Pregabalin side effects

General General TN & GPN (Old Site)
1

Hi everyone. I'm new to the site and very grateful I found it as I'm getting lots of useful information. I have type 1 TN with severe 'electric shocks' and deep burning sensation on right side. I couldn't stomach carbamazepine or gabapentin, so I'm now on pregabalin, approximately 300 mgs daily (sometimes more if pain is really bad). I've been taking it now for just over 2 weeks and yes it's really helping with the pain but I am zombiefied (unsteady, forgetful, tired and just 'not myself'). I'm sure many of you know that feeling. My question is how long is it likely to take to get used to the medication? (doc tells me people do get used to it and can function pretty well!). I've been off sick for over a month now, but if I could function better mentally I could possibly deal with the pain by adjusting the meds.

I would be interested to know if anyone is on pregabalin and managing to function reasonably well! Many thanks.

Suzy

2

Did you immediately start at 300mg/day? If so, that's a pretty high dose and no wonder you're feeling the side effects so severely. I started taking it a few months ago. I started at 100mg/day, then after a couple weeks, went up to 200mg/day. Then a few weeks after that,went up to 225/mg day, maybe going to 300mg if necessary. My point, you started with a fairly high dose so you've had it a little tougher.

Most people do get used to the side effects. It can take anywhere from a few weeks to a few months, just depends. Usually I notice a difference after a month or so. If it's helping the pain just stick with it and you'll probably adjust. Do you take your meds three times a day, or two? Taking it three times a day helps lessen the side effects for me.

3

Hi Suzy, I'm also on Pregabalin and have been for approx 10 months now. Like yourself I couldn't tolerate the other meds and the Pregabalin does help with the pain but I'm still sufferring with the side effects, although they have settled a little for me now. Saying that, I'm still unable to work and as a result I have lost my job. However, as Crystal pointed out there are many people who do adjust to the meds but timescales are different for everyone. I was initially put on 300mgs per day and was totally zombified and when I saw the neurologist he wasn't impressed with this as he said there was no wonder I was the way I was as I'd been put on too higher dose too quickly. I still feel quite sedated on a morning and about a couple of hours after taking my morning meds then I start feeling a little more fuzzy and wobbly.

I hope you soon start adjusting to your meds, have you been referred to a Neurologist yet as he/she might be able to advise you best on what dosage you should really be on.

4

hi iam on pregaplain 150 mg 3 times a day i haveent had any side affect yet i was on nurition which was fine but the pain was getting very bad so doctor changed me to pregablin the pain not toatlly gone but i can cope with it.today i woke up like if i was locked jaw with dreadfull pain in my teeth jaw and my throath dont no why this is happening .i hope u will fell better when u get used to taken the meds take care gob bless

5

Hi Suzy,
Were you put on on lower dose and then slowly built up to that dose, or did you start off at that dose? This is medication also needs to slowly build up in your body with a small dose. And then slowly go up to the right dose for you. I started at 100 mg for the day and was brought up to 400mg day slowly when I first started taking it. The zombie feeling only lasted for about a month then went away. With the expect of month and half this last spring I’ve been taking this for a year now. Other side effects still remain such as uncontrolled shaking at times, and edema that also comes and go. My pain doc is watching these side effects carefully though. As another poster has said how many times you take you dose may also be a factor. My neuro stated the higher doses stay in the body longer, which seems to be true for me. Maybe switch to 150mg twice a day may help lower the side effect for you? Also taking this with food will help lower the side effects. How long the zombie affect will last I think is depended upon each individual. If you are getting refiel from pain stick with it will get better sooner or later. Take care

6

Hi Crystal - thanks for answering. No I started very slowly (after weaning off Carabamazepine first and then Gabapentin, both of which gave me awful side effects). I initially took 50 mg twice a day and have increased slowly to try and control the pain. I do take it 3 times daily. At least I don't get the terrible headaches I did with the first two drugs I tried (they were awful - like my head would burst). I am reasonably comfortable on this current dose (so long as I don't touch my face) but occasionally had to add another 50 mg in because of the pain. I tend to be fairly OK in the house, but still find myself staggering occasionally, forgetting words (very frustrating!) all the time and just feeling 'not myself' all the time. Don't get me wrong I'm very grateful I seem to have found something that helps the pain though, I couldn't cope without it now, but do wonder if I'll get back to being able to go back to work and some kind of normality again! I'm having the MRI done on Sunday, so we'll see if that shows anything. Guess I'll just have to be patient (which I'm not!). Thanks, hope you're having a good day. Suzy

immediately start at 300mg/day? If so, that's a pretty high dose and no wonder you're feeling the side effects so severely. I started taking it a few months ago. I started at 100mg/day, then after a couple weeks, went up to 200mg/day. Then a few weeks after that,went up to 225/mg day, maybe going to 300mg if necessary. My point, you started with a fairly high dose so you've had it a little tougher.

Most people do get used to the side effects. It can take anywhere from a few weeks to a few months, just depends. Usually I notice a difference after a month or so. If it's helping the pain just stick with it and you'll probably adjust. Do you take your meds three times a day, or two? Taking it three times a day helps lessen the side effects for me.

7

Hi Mandy and thanks for your reply - I see you're also in North Yorkshire! As I was telling Crystal I started on a very low dose of Pregabalin (50 mg twice daily) and have upped the dose relatively slowly to try and control the pain (which it has done quite effectively unless I'm daft enough to touch my face by mistake!). Even on this dose, washing my face, smiling, eating, teeth cleaning etc are all still very painful, so the option is there to increase dose but I would be totally zombified then. I guess it's a balance between pain and being spaced out. I suppose I am really concerned now about how quickly I may adjust, and IF i'll be able to return to my job, which is a real worry. I have seen a neurologist (lovely man, but after being told I would have to wait until mid January for an appointment on the NHS as an urgent referral I ended up having to pay privately to be seen quickly) and am now waiting for an MRI this week in Leeds. He thinks I'm OK on this dose, but to increase if and when I need to. He said he hoped the side effects wouldn't be too bad for me, but did tell my doctor that I'm obviously not fit for work currently due to the way I'm being affected by it.

Suzy

Mandy said:

Hi Suzy, I'm also on Pregabalin and have been for approx 10 months now. Like yourself I couldn't tolerate the other meds and the Pregabalin does help with the pain but I'm still sufferring with the side effects, although they have settled a little for me now. Saying that, I'm still unable to work and as a result I have lost my job. However, as Crystal pointed out there are many people who do adjust to the meds but timescales are different for everyone. I was initially put on 300mgs per day and was totally zombified and when I saw the neurologist he wasn't impressed with this as he said there was no wonder I was the way I was as I'd been put on too higher dose too quickly. I still feel quite sedated on a morning and about a couple of hours after taking my morning meds then I start feeling a little more fuzzy and wobbly.

I hope you soon start adjusting to your meds, have you been referred to a Neurologist yet as he/she might be able to advise you best on what dosage you should really be on.

