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Agoraphobia and Hospital Appointments

MaxineAshley

Hi

Recently my agoraphobia has made a massive impact on all my appointments as I can no longer leave my home.

I have had to cancel my psychiatrist appointment twice, and not seen him since October last year.
I’ve also had to cancel my hospital appointments for all my osteoarthritis in most maybe all my spine, fractured shoulder (that was left unattended for 8 months), curvature in my spine, prolapsed discs, Cauda Equina Syndrome, nerve damage, urology (hypersensitive bladder) and pain managements, but when it is explained that my agoraphobia is preventing me from attending the appointments, I receive another appointment much later in the year, like 26th October for the pain clinic.

Fortunately a District nurse came today to take my blood as I suffer with Vitamin D Deficiency at a severe low and dangerous level.

I really need advice on getting the help I need without having to leave my home, as I’m terrified to go outside.

I feel stuck on a hamster wheel as I know I need the hospital appointments as I had about 10 episodes of falling down the stairs last summer and hitting my back and landing with a full impact on my lumber and coccyx, and feel I need a new MRI as they base my spine on a previous MRI from May 2017. But now I can’t leave my home, how will I be seen by the correct health professionals?

Maxine

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Comments

Antonia_Alumni

Hi @MaxineAshley welcome to the community. How are you doing today?

I am sorry to hear this, that's a lot to go through. Thank you for sharing this with us. Has your GP or Doctor made any suggestions as to how you can go about this?

Will having a friend or family member attend the appointments with you be helpful at all?

I'll tag in @MickConnon our mental health advisor for his advice.

[Deleted User]

Sorry to hear you are struggling a lot with getting help.

Can you manage to leave your home with someone and would it help if you booked the appointments for a quiet time of day?

I also have agoraphobia and I'm the same as you when it comes to appointments, my Son comes with me but even then I cancel appointments more often than not, I do manage to attend some with the help of my Son.

It's hard work isn't it. I'm trying to figure out how to get help with different things myself because I can't use the phone properly either.

I'll keep my eye on this thread to see what others suggest.

MaxineAshley

Thank you @Antonia_Scope and @WF2k for responding.

I used to be able to go to the appointments with my mum, but now it’s even worse and I find that triggers my anxiety issues and extremely negative thoughts of suicide.

I’m hoping my psychiatrist will visit me at home, but not sure about the hospital and physio appointments?

And like @WF2k I truly struggle to make and answer phone calls.

I appreciate that I’m not the only one who suffers like this as it helps not to feel I’m the only one with these problems.

Maxine

Antonia_Alumni

Hi @MaxineAshley thank you for your reply. I see, I am sorry to hear it can be a trigger for you.
If it's possible could your mum or someone you trust, call, text or email Anxiety UK's Infoline for advice and to get in touch with a medical professional to see if any adjustments can be made?

MIND have some self care tips that can help with anxiety , tackling negative thoughts with distraction and practical tips if you are having suicidal feelings.

You are not alone and we are all here to support you. Please feel free to talk to us, some of our members have mentioned agoraphobia too.

Please keep us updated.

[Deleted User]

I wonder if the GP can give you something to take the edge off your anxiety so you can actually attend even one appointment and get the help you really need. Can your Mum speak to the GP on your behalf? I've made my Son my appointee at the medical centre and the assistant practice manager is aware that I can't always go in and I explained via a letter to her about how my anxiety/depression and FM affect each other.

I don't know what else to suggest with me struggling myself. All I can do is offer to be someone you can talk to and relate to if you need. Sending you lots of hugs.

Connie00

Hello

My Name is Connie00

I am one off the community Champion’s here at Scope. it’s really nice to meet you.

Welcome to the Community. its good that you have reached out to us.

Have you asked your Doctor to do a home visit? Are you on anxiety Medication?

You have so much going on with your body at the moment, if you are taking Medication

For your other symptoms these could be reacting to make your Condition worse than you actually are.

It might be wise to have a chat to your Doctor, give them a call.

if we can be of any further help to you please let us know.

Have a good day

@connie00

Antonia_Alumni

Thank you for sharing your experiences with us @WF2k

[Deleted User]

Np @Antonia_Scope

MickConnon

Hi @MaxineAshley, @WF2k, @Connie00, @WF2k and @Antonia_Scope. Apologies I haven't been on this forum for a while but been very busy. Agoraphobia is a very debilitating problem and I can understand fully how this impacts on attending hospital appointments . Your psychiatrist should be able to visit you at home to review your medication so please insist on this and do not accept any explanation that they insist that you come in to clinic. As for your GP, it might be a good idea involving those family members close to you (and more importantly trust) to help you gain access to the services you need. I know GPs do home visits too and this can be requested. As for the specialist hospital visits, this is a different matter and will definitely need support from family, local voluntary services who can also arrange transport but I do know that if it is a volunteer car service that you do need to pay mileage for this.
Am thinking about something that might assist you with the anxiety side of things and although there are medications out there to help, like Benzodiazepines like Diazepam and the like, GPs get a little twitchy when they are mentioned as they become addictive very quickly. There are alternatives to this that can help which do not have the same addictive side effects like Pregabalin. I am telling you this as it will be looked at better by GPs and are less addictive. However, the other medication you are currently taking will need to be looked at closely by the GP and Pharmacist. This is due to contra indications and I have found Pharmacists to be better at spotting side effects than GPs.
The thing I understand about Agoraphobia is that the longer it goes on, the more of a problem it becomes and it is about breaking that cycle. I totally 'get' you feeling safe at home and have been called in to help someone break the cycle. Even if its for a minute outside the house or even opening the door and standing close to it for a little while - gradual exposure. I help others use breathing techniques, distraction and have therapist friends who recommend this too. I have noticed that @Antonia_Scope mentioned Anxiety UK who might have some other techniques that might be useful. I realise that what I may suggest to you will be a tall order and understand that one fully, have been there! :-). Little steps at a time, don't try to push ahead as that is when problems start.
I'd start with the GP and get them onboard as its someone that can pull a lot more strings than a lot of us can. Anxiety UK might be able to recommend other things. Am here listening and am here if you need to vent. Sending you positive thoughts

