Lived Experience Forum

[ivana]

I pretty much learnt to pick doctor/s extremely carefully even if it means waiting for an appointment because to try to change the mindsets of the doctors who are arrogant and unwilling to work as a team (often specialists are the worst) rarely works.

Is it G.P's or specialist who are fobbing you off?

What does SH stand for?

[Appleblossom]

SH on this site has generally stood for Self Harm I think ...

Good Idea. I will start out with new GP next week re teamwork rather than getting into my history to quickly.

I have had very few specialists (mostly psychiatrists), a couple very good GPs (a few bad) but I need to find a new one.

Recently transferred from Western General Nueroscience Clinic to Rheumatology?? I am very patient re appointments and most things in life.

[PD_Perhaps]

I have had an ECT done but it came back negative. I had an irregular heart beat after a tachycardia episode. The nurse felt my pulse and felt the same. The moment I was hooked up to the ECT monitor, I must have relaxed being in a safe environment and it went back to normal just before she pushed the button. The ECT came back normal...sigh. I had an EEG done many years ago but it came back negative. My understanding is that it isn't a precise means of diagnosing all forme of epilepsy. It is not a very reliable indicator when the symptoms are so subtle. As I am changing medication at the moment I am also experiencing possible peripheral neuropathy in my toes...it has spread from one toe to all four. I have experienced this before in situations that have put me under stress over longer periods of time. Interestingly my tachycardia episodes were generally associated when I was doing things such as sport and had bursts of adrenalin. I used relaxation techniques and get a large thump and my heart would go back to normal. Since I have stopped a lot of the higher physical type activity for some years now because of my age and inability to travel far, they have stopped. Photosensitivity was also one symptom I teased out...it to can be related to the vagus nerve from the journals I have read. By wearing sunglasses, I can reduce the anxiety level a little when driving particularly...if you consider the flicker through trees from the sunlight, again we have a possible link to the autonomic nervous system. I used to dread the onset of summer.I became quite cynical about the system some years ago. Many doctors either weren't familiar with the autonomic system or they had a "god complex" and didn't like being questioned. I gave up until now...now I have mission impossible.....try and convince the medical establishment that my panic disorder has a primary cause in the autonomic system...so far I haven't convinced him. I feel I have to write a thesis to convince him...but then he'll think I'm quite mad! 😞 I shall read the link. Thankyou for taking the time to respond to my question...you also take care. 🙂

[PD_Perhaps]

It is a GP with extensive psychiatric experience. I am unsure if he is being secretive and seeing if I write up a thesis or something to prove myself or he just can't handle that I may know a little more than him in regards to the vagus nerve and current technologies. I am still waiting on my appointment with my psychiatrist . I hope he is a little more interested in the different modality of my PD. I will have to be patient.

[Appleblossom]

 I am not as technical at analysing things as you are, but can relate to the photosensitivity issue..

For a few years I drove without sunglasses and when I finally had a good set of prescription sunglasses made.  I could really feel the difference ... so much less stress on the eye muscles and head and neck. I almost felt like my eyes were being massaged by looking through a good lense ... weird.

[ivana]

Just curious have you ever tried anticonvulsants(im  not allowed to state on the forum brain names)?

Your right about the EEGS.Ive had numerous EEGs which have come out both "normal" and with abnormal findings.

Did you see your EEG's yourself/have the reports?

[PD_Perhaps]

I am still in the process of asserting myself. I can be quite insistent!

[PD_Perhaps]

It is a GP with extensive psychiatric experience. I haven't fobbed him off at this stage. I am waiting on an appointment with my psychiatrist. As I am a partially functional agoraphobic I cannot see a nerve specialist. Hence I have come up with a novel approach using HRV and a vagus nerve stimulator....unfortunately not approved in Australia yet as it has only just come out this year...it is not an implant.

[PD_Perhaps]

SH ? It could be an acronym that stand for many things. Why do you ask?

[PD_Perhaps]

Oh...next post says Self Harm...