Author Topic: Anyone have trigeminal neuralgia & on gabapentin and receive ESA or DLA?  (Read 7321 times)

MsC

  • Junior Member
  • **
  • Posts: 4
As the title says really

Trigeminal neuralgia is a facial nerve pain which is also called the suicide disease due to the suicide rates of those suffering. The pain is excruciating and although gabapentin helps it doesn't stop the pain and I can end up in great pain.

Bad times leave me with migraines, vomiting from pain, dizzy, sleepy, unable to eat, cant brush teeth without pain, can't wash my face as it hurts so bad and speech is slurred and hard to achieve

My GP said to try apply for ESA or disability as even the wind or cold weather can set off an 'episode'

Has anyone received the above for TN ( as it's also called) or what's the likelihood of my receiving it?

Hurtyback

  • Charter Member
  • Super Hero Member
  • ******
  • Posts: 5800
Re: Anyone have trigeminal neuralgia & on gabapentin and receive ESA or DLA?
« Reply #1 on: November 18, 2011, 01:00:13 PM »
Hi MsC

Don't forget that, with both ESA and DLA, it is not the actual condition that counts, rather the effects it has on you. If you can make a good case then you stand as much chance as the next person.

Sunshine Meadows

  • Administrator
  • Super Hero Member
  • *****
  • Posts: 7598
Re: Anyone have trigeminal neuralgia & on gabapentin and receive ESA or DLA?
« Reply #2 on: November 18, 2011, 03:37:53 PM »
MsC,

I have suffer from TN and found having a job made my symptoms much worse. For me my ability to manage my environment plays a signifcant role in how much pain I am in. Stress and being overtired makes things worse, so does strong smells and perfume, and the postition of my head also makes a difference. From you description your situation sounds worse than mine when it comes to severe attacks and it is definately worth trying to claim ESA. I am not sure about DLA though because that is divided into two components: mobility and care. TN does affect mobility but the criteria is about whether you are able to walk or if you are safe outdoors. In terms of the care component it is about whether you are safe and also if you can do things for yourselflike cook a meal. Its like Hurtyback said you need to be able to make a case in terms of how TN affects you.

I have TN, CP (wheelchair user) and Menieres Disease and so it is hard to say how the decision to give me ESA and DLA was made.

Do you have a job at the moment, would cutting your hours help?

MsC

  • Junior Member
  • **
  • Posts: 4
Re: Anyone have trigeminal neuralgia & on gabapentin and receive ESA or DLA?
« Reply #3 on: January 06, 2012, 03:58:31 PM »
Sorry for delays

I had to leave my job due to TN. I work in a nursery and as you said, the stress levels would trigger my attacks but I also feared the kids would accidentally hit my face.

I've had a rough time of it lately. It's been so bad that I'm housebound when the weather is too cold or windy. I actually have a phobia of wind beginning to creep up and feel a little panicked but the weather has been really windy in London this month. The TN has been so bad that brushing my teeth sets me off on a bad day.
My gp said ' stop whatever triggers it. If brushing your teeth trigger it then don't do it'. How bad is that though? I have to brush my teeth but I now use tiny baby toothbrushes and it take me ages to do. Anyway, my gp sent me to a pain specialist but they discharge me stating 'there's nothing more we can do'. They did refer me to a neurologist though but had the same outcome.....as my TN came from an injury/assault, it's classed as trigeminal neuropathy and can't be corrected with surgery so I'm kind of back to square one.


Just left my GP. She said she thinks i should apply for disability and will have her full support of how bad it is but I'm a bit scared of the outcome from stress if they say no and what not.

DeusExMacintosh

  • Charter Member
  • Silver Member
  • ***
  • Posts: 44
  • Cartoonist
    • Skepticlawyer
Re: Anyone have trigeminal neuralgia & on gabapentin and receive ESA or DLA?
« Reply #4 on: January 06, 2012, 06:46:37 PM »
I experience this, but it's a symptom caused by wider peripheral neuropathy (my immune system keeps nibbling at the wiring insulation). Fortunately that has made it easier to prove, I just need a nerve conduction test on my arms, but am not sure how you'd go about it. I can appreciate how debilitating it is, but it may be 'only' considered as a chronic pain condition by the DWP and you'd have a big fight, I suspect. They're notoriously bad at taking fluctuating conditions into account. Good luck whatever you decide.  >star<
If you think reality makes sense, you're just not paying attention!

Monic1511

  • Moderator Welfare Rights
  • Hero Member
  • *****
  • Posts: 2272
Re: Anyone have trigeminal neuralgia & on gabapentin and receive ESA or DLA?
« Reply #5 on: January 06, 2012, 07:58:18 PM »
Mrs C
you have to explain (for DLA) how the pain affects your ability to walk, go out the house, wash, dress, and feed yourself.
Now Im guessing here but do you need to be encouraged to eat? is the pain so debilitating that you do nothing for several days no changing clothes or having a shower.

ESA is completely different and you should have claimed this as soon as you left work for ill health reasons so do so asasp if possible.
As for DWP saying no - thats what the appeals process is for, an appeal letter just states where the dwp is wrong so don't be stressed by them saying no - they often say no & at appeal are told they are wrong & the benefit is awarded.
Good luck
Monic

amonrosier

  • Bronze Member
  • ***
  • Posts: 21
Re: Anyone have trigeminal neuralgia & on gabapentin and receive ESA or DLA?
« Reply #6 on: January 06, 2012, 10:17:01 PM »
My spelling might not be good with tablet names.

