Stimulator removal agreed!

I’m a very grateful to have a neurologist and his team who are incredibly supportive and who I genuinely believe care (as believe me not all the ones I’ve seen are like that in the slightest), they have tried very hard to help me since I started seeing my neuro back in 2011. Unfortunately all attempts have not worked out, my headache being unresponsive and resistant to all treatment; and as you know this latest one has caused me more pain (turns out my brain is weird but I think I already knew that anyway!). In April I wrote a post entitled ‘what I wish I could tell my neurologist tomorrow’, at the time when I saw him I wasn’t quite able to tell him much of what I wanted to and chickened out of showing him the post as well. However a week or so later I built up the courage to send it to him.
Last week I had a surprise appointment, it had been booked in ages ago and I had been aware of it however I thought it had been cancelled and was expecting to be seen in July instead. After ringing up to see about a July appointment they said to come to this one instead. I then ended up in my local hospital Monday-Tuesday but luckily managed to make my appointment on the Wednesday, before being admitted to a different hospital in London that afternoon under the neuro-gastroenterologist I’m seeing.

My appointment went well and I felt very supported by my neurologist and his team, we had a long discussion about a number of things. The main being my stimulator, my neuro said that if having my stimulator removed is what I want then that is more than okay and he will arrange it. We discussed some issues surrounding that but I still said that I would like it removed, so they should hopefully be placing me on the neurosurgeons waiting list and it will be a 2-3 month wait for surgery roughly. I asked whether removal would alleviate the extra headache in the back of my head or whether I am stuck with that now, he said that it should hopefully resolve with removal of the stimulator. We discussed some future treatments that are hopefully in the pipeline in a couple of years time, and my ongoing other health issues.

I left with a mixture of feelings – grateful that I had felt heard and supported by them which isn’t out of the norm. I also felt a mixture of happiness and relief but also heartbreak and depression. I feel happy and relieved that it won’t be long before I am hopefully rid of this stupid device inside my head, that has caused me so much pain and still continues to. But on the other hand I feel heartbroken and devastated it has come to this. This was meant to be my answer, my last resort, but it has failed and now I’m not sure what to do or how to move forward.

Have a lot going on at the minute health wise which is making my head spin a lot. But knowing that my stimulator will be removed in the near future, which may hopefully relieve the extra pain in the back of my head, is quite a relief and gives me one less thing to worry about.


Had a week in hospital, am very unwell.

Been a while since I wrote a proper post, so thought I’d do a bit of an update before I get back to trying to regularly post. I’ve had a difficult time recently with a number of health related issues; mental and physical.
I haven’t been in a very good place at all for a while because of the failure of my stimulator and it has been getting to me quite a lot.
I spoke on here before about the fact my neurologist thought I had a histamine intolerance, well GI and eating related symptoms started getting worse and worse. Since about the middle of March they have kept getting worse. Eating would cause me to feel full after one or two bites, along with intense abdominal pain and nausea which would persist long after I finished those two bites followed by other GI symptoms. I tried to power through and continue eating but it kept getting worse, and from mid April I survived on a couple of mouthfuls a day. It wasn’t that I didn’t want to eat, wasn’t hungry or that food didn’t look nice, believe me it does – I love food and love cooking. But it makes me so unwell and causes severe pain and it kept getting worse; eating became unbearable. I kept getting weaker and feeling more and more unwell, abdominal pain and nausea started to appear not only after eating, though if I tried to eat they would just become unbearable. Since end of March I’ve lost 13kg in weight. My POTS symptoms have also returned over the past couple of months as well and as you can imagine my headache is not too thrilled either!

I saw a neuro-gastroenterologist in London a couple of weeks ago, that my neuro recommended I see. He said that he thinks that Ehlers Danlos Syndrome which I suffer from (genetically faulty connective tissue) is effecting my gut and we would need to do some urgent tests to figure out exactly the problems it was causing. However I kept going downhill and 3 days after seeing him last Monday I ended up having to go to A&E at the advice of my GP surgery. I was on the verge of collapse and needed urgent IV fluids to treat severe dehydration; as it turns out I also had dangerously low blood sugar. They gave me fluids and glucose and kept me in as they were concerned, however the doctors at my local hospital where I was said they would be unable to help me as I was too complicated for them. After discharging myself for a number of reasons which I won’t go into now (maybe on another post) the neuro-gastroenterologist professor in London admitted me up there, to try and get me a back on my feet slightly and to do the tests.
(I did also see my neurologist last week as well as I had a previously scheduled appointment that I managed to still make before I got admitted at the hospital where the professor is, however I feel this needs it’s own post so that will come soon!) 

I was given IV fluids, magnesium and vitamins, and because I am now completely unable to eat normal food without the pain I’m already in becoming unbearable, they have put me on these nutritional drinks called Elemental 028; which is basically a pre digested formula. They are more tolerable than food but do still cause me some pain which I hope won’t get worse. I had the tests but so far they have not figured out what is wrong and the only thing that showed up was that my spleen was on the high size of normal and my white cell and platelet count on the low side of normal. I was discharged on Saturday but still no better and am pretty much bed bound at home. Standing and walking for even a very short period of time e.g. walking to the bathroom, makes me feel like I am going to collapse. I’ve got another test to have but on an outpatient basis however I don’t know when that is going to be. But for now it’s predominately bed rest and nutritional drinks which aren’t very pleasant and cause me some pain but are tolerable and keeping me going for the time being. But I am pretty unwell to be honest.