8

Hi Suzy, like yourself, I had to pay privately to see a Neurologist as the waiting list was so long. I went to York and but after several apointments again paying privately, he referred me to a Neurosurgeon in Middlesbrough. Due to my non-tolerance of the meds I am having an MVD later this month. i'm not really looking forward to this as I know I have to go through the procedure twice as I suffer with TN on both sides (Arrrrrgh ha ha!).

I remember being in the same place as you are now, just wishing I could feel 'norma' again but time passed me by so quickly and here I am a year later feeling a lot better but still unsteady, memory loss and word searching is still problamatic for me, although it isn't as bad as it was initially but I've reached a stage where I'm not getting any better with it but nor am I getting worse....if that all makes sense to you! I think what I'm trying to say is you just have to go with it, unfortunately, it will be what it will be! You will go through many emotions with this illness including anger, I remember being very angry when I was first told that i would be losing my job, I wanted to scream and shout and cry as it wasn't fair that this was taking away everything I have ever worked for. I am very lucky though that I have a very supportive husband who has stood by me through all of this, it has really tested our relationship as we only got married in Aug 2011 and I came down with TN in Oct 2011, so what a honeymoon period we have had! Support fro people on here has also helped, especially through those days when you just feel so alone, angry etc!

My advice to you is to use this site as much and as often as you want as there is always someone there to give you answers, advice or just a listening ear, be it virtual one but from those who are in the same position and know just how you are felling (I know I've gone around the houses there but word block strikes again!!!).

Where abouts in North Yorkshire are you from, I'm in Thirsk, if you know where that is.....North Yorkshire is a large county to live in ha ha!

Hope you're feeling a little better today : )

9

Thanks for your reply Kari. You've given me a couple of things to think about, like taking the meds with food to lower the side effects and possibly taking it twice daily instead - I had wondered about doing that but haven't experimented with it yet. Yes I did start off very slowly with this drug (50 mg twice daily, and increased fairly slowly to try to control the pain). I am fairly comfortable at this dose most of the time (but obviously avoid touching the right side of my face). I'm not sure what's going to happen when the cold weather arrives though, I've experienced horrific pain a few times from just a slight breeze on my face - I guess I'll have to stay indoors if that's anything to go by! At least this drug works and I am tolerating it, even if I can't remember words, names or where I've put things!

Suzy


Kari said:

Hi Suzy,
Were you put on on lower dose and then slowly built up to that dose, or did you start off at that dose? This is medication also needs to slowly build up in your body with a small dose. And then slowly go up to the right dose for you. I started at 100 mg for the day and was brought up to 400mg day slowly when I first started taking it. The zombie feeling only lasted for about a month then went away. With the expect of month and half this last spring I've been taking this for a year now. Other side effects still remain such as uncontrolled shaking at times, and edema that also comes and go. My pain doc is watching these side effects carefully though. As another poster has said how many times you take you dose may also be a factor. My neuro stated the higher doses stay in the body longer, which seems to be true for me. Maybe switch to 150mg twice a day may help lower the side effect for you? Also taking this with food will help lower the side effects. How long the zombie affect will last I think is depended upon each individual. If you are getting refiel from pain stick with it will get better sooner or later. Take care
10

Hi Mandy, thanks for answering again. I live in Skipton, so i guess we're not so far away from each other. I don't know Thirsk - you're over near York I think? Paying privately goes against the grain with me really, as I'm a medical secretary within the NHS and I'm used to arranging referrals and sorting out the problems that crop up along the way for other people! However the week I had to chase up the NHS system to find out about being seen I was at my wits end. I was in so much pain and nobody was listening to me on the phone. At my GP practice the secretary was really helpful, however I was given the name of the neurologist in Leeds via the helpline for TNA after i phoned them for help when I was really upset. A guy from Devon (I think) rang me back- one of the TNA members who man the phone-line (before i even became a member, so I'm really grateful to them). I ended up talking to his secretary in Leeds (in tears) who put me in for an appointment the following Monday. He was lovely, and said he would arrange an urgent MRI and follow up on the NHS, so I have the MRI this Sunday morning! I guess I'm hoping it might show something up that can be fixed, but probably shouldn't get my hopes up! How did they decide that an MDV might be the correct treatment for you? Did you have an MRI done?

Mandy said:

Hi Suzy, like yourself, I had to pay privately to see a Neurologist as the waiting list was so long. I went to York and but after several apointments again paying privately, he referred me to a Neurosurgeon in Middlesbrough. Due to my non-tolerance of the meds I am having an MVD later this month. i'm not really looking forward to this as I know I have to go through the procedure twice as I suffer with TN on both sides (Arrrrrgh ha ha!).

I remember being in the same place as you are now, just wishing I could feel 'norma' again but time passed me by so quickly and here I am a year later feeling a lot better but still unsteady, memory loss and word searching is still problamatic for me, although it isn't as bad as it was initially but I've reached a stage where I'm not getting any better with it but nor am I getting worse....if that all makes sense to you! I think what I'm trying to say is you just have to go with it, unfortunately, it will be what it will be! You will go through many emotions with this illness including anger, I remember being very angry when I was first told that i would be losing my job, I wanted to scream and shout and cry as it wasn't fair that this was taking away everything I have ever worked for. I am very lucky though that I have a very supportive husband who has stood by me through all of this, it has really tested our relationship as we only got married in Aug 2011 and I came down with TN in Oct 2011, so what a honeymoon period we have had! Support fro people on here has also helped, especially through those days when you just feel so alone, angry etc!

My advice to you is to use this site as much and as often as you want as there is always someone there to give you answers, advice or just a listening ear, be it virtual one but from those who are in the same position and know just how you are felling (I know I've gone around the houses there but word block strikes again!!!).

Where abouts in North Yorkshire are you from, I'm in Thirsk, if you know where that is.....North Yorkshire is a large county to live in ha ha!

Hope you're feeling a little better today : )

11

Hi Lorraine - I'm sorry to hear you're not feeling well again. Hope you're a bit better today and your teeth/jaw pain has improved. I guess I'll have to be patient and hope the side effects lessen a bit. Thanks for your reply. Take care

lorraine said:

hi iam on pregaplain 150 mg 3 times a day i haveent had any side affect yet i was on nurition which was fine but the pain was getting very bad so doctor changed me to pregablin the pain not toatlly gone but i can cope with it.today i woke up like if i was locked jaw with dreadfull pain in my teeth jaw and my throath dont no why this is happening .i hope u will fell better when u get used to taken the meds take care gob bless

12

Hi Suzy, I know what you mean about paying privately and it going against the grain, I felt exactly the same way as I worked in an intergrated mental health team (with the NHS TEWV) and i hated having to pay for something which we should get free. Like yourself, I just couldn't wait 3 months to be seen so we paid. I went to York as I was told that they had a good Neurology department and my neurologist was a lovely guy.

My GP was great with me and diagonosed me with TN straight away so I guess I was lucky but then I had to see a locum doctor who was horrible and told me to go back to the dentist, he also changed my medication against what the lead GP had prescribed for me! I came out in tears as I was in so much pain and at that point so confused. I had a conversation with Jackie and others on here who advised me to go back and see my own GP as I was uncontrolably upset, I did and he wasn't impressed with the outcome of the locum dr.

