Does anyone wake with these symptoms?


I’m new to this forum, was diagnosed 6 months ago with VM by a Dr Seemungal. I’ve tried propanonal and topiramate with no symptom relief, so come off them now. I’m due to visit Prof Luxton’s clinic (Queen Sq,London) for a ‘second opinion’ and I’m doubting if I do in fact have MV.

It sounds from other posts on here like noone else suffers from chronic daily headaches?

I’d be really grateful to know if anyone else gets these symptoms instantly on waking up every day:

  • chronic headache (which is always in my forehead but also elsewhere and isn’t just in one location and seems to move around the head)
  • pain behind the eyes (like bad eye strain)
  • a sudden falling/flipping over/spin sensation which makes me feel sick in the pit of my stomach
  • flu/virus type symptoms.

I suffer badly every day and can’t get up until about midday when its more bearable.

I suffer from symptoms during the day too - bad headache, dizziness/motion issues - feel drunk, blurred vision (had to increase my glasses prescription just to see clearly) and reading makes me feel sick. But most days symptoms ease a fair bit as the day goes on (and it gets dark!) but then reset again the next morning.

No painkillers help so gave up using them months ago.

Does this ring bells with anyone else?
Why would I wake up and instantly get it?
Is it something about lying down?

I’ve just lost my job because I can’t work and have been mostly housebound. All pretty grim.

Hard to explain the type of spins and dizzy feeling too - its not the room that spins, it’s me, and its more like a sudden flip or fall sensation on waking and the dizzy all day long is more like motion sickness and due to my vision - nothing looks ‘solid’ or quite real…

Anyway, be really keen to hear from anyone esp. if you get headaches on waking and if anyone has any experience with Prof Luxton’s clinic and the best way to explain symptoms in the few minutes I’m presuming I get with the consultant I’d be so grateful. Am feeling so desperate with this.

If it is MV then my GP has said I can choose which drug to try next so which do I pick…

Thanks in advance!


Hi Vix,

first off, really sorry you are struggling with all this. Have faith that you will get better.

I can’t tell you whether you have VM or not, but I can tell you that the sx you described have been reported by many people on this forum - possibly all within the same person, but certainly all of them across different people. Did you have an MRI of your brain? Blood tests? Lyme test?

Did you cut out all possible migraine trigger foods? Did you read the book "heal your headache by Dr. Buchholz?
To answer some of your questions:

at the beginning of this, I did have chronic daily headaches, all day, every day, but especially under fluorescent lights. When I go through a rough patch, they come back again but for the most part are under control. The eye pain that came with it was almost unbearable, esp. behind my left eye, to the extent that I was afraid some blood vessel etc. was about to burst behind it. That also correlates with my headaches and is mostly better now.

When I am “triggered” (by skipping dinner or having a trigger food the day before and especially when I am trying a new drug for VM that ends up only making my sx worse), I feel the headache moving around my head and getting heavy about 5 a.m., before I officially “wake up” if you know what I mean.

I did have flipping/my brain somersaulting/falling into the ground/being pulled back sensations at the beginning and they tend to resurface when I am really bad.

A lot of members said they are the worst in the a.m. and get better as the day goes on (while some said the opposite), so that can certainly fall within the wonderful world of VM.

I suggest you read as many of the entries here as possible - there is a search feature, so you can use that to look for any specific keyword or sx you are interested in.

Remember that most people do get better, they don’t stay around to say that, so take heart :smile:

I hope your appointment goes well.


Hi @Fussyfussy (Asli)

Thank you so much for your response, I’m really very grateful.

To answer your questions: I’ve had an MRI - all normal. Blood tests - just the normal basics - all normal. Lyme test - no, but I will ask my GP for it, so thanks.

I haven’t cut out trigger food yet as only just read about it in the ‘heal your headache’ book which I recently got and have started reading.
Think I’m going to have to do lots of research before I start that to make sure I’ve got it set up right before I do as it seems like there is contradictory info about what to cut and not i.e. all cheese or just some… so any pointers on getting info/definitive list for that is VERY welcome!
I’m vegetarian and the book gives mostly meat recipes.
You say you have a problem when you have a trigger food the day before. Is that normally how it works? 24hrs later?
How do you recognise you’ve been triggered vs. just normal everyday badness? Got a feeling I’m going to find it hard to recognise what’s a trigger and not, given no clear pattern to when I feel any better and not.
Stress and having to think hard are certainly triggers - about the only ones I’ve identified so far! They have an instant effect on me though, not delayed.

I will do as you suggest and read lots more posts. I’ve read quite a few but as you say there is tons on here!

