I think I may have PoTs

[SmokinJoeFraz93]

I have noticed since becoming ill that when I get up from bed to use the toilet, my heart rate beats fast as well as my arms especially, feel derived from oxygen/blood for a few seconds, and then things start to calm down.

I’m 9-10 days in to a ketogenic diet, and I’ve noticed these symptoms have increased a lot. Going from a sitting position to standing, my heart rate is around 130bpm standing. I can also feel my heart beating inside my head.

I’ve never really considered PoTs before, but it’s strange how starting a diet can inflame these symptoms.

Do I need more symptoms than what I’m explaining to be diagnosed with this? And if it turns out I have PoTs, what’s the treatment for it?

Thanks.

 

[sb4]

There are various coping strategies (avoid heat, feet up, avoiding exercion, avoiding carbs), there are a few drugs that can help some, and depending on your symptoms, exercise can help (particularly legs).

I'd say you have it based on those symptoms but it is a lot like CFS where, at least in my case, treatment is non existant through the NHS.

Interestingly I noticed my POTS get worse when trying keto however the last time I tried it, it had no effect. Think it's important to not go too high fat and too low protein however last time I tried it I was in a better state of health than previous times.

Do you notice your symptoms getting worse after carbs?

 

[SmokinJoeFraz93]

Do you notice your symptoms getting worse after carbs?

I’ve always eaten carbs and always feel okay. I think I’m one of those who tolerates carbs well. My protein is around 120g per day and fat around 200g a day. I thought it was low electrolytes, but I’m taking in around 12g salt and 2.5 of potassium daily (estimate with the potassium).

 

[Crux]

I've not been diagnosed with POTS, but have had many episodes of orthostatic intolerance.

Choline and copper were good for the unsteady gait.

Low choline is associated with POTS.

Low copper is associated with ataxia and unsteady gait.

(btw, copper is effective against candida.)

 

[Hip]

I’ve never really considered PoTs before, but it’s strange how starting a diet can inflame these symptoms.

It's easy to perform an accurate home diagnosis of POTS, using the active standing test (aka "poor man's tilt table test"), which studies show is no less accurate than the tilt table test doctors use to diagnose POTS.

 

[Seven7]

I’ve always eaten carbs and always feel okay. I think I’m one of those who tolerates carbs well. My protein is around 120g per day and fat around 200g a day. I thought it was low electrolytes, but I’m taking in around 12g salt and 2.5 of potassium daily (estimate with the potassium).

Sounds like my experience too, by nature you ahve less water retention w Keto ( I stay in a trace of Keto state) so if you have mild POTs would make snese to get worst until your body gets a few months on it. I never stay long enough to know if it goes away w time ( I have the keto rash so when I get desperate I get myself out) but you can test your self for POTs w the DYI poors men tilt table test

 

[ryan31337]

In agreement with others, Keto initiation is a pretty sure-fire way to exacerbate POTS issue due to the inevitable dehydration and electrolyte loss. It will stabilise once adapted.

Re treatment for POTS: the core interventions are:

- Water and salt intake to increase blood volume
- Build leg/core muscles & utilise countermeasures to aid venous return
- Behavioral stuff like avoiding early morning activity, hot showers, long periods of standing etc.

If you're still noticing symptoms (diagnosis requires +30bpm from supine to standing, best done early morning pre-fluid intake), some of the prescription medicines include:

- Midodrine/Pyridostigmine to aid venous return
- Beta-blockers or Ivabradine to reduce HR
- Flourinef to increase blood volume

There are few cardiologists in the UK that accept it as a condition worthy of treatment. If you need help finding a good one I can recommend.

 

[Celandine]

@sb4 -- My experience is the opposite regarding treatment on the NHS. ME/CFS treatment was rubbish/nonexistent, but once PoTS was on the table I was able to get my GP to refer to one of the specialists on the PoTS UK site. I took HR measurements for my daughter over a couple weeks using a phone app and brought them to my GP. I had to virtually beg him to do the poor man's tilt table test in his office--he was going to just accept my word on the readings, but I wanted a witness! Once he observed the massive HR rise on standing, I showed him the NHS info on PoTS, which directs to the PoTS UK website list of doctors interested in PoTS and got him to refer to the closest one.

