Applying for PIP!

General General TN & GPN (Old Site)
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For all of you who live in the Uk and are unable to work due to the pain of this condition or due to the side effects of the meds. I applied for PIP (personal in dependant payment), this has taken over the old DLA (for those who may not be aware of this), well I finally had my assessment for this yesterday, it was a home assessment and the assessor was really lovely. She went through everything I can and can’t do etc and at the end of the assessment she said that she thinks I should qualify for it, although she doesn’t make the final decision but does make a recommendation.
It has been a long drawn out process as I applied for this in April and I probably won’t hear about the final outcome of the assessment for approx 6 to 8 weeks, but if I qualify the payment is back dated to when I first applied for it.
I will of course post again once I receive the final outcome of my assessment.
It may be worth people applying for it now if you are unable to work due to this condition, at the end of it you’re not losing anything by applying for it.

Hope this has been helpful
Mandy xxx

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Hi Mandy

I work for my local authority giving advice on benefits it will interesting to see if you qualify, fingers crossed for you. The DWP are so far behind due to all the changes currently going on in the benefit system so April is not that long ago believe me!

I don't have TN I have A-typical facial pain which affects all four quadrants although never at the same time. I am currently on Amtryptiline and Gabapentin I have a treatment plan to try other meds from my local pain clinic. The pain gets worse when I am stressed so my job doesn't really help. Over the last four months I have tried to cut out gluten from my diet I am not gluten intolerant but my wife read an article relating to gluten and neuropathic pain.

The results have been quite good there have been odd times whilst on holiday I have eaten bread , pasta , and had a few beers and about 3/4 days later I have had an attack. In general if I take out the lapses I still have severe attacks and the pain levels during these attacks has not reduced however the frequency has reduced substantially. There may not be anything in this but I typically would have more days in pain than without , this has now turned around and my pain free days outnumber my painful days.

Hope this helps Rob

3

Hi Rob,

Thanks for your reply, and yeah it was both helpful and interesting especially how gluten can effect neuropathic pain, I will certainly be looking into gluten free diets now.

I suffer with bilateral TN and have had 2 MVD’s, unfortunately without success. The last MVD has left the left side of my head painfully numb and itchy. Unfortunately, I do not tolerate the meds very well at all and on top of my TN meds I am now on slow release tramadol twice a day, with further top ups of both extra tramadol and morphine as required. Some days I not only feel like a walking zombie but I also look like one too, I even scare myself looking in the mirror ha ha!

I used to work as a mental health Social Worker and had just qualified as an AMHP, and haven’t been able to work for the past 3 years, I loved my job and now feel as though I’ve lost everything, especially my independence! I’m aware of how the benefits systems work and I didn’t think I would qualify for PIP but so many people kept telling me to apply for it so in the end I thought that I wouldn’t be losing anything by applying for it!

The assessor said that she felt (as I said before that she doesn’t make the final decision) that I would score high in quite a few of the sections, so as you said it will be very interesting to see the outcome. It is about time that this condition was recognised equally alongside other chronic conditions and that sufferers received the same help and support.

I will, as promised, post the outcome once I receive it, I do agree with you that qualifying for PIP isn’t easy and not everyone with TN wil be able to apply, I think it will be based on individual circumstances and how it affects everyday lifestyles, if that makes sense!

Mandy : )

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HI Mandy, thanks for posting this. I had no idea it existed; I just thought it was for terminally ill people, or people in wheelchairs. I didn't realise anyone (so to speak) could apply for it. I'm in the horrible position currently that my partner has been supporting me but his money is running out and he will have to try and find work. If he doesn't find anything we will have to sign on and I've been worried about how the hell I would cope with that, never mind actually doing a job.

I am not tremendously disabled by my TN, as yet, but the medications do disable me. My most recent set made it impossible to go anywhere or do anything, especially travel on a bus or any kind of transport, due to nausea, and it made hospital visits a nightmare, so I am fretting about trying to get to far-distant job centres in freezing winter weather - can't go on the bus, can't stand the mouth pain when I walk!

And we won't even start on my problems communicating because I can't remember anything! So thanks, I'm going to have a bash. I can't be any worse off than I am now!