You sound like you've had a pretty bad deal so far so hopefully now you will receive the right treatment for your TN. I had an MRI in Dec but when I was referred to the Neurosurgeon he arranged a further MRI and then a few days later I had to go for an MRA circle of willis non-contrast scan. I suffer with bilateral TN and I guess lucky for me, arteries were seen on both sides pressing on the TN, on the right it's looped around it apparently so at least they can see what they will be working with......I hope!!!

It was suggested that I need the MVD's as I just can't tolerate any of the medications, had I been able to tolerate the meds then I'm not sure i would have agreed to the MVD's but I don't see that I have any other option if I want to function as i used to again. I feel this illness has wiped out my life at the moment, my daughter had her first baby last Dec and I was unable to help out as I was a total zombie at that time and couldn't be trusted with him, I've got two more granchildren coming, one in Nov and the next in Dec and I really want to be able to help out with these but I feel that having the MVD now, I may have to accept that i won't be able to, but we'll see, I'm not giving up hope ha ha!

I'm having my MVD at James Cook University Hospital in Middlesbrough and it seems as though there is a very good team who will be doing it so I'm trying not to worry about it to much. I've been very busy decorating the house, I think to keep my mind of it and I'm starting with the hallway tomorrow.....against my husbands request, but I just feel as though I need to do it!

Skipton isn't that far away from Thirsk, I don't think, I'm about 24 miles away from York, we're kind of in the middle of York and Middlesbrough. I think you're the closest member to me everyone else I've met have lived miles away, it's kind of comforting knowing there is someone with this condition closer to me, although I'm sorry that you do have it and wouldn't wish this on my worst enemy!

I hope your MRI goes well for you on Sunday and please let us know how you get on.

I feel as though I have waffeled on long enough so I'll go for now

Take care and keep in touch

Mandy : )

suzy1 said:

Hi Mandy, thanks for answering again. I live in Skipton, so i guess we're not so far away from each other. I don't know Thirsk - you're over near York I think? Paying privately goes against the grain with me really, as I'm a medical secretary within the NHS and I'm used to arranging referrals and sorting out the problems that crop up along the way for other people! However the week I had to chase up the NHS system to find out about being seen I was at my wits end. I was in so much pain and nobody was listening to me on the phone. At my GP practice the secretary was really helpful, however I was given the name of the neurologist in Leeds via the helpline for TNA after i phoned them for help when I was really upset. A guy from Devon (I think) rang me back- one of the TNA members who man the phone-line (before i even became a member, so I'm really grateful to them). I ended up talking to his secretary in Leeds (in tears) who put me in for an appointment the following Monday. He was lovely, and said he would arrange an urgent MRI and follow up on the NHS, so I have the MRI this Sunday morning! I guess I'm hoping it might show something up that can be fixed, but probably shouldn't get my hopes up! How did they decide that an MDV might be the correct treatment for you? Did you have an MRI done?

Mandy said:

Hi Suzy, like yourself, I had to pay privately to see a Neurologist as the waiting list was so long. I went to York and but after several apointments again paying privately, he referred me to a Neurosurgeon in Middlesbrough. Due to my non-tolerance of the meds I am having an MVD later this month. i'm not really looking forward to this as I know I have to go through the procedure twice as I suffer with TN on both sides (Arrrrrgh ha ha!).

I remember being in the same place as you are now, just wishing I could feel 'norma' again but time passed me by so quickly and here I am a year later feeling a lot better but still unsteady, memory loss and word searching is still problamatic for me, although it isn't as bad as it was initially but I've reached a stage where I'm not getting any better with it but nor am I getting worse....if that all makes sense to you! I think what I'm trying to say is you just have to go with it, unfortunately, it will be what it will be! You will go through many emotions with this illness including anger, I remember being very angry when I was first told that i would be losing my job, I wanted to scream and shout and cry as it wasn't fair that this was taking away everything I have ever worked for. I am very lucky though that I have a very supportive husband who has stood by me through all of this, it has really tested our relationship as we only got married in Aug 2011 and I came down with TN in Oct 2011, so what a honeymoon period we have had! Support fro people on here has also helped, especially through those days when you just feel so alone, angry etc!

My advice to you is to use this site as much and as often as you want as there is always someone there to give you answers, advice or just a listening ear, be it virtual one but from those who are in the same position and know just how you are felling (I know I've gone around the houses there but word block strikes again!!!).

Where abouts in North Yorkshire are you from, I'm in Thirsk, if you know where that is.....North Yorkshire is a large county to live in ha ha!

Hope you're feeling a little better today : )

13

SuZy some of the side affect don’t go away, especially the remembering words thing. Just this morning I type out a gobble guck message to my boss, I read once over and do not notice how messed up the message was, totally embarrassing and frustrating at the same time. One thing to remember is sometimes medication will only bring your pain levels down bit the pain will not fully go away. It’s a bit of a bummer I know. So you will need to figure out what pain level you can function on at some type of normal for you. I know that can be hard to figure out and decide on.




suzy1 said:

Thanks for your reply Kari. You’ve given me a couple of things to think about, like taking the meds with food to lower the side effects and possibly taking it twice daily instead - I had wondered about doing that but haven’t experimented with it yet. Yes I did start off very slowly with this drug (50 mg twice daily, and increased fairly slowly to try to control the pain). I am fairly comfortable at this dose most of the time (but obviously avoid touching the right side of my face). I’m not sure what’s going to happen when the cold weather arrives though, I’ve experienced horrific pain a few times from just a slight breeze on my face - I guess I’ll have to stay indoors if that’s anything to go by! At least this drug works and I am tolerating it, even if I can’t remember words, names or where I’ve put things!

Suzy


Kari said:

Hi Suzy,
Were you put on on lower dose and then slowly built up to that dose, or did you start off at that dose? This is medication also needs to slowly build up in your body with a small dose. And then slowly go up to the right dose for you. I started at 100 mg for the day and was brought up to 400mg day slowly when I first started taking it. The zombie feeling only lasted for about a month then went away. With the expect of month and half this last spring I’ve been taking this for a year now. Other side effects still remain such as uncontrolled shaking at times, and edema that also comes and go. My pain doc is watching these side effects carefully though. As another poster has said how many times you take you dose may also be a factor. My neuro stated the higher doses stay in the body longer, which seems to be true for me. Maybe switch to 150mg twice a day may help lower the side effect for you? Also taking this with food will help lower the side effects. How long the zombie affect will last I think is depended upon each individual. If you are getting refiel from pain stick with it will get better sooner or later. Take care

14

I am afraid to lose my job. If I lose my job, I will end up homeless becasue there is noone else there for me or who can help me. I have been independent all my life and have worked hard for everything I have. Somedays I am in so much pain that I go to the emergency room because nothing helps and a quick fix is my only option. Though I live in Las Vegas, I am seeking alternative help in Baltimore Maryland at he John Hopkins Neurosurgery. Las Vegas doesnt take much serious. The last time I was at the emergency room in pain they gave me some pain meds and my blood pressure was 250/133 and kept climbing. By the time they released me, it was 211/130. I continue to work, but I see myself as a very grouchy person, irritated and less tolerant of other peoples problems. I know eventually, I may lose my job. So I will keep seeking a resolution for my pain and pray that it will be soon.

