Urgent question re POTS attack

[Conrad_hemsley]

Hi all,

I have POTS for almost 2 years now, have been bed bound for about a year. In the last 2 months things have been going significantly worse, very little ability to even sit upright, constant lightheadedness, often unable to have a pillow under my head.

Now, last night I woke up having a major attack, becoming super hot, extremely dizzy, shaking, heart rate going up to the 170s. Ended up calling the emergency number but they only did some tests. I have had this only once before. Since I usually get very bad relapses after adrenaline rushes, I am afraid how this is going to turn out, since I’m already practically unable to do anything besides going to the toilet, and now 6 hours after the attack im still completely wired and full of adrenaline. 

My question being: first of all, any experience with similar symptoms, and secondly, I usually don’t take beta blockers but have propranolol and Ivabradine in my house, does anyone take beta blockers on an as-needed basis? Any experiences would be much appreciated. Thanks!

[Pistol]

Dear @Conrad_hemsley I am so sorry that you are doing this poorly. First of all: do you see an autonomic specialist? I would call him as soon as possible and inform him how bad your symptoms are. Second: why are you hesitant to take your medications? I would take the propranolol or Ivabradine as directed by your doctor. It is important to take the medications exactly as prescribed. Dysautonomia is an imbalance and the goal of the medications is to establish balance - but you have to take them. If your doctor ordered to take them as needed then this certainly is a time when you need them. If your doctor ordered them daily then the fact that you do not take them may be a reason why you are this bad? When I was this bad I was always given IV fluids and that helps me greatly to stop the surges and to normalize HR and BP. Also make sure you increase your fluid intake and salt intake. But - again - please see your physician ASAP so you do not have to suffer like this any longer. Best of luck to you!!!!

[Conrad_hemsley]

Dear @Pistol, thanks so much for your quick reply. I am seeing a cardiologist who specialises in POTS and ME/CFS. He is one of the only people who deals with these conditions in my country (Netherlands). I did inform him this morning but he’s saying the reason I’m worsening is because I’m doing too much - but I’m not doing anything, it’s just that from the position where I’m in (being bedbound 24/7) even the small things are already giving me relapses: I am quite sure this relapse is because I had to do two 20-minute phone calls last week with my health insurer which is apparently already too taxing for me.

He did indeed prescribe me propranolol and ivabradine. I took the propranolol for a while last year but I got significantly worse from it, it made me very weak and worsened my orthostatic intolerance. Therefore me and my doctor agreed it would be better to stop taking it. He then prescribed me ivabradine, which I have been hesitant to take since I had such a bad experience with propranolol.

Another reason why I’ve been hesitant to take them is that there have been periods in which I really improved by consistently abstaining from stressors, eating healthy, resting excessively, etc. I talked to some people who recovered fully from POTS by doing these things and I have been confident that I could do it too. And it did go very well, up until about 2 months ago, when I had a crash that put me in this vicious circle that I’m still in. 

IV fluids (does that include IV saline?) is something I’d like to try but I have no idea how to arrange that. Did you get that at a hospital?

[Leann]

Dear Conrad_hemsley,

If your symptoms are worsened by beta blockers/propranolol, you may have POTS related to mast cell activation syndrome, which is known to worsen with the use of beta blockers.  I'm not an expert, but have recently been diagnosed with POTS several months ago after having very worrisome symptoms for about a year and a half.  I'm a physician myself and have devoted a lot of time and energy researching POTS, its various forms and by the time I saw the POTS expert in my area, seemed to know as much or more about the various forms of POTS.  She said she didn't 'believe' in the MCAS for of POTS, but it's been in the literature about POTS for some time.  There are various ways to test for MCAS, but one of the ways to prove someone has that form is that symptoms improve significantly with medications that stabilize mast cells, such as Benadryl/diphenhydramine and H2 blockers such as Ranitidine/zantac.  In the U.S., both these medications are available over the counter and very safe, so you might talk to your doctor about this or simply try 1 or both of these medications during an attack and if you improve significantly would point toward MCAS form of POTS.    Also, have. you had your ferritin level measured?  There certainly is a subset of patients who have relative iron deficiency (not necessarily with anemia) that is reflected with a low ferritin (<50), that significantly improve with IV iron when getting ferritin levels in the 75-100 range.  I have had a very low ferritin level ever since pregnancy, but have not been able to get it up with oral iron repletion.  There was a clinical trial enrolling for adolescent patients with POTS and treating them with IV iron but it closed early due to low recruitment.  Unfortunately, as I think it is a promising treatment for POTS, maybe for the majority of patients.   https://www.prohealth.com/library/iron-man-a-young-persons-pots-me-cfs-recovery-story-pt-i-6672

