Hi All,

I've registered for this forum today as it's been very helpful to me during my still ongoing recovery and I finally feel up to the cognitive effort it requires, to post.

I had what seems a minor fall back in January 2012. I was at a work party and had been drinking, I don't remember about 2 hours preceding the fall but am pretty sure that must be due to the fall, not drinking - I did used to have alcohol blackouts, but as I am 2IC at work, I was on my best behaviour in front of customers, so presume I was not that drunk (something that still freaks me out is my lack of memory of the event and how I potentially behaved afterwards, and whether people's opinion of me has changed as a result.) I passed out for 5-10 minutes (best guess of 2 people who looked after me afterwards but I don't know them that well) and woke up 'very drunk'. Clearly now it is obvious I was concussed, but I then went to sleep on a sofa for 20 minutes and was taken back to my hotel room (at one point crawling - so embarrassed and scared that the severity of the injury to do that to my brain). I woke up the next morning, having vomited and no memory of the night before. I had hangover like symptoms so drove home (it scares me now to think how I managed it, but I did.) Later on that day someone text and asked how my head was, I presumed as I had drank a lot and was shocked at myself, then reaslised I'd banged my head. So i looked up concussion on NHS Direct and took myself to stay with a friend for 48 hours. I was sick every hour during that time. Then on the Monday morning (accident was a Friday night) I went to my GP as still didn't feel well, and he referred me to A&E.. They assessed my GCS and told me I'd recover in 2-3 weeks and I went back to work.

That week I was sent home from work as my boss said I was 'babbling' in a meeting and not myself. I knew I was a slowed down version of myself as I was driving 20mph everywhere, etc. I moved in with a friend for 3 weeks who lives close to my work and worked half days for the next 3 weeks. On the day I was sent home for 'babbling' my boss was clearly worried about me and I got really anxious so took myself to A&E again, this time I demanded a CT scan as I was convinced I had brain damage. It was clear, again I was told I'd recover in 2-3 weeks.

The 3 week mark came (I've now learnt not to give myself deadlines although still subconsciously have 'the end of the year' in my head) and I went to my GP, distraught that I was not better yet. He said he knew people who had much worse injuries than mine who fully recover, and it can take up to 6 weeks. He told me I had PCS and also some PTSD and told me some GP's would offer me anti-anxiety tablets, but I should try without them first. By this time I was nearly working full time and feeling awful, not getting much done and at weekends I'd have such bad anxiety I would think I was going to launch myself out of my bedroom window against my will. I could not move or communicate for 2 hours at a time, not even call a friend to say how I was. I started being very afraid to be on my own and engineered friends coming round every night and weekend (I am very lucky to have such great friends but so unlucky to be single and live on my own whilst this is going on.) No-one had told me at this point what to do to get better, or even what not to do. I have had to figure this all out myself.

3 weeks later, no change to back to GP. Prescribed anti-anxiety meds Citalopram, totally freaked out that I had been given them, had an very disassociated weekend and was terified. Took one pill, was very ill and have not taken any more since. Sometimes I wonder if I should have, sometimes I'm glad I didn't.

I then went on a pre-planned work trip to LA in April 2012, having already postponed this by 8 weeks (and with GP's telling me I'd be better in 3-6 thought this would definitely be ok!) and I had to go for my work. I had for the first time in my life a panic attack at the airport and had to call my Dad who coaxed my onto the plane. When I was there I was ok anxiety wise, I got through it by telling myself each episode woud pass and counted down the days until I came home. I have a good colleaague out there who supported me well too. I worked short days, had constant headache and nausea, off balance, etc ,etc - will come to my symptoms later.

I started cranial osteopathy for my headaches - and I really truly believe it works. My headaches really eased after that, I went weekly for 10 weeks and now only go when my head is bad (see later - I now know headache is my last symptom so I try not to get that far.)

I also started acupuncture for the anxiety and other PCS symptoms (I read the that USA Armed Forces refer PCS sufferers for it) - I am not sure if it works - I went weekly for 10 weeks and now am on fortnightly - I think I benefit a bit from the relaxation for an hour and my acupuncturist is a great talking therapist too - as I am desparate for anything that can help and I can't see how it can do any harm, I continue to go.

Once home I went to the GP and asked to be referred to a Neurologist. They said I didn't need it. I dont' have private healthcare but my boss offerred to pay for me to see one privately. I saw a private GP first to get the referral - she suggested I had blood tests for B vitamin deficiencies - I did and there were none but I now take a good multi vitamin and mineral supplement and extra magnesium - I think these have helped my general wellbeing and the nausea so I recommend them.