15

Hi Toni, I'm really sorry to hear the position that you find yourself in, this illness causes so much more than just pain to peoples lives. I wish I could offer you more than just encouraging words and find a solution to your problems but unfortunately I can't. I do hope that you do receive some help from Baltimore and that your pain lessons very soon for you. We are always here for you to offload whenever you feel the need.

Take care and wishing you a pain free day!

Mandy

16

Hi Mandy - it seems we have a few things in common, both having worked for the NHS and I used to work for the local CMHT in Skipton before moving to a GP practice as medical secretary! How strange! Like you say, it is kind of comforting to be living fairly close to someone else who has this awful condition and can understand how dreadful it is. Good luck with the decorating, I guess you're keeping busy before the MVD as well as sprucing everything up. I do hope things go well for you. I have heard of the James Cook hospIital (through work), I gather they have a very good reputation.

I guess I'm hoping that the MRI will show something very obvious that could maybe be dealt with, and I guess it is fortunate in a way for you that the arteries showed up on your scans (if anything about this disease could possibly be called 'fortunate'!) You sound to have had a bad time of it with the locum GP. I've only seen 2, both young and very pleasant but the first one was not as informed as my current one. The one I'm seeing regularly is not my own GP but I'm definitely going to 'adopt' her as mine if I can. She asked me when i first saw her after describing these weird electrical sensations on the right side of my face what I thought it was - so I told her I was convinced it was trigeminal neuralgia(after I had done a lot of googling), and she just nodded! I think the first GP thought maybe it was, but was not going to admit it!

Interesting you say you can't get on with any of the medications - Carbamazepine and Gabapentin made me really ill, but Pregabalin is certainly doing the trick with the pain (it's the side effects of being so dopey that I can't stand!) Like you, I just want my life back. I have 2 daughters and a grandson of 13 who lives with his mum in the Orkneys, so my poor husband is on his own trying to come to terms with the sudden change in me! Unfortunately he tends to avoid anything medical if he can! so it's not very easy for him (or me!) at present.

I'm so glad I found this website, it's really a godsend, as other people just don't understand it (no wonder!). Already the help and companionship I've found have been invaluable. It does help to hear other people's experiences too.

I am a little concerned about the MRI however, as I have another medical condition (alopecia areata), so after years of battling with it and having painful injections into the scalp to try and make the hair grow back, things got a lot worse and I lost all my hair. I've now had to wear a wig for roughly 3 years. Worse than that I then lost my eyebrows - and believe me it's not easy trying to put eyebrows on yourself first thing in the morning before work! So, I plucked up the courage and had semi-permanent makeup done in Leeds (which is very effective and trouble-free) - eyebrows and eyeliner (top and bottom lids). However, when I had it done I was given a sheet with instructions, which also said if I ever needed an MRI scan I would need to tell the radiologist as apparently it shows up on the MRI, and can cause some' tingling'. I understand there is some kind of metal involved in the makeup. I have informed the department, but will have to wait and see what happens when I go for the MRI - I hope it won't be too unpleasant and that they can carry out what they need to do. To cap it all (excuse the pun) I'll have to have the MRI minus the wig as that also contains some metal! Brilliant eh?

Anyway, I've also waffled on for long enough - hope the decorating is coming along nicely, best wishes,

Suzy

Mandy said:

Hi Suzy, I know what you mean about paying privately and it going against the grain, I felt exactly the same way as I worked in an intergrated mental health team (with the NHS TEWV) and i hated having to pay for something which we should get free. Like yourself, I just couldn't wait 3 months to be seen so we paid. I went to York as I was told that they had a good Neurology department and my neurologist was a lovely guy.

My GP was great with me and diagonosed me with TN straight away so I guess I was lucky but then I had to see a locum doctor who was horrible and told me to go back to the dentist, he also changed my medication against what the lead GP had prescribed for me! I came out in tears as I was in so much pain and at that point so confused. I had a conversation with Jackie and others on here who advised me to go back and see my own GP as I was uncontrolably upset, I did and he wasn't impressed with the outcome of the locum dr.

You sound like you've had a pretty bad deal so far so hopefully now you will receive the right treatment for your TN. I had an MRI in Dec but when I was referred to the Neurosurgeon he arranged a further MRI and then a few days later I had to go for an MRA circle of willis non-contrast scan. I suffer with bilateral TN and I guess lucky for me, arteries were seen on both sides pressing on the TN, on the right it's looped around it apparently so at least they can see what they will be working with......I hope!!!

It was suggested that I need the MVD's as I just can't tolerate any of the medications, had I been able to tolerate the meds then I'm not sure i would have agreed to the MVD's but I don't see that I have any other option if I want to function as i used to again. I feel this illness has wiped out my life at the moment, my daughter had her first baby last Dec and I was unable to help out as I was a total zombie at that time and couldn't be trusted with him, I've got two more granchildren coming, one in Nov and the next in Dec and I really want to be able to help out with these but I feel that having the MVD now, I may have to accept that i won't be able to, but we'll see, I'm not giving up hope ha ha!

I'm having my MVD at James Cook University Hospital in Middlesbrough and it seems as though there is a very good team who will be doing it so I'm trying not to worry about it to much. I've been very busy decorating the house, I think to keep my mind of it and I'm starting with the hallway tomorrow.....against my husbands request, but I just feel as though I need to do it!

Skipton isn't that far away from Thirsk, I don't think, I'm about 24 miles away from York, we're kind of in the middle of York and Middlesbrough. I think you're the closest member to me everyone else I've met have lived miles away, it's kind of comforting knowing there is someone with this condition closer to me, although I'm sorry that you do have it and wouldn't wish this on my worst enemy!

I hope your MRI goes well for you on Sunday and please let us know how you get on.

I feel as though I have waffeled on long enough so I'll go for now

Take care and keep in touch

Mandy : )

suzy1 said:

Hi Mandy, thanks for answering again. I live in Skipton, so i guess we're not so far away from each other. I don't know Thirsk - you're over near York I think? Paying privately goes against the grain with me really, as I'm a medical secretary within the NHS and I'm used to arranging referrals and sorting out the problems that crop up along the way for other people! However the week I had to chase up the NHS system to find out about being seen I was at my wits end. I was in so much pain and nobody was listening to me on the phone. At my GP practice the secretary was really helpful, however I was given the name of the neurologist in Leeds via the helpline for TNA after i phoned them for help when I was really upset. A guy from Devon (I think) rang me back- one of the TNA members who man the phone-line (before i even became a member, so I'm really grateful to them). I ended up talking to his secretary in Leeds (in tears) who put me in for an appointment the following Monday. He was lovely, and said he would arrange an urgent MRI and follow up on the NHS, so I have the MRI this Sunday morning! I guess I'm hoping it might show something up that can be fixed, but probably shouldn't get my hopes up! How did they decide that an MDV might be the correct treatment for you? Did you have an MRI done?