I do have a theory that I am exploring but we will see how that goes.



My immunology appointment.

I had an appointment on Monday with an immunologist near where I live, he was recommended on the Mast Cell Activation group on Facebook. He was quite nice and I liked the fact he took the time to explain the medicine behind the things he was saying, being a bit of a medical knowledge junkie, I appreciated that. And I appreciated the fact that he listened to what I was saying, a lot of doctors I’ve seen over the years haven’t really ‘heard’ me. I explained my history, the problem, my extra unexplained symptoms and the issue my neurologist thinks I have.

I asked him whether he thought I had a problem with histamine and or Mast Cells and he said at this stage it would be hard to say but he wanted to do some blood tests to check a number of things but mainly my Tryptase levels, he said that if this was elevated it would indicate that there probably is a problem with my Mast Cells. (I have read that this actually isn’t the most accurate test for Mast Cell Activation Disorder, however we will cross that bridge if they come back as normal.) He gave me a prescription for the meds my neurologist suggested to try me on, but changed the dosage of one to be slightly higher as he said the level my neuro wanted me on was too low to be therapeutic. He said that this is what he would initially prescribe someone anyway, and to try a course for 2 months and see if it made a difference to my symptoms and my headache. If my blood tests come back with elevated tryptase levels he said that would open up other treatment options and we would then discuss what to do next.

I started the course of three medications yesterday, one is an anti-histamine, and the two others are Mast Cell stabilisers. I’m not too thrilled to be back on medication, as I’m nearly done withdrawing from the only medication I was on to help me sleep, but it doesn’t do it’s job anymore so I wanted off of it. I was looking forward to being medication free for the first time in 7 years, but now I’m back on three different meds. The immunologist did say though that I hopefully shouldn’t see any side effects from these meds, so hopefully that will be the case. I hope these meds help my ongoing symptoms that have been progressively getting worse and if this is not the answer to them then I don’t know where to go next. And maybe by some miracle it may help my headache, though I’m not too optimistic about that.

Keep you posted.

Not long now…

In 17 days time I will be travelling to London with my family so that we can spend the night there before my surgery the following morning where I will become a human robot. Time has moved very fast and I can’t believe that it’s now less than 3 weeks before surgery, it’s both exciting and scary and I feel a whole host of emotions surrounding it. I’m not really scared for the actual surgery itself, more so the outcome; will the only treatment left to try be the one that actually helps? Sometimes it feels to me that it’s a huge long shot despite being 50/50 odds, but nothing else has helped and I have tried every treatment under the sun so will the only thing left be the answer I have been looking for? Maybe, maybe not. I hope it’s a good outcome, but if it’s not then I don’t know what I will do. I can’t work, the pain gets to bad, I can’t study because yet again the pain gets too bad, so what really can I do? The thought of surgery not helping is a very depressing thought and I’m trying not to think like that too much because I know if I get caught up in it it could drown me. That being said I’m trying not to think too much about if the outcome is good either, because I feel that if I plan for that the likelihood is that yet again I will be disappointed by another failed treatment. So therefore I’m trying not think at all, which believe me with my overactive anxious mind is very hard.

This Thursday I am getting my hair cut, and no not the usual wash and slight trim that I usually get. I’m getting my hair cut very very short. Because this is obviously a blog and you guys don’t know me and have never seen what I look like, I will give you a brief description, I have long shoulder length, brown, very curly hair which has to  be washed every morning and left to dry in order to look somewhat presentable to the outside world. Because for surgery they will shave some of the back of my head , and I also won’t be able to wash my hair for quite a while, you can probably start to imagine the state my lovely long curly hair will be in, one word; disgusting! So I have decided to be brave and get it cut short, so that it doesn’t matter how much they shave for surgery and it will also be much easier to manage post surgery. It is going to be a huge change and I am scared I will look like a boy, although my hairdresser has assured me I won’t. I think right now I’m probably more anxious about the hair cut rather than surgery itself. But you never know maybe it will actually look nice and I will like it! Keep you posted.

Wishing you a low pain day.
Sian AKA soon to be a human robot.

I’m having surgery!

So my posts are far from frequent and I apologise but sometimes I feel like I have said everything there is to say about having a constant headache and how it has continually destroyed my life over the past 7 years. There is no feeling I have not covered in my posts and sometimes I feel like it would just do more damage than good to myself by hashing them same feelings out over and over again. That being said I did want to update everyone that reads and finds my blog about what is going to be happening in two months time.

On the 29th of September I will  finally be undergoing Occipital Nerve Stimulation surgery (ONS). I’ve waited a long time for this surgery; over 3 and a half years to be exact. I’ve fought hard to get this surgery done and I’ve been through a lot of psych appointments to make sure that I am ready. Last week they finally gave me a date and I am thrilled to have one all be it very nervous now that it has suddenly become so real and soon.