So then I saw the neurologist in May 2012. He did some balance tests and listened and said to try not to give myself dates and that I needed to restore my confidence and that I must remember this will pass. He didn't really give me any advice on how to recover quicker, just told me to believe it will pass. I asked for an MRI but he said he's pretty sure it won't show anything up so I haven't had one.

I then moved in permanently with my friend near work (so grateful) to cut out 2 hours driving per day and started to feel slowly better by limiting my activities and working shorter days. I worked out that resting before I did something out of my comfort zone helped and I slept better knowing I was not alone in the house. I did start to fear leaving my 2.4 mile comfort zone of house-work though.

I took a week off work and rested and even got the energy to drive to Norfolk. I could only do this as I was going to see a great friend who promised to come and get me if I couldn't complete the drive. When I got there I was so fatigued and ill I couldn't even talk, so I lay down for one hour and learnt that helps a lot. I was waited on hand and foot and drove home 4 days later, shutting my eyes in a dark room as soon as I arrived home. This advernture (something I did most weekends prior to the fall) did not help my PCS, but helped my anxiety - it's so hard to get the balance between the 2.

Then I went to a music festival in June. I thougt I would be ok as I had arranged to travel with a friend and have an afternoon nap everyday before going on site and stay 2 days extra to rest between travelling there an back. By day 3 I was a wreck (by the way I haven't drank alcohol or caffiene since the call) and was scared how I would get home. I had left early the last 2 nights of the 3 day festival and was only onsite 2 hours the last day. I had to get a friend to take me in half way home and she took the following day off work to get me the rest of the way. When I got home I had never been that bad, completely off balance, even when lying down, felt so sick, nausea, headache, brain fog, complete fatigue (concussion fatigue not sleepy fatigue) and a new symptom - ringing in my ears :-( I rested enough to get to my acupuncture and that day it definitley helped.

It took me 3 months to get back to where I was before that festival. I am still very angry that no-one told me not to go. I did not know that noise and crowds would be bad for me, although I hadn't even been able to go to a supermarket before that without being very ill so perhaps should have guessed.

I then saw the neurologist again as I was so concerned about how ill I was.
My GP then referred me for a follow up on the NHS and I saw the same neurologist in July 2012. He told me to take 6 weeks off work and get as much cognitive and sensory rest as possible and again told me it will pass, I will recover - by now I was very questioning of this.

So I went to Dubai on holiday for 2 weeks and developed a headache on day 3 that didn't pass until 5 days after I returned home. I shouldn't have gone but thought sitting on a beach reading for 2 weeks and not leaving the hotel was a good idea. In fact, I hadn't read a book since the fall and this hurt my eyes so much, I've not had a day since without eyeball ache. And eating in noisy restaurant each night and bright sunshine all day was a bad idea.

So I returned, thinking I'd wasted some of my precious time off (it took a lot for me to ask my boss for this time off and for me to plan my work around it). I then spend 3.5 weeks with support from amazing friends, resting as much as possible. It was the hardest thing I've ever done and took a week to start switching off. My routine was:
lie in until 10am
take as long as possible to shower and get ready
eat breakfast (internet delivery so no supermarket visits)
go for a walk (I have now developed a keen interest in this, something I'd have considered too boring/lame before)
take as long as possible to eat lunch
lie down and listen to an audio book (life savers these are) in a dark room but if I started to fall asleep I'd have to get up and do something different as it would seriously disturb my nightitme sleep
have a friend visit
watch 2 hours maximum quiet TV (couldn't think of anything else to do by this point)
go to sleep

I had really bad depression one week where I had 3 days without seeing anyone but I made it through. My symptoms did not disappear but got a lot better. I learnt the most important lesson which was the order in which they appear - so now I can try to go home and lie down in a quiet, dark room before they progress.

My orders is:
tinitus (constant but gets much louder when I've done something too stressful)
eyeball pain (constant but gets worse - eyetest revealed no problem - wearing sunglasses helps)
tingling in my sinsues by my eyes
tingling in my head, like the brain nerves are feeling frazzled
brain fog
neausea (eating little and often helps and usually it passes by mid afternoon)
going off balance
headache
debilitating fatigue
anxiety
depression

The first week back at work (6 weeks ago) was hell - I was exhausted and headaches and nausea returned. I took it easy in between work and the following week was better.

I then saw a neurologist 4 weeks ago and have been referred to NeuroPsychologists 4 hour appointment at Oxford, although this will not be for another 8-10 weeks. She prescribed Migramax which helps a bit.