Mandy said:

Hi Suzy, like yourself, I had to pay privately to see a Neurologist as the waiting list was so long. I went to York and but after several apointments again paying privately, he referred me to a Neurosurgeon in Middlesbrough. Due to my non-tolerance of the meds I am having an MVD later this month. i'm not really looking forward to this as I know I have to go through the procedure twice as I suffer with TN on both sides (Arrrrrgh ha ha!).

I remember being in the same place as you are now, just wishing I could feel 'norma' again but time passed me by so quickly and here I am a year later feeling a lot better but still unsteady, memory loss and word searching is still problamatic for me, although it isn't as bad as it was initially but I've reached a stage where I'm not getting any better with it but nor am I getting worse....if that all makes sense to you! I think what I'm trying to say is you just have to go with it, unfortunately, it will be what it will be! You will go through many emotions with this illness including anger, I remember being very angry when I was first told that i would be losing my job, I wanted to scream and shout and cry as it wasn't fair that this was taking away everything I have ever worked for. I am very lucky though that I have a very supportive husband who has stood by me through all of this, it has really tested our relationship as we only got married in Aug 2011 and I came down with TN in Oct 2011, so what a honeymoon period we have had! Support fro people on here has also helped, especially through those days when you just feel so alone, angry etc!

My advice to you is to use this site as much and as often as you want as there is always someone there to give you answers, advice or just a listening ear, be it virtual one but from those who are in the same position and know just how you are felling (I know I've gone around the houses there but word block strikes again!!!).

Where abouts in North Yorkshire are you from, I'm in Thirsk, if you know where that is.....North Yorkshire is a large county to live in ha ha!

Hope you're feeling a little better today : )

17

Thanks Kari, I guess I'm going to have to get used to not remembering things at the moment. Like you say, it seems that the pain doesn't completely go away and you just have to decide how much medication you can deal with to control the pain, and hopefully not completely zombify you! It's a steep learning curve!

Suzy

Kari said:

SuZy some of the side affect don't go away, especially the remembering words thing. Just this morning I type out a gobble guck message to my boss, I read once over and do not notice how messed up the message was, totally embarrassing and frustrating at the same time. One thing to remember is sometimes medication will only bring your pain levels down bit the pain will not fully go away. It's a bit of a bummer I know. So you will need to figure out what pain level you can function on at some type of normal for you. I know that can be hard to figure out and decide on.


suzy1 said:

Thanks for your reply Kari. You've given me a couple of things to think about, like taking the meds with food to lower the side effects and possibly taking it twice daily instead - I had wondered about doing that but haven't experimented with it yet. Yes I did start off very slowly with this drug (50 mg twice daily, and increased fairly slowly to try to control the pain). I am fairly comfortable at this dose most of the time (but obviously avoid touching the right side of my face). I'm not sure what's going to happen when the cold weather arrives though, I've experienced horrific pain a few times from just a slight breeze on my face - I guess I'll have to stay indoors if that's anything to go by! At least this drug works and I am tolerating it, even if I can't remember words, names or where I've put things!

Suzy


Kari said:

Hi Suzy,
Were you put on on lower dose and then slowly built up to that dose, or did you start off at that dose? This is medication also needs to slowly build up in your body with a small dose. And then slowly go up to the right dose for you. I started at 100 mg for the day and was brought up to 400mg day slowly when I first started taking it. The zombie feeling only lasted for about a month then went away. With the expect of month and half this last spring I've been taking this for a year now. Other side effects still remain such as uncontrolled shaking at times, and edema that also comes and go. My pain doc is watching these side effects carefully though. As another poster has said how many times you take you dose may also be a factor. My neuro stated the higher doses stay in the body longer, which seems to be true for me. Maybe switch to 150mg twice a day may help lower the side effect for you? Also taking this with food will help lower the side effects. How long the zombie affect will last I think is depended upon each individual. If you are getting refiel from pain stick with it will get better sooner or later. Take care
18

Hi Toni - I'm really sorry to hear you're having such an awful time. I wish I could help. Hopefully you'll get some comfort from this website from the people who really understand what you're going through. Sorry to hear you can't get much help in Las Vegas, but hope the Baltimore hospital can help you. Do you take regular medication? I know what you mean about feeling grouchy - I do too!

Hope you have a more comfortable day. Keep chatting with everyone on here, I'm sure it will help.

Suzy

toni said:

I am afraid to lose my job. If I lose my job, I will end up homeless becasue there is noone else there for me or who can help me. I have been independent all my life and have worked hard for everything I have. Somedays I am in so much pain that I go to the emergency room because nothing helps and a quick fix is my only option. Though I live in Las Vegas, I am seeking alternative help in Baltimore Maryland at he John Hopkins Neurosurgery. Las Vegas doesnt take much serious. The last time I was at the emergency room in pain they gave me some pain meds and my blood pressure was 250/133 and kept climbing. By the time they released me, it was 211/130. I continue to work, but I see myself as a very grouchy person, irritated and less tolerant of other peoples problems. I know eventually, I may lose my job. So I will keep seeking a resolution for my pain and pray that it will be soon.

19

Hi Suzy,

Thanks for your reply, you sure do sound as though you've gone through a lot in the past without havin this sprung on you now to add to things, I guess you ask the same questions as many of us do....why me, surely I can't have this, this is something which happens to others who we don't know......well I guess we're now one of those others that other people don't know ha ha! (although I know it isn't funny! I wrote to Daybreak a couple of months ago one moring when i was feeling so frustrated with the condition and I'd felt that they were covering so much about body dismorphia and anoxia etc, I know these are important but so is this condition and nobody recognises it (i know I'd never heard of it before i was diagnosed with it), anyway i received a lovely personal reply saying that if Dr Hilarys team decide to feature a story on it then they might contact me again.....I haven't heard anything since so I guess i won't either ha ha!

When i worked for the CMHT, I had a lady on my caseload (I'm a social worker but worked alongside, doing the same job as the CPN's) who pulled out her hair and her eyebrows, you can imagine when she walked in with this lovely head of hair, fashionable hairstyle, I thought that it can't have been that bad. We were sat talking when she said very tearfully that she can't stop pulling her hair out and that she done this from a very young age, I was confused as her hair was lovely, she then went to grab her hair, my heart fell to my stomach and i thought please don't do it in front of me, and as she pulled at her hair, off it came, it was a wig and she was totally bald with just a few whispy bits left. I couldn't believe my eyes that someone had done this to herself but it was her way of coping, she was told that because she had done it for so ;ong that her hair would never grow back, I really felt for her as underneath she was a lovely woman, just very badly damaged! I've kin of lost my thread now and the point I was trying to make, (meds for you) but hopefully you'll work out the underlying message!!!!

I used to suffer with alopecia in patches when I got stressed, the first time was in my school days and the GP treated me initially for ringworm, but the patches just kept on getting bigger and bigger, I've not had this hair loss for years now but my eldest daughter has followed suit and she gets it a lot worse than I ever did, she's coming up 28 in dec. I have 3 children, 2 girls and a boy, I have 1 grandson, Jack, who I absolutely adore, he's 11 months. I'm not sure if I've said but I have another 2 grandsons coming, one next month, and Jacks baby brother will be with us in Dec, so Carrie will have her hands full!

