Post appointment cool down: POTS Party Part 2

29 Jun
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.

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!

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26 Responses to “Post appointment cool down: POTS Party Part 2”

  1. The Chronic Situation June 29, 2013 at 9:19 am #

    HI Jess
    I have been diagnosed with Orthostatic Intolerance, and have been taking fludrocortisone for a while. I think OI and POTS are basically the same thing, though I could be wrong, they certainly have the same symptoms. It’s my impression that pretty much everyone with ME/CFS has some form of this difficulty to stay upright.

    I had a tilt table test (http://en.wikipedia.org/wiki/Tilt_table_test) and I lasted about 4 minutes before passing out. I was also put on midodrine, but this did nothing for me.
    I think the fludro has helped a little, but i have been debating recently whether I should continue with it. Blog post on this very topic here…
    http://thedamnchronicsituation.blogspot.ie/2013/06/teeth-and-gums-and-going-backwards.html

    One thing I would say about the fludrocortisone is that I don’t think it increases anxiety or stress, the way that hydrocortisone might. One of the comments on your previous post expressed worries about steroids, and while I think you should be cautious, in my experience at least, the fludrocortisone does not increase stress hormones, and may even help with tachychardia as your heart is under less pressure.
    Good luck with it.

    • myjourneythrume June 29, 2013 at 9:46 am #

      Hi, thanks so much for your comment and blog post link. That was a really interesting read and so relevant to me. Thanks! Also thanks for the reassuring words on fludro, sounds like it could help me lots, and it’s good to know that you haven’t experienced worse tachycardia from taking it. My GP certainly seemed to think that at such a low dose I should be okay. The world of OI and POTS is pretty confusing, but I think you’re right, most people with ME/CFS have difficulty with standing and so it stands to reason that OI is part of/ symptom of ME/CFS.

  2. thehomeschoolingdoctor June 29, 2013 at 12:25 pm #

    As you know, I have been doing GAPS. Natasha Campbell, McBride, MD (actually a neurologist) makes a lot of claims for it. I don’t know what’s true or not. This is all “food voodoo” to me…But I have discovered that food makes a huge difference in me and some others I talk to. And what seems “healthy” for others, makes me feel bad–not “allergic”–but things like headache, swooshy head, poor concentration, tiredness and fatigue, the blues, dry mouth/eyes, hot flashes, constipation, bloating, and more–and these are to things like nuts/eggs/chicken/wheat (mind you, 3 of those are allowed on GAPS–it took some time to sort out reactions).

    I am not saying in any way, fashion or form that you should try GAPS. It’s just that you asked for anything anybody had heard of. I have read this from Dr. Campbell-McBride’s FAQ site for GAPS: http://www.gapsdiet.com/uploads/FAQS_Listing_1012.pdf

    Somebody’s question to her: “Can you comment on the use of the GAPS diet for P.O.T.S. (Postural Orthostatic Tachycardia Syndrome)?” Her answer: “Many GAPS people have POTS: you get lightheaded (almost fainting) when changing position from sitting or lying down to standing up. It is due to imbalance in the autonomic nervous system caused by toxins coming from the gut (in many people their abnormal gut flora produces too much histamine, for example). Work on your gut flora with the GAPS Protocol, and don’t forget to eat lots of animal fats, and this problem will go away.”

    One more thing, I don’t always like the way Dr. Campbell-McBride explains things, but it is very hard as she is talking to laymen/women. Sometimes she way oversimplifies things, which I think she did here in this explanation. For example, I try not to use the word “toxins” if I can (but she did elaborate on one specific toxin known to cause issues in people. there are more). And I think it’s more than just “gut flora,” although those are HUGE! And she implies that it will just go away; none of my problems have “just gone away”, but they are much, much better controlled and I know what causes them and I HOPE with her plan in another year or so it will all just go away. So, her “diet”, which really just is a diet which tries to remove known irritants and provide known huge nutrients, can help a myriad of issues. Or at least provide enough that the body can improve.

    And lastly, very few of us medical doctors feel that this kind of really “deep” nutrition really plays a role. I’m being won over to the dark side. I just hope to retain my sense of keeping true science behind me but yet being able to still accept things I don’t understand. There is another MD who I read with interest–she had CFS, too– maybe you’d enjoy it, I don’t know. All this stuff can be overwhelming. Anyhow, for what it’s worth, if nothing else than a good read. She’s a good writer. Diagnosis: Diet. Do read her story!

    http://diagnosisdiet.com/about-dr-ede/

    And lastly, never give up.

    • myjourneythrume June 29, 2013 at 7:34 pm #

      I have been trying to reply to your comment allllllll day but the internet here in rural England is apparently being even more rubbish than usual. Sooooo annoying!! I can not wait to get back to London where it actually works and not just at snail speed.
      Anyway, rant aside. Hopefully this time it will work.