The last 2 weeks I have done too much again and had an awful weekend. My best friend returned from Australia and I wasn't well enough to drive to see her. This really affected me. I didn't sleep well last night. I am thinking I need another week off work doing my old routine but can't ask my boss for mre time off and have my 'busy 3 months' coming up at work.

I realise I've rambled but hope my story might help someone. I am slowly recovering but it's so slow I wonder if I've stopped. Does anyone have any other treatments, activities they recommend or experiences similar to mine but you've fully recovered? I worry I'll never have my life back and feel so trapped, everytime I book to do something I worry I don't be well and then end up cancelling it. I am still living with friends as worry when on my own. My sypmtoms are really bad today.

Does anyone have any recommended experts they have seen and would recommend in the UK? I still think I've not spoken to anyone that understands. Or any groups that meet up with similar experiences?

Thanks for reading and I hope I can help others on here as much as I hope I'll get help from responses.

Hello, I read your story and very much relate. I've been ill since May this year and still suffer much the same.

My day is a lot like yours.

I usually wake very early - 6 or 7... lie awake for several hours (I look at the clock one minute, look back the next and several hours have gone by. I'm always time shifting...), have a small breakfast, go back to sleep. The tinnitus is always at its worst when I wake from any sleep. Then I eat some lunch, move to the sofa and lie there for a few hours, maybe listen to radio 4. I'm trying not to sleep too much into the afternoons or I can end up not getting to sleep until 4am and waking at 7am.

I was trying to go for a daily walk but the last month or so I haven't been able to because I always get so tired I just want to lie down in the middle of the grass and then I get in a stress about how I will get home.

A friend took me for dinner a couple of weeks ago which was ok for an hour or so but then started feeling very drowsy, all i could think about was falling asleep on the table. Thank god he was driving me home.

I'm in the UK also - in the South East. Have you contacted Headway? They have groups, too, I think. I keep forgetting to call them.

Btw, I was told Citalopram can makes people more anxious the first week or so they take it so that might not be best for you at the moment. My dr prescribed me diazepam to help with the anxiety which I take maybe once a week at most. It depends how often you're getting the panic attacks.

Beta blockers can be very good for panic attacks and have few side effects. May be worth asking your doctor about some as-and-when type medicine for the panic.

Welcome to the forum - there are a lot of good people on here with a huge amount of information to share.

I had a trip myself in January this year and all I can say it was a life changing event and To be honest I am surprised you have been able to do so much post injury. Also impressed that you could return to work as an accountant with your injuries and symptoms - but hey everyone is different

You may have come across Headway in the UK - these are probably one of the best sources in the UK. There is a good list on this link http://www.channel4.com/health//micr...rain_help.html

The main advice from every one seems to be rest, healthy diet and avoid PC's and high intensity video

Wow long post. So sorry for your expeirences. You are at the right place. Alot of the long time posters here have ongoing symptoms so if you could break your posts up into smaller paragraphs with several sentences. Long paragraphs can make some lose there place repeatedly.

As you are already noticing many Drs don't recognize or treat PCS effectively. Rest is crucial. Not just physical but cognitive. I.E. NO TELLE, no computer, for some reading or even subject matter can be an issue. Audio books tend to be a good activity. I have just had my third ER visit in 4 months and the ER Dr said fishing is the only thing he knows that might be recommended.

The kind where you sit on the bank and stare at your line in the water. Nutrition is important. Search this forum on vitamins and nutrition. There are alot of things you want to avoid. And alot of supplements you may want to add. I feel frequently there is an emotional component to PCS which may need addressing as well. Many here have some kind of anxiety and a med for it, I do.

Stress is a major factor in how many feel. Be it intellectual, physical, enviromental or emotional. Many times as I go thru my day I literally fell like I am walking thru a minefeild trying to avoid that next stressful trigger. The trigger that causes my headaches, fuzziness, et. al.

Hopefully Mark in Idaho will catch your post. His advice is concise and accurate as this is all very familiar with him. He is very knowledgeable and gives great advise.

my experinece is very similar to yours. "and at weekends I'd have such bad anxiety I would think I was going to launch myself out of my bedroom window against my will" this is EXACTLY what happens to me. during the weekends. dinīt even told it to my doctor because I was too scared that heīd thought that I am going crazy and had me hospitalized. I experience very, very similar symptoms, even in very similar time frame.

UK Accountant,

Welcome to NeuroTalk. Wow, what an experience. As rmschaver said, rest is the most important. It appears you took time off to rest but did not use it well to get good rest.

As I call it, quiet rest is the only worthwhile way to recovery. You are fortunate that your memory appears to be good. You long post demonstrates that. It also shows you are struggling with anxiety. This is common. Anxiety is the worst thing for recovery from PCS.

