I feel like I'm being ignored, has anyone experienced this?

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Hello everyone, my name is Sam and I’ve had TN since I was 18, I was officially and finally diagnosed when pregnant on my 23rd birthday, ha, and I’m now 25 and I’m still in the same situation I was in at 18.

I was only diagnosed as, being pregnant, I couldn’t take anything and up until then I had been self medicating with anything I could safely take and trying my best to manage. I think the hormones brought on by pregnancy made my TN worse, and at 6 months pregnant, I had to go on maternity leave early and it became so bad at I had stopped eating and was suffering for days and days on end. I ended up going to A&E and being diagnosed.

That’s pretty much the last time I received real help.

I have constantly been going back and forth between home and the doctors, but I am receiving no help.

As soon as I mention I have it in both sides of my face, I’m told that any surgery is out of question but not given an explanation.

I’ve been on several of the different medication we are supposed to be put on and none have helped so I’m currently back on 1200mg of Carbamazepine each day, along with 10ml of Oramorph every three hours, 30mg Diclofenac three times a day, and then I also take 8 strong (30/500mg) co-codamol a day.

I can take the each recommend dose all at once and it literally does nothing for me. I’ve been back to the doctors and told them this.

So, my question is this, has anyone else experienced this? That your Doctor is quite happy to literally give you anything apart from something that’ll help as long as he gives you something to get you out of his office?

I’ve explained to them time and time again that I’ve had Carbamazepine in the past and it hasn’t worked, and he says to keep trying. It’s been four months. I don’t know what else to do apart from just nod and accept what they’re saying, I don’t have the energy to argue, and I’m in too much pain to follow it up.

I also can’t get referred to a speacilist as, as mentioned, they say surgery isn’t possible if it’s on both sides.

I’ve never even been sent for an MRI to see why I might have it. It’s only through this site that I now know that’s pretty much the standard when first being diagnosed.

So, yeah, has this happened to you or to someone you know? Did it seem like they didn’t understand the condition? Did you finally receive help? What did you do?

It doesn’t even have to be TN, it could be any condition.

My last option is to get a loan and go private but being single with a two year old, I really don’t want to. I can’t even change doctors. :confused:

Thank you in advance, I would just like to know that I’m not the only person struggling to find actual help. :slight_smile:

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I am so sorry you are stuck in this rut. Not tht my case resembles yours in the slightest, but my GP mother diagnosed me at 20 with the words "You have TN. There is nothing to do about that." When I finally got referred by a new GP to see a neurologist 10 yrs later or so, it turns out there was a lot of strategies.

I am bilateral like you. That does not mean that surgery is out of the question, but one of the most common reasons for TN according to my present neuro, is that with age, hardening arteries interferes with the nerves and put more pressure on the nerve when they were nice and pliable. That means that surgery is often not an option for young patients. But, you have to see a neuro, because a GP is not trained to make this evaluation. You also need a proper MRI to exclude other causes, or to evaluate whether surgery is in fact an option at all. The neuro will know the latest drugs (and all the old nes)and discipline specific news about neurological conditions. You need to insist to your GP, or change GP. There are plenty more drugs than Tegretol.

It turns out my TN is caused by herpes simplex (cold sore virus), and so I am on antivirals permanently. The neurologist will help you sort stuff like that out - together with your GP.

Also - the neurologist has nothing to do with surgery, that will be neurosurgeons - specific surgeons at hospitals or surgical clinics.

You need to insist. If they say no, you really need to change doctor. Can you enlist a friend or relative to come with you? I find that it often helps to bring my sister or father, they are on my case!

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Hi red kitty.
Yeah my gp has been like that with me almost since the start. My doctors is similar to yours as well where you are under the surgery not one particular Dr. Out of about 6 I have sseen only one was understanding. I was coming away from the doctors wondering if they even believed me. One of them would say what would you like me to do for you? They gave out prescriptions and sick notes for fun. Didn't discuss the medications with me or anything.
When they first mentioned tn she just wrote the name on a piece of paper and said to Google it.
Unfortunately none of the main meds worked for me at completely controlling the pain, at best maybe a 50% reduction in pain but when counter balanced with the side effects just wasn't worth it for me.
You need to ask for a referral to see a neurologist, I don't see how they can refuse you.
Every Dr I have seen has had a different opinion on the diagnosis and the treatment so keep pushing your gp for a referral, insist upon seeing a neurologist. I know what you mean though when you say you can't fight, pain and exhaustion sap everything from you. Take someone with you to your next appointment with your Dr for moral support.
The last neurosurgeon I saw on the NHS said there was a compression showing on my mri but it wasn't the sole cause of my pain and he ruled out any surgical treatment. Was left in limbo.
I have been really lucky in that my work has just introduced bupa cover, just back from seeing surgeon today and he has offered to do mvd. Excited and scared in equal measures.
I hope you can get to see an understanding Dr who can and wants to help.
This site is amazing, it's so reassuring to know that you are not alone and that someone does understand.
Fingers crossed everything works out for you