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The way forward.

September 24, 2011

I had a bad bacterial infection a few weeks ago, and I have to say that it made a nice change to go to the doctors, receive a diagnosis and walk out with a packet of antibiotics that were designed and produced to cure the problem – all within the space of one appointment!

The only downside was that the antibiotics really flared up the POTS, my symptoms took a nose dive over the 7 day course of medication. The head was much worse, insane nausea, tiredness, sleepless nights, night sweats. The tablets did their job and within 3 days of completing the course, I was back to my ‘normal’ state of health.

Talking of medication, It took Prof Mathias team about a month to pen a letter to my GP. He phoned me to read out the contents…

“I’m afraid its not exactly what we were hoping for” was his opening statement, before continuing to sum up the contents of the letter. It clearly confirmed the POTS/EDS diagnosis also stating that every test they put me through made my POTS worse. The CT scan on the brain came back fine, and they also spoke about the seizures being related to the POTS.

“It says that they will see you in clinic to discuss medication. Do you have an appointment to go back?”

“Yep…. Its next year….”

We both fell silent.

“Right, well, thats err…” Clearly trying to remain diplomatic, but his frustration was fairly evident.

I had been to see him only a few days previous, and had vented my sheer lack of trust in London. I want to say that I feel let down by them, but they haven’t done anything to  actually earn my trust – in fact, since being ill, they have not done a single thing to help me or in fact their colleagues!

I had taken an article with me to the appointment and showed it to my GP, half expecting him to be offended that I was trying to show him what to do, but as ever, my aptly named “super GP” read the full article and then proceeded to explain all the medications and how they may be of help. (super GP is the name my friends with POTS have given him – a lot of them have GP’s that are unwilling to listen to them or help with something that they don’t understand, mine is the complete opposite – hence the nickname they’ve given him)

The Fludrocortisone is a great drug, warding off the night sweats, chronic earache and most importantly the seizures. The Beta blocker is also a miracle drug (after all, I go from bed ridden, barely being able to lift my head off the pillow, to someone that can stand and walk about!) The only unexplained issue is this constant head pressure and head ache which I have had non stop for the last year. (If you were to forcefully strain your jaw, by trying to close it without allowing your teeth to close, you’ll find a pressure that builds up in the sides of your face and up to your temples – this is a basic version of what my head feels like ALL of the time).

On discussing this with my GP, we thought it may have been caused by the beta blockers, so we tried a different heart drug called Ivabradine.

Well, 4 days later and I just about made it to my follow up appointment with my local consultant at Kings Lynn. I was in a bad way, barely able to stand, still with this constant head pressure. In short the Ivabradine clearly couldn’t control my heart rate – it would go through the roof as soon as I stood up. Even at rest the palpitations (the force at which the heart beats) were so intense I couldn’t sleep, I even rocked backwards and forwards just sitting there – exhausting to say the least!

Needless to say I am back on the beta blocker and much better for it, but at least now I know its not the beta blocker causing the head pressure.

Ive had a lot to think about since coming out of London a month ago, I got incredibly low on several occasions, but I gave myself a stern talking to and sort of realized that I was waiting for an answer that isnt going to come, there is no ‘cure’ for this and the combination of drugs I’m taking at the moment work well (despite the head pressure).

This was only later backed up by the comments of my consultant at Kings Lynn, who in a round about way basically said: It’s not life threatening and as difficult as it may be, I’ve just got to get on with it, this may be the best its going to get for me, so get on with life. (obviously he worded it much nicer than that, but I knew what he meant).

I will endeavor to ignore this head pressure and head ache and get on with life. When I see Prof Mathias’ team next year, I shall ask them again what they think it might be.

I started my stomach medication this week, unfortunately as well as Domperidone (the drug to speed up the digestive transit), I also have 10 days of antibiotics to clear up the bacteria in the stomach, so I’m once again enjoying a POTS flare up, earache, insomnia, nausea, the list goes on. Once they’re out of the way I hope to be able to notice whether the Domperidone is actually working (although it sounds more like the arch rival of Zoro, than it does a form of medication!)

