first appointment with neurology today (and last) and i think they dragged someone off the street and stuck a 'neurologist' badge on him. no use whatsoever, he could see i was so stressed by me crying my heart out and saying if i take one more pill i will take the lot, my feet and ankles are swollen and i can't get my boots on, i've gone from size 14 to an 18, i shouldn't even bee driving, i drop things, my words come out jumbled and all the rest of it. told him i have it on both sides and guess what he said? theres nothing i can do just keep taking the tablets. yes, really, thats what he said (in between words that i could understand as he could hardly speak a word of english). i've absolutely had enough of this. my poor son is going through his exams and he doesn't know if he will come home to find me alive or dead, i can't handle this. my life has stopped, i see people walking past my house with their dogs, my poor dog hasn't been out for months, the grass at the front is 3 feet tall, i just cannot go out, my life is just nothing. i can't take this anymore.
I dont know where you are from fed-up but I am from Ireland and when I wasnt happy I rang my Neurologist secetary and voiced my opinion sweetly. I have been able to get her to talk to him for me and get replys back. I dont know if he likes this but I dont care. as they say, if you make yourself heard , you will be heard. go back to your gp and tell him what happened today and tell him you need more options. Dont give up. We are all here together.
Hello Fed-up, I am sorry for what you are going through. You need to insist on seeing a different Neurologist because the first one obviously did not offer you any help at all. Of course there are various interventions that are possible such as glycerol injection or MVD surgery etc. Also I don't know what tabs you are taking, I started by taking tegretol but they made me sick so then I took Lyrica and now I take Neurontin as well. These were all prescribed by my doctor. I do know how hard it is with the pain and wondering "why me?", but don't despair, there is always hope. I have tried Acupuncture and Reiki. These are some alternatives, I also intend trying faith healing as I know cases where this was successful also.
Prayer can be very powerful.
It seems to be a matter of trying many things until you get the best one for you.
Best wishes
Dear fed up,
Go out today and buy some B complex. If you are on neurontin (gabbapentin) wean yourself off of it. Try taking a couple of adult aspirin a day. If you are on an anti convulsive drug, they have bad side affects including depression and suicidal thoughts. Ask your GP for some OxyContin or morphine. I feel so badly for you and am very concerned about you. Be more proactive with your GP and let him/her know how you are feeling. Call a chiropractor today and set up an appointment. They have been a great help for me. If that doesn't give you some relief next try acupuncture. Hang in there and let us know how you are doing. We are all here to support you.
Patti
Dear Fed up
Wherever you are from go and ask for a 2nd opinion. If the medication is making you ill also ask about surgery. I had a microvascular decompression in March after suffering bouts of pain on and off for 4 years and trying various meds.I cannot believe the difference it has made to my life. I was taking Verapamil, Lyrica and blood pressure tablets along with water tablets for swollen feet and legs, worsened by the medication I was taking for neuralgia. The surgery was not half as bad as I was warned about and after 3 days I was back home. A little delicate for about 5 weeks compared to what I used to be (but of course Im nearly 60 so that could be age related also) My med have almost halved now and I am being weaned off gradually so that my system doesnt go into shock. I am pain free apart from a very dull throb occasionally. I have my life back. My surgeon is wonderful. Mr Cruikshank, Q.E. hospital, Birmingham. UK. I have a follow up appt next week. I recommend this to anyone who feels it is for them. Good luck
Hi Fed-up, sorry you are feeling really down. I agree with all of the above.
First and foremost back to your Drs and request a 2nd opinion from a Neurologist.
When I went to see mine she asked me all sorts of questions, asked about my medication and what I had already been on that didn't work. She then got a prong and put it on each side of my face I can't remember what she asked me. But the only thing I didnt like was when she said I could always stop taking my meds to see if the Neuralgia was still there. She gave me a list of tablets to try and see if each one didn't work. I told her I had tried all of them except one.
Nowhere whilst I've had treatment over the last twenty years was any operation suggested to me other than the one where they drill a hole in the skull and place a piece of felt between the Nerves. But unfortunately there are risks. So I declined.
The lists of medication you're on maybe reacting against one another. Your swollen ankles could also be a side effect from one of your tablets.
All I can suggest is you put one foot forward and then follow it. Don't worry about the housework/garden concentrate on yourself and children first and before you know it you'll soon be back on track.
But definitely, definitely go back to your GP for a 2nd Neurologist opinion. If still no joy, go back and they'll soon pay attention. You should be on meds that are suitable for you. Tegretol is the best if you can tolerate the nausea etc for a short while, after that you won't know your even on them only at night when it catches up and you feel drowsy.
Good luck and keep in touch and let us know how you get on.
Best regards
Gloriana
he said MVD is out of the question and that in rare cases it could be done! im at my doctors on monday and he is very good. i don't think he will be very pleased about the neuro either. there is no way i having this pain for long, on both sides. this neuro didn't even bother sending me for an MRI with contrast, he said the ordinary MRI is sufficiant enough!! jesus, only sufferers know about this pain and none else i can't believe he thinks i should put up with this pain for the rest of my life on both sides? i want the MVD done, i don't want all the other treatments done which we all know it could make it all worse.
the way my son speaks to me makes me want to top myself even more quicker. i just don't know what to do anymore, im just a mess, i can't stop crying i can't go out.besides the wind bringing it on it just comes on its own.