I got a call from Mr Prasads secretary yesterday informing me that my surgery has been schedueled for next wed 31st, I broke down after the call, the reality of it setting in i think, although i knew it was coming, it didn't make things easier for me but i do know it is the right decision for me especially if I want to ever function as I did pre-TN!

The decoratings coming on quite well now, the walls are all now painted and I only have the glossing to do now, then to go and chose a new carpet, my parents treat as I wasn't going to get one, so that was a nice suprise to end the day on yesterday!

Try not to worry too much about your MRI, they'll take it into consideration and hopefully the tingling will only be a slight tinggling for you but please do let me know how you get on. I;m going to the lakes on Sunday, coming back on Monday (a belated anniversary present from my eldest daughter) but I'll try and get on the site on Monday when I get back and will def get on it before my surgery on Wed!

I'm a bit like you I can, at times, waffle on forever, so I should go now as i've probably bored you silly by now. But just for the record you can waffle on to me and others on here for as long as you want, no-one minds abit like buzzby used to say ha ha! (I hope you can remember the buzzby adverts otherwise you won't get that!)

Take care and fingers crossed for Sunday for you, I will be thinking of you!

Mandy : )

suzy1 said:

Hi Mandy - it seems we have a few things in common, both having worked for the NHS and I used to work for the local CMHT in Skipton before moving to a GP practice as medical secretary! How strange! Like you say, it is kind of comforting to be living fairly close to someone else who has this awful condition and can understand how dreadful it is. Good luck with the decorating, I guess you're keeping busy before the MVD as well as sprucing everything up. I do hope things go well for you. I have heard of the James Cook hospIital (through work), I gather they have a very good reputation.

I guess I'm hoping that the MRI will show something very obvious that could maybe be dealt with, and I guess it is fortunate in a way for you that the arteries showed up on your scans (if anything about this disease could possibly be called 'fortunate'!) You sound to have had a bad time of it with the locum GP. I've only seen 2, both young and very pleasant but the first one was not as informed as my current one. The one I'm seeing regularly is not my own GP but I'm definitely going to 'adopt' her as mine if I can. She asked me when i first saw her after describing these weird electrical sensations on the right side of my face what I thought it was - so I told her I was convinced it was trigeminal neuralgia(after I had done a lot of googling), and she just nodded! I think the first GP thought maybe it was, but was not going to admit it!

Interesting you say you can't get on with any of the medications - Carbamazepine and Gabapentin made me really ill, but Pregabalin is certainly doing the trick with the pain (it's the side effects of being so dopey that I can't stand!) Like you, I just want my life back. I have 2 daughters and a grandson of 13 who lives with his mum in the Orkneys, so my poor husband is on his own trying to come to terms with the sudden change in me! Unfortunately he tends to avoid anything medical if he can! so it's not very easy for him (or me!) at present.

I'm so glad I found this website, it's really a godsend, as other people just don't understand it (no wonder!). Already the help and companionship I've found have been invaluable. It does help to hear other people's experiences too.

I am a little concerned about the MRI however, as I have another medical condition (alopecia areata), so after years of battling with it and having painful injections into the scalp to try and make the hair grow back, things got a lot worse and I lost all my hair. I've now had to wear a wig for roughly 3 years. Worse than that I then lost my eyebrows - and believe me it's not easy trying to put eyebrows on yourself first thing in the morning before work! So, I plucked up the courage and had semi-permanent makeup done in Leeds (which is very effective and trouble-free) - eyebrows and eyeliner (top and bottom lids). However, when I had it done I was given a sheet with instructions, which also said if I ever needed an MRI scan I would need to tell the radiologist as apparently it shows up on the MRI, and can cause some' tingling'. I understand there is some kind of metal involved in the makeup. I have informed the department, but will have to wait and see what happens when I go for the MRI - I hope it won't be too unpleasant and that they can carry out what they need to do. To cap it all (excuse the pun) I'll have to have the MRI minus the wig as that also contains some metal! Brilliant eh?

Anyway, I've also waffled on for long enough - hope the decorating is coming along nicely, best wishes,

Suzy

Mandy said:

Hi Suzy, I know what you mean about paying privately and it going against the grain, I felt exactly the same way as I worked in an intergrated mental health team (with the NHS TEWV) and i hated having to pay for something which we should get free. Like yourself, I just couldn't wait 3 months to be seen so we paid. I went to York as I was told that they had a good Neurology department and my neurologist was a lovely guy.

My GP was great with me and diagonosed me with TN straight away so I guess I was lucky but then I had to see a locum doctor who was horrible and told me to go back to the dentist, he also changed my medication against what the lead GP had prescribed for me! I came out in tears as I was in so much pain and at that point so confused. I had a conversation with Jackie and others on here who advised me to go back and see my own GP as I was uncontrolably upset, I did and he wasn't impressed with the outcome of the locum dr.

You sound like you've had a pretty bad deal so far so hopefully now you will receive the right treatment for your TN. I had an MRI in Dec but when I was referred to the Neurosurgeon he arranged a further MRI and then a few days later I had to go for an MRA circle of willis non-contrast scan. I suffer with bilateral TN and I guess lucky for me, arteries were seen on both sides pressing on the TN, on the right it's looped around it apparently so at least they can see what they will be working with......I hope!!!

It was suggested that I need the MVD's as I just can't tolerate any of the medications, had I been able to tolerate the meds then I'm not sure i would have agreed to the MVD's but I don't see that I have any other option if I want to function as i used to again. I feel this illness has wiped out my life at the moment, my daughter had her first baby last Dec and I was unable to help out as I was a total zombie at that time and couldn't be trusted with him, I've got two more granchildren coming, one in Nov and the next in Dec and I really want to be able to help out with these but I feel that having the MVD now, I may have to accept that i won't be able to, but we'll see, I'm not giving up hope ha ha!

I'm having my MVD at James Cook University Hospital in Middlesbrough and it seems as though there is a very good team who will be doing it so I'm trying not to worry about it to much. I've been very busy decorating the house, I think to keep my mind of it and I'm starting with the hallway tomorrow.....against my husbands request, but I just feel as though I need to do it!

Skipton isn't that far away from Thirsk, I don't think, I'm about 24 miles away from York, we're kind of in the middle of York and Middlesbrough. I think you're the closest member to me everyone else I've met have lived miles away, it's kind of comforting knowing there is someone with this condition closer to me, although I'm sorry that you do have it and wouldn't wish this on my worst enemy!

I hope your MRI goes well for you on Sunday and please let us know how you get on.

