Sunday, 2 October 2011

Challenges Ahead!!

Yikes!!! A whole month since my last blog! No apologies - that would be too much of a cliché, ha! Just an explanation ....! The gynaecology appointment a month ago really took it out of me, and between the affects of that, and the need to rest up because I had the cardiology appointment coming up too, I had little choice but to stay more or less offline. I've now had my first cardio appointment, which went ok, I think - but again, the after affects haven't been very nice. My eyes / light intolerance have stepped up a notch and I'm having to wear a mask for at least several hours a day, and the rest of the time I spend in dimmed lighting. My pain levels are pretty bad too, and now not only do my feet go grey and blue when I'm upright, but my legs go grey right up to half way up my thigh!! Kind of scary to be honest. I've really wanted to update you guys on how things are going, so I'm basically going to post the note I posted on Facebook after my appointment, with some additions I've been working on a little at a time ever since. Sorry, no pretty pictures today, and apologies in advance for all the long sentences! I'm just too tired to make it read more easily.

Ok, so - here's the story....

I saw the registrar (the consultant was really ill with a virus he didn't want to give me, so he just popped in to intro himself then left it to the reg to do the work, lol. I thought that was quite nice of him to be honest. Both the doctors and the nurse who sat in were really lovely, so that helped an awful lot with my nerves! I was so worried that my M.E. diagnosis would cause them to not hear anything I had to say without prejudice. I can't be sure, but I think maybe it was ok - the registrar said that he had a friend with M.E. so maybe that went in my favour!?!

Unfortunately the clinic didn't give me somewhere to lie down when I got there, and I was dumped in a busy waiting room with noise and lights and craziness. Not a good start. I was sitting for so long that by the time they took my blood pressure and pulse, they'd sort of plateaued out and weren't too bad (I don't know about others with Orthostatic Intolerance, but after a couple of hours my blood pressure seems to adapt, though the blood pooling is often still there) and there isn't time in one short appointment to keep me standing for longer than a couple of minutes to take readings. He seemed to take my own recordings at face value though. (he could easily have decided i was either mad or a faker, so...!)

The outcome of the appointment was that he's ordering a tilt table test (Which I'm honestly seriously scared of even though I know it has to be done. It's not just the physical strain of it, but also, I think it's going to be quite triggering being strapped to a table with little or no control - brings up some abuse issues. Blah!) and a 24 hour holter monitoring. Not sure when those will be done - but he's not left me with nothing in the meantime. He's prescribed insane amounts of sodium chloride (Sustained release tablets, 600mg, TWO tablets FOUR x a day - yikes! - Apart from anything else, how on earth will I remember that/fit it in??!!!?? Lol, I can barely remember to take meds 3 times a day, and that's with multiple alarms set on my phone, without which I'd be screwed!!) and said to continue drinking a minimum of 3L of water per day. It's a really high dose of salt that they've prescribed, but because I know it can be tough on your body, I decided to stagger it, starting on a lower dose and gradually increasing. I'm relieved they wanted to start some treatment straight away though, (and I know salt is basically the first line treatment in many clinics, so I was prepared for that) because knowing the NHS it may take a while to get the tilt table sorted. I suppose there's even a chance I could have improved a fair bit by the time I get it. I guess that would be a little annoying because if the tilt table test shows nothing interesting, can they even diagnose me??? But then, that would mean the treatment is working, and I guess that's the most important thing anyway, right? Hey - a girl can hope! ;)

The aftermath hasn't been pleasant, as I said ... and I think it's been worse than after my gynae appointment (not surprising considering a) I was looked after better at that clinic, put somewhere quiet and dark to lie down while I was waiting, and b) I had been still recovering from the first appointment!) but I do feel relieved to have finally seen a cardiologist - sheesh, it's taken long enough!!!!!!!! (I've only been having these symptoms in varying severities for 15 years HA!)

The next few months are going to continue to be challenging, to say the least. I have another gynae appointment this month. My Disability Living Allowance re-assessment forms have arrived, sigh, so I'm going to have to have appointments with an advocate to fill in the forms - and unfortunately the one I normally see has just gone onto maternity leave so I have to be re-referred and have a new advocate assigned! (Mind you, I'm lucky the department is there at all, because last time I saw my advocate, their budget had been cut significantly and she was concerned they couldn't last much longer!) I'm pretty scared about the assessment, because it's hard enough to get through it even without the major shake up going on with the benefits system right now - huge amounts of people are being denied benefits on reassessment, and if I get the wrong assessor, or medic, I could be seriously stuffed!! I have zero trust in the system now, let alone the people actually working within it!

