Advice please
Advice please
Hi all,
new here, diagnosed with chronic cluster headaches 13 months ago, what a terrible time it's been, a shell of a person I used to be, currently on oxygen therapy, injections, gamma core, and topiramte as I could not tolerate verapamil. I've had 2 occipital nerve blocks, my attcks have reduced from 8 a day to 3 to 4 , fair to say I feel at my my wits end and my quality of life is shocking. Just about holding on my to my job after 16 years of service with reasonable adjustments, flexiable adjustments homeqorking etc in place, any how I was kindly informed to apply for pip so I have. I filled out the form in great detail describing all about how the condition/attacks affects my daily activities and I can not do things reliably/safely etc I had some help with that. Next stage phone assessment went well very quick which I found strange, so I contacted D.W.P. for a copy of the form well there are so many descrepencies and errors I'd go as far as she's talking about at least another 2 people in the report I've scored zero on everything there's no conservation for fluctuating conditions she said my medication is effective well if it was I would not be on so much abortive treatment and be suffering with these monstrous head banging attacks, frustrating as I know I will be coming up to loosing my employment I'm so mentally drained and it's been very hard, a decision on the pip has not been made yet as far as I'm aware should I ring up the D.W.P. to the decision maker and point the discrepancies out, apologies for the long message it's been great to find a forum that my neuro advised me about that actually understand my pain you'd be surprised about how many people have suggested to take paracetamol but that's a different story thank you
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Good morning, I am sorry for your condition, for once there are people who really do know how you feel.
What you describe in the pip process does seem to be the norm, I personally had the same thing, and when I read the assessors report, there was a big chunk that was to be honest lies and miss quotes, putting things in the forms I never even said.
So from my point, the things I did that have helped, was to ask for a reconsideration (I think it was call mandatory reconsideration, but others will reply if I have the wording wrong, but will be on your response from DWP)
I also put in a formal complaint about the assessment listing all the things they had put that where not actually said (they record these assessments)
My reconsideration was rejected (this is also normal for DWP) and then I went for formal adjudication in front of a judge (when you get to this point speak to Brain Charity, they have some very helpful advise and can also help with the paperwork for the adjudication) for me before it went to the judge, i was contacted by DWP in relation to my formal complaint, and although they never took any responsibility or admitted any fault, they changed their point and I was given the pip.
I am sorry if any spelling or wording is wrong above but I have only been out of attack for a couple of hours so still a bit wobbly
Great advice, thank you.
Welcome to the forum Nicola, sorry you need to be here.
As Karl knows, applying for PIP is an arduous journey, but worthwhile.
We all suffer the loss of quality of life, but a good Neurologist that specialises in CH is a huge part of recovering some of that.
We have a drop-down menu with advice on some common topics, PIP is under Get Informed> Your Rights here.
Help with workplace issues is also a drop-down topic, although you seem to be well informed about reasonable adjustments. Cluster Headache is a disability, so your employer shouldn't be able to dismiss you.
It's rare to find anyone that understands what we go through, so when a sufferer finds a whole group, we expect long posts: You're not alone.
Thank you both,
if you don't mind me asking has anyone tried litium as a preventative, it's the next stage of my care management plan with my neuro, as the topiramate has not been that effective and does have some what some side effects with memory and speech difficulties. I'm sure you have all been at this stage where it's a bit of a trail and error on what works better for each person thank you in advance
Lithium isn't usually considered for Episodal Cluster Headache, which is my condition. It's side effects are rarely worth the short bouts.
I can't really comment on Chronic CH: I'd need far too much information about your CH journey.
I'd recommend you call our advice line; they'll call you back for a chat.