I know I can be terribly annoying talking about the various new things happening medically but then never going back and updating you all. Unfortunately I have the memory of a goldfish, my husband will attest to that. I forget things, I continually ask the same questions etc. It must drive him nuts some days but he patiently answers those repeated questions.
Last week as the episodes had come back with a bang I decided to bite the bullet and start using the octreotide again. I started off on a 0.2ml dose and that has gone really well. As there were no side effects I have increased this week back to 0.25ml, I had got up to 0.3ml before stopping it so I hope to slowly increase it back to that amount. So far so good, the weird thing is I can really feel it wear off with tachycardia coming out of nowhere once I get to the 90 minute mark after the injection. I see my consultant at the hospital in the next few weeks so I will update him them.
Fludrocortisone / Florinef:
I started taking fludrocortisone again back in February 2014 after the tilt table test sent my autonomic nervous system into free fall. Since then its been on and off until January this year when again I have taken another downturn health wise. I am currently taking two tablets a day which I find helps with the tachycardia and palpitations. It does zero for my blood pressure but if it stops the banging heart every time I move I am happy to take it. If I am having a very rough day I will increase to three or even four tablets.
Home Oxygen:
I still have my oxygen concentrator which is an enormous help to me….when I remember to use it. It is very reassuring to have the oxygen concentrator at home so that I don’t have to take a trip to hospital. There are several reasons why I use it, the first one is quite obvious I use it when I feel like I can’t breathe. This tends to happen if I am having tachycardia that wont settle even when resting. It is exhausting when your heart decides to run at a million miles an hour when you aren’t. It feels like you can’t catch your breath, so the oxygen just makes it a lot easier. On occasion it will slow my heart down as well so a double bonus. I also use it when I have a bad migraine, the oxygen seems to reduce the length of the attack and ease the severity of the pain. Since being on the fludrocortisone again I have had a lot more headaches an unfortunate side effect so I find I am using the oxygen more and more.
Back Pain:
Overall my back pain is 100 times better than it was back in August when I could barely get out of bed. I still have bad days and semi bad days usually when I overdo things however some days I can just wake up in agony. I am not brilliant at doing the Pilate’s I seem to have fallen out of the habit. I really need to get back on the case.
My back pain has also moved from being predominantly my lower back and now can be anywhere from the base of my skull down to my tail bone. For the moment I have stopped going to physio therapy as I really don’t believe that my back will get much better than it is now. I completed Pilate’s from the September to the December at a cost of £70 a month. We don’t really have the £70 a month to spend. If I can’t keep my back pain at the level it is now I will go back.
Bladder Problems:
My bladder has been doing much better since I have retrained it to wait for longer until I empty it. So far no infections which was my main concern as my going frequently was a habit I had got into due to recurrent infections.
I have not cut out caffeine, fizzy drink, artificial sweeteners or the devils juice. This was my decision and just because I have done it does not mean that this decision would be right for you should a medical professional advise you to do the same. I knew that my problems were not related to my consumption of these items but down to a neurological problem. The bladder nurse was trying to treat me for an over active bladder due to me urinating over 26 times in a day. What she couldn’t quite get her head around was that if you drink between 6-7 litres a day you are going to pee more than the national average.
I am being taught how to self catheterise at the end of this week…..I am so looking forward to it. At least this is happening in my home and not in a hospital ward. Knowing how to do this will be an enormous help as my bladder is still refusing to empty properly or completely stop working. I am hoping that by being able to empty my bladder in this way will mean I will not need the district nurses coming around and fitting a catheter with a bag in future. Time will tell. I am sure there will be a blog post following this hilarious fun-filled episode.
B12:
I was diagnosed with a vitamin B12 deficiency at the end of the summer. I had the standard 6 injections and then was supposed to be given the injections every 8-12 weeks. After 6 injections it was clear that I needed far more B12 than was being offered on the NHS (despite the NICE guidelines informing doctors of the correct practice). As soon as the B12 injections wore off my neurological symptoms came back. So since then I have been initially injecting every other day. I then spaced that out until every 3 days then every 4 days and now I am down to once a week. Any longer than that and the burning sensation in my left leg and foot comes back. I was obviously a lot more deficient than my B12 test accounted for.
Overall Health:
As I have a hospital appointment coming up in the next few weeks to see the consultant who looks after me for PoTs I have been thinking long and hard about how I am doing. I haven’t seen my Dr since April due to a massive balls up within the hospitals admin department. Hand on heart I can honestly say my health is slowly getting worse each year, which is upsetting and a little depressing. I don’t know where this decline will end and that is scary. No one seems to know or discuss it.
I am now starting to suffer from random drops in blood pressure when sitting. I am used to my blood pressure dropping like a stone on standing and have coping mechanisms in place for this. What alarms me about this new symptom is it is happening when I sitting with my legs raised. I will be reading or using my Chromebook and all of a sudden the screen will seem to scroll up or down. This is actually my eyes rolling in my head, within a few seconds my heart will feel funny. The only way I can describe it is that I get the sensation you have when you are falling in a dream, only I am awake. The attacks can last for just a few seconds or several minutes. I may get one in isolation or repeated attacks throughout the day. I know that whatever it is that is happening is causing my blood pressure to drop as I have been lucky enough to capture an episode on my BP monitor. This is just crazy and when I put some feelers out within the PoTs community only one person replied and said their son suffers from them.
