Controlling BP with POTS

[gsclarke]

After almost a year of hospital trips including 4 inpatient stays, once again I am kicking myself for wasted time. Gall Bladder, thyroid, high BP, arrhythmia and tachycardia and no progress - they really don't think much of CFS or POTS here in Tenerife.

After a failed Catheter Ablation to try and correct arrhythmia and tachycardia, once again I am ditching any attempt to find a reason other than CFS and POTS.

My question is this: With BP that can range from upwards of 200/100 to 80/40, how much should I medicate to achieve a safe BP while avoiding the drops which basically compromise my ability to function.

The more medication I take the better for my highest figures but the lows can be worrying.

I have just halved my beta blocker as weeks of checking revealed the only change was to make me brain fogged to a point of total stupidity for very little result with my standing HR. I am currently taking an alpha blocker with it. The beta blocker tends to lower my HR, especially the resting HR whilst the alpha blocker controls the BP.

This morning, for example, my BP was 163/90 when I woke at 7am. After a walk and rest by 10am it was 120/70. By 10.30am, after eating it was 106/62. As I type, 1.30pm, it is 140/72 whilst resting. If I wash up it will rise above 160 again (unless I eat again which will likely drop it under 100).

You get the picture? If I increase the meds to lower my BP further I will have major problems every time I eat. It can also be a problem in that it drops when I rest after exertion (exertion is relative, eg 15 minutes in the kitchen).

All the stupidity over the last year stemmed from my BP being 160 at the GP.

Alongside this, the beta blockers largely slow my resting HR and this is good for minor activity but increased doses don't help the PVCs (Prmature Ventricular Contractions), if anything they worsen.

After the Catheter Ablation, it has been confirmed that my heart is in good shape and I am told by the cardiologist at the hospital that I should ignore the arrhythmia if I can and concentrate on the BP, which in turn may stop the arrhythmia.

I have gone back to trying to control the CFS and reduce the meds as of this week. I am back on D-Ribose etc. as I do think this may well help. I really don't want to be heavily dosed to control my BP as I will be pretty much unable to function at all. My brain fog has been horrendous of late and is just feeling better on less meds. I pace with a HR monitor and HRV control, my guidelines being calorie burn and step count.

Any thoughts and comments would be welcome.

PVCs, in case anyone is worrying, are harmless once checked, although they can be exhausting. You can have up to 20,000 a day without worrying although that would likely be a nightmare especially for us. I would have taken medication for them if it worked. Sadly everything went pear shaped switching to different meds in a effort to control something that I feel is better controlled by getting the CFS under control.

 

[Mary]

@gsclarke - wow, that is rather rough. I haven't gone through what you have, and am not very knowledgeable about POTS. The only thing I can suggest is to make sure your potassium levels are okay. Low potassium can contribute to high BP, arrhythmia, etc. I know your problem is your wildly fluctuating BP, but potassium might be of help.

People with ME/CFS tend to be low in intracellular potassium, despite normal blood work. You could try eating or drinking some high potassium foods (e..g, V8, tomato juice, coconut water, etc.) and see if it helps at all. You might find the first post on this thread interesting, where Richvank explains why people with ME/CFS have trouble maintaining adequate potassium levels: http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422

I've been taking a potassium supplement for 7 years now, since starting methylfolate.

 

[Sushi]

After the Catheter Ablation, it has been confirmed that my heart is in good shape and I am told by the cardiologist at the hospital that I should ignore the arrhythmia if I can and concentrate on the BP, which in turn may stop the arrhythmia.

What kind of arrhythmia do you have? I ask as someone who also has an arrhythmia and controls it with drugs. Ablation success is very dependent on the skill of the electrophysiologist, so results vary widely.

The only thing I can suggest is to make sure your potassium levels are okay. Low potassium can contribute to high BP, arrhythmia, etc.

I also find this true and so do other patients I know who have arrhythmias. The patients I know shoot for 4.5.

You could try eating or drinking some high potassium foods (e..g, V8, tomato juice, coconut water, etc.)

Agreed, except that low sodium V8 has much more potassium in it as the salt substitute they use is potassium. I keep a stash of small cans of low sodium V8 and drink one any time I am getting PACs.

 

[PennyIA]

I was supplementing with potassium (dx and monitored) and adding salt to my diet. It seemed to help a ton with POTs and cut back the arrhythmia (which the few doctors that mentioned a non-existent murmer but all dismissed, thanks to a low potassium test result I got some good treatment anyway).

 

[Mary]

Agreed, except that low sodium V8 has much more potassium in it as the salt substitute they use is potassium. I keep a stash of small cans of low sodium V8 and drink one any time I am getting PACs.

You're right, I generally get the low-sodium V8 which has 900 mg potassium per 8 ounces, as opposed to I think 500 mg per 8 ounces of regular V8.