Bad taste

[little-anne]

Has anyone had experience of loss of sense of taste and smell after being on Calcichew for a while. Its not due to injury as it didn't start until at least 3 weeks after. Also on gabapentin, can taste a little in the mornings before taking any meds but otherwise nothing...

[RecoveringH]

Best to check with your doctor, delayed reactions can occur. I lost taste and smell, taste came back first, then smell just came back recently fully and it was a surprise! A nice one! Good luck.

Best

[little-anne in reply to RecoveringH]

Thankyou RecoveringH, How long did it take to get your taste back, was it a gradual thing or did it coincide with anything.

[RecoveringH in reply to little-anne]

Often in the early days you don't know you have lost something because you cant remember having it. As I started to become more aware each day, I began to realise I was lacing my food with 3-4 garlic cloves and up to 3 chilli's and it dawned on me, I couldn't taste or smell! My meningitis event was in 2010 so it took a year to raise my head above the waters of BI, to notice something was wrong (I live on my own and not close to family or friends). I then started consulting herbal practitioners and discovered my diet was likely my source of low immune system so changed it completely in 2011. That was the start to healing. It took about a year to notice smell and taste was not there as I was dealing with more serious issues of proprioception, blurred vision, numbness, hand/eye coordination and rhythm issues. Exercise completely dropped away for maybe a year or more, devastating as I was fitter than most of my friends in my 20's being an aromatherapist. Taste returned early 2014 and smell has just returned fully a few months ago.

I went for a walk last night, my usual brisk 20 min before bed to help me sleep and my legs flew up in the air to make each step, they used to feel like two lead weights without plumb lines going all over the place. I counted just three scuffs, where my foot misses the ground, which is just such an achievement for me. I count my blessings every day that I have a body that does what I ask it to. It is so incredibly debilitating to confidence when normal living is compromised, you lose trust of self, you stop listening to your inner voice, you feel like you are being attacked by your own body, anyone else making any narky comment was just too much to handle so I withdrew and when I could focus, I started playing a game on the computer. At the time it was free, its called luminosity. It measures your response times, maths ability, language ability etc. I have reports from the early days when I was just awful, so slow, careless and unfocused. I also have reports where I was becoming average in all things except memory. Then they started to charge and I stopped doing it.

Recovery has been long, hard, patient, hopeful and awe inspiring as you build a close affinity with this shell that we carry around. I will NEVER take my body for granted again. I am just so grateful I can plan things again, memory is still work in progress but happy language and communication skills are back, my old memories are back, my old views of my earlier self are back and now I must amalgamate them altogether to form a new person to get back and earn money. All this recovery is not cheap and I never had state support. I am also glad of this and hope an employer will be able to understand someone can regain their brain after meningitis and be a successful employee. Wish me luck.

Sorry for the complex answer. Nothing is as straight forward as allocating a time for this and a time for that to recover. Varies. In the early days, my advice to you would be get rid of your guilt and sleep when your body yells at you. Lie down when you have a headache and get some fresh air for short walks when you can. As for friends and family in the early days, you must explain to them so they completely get where you are. That removes the source of frustration and friction which can boil emotions over, something you just don't need in the early days. Take good care and trust your senses will return when they are ready. Certain meds have side effects so check with your doc that this isn't one of them, might be able to swop meds for something that suits you better?

Best.

[BaronC]

I'm on Gabapentin. No loss of taste here, but huge weight gain, permanent congestion and numerous other side effects...

Baron/Andy