PIP for vestibular disorder and eagles syndrome

Hi,
I have been turned down for PIP and I have asked (in writing) for an MR. Unfortunately I did not access the guides on here first before original application ( February 2021) or before I had the telephone interview. I also did not access the guides before the MR letter was sent. Having now accessed the forum I realise this is a bad mistake.

I have never claimed benefits before and my health conditions have taken a total of 6 years to diagnose; with a gradual increase in symptoms and their effects over the years (and a dramatic change in the last 12 months).

I wanted to hear from anyone who has similar difficulties and I shall try to be as succinct as possible describing them. Symptoms are both baffling and bizarre and I am only just getting my head around it all.

I have superior semi-circular canal dehiscence with hearing loss ( high/low frequency and issues with conversations in crowded and group situations), Autophony, Tullio's phenomenon, pulsatile tinnitus, tinnitus, chronic disequilibrium and vertigo. Every day I face a challenge with nausea, vomiting, unsteadiness and these symptoms increase dramatically when exposed to sounds above 65 dBnHL(VEMP). Internal sounds are amplified and so I hear my own voice strongly (which is distorted), eyes moving and heart beating. I have a strange eye wobble and a tilt/jump in my vision when exposed to sounds and pressure changes and even when I swallow. I have an acute ( but short lived) increase in vertigo when leaning my head down, coughing or straining. I stumble, fall into things and walk as if I am under the influence of alcohol!. I have a number of falls whilst out and about when I have suddenly become exposed to sounds such as a faulty car exhaust, road works or on the London underground with the screeching of the tube and the pressure changes. These have been minor injuries with cuts and bruises and only one A and E visit where I damaged a ligament during a fall. I have had a number of stumbles at home which have resulted in bruises and on one occasion a burn to the arm when getting a dish out of the oven ( Not requiring medical attention). I cannot tolerate noisy or busy environments and so I avoid them. I am constantly worried that I will become unwell when out and about. I therefore live a far reduced life remaining at home most days. If I have to go out I walk to the local shop, but I leave this journey until either really early in the morning or late at night when it is quieter and not busy. Sometimes I get too sick with nausea, I turn back and return home. I have successfully made this journey 2 times in the last 14 days and the anxiety was huge. I have to keep trying though because if my brain is not given the opportunity to compensate for the balance disorder, the condition will deteriorate. Therefore remaining at home and not engaging in activity which challenges the balance system is not great long term. Any appointments I have, I have someone take me because I cannot reliably drive ( DVLA are currently considering fitness to drive), I have high anxiety ( medicated) and I may need help if I become unwell. For the same reasons I cannot use public transport without someone with me. With all that said, There are many hours and at times days when I just cannot do anything because I am so unwell with nausea and dizziness that I remain horizontal. Lying down is the only way that symptoms ease.

I have other conditions, which may/may not be related, but I don't think they are applicable when it comes to PIP. Bilateral elongated styloid process (Eagles syndrome) with some impingement on cranial flow ( reduced venous outflow), raised intracranial pressure ( headaches, nausea, sudden dizziness with loss of peripheral vision, but short lived).

To sum it all up, I feel unwell most of the time and really unwell some of the time. I cannot reliably engage in any activity when I should or need too because as well as the severity of symptoms being unpredictable, the external environment is also unpredictable. My care was transferred to Addenbrookes because there is a specialist there who is one of only two in the UK who knows something about these conditions.


A big stack of evidence was sent originally such as CT, MRI, audiology, VEMP and multiple letters from the consultant. Although these confirm the diagnosis and make reference to symptoms they do not give details as to how the conditions affect me.
With the MR letter I have also included a GP report (which explains a little more) and I have a statement from someone who helps me. I have also included a diary of 18 days as additional information.

Thank you for reading this far.

My questions are 2 fold:
1) Does anyone have a vestibular disorder which affects balance and hearing and has received PIP, if so I would appreciate hearing your story and maybe get some tips as to how you cope on a daily basis.
2) I am being asked to attend the job centre every fortnight for UC. I have not had my WCA yet although I started claiming 06/06/2021. This is a recent change from telephone to to physical attendance. Out of the last three attempts at an appointment I have been unwell with nausea and dizziness and unable to leave the house. It would not have made a difference if someone had been available to come with me. I am really concerned that sanctions will be applied if this continues to happen. I have informed my work coach each time in advance and I have asked for a reconsideration of the commitments. I have been informed that it is standard practice to have people attend fortnightly whilst waiting for a WCA, even those with a medical condition and as such my commitments cannot be changed.

I am beside myself with worry. As with most conditions, increased stress is linked to increase symptoms. Does anyone have experience with this? Has anyone been sanctioned because a condition has prevented them attending the job centre? How long should I have to wait for the WCA, and is it advisable to chase them up?

