Shepard1

Great to hear!  

@Derek1987 It is a dinky little thing that fan.  A good idea to have one that is compact too.   I have a hand held fan that can be tiring on the hands and arms.

Welcome to the forum, there are a couple of Specialists mentioned in posting from 2016 by Macca which I hope will help

https://www.dinet.org/forums/topic/27846-specialists-in-australia/

@Sarasw  If you have primary aldosteronism then your thirst symptoms may reflect that you are hypokalemic ( low potassium levels) - from what I understand - which means you would need to seek medical assistance and review urgently.  Hypokalemia can cause cardiac arrhythmia and serious threat to life.

Other Symptoms ....

• Weakness
• Cardiac arrhythmia's
• Muscle cramps
• Excess thirst or urination

Hope you are okay.

On 4/1/2019 at 3:12 AM, p8d said:

I wonder if anyone is on statins and if they have helped.

I am now on a statin (day two).  I have taken them at night and for the last two mornings I have been a box of birds.  Significant change to my normal morning routine.  Can't seen anywhere in the study about statins.  May have missed that part though. 

Will keep you all in touch of my progress

2 hours ago, Derek1987 said:

What does a geneticist do? Keep me posted. Sounds like I really need to motivate myself to go there. 

Is a person who studies genetics.

https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome

This is the first I have heard that some medical teams are seeing a pattern emerging.  

I am also pro-vaccination, however stopped having the flu vac back in about 2007  after becoming very ill about 3 months post vaccination.    On my third year of flu vaccination I noticed a correlation with time frames of illness post flu vac.  I don't seem to have a problems with other vaccinations, as a couple of years ago had the whooping cough vaccination with no adverse effects.   So decided to stop yearly flu vax, I felt that my immune system got stressed, leaving me vulnerable to picking up a infection.  

 Since then I have not had any similar illness (pneumonia etc) I have not needed to take antibiotics for secondary bacterial infection for at least 10 years now.

I guess if you have had the flu vax in the past with no issues then that is a bonus.

Some amazing accomplishes!   It is times like these that having a like button would be really handy!

At work while talking to a client, I got really severe abdominal pain out of the blue.  I managed to stay focused, even when feeling pain and light headed - with the client non the wiser.   The pain went as quickly as it arrived.

For us POTTies, bleeding heart flower .....

I gave up on monitoring my BP closely a long time ago manly because I just want to have some normality.   I too got very tired of it all.   My way of thinking that is okay every so often. 😀 

Jim I also really like peonies, I really wanted to grow a couple of plants but my climate zone is too hot unfortunately.

55 minutes ago, Pistol said:

Thanks @Shepard1 - beautiful picture!!! -- I love Orchids and Bluets. 

Bluets are very pretty and delicate.

Orchids can be quite interesting flower, like the Ballerina Orchid

or the Monkey Orchid

I really like this flower field of Russell Lupins.  Fiordland National Park in New Zealand.

I enjoyed the videos, quite funny.

16 hours ago, bombsh3ll said:

That would be a sensible precaution but depends a lot on other factors, for example if you are female under 30, non smoker and no family history of early cardiovascular disease, you are unlikely to have arteriopathy. 

If you are male, diabetic, overweight and over say 40 years old, smoke etc it becomes much more of a concern. 

Were you given any specific recommendations regarding compression at the time of dysautonomia diagnosis? They can be expensive to buy so if you can get a prescription it helps. 

I wear class 2 activa knee high stockings underneath, and class 2 waist high sigvaris compression tights over the top. The former help the latter slide on easily and provide a bit extra compression. 

I can understand however that if you live in a warm climate this may not be comfortable or appropriate. 

I personally do not seem to gain much benefit from them, perhaps slightly and they are comfortable so I continue to wear them, however I do not have any swelling or discoloration suggesting pooling, whereas if you do, you may have more to gain. 

B xxx

True, but I have no idea how old the OP is.  Best to ere on the side of precaution.  Worst case scenario with peripheral arterial disease and wearing compression therapy is compressing arteries causing ischemia and digit or limb death.  

I have worn compression waist high, but had to stop as my bladder was being irritated.  

9 hours ago, gnnmi said:

I am newly diagnosed with dysautonomia and had a difficult time visiting higher elevation, had to leave early due to weakness, nausea and headache. As I drove to lower elevation I began to sweat buckets. My clothing was soaked. I am taking this all more seriously and looking into compression garments for future trips. How do I know whether to get tops or bottoms? Does blood pool in only one or the other, or both? My. feet swell and turn red and I often feel slightly bloated but am not sure. I also have neuropathy.  Will the compression garments exacerbate it? Thanks.

 

Symptoms that one would experience at high altitude include, nausea, headache and fatigue - some suffer from this at a worse extent than others.  Can occur as low as 8,000 feet. There are other more serious symptoms that can be felt when at higher altitudes.   If you have go visiting then ascend slowly, normal recommendation is over a couple of days. If you find that you were breathing faster and more deeply indicates that you went to high altitude too quickly. Adrenaline levels do increase in the early phases of exposure to high altitude, Low hemoglobin blood levels will impact on symptoms.

