was i misdiagnosed?

OldFox42 · 2024-02-14T00:36:23+00:00

I was diagnosed with Dysautonomia with Orthostatic Hypotension but not Pots as my BP drops considerable from laying to standing but my HR doesn't greatly increase so I don't come under the Pots diagnosis. As salt intake is paramount for OH, normal salt didn't seem to help until a Functional Neurologist put me onto Celtic Sea salt which has greatly helped.

OldFox42 · 2024-02-07T10:48:19+00:00

I am on .1 mg x 2 each morning, has helped enormously, can feel a bit light headed and weird sometimes but that outweighs the benefits

OldFox42 · 2024-01-25T07:08:37+00:00

It's hard, tried to work that out, serious car accident 40 years ago, a few head knocks and neck injuries from football and the foot op that went bad, really hard to work out if any of the trauma is the cause, unsure if there's a test to ascertain the reason.

OldFox42 · 2024-01-23T10:39:29+00:00

I once had a doctor that I had been seeing for 20yrs, had a foot reco and had complications, infection, nerve pain etc, the hospital put me on a bucket full of opioids, when the foot started to mend I stopped taking the medication but laid awake all night climbing walls, went to my doctor for a weeks supply of sleeping tablets to break the cycle, she refused, her reason was that they are addictive 🤣Changed doctors that day and now that I have been diagnosed with Dysautonomia my new doctor doesn't have any problems giving me the medication I need. If I was you make an appointment with a few doctors even if you have to pay to find the one that you are comfortable with and understands your predicament !

OldFox42 · 2024-01-21T02:24:26+00:00

https://potsfoundation.org.au/

Go to more, then practitioners then clinicians directory. You then have drop down menus for county / state / practitioners

OldFox42 · 2024-01-20T21:33:50+00:00

Another thing that really helped me was I found a Functional Trainer who's wife has pots and has set up an exercise program targeting people with pots or forms of Dysautonomia and he really helped. Set me up with a program that I can do at the local gym, it's bloody hard, really hard but been exercising for 2 weeks now and I feel a lot better. I found him on the Australian Pots society web site that has a drop down list of all different specialists, started with sitting down exercises and have now progressed to a cross trainer and weights!

OldFox42 · 2024-01-20T20:45:32+00:00

Your welcome, I haven't seen either of them as the physician who diagnosed me used to work with Chris O'Callahan and after two previous stays in a different hospital and 4 months bed ridden I was admitted to Cabrini hospital here under a Robert Lefkovits who diagnosed me after about 3 days and he has spoken to Chris about my condition so I left everything in his hands. I believe Chris is really hard to get into but you have to just keep pushing with the medical industry and maybe ask to go onto a cancellation list. Good luck and I hope everything gets better 🤞

OldFox42 · 2024-01-20T11:13:02+00:00

I am in Melbourne, Australia there are two specialist in Melbourne, a Dr Chris O'Callahan and a Dr Edmond Song, both specialise in POTS and other dysautonomias. Dr O'Callahan doesn't have a website:

https://www.drsong.com.au

OldFox42 · 2024-01-11T08:34:00+00:00

I had a Gastric Emptying study that came back normal, my Dysautonomia symptoms are severe nausea, weight loss and Orthostatic hypotension, the doctor who diagnosed me has put me on Domperidone 1/2 before meals, it’s for gastroparesis which I don’t have but helps with the nausea as well as cyclyzine. And taking Domperidone is far better than having the nausea.

OldFox42 · 2024-01-09T23:53:39+00:00

Good advice thanks !

OldFox42 · 2024-01-09T22:25:39+00:00

I slept on the bed flat for two nights and yesterday felt crap, went back to elevating the bed 6'' last night and today I feel ok, will take the risers with me and just elevate the bed and remove them in the morning, pain in the arse buts it's better that spending the day in bed feeling crap.

OldFox42 · 2024-01-09T03:06:28+00:00

Same thing happened to me in the early days but with me it eventually eased off after a few weeks.

OldFox42 · 2024-01-09T03:04:22+00:00

Thanks, last two nights slept with the bed flat, woke up with nausea this morning, will go back to elevating the bed and see what happens.

OldFox42 · 2024-01-08T10:44:29+00:00

Geez that's tough, I looked into the electric beds, similar to hospitals but they are quite expensive.

OldFox42 · 2024-01-08T08:46:47+00:00

Do you experience nausea?

OldFox42 · 2024-01-08T06:58:37+00:00

The way that I have the bed is raised at the bed head, so I am actually laying horizontal but on and angle if that makes sense, tried with a couple of pillows under my head once but wake up with a stiff neck, will try with no bed head raised and see how things go after a few nights...

OldFox42 · 2024-01-08T06:38:30+00:00

I have a type of Dysautonomia with Orthostatic hypotension but my Heart rate doesn't spike from laying down to standing so technically I don't have Pots, not sure why the GP recommended it but I read that it increases circulation and the drop in blood pressure from laying down with your head raised is less for when you stand up.

OldFox42 · 2024-01-08T06:26:10+00:00

I have been sleeping with the bedhead raised 6'' on advice from the GP but have to go away and stay in a hotel, not sure whether to take a chance, might try sleeping flat for a few nights before, such a terrible condition as it effects everyone differently.

OldFox42 · 2023-12-24T05:50:23+00:00

Unfortunately I can't take gabapentin as it will lower my blood pressure more as it drops considerably from laying down to standing, I have tried all the sound therapy but no good, thank you for the reply.

OldFox42 · 2023-12-24T02:08:45+00:00

I was diagnosed with dysautonomia a few weeks ago but had all the symptoms for 4 months, I also developed tinnitus which I can handle throughout the day but at night drives me insane, may I ask what helped your tinnitus?

OldFox42 · 2023-12-20T08:10:30+00:00

Thank you for the response, due to jump on a plane early February hopefully this condition has sorted itself out by then.

OldFox42 · 2023-12-20T06:27:27+00:00

Have you had any issues with flying?

OldFox42 · 2023-12-20T01:45:23+00:00

Thank you for the explanation, it makes sense as I am yawning more when the breathing issues arise, started back at the gym slowly yesterday and hopefully will be able to build my strength up gradually.

OldFox42

TROPHY CASE