      Thank you so much for your comment and the links. This is all really interesting and is ringing a lot of bells for me and I am seriously thinking I should investigate GAPS. What have I got to lose? Nothing, and I possibly have a whole lot to gain. I’m really encouraged by the fact you are a medically trained doctor and yet you believe in this ‘food voodoo’ (great phrase!), same as Dr Ede, her symptoms are so similar to mine. Toxins in my gut as the root of all my issues makes perfect sense since IBS type symptoms were the first signs of ‘ill health’ I had back in my early 20s. This followed 3 months of constant antibiotics for acute tonsilitis which did nothing for my gut flora I’m sure.

      I am willing to try pretty much anything to get well and would be glad of any improvement on my current situation, so am immensely grateful for you sharing all this with me. I really appreciate it and know you’re not forcing me into GAPS or anything, no worries there. I’m just very grateful for your support.

      I have just ordered the GAPS book by McBridge so I can learn more and decide with an informed mind whether I think GAPS is worth a shot (I’m pretty sure it will be). What else would you suggest I look at to get me started down the GAPS road?

      Thank you again, hope you’re having a great weekend.

      • Jackie June 29, 2013 at 9:32 pm #

        I just wanted to agree that Terri is wonderful. 🙂

      • myjourneythrume June 29, 2013 at 9:52 pm #

        Terri is most certainly wonderful and so are you. You’ve helped me feel far less lost this week with PoTs and OI, I’m so grateful for that. I love how blogging has put me in touch with people I’d never have connected with otherwise
        🙂 I will reply to your other comments in the morning, right now I’m shattered and must sleep (another rocking saturday night in ibs/me/cfs/pots land!) Jx

      • myjourneythrume June 29, 2013 at 9:55 pm #

        *Mcbride not Mcbridge!

      • thehomeschoolingdoctor June 30, 2013 at 3:16 am #

        Just lost my response, too! Oh, well! I will put together a list of items to read that helped me. It may take me a few days but I will do it. Will be in touch.

      • myjourneythrume June 30, 2013 at 6:47 am #

        Thank you, that would be really useful. No rush, if/when you have time. 🙂

  3. Jackie June 29, 2013 at 9:28 pm #

    So now that you’ve made me blush with all of your compliments, I have a favor to ask of you…

    Please get compression stockings? Pleassseeee! They’re no the most attractive things and take a bit of getting used to, but your feet won’t turn purple anymore! My favorite brand is Jobst. I know several POTSies who have fought off wearing them (including myself who was SURE they wouldn’t help) only to be amazed at how much better life is without their legs purple and full of blood that should be circulating around their body. I wear thigh high ones. I wouldn’t recommend the waist high because they can be very uncomfortable when sitting down and you and I do a lot of that… so I figure we might as well get something we will wear rather than something that may help a bit more, but won’t wear due to discomfort. I think we are better off with thigh highs then adding an abdominal binder if necessary (although I don’t use one). The skin colored ones are almost always unnatural looking with the compression level we need, but the black/gray/colored ones look just like tights!

    Moral counts for a lot when you’re sick all of the time! I notice I feel a lot better when my fiance is around because he makes me smile so much. I think you’ve made a great decision there.

    Also, I love your doctor. He sounds like he really listens to you and takes your concerns seriously. I hope he is the type who will learn about POTS and refer you to a specialist who deals with dyautonomia if that is needed.

    • Jackie June 29, 2013 at 9:31 pm #

      One more thing: When we eat, it requires quite a bit of blood to go to the stomach to assist in digesting. Eating small meals, especially for difficult to digest foods, is key to helping minimize dizziness after eating. I’m about 98% vegan, but if I do eat an animal product, I make sure to take enzymes to help my body break down the food more easily. We need all the blood circulating we can get. 🙂

      • myjourneythrume June 30, 2013 at 6:07 pm #

        What sort of enzymes? Do you follow GAPS? Terri suggested that can be very helpful for POTS. I often notice my heart racing after I’ve eaten, especially after meat. I eat a veggie diet with some fish and chicken, gluten free (but not grain free at the moment), dairy free and refined sugar free, I’m still figuring out what my other food intolerances are cos something is definitely still causing my gut problems, I’m going to look into GAPS. This is like joining up the dots and seeing the light for the first time…it’s all becoming much clearer thanks to all your helpful advice 🙂

      • Jackie June 30, 2013 at 10:17 pm #

        I don’t follow GAPS. I don’t eat soy, dairy, gluten, or any animal protein. I eat a small amount of grains, mostly in the form of quinoa and sometimes Ener-G Tapioca bread. My protein comes mostly from beans and a little bit from nuts and seeds. I only eat animals if I get a huge craving and I always regret it, but that’s just me. I’ve eaten meat twice this year. I regret it because eating a living thing kind of grosses me out, but also because it makes me dizzy… I am guessing because takes so much more energy to digest, I take Source Naturals brand Daily Essential Enzymes. It has the best combo of enzymes I have found. Everyone is different as to what will work best for them!

      • myjourneythrume July 1, 2013 at 6:31 pm #

        That’s what makes this all such a maze isn’t it? That it is all so individual, makes it very difficult to know what to try next! But thank you for your comments, that’s all really helpful. I know when I eat meat, especially red meat, my ME/CFS symptoms shoot up, I think you’re right it takes more energy to digest it and so the rest of my body suffers as a result and/or my digestive symptoms are then worse. I’m going to investigate digestive enzymes that sounds likes a great tip. Thanks!

