I am POTS but what’s ME?

I’m sitting at the computer typing this wearing sports compression leggings and a sports’ heart rate monitor, when the most strenuous activity of my day is likely to be a sitting shower (at which point the sports equipment will come off!).

Topics touched on in this post: POTS vs ME symptoms; heart rate monitoring and exercise; exercise for POTS; post-exertional malaise; adrenal fatigue and POTS; diet and nutrition.

Background: I’ve had ME 17 years but I’ve recently acquired an additional PoTS diagnosis effectively backdated 17 years. I’m trying to get to the bottom of which is which in terms of symptoms and management.

This is a post which is more about asking for tips from you than offering tips (although you may be able to infer some tips from what I’m already doing). Please comment on the end of this post, rather than Twitter or Facebook, and then other readers can see your tips too.

I’m feeling a little stuck and confused. My confusion stems partly from the blurred boundaries between POTS and ME/SEID (see Am I PoTS or is it Just ME for background on this). Since writing that post I have had a formal Tilt Table Test diagnosis of POTS, but confusingly the SEID renaming process now includes a Tilt Table Test as part of the diagnosis (not as part of a diagnosis of exclusion, so not saying that you have POTS instead of SEID/ME because your heart rate increased when tilted). This leaves me a little confused both in terms of illness identity and practical advice. Is PoTS just part of ME for a subgroup and therefore ME strategies apply?

Symptoms

Currently my symptoms are more obviously POTS than ME (if it is possible to separate out the two). My most stressful symptom is concrete legs which I seem to be getting more frequently again, despite being on beta blockers. This means that I can’t leave the house by myself and sometimes I get stuck within the house (halfway up the stairs is the worst). I even get this from sitting upright. My understanding is that this is caused by blood pooling in my lower legs meaning there isn’t enough blood flow to my thighs, I can still move my calves and can sometimes do a little shuffle. It definitely helps to know what causes this. Previously I was told it was ME fatigue related which didn’t really fit and led to unnecessary extra bed rest (more on that in a future post on symptom based pacing).

Standing up I’m getting the belt-tightening-around-my-chest sensation, which might be more worrying if I hadn’t recently had lots of cardio tests. I’m also getting more dizziness standing again, although strictly speaking this is maybe low blood pressure rather than tachycardia related. By the way, when is low blood pressure dangerous? The other day my home monitor gave readings around 84 over 49, with related symptoms. I spent the day in bed, drank loads and ate salty things. What would you do in this scenario?

I had stopped wearing my heart rate monitor because my readings had become boringly low with the beta blockers, and it is a little uncomfortable to wear, but I wore it again yesterday to check. Although I’m not getting the previous bizarrely high readings I do frequently go over 100bpm standing while on Bisoprolol to slow my heart rate (technically still POTS because resting is more than 30bpm lower).

The two conditions have such similar symptoms that if it wasn’t for my sometimes odd viral symptoms I would think that CFS/ME was a misdiagnosis (afterall I was diagnosed with a diagnosis of exclusion method and they didn’t test for POTS at the time).  I don’t really think it’s a misdiagnosis but part of me suspects that my non-POTS-ME may be relatively mild underneath all this POTS stuff and therefore I’m wondering if I should concentrate on POTS based advice.

Exercise and Heart Rate

Exercise is the main point of confusion. Although POTS is another condition where exercise makes you feel pants, it does seem to also be an important way to get better if done right. The crucial factors seems to be to start off lying down and strengthen calf muscles. I have got to the point that I can do this recumbent ME-specific yoga most days if I don’t have a shower:

Even before taking beta blockers I could do this keeping my heart rate under 85bpm (about the same bpm as writing this now). There seems to be growing advice to keep heart rate low in order to avoid ME relapse:

Watch from around 30 minutes in.

It makes a lot of sense to me that this heart rate issue is where POTS and ME create a downward spiral, with the tachycardia leading to ME crashes.

Looking at this from the other side of the coin though, at what point is heart rate low enough to not count as requiring exercise pacing? Yesterday I tried out 20seconds (really cautious!) of air cycling lying down and my heart rate was 70-80 during the activity (nowhere near my estimated Anaerobic Threshold of 110), but rose to 102 on standing. I don’t feel any extra post-exertional malaise today and if I had it would probably be from standing still for a few seconds rather than exercising… Does this mean I can potentially increase my lying down activity quite a bit timewise (no crude jokes please!) without expecting payback?

