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.

 

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.

Latest appointment with my Neurologist.

I had a very interesting appointment with my neurologist in London yesterday. I’ll start off by saying that I’m very grateful to have such a good neurologist who genuinely cares about helping me and takes time over my appointment. Before I met him I had had some very bad experiences with neurologists in both Dubai and London. When I met the one I have now I instantly breathed a sigh of relief that I had finally found someone who cared and understood. We have been working together for 6 years now, in some sense we haven’t made much progress but that’s not for lack of mine or his attempts, just my stupid headache. But unlike other neurologists he has not given up and he won’t give up, I will forever be grateful to have met him.

My appointment started off by seeing one of my neurologists headache nurses who does my reprogramming of my stimulator. I told her what had been going on, that I had an extra headache at the back of my head since surgery and that my normal headache was still worse, we went through numbers of the pain scale and where my pain usually sat during the day, which is from a level 8 to level 10. She then looked over my system and decided she didn’t want to do anything till she spoke to my neurologist. So I went back out to wait to see my Neuro.
He called me in and I told him how much I was struggling with everything that has been going on. He then said he thinks I am part of a very small percentage of people who’s brains cannot tolerate stimulation and the feeling of it. I guess I had already figured this out because of how much worse I am and how much the feeling of the stimulation makes the pain worse. But he said that they had put the latest stimulation tech in me which has the new capability of this burst system which is stimulation that goes on and off without you realising and you cannot feel the stimulation. So he thinks this might be better for me so wants to try it as soon as they can get the stimulation company rep to come to the hospital and sort it out for me hopefully in the next couple of weeks. In the meantime I’m to keep my stim off and he said hopefully my pain may calm down slightly.

He then asked me if my skin on my face was always red and blotchy I said well yeah it is quite a lot, my mum comments on it a lot. He rolled up my sleeve and took his blunted pen  and pressed it down in a zig zag motion down my wrist. Within about 2 seconds I had an insane reaction of severe redness. He said it’s called dermographia which is. skin condition. He then asked me to go through the Beighton scale, which is the test of Ehlers Danlos Syndrome, which I am already diagnosed with along with Potsural Orthostatic Tachycardia syndrome. To be diagnosed with EDS you have to score a minimum of 4-5/9 I score a 6. I think he wanted to go through it to show his colleague about it in real life as it’s not particularly common. He asked me some other questions to do with stomach issues, I said I have a temperamental stomach and I keep getting a rash in the crook of my right arm, I thought I was allergic to something like milk so cut it out and it hasn’t particularly helped so I don’t know whats wrong with me. He told me I have too much histamine in my body causing all these symptoms. He said people with EDS are more prone to histamine issues. He said that in a very small percentage of people with headaches who have histamine issues, that treating the issue in some cases made the headaches improve ever so slightly. He wants to put me on some histamine blockers and wants me to follow a restrictive diet. Having done some research and spoken to a couple other chronic illness friends, I actually think I might have Mast Cell Activation disorder which is causing the histamine issue, so that is something I might explore.

Maybe I should be happy he found something wrong with me,  and yes I’m glad my neurologist spotted this, but I actually feel really upset. I don’t feel joy to the fact that treating the histamine issue may improve my headache and yeah don’t get me wrong I wish that would be the case. But I feel upset that my body is not normal, that my body does not work the way it is meant to that I have yet another thing wrong with me. That I have to go back on medications after I was just about to be medication free for the first time in 7 year, as I’m withdrawing slowly from the last one. But now I have to go back on meds and follow a very restrictive diet which is probably going to make me miserable in itself. That being said I am going to try it all and see a dietician about it, but I feel very upset about it. And don’t get me started on the fact that my brain can’t tolerate stimulation because that’s just fucking brilliant. I feel like crying at the minute, why does my body not work properly.

If anyone reading this has similar issues with histamine, or Mast Cell Activation disorder please comment or email on iamtheneverendingheadache@gmail.com as I’d love to hear your experience.

4 months – still worse, no improvement.

It’s been nearly 4 months since I had surgery, I wasn’t expecting to be miraculously better however I was not expecting to be worse.

For the first 2 months I was over stimulated which was agony but that eventually got sorted out and the program changed to be much lower. The allodynia (nerve pain) that I had developed from the overstimulation went away thankfully, however underneath that nerve pain was a headache. My ‘normal’ headache has always been located at the front of my head; my forehead area and just reaching around to my temples, it’s never changed location and I never had pain at the back of my head. Since surgery I have been experiencing a lot of pain at the back of my head, the sides of my head and even behind my ears. It feels like my ‘normal’ headache has grown a friend or doubled in size.

The stimulator is on so low that I cannot feel it, because if I feel it my head actually hurts more. I was told that I needed to be able to feel the stimulation slightly in order to eventually reap any benefit. However feeling it causes me more pain so at the minute I’ve opted for having it on but on so low that I cannot feel it, so to not cause me any more pain than I’m already in.

