In this part we speak about Pure Autonomic Failure and the variations of blood pressure issues that arise with any type of autonomic dysfunction.
In particular – dizziness among other symptoms usually worsen in the morning, when walking, after eating, after exercise, in hot weather, and at high altitudes.
“Signs of PAF include a fall in blood pressure by more than 20 systolic or 10 mm diastolic after at least 1 minute of standing”
– Source DAF.
I experience a fall in blood pressure by 30+ mm upon sitting after laying flat down. Then a further drop upon standing.
Where does the blood pressure fit in?
Lets refresh the memory. The Autonomic Nervous System controls blood vessel expansion and constriction.
So our blood vessels don’t tighten when they’re supposed to, thus leading to pools in the lower extremities – as it tries, but nonetheless fails to maintain a steady and equal flow to the brain and other organs.
I elaborated on the topic of low blood volume and Isotonic Hypovolemia in the following chapter 👇
Then heart pumping issues make the BP situation more complex.
BP is kept stable by increasing salt, fluids, following a prescribed excercise / movement regimen suitable for your individual condition. No one method works for all because we’re affected similarly but differently.
Now let’s dissect the complications involved which brings me to recent updates.
Approximately 2 liters somewhat is recommended. But I also have fluid restrictions with Pulmonary Edema. So I drink 1 liter and sometimes go over to 1 and a half. However, on those days there’s marked breathing difficulty that follows the additional fluid intake.
My Dr has approved of approx 5 glasses a day max. Considering body mass as well.
Gastroparesis also makes the fluid increase challenging because it’s restricts the full recommended intake.
Coconut or as some say (taropa) water is an essential part of my “survival list” because it supplements the body with all the necessary electrolytes and minerals in order to keep the fluid volume more “stable”. When my coconut supply depletes, there’s a noticeable difference with all symptoms – including increased dizziness, pulse rate & syncope. So now we ensure there’s enough to keep me going for one week at a time.
May the Almighty reward all the kind individuals who volunteered and insisted on bringing the coconuts for me.
Then as a backup I keep this particular one on hand. After trying various ones, I found that the Kara Coco tastes closest to the original coconuts water.
Salt is fine. But if someone has retention issues, they should please check with a Dr.
Advocate Aaliya recommended this as well
Many find that it assists a great deal especially if they need to be up and about. There aren’t cotton compression stockings available, so Dr taught me to tie a piece of cotton material from the ankle upwards until before the knee. Before tying the material the legs should be elevated for 10 minutes, and don’t tie it so stiff that the veins begin to bulge.
A bandage can also be wrapped under the material to prevent it from slipping around, depending on the fabric.
I posted about the combination my physio and chiro have constructed.
Because of the cardiac side, I am unable to do the recommended POTS protocol which normal potsies are able to do for the improvement of their long term condition.
Alhamdulillah with all spiritual practices included, medication, fluids, movement, and the above keeps me stable. Besides the occasional syncope, angina episodes, and other factors such as weather / atmospheric changes.
Now since February, things have gone totally out of sync and control. We were battling to raise my BP.
Dr kept monitoring and keeping observation on my progress, but then she became concerned when the systolic stayed in the 80s – to initial 90s – and diastolic between the 40s – 50s with no excercise.
Excercise then dropped the BP lower than it usually is.
The systolic number fluctuates constantly during meal times, shock, excercise etc.
Dr said: “The diastolic number is more of a stable one that moves around less. When this one starts to move significantly above 85 or below 60, it signals attention.
Don’t waste time. Ask the pharmacist to prescribe something more effective.”
What does Systolic & Diastolic represent?
While I awaited for a response from the pharmacist, I requested suggestions / experiences besides the aforementioned recommendations – which will be shared moving onwards.
Dr also told me to do hand and feet pumping. Feet pumping can be done while sitting and laying down. It gets the vessels to push more blood upwards.
She also explained this low BP contributes towards the intense coat hanger pain – upper neck and shoulder spasms.
In simple words for non medical people to understand:
Blood comes up from the bottom and is sent through the right side of the heart to become oxygenated in the lungs. After oxygenated, it’s pumped out from the left side to the reminder of the body.
Now, if a low blood volume comes up from the bottom and goes into the heart – resulting in a low amount being pumped out, the muscles, tissue, and organs are not being perfused properly and do not recieve the supply required to function well.
Therefore, a stronger supplement is required to also prevent it from dropping dangerously low post-exercise.
She also cautioned that cayenne pepper is used for hypertension not hypotension. So use it in moderation. Don’t go overboard if you have low BP.
“If I see your BP dropping low again like it was before we managed to raise it up this much, I’ll be the one who’ll have an angina attack this time round”
I laughed aloud but whole heartedly appreciated her sincere and concerned statement..
“honestly, this BP of yours is not even a joke”