously. If not, perhaps you should consider talking to somebody that will take you seriously. My wife has just suggested you put into Google search “depressed need help”, I just did, and it comes up with lots of help, including the samaritans who will speak to you over the telephone. Please give this some thought. If you are able, please come back to me and let me know how you got on today. Sometimes all we need to know is there is somebody out there who cares. We care!! Neil & Teresa. 🙏💛
Neil, hope things are going better for you, I want to see that smile again🙏🏽
I googled my symptoms and videos of Ms came up. I have watched each and every one of your videos and essentially self-diagnose myself as having MS . I went to doctor and they've confirmed it . I appreciate all you've done and I wish you well in the future and I look forward to your future videos. Thank you for all your help.
Hey Matthew, I’m honoured that you’ve watched all my videos.. thank you. I’m sorry to hear about your MS diagnosis, I hope you’re coping and managing ok. These symptoms certainly are no fun are they. Good to hear from you and thank you for your support.
@@NeilBradleyMS Thank you so much for responding to me personally. Without your videos and your help, I doubt I would of went to see these doctors and had the MRI. And like you, I refused a spinal tap. Our symptoms so much mirrored mine that I already knew I had ms. Normally it would of been a shock, but your videos prepared me for the inevitable diagnosis. Thank you so much again.
You’re very welcome Matthew, and I’m humbled that my videos have helped you so much. Thank you for your kind words, it’s messages such as yours which inspire me to keep making the Vlogs. Take care.
Wishing you all the best!
I tried the lyrica for my neuropathy in my legs
And the side effects
Scared me
Plus it didn’t work
So I went back on
Gabapentin
Which doesn’t scare me
Nighttime is when
My legs act up the worst
But
I was diagnosed with
Fibromyalgia
I hope you get relief
The leg stuff is crazy
Hi Charlie, I’ve also said at night time it’s as if our bodies switch into a different mode. The pain is always worse at night isn’t it. My legs are terrible too. Lovely to hear from you.
Charli you have the exact same thing as I do. Same meds and I also am going to go back to Gabapentin, cuz the Lyrica don't help.. I get bad spasms and cramps in my legs, the spasms are so bad that I am in tears. Prayers you get better soon.. GB💖
Great to see you Neal.. legs pain and twitches are bad.. I hope You find a med that will help 😓 GB ,😊
Yes,it is Lyrica here in the states. I would certainly agree with you there on the tradeoff with all of these drugs. I use Baclofen,it works for awhile and then I have to washout so that my body can tolerate again. Now that you have seen the MS doctor,I wonder if he could offer an option?
Hi Avril, I’ve not yet seen the MS Professor as yet.. still waiting for the appointment to come through on that one. Got a feeling it might take a while.
@@NeilBradleyMS I sure hope not but I know it can take weeks to get into a MS Neuro here.
Thank you for sharing your story.It is so much like mine leg twitches, pregabalin etc.
What I have found helpful is 75mg pregabalin in
the morning with breakfast half baclofen and 25 mg pregabalin with afternoon tea break and 1 baclofen and light snack at bedtime.(I've had ppms for over 20 years)
Thanks for your videos.
Keep up the good work!!
Hi Anna, and thank you for your message. I’m glad these drugs are helping you. Ive experimented with both of them, for me I’ve found any drug that slows down the central nervous system (Pregabalin)has a negative effect on my mobility. Baclofen makes me very wobbly, I’ve tried this quite a few times. The Pregabalin works really well for nerve pain, but it messes so much with my already very poor mobility, I’ve actually recently stopped taking it. It’s a real
Double edged sword, pain or mobility. Take care.
@@NeilBradleyMS Hi thanks for your reply.
I was taking 150mg pregabalin twice daily. That must have been far too much because I started to find it difficult to breathe so I weaned myself down to 75 mg in the morning.
Double edged sword?? Tell me about it !!