P.S. I should just say that the only reason my TN doesn't disable me completely is because of the meds covering the worst of it., so there's no question of giving them up to function better. The meds are an absolute essential, so the side effects are non-negotiable!

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Hi,

PIP (Personal independence payment) is very different to the old DLA, my understanding of is is that it looks at how conditions effect your lifestyle and how you are able to manage day to day tasks etc. Medication is a biggie as the type of medication that we have to take is very strong and not everyone can tolerate it. When completing the form I would say do it from your worst days ( as we can all have better days from time to time), be consistent with your answers and you often end up repeating yourself as one thing can impact upon another thing.

Also make sure that you clearly state what help you require and what you can and cannot do including both the TN and the effects of your meds for example, you said about going on public transport, this would include both travelling and how you manage to get to the transport in the first place! Does your meds affect your walking, ie; do you wobbly, how steady are you, how far you can safely walk outside on your own, does your meds affect your visual and auditory perception etc!

Have you also checked what benefits, if any, you are eligible for at the moment as it might be worth checking to see if you are eligible for Employment Support Allowance, I’m not sure who qualifies for this and exactly how you qualify for it (Rob maybe able to advise on this better than me!), but it might be worth while giving them a call on Mon as they should be able to say whether it’s worth applying for, just a thought!

Hope the above helps and good luck with your application, as we’ve said we’re not losing anything by applying for it!

Mandy : )

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Hi again Mandy, yeah, I've had run ins with ESA a couple of years back when I had very bad gallstones that hospitalised me. I think that was so off-putting I couldn't face going for it for TN, but I know I really should. Ironically, in many ways I qualify for it much more now than I did then. One of the troubles is you do have good and bad and I always think to myself 'I'm not so badly off. I can go to the shops and I'll find a way when winter comes. A cyclist's mask - that ought to do it. And there's a new medication to try, that one will be better. I'll lick this thing; it's not like I'm in agony', but you forget that most mornings it's really hard to get up before 11 am , that the crazy hyper-activity the last lot of meds have left you with gives you chronic insomnia; that you shake so badly for three hours every morning you drop 50% of everything you try to pick up; that your stiff neck that the meds give you won't let you look over your shoulder; that you never go anywhere yourself because a) you're not steady enough to do it and b) the muscle strength in your arms is so weak you can't heft things in shops anyway; that if there's a breeze (a cold one, God forbid), you're reluctant to go out at all. In short, the only reason you are doing so well is because you tailor your life to get round all these obstacles and if you had to work for someone you couldn't do any of it.

So yeah, you're absolutely right. You have to be a bit 'self-pitying' and put all your worst shit down, because otherwise you're being unrealistic and doing yourself a disservice - but oh, how I hate dealing with these people (sorry, Rob, no disrespect to the messengers, just the system!)

Mandy said:

Hi,

PIP (Personal independence payment) is very different to the old DLA, my understanding of is is that it looks at how conditions effect your lifestyle and how you are able to manage day to day tasks etc. Medication is a biggie as the type of medication that we have to take is very strong and not everyone can tolerate it. When completing the form I would say do it from your worst days ( as we can all have better days from time to time), be consistent with your answers and you often end up repeating yourself as one thing can impact upon another thing.

Also make sure that you clearly state what help you require and what you can and cannot do including both the TN and the effects of your meds for example, you said about going on public transport, this would include both travelling and how you manage to get to the transport in the first place! Does your meds affect your walking, ie; do you wobbly, how steady are you, how far you can safely walk outside on your own, does your meds affect your visual and auditory perception etc!

Have you also checked what benefits, if any, you are eligible for at the moment as it might be worth checking to see if you are eligible for Employment Support Allowance, I’m not sure who qualifies for this and exactly how you qualify for it (Rob maybe able to advise on this better than me!), but it might be worth while giving them a call on Mon as they should be able to say whether it’s worth applying for, just a thought!

Hope the above helps and good luck with your application, as we’ve said we’re not losing anything by applying for it!

Mandy : )

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Hiya again.