Ho Gloriana no-one could have been more scared than me but I had had enough of the pain and was wanting my life back. I am not super fit I am obese and 59 years old so even more risks. But thank God I made it and I am so glad for the skill of the surgeon. It may come back but at the moment the only side affect I have is a numb cheek like you get from dental block. Its a risk I am glad I took. Pain free for 10 weeks, cannot explain how that feels.
im in the UK and im on 2100mg of gabapentin and 2100mg of oxcarbazepine and the heuro just wanted me to carry on, even though my feet are swollen, basically he never listened to anything i said. i said if i take one more pill i'll take them all and he couldn't be bothered, i just can't believe how useless he was. im at my doctors on monday. i've just had enough.
I saw the neurologist for the first times yesterday. Similar to you, I have out weight on, had three different types of tablets, and now have the pain in both sides of my face. I was told that it was not TN! I am to have a repeat MRI in the next two weeks followed by a follow up appointment in 4 weeks with the neurologist. I was told if this MRI was clear then it wasn't anything sinister and I got the impression I was going to be a medical question mark, who would have to cope! I was taken off my meds too.
taken off your meds? jesus, how can they be so stupid and ignorant? its not them who are going through this. i can't believe what they have done to you. what are you going to do?
You need to get a different neurologist. Don't let this last appointment make you so depressed. TN really does suck, but there are other treatments. There's a doctor out there that will help you. You just need to find her/him.
We care about you fed-up, and we understand like no-one else can. My first neurolgist was useless too. The second one was better but mainly because he agreed to let me have what i wanted but i had to ask for it. i asked for an MRI with contrast and then i asked for a referal to a surgeon, he did not seem to think of it. The surgeon suggested several things to try before surgery (which surprised me) because he said surgery was a last resort. He also said he did not rule anyone out because of age but only their general health. After about two visits he suggested surgery and i agreed. He also suggested things i could do before then to make myself fitter for surgery btw, which i am doing. my op is on the 25th. Dont give up-get busy when you feel you can, get appointments, try everything and anything. Ending things really is the end for you and for your son but while there is life there is still the possibility of making things better. You can do this. Keep talking to us. We care about you.
Dear fed-up
So sorry to read about your situation. Yes, you are clearly at your wits end and seem to have no where to turn to!
Something has to change that will give you some hope and, above all, a plan to deal with your ailments, which are clearly critical.
Firstly, like most of your friends on Patient, I feel you must 'start again'! Start by making a double appointment with your GP and let her/him reassess your situation from scratch. Forget the neurologist for a bit, you need a different form of support to get you through this terrible period of despair - perhaps some counseling to go alongside your medical treatment that your GP will want to review. I was once told that 'Nothing changes unless something is changed!'. Start again, a new strategy that brings fresh ideas and hope with it.
Take care and use the many people that clearly care about you on Patient line. I live in Kent, England. Colin x
thanks everyone, i really appreciate it, i am thinking of writing to the hospital and complaining about the neuro, he clearly shouldn't be in that job. thankfully i have a good doctor, im seeing him on monday and i don't think he will be impressed either. i have this on both sides and i have my heart set on MVD to at least give me some relief while the other side is going, i don't want the injections and stuff, i don't want to be meddled with and having it not working or getting worse, i shall endup ripping the damn nerve out myself! i'll see what happens at the docs on monday, but its all waiting around and wasting time!, il let you all know how it goes.
I am going to try the next four weeks without the meds, so that when i see the neurologist again, I can explain how I am more forcefully! I am hitting the paracetomol though! Awaiting the MRI scan which will hopefully get me a diagnosis. I think neuro problems don;t follow text books so people find it difficult!
Hi again
Firstly, good luck with your visit to the GP. I'm so pleased that you have a good relationship with them. That's a huge plus!
Personally, I wouldn't waste my precious energy making an official complaint against the neurologist. I'd focus on all the bits that are working for you. You need some positive stuff going for you, and although complaining may bring some satisfaction, this might not be the right to get embroiled in all that. Hope that doesn't sound like I'm preaching at you - that's simply my view.
Good luck, fed-up! Colin x
I agree with Colin on not wasting your time making an official complaint against the Neurologist. However, nothing wrong with letting your GP know. Maybe they will not refer anyone else to that particular one. Use all your energy on pushing your own case forward. Energy is a bit like petrol, there is only so much in the tank so use yours you get help
hi all
i just don't know where to turn, im on 2100mg of gabapentin and 2100mg of oxcarbazepine and have pain coming through that now, whats next? everytime my dose is put up it gives relief for a week or 2 and then the pain comes back. i can't keep up the dose cus when i get to the max dose whats left to try? mine must me a fantastic case of TN if the pain keeps coming back on such high doses!!
i'd also like to know what is a successful 'candidate' for MVD as that useless neuro said only in exceptional cases they do MVD, and i know for a fact he's lying! i would have thought my having it on both sides was exceptional!!!!!! all this waiting for appointments for months on end, its ok if you have the money to go private!
Hi fed-up.
have you seen your GP yet? You said that they were good and you work well together. What is their take on the situation? Complaining about the neurologist doesn't sound the way forward. Have you fedback all your experiences and concerns to the GP? They can refer you elsewhere.
You may well be right about the financial side of things. It could be that it comes down to money but you really do sound like a priority! Colin x