Positivity – Ive been going for short walks each day, and even been out in the car (as a passenger) a few times. The beginning of November will be the big test, as we attempt the long journey to the Lake District, but before then I hope to make it down to Essex to see the grandparents. (all of which sounds impossibly exhausting if I’m honest!)

I certainly cant ‘forget’ the head pressure and head ache, but I’m doing my best to ‘ignore’ it!

  1. My heart goes out to you. I have EDS as does my daughter. Once a year she goes to London, once a year they write a letter saying how she has deteriorated. Another appointment a year later. Prof G from a couple of quick tests is saying she does not have POTS. Yet she has every single symptom. I am past understanding this now. I am not sure its right but I gave up seeing anyone in London a long time ago. But I am 47 and perhaps this was a mistake. I wanted my daughter to have referrals to Professor M but it has not happened. Just a referral for a three week stay in Stanmore yet I know she has not the confidence to go. It doesn’t matter because I doubt that the local PCT will fund it anyhow. They didn’t fund Bath Pain Management all those years ago and now at 21 I have a daughter wracked with pain with a lot of letters on her file saying that she needs more help. Oh yes and a once a year visit to the big shots in London. We manage well, she is beautiful but inside our house is pain and dizziness and spots before our eyes. Fortunately we don’t have epilepsy but my husband and son do so it is something I do understand. How odd you mention earache constant, I only said to my daughter this evening that I have had earache for 35 years. Last year I had an incision made in my eardrum and a little mini hoover scooped up stuff, but not the stuff that is normal in these circumstances as it was dry. Still the earache persists. I understand. Sometimes with EDS III I think there are layers of pain, like lasagne, there is pain that is persistent that is always there predictable, then there is sudden pain that comes from nowwhere that is almost like a relief as it distracts from the constant pain, then there is the unbelievable unexpected pain alongside symptoms that sometimes make me wonder whether this is more than EDS III. I read in blogs all over the world, people who have a never ending quest for answers to it all. I can’t give you answers. I won’t pity you. I understand what you say. The frustration, the anger, the coping because you have no choice. I wonder whether you like my daughter and I try to imagine what one day, just one day would be like without an EDS III symptom, no pain, just an everyday day like other people have? I can’t change anything for you I am sorry. Keep blogging, it does help others with the condition. You write so eloquently. EDS III is such a cruel condition. Those of us with it can only try our hardest to support each other. You are right, for all that ‘stuff’ for which there are no answers we do our best to ‘ignore’ it. And wait for an appointment in a years time.Have they requested an mri to check for chiari at all for you I ask myself, it seems over here in the UK its ignored somewhat. Actually I forgot to say this year has been so very bad for my daughter that a locum GP asked she be seen in London sooner. That was six weeks ago and still the letter regarding the consultation has not arrived. But no matter like you we will continue to cope as best we can putting on our best EDS smiles. I hope today was a good day and if not that a moment of that day there was happiness because it seems the burden we have to bear with EDS teaches us to find smiles in small things. Much of what I have written is me trying to say, I empathise and understand and I am so sorry that you are having such a torrid time. I am on the top of my pain medication which has the unfortunate side effect of making me unable to sleep so despite being terribly tired I am here writing ‘stuff’ a tiny tiny bit of which I hope helps. A bit of me feels I have said too much but something in your post just rang so true. So many of us are told, there is no cure, learn to live with it. We don’t ask for miracles do we but because its such a rare condition it seems there isn’t the understanding that there is for example if one said one had MS. We do have to get very very strong inside to keep on ‘trying’ but oh wouldn’t it be nice just for a day that EDS III would go away. Take care of yourself, and a very very gentle hug. From one EDSer to another.

    • Thank you for taking the time to write such a comforting comment! I particularly like your explainaition on differentiating between consistent pain and surprise/irregular pain. I guess in a way the consistent pain is something I am trying to take as normal, which does help me to ignore it a bit better. I know how frustrating awaiting London appointments can be, especially when your local team of Doctors are urgently seeking referrals, so I hope that your daughter gets seen soon. Wishing you all the very best, Liam.

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