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:

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Hi Everybody

Thank you all for your helpful replies last time I was here. I dropped by to see if there was any helpful advice I could gather for my son Robbie who suffers from vestibular migraine. Sorry I didn’t come back till now but life got in the way and I also think to be honest I lost the link for a time and couldn’t find it again. In any event it seemed that Robbie’s medication was helping and things were improving for him.

Well that was certainly true. He’s been a lot better and has since taken up a highly demanding career teaching and caring for children with special needs (e.g. autistic spectrum) and nowadays frankly if he is TATT (which he is) I tend to think “I don’t blame you. So would I be if I did the job that you do.” He really does have a much fuller life now (he’s taken up guitar lessons and he tends to socialise with people at work which he didn’t use to do and he still plays golf off scratch and competes in the County Championships). So really so much so normal. But he broke down last night and said that he finds it all so difficult and he is upset that his medication hasn’t taken him to where he expected it would. Dr Surenthiran told him to titrate up to maximum pregabalin dose of (I think?) 300mg over a period of 2 years and when he got to that level his system should ‘reset’ itself. From what I had read that seemed optimistic but I suppose doctors are in the business of giving hope. So really externally to us it seems that his life is a lot better but to him who is living it I think he really finds it as difficult as ever and particularly because he has this belief that things should resolve when he reaches maximum dose. He also has candesartan for BP lowering just to complete the picture.

As I understand it Dr Surenthiran’s NHS clinic has now closed, but really all Robbie was now getting from him was telephone support every few weeks and visits to the audio physiologist for exercises and the drug regime being monitored by the GP without any intervention. I am really here to ask if all your collective experience can give us any more avenues to try? Dr Surenthiran really did help, and we could go back to him privately, but it would just be more of the same and as I said Robbie hasn’t really ended up where he wanted to be. So I am wondering if there is any sense in which the natural break from Dr Surenthiran might be a good opportunity to try someone else who may have a different approach. Or is there no other approach? I know last time I was here someone mentioned Amitriptyline but I had that once for a minor anxiety crisis and it made me feel as though someone had hit me between the eyes with a blunt instrument. But was that just my reaction and not being able to get on with it? Is it a useful approach for some of you?

Or is there another good UK specialist out there that we could try who might use a different regime? Any suggestions gratefully received. All me and my wife want to do is find him the right (or the best available) answer. And of course his condition makes it difficult for him to find his own answers because he is just spending so much consciousness trying to keep things on an even keel and keep the symptoms at bay. In case it helps he is 27.

Thank you all so much in advance for any help you can provide.

Kindest regards

Don

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Hi Don and thanks for the belated vote of thanks.

Sorry to hear your son Robbie is struggling once again. Or maybe he just never stopped. He may have to face the possibility he’s bitten off rather too large a chunk of stress in his career choice to be compatible long term with his condition. Unfortunately He wouldn’t be the first person to have to rethink his career choice because VM got in the way and I’m sure he won’t be the last.

With this condition expectation management is rather important. If Robbie was expecting that there was some sort of guarantee that as soon as he hit a certain drug level it would all simply ‘Go Away’ he could be in for a huge disappointment. For many people it’s a chronic, ongoing, long term condition. As you say maybe doctors preach hope. I don’t know. I do know no doctor has ever told me it would go away. None have ever told me it wouldn’t either so maybe you are correct. I found generally they prefer not to discuss it at all.

Doctors obviously aren’t expecting any miracles if I tell you that the criteria for ‘success’ of a preventative medication is set at 50%. Thats a 50% reduction in frequency, duration and intensity of attacks. That’s considered a successful treatment. On a personal note I managed 3 years six months attack (but not symptom) free period from the time I started medication. The doctors were astounded. Looking at it that way the term ‘preventative’ really is rather misleading term.

I’d suggest that now is the time for you, as a family and that particularly includes Robbie, take some time out to really begin to understand the condition he’s suffering with. To truly get to understand it. It can be got under a certain amount of control by various means, medication being the one he’s attempting currently but look or maybe look again, at the rest of the treatment package. That includes diet, lifestyle modifications (from sleep hygiene through to, most importantly, stress reduction). So far Robbie has been lucky. The meds must have helped enormously or he’d never have mastered all that teaching. Unfortunately all that stress isn’t helping. Suggest reading the forum’s Wiki pages and most particularly the FAQ document written by several top US specialists. Not only will it give you many tips it will also give you more of an idea of what Robbie is dealing with.

Wherever you go it will just be ‘more of the same’ I’m afraid. That’s all there is. Whoever you see in mainstream medicine treatment always comes back to the same regime. The same treatment plan. Take preventatives, and adapt the other lifestyle changes, try the migraine diet, take supplements (used far less in U.K. than other countries this latter). There is no ‘cure’. The root cause is unknown still as yet. Doctors in general practice and most specialists simply prescribe according to the U.K. NHS Guidelines which are out there on the internet for anybody/everybody to access and which take to try Topiramate, Propranolol or Amitriptyline. To illustrate how closely doctors follow these NICE Guidelines you only need to know no doctors in my own practice are aware of the new injectable migraine treatments simply because although now (just) available on the NHS they are still only licensed for use in specialist clinics and GP/s work on a need to know basis only. There are a very few balance centres and few specialists in London such as Dr S, Dr Nicholas Silver in Liverpool who use a wider variety of preventatives and offer case management but there’s no magic cure.

