Zombie Days!

[Avro]

I have had a shunt and an ETV for about 5 years and have recently turned 60.

I find that I never feel great, but have better and worse days, the real bad ones I call Zombie days. I have these a couple of times a week and if something is due to happen on one of those days I often have to cancel it and not leave the house at all. On Zombie days, I feel much more spaced out, nausea is worse, tinnitus and stability worse too and my fatigue is also much worse. There doesn't appear to be any pattern to it.

Does anyone else have similar experiences or are your symptoms more stable and either way what are your main symptoms?

Thanks for responses and stay safe,

Mark Collins

[Kirk5w7]

Hi Avro,I recognise those days, I suffered with them dreadfully, they are so debilitating.

I tried to find a cause, to no avail, but the diagnosis was that they were migraines in origin but no pain, just wipe put.

The GP was no help but my rehab consultant was, he prescribed me Pregabalin , he said many found it helped with those symptoms.

Result was many more useful days, very few total wipe outs, they do happen but less frequently and more easily managed.

I find I have less energy and a “funny head” mainly on low pressure days and high pressure often means “full steam ahead”. Not helpful in England I know but I am always glued to the weather forecast now to give me an indicator as to the day ahead. Windy days mean earplugs are necessary if I go out.

Hope this helps somewhat.

Janet x

[jobyjabber in reply to Kirk5w7]

Very interesting I hadn't heard pregabalin can help in that way thanks.

[jobyjabber]

Interesting, especially with post below. I'm the same, can't identify any pattern to it. Sometimes even a good active day can actually improve next day. other times not at all. 3 years on from severe tbi with months of single figure survival chances. I have improved loads, cognitively on good days I'm nearly normal but not all days are like that! bad days fatigue is wild, in bed wild, vestibular and vision has much less stamina, speech slows, pauses between sentences, short and irritable and yesterday I had worse brain fog yet. I felt like I had learning difficulties, lost most of my intelligence, stared at maths like it was a foreign language and I wouldn't consider driving, reactions felt too slow. sometimes if I percivere it can help but not every time. ii had a spinal injury at same time and being paraplegic is way easier than this head stuff. you're not alone.

[markman2222]

Hi,

Last shunt revision for me was early '90's and I go between feeling great to mild to almost severe headache. Essentially feels like I have a shunt blockage. After making appointments with my neurologist over the years, and he doing CAT scans and finding nothing wrong with my shunt, I quit calling. Essentially the diagnosis was, if the symptoms improve on their own, then it is most likely not a blockage and not a cause for concern.

I actually came across this forum in researching atmospheric pressure effects on those with VA or VP shunts, as I have always felt that this plays a role in how I feel from day to day.

Unfortunately, I am not aware of any studies on this, and most evidence is anecdotal. Maybe it's time I start seriously journaling.

I also suffer from severe insomnia, which I think also plays a role.

Mark