I read in one of your other posts you are on Nort. I was thinking I might ask to try that next. Any advice for/against? I heard Ami can cause headaches (what’s the point then!) Is Nort. the same? Is it a tough one? I’ve just got off Topirimate after 3 months of very slow tapering up - it was really hard going for me at every step up and I only got to 75mg as the side effects turned so awful I couldn’t cope with those plus sx. So glad I’m coming off it now. Tapering down, I’m now on 15mg and will stop completely this week. Man I feel so much better without it (despite the illness sx remaining and being horrid!)

Thanks again so much. Great there are people like you out there to help us newbies to this and a community to support each other.


Hi Vix,

Nort has been the easiest med to take for me, I went up very slowly and couldn’t go up to a therapeutic dose, unfortunately, since it gave me bad headaches at 60 mg, so my max has been 50 mg. - no side effects besides dry mouth and decreased GI motility.

How do I know normal bad vs triggered bad? I “think” - and I’ve been ill every day for 13 months now and am not better yet and trying to figure this out myself, so take what I say with a grain of salt- that when I am triggered ( except by lack of sleep, stress, fluorescent lights etc) I wake up around 5 a.m. eith “waves” or rushes/ flipping sensations in my body and my head doesn’t feel right, it’s swimmy. I know it’ll be extra bad then, and it always is. Whereas if it’s the sleep, light etc type of non-ingested triggers, then I’m overall worse with my sx during the day even if I wake up as usual without the head and body sensations.

Finally, do the food triggers kick in within 24 hrs? I’m not really sure. Different ppl say different things, so it varies by people. I’ve read anywhere from a few minutes to up to 72 hrs in the literature. I usually focus on what I had within the last 24 hrs.

Don’t know if it makes sense to you.
Hope you’re doing OK.

Hi Asli,

Thanks so much for getting back. That’s really helpful. Sorry to hear you’ve had this every day for 13 months. I’m only on 6 months and having it every day is so exhausting can’t bear to think what 13 months with no relief must be like.

Sorry to hear also you haven’t been able to get up to a therapeutic dose on Nort.
What mg is therapeutic?
Does that mean you’ll quit it then if not able to help? Or is it helping some?
Sorry got confused as you said it was the easiest drug for you but you then say you had headache side effects and is not therapeutic. So is it useful or not for you?

I had the same problem with Topiramate. Over 3 months of trialling it and putting up with horrible side effects I decided I had to quit and had no relief at all. I too couldn’t get up to the ‘magic number’ dose.

Sounds like it’s a tough job to figure out these triggers…

What’s decreased GI motility in practice? Upset stomach?

Thanks again. Hope you’re doing ok also. Take care.

Hi Vix,

" Sorry got confused as you said it was the easiest drug for you but you then say you had headache side effects and is not therapeutic. So is it useful or not for you?"

What I mean is that it has been easy enough that I was able to titrate it up from a starting dose of 10 mg to 50 mg with essentially no exacerbation of symptoms during the titrations, and I tolerated it very well - no horrible side effects (just dry mouth and lowered GI motility (which means constipation)). It has helped me but not 100% - so, I have tried to up the dose to 60 mg, but got horrid headaches, so head to go back down, so I still am not well enough to fully function and need another med to help with the light sensitivity and being triggered easily by foods, etc.

So I couldn’t go up to the full therapeutic dose and am still unwell, however, better than when I started the Nort. Plus, up to 50 mg, I had no issues tolerating it (unlike EVERY single other med that I tried and had to drop due to horrible side effects).

I don’t know if this makes sense to you.


Hi fussyfussy

Hope you do to mind me jumping in on this thread… Would u consider going up to 55mgs ie split a 10mg tablet in two and take it with ur 50 mg tablet and see if that would help you increase your dose but refuse the side effects??? Just a thought x

Hi Woody,

thanks for caring and sharing :slight_smile: . Yes, I am considering it - I went up only in increments of 5 mg before, not 10, so I might need to try your suggestion.

I am trialling Pizotifen right now and the headache and dizziness it gives me is getting worse by the day - once this trial is concluded, (with failure, I am afraid) I’ll go back to focusing on the Nort. again.

Thanks again and I hope you are doing well yourself :wink:

Hi fussyfussy
Sorry to hear you are not getting on well with pizotifen… That’s one I haven’t tried so can’t advise u about that…
I’m currently on 25mgs of nort and thankfully doing ok… The only side effects I’ve noticed are a dry mouth, some constipation and I’m a little more tired in the morning but these are mild… The off balance feeling has reduced a little and so has the daily headache so I will continue to increase and hope for the best…!
I’m trying to change my diet too but finding things hard in respect of figuring out what’s allowed and what’s not…! Do u know is there any easy way of figuring out what MSG is in under all it’s different names? I’m finding that d hardest part!