I feel as though I have waffeled on long enough so I'll go for now

Take care and keep in touch

Mandy : )

suzy1 said:

Hi Mandy, thanks for answering again. I live in Skipton, so i guess we're not so far away from each other. I don't know Thirsk - you're over near York I think? Paying privately goes against the grain with me really, as I'm a medical secretary within the NHS and I'm used to arranging referrals and sorting out the problems that crop up along the way for other people! However the week I had to chase up the NHS system to find out about being seen I was at my wits end. I was in so much pain and nobody was listening to me on the phone. At my GP practice the secretary was really helpful, however I was given the name of the neurologist in Leeds via the helpline for TNA after i phoned them for help when I was really upset. A guy from Devon (I think) rang me back- one of the TNA members who man the phone-line (before i even became a member, so I'm really grateful to them). I ended up talking to his secretary in Leeds (in tears) who put me in for an appointment the following Monday. He was lovely, and said he would arrange an urgent MRI and follow up on the NHS, so I have the MRI this Sunday morning! I guess I'm hoping it might show something up that can be fixed, but probably shouldn't get my hopes up! How did they decide that an MDV might be the correct treatment for you? Did you have an MRI done?

Mandy said:

Hi Suzy, like yourself, I had to pay privately to see a Neurologist as the waiting list was so long. I went to York and but after several apointments again paying privately, he referred me to a Neurosurgeon in Middlesbrough. Due to my non-tolerance of the meds I am having an MVD later this month. i'm not really looking forward to this as I know I have to go through the procedure twice as I suffer with TN on both sides (Arrrrrgh ha ha!).

I remember being in the same place as you are now, just wishing I could feel 'norma' again but time passed me by so quickly and here I am a year later feeling a lot better but still unsteady, memory loss and word searching is still problamatic for me, although it isn't as bad as it was initially but I've reached a stage where I'm not getting any better with it but nor am I getting worse....if that all makes sense to you! I think what I'm trying to say is you just have to go with it, unfortunately, it will be what it will be! You will go through many emotions with this illness including anger, I remember being very angry when I was first told that i would be losing my job, I wanted to scream and shout and cry as it wasn't fair that this was taking away everything I have ever worked for. I am very lucky though that I have a very supportive husband who has stood by me through all of this, it has really tested our relationship as we only got married in Aug 2011 and I came down with TN in Oct 2011, so what a honeymoon period we have had! Support fro people on here has also helped, especially through those days when you just feel so alone, angry etc!

My advice to you is to use this site as much and as often as you want as there is always someone there to give you answers, advice or just a listening ear, be it virtual one but from those who are in the same position and know just how you are felling (I know I've gone around the houses there but word block strikes again!!!).

Where abouts in North Yorkshire are you from, I'm in Thirsk, if you know where that is.....North Yorkshire is a large county to live in ha ha!

Hope you're feeling a little better today : )

20

Hi Mandy - you've got your date at last! Scary but exciting too (hope everything works out well for you). At least you've got your decorating done! And you have the weekend in the Lakes to look forward to - hope you have a lovely time. Where abouts are you staying? We tend to go to Keswick quite a lot (we normally do a fair bit of walking), we love it up there. Will write more tomorrow (I'm flagging now as I didn't sleep last night and have been busy today (had a better day all round!).

Suzy
Mandy said:

Hi Suzy,

Thanks for your reply, you sure do sound as though you've gone through a lot in the past without havin this sprung on you now to add to things, I guess you ask the same questions as many of us do....why me, surely I can't have this, this is something which happens to others who we don't know......well I guess we're now one of those others that other people don't know ha ha! (although I know it isn't funny! I wrote to Daybreak a couple of months ago one moring when i was feeling so frustrated with the condition and I'd felt that they were covering so much about body dismorphia and anoxia etc, I know these are important but so is this condition and nobody recognises it (i know I'd never heard of it before i was diagnosed with it), anyway i received a lovely personal reply saying that if Dr Hilarys team decide to feature a story on it then they might contact me again.....I haven't heard anything since so I guess i won't either ha ha!

When i worked for the CMHT, I had a lady on my caseload (I'm a social worker but worked alongside, doing the same job as the CPN's) who pulled out her hair and her eyebrows, you can imagine when she walked in with this lovely head of hair, fashionable hairstyle, I thought that it can't have been that bad. We were sat talking when she said very tearfully that she can't stop pulling her hair out and that she done this from a very young age, I was confused as her hair was lovely, she then went to grab her hair, my heart fell to my stomach and i thought please don't do it in front of me, and as she pulled at her hair, off it came, it was a wig and she was totally bald with just a few whispy bits left. I couldn't believe my eyes that someone had done this to herself but it was her way of coping, she was told that because she had done it for so ;ong that her hair would never grow back, I really felt for her as underneath she was a lovely woman, just very badly damaged! I've kin of lost my thread now and the point I was trying to make, (meds for you) but hopefully you'll work out the underlying message!!!!

I used to suffer with alopecia in patches when I got stressed, the first time was in my school days and the GP treated me initially for ringworm, but the patches just kept on getting bigger and bigger, I've not had this hair loss for years now but my eldest daughter has followed suit and she gets it a lot worse than I ever did, she's coming up 28 in dec. I have 3 children, 2 girls and a boy, I have 1 grandson, Jack, who I absolutely adore, he's 11 months. I'm not sure if I've said but I have another 2 grandsons coming, one next month, and Jacks baby brother will be with us in Dec, so Carrie will have her hands full!

I got a call from Mr Prasads secretary yesterday informing me that my surgery has been schedueled for next wed 31st, I broke down after the call, the reality of it setting in i think, although i knew it was coming, it didn't make things easier for me but i do know it is the right decision for me especially if I want to ever function as I did pre-TN!

The decoratings coming on quite well now, the walls are all now painted and I only have the glossing to do now, then to go and chose a new carpet, my parents treat as I wasn't going to get one, so that was a nice suprise to end the day on yesterday!

Try not to worry too much about your MRI, they'll take it into consideration and hopefully the tingling will only be a slight tinggling for you but please do let me know how you get on. I;m going to the lakes on Sunday, coming back on Monday (a belated anniversary present from my eldest daughter) but I'll try and get on the site on Monday when I get back and will def get on it before my surgery on Wed!

I'm a bit like you I can, at times, waffle on forever, so I should go now as i've probably bored you silly by now. But just for the record you can waffle on to me and others on here for as long as you want, no-one minds abit like buzzby used to say ha ha! (I hope you can remember the buzzby adverts otherwise you won't get that!)

Take care and fingers crossed for Sunday for you, I will be thinking of you!

Mandy : )

suzy1 said:

Hi Mandy - it seems we have a few things in common, both having worked for the NHS and I used to work for the local CMHT in Skipton before moving to a GP practice as medical secretary! How strange! Like you say, it is kind of comforting to be living fairly close to someone else who has this awful condition and can understand how dreadful it is. Good luck with the decorating, I guess you're keeping busy before the MVD as well as sprucing everything up. I do hope things go well for you. I have heard of the James Cook hospIital (through work), I gather they have a very good reputation.

I guess I'm hoping that the MRI will show something very obvious that could maybe be dealt with, and I guess it is fortunate in a way for you that the arteries showed up on your scans (if anything about this disease could possibly be called 'fortunate'!) You sound to have had a bad time of it with the locum GP. I've only seen 2, both young and very pleasant but the first one was not as informed as my current one. The one I'm seeing regularly is not my own GP but I'm definitely going to 'adopt' her as mine if I can. She asked me when i first saw her after describing these weird electrical sensations on the right side of my face what I thought it was - so I told her I was convinced it was trigeminal neuralgia(after I had done a lot of googling), and she just nodded! I think the first GP thought maybe it was, but was not going to admit it!

