Dysautonomia

Cheyne, this sounds impossible to live with. There is a newer treatment. I don't know if it works.
https://www.synergyhealthconcepts.com/dysautonomia-3/#:~:text=TVAM%20(Transvascular%20Autonomic%20Modulation)%20is,fibers%20surrounding%20the%20jugular%20vein.
You might try https://thedysautonomiaproject.org/dysautonomia/ to find a provider.
https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/symptoms-causes/syc-20356153
wishing you lots of good luck

This doesn’t sound like Dysautonomia. My husband had it last year and was hospitalized, then in rehab for three weeks. It was uncontrolled blood pressure, extremely high, then extremely low (fainting spells, etc). It took a long time to correct, and many different medications, but it’s under control now. His cardiologist recommended that he only take his blood pressure standing up, and that’s the number they use to medicate him. It seems to work.

This is some of the most helpful new info I’ve seen on dysautonomia-thank you!
If you become aware of new information we’d appreciate it. THANK YOU!

I have form of autonomous dysfunction also. I am being treated with medication which is helping. He mentioned going to a specialist here:
https://www.vumc.org/autonomic-dysfunction-center/vanderbilt-autonomic-dysfunction
Maybe you can look into it.

Hi,
Dysautonomia is incurable and untreatable, all one can expect is to have some of the symptoms treated, not the cause. I have been through over 30 different medications unsuccessfully and countless tests and investigations and been diagnosed as Dysauntonomia, in particular Autonomic polyneuropathy. Which means both main nervous systems are corrupted. Thankfully it doesn't affect the heart too much but has made my BP untreatable for fear it could make the drops far too low without warning, requiring emergency intervention. While I can sustain BP 240/145 it is deemed that not running the risk of BP drop is the best option. I am currently medicated and not very successfully for bowel and bladder issues directly related to Dysautonomia.
Dysautonomia is the collective title for many conditions which even the so called experts stuggle to recognise. It takes a specialist in this field to recognise and diagnose, which there are few.
Cheers

Hi,
Thank you.
It appears this treatment is of the symptoms only. The underlying cause is not touched.
Cheers

Hi,
Thank you, done.
CHeers

Hi,
Some of the symptoms I put up with as I only have an alternative of suicide for the moment.
As I said my complete digestive system is corrupted which means there is not a lot I can eat without side effects while trying to control my diet for T2, CKD, IBS and now Dysautonomia. This also includes a building intolerance to most medications. My diet is based on no salt, more salt, no sugar, sugar is fine, no spices some are fine and lets not forget no fun with food. You get the picture each health issues dietry requirments contradicts each other. Rule of thumb suck it and see, sticking with what appears to work for me regardless of the experts who don't understand how to deal with multiple dietry restrictions all at once.
For the digestive system I have to limit the amount of food and fluid I can eat in a day as the digestion is so slow the gut gets overloaded and I start to experience stomach acid in the mouth stripping the skin from my lips. No amount of medication has been able to stop this happening.
I'm unable to get past constipation effects. The stools are not rock hard but are medium consistancy. I'm unable to empty the bowel as the relavent muscles struggle to do the task easily.
For the bladder the urge is there but not the force. This gets a little better as the day progresses. I'm medicated for digestive symptoms which has had a sde effect of helping empty the bladder, something the specialist was completely unaware of. Forutnately being male I have the ability to squeeze out the urine. Luckily I'm not incontinent, yet.
I have to be most particular about what I try to eat. All the favourites are no longer tolerated, tomato, cabbage, lettuce, any cooking oils or butter for cooking. I'm not supposed to be able to have bread but it has proven to be non toxic to my stomach as has small amounts of raw onion. I react to even a water flavouring and we don't know why. That is the constant battle with bouts of going into SIBO state from pure food getting into the lower intestine. Uncontrollable BP and trouble controlling my glucose levels, both being high for over 30 years so likely a cause of the dysautonomia with a severe bout of Champylobacta wrecking my kidneys and being the lattest nail in the coffin.
I get bouts of these symptoms usually worse in the AM.
Blurry vison, vertigo constantly of varing strengths from not being able to move to just in the background waiting to flip me on my rear. Memory lapses, on one occasion unable to remember how to speak, very short term thankfully, lose of words when speaking, totally unable to understand the written or spoken words, Temporary paralysis, worst being both feet locked to the floor mid step unable to move from the waist down, no amount of will, cursing or determination could move a muscle until it resolved itself shortly later. Constant feeling of acid in the stomach and definitely strong hunger pangs always. Inability to walk a straight line, so far not been charge with being drunk in charge of a footpath! Various aches and pains all over the body including stroke or heart attack symptoms, continually carted off the ED but now I refuse to go. Unable to regulate my body temp30% of the time and no longer tolerate summer heat. I have times when the body sweats profusly for no apparent reason, it can soak my entire bedding or cloths with shortness of breath and usually raised body temerature. My Dr and hospital didn't believe me until I hapend to be out side the surgery when one happened. Now they know just how like a heart attack I can get. Slow eye adaption to light changes, dislike of strong light, noise intolerance with bass sounds making me ill. Stiffness to the lower body after sleep or sitting for some time. Unable to get more than 4 hours sleep at a tme if I'm lucky. After using opioid pain killers I can get 6 hours sleep but refrain from taking them unless I can't put up with the intense migranes I get, constant use of paracetamol for headaches. I have to control the physical activity I do as this can trigger multiple symptoms to flare. Through all of this I can still manage to walk 10 Km when I have to. I don't know how or why I'm able to maintain my weight, what I'm eating shouldn't be able to sustain my strength or stamina but it does and has done for over a year now. Axiety and depression are consequences of this disease and I'm constantly beraged with a psycological label. I find my hand eye cooredination suffers as does my dexterity which is really disaterous for a former instrument and watchmaker with supreme dexterity. I also find my spelling and grammer are suffering.
No doubt I have forgotten some issues but this is the best I can do for the moment coming off a bad day.
The most importnat thing I have learnt is to control my physical activities to tolerable levels and keep myself busy, not letting the mind wonder to thoughts of my health or I will stew in my own fat making it worse.
I cope with it all because I have to, the alternative is not an option for me yet. The realisation that we all die eventually tempers the anger of why me, sooner or later we can't control it happens when it happens. Just fill in the time as best I can, I can't sit around waiting. As my wife says, you walk, talk and argue, you're feeling OK today!
That I can't argue with, or maybe just don't want to chance my luck!
It is not all doom and gloom there are still some good moments although I notice they are tending to become fewer.
Cheers