Compression 30-40 mmHG is considered full compression,  it is effective providing you don't have arterial insufficiency.   Providing you put on the hosiery on in the morning, it should stop you feet from swelling and help with any aches due to the swelling.  Caution is need though with severe neuropathy.  With the loss of that protective sensation, increases risk of hosiery skin damage.   I would recommend discussing with your doctor as full compression may be too high for you.    It would be safe to say that a review by a vascular surgeon or a Doppler assessment to obtain your ankle brachial index (ABI) which will identify if you have any arterial component to your neuropathy.  

I am too a tummy sleeper and tried raising the head of the bed, but was able to feel the slight slope to discontinued.  Wouldn't say it worked.   I also wake up with either sweating or nausea.  I have a fan next to my bed that I turn on when I wake up sweating.  It helps a lot.  I also set my alarm earlier than I used to for work,  then put the alarm on for the right time.  I do this so some symptoms like nausea and sweating from rousing can settle a little before getting up for real.   In the early days, I used to have deal with raised HR, severe sweating  with nausea and vomiting.  Pleased that I am not going through that again.

Hope things settle for you. 😊

It could be that normally you get up and start moving and with your leg muscles moving means you are moving blood around.  Standing still, allows for blood to pool in the legs causing dizzyness.  There are so many variables with dysautonomia  that sometimes it can be difficult to discern the cause.    I don't always get dizzy on standing either.  Yet some days I just do.  

I used to get head pain on movement when I had headaches.   Mentioned them to a neurologist who felt it was a migraine not headaches.   I get slurred speech when I am tired but is not related to a painful head.   Not sure what to make of peripheral vision movements.  May need to discuss your symptoms with your doctor. 

Thanks @KiminOrlando , I will get the panels retested when I next see my doctor.    I am not sure that they will be happy for ongoing testing when negative.     Age could be a factor @Pistol, but Mum does not feel I should be stiff when I am so active.   She feels that I should be fit and mobile at my age especially with the amount of activity I do.

This stiffness came on about 8 months after diagnosis.

I did have a full rheumatology panel many years ago that was NAD.  Something was high but another test it was back normal.  

Since mid last year I have developed stiffness in my muscles/tendons after I have rested or after waking up in the morning.    I lead a very active lifestyle that also include stretching when exercising.  I walk 4-5 km 6 days a week with plenty of hill walking.   So by rights I should be quite fit and with stretches quite supple.

On standing it takes me a while to stand upright and moving forward I remain stooped for a step or two.  It is just not my lower back, my hips, knees ankles and Achilles tendons are stiff too.  Although it has been bothersome once moving the stiffness improves. 

I have as most of you, I ignored and moved on.  I tend to get fleeting new issues that come and go.   Recently I have experience neuropathy like symptoms where I get cold water sensation run down my back, splattered drops of water on my arms or legs.  EMG came back normal 2 years ago.

I had a scare last week after doing some work that required me to kneel a couple of times, it wasn't hard kneeling.  After about the tenth time I developed significant pain and weakness in both my quads muscles.   Both my quad muscles could not control my ability to control me to sit down,  I went plop.    I had to rock myself up or pull myself up from the chair.   When I went down some steps I was able to lock my knees quickly before they gave way.   This happen twice and terrified me.  Falling down steps does not appeal to me.   I did check my own

It took a couple of days for my quads to settle down, I needed to massage and stretch them.  I thought that over use of my quad's may have been the problem, but I have never in my all my years ever experienced such.  I did my own deep tendon reflex test all normal. 

I wondered if anyone could cast light or had experience with stiffness, short term muscle weakness, pain and cold water sensations (neuropathy).   I am not sure if I should just leave these issues until some more significant arises. 

What are your thoughts and experiences?

I am pleased to hear you are feeling better at the moment.   I would suggest using a digital thermometer, so you can diary your temperature and report back to the GP perhaps include heart rate too.   With objective information, may help your doctor in discerning causes of the fevers.    I had to do this with my temperature, BP and pulse as concerned that I would not be heard by medical staff. 

22 hours ago, Derek1987 said:

I was out for 2 hours Monday because I had a doctor's appointment. And I am feeling tortured in recovering. It comes in waves. I have a small fever. I notice I get small fevers here and there. Sort of feels like the flu is coming on but never does. It's hard to sleep feeling so ill. Any idea on what this means? or am I just screwed up and nobody knows and it's part of the game? lol.

What is your actual temperature when feel off colour.   GP practice waiting rooms can be a nightmare if you are prone in picking up bugs easily.  Many years I dreaded my son getting sick after hours because when I took him to the after hour doctors I would end up very ill the next day with not my son's bug but something I picked up the the waiting room.

In my late teen's I got a severe bout of glandular fever (40.3 C/104.5F)  and early twenties I used to have high spikes in temps with sometimes feeling off 39C/102F but not always.  It was felt that the wide range of temperatures where due to a brain stem reset as my breathing was also affected.   In my 30's these temperature spikes ceased.  Not long after getting diagnosed with dysautonomia I by accident discovered that these non-infection related temps had restarted again 39C/102F

If achy maybe you picked up some bug some were.  Hope you feel better soon.

The smiling goat is hilarious!   Wonderful pictures.  How are they doing now?