You really need to arrange an extended period of time off. If you do not get ahead of this, it will eat your life and spit it out. Quiet rest with controlled simple stimulation to keep a moderate blood flow to your brain will be best. You need to learn to recognize when you have tried too much. Getting spacey eyed or a bit dizzy or any change in perception means you need to stop and rest with your eyes closed.

Your B blood work was good but the normal range is too low for someone with a brain injury. Your B-12 level should be about 1000 pcgs/mL. The low normal starts at 200-300 pcgs/mL. A 500 to 1000 mcg B-12 daily would be good plus a B-50 complex and high potency multi. No caffeine, MSG, alcohol, or artificially sweetened drinks. Get good meat protein.

When you start feeling better, wait a week or two before adding an activity. Good days does not mean your brain is healed. You need the good days for your brain TO heal. It heals very slowly when you are fighting PCS symptoms. Linking as many good days together as possible is best. Two steps forward and one step back will not be much help. Just because you can do an activity and not feel bad that day does not mean that activity is OK. Most relapses are delayed to the day after the activity that caused the relapse.

There are likely more things to consider but I am having a slow day. Sundays/weekends tend to wear me out.

My best to you.

Hi,

You will get more info here than anywhere in Britain. The one charity set up to support brain injury in England never answers the phone.

So welcome and keep in contact you are not alone.

Welcome, I am also in UK and relate to what you have experienced. I have been off work continuously now since March and am currently on rest, walking (with my dog to pull me home), sertraline 300 mg daily, gabapentin 400 mg daily, naproxine 500 mg daily and omeprazole as a stomach lining protector.

My gp has worked with the neurologist to get my meds right to alleviate some of the pain but it is all just management rather than active treatment. Good luck with your neuro-psych appt, I am still pushing for a referral myself.

This forum is a godsend and mine of information and support for all of us x

Wow, thanks guys, I really appreciate all those responses. I'm still really angry that the only place people understand what I am going through is here though!

I was aware when I wrote it all down that it was far too long and rambling but I found it therapeutic and think I might use it to give to people in the future when I find it hard to explain or forget things about my symptoms.

I got my Neuropsychology appointment through today, for the beginning of November, at John Radcliffe Hospital in Oxford, UK. It is a useless letter, it doesn't tell me what the appointment will involve, only that it is 2-3 hours long and can I take someone with me that knew me before. It is with Dr Ian Baker.

Has anyone been there for such an appointment or can anyone tell me what they are going to do?

Should I make myself as ill as possible beforehand to get maximum effect/so they believe me?

I really can't decide who to take as genuinely don't think anyone I know understands, but have plenty of offers of a lift as would be incapable of getting myself there and back alone anyway - but someone who is willing to give me a lift is not necessarily the right person for the appointment - I presume I need someone to back up my symptoms and how I've changed? I find some many of my friends are so supportive but really they just think I'm milking it and don't understand my real issues and I don't want that to affect anything that could come out of this appointment.

If anyone has any advice on this I would be grateful.

I have also read some posts where people keep saying cognitive therapy helps - how does it help exactly? I do have anxiety issues but can hanlde them and don't like people focussing in on them as really I just want the PCS fixed then the anxiety will go!

I have a lot of anxiety today as I am meant to be going away this weekend and am not sure if I should. Decision making has become incredibly hard and I hate letting people down and fear them thinking I am depressed becuase they don't understand PCS.

And one last question I've been trying not to ask but really need to - is the fact that I have continued doing things for 8 months meant that I won't fully recover? Does now resting actually cause the damage to be permanent or should I be just doing as much as I can now and resting later? Really need to know whether to be tough on myself here - no docs have said not to be at work still but I don't want to be like this forever - but also I don't want to affect my career or professional reputation.

Thanks for this andromeda,

I have contacted Headway but haven't found them to be useful, mainly becuase I don't know what I am asking them for. How have they helped you?

Thanks re. Citalopram - that's exactly why I didn't take it actually, I was freaked out that it would make me worse before it made me better, and I didn't think I could get much worse at that point. Since then I've manaed to be less anxious, but it mainly happens when I have something I have to do/somewhere to go outside my comfort zone and I fear being ill and stuck somewhere helpless. It is coming back badly this week as I have plans for the weekend and I can't decide whether to go away for it or not.

I have taken some beta blockers and keep them in my bag, they have helped me get on aeroplanes but I really find they only take a small edge off it, not enough - however I don't want to take something like diazepam which can be addictive, so I am sticking with these as my 'go to' if needed.

Have you found any neurologists that are experts in PCS in the UK or are just seeing non-experts?