Post appointment cool down: POTS Party Part 2

I’m so dizzy my head is spinning…like a whirlwind it never ends…I’m so DIZZY…love that song and so appropriate. Image credit: Morgue Files User seeman.

Last post I shared some news from my latest appointment with my ME/CFS specialist. In short, thanks to my low blood pressure and racing heart on standing he suspects I may have POTS. From the comments I received on that post, it is relatively common for people with ME/CFS to also suffer from POTS or at least some form of othostatic intolerance (an intolerance to standing up….yes I can see the funny side of that too, my body doesn’t like standing up, great….but the dizziness is far from fun).

So what is POTS? What are the symptoms? What causes it? How do you treat it?

These are all very good questions.

And to be honest they are questions that I am still somewhat floundering around with trying to understand what the hell POTS actually is and why it has suddenly (potentially) joined my little party of medical acronyms! IBS…ME/CFS…potentially POTS…enough already!

Have a read of this article from patient.co.uk  or this article if you want to know more about what POTS is.  Both are highly informative but be warned these are both quite medical heavy articles, lots of jargon if you know what I mean.

A site that has helped lift the cloud of confusion for me is a blog I’ve been reading and following for a while. Jackie over at Lethargic Smiles suffers from POTS. Her doctors thought she had ME/CFS for a while prior to a doctor finally noticing her increased heart rate. I’ve always enjoyed reading her blog, but have turned to it in with renewed interest since my specialist appointment. Jackie gives a wonderfully clear explanation of POTS on her POTS 101 page and a comprehensive list of POTS symptoms too. If you want to know more about this condition in layman language I recommend you hop on over to Lethargic Smiles. I know I shouldn’t recommend you leave my site (please come back!) but I don’t see the point of using my precious little energy to write out what POTS is when Jackie has done it so beautifully 🙂

What I will say is this. POTS stands for Postural Orthostatic Tachycardia Syndrome which (very simply) means the body does not react as it is should when we stand up. In a POTS patient on the transition to standing upright from a lying or seated position, the heart rate increases and blood pressure can drop (causing the dizziness) and blood pools in your lower limbs. In short the autonomic nervous system is malfunctioning which causes a whole array of symptoms.

POTS can develop following an acute virus, especially during the course of a chronic illness and when the body has become de-conditioned (e.g. as a result of chronic illness). POTS does seem to fit my situation given:

• I’ve suffered from a chronic illness, namely ME/CFS, knowingly for the last 2 and a half years, and without a formal diagnosis for many years more prior to then; and
• I had a horrible flu virus in April; and
• the dizziness and racing heart (tachycardia) have been much worse since then; and
• POTS symptoms include headaches, anxiety, sweating, shakiness, neck/shoulder pain, bowel problems, poor concentration, palpitations and dizziness, all of which I suffer from; and
• I suffer with what I will describe as lower limb myalgia – my calfs and ankles in particular often feel very heavy and achy, as if there is something tight wrapped around them squeezing them tighter and tighter. This has become worse in recent weeks. And finally,
• POTS can cause purple discoloured feet and lower legs. I do suffer from that sometimes but never thought anything of it, it’s normal for your feet to turn blue/purple sometimes isn’t it?! Erm, perhaps not…

At this stage my having POTS is only suspected, though seemingly highly likely. I don’t think it is being suggested that the diagnosis is POTS instead of ME/CFS. I think it is POTS in addition to and as a result of ME/CFS, but that remains to be seen for sure. I know POTS is often misdiagnosed as ME/CFS. For now all that is clear is that I have relatively low blood pressure (115 over 80) that falls sharply on standing up (to systolic 80). My specialist has diagnosed this as orthostatic intolerance for now, subject to POTS tests including heart rate tachycardia monitoring.

It seems like POTS may be another piece to the jigsaw of getting me well. Though that said, POTS like ME/CFS, is a chronic illness and does not yet have a known cure, but there are ways of managing it to improve your level of functioning and quality of life. The POTS path at least gives something else for me and my (numerous) doctors to get our teeth into. It gives another angle, another possible symptom management option which gives me a renewed surge of hope that there is away out of the ME/CFS maze for me. If not an actual get out of jail free card, it at least offers hope of some relief from new symptom management.

POTS aside, onto headaches

POTS wasn’t the only thing discussed with my specialist in my appointment last week. We also covered my frequent headaches in some detail. After he had prodded and pressed my head, neck and back in numerous places (erm…ouch) the conclusion on this was that my specialist suspects my headaches and upper body myalgia may be as a result of contracted muscles and trigger points in my neck and shoulders. So he wants me to have some physio which should relax the muscles and triggers and reduce the level of pressure and tension that keeps giving me headaches. The more headaches you have the lower your migraine tolerance threshold becomes which is why I suffer from severe migraine headaches much more now than I used to. Fingers crossed the physio does the trick, he mentioned botox injections into the trigger points as a second option…

I also discussed my plan to live back with Mr B in our flat rather than staying up at my parents. He said he thought this was a good idea and would help my morale but that I would need to be very careful so as not to wipe myself; so lots and lots of pacing.

So all in all a very productive appointment. It was (this perhaps shows how dire my situation has been at times) nice to come away with a possible new cause of my symptoms and physical treatment and tests that we can try.

Next appointment with my specialist is booked for September 20th, providing plenty of opportunity for my specialist to travel before then so he’ll lots of stories to share with me 😉

Do you have POTS and/or ME/CFS? Has a doctor ever thought POTS may be causing the ME/CFS, or vice versa? If you have any POTS and ME/CFS related advice let me know. 

Do you suffer from frequent headaches? How do you cope? Lets all share in each others’ experiences, it can only help!

Have you read my previous post, POTS joins the party Part 1? If you enjoyed this post, part 1 is definitely worth a read!