MaxineAshley

Thank you @Connie00, @WF2k, @Antonia_Scope, @MickConnon

I appreciate all you kind and helpful comments.

I’ve been on Diazepam for over 3 years, and Amitriptline (for nerve damage from Cauda Equina Syndrome), unfortunately I can’t take Pregabalin as I had severe side effects from them, and many other types of medications, which maybe due to the cocktail of meds I’m already on?

My mum is always so busy that it’s hard to pin her down, I only get to see her when I used to have my appointments or when she would bring me my medications each week as I’m not allowed to hold on to them myself due to suicide attempts.

My husband works full time, so he isn’t able to help with phone calls.

It truly feels like a hamster wheel at the moment.

I’m hoping to be able to have a personal garden which won’t be overlooked by others if the go ahead is a yes, keeping my fingers crossed.

I truly appreciate the support and guidance.

Connie00

@MaxineAshley

We are here any time you want to reach out

@Connie00

April2018mom

Hugs. I know this is not easy but hang in there. Take it slowly at first and then see what happens next without any problems. Definitely approach the GP to ask for help. What medication are you on?

Connie00

Hi @MaxineAshley

That is quiet a cocktail of medication you are on as you say you can’t take Pregabalin

Due to side affects have you tried Gabapentin she is a sister to Pregabalin, I find that

Better to take?

I am sorry you don’t see your Mum as much as you want, do you have a good relationship

With your mum perhaps you can reach out to her. Tell her how you are feeling

emmarenshaw

Welcome to the community @MaxineAshley. I hope you get the support you need but just know that the community is a lovely bunch and we’re all here when or if you should ever need us.

MaxineAshley

@Connie00, I’ve tried Gabapentin and had full body muscles spasms which locked and felt like having severe cramps all over my body, so that meditation is a no no for me.

I’m close to my mum, it’s just her lifestyle that keeps her busy all the time.

@April2018mom,
I take Tramadol, Paracetamol, Declofenac, Amitriptyline 10mg & 50mg, Omeprazole, Tolterodine, Diazepam and Symbocort for my asthma. All on the highest dosage which to be honest doesn’t help.

But i I know there are people in worst situations than me and are on stronger medications, but my pain clinic doctor doesn’t want me to take any tablets anymore, just to stop taking the ones I’m on.

KorrinaNewt

Hi hunny o suggest taling it a day at a time go a little further put your door

[Deleted User]

@MaxineAshley I don't take meds for my MH problems, haven't since 2012, I'd tried many different types and sadly none of them helped, I was referred to a psychiatrist who advised me to stop taking them. I've also tried CBT, counselling etc. I can't take painkillers nowadays due to swallowing and stomach problems.

What about some sort of support worker? Then again, if you are anything like me, you may not be comfortable with a stranger, but you really do need some help to try and get you the correct care. Are you able to email the medical centre you're with and explain that way?

MaxineAshley

@WF2k

Thank you for messaging me again.

I was meant to have a social worker.

I saw her at the end of 2017, then in July 2018. I don’t know why she never bothered with me after that as I was meant to have 6 appointments, over 12 weeks, to try and get me out which was the initial appointment back in 2017, when she came to me for the first time and assessed what help I needed.
Then I never heard back from her. So my psychiatrist arranged again for her to see me, that was in July, she left saying, she will wait for my anxiety to calm down before trying anything.

So I was to deal with it on my own.

I know the system is under a lot of stress due to rising numbers of people suffering with health problems.
So I’m extremely pleased to be part of this community as I feel supported and helped with suggestions with I truly appreciate, thank you for that.

[Deleted User]

@MaxineAshley Yeah it's a shame when that happens, I had a support worker but it was a charity run thing so they were limited as to how long they could help me, she helped me with what I needed then had to sign me off, I can't get another from the same place as they have new funding and their criteria has changed.

It's a shame the social worker hasn't followed things up with you yet, does your psychiatrist have any suggestions?

MaxineAshley

@WF2k

The last time I saw my psychiatrist was back in October.

I’m hoping he will be able to see me at home now as my 2 previous appointments my husband had to call and cancel as I was having massive panic attacks and self harming.

I then received a letter asking me to see him at his place of work on the 18th June, which I started to panic about, so I managed to get my husband to call again and ask him to visit me at home.
At the moment I’m waiting to hear back regarding that.

In October he said he was going to contact social services to restart my sessions but as yet, nothing has happened.

I agree with you about the whole criteria changing and budgets too, having the knock on affects to help people out.

If I could afford to go private I would to help take the strain off the system plus get the help I need quicker, one day that might be possible as I’m writing a novel and hoping to get it published the beginning of next year.

At lease suffering with all my problems I can still write, and make a career of being an author. With that I live in hope and have faith.