Unlike, ME/CFS, PoTS has actual medical treatment options. It was a total game changer for my daughter. It was also amazing to talk to a consultant in the NHS who understood the array of weird autonomic dysfunction symptoms, many of which are the same as ME symptoms. Daughter's now on Ivabradine and salt tablets +lots of water + horsechestnut tablets for vasoconstriction (that was my own addition, may try midodrine at some point) and her overall wellbeing has improved massively. It's pretty odd to say this, but the PoTS diagnosis is a real blessing.

I have no ideas on the keto side of things. Daughter and I are both whole food vegans. Well, mostly whole food. I will say that unlike many PoTS and ME patients, she has never had any digestive or abdominal issues. I'd like to believe this is down to the vegan diet, but more likely just good luck.

 

[Celandine]

This is the NHS website info on PoTS--Always best to refer to that when requesting stuff from GPs:
https://www.nhs.uk/conditions/postural-tachycardia-syndrome/

This is PoTS UK which has loads of good info:
http://www.potsuk.org

This is the Dysautonomia International, which has a forum and lots of info specifically around autonomic issues like PoTS:
https://www.dinet.org

 

[sb4]

Interesting @Celandine glad the dx has helped your daughter.

For me, when I was at my absolute worse in hospital, I figured out I had POTS and demonstrated this to the doctors who decided it wasn't that and indeed was all in my head. Anyway I got referred to the POTS specialists in my city through the GP, I fulfilled both criteria for POTS on my tilt table but the main pots doctor in sheffield said it was just anxiety.

I did get to trial Ivabridine in this time but unfortunately this didn't work for me. This is the only treatment I have received from POTS docs in 2.5yrs.

Later I would get referred to the london POTS docs who upon a more exhaustive tilt table would confirm I had pots of which they did not think was caused by anxiety but instead deconditioning (I massively disagree with this). In the year and a half I have been with the london team I have only seen a doctor once post dx. She didn't have anything for me.

I know there are various drug and further testing that I could have, and have indeed several brought and emailed research papers, brought in my own private testing results, and literally begged for certain tests and treatments. All resulted in nothing.

It seems they don't recognise how bad it is (or perhaps it is only worse when combined with CFS) so they think you are overeacting. It seems the NHS also ties their hands but I am sure there are ways to do these things if they wanted to. But for me it was, we tried you on ivabridine, that didn't work, now just live with it, despite several other treatment options and test being available.

Sorry for the rant. I do think it helps when claiming disability though.

 

[Celandine]

Wow @sb4. You've had a lot more contact with the autonomic doctors than we have. I'm really sorry you didn't get anything useful from them. I've heard various nighmarish things about the London autonomic units. Have heard they are so focused on the autonomic and totally ignore the ME and that they really put you through the ringer with testing. Daughter hasn't even had a tilt table or even a 24 hour holter monitor. Specialist listened to us and from his experience and HR and ECG results assumed she had PoTS and decided to medicate accordingly. I felt like more testing would have been good, but went along with the minimalist approach because daughter wasn't keen on tilt table.

I think my daughter got really lucky with the first med tried being quite effective. I will say that when she first started the Ivabradine it seemed to make things worse. Doc had her build up blood volume with fluids and salt for a week before going on it. We'd been doing the salt and water thing ourselves for a while, but not with any consistency. Doc said you have to be super consistent and also that it takes at least 7 days for the volume to start to increase. I didn't know that. So, after 7 days of water/salt she started the Ivabradine and, like I said, she started feeling worse. It brought the heart rate down somewhat, but it seemed the increased blood volume wasn't enough to keep the blood going to heart and head if the HR was lowered. Midodrine would be the next addition, but because her GP isn't comfortable prescribing specialist stuff and I had no idea when we'd see the specialist again (turns out never as he is currently "temporarily retired" aaarrghhhh!!!) I wanted to see if we could do something ourselves. We've tried Butcher's Broom in the past, which is supposed to be like herbal midodrine, but she didn't feel well on that. So I found this Swanson slow release Horsechestnut Extract standardised 22%aescin, which is also a vasoconstrictor. (Most reviews on Amazon are from hemmerhoid sufferers!) and we tried that. Seemed that was the missing piece of the puzzle and as soon as we added that in she started feeling better. This was in early November and month on month we're seeing improvement. She's also been taking liquorice, which acts as a kind of herbal fludrocortisone. My fingers are very crossed that the herbal aspects continue working.

Specialist did also say that once she could start the exercise this would build up the muscles, which would help things. I kind of ignored this. Yes, stronger leg muscles wouldn't hurt, but clearly this isn't the main issue.

