New symptoms years later

[Marion]

I had quite a big bleed 5 years ago, but no cause was found.  I had many problems in the days after the  bleed such as headache, difficulty swallowing (it felt like anything I ate was stuck in my throat), problems with temperature control, fatigue that meant I slept for around 16 - 20 hours each day and my eyes closing even when I felt quite alert. 

 

I hoped they would all fade with time, and they have a little, but I seem to be accumulating new problems.The fatigue is still debilitating.  I always knew that if I did too much, then the headaches would be agony and I would develop new symptoms, but the neurosurgeon said that it couldn't do my brain any harm, so I tried really hard to return to a normal life. 

 

I went back to work part time and just for the afternoons (because I couldn't get out of bed until 12pm) after 3 months and the occupational therapist told work that I should slowly return my hours to normal. When they first gave me one morning, it was hard, but I got through it. 

 

When they gave me 2 mornings, I soon lost my hearing completely.  At first they treated this as a seperate problem (at ENT), but they couldn't find the cause of my intermittent hearing loss.  One ear couldn't hear anything and the other could only make out sound in a simple environment and I had no idea what was being said when there was other noise in the room. 

 

I also have some other problems that just seems like my brain is randomly failing.  I would misstep on the stairs or not be able to see a word in an alphabetical list after looking for it over and over about 10 times until someone put their finger on it.  Some days I couldn't speak properly. 

 

Sometimes I found time management or organisation impossibly hard. This made work extremely tricky, along with the severe headaches I would get, but I soldiered on.  When ENT discharged me after finding no cause for the problems, I wrote to my old neurosurgeon to see if they could explain the hearing loss and other problems. 

 

By the time I spoke to him on the phone, I had started to suffer waves of nausea, virtigo (2 types - where I felt I was tipping upside down and another where I felt still and my vision rotated out of sight so I was left seeing blackness, which made me blink, reset my vision and on it would repeat over and over making me very nauseous and unable to move at all for 4 hours. He couldn't explain it (he did some MRIs) so referred me to neurology. 

 

I am still waiting to see someone from neurology one and a quarter years on, and since then I have started with muscle twitches  every day (in random muscles all over my body which can very in strength from very mild to ones that make my limbs jerk up about a foot in height) and a flickering of my vision (like a fan is catching the light).   

 

It stops if I lie down and rest. The optician has checked my eyes twice this year and found nothing wrong.  I've also had times when I couldn't figure out what day it was - I tried desperately to think of what I had done the day before (a weekend), but couldn't think of anything - 

 

I  couldn't tell the time (really hyperfocusing for a long time allowed me to figure out how many minutes past the hour it was, but I couldn't take in the hour too). It didn't last too long and then I was back to my new normal, but it was long enough that it was scary. My brain fails in all sorts of weird and disturbing ways.

 

Has anyone found that doing too much has brought on new symptoms such as these?  I'm trying to figure out (while waiting for a Dr to talk to me) if this is something new adding to the problems I was left with after the SAH or if they are just due to doing more than my brain can cope with.

[ClareM]

Hi Marion

 

You really do seem to have gone through the mill since your bleed, I really feel for you. Have you tried chasing up your Neurology appointment? I know there are delays post Covid but 18 months is a bit excessive. 

 

I had my bleed 7 years ago and in early 2021 I developed a stutter for no reason. I had speech therapy who eventually referred me to Neurology. Though I had to wait a long time for appointments and a subsequent MRI I was recently diagnosed with Functional Neurological Disorder.

 

A much-misunderstood disorder with little support. Basically, it is a problem with the networking in your brain. I am not saying that this is your problem, but it may be worth looking into, apparently it is quite common immediately after suffering a bleed. Neurology do not know if mine was related to the bleed or other issues post bleed.

 

Don't give up, hopefully you'll get some answers soon.

 

Clare xx

[Marion]

Thanks Clare

 

My GP has marked my referral as urgent and tried to speed it up a few times with no luck.  He has now advised me to contact my neurosurgeon again to see if he can speed it up as the neurosurgeon made the original referral to neurology.

 

I've just had a look at the wide range of symptoms that fall under FND.  It seems to describe a group of symptoms but not their cause.  My concern is that I keep developing new symptoms so something is getting worse and I would like to know what is causing my decline (and if it could be halted by reducing the load on my brain)  but I am getting the impression that they are unlikely to be able to tell me what is going on. 

 

I get the impression that they wouldn't want to scare me into giving up on activities, but I am more the other way, I will carry on with increasing symptoms until my brain simply gives up and calls it a day.  For some reason, my instinct is to fight my fatigue and just try harder which never works.  Have you found your FND symptoms have increased over time?

[CharlieD]

Hi Marion, 

 

Sorry to hear you have had such a difficult time. I have many times throughout this journey where I have resented the change in me and tried to ignore it but unfortunately it just isn't possible. I can't offer any advice on the medical side but I can say listen to your body. If your body is saying you need more rest take it. I find when I over do things the next day will be very hard. 

 

This weekend I arranged to go to a Xmas Market in Germany with family( I currently live in Amsterdam). We drove all the way and spent a whole day there and then drove back. I powered through but knew it would probably be too much for me.

 

Yesterday I couldn't think straight and had awful headache so spent the day in bed. TBH I would still do it again as I don't want to give up those days but I know it means recovery time and I try to plan for that. When the fatigue is too bad I struggle with words. I was someone who never stopped I filled my day's every day.

 

I agree keep chasing the appointment. Perhaps call the hospital and speak to the department to ask about the waiting lists and put your name down for a cancellation. But in the mean time the best advice I got and took (from this forum) was listen to your body and be kind to yourself.

[Marion]

I know what you mean. I hate sitting around doing very little on holiday and used to keep very busy. On the last trip around 4 years ago I seemed to spend most of the holiday sleeping off the journey so now I don't go anywhere.

 

It makes me sad to think of that so I don't dwell on it. My mood at least is very good most of the time, I'm just really frustrated with my situation.

 

I dread big events. Everyone else will look forward to them, and I do to, but I also worry, knowing I'll suffer and just hope nothing dreadful happens (there was one slight mishap and one near miss stepping into the road last time because my brain had just had too much, but as a mum you need to be there for them so I just tried to soldier on). 

 

Asking to go on a cancellation list is a great idea, I'll do that as soon as possible.