ramakentesh

Interesting that a calcium channel blocker helps. Any initial increase in dizziness or fatigue? Thanks

Yes the adrenalin surges. Hadnt had them for a decade until this recent flare when they went bezerk. Four nights of 8 hours solid. Not the best time ive had. 

Beta blockers didnt really help. Valarian out of desperation and taurine maybe helped a little.

On 8/7/2020 at 1:46 AM, Patrick said:

I have a lot of the same symptoms you do.  Mainly brain fog/lightheadedness and I also have the visual problems.  A few years ago, I went to a neuro-ophthalmologist who diagnosed me with visual vertigo (also know as shopping cart syndrome).  Basically, it's a disconnect between the eyes and brain and causes dizziness/lightheadedness when in certain complex environments (such as the grocery store).   Unfortunately, there's no cure and the drug he prescribed to me didn't work (Diamox), so I have to live with it.

I also have spinal problems - cervical myelopathy that causes imbalance, unsteady gait, numbness, etc.  My spine surgeon tells me that my autonomic problems are not being caused by my spinal compression, but I'm not sure I necessarily believe that's correct as I've read a few places that cervical stenosis can cause autonomic issues.  According to my spinal surgeon, I need surgery, but I'm putting that off as long as possible.

So, like you, I've got different problems and different doctors telling me different things.  I don't have POTS, but do have issues with my heart rate going from bradycardia to tachycardia upon standing.  I have an abnormally low heart rate upon resting (45-50) which jumps into the low 100's upon standing - and then drops back down within a few minutes.  There are no autonomic specialists near me and the one I was going to travel to isn't see anyone during the pandemic, so no real answers yet.  My cardiologist is pretty worthless when it comes to these issues.

 

 

Sounds familiar 

When i first got sick anything that made me stress at all triggered insane hr increases

The science however on etiologies and subtype-specific pathophysiologies is still not settled.

These were catagories designed by Stewart and Medow to subtype based on cutaneous blood flow.

The low flow subtype were almost exclusively female, generally had low body mass index, low blood volume and resting vasoconstriction but felt profoundly worse when given IV Vitamin C to improve flow-mediated dilation. These were asdociated with excessive angiotensin II in serum which more recently appears tied in some to autoantibodies agonising Angiotensin ii receptor type 1 (AT1-r) - MAS aabs suppress renin aldosterone which is believed to partially explain the volume deficits.

High flow have excessive blood flow and microvascular filtration in hands and feet which were warm to touch.

Normal flow was the most common and pooled exclusively in the stomach venous circulation.

The resulys suggest that all three forms had pooling in one region.

On 11/14/2014 at 8:23 AM, stephsurf said:

Hello,

I just wanted to get some feedback regarding peoples experiences with beta blockers. Ever since a few weeks back I have started taking propranolol continuously after a severe pots/panic attack like episode and a visit to the ER. I have occasionally taken it prior to this off and on when I felt I needed it but often ended up stopping it because I didn't quite like how it made me feel - however on these occasions I only took it for a max of 3-4 days. For some reason a small amount does a lot to me as well so I ended up only taking 2.5-5mg 2-4 times a day.

After stopping it the time prior I noticed I had about 2 weeks of what felt like constant panic attack like episodes and since starting back on it again those are the only things that have stopped. I actually feel more anxious on them I'd say but It stops the physical effects so I don't have a full blown panic.

Anyway I've now been taking it for about 3 weeks at 5mg about twice to three times a day. I thought nothing of it at first because I'd had a migraine around the time I started taking it which made me feel rather horrible as they do and that lasted a few days. My migraine has since left but I still feel very strange. The only thing I'm taking is propranolol.

I am experiencing what I would call a strange brain fog where the best way I can describe it is as being dissociated from my surroundings which makes me feel so anxious. I also have been having weird visual disturbance which I at first put down to the migraine but that doesn't seem to be the case anymore and it's a fine mizzle like blurriness that I see in front of me. For a number of days now I've actually felt rather depressed, withdrawn and really slow which is not like me at all and I don't really like the feeling either. I also previously had trouble sleeping as I think any potsie person does but this is a completey different feeling waking as if I have had no sleep and regularly waking up/lots of dreams. Trying to do things the next day with an even more sleep deprived foggy incoherent brain is really impacting my ability to function/exercise and get my pots back in order.

I also have the cold extremities, occasionally get jaw pain, weird numbness feelings, tight neck but I know these can be quite common. I could deal with these without the mental issues.

So I guess my question is has anybody else found similar symptoms? I think I really need to taper off this one and try another to ease my mind that it's not me going crazy and it's the medicine making me feel loopy. I know propranolol readily enters the brain unlike some of the newer cardio selective types so can anyone shed some light on what has worked for them?

Would be so reassuring to hear similar stories!

