Dysautonomia Diagnosis Update – 2014

As May is EDS Awareness month and I was asked to do an update on my Diagnosis story to share with you all to try to raise a little awareness of the condition, here I am once again, another year later, 2014 already and lots has indeed happened in the last year that I can add onto the overall diagnosis story.

If you would like to read 2013’s update and the full background of my diagnosis, you may find that here.

So I will give you a brief background to get going, then the updates from the last year or so.

In April 2011, after nearly a month in hospital and numerous medical tests,Β  a Tilt Table Test confirmed a diagnosed of Postural Orthostatic Tachycardia Syndrome and Neurocardiogenic Syncope also called Vasovagal Response.

In October 2012 I was diagnosed by a Reumatologist in Cork that I had Ehlers Danlos Syndrome Type 3 Hypermobility Type, which in turn would be the organic cause of the Pots.

My symptoms and signs at the time, and still do consist of Syncope (Fainting) sometimes with no breathing and with seizure like activity, It has happened countless times now, and some of the serious fainting without breathing has caused short term paralysis in my legs and lasting neuropathy. I have Very Low Blood Pressure, Dizziness, Severe Nausea and tummy/gut trouble and vomiting, Excessive fatigue, Costochondritis, Easy Bruising, Blue Sclera, Severe pains in my Joints mainly in the lower limbs, back and right shoulder.

I take 18 tablets a day, 8 different kinds spread out over 3 times a day.

Last year saw a big improvement in my health that I was just feeling well and fit enough at the start of the summer to think about applying for jobs once again, then in April 2013 I had an interview, they called me for a second interview and I landed the job. It was perfect. I worked from home, on a set schedule where I had to sign in online at a certain time and be available to give tech support to customers calling in. All tech was provided, I won’t name the company but needless to say, I adored the job. I worked hard, I was actually doing really well and made lots of friends.

Everything was going amazing until my Pots started acting up, sometimes I had to put people on hold as I hacked into a bucket! The pain in my pelvis, hips and lower limbs became so much that crutches no longer supported me well enough.

In August I was in a wheelchair, In September I was admitted to hospital for 11 days for investigations and pain management. The specialist advised that I didn’t return to work.

I was in a little shock I think, the job was just working out, then out of nowhere…
We had to take time to let it all sink in, it did, we had our ‘Why Me?‘ moment, yes, I just did that! πŸ˜€ and then I realised I had to sort everything out, like work, social welfare, adaptations, treatment like Physio & Hydro Therapy, Occupational Therapist, Pain Management, Learning to live needing a wheelchair, for now at least (I live in hope, but I’m not delusional!!) πŸ˜‰ :p

There was just one morning after I got home from the hospital and had let it sink in where, I just said, screw this, it’s not going to do it’s self! Keith and I got to making lots of phonecalls and got an Occupational Therapist and Physiotherapist on the go, I rang to end work and get all that sorted and only started going about the process of applying for certain social welfare and home needs which to my surprise had been cut substantially from what had been expected. Only in recent weeks have I been told that I will not hear anything back from the Housing Adaptation Grants (if at all) until ‘at least’ 2015!

My Occupational Therapist is amazing, so utterly helpful and always tries to do what she can, My physio is also very helpful but unfortunately I only get to see him roughly once or twice a month. I had started Hydrotherapy, found it very helpful but then had a syncope in the pool and that was the end of that! So for now, I am not getting much in the way of physical progression with my legs, though I do hope to try and get referred to Harolds Cross in Dublin, where they do intensive, in house, Occupational, Physio and Hydro therapy, while you are accommodated at the hospital for careful monitoring, but we will wait and see!

What a lot of people don’t realise is that, there are NO Dysautonomia specialists anywhereΒ  in Ireland, some have a bit of knowledge around Pots but not EDS and NONE have been trained specifically to treat these conditions, so treatment is more of a mix of everything they think you need, a stab in the dark, and then there is no communication between the different doctors that are treating you. The closest specialist Autonomic center and Qualified Specialists in the field of Dysautonomia are in London and the HSE simply doesn’t want to know about sending you over to get the treatment you need. They are also refusing the Travel Abroad Scheme to the majority of people who apply for it. To go over privately is simply not an option for the majority of us as we simply cant afford it.