Leann

[StayAtHomeMom]

The best thing you can do is try the medications your doctor is prescribing. I hate taking my medication (just on principle) but my Beta Blocker is the one I can not live without. If I didn't take it everyday I doubt I would be able to get out of bed. If a medication doesn't work well there are many things that are similar that may make you feel better. Or the dose may need to be adjusted. Being bed bound is only going to make things worse in the long run. I hope your body settles down soon. I know it is rough when it decides it wants to go haywire. Good luck. 

[Outaker]

I suggest you ask your doctor for Labetalol or clonodine, to address the adrenaline surges.

[Outaker]

Ivabradkne and clonodine is the usual combo for hyper pots 

[Conrad_hemsley]

5 hours ago, Leann said:

Dear Conrad_hemsley,

If your symptoms are worsened by beta blockers/propranolol, you may have POTS related to mast cell activation syndrome, which is known to worsen with the use of beta blockers.  I'm not an expert, but have recently been diagnosed with POTS several months ago after having very worrisome symptoms for about a year and a half.  I'm a physician myself and have devoted a lot of time and energy researching POTS, its various forms and by the time I saw the POTS expert in my area, seemed to know as much or more about the various forms of POTS.  She said she didn't 'believe' in the MCAS for of POTS, but it's been in the literature about POTS for some time.  There are various ways to test for MCAS, but one of the ways to prove someone has that form is that symptoms improve significantly with medications that stabilize mast cells, such as Benadryl/diphenhydramine and H2 blockers such as Ranitidine/zantac.  In the U.S., both these medications are available over the counter and very safe, so you might talk to your doctor about this or simply try 1 or both of these medications during an attack and if you improve significantly would point toward MCAS form of POTS.    Also, have. you had your ferritin level measured?  There certainly is a subset of patients who have relative iron deficiency (not necessarily with anemia) that is reflected with a low ferritin (<50), that significantly improve with IV iron when getting ferritin levels in the 75-100 range.  I have had a very low ferritin level ever since pregnancy, but have not been able to get it up with oral iron repletion.  There was a clinical trial enrolling for adolescent patients with POTS and treating them with IV iron but it closed early due to low recruitment.  Unfortunately, as I think it is a promising treatment for POTS, maybe for the majority of patients. https://www.prohealth.com/library/iron-man-a-young-persons-pots-me-cfs-recovery-story-pt-i-6672

Leann

Thanks Leann, I have looked into MCAS previously l, but figured I didn’t have it because I don’t have diarrhea or constipation or other bowel issues. I do have continuous allergy issues leading to chronic sinusitis though, could that have anything to do with MCAS?

 

2 hours ago, StayAtHomeMom said:

The best thing you can do is try the medications your doctor is prescribing. I hate taking my medication (just on principle) but my Beta Blocker is the one I can not live without. If I didn't take it everyday I doubt I would be able to get out of bed. If a medication doesn't work well there are many things that are similar that may make you feel better. Or the dose may need to be adjusted. Being bed bound is only going to make things worse in the long run. I hope your body settles down soon. I know it is rough when it decides it wants to go haywire. Good luck. 

I agree, I’m leaning towards just going with what my doctor prescribes. He is currently thinking about either fludrocortisine, desmopressine or mestinon. Thanks for the kind words!

 

1 hour ago, Outaker said:

Ivabradkne and clonodine is the usual combo for hyper pots 

Thanks for your advice - I do not have the hyper type of POTS though. Will look into those a blockers in any case. Thanks!

[JimL]

Being bedridden is bad for anyone physically and emotionally. Maybe getting some sort of physical therapy would be good. 

[Conrad_hemsley]

Thanks @JimL, have indeed been trusting that for the last couple of weeks:)