Phew...thank you for getting this far. Any advice or tips will be helpful because right now it all feels overwhelming.
Thank you
A

Hi

sorry to hear about your problems and PIP. I am just doing my review now, last one in 2015 and I do have a ton of paperwork. I have odd conditions, its been a journey, including tiny eagles which live close to my carotids but especially the nerves that follow the path of the main arteries. You tend to find eagles in the EDS and cervical spine damaged minority, especially those with auto inflammatory conditions, some autoimmune too. What you also find is that many of us inflammatory disease victims also have one or more forms of Dysautonomia.

Back in 2015, apart from unspecified bilateral optic nerve damage, inflammatory arthritis, fibromyalgia and ops on my knees, no one could figure out what was going on. Well we have it now a shopping list, but this does not help with PIP. Basically I still need the same help I needed back then, a bit more added as I have deteriorated. So no they will not have down what I have and when you look at the links they have for various conditions, its absolute nonsense anyway.

The guides are a life saver, for me they gave me the head chant, 'its not the condition you have but what help you need, to exist as close the a normal life as possible. Its perhaps this very thinking that makes filling in these torture documents so moral destroying. Because when you start to compare what someone your age and healthy does, that you can't, then look at what help you would need to function 'normally', then it physically hurts your soul. But that's what they want, regardless of diagnosis or not. So you have to forget the therapy it took to get you to acceptance, go back and become well in your head, then build the person you are now in terms of help to do and basic needs.

Have they given you any option to remove the ossified structures, do you know if its them causing the other problems by affecting either blood flow or cranial nerves. Thats another thing they like to think you can have an op unless you have a specialist letter saying you can't. I have several saying, no to neck fixation or even disc replacement, or the fav wording 'not considered suitable for surgical option'.

I wish you all the very best and as someone who can only stand for 1 minute, orthostatic intolerance is not for stand up comics

Oh wow TheHUd, I just love your final one-liner, I will have to tell our EDS daughter!
Thanks, Denby

Dear LL2,
Thank you so much for your reply. It is invaluable and very reassuring. I have a couple of further questions based on your response. 1) re: Have you sent in medical evidence. Do you mean directly to my work coach/job centre? If so, then using my journal I have asked to have a telephone conversation to explain difficulties again to my work coach, and this has been refused. I have asked for a portal to be created to allow me to send GP report and evidence to my work coach and this has been refused. I have asked for telephone interviews instead of face to face, again refused. I have also asked for my commitments to be reviewed, and again refused. Do you think it is worth asking for this again? Is it worth mentioning ( politely) that a face to face interview is not a legal requirement and that exceptions can be made?
I appreciate your help.
Take care
A

Dear The HUD,
Thankyou for your reply. It sounds like you have a pretty good understanding of some of the problems I have related to Eagles. The symptoms are a little bonkers and it is so difficult to understand let alone explain. I have pretty large Eagles. Last measured in 2018 as 6cm on the left and 8 on the right, I am on the list for a CT with high contrast which should give more detail as to where they are. I know where they are though because I can feel them protruding into my throat. I can literally flick the one on the left with the back of my tongue! If I gently press under my chin, I feel something pushing my tongue and I cough like mad. I have been told they are impinging on the carotid and this as well as a skull abnormality squeezing the internal jugular gives rise to raised intra-cranial pressure. Odd symptoms such as face tingling, numbness, palpitations and chest pain are apparently because the styloids are squishing all sorts of cranial nerves and reduce blood flow. Also irritating the vagus nerve. But, even though this has been discussed with my consultant and he has explained the bizarre symptoms I do not have this written down. I simply have the diagnosis with very little evidence of the effects. My GP does not 'get it' either and although she has written a report about some of my difficulties she refuses to comment on the conditions themselves. Having read your post, I am going to start a daily mantra " its not the condition...".
Surgeries
Some surgeries have been mentioned..
Removal of the styloid left and right ( 2 separate surgeries)
Resection of the transverse process of the C1 to improve right intracranial flow.
Superior semi-circular canal obliteration ( Sounds awful)
So 4 surgeries have been outlined, each carry risks of further damage, may not work and even if successful will not resolve all symptoms until all 4 surgeries have been completed.
But, there is no actual plan for surgery yet. I fall into a category which is complicated and it is unusual to find someone with a combination of these conditions ( Probably not that unusual, just undiagnosed). He has identified a cohort of about 30 that he is aware of. Therefore the consultant is delaying any surgeries until he can discuss with the MDT and seek advice from other experts in the field. At that point I guess we will decide which one to go for first? So the timeline was a long one anyway considering no clear clinical pathway, the amount of surgeries required and the amount of healing and recovery between surgeries. Covid though has really disrupted the timeline and I am been told not to expect even the CT scan anytime soon let alone surgeries. Will the possibility of surgical intervention ( at some point in the future) mean that PIP may not be awarded in the interim? Crikey, this is a worry.
Thank you again for your reply.
Take care
A