I really think IOU need to apply again for ESA and give the PIP a go also. When applying for both you really need to put your worst days down! It’s okay saying that different things help you like masks etc but take them away and what would you be like ?!!! I’m going on holiday tomorrow but I’ll msg you when I get back and I’ll tell you more about my application then!!!

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Hi Mandy, I forced myself out of procrastination mode this morning and phoned the PIP claim line. Other than the fact it was eerily scripted and I might as well have been talking to a recorded message, it was fine. Very quick actually; a wonder for DWP! So, I should get my claim form in due course and, hopefully, I'm off.

Yes, please do message me. It would be great to have an idea of what's happening to you ahead of me in the lion's den, as it were! Maybe I can avoid the worst pitfalls that way! Of course, you may be back before I even get the form, so maybe you can give me some hints and tips on filling it in. If not, I shall chant "put down my worst days, put down my worst days" like a mantra and that should see me through. Have a great holiday and speak to you later.

Mandy said:

Hiya again.

I really think IOU need to apply again for ESA and give the PIP a go also. When applying for both you really need to put your worst days down! It’s okay saying that different things help you like masks etc but take them away and what would you be like ?!!! I’m going on holiday tomorrow but I’ll msg you when I get back and I’ll tell you more about my application then!!!

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Mandy have you heard anything yet I'm keeping everything crossed for you. Your one of life's hero's and you have a cracking sense of humour! X

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Well a big hello to you Elaine, lovely to hear from you again and I hope that you are still doing well!
Oops, I kinda forgot to keep my promise on re-posting following the outcome. I did message woman with electric teeth (a name I love ha ha!) to let her know but then I must’ve forgotten to post the outcome on here, so sorry everyone!
Anyway the good news is that I was awarded both elements of PIP on the higher rates so at least this is going to make things a little easier. Ironically, to me, the bad news is that I have to accept that this is the new me, this is my life now and that it doesn’t seem realistic that I will ever get back to the job I once loved! At this rate I’ll be having someone coming round assessing my mental health lol! Saying that, one of my close friends is a mental health social worker too and she just keeps telling me that I was passed redemption before TN, so there’s no hope for me now lol!

Just to let you know too, I was at the consultant again last Monday, and basically I was told there’s nothing else they can do for me apart from telling me about 2 procedures which they then said they wouldn’t even consider doing…why tell me about them then!!! Anyway, they’ve referred me to pain management. I really don’t know what they do, but can anyone tell me that if pain management works for TN, then why aren’t we referred to them first before we are put through various cocktails of drugs which make us feel like Zombies and in many cases, major intercranial operations and procedures! Is this just a way to pass the problem on to someone else? Or does pain management really help when you come to the end of the road? Usually I’m quite open minded but I’m not so sure about this and just feel as though I’ve been pushed aside because they don’t know what else to do!!!
End of rant and once again great to hear from you again Elaine : ) xxx

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Pain management does seem to be an end-of-the-road thing, when they've run out of options. I can understand your sense of grief at being offered it. I felt the same way after every visit to the neurologist, who I ended up making an official complaint about, but I severely doubt if the new one will be much better. I sometimes think these specialists do more harm than good. They 'know' too much and use their brains too little because of it. They are certainly not a source of thinking outside the box. (I just wrote that as outside the envelope - you can tell I was up too early today and my brain's barely functioning!)

That said, I think you could get a lot out of pain management, if the therapists (counsellors?) are good. It sure as hell beats more anti-convulsants if you can get it to work. Have you ever tried Vit B12? I'm getting injections from my doc right now; we're trying a theory out, and I had to fight hard for it, but I'm hopeful - I don't know if it's going to work, but it has to beat upping doses more and more. Apparently, Vit B12 deficiency is more common than people realise and it's implicated in TN by lots of people. There's been quite a few studies on it. But I don't know the origin of your TN; you'd have to see if the symptoms fit you otherwise.