Thanks in advance

A lot of what you ar describing im experiencing in my latest flare (never had such severe brain fog in 17 years)

Th

On 2/12/2018 at 9:24 AM, bombsh3ll said:

Beta blockers reduce cardiac output and cerebral blood flow. They may help some symptoms in some people, but in the main POTS involves a reduced stroke volume and cerebral blood flow so it makes no sense to compound that. They are popular simply because they make the numbers look better, but the fast heart rate in POTS isn't the cause of the problem, it is the body's attempt to compensate for whatever your underlying problem is eg hypovolaemia, pooling, impaired venous constriction etc. If we felt well we would neither know nor care what our heart rate was.

This is exactly it.

Did your heart rate decrease?

Who are you seeing now days? If u need to chat about it pop me a pm.

Thanks

On 4/15/2021 at 4:15 PM, bizbiz said:

Hi Rama,

Haven't experienced this in current (and worst ever!) flare, but did in first two flares. So strange.

Sorry you are having a bad flare. Im in the same boat sadly amd with new symptoms to keep me guessing haha

Lately my brain fog has been so bad amd combined with the pandemic ive developed kind of ocd symptoms and was contemplating a low dose SSRI just to calm down my stress levels and compulsions.

Old post but new symptom in new flare and im getting exactly this:

Three days during adrenalin surges as soon as id fall asleep id instantly fall into this hypnagogic state where an image or word would flash into my mind's eye amd jolt me awake. So utterly bizarre i was convinced i was having a seizure until a pots friend said they also experienced this.

Cooked tomatoes make my pots worse always

Fatigue is the most common reported symptom in POTS according to the recent Canadian Consensus Statement.

Million dollar question is how to treat it.

B12 is a good suggestion. Mestinon helps some mildly as does volume expansion.

Ive done ok with midodrine and on very bad days pseudoephedrine. A supplement called NAC can also be helpful.

Some friends are prescribed modafinil or stronger but these may augment tachycardia 

All POTS by definition is a hyperadrenergic state. 

The concept of hyper pots being a separate entity with unique etiologies is challenged by the fact that as many 'hyperadrenergic POTS' patients as neuropathic POTS patients have patchy small fiber neuropathy.

I have neuropathic pots with hyperadrenergic features such as orthostatic hypertension (which paradoxically improves when i take midodrine).

Hyperadrenergic POTS - according to Vanderbilt - is a description of clinical features and not a diagnosis

Pots seems to involve - in some cases - excessive venodilation with compensatory tachycardia although NET deficiency can also cause excessive tachycardia and blunted sympathetic vasoconstriction

Histamine is another option but its effrcts are mainly at the microvascular level.

Old school antihistamines do have affinity for mainly muscarinic receptors where they might decrease the effects of acetylcholinesterase inhibition to a degree.

Clonidine acts mainly on alpha 2a receptors in the brain to suppress sympathetic outflow.

Unless Latuda is an alpha 2 antagonist i doubt it would interact with clonidine.

Does clonidine help your situation in a setting where licorice also does? 

My pots has followed a relapsing remitting course since it started in 2003.

All POTS by definition is a hyperadrenergic state. 

Butchers broom Is a pretty mild pressor but it does have a mild diuretic effect. It also forces the release of norepinephrine via tyramine content which may benefit some but not others

Interestingly my BP is all over the place when symptomatic and unmedicated - usually on the higher side. Midodrine and phenylephrine actually lower my heart rate and orthostatic BP presumably by stabilising things. 

I found that modafinil stimulated beta receptors (enhanced tachycardia) without any improvement to energy levels or vasoconstriction. Ritalin and Concerta are far better tolerated and helpful medications in my opinion.

In some studies hyperadrenergic presentations and low flow states correlated with the lowest blood volume - meaning that in most cases low blood volume is a feature of more hyperadrenergic presentations. In my case Florinef lowered my standing BP and HR.

One thing to remember in POTS specifically is that 'blood pressure' measurements only measure arterial pressure. Usually when arterial pressure is elevated, so is elastic recoil in veins. True hypertension is associated with hyperdynamic circulations, increased cerebral blood perfusion, increased cardiac output and stroke volume, increased overall blood volume and kidney vasoconstriction. Most of the damage done by chronic hypertension is caused by it being continually increased - even lying down.

In POTS there is mostly reduced venous return, reduced stroke volume and abnormally/impaired cerebral blood flow and autoregulation - and the arterial pressure goes down when patients lie down. In other words there are none of the actual main risk factors of essential hypertension. Some may even have an arterial sympathetic overshoot to compensate for impaired cardiac refill and stroke volume.

Im not suggesting that walking around all day with arterial pressures of 170/100 is a healthy thing or not something to be concerned about, but arterial pressures in POTS themselves may not be showing people a true picture of the underlying hemodynamics.