Then we're still fighting social services to try to get direct payments (to pay for Anna to care for me) - they're on the verge of making the crappy decision that I don't need Anna in particular to care for me, and because she lives in the same house, they will only give me money to get an agency carer - which would cause me more harm than good! My GP isn't helping my cause - my social worker has repeatedly contacted the surgery asking for information from her on my condition and how it affects me, but she hasn't bothered to reply!! (And this on top of the fact that she still hasn't organised the vitamin d regime or any of the countless other outstanding things - and we can't even get through to the local patient advocacy office on the phone!) Then of course there'll be the tilt table test at some point, and a cardio appointment on the 20th December, which basically sucks because Christmas is going to be a write off for me after that. Last year I barely made it through a few hours with family and the after affects were awful! An appointment right before that .... I'm not even sure if I'll cope with dinner with my family.


I feel so overwhelmed by all this happening in such a short space of time, and I have no idea right now how I'm going to cope with it all. But really, I have no choice but to cope, so I'm just trying to take it literally one day at a time. I'll try to keep posting as and when I can - though that's going to be further complicated because I have to send my laptop back to the company I bought it from because it's all but died. I should be able to borrow my mum's sometimes but it's just that extra step that'll make it harder to get online. I just hope it can be sorted swiftly!!

I'd love it if any of you guys who haven't yet joined me on facebook would connect with me there too - that way I can keep in touch a little easier - just click the link on the right sidebar & send me a friend request with a note letting me know you came in through my blog. :)

I hope you're all doing ok - I've missed spending time with you all! xxx

Reader question about postural orthostatic tachycardia syndrome treatments

Reader Question for People With POTS :

Which treatments have worked for you,
and which haven't??

Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)



  1. First I am very happy you are back to blogging. If our health sucks, as often it does, I always feel a bit better after I blog. I know your story will definitely provide support and comfort to someone. I hate that you're having to undergo all of this, but I hope it generates some knowledge on how to best treat you! xoxo

  2. Aww thank you sweetie! I agree ... I always feel a little better after I've written a blog. It feels much the same to me as journalling, which I've done for many years, but with the added component of connecting with other people.

    I noticed you've merged some of your blogs - it'll be really interesting to see where that takes them! :)


    Little update : I just received my appointment for the tilt table test, and they've also added on an echocardiogram that I didn't know they were going to do. It's on the 14th Oct so really, really soon! I'm going to have to put off my next gynae appointment so I don't completely exhaust myself, but I decided it was better to keep the cardio appointment even so. At least this way I'll be getting it over and done with! We've even managed to get an ambulance transport booked this time. That'll be ..... interesting!

  3. Hi- I just found your blog today and as a POTSy can answer your reader question: beta blockers did not help me- they made me feel more calm (which was lovely, hadn't realised how stressed out my body was all the time simply due to physiological stress on my body- the beta blockers calmed that and I felt a huge difference) BUT they lowered my BP too much and made me feel drugged/sleepy constantly- when I already feel like that without meds it wasn't a good side effect! I tried fludrocortisone which helped but I came off that because it lowers immunity and as someone with an immune system that struggles as it is, that was no good. Calcium channel blockers didn't do much of anything, the best thing for me has been ivabradine. It stops me getting tachycardic (unless I exert myself too much, so it's not like it makes me like a normal person, but it helps immensly!) and for some reason it also helps with my dizziness and weakness- one time I forgot to take it and kept getting close to fainting, was white as a sheet, felt nauseous and like I was walking through treacle. So yeah, that one has been great for me.

    Is your tilt test tomorrow?? Best of luck! I was lucky enough to never have to have one, I was diagnosed simply from standing up for 2 minutes- my heart rate climbed continuously, I got dizzy and shaky, then was allowed to sit down as my heart had changed enough to mean I had POTS. I hope the test isn't too awful, both physically AND emotionally for you.

    Laura (UK Potsies). xx

  4. Hi Susanna, just wanted to let you know Dr. Hyde has said sometimes tilt table comes back normal even with patients he knows can't tolerate upright posture. (Info from here: Not sure why this happens but just on the off chance it would happen to you, want you to know you're not crazy.

    Anyway, I was on florinef and it was helpful but, like Laura, caused immune problems and after a few months I had my worst relapse ever from it. Took two years to recover and my immune system still isn't the same. You might want to look into licorice root. It has the same effects as florinef without the bad side effects.

    It's been studied extensively in Europe - more for treating gastritis though. It might be a good alternative for you but it also might not be understood/accepted by your doctor. You need to have your bp and potassium levels monitored if you're on it long term, so you do need to have your doc's support even if not understanding.

    Good luck and I hope all this testing will result in some helpful treatments for you!