My mind wonders to what happens after with each outcome of surgery. It’s only a 50/50 shot at helping and it’s not a cure. So I guess it’s only natural to worry about the outcomes. What happens if it helps? What would I do with my life if it worked to a degree that I could manage to be able to work or study, what do I want to do with my life? But, what if it doesn’t work? Will I be left in pieces or will I finally be able to fully accept my condition now that I have tried everything? Would I be able to move on emotionally from the pain that holds me down?

So as you can see everything in very uncertain, what is certain though is despite being nervous and scared and worried I will be having surgery on the 29th September. I hope for the best outcome possible.

I will let you know how I get on.
Wishing you a low pain day.

Sian AKA the never ending headache

My yearly appointment.

Today I traveled up to London from where I live to see my neurologist, it didn’t go well.

I got there on time sat down to fill in my forms and heard that the clinic was slightly delayed, which was no surprise as last year I was the 2nd appointment of the day and I still had to wait over 3 hours to be seen because my neurologist was late turning up to the hospital.
An hour and a half went by and then I was called in to see my neurologists nurse, who is very nice. She gave me a letter from the clinical director that was addressed to me regarding the situation with ONS surgery being on hold, and basically just stated that it was still on hold and they are not sure if or when the problem will be resolved. She went through the medications I’m on, which is now only medications to control my POTS. And then asked me about what my pain levels have been like, which has been awful recently. She said that they had nothing more to offer me medications or procedures wise because I have ran out of options. She said that the only thing left was ONS surgery which obviously can’t happen any time soon because of the issues with the NHS and them putting it on hold. But there were the more recent external simulators which have recently come on the market, like Cefaly and GammaCore, and that if I wanted to I could try them. She then said she would go and speak to my neuro in the other room and for me to go to the waiting room and wait.

45 minutes later she called me back, I was expecting her to take me to see my actual neurologist but she didn’t she sat me down in a room with her. I was a bit confused so I asked her if my neurologist was actually here and whether I was going to get to see him. She said that there was nothing he could do so she didn’t see the point in me seeing him and she could just deal with me. By now I was pissed off, I had been waiting a year for this appointment, traveled a fair distance to get to it and was in pain and I wasn’t even going to get to see my neurologist. She said I could see him if I wanted to but there wasn’t much point and it would be another 45 minute wait, so I said I would wait to see him, and off I went back to the waiting room annoyed.

Another 45 minutes later I get called back, this time to actually see my neurologist, finally. He went through what the nurse had said and we had a discussion about it, I agree that there isn’t much he can do but I should be entitled to see the guy I have an appointment with and not be fobbed off with his nurse. I also wanted to ask him a question, that I really wanted and needed to hear the answer to and only he could answer it for me. I asked him if I was going to be in pain for the rest of my life. He said that he wasn’t going to make any promises but it’s highly likely that I will be in pain for the rest of my life. I told him I was desperate, he said he knows and he knows that I needed relief yesterday/today/years ago and that I’ve been in pain a long time now, and he understands that I’m desperate. He is a really nice guy and I truly believe he wants to help me, though there isn’t anything more he can do for me at the minute.

Safe to say have a mixture of some lovely negative emotions about today. I feel defeated and helpless, and I also feel scared about how on earth I am meant to go on in pain for the rest of my life, and I really don’t know what to do, because there is nothing I or anyone else can do to help me. Not to mention I feel beyond miserable and depressed about today and my life. I told my mum when we got home about the question I asked and she cried when I told her what he said, I haven’t cried yet, but that’s nothing out of the ordinary because I hardly ever cry, will probably break down some when soon about it, but for the minute I’m just feeling desperately depressed and helpless. I was feeling bad before today and now I’m just feeling even worse about everything.

Hope everyone else had a better day than I did!

I can’t do this.

I can’t do this, I can’t do any of this, it’s too hard.

I spend my life fighting, fighting the pain every second of the day, fighting how it makes me feel, and I never win. Everything is just so overwhelming. I feel so overwhelmed by the pain and how bad I’m feeling at the moment, everything is just so hard and I can’t do any of this.

I have so much to do and I can’t do any of it, I can’t concentrate because of the pain, so I sit at my laptop unable to concentrate and I can’t remember anything, my mind goes blank and then I get really stressed and anxious. So I sit here in pain and feeling like a failure because I am unable to do anything. So I don’t know what to do at the minute, I don’t know how I can keep going in so much pain and not to mention how much work I have to do, of which I am unable to because of the pain being so bad for pretty much the last few months. I’ve had very few moderate pain days and just strings after strings of severe pain days and it’s all too much.

I’m off to London tomorrow morning to see my neurologist, though I know it’s not going to be a good appointment and is going to just make me feel worse by him reiterating that there is nothing he can do, which is what he said last year as well. And I highly doubt that has changed. Not looking forward to it one bit, being told by a leading neurologist in your condition, a top one in the country at one of the top neurology hospitals in the UK, is heart breaking. I feel so desperately helpless and there is nothing anyone can do to help me, which I know will be re confirmed tomorrow, probably after I’ve waited 3 hours past my appointment time to see my neurologist.