I have an appointment for the Neurologist. it's 11 and a half weeks away. I went back to the doctor. I don;t have any tablets to try and control the pain (I've been given Tramadol and Codine to cope with pain attacks) and so I've been having a hard time.
I'm still doing my maths course, but I'm now struggling. I was on a school placement this week, and I had to leave one lesson because of the pain. That wasn't so bad, but when I'm on my teacher training course, I won't be able to do that.
But it's such a long wait.
My doctor has been so supportive and amazing. It's not his fault. But it's just really irritating.
Hi, I just wanted to say that I totally understand your frustration. In the early days of this TN showing up at my door, my regular doc said he thought it was TN, but wanted a neuro to confirm from exam and MRI. There was a 3 month wait for the MRI and then the appt. This month marks the 10th year for this pain. It was in June that the diagnosis came after the MRI. Appartently, they wanted to wait 90 days to take the MRI to be able to see if it was MS. Geeze! I hated those months! And, they gave me codine and advil to use for pain!! Are you kidding me! After a few weeks I went back to my regular doc and said, look, I'm a mom, I run a thriving business and cannot have pain interrupting my day. What can I try to help with the pain? The PA and doc talked a long time. The PA wanted to use Tegretol, but the doc wanted to use Neurontin because it is so much more gentler to the system. So I left with a script for Neurontin at a very low dose. It helped. Back then the TN1 pain episodes where sparse throughout the day. Maybe your doc could give you something that would work for you while you wait to see the neuro? I marked down all of my symptoms before the meds and how the pain changed after the meds so that I could help the neuro understand the symptoms clearly. This pain is too hard to deal with w/o meds that at least help somewhat! One of the meds I use each day is Tramadol 100mg 2x p/day. It is helpful, but Neurontin is the key for pain relief in the pain that I experience. I'm praying for a good road to relief for you and that your studies continue going well, regardless of the situation. Take care of yourself. It helps so much to tend to your rest and care :-)
11.5 weeks is too long for you to suffer with this Amber. Why not go to the Face Pain Info tab, look up alternate meds to the Tegretol you had a reaction to, print it off and go see your GP. He /she can prescribe for you in the interim period until you see your neuro. Like Lynda I have found good pain relief with Gabapentin and it is kinder to me than Tegretol, but we all are different. All of the meds we take can have some side effects in the early days. Unless they are extreme we should try and stick it out for a while, when we climb the hurdle of the early days we often level out. Then life becomes more bearable. I feel for you, you have some difficult life circumstances just now.
I've been allergic to every tablet they have tried to give me so far. I was given Carbagen (which is Tegratol I think). Also, I was diagnosed with a Tumor about 8 years ago and that was never followed up. And I'm only 28.
I'm having such a hard time at the moment, because I really just want to get stuck in to teaching. I've found a vocation, and I don't want any problems with ill health to mess it up for me.
I'm not making much sense at the moment. Sorry. I am tired. And feeling emotional.
No pressure Amber, severe pain messes with our heads! When you feel better, maybe tomorrow, have a think if you were allergic or had side effects which were challenging, there is a difference. My pain is fairly well managed allowing me to work and live a reasonably normal life. But I have to say I have had some side effects to every medication I have been prescribed for my TN whether effective in pain relief or not. Without fail I acclimated within a few weeks. It’s tough but ultimately it gave me my life back.
Jackie, I do appreciate what you are saying, but it was an allergic reaction. It was even listen on my records as being a tablet I have an allergy to but they still prescribed it (that's why I started seeing a different doctor). I had a rash that burned like sunburn, a fever, and an aversion to light as well as making my glands up. It was awful. Then, the next tablets, they were an anti depressant and the doctor took me off them because I am Aspergers Syndrome (High Functioning Autism) and the tablets made me not sleep at all (honestly, I got an hours sleep in a week) but those tablets worked really well. My husband though said I was very aspergers like on them. The doctor, as soon as he found out about the aspergers, took me off it. I didn't get any say about that.
I'm so sorry, the beginning the WORST! And waiting for an appt. with a neuro too .. I feel like it's the same story for us all. When I was in waiting to find the right Dr./meds, etc to keep me comfortable I would go to acupuncture. I found someone in my area that specialized in nerve pain. Worth a try?!
Amber, Your Doctor could try acceleration on the NHS. He can write to ask this on your behalf. If you tell him your mental health is suffering as 11 weeks is too long to wait, he could push for a sooner appointment. There are always cancellations and you could be given one of these.
Go back to your GP and plead that he writes on your behalf.
When I was waiting I tried to telephone the consultants secretary to be seen sooner if there was a cancellation she explained the request for this had to come from my doctor. Good Luck xx
When I first got TN and my specialist appt was far away, I happened to have a rheumatologist appt & he saw how bad I was suffering & knew this would have a negative affect on my other issues- so he called the specialist & told him that I have suspected TN, was in severe pain & it was affecting my other issues. The specialist got me in within 3 days! Any chance of dr to dr help in your case?
I know sometimes it hurts so bad you can't even talk on the phone to get the ball rolling- but once you get pain relief it will be worth it. sending you blessings
Apologies Amber, you certainly do have a reason not to take these meds. I hope there are alternates that might help you. I just worry about you and your teacher training, I know how difficult everything is for you. I am hoping for a miracle for you.
amberzak said:
Jackie, I do appreciate what you are saying, but it was an allergic reaction. It was even listen on my records as being a tablet I have an allergy to but they still prescribed it (that's why I started seeing a different doctor). I had a rash that burned like sunburn, a fever, and an aversion to light as well as making my glands up. It was awful. Then, the next tablets, they were an anti depressant and the doctor took me off them because I am Aspergers Syndrome (High Functioning Autism) and the tablets made me not sleep at all (honestly, I got an hours sleep in a week) but those tablets worked really well. My husband though said I was very aspergers like on them. The doctor, as soon as he found out about the aspergers, took me off it. I didn't get any say about that.