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Tired All The Time

Hi Everybody, I’m here as a parent trying to help and support my 24-year old son with VM.

He is having treatment with Dr Surenthiran (whom I believe many of you know) which so far consists of a titrated dose of pregabalin.

He says this has helped him a lot, but he has the ubiquitous problem of being ‘Tired All The Time’.

It is some time before he sees Dr Surenthiran again and he is considering whether it is worth seeing his GP in the mean time.

From all your vast collective experience can you tell me if it is likely to be worth his while seeing the GP? I get the feeling that there is not much she could do. But do any of you have helpful experience or suggestions?

Many thanks

Don

Tiredness is a migraine symptom. Amd my #1 issue more than even dizziness. I am hoping someday the med will help with this. Otherwise relying on sleep amd exercise to fix this for me.

Hi Don

Welcome to Mvertigo!

I admire your empathy towards your boy… :slightly_smiling_face:
What a great support you must be to him!

Can I ask how long he has been taking the Pregabalin? I take Amitriptyline and have been since December 2018 and some days I still feel extremely tired… although I would say there has been a decrease. Perhaps it is my body adjusting to the meds as I do keep increasing doses. If the fatigue/tiredness is a real problem for him I would suggest emailing your neurologists secretary - you can call the main switchboard and ask for neurology for his secretarys email if you are unsure?

Personally me asking my GP about this wouldn’t bring much joy as she would probably say I get intouch with the neuro that prescribed the med as they can give you their best advice…

It would be ideal to know the time frame and doseage he is currently taking? Simply because if it is fairly new to him his body will still be adjusting and it may just be a waiting game to see if it settles… much like mine.

I hope this is helpful to you… :slightly_smiling_face:

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Hi Don,
You sound like such a supportive, kind parent.
It’s hard to put into words how rough MAV can make one feel. We look alright on the outside, but some days MAV can truly feel like being a living dead.
I’m wondering about your son’s life style at the moment — is he working, studying ? Is he doing a lot (maybe too much?) or very little (maybe not exercising enough ?).
I personally have a tendency to take on a lot and not slow down. MAV has taught me that I need to rest, because my brain is like wounded. I also see Dr Surenthiran, and one of the things he told me was to avoid undue exertion and exercise, as this would drive the nail further into my head.
I rest two hours every afternoon. I take micro pauses during the rest of the day. What may look like doing very little to someone who’s well can actually already be a lot to someone with MAV.
Perhaps your son feels he should live up to expectations of society to be very active. But with MAV we need to rest, listen to our body’s signals that we are tired, while avoiding becoming completely inactive… difficult balance to strike!

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No harm in him discussing this with his GP sometimes they suggest they speak to the consultant on his behalf otherwise try for a telephone appointment with the consultant. Tiredness is a side effect of many drugs. Often people get used to it after a while. Some people are very med sensitive and can only tolerate very low doses of some drugs because side effects don’t diminish. If must be hard trying to grasp some understanding of this condition from outside. It’s bad enough doing so from the inside but what you need to remember is this condition results in the brain using so much power just to maintain balance (something it normally only barely has to think about as one might say) other necessities are totally drained of resources. @MNEK18 and @LucyLabrador have summed the rest up nicely for you. Hope our suggestion helps. Helen

Sorry I should have said I am in the UK and I now notice most of you are in the US.

So maybe it was another forum where I saw people had been posting about seeing Dr Surenthiran.

Anyway, any answers on being tired all the time welcome although I imagine it’s just one of those things you have to deal with.

Don

Hi and welcome. Just a very quickie. Please don’t go. Oh no we are not, all in the US I mean. There’s a good number of countries represented on here, Plenty of active members from the UK, Ireland, some from Australia, Switzerland and quite a few who are from other countries but haven’t actually said where exactly. It’s still holiday time so it’s bit quiet and who you get to speaks to can depend on the current active time zone but I’m UK and I’m here and now with my cereal bowl and spoon in the other hand. Welcome again, Helen

@Astarte please don’t create a duplicate topic. Just continue to post on the original one if the subject is the same. I’ve now combined them.

FYI Plenty of UK users: I run the site and live in London. The web server is in Paris :slight_smile: