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.

 

 

Apologies for the disappearing act again.

Sorry I disappeared again, there was a reason, this time not entirely to do with health; well it was but it was because someone I know in real life was reading my blog which caused me to feel completely unable to write on here honestly expressing how I feel. I’m very messed up in that I cannot stand people who know me in real life knowing everything about my health and especially my feelings and I also have an inability to talk about them to people in my life also. So this blog has always remained very very private in my life so that I feel able to express how I feel which the only time that ever happens outside of me posting on here is when I’m with my psychologist or my doctors. I can’t write if people I know are going to be reading it, but hopefully it is sorted now and they have promised to stop reading, so I’m just desperately hoping they keep that promise, because I need this blog so much.

Will post an update soon.
Wishing you all a low pain day.

the never ending headache – Sian

Last weeks neuro appointment.

I wish I could tell you I had the guts to show my neurologist what I wrote in my last post, but unfortunately I chickened out and didn’t, which I’m annoyed about. I really want to send them what I wrote but I’m not sure I have the courage to do that either.

I felt physically sick with nerves before my appointment, though I do feel sick quite a lot now so maybe it was a combination of the nerves and the other problem that causes me to feel sick. My nerves were calmed by having a lovely chat with a woman in the waiting room which is like a room where people go in for day infusions, and she was getting one for her MS. She was really nice and talking to her helped me feel slightly more calm and was a bit of a distraction.
I saw my nurse first and there was so much I wanted to say but like always words failed me and the best I could come up with which kind of got straight to the point anyway was something along the lines of ‘I’m so fed up I want you to remove the stimulator.’ After a bit of a discussion with her I then waited till my neurologist could see me.
I saw my neurologist after a short while and to cut a long story short we decided to keep the stimulator turned off for 3 months, to get my pain levels back down to baseline before stimulator. At which point I will see him again where it will be discussed what to do next, maybe another small stimulation attempt which I’m really not keen on, or the only infusion I haven’t had. To be honest I just want removal, I want this nightmare over, and the last thing I want is for them to turn it back on and send me back into even more agony. But I don’t want them to think that I’m not trying, that this was all for nothing, that I’ve wasted their time and resources.
We then discussed my histamine intolerance issue and the medications he put me on the last time I saw him which really really helped for a couple of weeks, and then some of my symptoms started returning, and now I have hardly been able to eat in probably over 3 weeks now. He wants me to up some of my medications and see this Professor for this type of issue at a different hospital in London, so I’m going to be sorting that out as well. I’m really struggling with being unable to eat, and I feel incredibly unwell.

He asked me how I was doing, and I wish I had been able to go into some more detail than I did but I felt if I said more than I did I was going to have a massive breakdown and there were a lot of people in the room I really didn’t want everyone to see me like that. So I just said ‘no not good at all’. He asked me if I was still seeing my psych who is practically on my neuros headache team and I told him he had discharged me a few weeks ago because I reached the maximum amount of sessions he could offer me. My neuro said he would see if he could sort something out, I really hope he can. I wish I had been able to tell him how much I really am struggling, or even just have shown him my previous post, but me being the idiot I am was unable to do any of that, so he doesn’t really know how much I need some help. And as usual I hide everything with a smile, a laugh or some sarcastic comment so nobody knows just how badly I feel or how much pain I’m in.

 

What I wish I could tell my neurologist tomorrow…

I’m not good at expressing myself to people in person, I’m never able to say what I want to or need to. I’m much better at writing it down, what I want to say and how I feel. I’m seeing my neurologist tomorrow and this is what I wish I was able to tell him…

I don’t want you to think I haven’t given this enough of a chance or that I haven’t tried hard enough with it. I wasn’t expecting any sort of relief yet when I only had surgery 7 months ago, but I’m so much worse it’s unbearable and I know it should not be this way. I can feel that my pain/head/brain does not like what is happening to it when the stimulator is on, I can feel it and it’s even more agony than I’ve been use to for the past 7 years. And if that wasn’t bad enough an extra headache has been created at the back of my head, which was never there before and I don’t understand what has happened for it to be there, but it’s really very painful and I just wish it would go away. I wish I never had the surgery,  I wish I had listened to the people who said not to go through with it. However I’m the type of person who will try anything within reason if there is the slightest possibility it could result in some relief, and I know if I had not gone through with it I would always be wondering if this could have been my answer.
I don’t often complain to you Manjit, I don’t often complain to anyone, I usually hide my pain with a brave face, a fake smile, a laugh or a sarcastic comment, mainly because I don’t want anyone to see just how badly I feel and just how much pain I’m actually in. But this is me complaining, when the stimulator is on it causes me so much agony it’s becoming unbearable. And I’ll be completely honest, I don’t want you to turn it back on and reprogram me which will probably send me back into even more agony, I want you to keep it turned off and then swiftly arrange for removal. I’m in agony and I don’t know what more to ask for other than this and hope that I can return to what it was like before surgery, which was also agony but it wasn’t quite as bad as this. I know you’ve tried so hard to help me and I appreciate everything you have done to try and help me over the past 6 years I have known you, I appreciate it more than you know, you were the only neurologist I have ever seen that didn’t dismiss my pain, that listened to me, that cared enough to want to help and for that I will always be grateful. But I’m not sure I can keep going with this stimulator and how much extra pain it is causing me, I’m completely fed up and done with it and I honestly don’t believe that reprogramming it any different is going to change the extra pain it causes me when it’s on, I know my pain better than anyone, I know what it does not like and it does not like this, I wish so badly it did and I wish this could have been my answer for some relief, but I really don’t think it is.

