HELLO, NEW OPTIONS.

For those who don’t have me on Instagram you missed out on a photo of me post-run around an oval due to this rush of happiness I got today.
There was more to the story than that…

I would like to share with you that I had my interview today with the Chronic Pain Management Clinic at one of the best hospitals here, and…

I got in!

(hence, why I felt on top of the world and ran an oval three times).

The interview had me sit in a small room with a Physiotherapist, a Rheumatologist, a Neurologist, a general GP and a witness.
I was interrogated beyond belief and had to recite every small detail since 2014 (which is incredibly difficult when you suffer from brain fog).
I named every medication I have been trialled on, every test done, every Specialist seen. I had to do the routine ‘touch your toes, jump on the spot thing’ too.

There was a bit of shock, disbelief and then they asked if they could have five minutes to themselves to discuss (which turned into about twenty minutes being alone in a room).
Then they came back and gave me the news: they wanted to help, so I’m IN!

Together, they will be writing a plan of attack and contacting my important Specialists (my Gastroenterologist, Rheumatologist and General Doctor). These are some of my potential pathways:

A) ZOSTRIX “chilli” cream used for sufferers of Post Herpetic Neuralgia.
Has anyone used it before? Apparently the burn is pretty painful, but it helps with nerve damage and severe arthritis? They were shocked that I was not put on it when I first developed Shingles. It might be too late now 😦

B) Physiotherapy with someone specialised in Post Herpetic Neuralgia (Nerve Pain from Shingles).

C) Anaesthetic injections in my neck

D) an appointment with the Dizzy Day clinic to help my balance and dizziness

E) A new antidepressant which targets nerve pain (my current one targets my stomach, so we have to be careful with this option).

I obviously chose option A to attempt first.
(Who would turn down an attempt at the Chilli cream?)

My consultation today was covered, but I will unfortunately have to pay a small fee to see the Physiotherapists. It is 85% cheaper than my current place, so I guess that’s a bonus.

My allowance with the government ends in August, but as usual, there is a wait with my start to treatment for at least another five weeks. My Government Allowance could potentially be extended so I won’t have to look for work for another three months and solely focus on treatment… but they don’t want to jump the gun yet. I still have two months.

So, to sum it all up, I am really excited to see where this takes me.
Like they said today, “it’s all about trial and error”. I was left thinking that everyone had given up on me, and that we had tried everything and that I would have to live with this uncertainty forever.

Apparently we haven’t tried everything. I just had to find a new team, with new ideas.

My treatment for H.Pylori ends on Friday, so I am also excited to finish that too. It has been one of the worst medication treatments I have ever been on (and I don’t usually whinge about medication).

Lots of love and spoons to each and every one of you.
Thank you for your endless support on my journey.
There is hope out there for each and every one of us. It unfortunately takes a lot of time, a lot of trials and a good, caring team of professionals… but there is hope.

C xo.

11 comments

  1. So glad you have finally got to this point in your journey! Things are on the up 🙂 so pleased for you 😀

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  2. I’m happy for you and interested in your results. The zostrix – if it’s a cream it’s also over the counter. but they have patches that they put on in the doctor’s office – my pain management guy said that he had not had good luck with it and didn’t recommend it a lot because of the intense pain (with the patches). i tried the over the counter cream when i first started having my postherpetic neuralgia and it didn ‘t work. It HAS worked in the past on my joint pains which is why i was so excited. What is the new antidepressant. I would love to try anything that might work. Best of luck and I hope you have great success.
    Terrie

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    1. Hi Terrie, welcome to the blogging community. Are you currently on an antidepressant for your pain? Zostrix did not provide me with much relief. I see my Specialist tomorrow to discuss a new antidepressant option

      Cass

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      1. Hi Cass, Thanks for responding. I’m not on an antidepressant because most of the ones they use for this are contraindicated in epilepsy and I’ve had epilepsy since I was 21 (certainly more than a year or two ago…ha ha). I’m still titrating up the gabapentin and it has helped although there are still way too many times when the “cattle branding” takes over, especially with the allodynia. having one type of pain is bad enough but the two together stinks. I do find that my “baby” Tens unit (got it on amazon for $49 helps quite a bit but then gives my skin fit. they are talking about a spinal cord stimulator but I don’t really want that. Thank you for posting on this important condition (and the others you have). you are an inspiration.
        Terrie

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