I had terrible Trigeminal Britannia and extreme right handed neuropathic pain.(that's what the pregabilin is for)
Perhaps if the neurologists and the law makers could feel what MS is really like they would get on with making medicines that work more accessible?
.
Hi Anna, Similar to to you when I used to take Oramorph for pain I found this had a side effect which slowed my breathing down when I fell asleep. Pretty scary.
I tried magnesium and panothenic acid (a B vitamin) they made a difference to my leg pain and twitching and burning.
Hi Chrissy, I’m so pleased to hear they have made a difference for you. Thank you for sharing that. Take care.
You are describing me to the T!!. I have been on Pregabalin years. This March I cut it down to 300mg ,bed time, instead of twice a day. I cannot walk even for 500 yards without needing to sit down. My legs hurt and my caffs feel like I am carrying 10kg dumbbells. I'm hoping to come off the drug during the coming summer months.
Ah bless you, I’m so terribly sorry to hear that you are suffering like this. Do you have an underlying condition which you are being treated for with Pregabalin, or do you think this drug is the cause of some of your symptoms. Do take care. 🙏
Is puffy eye one of the side effect sir?
Hi there, whilst on Pregabalin I did not suffer with puffy eyes as a side effect. Hope that helps.
My legs are terrible for shaking/twitching. I also have horrible bladder pain and painful IBS. I read Pregabalin can help. I took it years ago but stopped because I thought it did nothing. These issues came on after I stopped it. Nobody seems to know how to help, Urology, GP, 'specialist' nurse. I'm at my eits end, this seems hopeful.
Hi Colin, I also took Pregabalin for a long time when all of my health problems started back in 2007. I'd been taking it for so long, like you I stopped it because I thought it was no longer doing anything. I'm still not taking it, but recently it's been mentioned again by Dr's because nothing else seems to work for my pain.
I can totally understand how you are at your 'Wits end' .. all of these horrible symptoms, not to mention pain are so difficult to deal with and have us not knowing which way to turn at times. Dr's, hospitals, science in general in my opinion just don't have all the answers.
I know that feeling of hope you're talking about, we need that .. I would say go for it if you think it could help you. Drugs work differently for different people, just monitor yourself closely, obviously under the watchful eye of your Doctor.
Good luck, and I really do hope it benefits you in some positive way.
Been prescribed 25mg twice day worried about all negative reviews how dangerous it is like suicidal thoughts
I was on this drug for a number of years until I decided it no longer seemed to be working for me. So I weened myself off it. I always think a new drug is good to try at a low dose to start with and monitor your side-effects, if you’re not happy with it , Or it doesn’t seem to be working consider taking yourself off it, with your doctors advice of course. Remember, you are the one in control, the doctors are there to guide us. Take care
Hello sir. How are you now?..
Hello there Lianne, thank you for asking. I’ll be honest, I’m not great unfortunately. My mobility and pain levels are quite significant and there are no signs of it letting up. I rarely get a break. I hope your health is better than mine. Take care.
@@NeilBradleyMS get well soon sir..
I do understand
I just saw your video mate and I have the problem as you left leg twitch dry mouth and a bit confused and legs are jelly as well
Hey there, how long have you been feeling like this? The symptoms you describe do sound neurological, I would recommend you get them checked out by a doctor or neurologist ASAP.
Hey Neil degenerative spinal disease. Spondylitis and stenosis bone spurs was prescribed pregabalin for pain it doesn’t really work but has quiet a few side affects you try a tell a doctor that you think it’s not working and they angry 🤔
Just been diagnosed yesterday with rrms it’s made me extremely scared. The treatment there offering is very scary x
Hi There, I’m really sorry to hear of your MS diagnosis. What treatment are they offering you?
Hi Neil not feeling well size effect of ocrevus
Hi Dee, sorry to hear this. I’m sure things will settle down in a day or two and you’ll be feeling much better. I’m not feeling well either, so that makes two of us. Hang in there.
How long did this med take to kick in? Ive been on ut for two weeks and i feel nothing. Is that normal?
Hi there, it’s been a long time since I took this drug. I seem to recall the Dr started me on a low dose and I worked my way up over a few weeks. However, I started experiencing unpleasant side-effects, so had to reduce it. But then, I didn’t really feel the drug was helping so I decided to come off it. Usually these type of nerve painkilling medications can take up to 6 weeks to start becoming effective.
I've been on it 4 days now, and it just makes me sleepy BUT I have noticed it has improved my mood tremendously as I suffer from deep depression and have crying episodes for no reason. Since I've started I haven't dropped a tear or felt the need to lol.
@Eastsidenucca I’m pleased to hear it’s helping you.
I've only been on lyrica for the last 3 weeks and I've been pretty depressed since, but I'm giving it a chance, I need it for my pain. I did a vlog on it, come it out.
Hello Ruth, thank you for watching this video.. I've not long been over to your channel, liked and subscribed to you :) I've watched your video and left you a comment. I hope the Lyrica starts to work for you and the feelings of depression subside. I know that it can take some time for this drug to get into your "system" and start to work, so hopefully by then you will start to feel better. Best to you - Neil.
Well it is 3:20 am here as you can tell I am having a bad night as well. Yes it is Lyrica here in the states, you are right about the trade off. I tried it but it did not work for my leg twitch at all. It just made my balance worse and I felt horrible after taking it. Right now I am taking Carisoprodol 350 mg 3 times a day and it is working very well for the twitching and whole body jerks. I take oxy for pain but we have had t days of cold rain so muscle tightness and weakness is what is keeping me up at moment. I hope you can find something soon that works with your body's chemistry, so you can have your mobility back without feeling so bad. Hello to that lovely wife of yours. Your wife and you are in my thoughts.
Thank you very much, it’s quite a challenge trying to figure out something that works but without the worsening mobility side effects. Yes, I can see that you’re having a terrible night and I’m really sorry to hear this, know that I REALLY do understand though and you’re not alone.
@@NeilBradleyMS and know you are not alone either. We will get through this, it may take some doing but we will get there.
Sounds like the lyrica is relaxing your legs too much. I hope you find some relief Neil.
I think you’re right there Patty.
I don’t like lyrica. It’s makes me feel really groggy. I take gabapentin (neurontin) 800mg 3 times a day. It doesn’t make me feel that way.
Hi, I get a burning pain sensation in my legs too. I take 600mg of pregabalin to help with that, alongside torpiramate and nortriptiline. Have you spoken to your MS nurse about this? I don't know if you want to check out my channel as I have a video about when I struggle with pain and my body goes into spasm. although its mainly my legs and sometimes my spine. I've just found and subscribed to your channel.
Hi Tara - This comment went into spam, no idea why so I've only just approved it. I used to take a much higher dose of Pregabalin, but it started playing havoc with my bladder. MS Nurse said it was the MS, but I begged to differ so I reduced the Pregabalin and those particular bladder problems went away. I was right! I've watched quite a few of your videos now, excellent! Great channel. And thank YOU for your sub to my channel. Take care - Neil.
oh really? as I have bladder issues but put it down to the MS too. Never once thought it could be the medication.
Definitely was the Pregabalin, in fact I’ve stopped it completely now. Do a Google on “Pregabalin bladder issues”.
i'm use cannabis,, balanced hybrid that i grow, or buy cuz i'm in canada works well
Hello Jan, that’s really great. I’m really pleased to hear that it must be working well for you. You take care. 🙏💛
Ive heard a natural alternative to treat leg twitches and cramps is a quinnine extract from a tree bark named cinchona , however im no doctor , so do your own research p.s ive heard you should be wary taking this with other medications as it can amplify the effects of medications and can have possible rare side effects , Whatever you do, good luck !
Hey Darren, thanks for sharing this information. Yes, Quinnine is actually prescribed as a medicine for reducing cramps. Unfortunately, one of it's common side effects is Tinnitus (ringing in the ears) which is why I won't touch it. Having said that, the leg spasms I'm talking about in this video is caused by damaged nerves as opposed to cramping muscles, so it's very slightly different. I hope all is well with yourself Darren. Take care - Neil.
Glad you can walk better
Thanks Michelle.
Hang in there Neil. My hubby has restless leg syndrome and the doc gave him a drug, called Primidone, that works. I take Lyrica for the burning, nerve pain and baclofen for spasms. Sometimes, they don't work though. Xoxo's
Andrea W. Thanks, That’s good to know. I’ve been in Lyrica since 2012 and I’ve been trying to come off it for a long time but it is good for pain and spasms. But worsens my mobility, and at this moment I would always choose better mobility.
You sound like me..sorry
I wish id seen this five years ago, i moved to a new doctors and they refused my pregabalin straight off, no tapering, i had no withdrawls or anuthing i was raking 400mg daily, five years later im sat here struggling to type this becase my tremors are bad, i had a salon for 12 years and that ruined my life when i moved doctors, no salon now, sat waiting for an appointment now, its been a ride, i turned to alcohol over the years because docyor refused to refer me to neurolagist, probably because of my age, im 36 have fibromialgia, osteoarthritis, inoperable slipped discs and degenerative discs in my neck, so iam ocnstantly in pain, been in hospital twice because couldnt cope with the pain, was in a coma last year, and im at a point now if i dont get anywere today, im going to sign a dnr and put myself back in hospital, becayse this life isnt worth it, i dont have one, i dont leave the house, i dont sleep for days on end, apologies of spelling mistakes, my tremors shakes are so bad, im lost in translation and dont know were to turn after today, but i dont want this life anymore its that bad, i was at the worrst surgery in the uk, today is my last hope, ive saved all calls and made notes over the years of my struggles of not been tsken seriously, and messsed sbout by doctors and everything, i dont wsnt to be another stastistic but ive fought so hard over the years and theres nothing left in me now, i look back now and wish id never awoken out of thst coma, least i wasnt in pain and spasms, i cry daily and iam now writing this becayse i have nowhere to turn if today doesnt go well. 😢
Hi Dexter,
First of all, thank you very much for watching the video and sending me a message. Unbelievable!! Doctors never cease to amaze me, 400mg of Pregabalin (Lyrica) I would say is a very high dose. To expect you to go from that level to zero is nothing more than irresponsible. A Dr really should know better. It even says on the label and instructions of these type of drugs, never just stop them, always speak to your Dr first. I’m so sorry you’ve had to go through this terrible ordeal.
I’m so terribly sorry you are feeling like this, but after reading your message a couple of times I really can understand why. You have, and still are really going through the mill. I REALLY hope today is the day you get a Doctor that gives you their full attention, and HELPS you.
I understand your constant 24 7 pain, I really do, because it’s the same for me. For me, you can also add into the mix stiff muscles, weakness, significant disability. The latest thing for me is unable to take a single step without holding on or having some aid to help me. Last year I was able to at least take a couple of steps unaided. I know this isn’t about me, but the reason I’m telling you is to re-iterate you’re not alone. My life is basically these four walls now, pretty much. I do go out but it’s only to do necessary chores. I am however incredibly lucky to have my wife who supports me in everything. She really is a God sent Angel.
Please, no apologies are needed, I completely understand you’re struggling to write with having tremors.
I’m really sorry you’re feeling like this, I wish there was something I could do to help. I really do hope you see this message, I’ve tried to respond as soon as I was able. I’m hoping and praying the Dr today has listened to you and taken you seriously. If not, perhaps you should consider talking to somebody that will take you seriously. My wife has just suggested you put into Google search “depressed need help”, I just did, and it comes up with lots of help, including the samaritans who will speak to you over the telephone. Please give this some thought.
If you are able, please come back to me and let me know how you got on today. Sometimes all we need to know is there is somebody out there who cares.
We care!!
Neil & Teresa. 🙏💛