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Hello Mandy just wondered if you had any tip I have suffered with TN now for 15 years it has got worse and worse over the years, the amount of medication I am on now so bad I just feel so bad most days. I have had three ops, I put a claim in for pip and have just received a letter saying I don't qualify for the payment. Do you think it is worth me putting an appeal forward. yours sincerely Lizzy

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elizabeth foster said:

Hello Mandy just wondered if you had any tip I have suffered with TN now for 15 years it has got worse and worse over the years, the amount of medication I am on now so bad I just feel so bad most days. I have had three ops and none have worked, I put a claim in for pip and have just received a letter saying I don't qualify for the payment. Do you think it is worth me putting an appeal forward. yours sincerely Lizzy

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elizabeth foster said:

Hello Mandy just wondered if you had any tip I have suffered with TN now for 15 years it has got worse and worse over the years, the amount of medication I am on now so bad I just feel so bad most days. I have had three ops, I put a claim in for pip and have just received a letter saying I don't qualify for the payment. Do you think it is worth me putting an appeal forward. yours sincerely Lizzy

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Hi Lizzy, I don't know how your TN affects you day to day but if you are on high doses of medication then I don't know how you could fail to qualify for PIP! You need to be very careful when you apply and make sure you tell them everything about the adverse effects of the medication and how the illness itself stops you living a normal life. I would certainly appeal it if I was you, but you need to be sure you approach it from the right angle. I get PIP - let me know if you need any specific help or advice if you decide to appeal.

elizabeth foster said:



elizabeth foster said:

Hello Mandy just wondered if you had any tip I have suffered with TN now for 15 years it has got worse and worse over the years, the amount of medication I am on now so bad I just feel so bad most days. I have had three ops and none have worked, I put a claim in for pip and have just received a letter saying I don't qualify for the payment. Do you think it is worth me putting an appeal forward. yours sincerely Lizzy

16

Hi Lizzy, I would certainly appeal if I was you. As my dear friend above said, you have to detail absolutely everthing to them from getting up, how you are on a morning, dizzy, wobbly, foggy mind, carrying times you get up, as 8 couldn’t say that I could be up dressed etc by 8 ‘o’ clock everyday as soon days I don’t, can’t get uo until possibly 10 am and then I’m there in body but not in mind, as you probably experience. I was/am unable to tolerate the meds so I had to go into very minute detail how I react to them or should I say how they make me feel! Also, you need to go from how you feel and how the TN affects you on your very worsed day and how others have to help you and what they need to do to help and keep you safe. Who cooks your meals due to danger/confusion due to the meds. I made the mistake of thinking I could cook xmas lunch in the early years of my TN, until I rushed to A&E through putting my full hand on a hot ring and burning the whole of my palm and fingers! In other words I am no longer safe to be left alone in the kitchen. Also, what is your safety like in the bath/shower, are you safe? Do you get dizzy and fall/stumble? Do you need someone in the house when you shower again for safety reasons, does the steam etc bring on the pain as it does with myself. How often you shower or bath due to your condition. Are you suffering with any form of depression, I know I am, I’ve put on so much weight due to the medication which gets me down, the illness itself is enough to make one depressed, it’s destroyed my life, taken my identity away, I’m no longer able to work so, yeah, this bloody illness has made me depressed and angry. We have to come to terms with the fact that our lives have changed and have changed for good but it’s really not that easy to accept!
You also need to go into detail of how it affects you during the night ie, it wakes you up, disturbs your sleep on a nightly basis, you need to take top up medication when this happens and as a result how this affects you, it makes you sleepy and therefore, you sleep in.
Take each question and break it down as how it affects you, you’re husband, partner, children and family etc, not forgetting how it affects yourself lol. Really play on it, as I said earlier, from your worsed day. The form try’s to trip you up so be very careful when filling it in, don’t be afraid of repeating yourself this is what they are looking for, consistencies!

I hope the above helps, please feel free to private message me if you need anymore advise/help for want of better words, which reminds me, tell them how the meds affects your memory, word searching in fact your whole cognition the more you tell them, the better it is, if you know what I mean.
Please keep n touch and let me know what happens,

Yours Mandy

And Chancery, so sorry for not been in touch recently. Will try and sit down tomorrow and write to you, I do often think about you and how you are doing, honestly lol xxx

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Thank you so much for your advice I will appeal and will let you know how I get on. yours Lizzy