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Mamamia: My experience with medication

Author:
Mamamia_0794

It’s time we talk about the addiction killing more Australians than heroin and ice combined.

(Excerpt from mamamia.com.au. Story by Caitlin Bishop)

Soula Mantalvanos was 37 when she was sitting on a fit ball and it burst. She landed on concrete, hard.

“It was a split second. It was bone to concrete and it felt that way. I was in shock and then thought ‘I can’t move, I can’t move’. Slowly, I turned over and crawled to the carpet,” Soula told Mamamia. 

Before then, Soula walked everywhere. She lived with her partner in the heart of Collingwood, Melbourne. They would walk to see friends, walk to dinner. Soula did yoga four times a week. She could hold a shoulder stand for eight minutes.

Soula Mantalvanos. Image supplied.

“I had a full life, creating art, working as a graphic designer, travelling overseas once a year. I had no limits. Now, my life is 30 per cent of that,” she said. It’s been 10 years since the fit ball burst.

Soula went to the doctor, was given pain medication and told to come back in eight weeks if the pain wasn’t reduced. Yet it worsened.

“Nerve pain, of course, doesn’t show on X-Rays,” she said. “It took me four and a half years to receive an accurate diagnosis. The pain would come and go with no routine. I would be fantastic one minute; the next I was spasming, burning, couldn’t function.”

Soula damaged the way her pudendal nerve, which stems from the sacrum and is responsible for motor supply to the pelvic muscles, signals the brain. When she sits, drives, lifts something, or moves suddenly, the nerve creates pain signals for no reason.

“I tried Lyrica (anti-siezure medication), nerve inhibitors, Tramadol (an opioid),” Soula said. She couldn’t work. She tried lying on her stomach on the studio floor, unable complete more than 15 minutes of work at one time.

“I took anti-depressants but these lowered my mood overall. My pain levels shifted constantly, and my GP told me to increase the dose of pain medication until it felt better.”

Soula became dependent. “I shrunk as a person. The medication fogged my mind. I couldn’t cross the road. I had to activate spell check on my phone. I didn’t have the ability to think properly any more,” she said.

“The most horrific part of this was the breathing. I would wake up in the middle of the night and realise I hadn’t taken a breath in ages. I would take a huge breath and start to panic.”

Read the full story…

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Suck it up and smile – it’s holiday time!

Author:

Yippee!! Not! It’s too hard.

I was dreading Christmas – like I usually do. And I’m dreading New Year’s eve and day – as I usually do. And even though I would regard myself as ‘experienced’ and loaded with the best treatment possible, there seems to be no way of avoiding pain during holiday time.

Suck it up!? Um…,

No!

And that word my dear readers, is how I manage this holiday time.

I’ve learned it so well now it just rrrrrrrolls off my tongue and I loooove it because it’s always there for me and it keeps me HAAAAAPPY.

Here it is again:

Noooooooo

And with that comes,

I’m sorry, I can’t do ‘that’

With the truth being, I definitely can do ‘that’ but I have chosen (well sort of voluntarily obviously as I didn’t plan this bizarre accident) not to, because I don’t want the pain levels during – and after – I do the ‘that’.

There.

But of course it isn’t so easy. There are a few sad bits that come with ‘no’. (more…)

Time to exercise – but how?

Author:

It took six full months for me to feel I was ready to have my follow up appointment with Dr Nick Christelis after my Sacral Stimulation Implant.

I got a few ticks at the appointment:

  • Device incision healed
  • Leads incision healed
  • Both areas feeling cushy and a bit more robust
  • Honeymoon period helped with setting up the new life
  • I’ve learned a few of my new limits

I also got a few concerned looks expressing the following:

  • I’m more fatigued
  • I’m sad
  • I’m feeling like I can’t get up in the morning
  • My mood is really low
  • I feel I’m slipping
  • Sleep is a bit more disrupted than usual
  • I’m waking up anxious, breathless

We had a good chat. We agreed alot – especially about the need to find a way for me to exercise. I’m resting less now – no longer napping in the afternoon (a great thing!), so that means I’m moving more. But my heart rate isn’t really going up. It needs to.

In the nine years of chronic pain, I’ve tried a squillion routines and tricks in the attempt of finding some way of exercising without painful consequences.

Anything I attempt seems to translate as ‘too much pressure’ on my pelvis.

To understand what I mean, just imagine the feeling in your muscles after you’ve worked out at the gym. The muscles scream the day after (for various reasons). And the day after that – even more so.

But in that normal circumstance, the pain goes. With chronic pain it doesn’t go, in fact it manifests.

With PN there’s a further impact – signals and functions are affected and I get pretty uncomfortable. One thing leads to another and if I don’t listen to the signals, before I know it, I’m in a fire ball.

I’ve learned to listen (had a few nerve blocks, sat in loads of cold running water) and thankfully the fire balls don’t happen anymore. But other uncomfortable things still do happen – I just have to find another way.

This is what I’ve tried:

  • Walking in various amounts, strides, shoes, places, times and tracks
  • Yoga (which I sometimes practice but can’t sustain regularly)
  • Stretching (forget that!)
  • Various slow/resistance movements
  • Hydro therapy
  • Clinical Pilates
  • Meditation (not exactly heart rate lifting)
  • Dancing

Not only is none of the above possible but even if I could partake in any of the above (in my butterfly way), I’m hardly going to get my heart rate up enough. (more…)

Who am I going to be – Soula ‘a’, ‘b’ or ‘c’?