I know everyone was worried about what would happen to me if surgery turned out not to help and where I would be mentally if that was the case. I wish I could tell you I was okay, or that I will be okay. But the truth is I’m not okay, I’m so very far from okay, I’m completely heartbroken and devastated about this and completely unsure of how I’m even going to be able to move forward from here, of how I’m going to cope with the rest of my life with this pain. I’m probably in one of the worst states I’ve been in and I’m probably beyond anyones help anymore. I’m 23 years old it’s been over 7 years since this started and I have no clue how on earth I’m going to survive the rest of my life with this pain, I don’t know how to deal with the fact I will probably never have any sort of relief, that all hope for that is gone. And I feel that if all I’m ever going to be is sick and in pain, then what really is the point anymore? 

I know I won’t be able to say this to you tomorrow, I’m not even sure I have the courage to show you this post, but maybe I will surprise myself.

 

Heartbroken.

I’ve been a bit quiet on here again recently, writers block would be the wrong word. It’s more like I’m actually really struggling and I haven’t been sure how to express it to anyone, even on here.

My pain levels are still worse since my stimulator was turned on a few weeks ago, my 2nd extra headache is still raging and I’ve resigned myself to the fact that I really don’t think my brain likes what is happening to it. I feel completely and utterly devastated and I really do not know what to do anymore. I was hesitant to call my neurologists team because I didn’t want them to think that I haven’t tried hard enough, that I’m just giving up. When really I’m in agony, I obviously wanted this to help more than anyone and I’m heartbroken that it has been a complete disaster and I’m worried I am now going to be stuck worse. I did however call my team and spoke to one of my nurses, telling her it was worse again and how I wished they would take the stimulator out. She asked if I had told my neuro that and I said not yet but I would be telling him when I see him in 2 weeks time. She said she would talk to him this week and said she would call me with what he says, so hopefully I will hear something tomorrow.

I’m really struggling with the failure of this treatment which was a last resort and the complete and utter heartbreak it is causing me. The overwhelming fear of spending the rest of my life in agony, the sadness I feel that I will never be able to move forward with my life, that all I will ever be is sick and in pain. And I honestly don’t know how to let myself feel the grief that I know is there.

I’m really at a loss of what to do and how I could even hope to move forward from here because I really don’t think it’s possible.

The art of looking OK.

I’ve been in pain for over 7 years, but if you didn’t already know you probably wouldn’t be able to tell. It’s taken me a long time to perfect the art of looking okay even when I’m in agony. But now the majority of the time I look relatively normal but nobody see’s what I look like when the pain is at it’s absolute worst, because I stay at home and in bed.

My pain levels are always on the high side, but I am able to mostly function a portion of the time. Over the years I’ve learnt to deal with the pain better, but I’ve also learnt to hide the look of pain in my face and hide how I feel from the world. When my headache first started I had no idea how to deal with it and I was unable to hide the pain and how depressed and angry I felt, and it drove everybody away other than my family and Jo. I’m not saying that nobody in my life these days knows about my headache; they all do and I’m completely fine with that and telling them updates on my stimulator and medical issues. But when I’m with people they have no clue the extent of how actually I feel like my head is about to explode or that someone has stabbed me multiple times in the head. I hide my depression and just how badly I feel about the fact that I’m going to be in pain for the rest of my life, how surgery was my last attempt at a life with less pain and it’s been a complete and utter disaster that has only made me worse. I hide just how completely devastated I feel about that right now, and I don’t necessarily want to talk about it with anyone because I honestly don’t know what to say and I don’t want to see the disappointment in everyone else’s eyes, because they were all rooting for this to be my answer too. My body has let me down, it has let everyone down.

Everything I do is clouded by the pain – I go to training (my best relief and coping mechanism) and hang out with some of the most amazing people afterwards having a laugh and a joke which is hilarious and always makes my day and slightly distracts me from my pain and the thoughts in my head. The pain is not great whilst I’m there but I get home only to be engulfed by agony. And how my life is right now is really all I can manage, I wish so badly I could manage more and it breaks my heart every day that this is all I will ever be and I’m really not sure I will ever come to terms with that.

I’m really struggling at the minute, I’ve got some aspects of my life that keep me going, my training and the people there, they don’t know it but they keep me alive and make me laugh and smile a million times more than I use to. But theres a hole in my heart that the pain has created and a deep rooted depression that I hide so well but will probably never recover from.