POTS + ADHD.

[ZealAndArdour]

Hi all,

I have just been diagnosed with ADHD and I’m also under Cardiology after developing what seems to be POTS post covid infection. I have my ambulatory cardiac monitor on as we speak, and I had an echo on Friday. Should see the cardiologist again soonish with regards whether it is or isn’t POTS and whether they found anything else of note on either of these investigations and he’s going to look to also medicate for the POTS as well.

The Psychiatrist who diagnosed the ADHD has said he would like clearance from the Cardiologist before he would be able to medicate the ADHD and intends to send me a list of drug names to put in front of the Cardiologist so I can seek his approval with what we’re okay to try.

I’m really just looking for anecdotal evidence from anyone who might have been diagnosed with both conditions and whether you were allowed to be medicated for ADHD with co-existing POTS.

I’m seeing both the psychiatrist and the cardiologist privately and self funding (rather than through insurance) and I suspect it’s going to cost me another chunk of money to send the Cardiologist off with a list of ADHD meds to look into and produce a letter I can pass back to the Psychiatrist, so if the chances are slim, I want to be able to manage my own expectations and also not go to this further significant expense if it’s likely to be an outright no.

If it helps I’m 35 and don’t really have any other significant PMH.

Bump.

@ZealAndArdour I have PoTS but not ADHD. I do know of a couple of teens who are diagnosed with both and it can be tricky to find the right combination of meds, as some ADHD meds can aggravate the PoTS. Conversely, research is also being done to see if certain ADHD meds can help with PoTS ‘brain fog’.

The ambulatory monitor won’t definitively tell them if you have PoTS, but will add to the info, re your baseline resting heart rate and variability. Ideally they should be doing an active stand test to diagnose. An increase of 30 bpm on standing, maintained for 10 minutes is diagnostic. A tilt table test used to be considered gold standard for diagnosis, but the latest guidance states a stand test is adequate.

It’s worth knowing that people with PoTS display similar patterns of inattention to those diagnosed with ADHD, as part of the cognitive issues which come from poor blood flow and stagnant hypoxia. So you need to untangle whether you have both or the ADHD is a manifestation of the PoTS.

There’s some info in this paper.

This article discusses research into whether ADHD meds might be useful for PoTS related cognitive issues.

This is a study which specifically found ADHD meds worsened symptom burden and heart rate in PoTS patients.

Study on misdiagnosis of ADHD in PoTS patients.

2018 study into cognitive and attention issues in PoTS.

In your position, particularly as you are self funding, I would probably try medicating/managing the PoTS first and see if that improves the attention issues.

Might be worth looking into EDS too? It’s often co-morbid with ADHD and POTS.

I have friends with both.

My own experience is that I had to have various tests done before they would prescribe me my adhd medication the second time round (and I'm still waiting for it) and they haven't done a tilt table test on me which they should have, I still pass out and have bad dizziness when moving about, particularly getting up/ out of bed, turning over.

The first time I was diagnosed with adhd they didn't run any tests on me before prescribing me medication.

The cardiologist should know what you can and can't take.

Thanks both!

The cardiologist already did the active stand test and my heart performed on queue and went up to 157 with only a negligible drop in blood pressure so I think he was already pretty sure about POTS based on that, but wanted to exclude post-covid myocarditis or any other structural abnormality before he sent me away with a POTS diagnosis as one of my siblings died in their sleep age 25 (which is a big cardiac red flag), my mum has WPW and my paternal grandfather died age 75 with heart failure caused by tricuspid valve regurgitation.

I’ve read about the brain fog/adhd thing. However my ADHD symptoms have been present since I was a child (evidenced repeatedly in school reports, but classic female presentation; bright and well liked by teachers so nobody raised the question) and my POTS sx have only been ongoing since Jan when I had Covid.

I have wondered about EDS, I am weirdly flexible but never had cause to look into it before developing this potential co-existing condition. I think I’d need to get referred to a regional POTS service for anyone to look into EDS though, which I’m not sure the cardiologist will be able to do privately. I’m hoping once we start meds he’ll see me back on the NHS as I’ll have bypassed the NHS bottleneck.

He’s suggested trying a betablocker first, but said I may not tolerate that well as it might causes fatigue (which is one of my main POTS symptoms) so if that doesn’t help me then we’ll do Ivabradine. Do you think I’m better to push for Ivabradine to begin with?

Weirdly, my POTS sx only occur after eating. It’s very predictable now, it initially started off quite sporadically, and all I realised at the time was that I felt like I’d been hit with a bus of fatigue and just wanted to lay down. It was only after it happened a few times that I realised my heart was going very fast so started to track it on my Apple Watch. Since then it’s been occurring with increasing frequency and lasting for much longer durations. It now happens with every proper meal that I eat, so I’m basically reduced to eating tiny portions in the hope it won’t trigger my symptoms, or just a series of tiny snacks (a babybel or a Pepperami for example) continually over the day. I’ve lost a lot of weight since it started.

This might be helpful
www.reddit.com/r/SIBO/comments/c7j6h6/sibo_pots_and_dysautonomias_a_new_gut_connection/

In case you can’t click through from Reddit, here’s a link to the article that thread is referencing
atrantil.com/blog/sibo-pots-and-dysautonomias/

Don't have an Adhd dx myself but do have pots that developed post covid.
While you wait for suitable medications are you doing the basics (3lnof fluid a day, lots of salt and salty snacks, electrolytes, medical grade compression tights)?
Pots U.K. website is very good

Large or carb based meals can trigger and worsen symptoms, as they cause abdominal blood pooling. I find the keto diet is best for managing my symptoms. It’s basically small, very low carb (under 20g net carbs per day) meals. Blood sugar control can also be affected in PoTS/Autonomic Dysfunction and the keto or very low carb diets help to to keep blood sugar levels stable.

