Tag Archive | neurology

I get knocked down, I get up again …

Nothing’s going to keep me down. Certainly not a rush job to get my final assignment in, an intensive thesis proofreading period followed by an all-consuming revision period. Oh, wait, maybe that will get me down permanently!! But have no fear I hope to drag myself out of the pit of exhaustion soon.

 

Today and yesterday have certainly helped buck up my spirits. Yesterday I had my review with the neurologist. She is a lovely lady. She gave me a lot of confidence for the future. Over the last month the severity of my headaches has been increasing. I’ve been gradually getting more and more concerned that the beta-blockers were not working to suppress them. My neurologist was unsurprised and immediately prescribed a new drug – Gabapentin – which is an all around pain reliever. She really inspired me to feel confident that there are other options and that we are only just beginning the process. There is no reason why we won’t eventually have the headaches completely under control.

 

Today I then headed off for my penultimate cognitive behaviour therapy session. We discussed my plan for the future. First we reviewed what I learnt from my sessions and then discussed how I can apply those skills in the future. The sessions have been a major help to me. I think I’ve now got a handle i) on saying ‘no’ when I want to, ii) on my anxiety towards certain stressful events such as travelling through an airport, iii) handling my need to always be on the go rather than resting. However there are still some areas that need a lot more work such as my anxiety about relapsing. But overall these sessions have helped my to move from ‘moderate’ to ‘severely’ anxious down to the top end of ‘normally’ anxious.

 

In my plans for the next month I am gearing up towards National Novel Writing Month. I started back into reading some of my half finished writing advice books as a way to get my mind in the right framework. I’m getting there but am still feeling pretty sluggish from my recent activities. Hopefully I’ll be up to speed and ready to tackle the novel once more come November 1st.

 

Hours Sleep Today so far : – 9 hours in 1 sessions 🙂
Headache intensity / pain level : 5 😦
Nausea level : 0 😀
Joint / muscle pain : 3 😐
Fatigue : 6.5 😦
Brain Fog : 5.5 😦

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Relax don’t do it …

Hours Sleep in 24 hours :
Today so far : – 13 hours in 2 sessions 😦
Headache intensity / pain level : 1 😀
Nausea level : 0 😀
Joint / muscle pain : 0 😀
Fatigue : 7 😦
Brain Fog : 7 😦

Well I have seen the new face of the NHS. I went to my CBT appointment today in the new hospital in Chelmsford – Broomsfield, It’s quite amazing. It has a triple height glazed foyer with the obligatory modern art with a curving corridor to keep visual crowding down. Then they are the high tech self-check-in touch screens, the standing screens in steps down the corridor with information and calls for the pharmacy numbers. There is a WHSmith, a Costa Coffee and a M&S. It really was a world away from the volunteer run tiny shop at Colchester Main Hospital in the lobby area. It also didn’t smell like a hospital. To be fair I was in the lobby and therapies section and the building where they hold these sessions in Colchester doesn’t smell either. The neurology department in the main Colchester hospital had that awful hospital stench. I don’t how the staff can bear it.

 

Anyway my CBT session went well. We basically reviewed my activity diaries which would have been easier if I had actually remembered to print them off and take them with me. I could remember a fair bit so we discussed that. We talked about my recent jitteryness – it was worst yesterday than ever. I ended up eating a casserole dish of carrot sticks, cherry tomatoes and green pepper in order to keep chewing but not overdo the calories. The urge to be chewing something was just overwhelming all day. Anyway we discussed that and then we moved on to my anxiety levels. Now prior to the ME Clinic assessment appointment experience I would have said I was not a anxious person. I do have anxiety issues occasionally but I thought that was a relatively small issue. After almost shouting at my father in a simple conversation about the upcoming appointment, getting very shirty with him and then almost hyperventilating when the conversation continued I began to realise maybe the issue is more serious than I thought.

 

It frequently happens that different things I’ve been mulling over for a while come together at one time. After talking to my best friend V about relaxation techniques it triggered me to reassess my own relaxation level. Now I’ve noticed before that it takes me a long time generally at least 20 minutes in my acupuncture sessions to get to being what I think it totally relaxed. I generally relax in stages i.e. I think that I’ve totally relaxed and then 5 minutes later actually relax my muscles further. I then think I’m totally relaxed but actually in another 5 minutes find I’m relaxing my muscles even further. What I find concerning / interesting is that at each stage I think I’m totally relaxed when clearly I’m not and worse at that last level I can’t be sure I am actually totally relaxed – maybe there is another level to go that I never reach ?

 

I’ve also become aware that I’m carrying a lot more tension in my body that I thought. I thought I was vegging out in front of the TV totally relaxed but I’ve become aware that people with ME are often physically tense. So when I started to really pay attention I realised that I’m actually quite tense all the time. So I’ve been given abdominal breathing exercises to do – at least 3 times a day. I have to monitor my relaxation levels for the next 3 weeks and then we’ll see how I’ve done. All of this is working towards trying to deal with the serious anxiety attacks that happen when big events are upcoming like airport travel.

Headaches, headaches wherefore art thou?