Interesting you say you can't get on with any of the medications - Carbamazepine and Gabapentin made me really ill, but Pregabalin is certainly doing the trick with the pain (it's the side effects of being so dopey that I can't stand!) Like you, I just want my life back. I have 2 daughters and a grandson of 13 who lives with his mum in the Orkneys, so my poor husband is on his own trying to come to terms with the sudden change in me! Unfortunately he tends to avoid anything medical if he can! so it's not very easy for him (or me!) at present.

I'm so glad I found this website, it's really a godsend, as other people just don't understand it (no wonder!). Already the help and companionship I've found have been invaluable. It does help to hear other people's experiences too.

I am a little concerned about the MRI however, as I have another medical condition (alopecia areata), so after years of battling with it and having painful injections into the scalp to try and make the hair grow back, things got a lot worse and I lost all my hair. I've now had to wear a wig for roughly 3 years. Worse than that I then lost my eyebrows - and believe me it's not easy trying to put eyebrows on yourself first thing in the morning before work! So, I plucked up the courage and had semi-permanent makeup done in Leeds (which is very effective and trouble-free) - eyebrows and eyeliner (top and bottom lids). However, when I had it done I was given a sheet with instructions, which also said if I ever needed an MRI scan I would need to tell the radiologist as apparently it shows up on the MRI, and can cause some' tingling'. I understand there is some kind of metal involved in the makeup. I have informed the department, but will have to wait and see what happens when I go for the MRI - I hope it won't be too unpleasant and that they can carry out what they need to do. To cap it all (excuse the pun) I'll have to have the MRI minus the wig as that also contains some metal! Brilliant eh?

Anyway, I've also waffled on for long enough - hope the decorating is coming along nicely, best wishes,

Suzy

Mandy said:

Hi Suzy, I know what you mean about paying privately and it going against the grain, I felt exactly the same way as I worked in an intergrated mental health team (with the NHS TEWV) and i hated having to pay for something which we should get free. Like yourself, I just couldn't wait 3 months to be seen so we paid. I went to York as I was told that they had a good Neurology department and my neurologist was a lovely guy.

My GP was great with me and diagonosed me with TN straight away so I guess I was lucky but then I had to see a locum doctor who was horrible and told me to go back to the dentist, he also changed my medication against what the lead GP had prescribed for me! I came out in tears as I was in so much pain and at that point so confused. I had a conversation with Jackie and others on here who advised me to go back and see my own GP as I was uncontrolably upset, I did and he wasn't impressed with the outcome of the locum dr.

You sound like you've had a pretty bad deal so far so hopefully now you will receive the right treatment for your TN. I had an MRI in Dec but when I was referred to the Neurosurgeon he arranged a further MRI and then a few days later I had to go for an MRA circle of willis non-contrast scan. I suffer with bilateral TN and I guess lucky for me, arteries were seen on both sides pressing on the TN, on the right it's looped around it apparently so at least they can see what they will be working with......I hope!!!

It was suggested that I need the MVD's as I just can't tolerate any of the medications, had I been able to tolerate the meds then I'm not sure i would have agreed to the MVD's but I don't see that I have any other option if I want to function as i used to again. I feel this illness has wiped out my life at the moment, my daughter had her first baby last Dec and I was unable to help out as I was a total zombie at that time and couldn't be trusted with him, I've got two more granchildren coming, one in Nov and the next in Dec and I really want to be able to help out with these but I feel that having the MVD now, I may have to accept that i won't be able to, but we'll see, I'm not giving up hope ha ha!

I'm having my MVD at James Cook University Hospital in Middlesbrough and it seems as though there is a very good team who will be doing it so I'm trying not to worry about it to much. I've been very busy decorating the house, I think to keep my mind of it and I'm starting with the hallway tomorrow.....against my husbands request, but I just feel as though I need to do it!

Skipton isn't that far away from Thirsk, I don't think, I'm about 24 miles away from York, we're kind of in the middle of York and Middlesbrough. I think you're the closest member to me everyone else I've met have lived miles away, it's kind of comforting knowing there is someone with this condition closer to me, although I'm sorry that you do have it and wouldn't wish this on my worst enemy!

I hope your MRI goes well for you on Sunday and please let us know how you get on.

I feel as though I have waffeled on long enough so I'll go for now

Take care and keep in touch

Mandy : )

suzy1 said:

Hi Mandy, thanks for answering again. I live in Skipton, so i guess we're not so far away from each other. I don't know Thirsk - you're over near York I think? Paying privately goes against the grain with me really, as I'm a medical secretary within the NHS and I'm used to arranging referrals and sorting out the problems that crop up along the way for other people! However the week I had to chase up the NHS system to find out about being seen I was at my wits end. I was in so much pain and nobody was listening to me on the phone. At my GP practice the secretary was really helpful, however I was given the name of the neurologist in Leeds via the helpline for TNA after i phoned them for help when I was really upset. A guy from Devon (I think) rang me back- one of the TNA members who man the phone-line (before i even became a member, so I'm really grateful to them). I ended up talking to his secretary in Leeds (in tears) who put me in for an appointment the following Monday. He was lovely, and said he would arrange an urgent MRI and follow up on the NHS, so I have the MRI this Sunday morning! I guess I'm hoping it might show something up that can be fixed, but probably shouldn't get my hopes up! How did they decide that an MDV might be the correct treatment for you? Did you have an MRI done?

Mandy said:

Hi Suzy, like yourself, I had to pay privately to see a Neurologist as the waiting list was so long. I went to York and but after several apointments again paying privately, he referred me to a Neurosurgeon in Middlesbrough. Due to my non-tolerance of the meds I am having an MVD later this month. i'm not really looking forward to this as I know I have to go through the procedure twice as I suffer with TN on both sides (Arrrrrgh ha ha!).

I remember being in the same place as you are now, just wishing I could feel 'norma' again but time passed me by so quickly and here I am a year later feeling a lot better but still unsteady, memory loss and word searching is still problamatic for me, although it isn't as bad as it was initially but I've reached a stage where I'm not getting any better with it but nor am I getting worse....if that all makes sense to you! I think what I'm trying to say is you just have to go with it, unfortunately, it will be what it will be! You will go through many emotions with this illness including anger, I remember being very angry when I was first told that i would be losing my job, I wanted to scream and shout and cry as it wasn't fair that this was taking away everything I have ever worked for. I am very lucky though that I have a very supportive husband who has stood by me through all of this, it has really tested our relationship as we only got married in Aug 2011 and I came down with TN in Oct 2011, so what a honeymoon period we have had! Support fro people on here has also helped, especially through those days when you just feel so alone, angry etc!

My advice to you is to use this site as much and as often as you want as there is always someone there to give you answers, advice or just a listening ear, be it virtual one but from those who are in the same position and know just how you are felling (I know I've gone around the houses there but word block strikes again!!!).

Where abouts in North Yorkshire are you from, I'm in Thirsk, if you know where that is.....North Yorkshire is a large county to live in ha ha!

Hope you're feeling a little better today : )