Both my and my ds’ PoTs are believed to be EDS related (hEDS). I couldn’t even stand up on beta blockers. I’ve tried three different types, but couldn’t tolerate any of them, so am on Ivabradine. I’m not much of a fainter, probably because my PoTS was undiagnosed for so long that I learned coping strategies, as a necessity, through trial and error. Ds on the other hand was unable to stand (or even sit) at all without passing out at one point and he is on Ivabradine plus Midodrine. It took a while to get his dosage right, but once they did his faints massively reduced and are pretty rare now.

You could also look into Mast Cell Activation Syndrome - MCAS (not to be confused with MCAD, which is a different condition) as it’s another comorbid and can be another trigger for symptoms, which could be another reason for you becoming symptomatic after eating. Certain foods can trigger Mast Cell/Histamine responses and it’s worth keeping a food diary, then cross referencing with a list of high histamine foods to see if there’s any correlation, which would make MCAS more likely. Dr Tina Peers’ website is a good source of info re Long Covid and MCAS. Unfortunately, like PoTS and EDS, it’s not very well recognised or understood in the UK, so it is another case of doing your own research and finding out which doctors might be able to help. My dd has MCAS, but thankfully not PoTS and is very hypermobile, but not diagnosed hEDS, as she has always been super fit and has managed ok so far. Hormones are just starting to kick in though, so we are praying she won’t be affected.

Agree with @PermanentlyDizzy
MCAS underlies my POTS and when that is well controlled I'm much less symptomatic
A combination of 2 OTC antihistamines (10mg twice daily) plus a low histamine diet made a big difference for me.
I'm also hypermobile and doing suitable exercise helps control the pots - swimming, cycling etc.

Doing my absolute best to get 3L of fluid in a day, and I do tend to notice that the rate is much lower when I’m very well hydrated, although doesn’t prevent it totally. Also adding salt to what I can, but it’s difficult to add salt to little snacks short of actually sprinkling it on a babybel, etc. I like salt though so I do add it when I can.

Tried some old post op surgical stockings (knee high) that I had and they seemed to make a very slight difference but not a massive amount. I probably need to speak to my GP about getting properly fitted for some thigh high ones.

Will have a read into all this MCAS stuff. Thanks for the pointers!

Hi op. Don't have POTS but I do have ADHD, so apologies if none of this is useful because I'm not very familiar with POTS.

You might want to have a look at the adhd community on reddit if you haven't already? I did a quick search for the three terms and there was a lot of results.

First comment said Strattera was really bad and made everything much worse.

There seems to be general appreciation for Adderall helping a lot but unfortunately it's not available here unless you have a doc who can prescribe it off label, which will be expensive.

Ritalin seems to get good comments and that is available here.

Vyvanse (Elvanse in UK) is kinda interesting because lots saying it's a lifesaver and no negative effects on POTS. That's what I take myself but my heart rate is definitely up compared to what it is off-meds. No idea how much 'up' is concerning for your condition. I'm assuming that is what the psychiatrist needs cardiologists opinion about?

I checked my fitbit and my average resting hr has gone from 63-65 to 71-73, 78 when I'm not sleeping well (another side effect). Again, no idea if that's helpful or relevant

It could be that they all work differently for different people - I know that's definitely the case for adhd symptoms and side effects between two people with the same diagnosis. I have a friend happy on Adderall and another one who says it's evil and turned him into a zombie, but copes just fine with Vyvanse.

So I would definitely have a read around with the understanding that it varies so much just for the adhd side of it from person to person.

But it definitely seems like it is working for people so hopefully you can get something to work for you and the UK doctors are willing to try like the US ones. I think it's worth a shot at pursuing?

One more thing I will say is... if you're already struggling with keeping weight on I found medication has made this a daily battle. I have never been a big eater - I used to forget to eat which is probably down to the adhd 😂 - but I was just below the middle of healthy bmi when I went back on medication earlier this year, and now I'm fighting to keep in the green. I have no appetite at all, although I do feel hungry at times... it's a strange feeling. I'm combatting it by having as big a breakfast as possible, and then eating again at 10/11pm at night when I can manage it. But you might find you can tackle it with the little snacks during the day like you've been doing.

Just something to be aware of because I know they monitor this super closely as well as HR and BP in the early days while you go through titration.

Hopefully there was something useful in there and best of luck whatever happens.

Your GP might be knowledgable about POTS and compression stockings but many aren't, many cardiologists aren't either . Pots U.K. website has details of compression stockings and grades. Best are waist high down to ankle and cost around £40. Can be really helpful for some.

Just thought I’d update about my POTS situation (no further forward with ADHD meds).

I started Bisoprolol on Friday and oh my god the difference is amazing. I’m still having POTS episodes after eating, but my heart rate never goes above 90bpm and so I feel a lot less shit when they happen, and they’re over a lot quicker. Weirdly, I also think I feel a bit calmer and more peaceful in a way, which is strange as I never really noticed my heart rate having an effect on anything until I developed the POTS sx.

Cardiologist has said to try 2.5mg Bisop for a month, if I need to I can then increase to 5mg for a month, and if still not totally better with that, then I’ll have to back to him and we’ll look at Ivabradine or Midodrine. He wants me to put the ADHD meds process to one side for a month until we know where I’m at with the Bisop, but ultimately said he had no issues with me trying any of them, as it would just be a case of trial and error really.

I honestly could have cried on Friday evening when I went out for something to eat and wasn’t completely floored by fatigued and dizziness afterwards due to the rapid heart rate.

Did you end up taking your ADHD meds in the end?