Since being diagnosed with Pots originally in April 2011 and EDS in October 2012, I still faint, I also have syncopies where I can have seizure like activity and I can stop breathing with all faints, Some of which have left me with paralysis and long term muscle neuropathy. I constantly have pain and often severe gut and tummy trouble with the EDS and it’s complications. I am now in a wheelchair a year come August and I have had many ambulance rides, rushing me into emergency and I still regularly have many hospital stays, visits and appointments.

but you know what? I count myself lucky! Things could always be far worse and I am very lucky and endlessly thankful for certain people in my life, Namely, my husband, I would be truly lost without him ❀

My family and friends deserve saint and knighthoods for their patience with me as I can never commit to anything, but such things are out of everyones control.

For now I keep myself busy and roll with whatever is thrown at me!

Thank you for reading my story πŸ™‚

 

 

 

 

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10 thoughts on “Dysautonomia Diagnosis Update – 2014

  1. I hear ya- we have a lot of similarities. I was diagnosed in 1996 with the TTT. dropped to 44/16. I’m also diabetic, and have neuropathy from that as well, and had chemo for 19 months (daily meds- either IV or oral) for leukemia which has made the dysautonomia worse. It’s SO frustrating ! I’ve been disabled for 10 years now (I’m an RN). People don’t understand since we all look pretty normal :/ Keep blogging, and get support from people who ‘get it’ !! πŸ™‚

      • Well, I’m getting worse (somewhat expected after chemo for leukemia). But, I hang in there. Peri-menopause is also throwing a wrench into things 😦 I still have a lot to be thankful for.

  2. I applaud your positive attitude.
    I am so frustrated – living in the US, I cannot get the level of care or concern about my sx that you have recd, or that others receive in Oz and NZ.
    I have sx very similar to yours, and despite my test results, I have had nothing but negativity and rudeness from the docs. They insist I “must be doing SOMETHING (inferring illegal drugs) to cause” my sx…and then tell me that there are no meds to take care of my sx – I do the research – YES THERE ARE!!!!! I am just a 50 yr old useless mess. I try to do stuff and fail. Nothing is worse than driving somewhere, then getting a symptom flare and not being able to drive home – but – I have to get home- so I have to drive in a condition that I should not. Or, I wait until I feel better, then end up in the middle of traffic…which aggravates my sx more.
    I am so tired of hearing people tell me “try this” “try that” – like I am an idiot and haven’t. They think I can just think my problems away. (Even my husband acts like this at times-he tells me not to think about how I feel and I will be ok). It’s quite maddening and highly insulting. I truly hate my life.
    I’m currently trying transcranial magnetic stim for the depression that has resulted from having my life stolen by my 3 conditions. It is a 6 wk process…only about 50% of the people gain benefit. This is my only choice since I can’t take any of the usual meds due to side effects since I developed dysautonomia.
    Consider yourself lucky to be lubing where you do…the US is WAY behind in understanding and treating this condition. Literally 95% of the healthcare providers I go to have never heard of dysautonomia.

    • and even here it is not well known at all. There is not one specific specialist on dysautonomia anywhere in Ireland. Our closest treatment is London, and that is just too expensive for the majority. Hopefully we, as patients, can help spread the awareness and educate people.

      I do agree though, I do consider myself lucky not to be in the american health system 😦 Things could be a lot worse here, and I believe I have had my life saved more than once at this stage so I put my faith in the feckers at the end of the day! :p

      I write about my experiences for exactly that reason, because people feel so alone. The doctors and hospitals are under resourced and uneducated in the condition and its co-morbid symptoms. What irks me the most is that some of them are just unwilling to learn too!

      I hope your treatment starts to work for you soon and you start feeling better ❀
      thank you as always for taking the time to pop by πŸ™‚

  3. Hi Lette, I wanted to post to anyone in the US, there are two doctors in Toledo Ohio, Dr Blair Grubb and Dr Beverly Karabin CRNP. I have the same diagnosis as you and these people know about Dysautonomia. Beverly is who gave me the diagnosis, Dr Grubb does a lot of research in this area. If in the area there is a hotel next to the facility that will give a discount to patients. I have been to see her once and she gave me a plan of different medications to try to optimize care. I went through at least 4 different doctors and asked about hormones having anything to do with why at 41 I became symptomatic everyday and all the male doctors said no. Beverly said it has everything to do with your hormones. I am just like Lette with 2 fairly good weeks and 2 bad weeks. Keeping trying to find the right fit of physician for you. It may be possible that if you contact Dr Grubb’s office at the University of Toledo Medical Center they could direct you to a specialist in your area.

  4. Thank you Lette for being a resource and helping me feel like I am not alone in this weird diagnosis. It has also been helpful to speak to my cardiologist that there are similar cases. Keep on blogging, it is appreciated!

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