Yes, I have neuralgia, its absolutely agony. I got put on Lyrica, then my idiot Doctor tried to take me off them lying they were no longer on the market, and he put me on Gabapentin, I got sick as hell. I rang a locum, who was unusually cooperative and said my Doctor should never have taken me off Lyrica after 3 years use. He could not understand why he did it. Lyrica are the only pill that help me, and I hate their side effects, but the pro's outweigh the cons. Also, the locum superseded my own Doctor and gave me a temporary prescription of Lyrica. He rang me back, and organized a delivery to my home, he was brilliant. He told me he spoke to four of his colleagues about what my Doctor told me, and he told me without hesitation that my Doctor was a liar, and he would fax him to get me put back on Lyrica. I got put back on Lyrica, but my Doctor is making my life hell with other meds now, and I believe it is because the locum took my side.

In my last DLA review, I wrote that I had neuralgia, I usually don't put this down, I have other disabilities, lets just say seriously bad health. I was on MRC and LRM when I got the review, and because I wrote I had neuralgia, they sent out an Atos Doctor. He was very very interested in my pills. Once he seen Lyrica on the table, he shook his head as if to say, ahhhh, you do have neuralgia. He was a very rude Doctor, but I stuck to the questions as advised by people on this site. I did not rant, I listed all my disabilities. I took my time, and I stayed with the details rather than rambling. On the way out of my home, he told me, Good luck Jim. I couldnt believe it, after the way he was.

I got Two High Rates indefinitely. I can honestly say that neuralgia played a huge role in getting me this. It is an agonizing illness, and it can strike at anytime.
« Last Edit: January 06, 2012, 10:23:53 PM by amonrosier »

Pentesalie

  • Charter Member
  • Hero Member
  • *****
  • Posts: 611
Re: Anyone have trigeminal neuralgia & on gabapentin and receive ESA or DLA?
« Reply #7 on: January 09, 2012, 03:12:34 PM »
I first got TN in 1979, it was the first inkling of a severe ME relapse and spent a month in hospital the following year while they tried to fathom what it was. Since then it's kicked off sporadically until becoming permantent two years ago and it diffinately impedes all aspects of your life. My GP has put me on Carbamazapine, along with Morphine, which takes the edge off it, but there are still times went it's a case of 'bang your head against the wall to take your mind off it'!
Best of luck with your claim MsC
Cheers, Pen.

MsC

  • Junior Member
  • **
  • Posts: 4
Re: Anyone have trigeminal neuralgia & on gabapentin and receive ESA or DLA?
« Reply #8 on: January 09, 2012, 08:23:23 PM »
My spelling might not be good with tablet names.

Yes, I have neuralgia, its absolutely agony. I got put on Lyrica, then my idiot Doctor tried to take me off them lying they were no longer on the market, and he put me on Gabapentin, I got sick as hell. I rang a locum, who was unusually cooperative and said my Doctor should never have taken me off Lyrica after 3 years use. He could not understand why he did it. Lyrica are the only pill that help me, and I hate their side effects, but the pro's outweigh the cons. Also, the locum superseded my own Doctor and gave me a temporary prescription of Lyrica. He rang me back, and organized a delivery to my home, he was brilliant. He told me he spoke to four of his colleagues about what my Doctor told me, and he told me without hesitation that my Doctor was a liar, and he would fax him to get me put back on Lyrica. I got put back on Lyrica, but my Doctor is making my life hell with other meds now, and I believe it is because the locum took my side.

In my last DLA review, I wrote that I had neuralgia, I usually don't put this down, I have other disabilities, lets just say seriously bad health. I was on MRC and LRM when I got the review, and because I wrote I had neuralgia, they sent out an Atos Doctor. He was very very interested in my pills. Once he seen Lyrica on the table, he shook his head as if to say, ahhhh, you do have neuralgia. He was a very rude Doctor, but I stuck to the questions as advised by people on this site. I did not rant, I listed all my disabilities. I took my time, and I stayed with the details rather than rambling. On the way out of my home, he told me, Good luck Jim. I couldnt believe it, after the way he was.

I got Two High Rates indefinitely. I can honestly say that neuralgia played a huge role in getting me this. It is an agonizing illness, and it can strike at anytime.

Hi all

So glad that you got a great result Jim! I'm sure you understand the pain that comes with neuralgia or neuropathic pain. It's a Hard one really....how can you prove the amount of pain that you are in? I guess I can give it a go as I have the backing from my GP and surely she has notes from the pain clinic specialist that I saw before Xmas (he said that there was no surgery that can help and I have to try and cope with the pain and side effects of meds)

amonrosier

  • Bronze Member
  • ***
  • Posts: 21
Re: Anyone have trigeminal neuralgia & on gabapentin and receive ESA or DLA?
« Reply #9 on: January 11, 2012, 01:39:35 AM »
Like I said, I did not usually put neuralgia on my claim form, because there really is no proof. I had no medical proof, just my GP factual report. And to be honest, I think my GP wrote nothing about me having neuralgia.

I thought I had made a terrible mistake by putting it on my review claim, then after a 16 week wait to discover an Atos Doctor was visiting, I felt suicidal. I kept telling my partner, I have made a huge mistake, I should never have mentioned neuralgia.

The DWP must have went through my claim with a fine tooth comb, that Atos Doctor asked me everything that I knew, I had difficulties with on the form. He did stick to the usual questions about cooking, he did ask me to walk two or three steps, but the one thing he was most interested in was my medications, and I can only give you an opinion and say Lyrica were my proof. Just be careful how you tell them you were diagnosed.

Sometimes, actually a lot of the time there is no actual proof of the pain you have. Neuralgia is a devastating illness, when the humidity is high the tears stream down my face, i want to pull out every tooth in my head, both my cheekbones and jawbone be on fire. I had shingles on two occasions and herpes simplex in the right eye, and this obviously destroyed the nerve. It is a debilitating but a fluctuating illness, one that even an Atos Doctor did not take lightly, so go for it.