Hi Woody,

Regarding the MSG, I haven’t found any “easy” way to figure it out. Have you seen the list in the “Heal Your Headache” book? He lists protein isolates, protein-fortified items, any thing that starts with malt - or malted, yeast extracts, anything “hydrolized” (not hydrogenated) , enzyme-modified items, carrageenan, seaweed extract, broth, stock or bouillon, anything that has the word “caseinate”, glutamic acid and natural flavors/flavorings.

I guess you can say one hint for me is to see the words: natural flavorings/flavors in mostly salty (not sweet) items.

Frankly, anything packaged is suspect. It is VERY hard in our fast-paced world, but the more whole and unprocessed foods you eat, the better - the closer to its source, the better, type of stuff.

I hope you continue to improve :smiley:


Thanks Asli. That makes perfect sense, really appreciate it.

One last question (sorry) how quickly did you go up on Nort? Did you say 5 mg increments, weekly?

Thanks, will leave you alone now!

Woody’s suggestion of trying to add 5mg is a good one. Good luck and thanks so much again.


Hi Vix,

no problem at all - I am happy to help as much as I can.

Well, I actually went up the Nort in increments of 5 mg. every four weeks - yup, weeks! I wanted to make it as easy on my brain as possible to deal with the changes plus, I wanted to give each dose a chance to “work” so I could stay on the lowest dose possible. So it took me from Feb 1st of this year to August to go up to 50 mg.

Then I go and try to go up to 60 mg. at once and ended up having to back down all the way to 45 mg to calm my brain!

But that’s very slow - most people go up by 10 mg at least every month.

Best wishes to you!

Except I think from 10 to 20mg, I went in 4 weeks since there is no intermediate 15 mg. dose

(20 = 2 pills x10mg, 25 as one 25mg pill, 30= 3pills x10, 35 = 1 10 mg pill + 1 25mg pill), etc… but no way to do so for 15 mg.

Wow, that was slow. Thanks for letting me know. I thought people went quicker.

I went so slow on topiramate too and then had to quit just as I got to 75mg I.e. a therapeutic dose so it was months wasted. Sounds like Nort can have some benefit at lower doses too though (not the case with topiramate so you spend months on doses which you know are doing nothing) so slower might be easier with Nort if you get some benefits at least.
It’s willpower to stop yourself going to fast I think!

Thanks again, take care.

Hi vix
My plan and prescribed titrated dose of nort is 10 mgs x 4weeks then 25mgs x 4 weeks then 50 mgs x 4weeks…! I am only on my 1st week at 25mgs and tolerating it fine so far thankfully but I have to say I was a bit concerned that the jump in doses was a bit too much…!!!

Thanks Woody, that’s really useful to hear. No side effects at all yet? Any benefit?

Does sound like fast increases compared to what other people have said but as long as you don’t feel rotten as you go up that’s what matter I guess.


Hi vix, the only side effects I’ve noticed are a dry mouth and bit of constipation and I’m a bit more tired in the morning time but these are all very mild to be honest…nothing I can’t handle…!
Benefit wise it has made me less off balance at times but I’m still off balance and dizzy most of the time… It has also reduced the headaches and pressure in my head but there is still a headache there all the time… So I suppose u could say it had taken thongs down a notch but I need to keep increasing to 50 mgs…!
I should day I’m also on topamax 100mgs twice daily but I have been on that for over a year and it never helped!

Hi Vix,

My vertigo symptoms are definitely on a schedule, and it matches yours pretty much. It’s at its worst until noon or a bit after, then it tapers off until it is generally gone by 5 pm. When my symptoms used to be more dramatic, I could actually set a clock by them. Just before 5 pm, my stomach would start to growl (it was empty after throwing up/not eating all day), and then I’d be really hungry after that, as if I had never felt queasy. My symptoms are completely triggered by food–it’s like a morning-after hangover in many ways. The problem is, now that I’ve gotten older, it’s almost all food–but it used to be only a few foods. Like you, I can get a headache with the vertigo, but only under certain hormonal conditions: right around the time of my period, at ovulation, and during some months when my hormones are a bit haywire. I also got headaches in my second trimester of pregnancy–but in all these cases, it was only when I ate the trigger foods. Many supplements and medicines trigger the vertigo as well–even certain eyedrops at the eye dr.