      • Jackie July 3, 2013 at 4:28 am #

        Let me know how they work out for you. They’re a life saver when I eat too much! I always have a few stashed in my purse.

      • Jackie June 30, 2013 at 10:36 pm #

        I left out what I feel is the most important part of any diet! I only eat whole foods. If I treat myself to a pre-made food (bread), I make sure I recognize all of the ingredients on the label, that there aren’t a ridiculous number of ingredients, and there’s no crazy ingredients I can’t even pronounce.

      • myjourneythrume July 1, 2013 at 6:40 pm #

        whole foods and unprocessed foods are definitely the way forward. I feel way worse when I have something with crazy random ingredients in it, it’s just unfortunate some of those are quite tasty! 🙂

      • Jackie July 3, 2013 at 4:31 am #

        Agreed! My thing that I just cannot “get over” is low quality Chinese takeout. Most things I’ve come to not crave because of how they make me feel… but some things are just so ingrained as comfort foods!

    • myjourneythrume June 30, 2013 at 6:02 pm #

      I had been thinking I don’t need compression socks, it’s not that bad…that is until I showered this morning (I don’t know about you but showering, especially washing my hair, is a pretty high energy activity and one that I pace with rests and I don’t wash my hair half as much I used to, tho I refuse not to shower!), I wasn’t washing my hair so was probably on my feet for about 20 minutes max in total, in the shower, getting ready before and dressed after. I felt horrendous by the time I was dressed, I was so shakey and lightheaded and my heart was racing. I went downstairs to get a snack (thinking it was cos I was hungry, even tho I didn’t feel hungry) and Mum said to me ‘you look awful and your feet are purple, get your legs up’….So I guess I do need compression stockings after all. I’ve just looked on Amazon and they the sell Jobst brand here in the UK and I’m going to order some I promise. Do you have ones that cover your feet and legs or just your legs? Also what level of compression do you recommend? And are the thigh high ones the best ones or are knee highs okay? Sorry for all the questions….this is all very new to me. But the purple feet have scared me into action! Thinking about it, I often feel pretty bad after I’ve showered but I’ve always thought that was something to do with hunger/blood sugar. I’ve never noticed the colour of my feet post shower (pretty stupid I know), now I can see it’s do with the standing up…I’m learning something new about my health everyday at the moment! Thank you again for all your advice. It is invaluable. If you want to take this offline, you can email me at myjourneythrume@yahoo.com

      • Jackie June 30, 2013 at 10:22 pm #

        Definitely get thigh high with a foot part (toe or toeless) because with knee high, it’ll just pool in your upper leg. I wear 20-30 mmHg but many patients are recommended to wear 30-40.

        I can’t take a shower anymore so I feel your pain! I have to sit in the tub and stick my head under the faucet. Some people get shower chairs, but just sitting works for me. About once a month I try a shower and I always go into pre-syncope.

        Don’t feel stupid! There are so many things we just take for being normal because its all we know.

      • myjourneythrume July 1, 2013 at 6:37 pm #

        ‘there are so many things we just take for being normal because its all we know’ – SO SO TRUE, you can totally say that again. When you’ve had symptoms for so long, they are your normal and because we don’t always discuss things as much as we should we don’t know that others aren’t in the same boat and that in fact it’s not normal/healthy at all! I totally feel your pain about the shower. On my worst days I’m the same and I use the tub too, I physically don’t have the strength to stand and wash my body in the shower. Thank you for all your advice on the support stockings, I am going to order some thigh high ones right now…watch this space for a photo coming soon!!

      • Jackie July 3, 2013 at 4:30 am #

        Showering: I feel like showering without getting dizzy would be even more rewarding than a shower after a long camping trip. One of those moments where you vow “I will never take this for granted again!!”

      • myjourneythrume July 5, 2013 at 4:50 pm #

        Being chronically ill makes you appreciate all the small things doesn’t it? Things that before you just took for granted. Really changes your perspective.

  4. Lindsay July 1, 2013 at 12:38 am #

    i have been diagnosed with both ME/CFS and POTS. i’m sure one is causing the other, but i can’t tell which 🙂

    i absolutely think there is a correlation between the two – the list of symptoms is so similar! i hadn’t heard of GAPS, but am glad someone posted about it above – I’ll have to look into it!

    • myjourneythrume July 1, 2013 at 6:20 pm #

      It’s a bit chicken and egg isn’t it?! Who knows which is causing what I guess all that matters really is managing (curing?!) the symptoms. Thanks for reading and commenting. GAPS is my next project, I know very little about it at the moment.

Trackbacks/Pingbacks

  1. Lost luggage and lost health….body start behaving now….please? | my journey thru M.E. - July 8, 2013

    […] that the dizziness, tachycardia and standing intolerance  has gotten so much worse (why? see my previous POTS post). The severity of these symptoms is still new to me and I’m still adjusting to what this […]

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