FAQs answered by Neurologists
Providing your trust levels on this site are sufficiently high which owing to your long absence may unfortunately not currently be the case.

This one too might give you some ideas of what else could be done, apart from medication, to help Robbie obtain better control. And it’s nice and brief too.
https://www.thewaltoncentre.nhs.uk/uploadedfiles/documents/Chronic%20Migraine%20Patient%20Information%20Sheet.pdf

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Hey again.

Yeah the drugs work in part by ‘putting the brain to sleep’ so lethargy is to be expected.

I would try to get a referral to the London Royal National ENT hospital, to their oto-neurology dept? Unless you want to go private?

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So that’s what’s causing it! I’ve complained to my other docs (not neurologist) about being tired until noon even though I get a 7+ hour night. I’m on CPAP, so I knew that my apnea wasn’t it, but just couldn’t figure it out.

I have trouble recognizing when I’m having an episode because I’m dizzy almost all the time. It’s easier to keep track of the times I’m not dizzy. Come to think of it, on days when I wake up without the dizziness I’m not tired.

Thank you for saying that, another mystery resolved.

Hi Don, I’m new here too. I’m glad to see you having patience with your boy. I often think people think I’m just an old man moving toward the grave.

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When it comes to being ‘tired all the time’ @turnitaround is correct. When my own GP started me on Propranolol she said ‘that’ll slow you up a bit and that will do you no harm’. Theory is We MAVers are supposed to be learning to be more relaxed and laidback. Should be into meditation, yoga and so on to combat all that stress. In addition it pays to remember MAV is classed as a ‘balance disorder’ and the brain uses far more of its capacity keeping us upright and as steady as possible than it needs to do with people who don’t have this condition and that in itself is tiring.

Thank you so much everybody. Much as I expected but it’s good to have confirmation from people who know.

turnaround suggests: I would try to get a referral to the London Royal National ENT hospital, to their oto-neurology dept? Unless you want to go private?

For which many thanks. We will certainly go for a referral there as suggested but we are also exploring the private option. Does anyone have any comments on that? I imagine in the end it may be just more costly for the same result but at least then we would know we have tried all options. Does anyone have any positive experiences of going private they can share? Certainly with Dr Surenthiran we saw him privately first for one session after which he transferred us to his NHS clinic which has of course now closed.

Also Robbie has been waiting for a referral to Charing Cross but they have messed it up and it has been delayed. Does anyone have experience of that unit?

Thanks for the link to the 12 questions. I found that I could access them so I must be ‘trusted’ to that level (in fact I did get an email yesterday saying that my trust level had been increased!). I will try not to lose the link again and keep coming back here in the future.

Thank you so much to everybody here. And hi to TexOkie - thanks for the greeting from another newbie! And thank you all for your encouraging words about supporting and being patient with Robbie. But of course like any parent all I can say is that he’s my son and I cannot (and wouldn’t want to) do otherwise.

Don

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And thanks also to Onandon03 for the detailed piece on management of expectations. This is very important as Robbie says he ‘just wants to get healthy again’. I’m going to have to think seriously about that topic.

Don

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Having one health condition doesn’t make you ‘unhealthy’. We’ve people on here who go trekking through mountains, go skiing etc. People still live their lives with say diabetes or whatever. VM can be similar in practical terms. Just tell him from me he is not unhealthy now. He’s just one 27 year old who has an ongoing condition of which he needs to be aware and which obviously currently needs additional attention and treatment. He may need to take preventatives and follow some form of treatment for years but it need not stop him living. It’s a condition that can be managed in due course and hopefully will not cause much regular inconvenience. For some people it can even go into remission for years on end. It tends to resurface however particularly in times of acute stress and sometimes just ‘because it does’. Acceptance is the key.

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The answer to that will depend on where people live I suspect. In most places expertise is patchy and that’s an understatement.

Some people in some places receive excellent case management via an NHS Migraine Clinic. Others do better by going privately. Main advantage of private is speed. You won’t wait long but as Robbie already has a diagnosis is that important? On the NHS people just wait and wait. Now with Covid Some places actually have waiting lists to get on a waiting lists and closed lists.

I’d suggest rather than thinking ‘private v NHS’ better to look to find somebody who offers good ongoing management which,IMO. is key. As I assume as you are waiting for Charing Cross I think you must be located are in the South East. We’ve many participants from that area although I suspect you will find most roads lead you back to the consultant Robbie saw previously.

Public or Private, the science is the same (read: not all that definitive!)

Difference is two things, going private:

  1. Much quicker to get an appointment
  2. Much longer appointment length (double or more) so you are less rushed.
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