Author:
_Sacral_stim

My new stim’s changed everything.

I’m grateful. Can you imagine if the whole process (from trial to permanent implant) hadn’t change anything?

In addition to the stim changing everything, I’m living a whole new life that Theo and I attempted to plan in great detail.

We’re trying to make me the best I can be so we can be… someway, somehow.

Life is unrecognisable and the path ahead is totally unfamiliar. To top that off, I need to figure out exactly how I can best be. I have choices.

Post op

After living with my sacral stim for six months, I can confirm the following: (more…)

I’m part of Bridge For Pelvic Pain’s Advisory Committee

Author:

Bridge for Pelvic PainAnd I’m most honoured! To be recognised for my pelvic pain advocacy is one very exciting aspect, but to be invited to be part of a committee with a global vision, is quite an additional excitement. It appears my pain experience will definitely make a difference to others.

About Bridge For Pelvic Pain

Mission: Our mission is to connect the global community of chronic pelvic and sexual pain patients to resources, education and hope through an integrative approach. Vision: To bring hope, resources and knowledge to the pelvic and sexual pain community worldwide. (more…)

Pelvic Pain Foundation of Australia’s Melbourne launch

Author:
PPA Launch - Soula, Lorimer and Anne-Florence

After 4.5 years and desperate, Soula took a stab and emailed Lorimer Moseley who kindly replied and suggested she contact Anne-Florence Plante. Anne-Florence diagnosed Soula instantly.

Melbourne launch March 24, 2015

I was thrilled to be invited to The Pelvic Pain Foundation of Australia (PPFA) Melbourne launch last night. I originally met Dr Susan Evans when I was invited to present my patient story at AIM Pain 2014.  I had cyber met Dr Evans prior, asking if I could include her details on this website, in fact I’ve ‘e-met’ many pain professionals this way. I never dreamt that one day they may all be in the one room together, all of us advocating for pelvic pain and helping start up a National organisation that addresses pelvic pain for women AND MEN.

Needless to say, last night I went on a magic carpet ride! (more…)

Permission granted and now it’s back to reality!

Author:
Boxing Day Self Portrait For Theo

Or is it possible I never really left my reality? As if anyone can leave chronic pain behind and really have time off!

Sensing the cynical? I best write this post two ways. Technically, the permission ends on Thursday night when we head back to Melbourne so I’m going to post my brain’s two conflicting versions:

1. Crap thinking out-of-the-way first version

Pulling yourself out of life isn’t easy and especially if you’re forced to do it. I was forced and that force keeps on damn well forcing. It brought Theo and I to Tasmania for a four-month ‘sabbatical’ with the topic of research being chronic pain and how to live with it. Truth is, the topic has more likely been what the hell do we do now? It was also meant to somehow help me rid some more pain and pace up my driving, exercise and some daily chores. I was unsuccessful. (more…)

Committment, sacrifice and granting myself the right permissions

Author:

Soula In TassieLast week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that:

I am therapist free

Did I ever think this day would come? Of course I did and I believe that’s why I am here.

I have had my moments, but what I didn’t realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail’s shell weight, I began to make progress. (more…)

Theo, and his ‘carer’s’ perspective

Author:

Team Soula and Theo

The post many of you have been waiting for… Theo’s thoughts, sacrifices and life experience of his daily ‘caring’. I should add that Theo and I have been together almost 20 years, seven of those consumed with Pudendal Neuralgia (PN).

What does PN mean to you?

To me PN is a yet to be accepted condition that sufferers are unable to express and be understood for. I do not claim that I understand it/the symptoms but I believe that it is real. I see my wife live with it every day (and night).

How has PN changed your life?

More so it has changed our (Soula’s and mine) lives. Personally however, I feel I have the lucky end of the stick for I am still able-bodied and there to help my wife. Our ‘arguments’ always revolved around who could do more for the other. I guess I have come up on top in that respect, however, having to see Soula in pain takes a lot out of me. Learning to adjust with things like, walking slower, no sudden tickling, no jumping playfully into bed or sitting through a long dinner has taken time. You adjust. It’s the look in Soula’s eyes though that can see me having to adjust that saddens me most. I can’t help but feel that she feels responsible for me having to change my life. I always say to her, “What would you have done…?”

You don’t like yourself being referred to as Soula’s ‘carer’, please explain why.

I care for Soula however, I never consider myself her carer. A carer to me is someone somewhat detached. Soula is my wife, my life! If she were to catch a cold and needed a few days off her feet whilst I made her soup and tea, I would take that as caring for her but not as being her carer. I think this may be a language issue but I wanted to clarify. (more…)

I do I do I do believe in spooks, I do I do…!

Author:

Cowardly Lion drawing ©Soula MantalvanosIt’s my anniversary today. Seven years from the day my (and Theo’s) life changed. I’m heavily considering changing my beliefs… did I break a mirror?

I’m not superstitious, but if it means owning up to breaking a mirror I’d be more than happy to change my views. So long as at 11am today, this Pudendal Neuralgia (PN) issue goes away and my original, very well, non aching body, returns to my hardly affected exterior.

‘But hang on Soula, keep writing, unfold and expand those squally thoughts’, thoughts that flow from positive and grateful, into negative and hopeless, and end up reality checks that tell me, ‘well, you’re making progress‘. This is a mantra in my mind daily and I have to keep reminding myself that the mantra once was simply, ‘you’re getting worse‘. (more…)

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What is Pudendal Neuralgia (PN)?

Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggrevated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

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