I worry about these attacks as I have no warning that they will happen. For the moment I have placed myself on a driving ban until they have stopped for a few weeks. I feel like I am hanging onto my independence by a thread. Losing my driving licence – even though I only drive a few times a year would devastate me. Obviously having an accident and hurting other people would devastate me more. It is just that I feel that this illness has taken so much away from me I would hate to lose yet another thing.
Weight loss:
I am still sticking to my diet and I will admit it has been very hard at times. I have lost 21lbs since starting and I am just 3lbs away from what I weighed on my birthday in November which is what my first target was. I still have a long way to go, I am not even half way yet. I have found that reading my cards that I have made up with positive affirmations on them reminding me of the reasons why I want to lose weight etc have been really helpful especially on the days when I am finding it a hard slog.
One last quick update:
This one is regarding my mum. Those of you who are regular readers may remember I wrote about the length of the waiting list for my mums spinal surgery. She still hasn’t had the operation and has deteriorated further. She saw her surgeon last week after her gp wrote to the surgeon explaining how badly my mum was now doing. Her case has now been marked as urgent and she has completed all her pre-operative tests. She is now just waiting to hear when the operation will take place. Fingers crossed it takes place soon as she really needs it.
the myasthenia kid 
I am behind on reading my goodness is about all I can say!
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That’s all I manage lol!
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Ciao Rachel,
I’m so sorry to hear about you Mom’s difficulties. I haven’t seen her for some time, nor Lucy for that matter, It’s not an easy situation is it, I’m not surprised that Derriford is in such disarray. There seems to be more involvement in extending commercial interests, now Marks and Spencers right outside the door.
Additionally multi-million £ bonuses for the Senior Administration Wonks. The clinical staff are second to none, even with one hand tied behind their backs. It’s a sad commentary on Tory Britain and soon there’s every liklihood of a Tory victory or, worst perhaps, a Tory/UKIP coalition. Think about it! Tory back benchers may be loyal members of the Conservative party but first and foremost they’re about self interest and protecting their millions. The believe that we, The UK should leave Europe. A certain road to destruction. Our Universities and Commercial/Technical Base Economy are there because of support from Europe, millions upon millions of jobs are there because of Europe. The Tories and UKIP would take us out, they have some idea of returning to a Rose Tinted Spectacles view of the UK in the past, Georgian or pre-Bonaparte that never existed for the poor only for the rich landowners who owned everything including Parliament. The poor mattered not a jot because the workers, those who had jobs, only had them because of the landowners, many rich families who are in Parliament now. Those newly rich, relatively speaking are ideologically joined at the hip with the old time rich. They have little care, not to mention empathy for the poor and the disposessed then are the poor and the dispossed now. If they get their way then they will be in the same positions now and in the future, they are likely to continue in that vein. Politicians believe in nothing but staying in control to never be out of power, they hold the future of our lives in the palms of their hands. We, the Royal We, have no power to stop them. I live in Gary Streeter’s constituency. There’s little possibility that he will lose even if 50% of constituency were to vote for another party. UKIP, Greens [my own choice], Labour or LDs it won’t matter he will win. That will follow in many other constituencies. Unfortunately, the Mail and other Right Wing Media, even Murdoch’s Sky/Fox, have turned too many against the ideological Left. Mail Readers believe what is written in those pages, without exception, the so-called Grey Vote is Conservative, and UKIP to the core. I am with out doubt certain that the Election is already a Right Wing victory, even if UKIP share the vote. We, the “Little People” will very llittle say in what happens. I’m a fatalist, even a Realist. Too many of the Nation’s youth are apathetic, they have no faith in career politicians, considering them to be knaves and Liars to the core. They will not vote, if they did it might be different. My own son is now 37, he has believed the above since I was in the Army, a long time ago and he still believes it. He has never voted and will not. NO matter how I try to persuade him. He believes that he will do what he can for himself no matter what colour the Government.
The moral of he tale is that we with have a Tory Government or a Tory/UKIP Government and if it comes to pass we can bid farewell to our National Health Service “Free At The Point Of Delivery”. They have already put out suggestions that if those who can pay should pay a towards an upper tier of care that would give priority over the Proles. If, say, the Middle Classes decided to jump ship and pay this it would sound the “Death Knell” for the NHS and the poor would have no chance, even worse than now. What possibility do we have to change that, I really don’t have any faith in the Electoral System as is. Only when Politicians have one job and no other interests, beyond perhaps volunteering to keep themselves trained in previous expertise, such as a Doctor for instance, and their only pay will be as a Member of Parliament. That the House of Lords is disbanded completely so that slaps on the back will be a thing of the past, it’s lost as is our future. Without Reform.
I hope you don’t mind a little illegal Electioneering on the side Rach. Don’t forget lobbying by splinter groups is illegal.
So Take Me To Court, I care little for what those privileged arseholes [delete should you wish Rach] can do to me beyond what they’ve already done to me as a Disabled Person who, like all other Wheelchair users is invisible, and without the Rights of Equality with non-Disabled People. Many of whom have been further dispossessed purely because of their disability, thanks to the Moral Panic created against them by the Govt supported by the Right Wing Media. I think I’ve said enough to depress you and your other contributors. I don’t suppose many will agree too much with what I’ve said but I’m sure your Mom, Lucy and you will recognise that I’ve quite an experience within the NHS, Higher Education and Voluntary sector to know what I’m speaking about. Still it’s everybody’s right to disagree with me.
Take care of yourself Rach, best wishes and my hopes for a breakthrough soon Rach. Say hi to them.
David
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