Hours Sleep in 24 hours :
Today so far : – 10 hours in 2 sessions 😦
Headache intensity / pain level : 2 😀
Nausea level : 0 😀
Joint / muscle pain : 0 😀
Fatigue : 6 😦
Brain Fog : 8 😦

I’m still alive – I survived the neurology appointment. It was actually an extremely stress free experience. Dad washed my hair for me, we left on time and I listened to my music on the way there. There was a parking spot right outside the door, no cue for reception, went straight through to the nurse for a weigh in, had about 5 minute wait for doctor who was running on time (!) and then only a short walk to see her. The actual consultation was very reassuring. It seems that yes I do have a problem with chronic migraines (!) – I hadn’t realised that the low lying headaches with clusters of high pain migraines was actually a recognised pattern. I didn’t get to discuss my symptoms as much as I’d have liked but I think she just asked about the key points she was interested in to confirm her diagnosis. Gratifyingly but a bit disappointingly she (the consultant) said that we are on the right path already since beta blockers are the first drug they try with migraines. I am currently on a low dose so she wants me to work up to taking 80mg a day. That should have a noticeable impact on the intensity of the migraines. She was reassuring that there are at least 4 other increasingly severe options after the beta blockers so for the long term there are plenty of other things to try if the beta blockers don’t solve the problem satisfactorily.

She also said we had already taken several sensible steps. I came off the combined pill at Christmas because supplementary oestrogen increases your risk of having a stroke if you also have aural elements to your migraines. I don’t have it often but I do get white light auras around people as part of my migraines. It even happens when looking at people on the TV. Looks very like the way TV shows portray psychic auras. I also stopped taking codeine based pain killers since long term codeine use can actually cause headaches. So I’ve already made some of the changes she would have suggested which is good of course, but is a bit disappointing since I was hoping for a more positive outcome. Of course I wasn’t expecting a miracle cure on the sight of the consultant – I wasn’t – promise, cross my heart and hope to die ! 😉 I was just hoping for a definite / new path forward but she says we’re already on the right path it is just about taking some time to let the remaining effects of the drugs out of my system and get the beta blockers up to a good dose. So it’s good news but just not new news.

I promptly crawled into bed when I got home. Took me 20 minutes to crawl out of bed after my sister woke me after 3 1/2 hours to ask me what I wanted for dinner. Thankfully my sister was working so was occupied and didn’t expect me to be downstairs to watch TV with her so I could lie in bed and contemplate moving for as long as I liked. I did finally manage to get up and came downstairs to potter on my computer. I got an email confirming that I’ll be helping out as an OU student ambassador for a new Facebook project the OU are running though March and April. I’m looking forward to being able to advise new students on the benefits and perils of OU study. Once you try it you’ll be hooked for life. Worse you could get like me and be so deep in your addiction you want to addict everyone you meet ! Some times I feel like I’m carrying round a syringe full of heroin just waiting for an opportunity to stick someone with it. Just one shot and you’ll be stuck trying to get that perfect TMA high for as long as the money lasts. And yes then you will go begging to family, your friends, your employer desperate to get the funding to do the next course. I must be more morally corrupt that I thought to contemplate trying to get all my friends addicted just like me.

And another day dawns

Hours Sleep in 24 hours :
Today so far : – 12 hours in 1 sessions 😦
Headache intensity / pain level : 1 😀
Nausea level : 0 😀
Joint / muscle pain : 0 😀
Fatigue : 8 😦
Brain Fog : 7 😦

I got woken up by a reminder on my phone that I’ve got my neurology appointment on Thursday this week. Rather a jarring way to wake up I can assure you. I really thought I might not crawl out of bed at all today but medication called so I made an effort and finally rolled out of bed. Given days of nagging I finally gave in and completed 2 more participants of data entry for my sister. So with my sister beavering away upstairs finally all participants are now on the computer – yeah ! !

I got my mum to scrub my hair so I now have slightly more pale purple and pink patches rather than deep purple and red patches. I’ll probably want to get the ends coloured pink or totally bleached out as at the mo the bottom half of my hair is a kind of normal blonde / brown colour. Having worn myself out sitting having my hair washed I sat by and watched my sister very energetically exercising on her new Wii games console. I sat on the sofa and played Chuzzle !

Well I’m taking cost cutting measures; joining the new economic climate. I’ve been using Tesco DVD Rental for years but the price has been gradually pushing up and having talked to my best friend V she mentioned that LoveFilm has recently improved their service. LoveFilm actually provides the Tesco DVD Rental service so I thought I would check out LoveFilm prices. Turns out LoveFilm run the same 2 discs unlimited for £4 less than Tesco DVD Rental plus LoveFilm does unlimited streaming on that package. So I’ve signed up for the free trial to see how the streaming works. I watched my first streamed episode of Castle today much to my delight. No waiting for the DVD to arrive in perhaps dubious condition. Tesco DVD Rental had a spate of discs that froze in multiple places. Well we’ll see how this service goes – if it goes well then in a months time I’ll keep up the LoveFilm and ditch Tesco. I’m not using the clubcard points anyway as I don’t shop for myself.

Well I’ve off to make up 250g of soya Alpro yoghurt, 120g fresh apricot, 100g fresh strawberries and 100g fresh blueberries. It makes a nice casserole dish of fruit. Definitely makes sure I get my 5 a day especially since I had broccoli, carrots, parsnip and swede with dinner. Am feeling very righteous with myself on the vegetable front today – makes up for all the other days of the year ! 🙂