Also, does POTS cause progressive or sudden payback in the way that ME does? In other words, in POTS does exercise just make you feel crap at the time, or can it make you worse long-term? In ME this is really contentious because calling it wrong can leave you more limited, either from relapse after doing too much, or from the health repercussions of doing less than you potentially can. Also, can you make POTS worse by thinking and reading too much, or is it only the other way around, with POTS causing cognitive fatigue?

If you’ve got POTS and ME/CFS and have successfully increased activity I’m particularly interested to hear what you did and what you learnt along the way. I have previously got to around 95% recovered but I think that was more from luck than wisdom (or perhaps a spontaneous POTS remission?).

Adrenal Fatigue and POTS

Adrenal Fatigue isn’t really recognised by the medical establishment. You either have Addison’s Disease or you’re OK (incidentally I’ve done the Short Synacthen test because I had signs of Addison’s and don’t have it). It makes sense to me that there would be a spectrum rather than a specific cut off, but this is definitely something I view through Accepting Sceptic sunglasses as I suspect it may attract snake oil peddlers.

I’ve previously done saliva tests and had low DHEA. My cortisol results where more interesting though because the first sample of the day when I was in bed was ideal, showing my adrenal glands can make enough cortisol and I’m not generally over stressed, but I had low readings for the rest of the day (they adjust for cortisol circadian rhythm). At the time the interpretation was something vague about not responding well to the demands of the day, but now I wonder if it’s POTS and standing related. Does anyone know anything about a link between POTS and Adrenal Fatigue? A quick Google seems to indicate that Adrenal Fatigue causes POTS but my hunch would be the other way around.

Diet

I used to have a ME-specialist nutritionist who was very helpful, but I stopped having appointments, as it gets expensive for small tweaks once you’ve made the main dietary changes. Are there any UK POTS specialist nutritionists or naturopaths you would recommend who do phone appointments? 

Also, I’ve recently cut back on some supplements as I was worried about taking them for too long. It would probably make sense to increase them again and see if my pulse rate comes down. I’m doing the obvious of increasing salt although I’m not very good at being systematic about this. My ME nutritionist said something about being careful about having too much potassium (eg limit bananas and avocado). Has anyone else come across this? I think it’s to do with the balance of sodium and potassium.

I’ve been eating some Ella Woodward recipes recently and find them tastier than the ingredients suggest. Some people with POTS seem quite defensive about her saying that she was ‘cured’ by diet, but what I’ve heard her say is that the getting better bit was more down to other things, and her diet helps maintain better health. Also, she says alcohol and deviating from the diet causes symptoms to flare up (which isn’t compatible with claiming a ‘cure’). At first I thought it was just a healthy, cooking-from-scratch general diet but it often tastes quite salty so I think there may be reasons it specifically helps POTS. I don’t buy the vegan bit though and go through the book looking at how to add animal protein. Can you recommend specific recipes or blogs around eating for POTS?

Can you recommend supplements, food, herbs or essential oils which do any of the following:

• retain fluid

• retain salt/electrolytes 

• help vasoconstriction

• raise blood pressure

• lower pulse rate

I find it frustrating because quite a lot of “healthy” things do the opposite eg lower salt, lower blood pressure etc or have both positive and negative effects e.g. caffeine is a vasoconstrictor but raises pulse rate. I also think about ME related factors like effect on immune system. I’ve started a spreadsheet trying to record this type of information for common food and drink, but it’s going to take me a while to complete. Have you come across anything similar?

Plan of Action

My initial plan (to be amended with your tips) is:

1. Go back on previous supplement regime

2. Wear Heart rate monitor regularly again and obey the beep

3. Increase low bpm lying down exercise while avoiding PEM

4. Follow anti-exercise plan with medium bpm avoiding PEM

5. Find more POTS friendly recipes

6. Review how I’m doing (diary?)

7. Ask GP about increasing Bisoprolol

8. Ask for follow up appointment with Cardiologist

Thanks for your tips (add as a comment).