 

[Celandine]

Just as medical precautions for anyone--daughter has lowish bp. Anyone with high or tendency for high bp should not take liquorice or horsechestnut.

 

[sb4]

@Celandine My experience with ivabridine was interesting. First few days felt better then rapidly declined. I tried various doses and the like but same thing everytime. Perhaps hydration thing could have been an issue however I am not the norm when it comes to this, I don't crave salt and don't really respond to salt or water loading.

I too have tried butchers broom and licorish root, both of which made my symptoms. What did help my POTS was mirtazapine (although it was a bumpy road), I speculate that this is due to increased adrenaline.

Yeah the testing at london was pretty brutal but I wasn't bothered as I wanted a good positive result, I also don't get post exertional malaise.

 

[Celandine]

@sb4 Sounds like you've got a very different set of things going on than my daughter has. Is the mirtazapine anything like amitriptyline? That sent my daughter into screaming head pain after trying.

 

[sb4]

@sb4 Sounds like you've got a very different set of things going on than my daughter has. Is the mirtazapine anything like amitriptyline? That sent my daughter into screaming head pain after trying.

Not sure about the amitriptyline but yeah I think I'm in a wierd subset with my symptoms, definitely think I'm more POTS/dysautonomia than CFS but even then I differ quite a bit from classic pots.

 

[taniaaust1]

@sb4 Sounds like you've got a very different set of things going on than my daughter has. Is the mirtazapine anything like amitriptyline? That sent my daughter into screaming head pain after trying.

Celandine. I think amitriptyline is one of the most dangerous drugs for those who have ME/CFS. I've wrote about that drug here before as it ruined my bowel. A ME/CFS specialist put me on it as a trial in low dose to take before bed to help sleep. I did not work at all on my insomina.. but as it can affect other systems, it basically paralysed my bowel and I then ended up having a bowel prolapse. (it only took a couple of weeks to do that)

It took 18mths or so to get my bowel functioning again, my prolapsed bowel due to this drugs side effect, I almost needed surgery due to it and to this day is still a bit of an issue. A couple of others here at PR with ME took it and ended up with their bladders PERMANENTLY PARALYSED and non functional.

All I can say is those who have ME or fit the canadian definitiion for CFS.. should stay away from this drug, it is not worth even trialing it as there seems to be huge safely issues in us with it (and a survey done on drugs being used in ME, showed it was very rare that it helped our patient group either in any way)

 

[taniaaust1]

I have noticed since becoming ill that when I get up from bed to use the toilet, my heart rate beats fast as well as my arms especially, feel derived from oxygen/blood for a few seconds, and then things start to calm down.

I’m 9-10 days in to a ketogenic diet, and I’ve noticed these symptoms have increased a lot. Going from a sitting position to standing, my heart rate is around 130bpm standing. I can also feel my heart beating inside my head.

I’ve never really considered PoTs before, but it’s strange how starting a diet can inflame these symptoms.

Do I need more symptoms than what I’m explaining to be diagnosed with this? And if it turns out I have PoTs, what’s the treatment for it?

Thanks.

A poor man's POT test done in any doctors office (make sure the doctor knows how this is properly done) or doing one at home yourself can show you if you have POTS or not. If your heat rate jumps from a stable laying rate to a standing still rate with an increase of I think its now 30 beats per minute within 10mins of standing up .. you have POTS. You need to be standing completely still and quiet for this test though I find taking ones own pulse during it fine. If there is any chance this test could make you pass out, be sure to have another with you when testing.

A heart rate alone of 130 when standing is not enough for a POTS diagnoses IF the heart rate was also high when laying.. then the diagnoses would just be tachycardia and may not necessarily be POTS. It needs an abnormal shift on postural change and standing.

You are likely to have POTS though (most with ME have also some kind of dysautonomia).. so get poor man's tested if you cant get a tilt table test done. (I've actually heard that occassionally the poor mans test can be better than a tilt table test).

 

[Celandine]

@taniaaust1 I had no idea the amitriptyline could have such far reaching consequences. What a nightmare. Daughter was given it for the same reason as you--to help sleep. Very low dose. Took it once and, like you, no help with sleep but so much pain the next day. Never tried it again. I'm very fast (too fast sometimes) with stopping any meds or supplements that have negative effects. Actually, the day after the amitriptyline was one of only two times I took daughter to A&E since she's had ME. I thought she'd had some kind of really bad reaction to it.