Everyone I have spoken to says that this is not normal to happen after this surgery, so I don’t understand why I’m in so much pain?! I fought so hard to be able to get this surgery, I waited 4 years, went through a stressful complaints process, only to have the surgery make me worse, how does that work?! I feel defeated and I just don’t know what to do anymore. It’s been 4 months since surgery and the extra pain has not improved and I’m getting worried that I’m going to be stuck like this now. My neurologist wants to see me on the 15th Feb, so I’m hoping I might get some answers and some help then because I’m struggling right now.

Was it a big mistake?

I’ve realised recently how many unresolved feelings I have about my illness, and how none of them have really changed over the years. It doesn’t matter how much I try to escape my pain, how much mindfulness I do, how much I try to accept this condition or even all the many many treatments I’ve had, my never ending headache still remains as strong as ever.

I’m 2 and a half months post surgery, the tweaking they did a few weeks ago (when they finally realised I was being severely overstimulated and it had caused allodynia hence the severe nerve pain at the back of my head where I could feel the stimulation) has relieved the allodynia but I am still experiencing headache pain at the back of my head which is not normal for me it feels like my normal headache has doubled in size. I haven’t really told anyone about it as I don’t want to let everyone down with the fact I’m still in a lot of pain. At the minute I’m in Dubai with all my family spending Christmas and New Year here as my Dad lives here, right now I’m led in bed in agony. The pain is horrific and has been since last night.

I know I should be positive about the outcome of surgery and I know it’s still really early but I have a gut feeling that the surgery I had is not going to help me. Which leaves me to feel completely and utterly upset and helpless that my last ditch attempt at a life with lower pain is not going to be successful. That I’m going to have to live with extreme pain for the rest of my life that prevents me from doing anything worthwhile, from being independent, from having some sort of resemblance of a normal life.

A lot of my feelings have come bubbling to the surface recently, feelings I buried deep within quite some time ago. The anger I feel towards life, the depression that comes with chronic pain, the complete and utter loneliness that I experience and the distraught I feel towards the loss of my normal life nearly 7 years ago now.

I’m trying hard to keep everything together, I mean it’s Christmas for fucks sake, I should be happy, right?! But at the minute I’m a mess, it’s also quickly approaching the 14th January, a date that messes with my head, the date it all started 7 years ago. Yes you say it’s just a date it shouldn’t effect me, but I feel like I lost so much 7 years ago on that date and it sends me down a deep dark spiral every god damn year.

I wish one day I could write a post to tell you all that I’m miraculously better or even just that surgery has reduced my pain; I’d settle for that. But I don’t think that will ever be possible. I know my headache better than anyone and I feel like it’s here to stay. I feel like it doesn’t matter what I try my headache will always win and no one can do anything about that.

2 months of hell!

So it’s been 2 months since I had surgery and it’s been horrific. I’ve been sat at home in agony wishing I never had surgery in the first place. My normal headache has been way worse and it had been joined by a new friend; an extra headache at the back of my head. My head has also been very sensitive to touch, having my head against a pillow to sleep has been even more painful, thus my insomnia has made an reappearance. About 2 weeks ago now I decided to do a test and see what would happen if I turned the stimulator off for a bit, the result of this was that the extra headache went away, proving my theory that it is not surgical pain and actually the stimulation is causing an extra headache. I rang up my team in London and they said to turn the stimulator down really low and see if that made a difference, but there wasn’t any significant change after a few days so they decided they wanted to see me.

On Wednesday I trekked up to London and was first seen by my neurologists headache nurse who is a reprogramming wiz. She spent ages going through things with me and asking me about all the extra pain and looking at my stim system. She quickly came to the conclusion that my nerves had been severely overstimulated and I had developed allodynia in my head which is why it was painful to the touch. She said I seem to be very sensitive to the stimulation so we need to take things slow. She has changed the contact of the stimulation on my occipital nerves so I feel the stimulation in a different area of my head and the program is now one tenth of the strength it was before. As soon as she changed it I instantly felt some relief from all the extra pain, which felt bloody good. She is confident that this program will be a lot better for me and basically when my neurosurgeon reprogrammed it he only made it worse.

I then saw my neurologist for a few minutes to just catch up. I told him I had been wishing I never had the surgery and he said is is optimistic that this will be a lot better for me, and I still have 60/40 odds of some improvement of my normal condition. I mentioned that my psychologist wants to move me over to the ONS team psychologist when I get back from Christmas in Dubai in January. One of the nurses piped up saying he is fully booked till end of Feb, to which my neurologist insisted I be made a priority and have one soon after I get back. They rang me the next day after giving me an appointment 3 days after I get back from Dubai, so that’s good.

I left the appointment feeling so much better than I did when I went in, the extra headache has now been relieved and I never thought I would be so happy to have my normal headache back. Hopefully now that the programming is better the stim might be able to do the job it’s there for and help with my normal headache and not cause me any extra pain.