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Finding having no diagnosis difficult.

Hello, I am new here. Looking for some insight as I am really new to all this vestibular stuff. Any advice or help would be greatly appreciated. I haven’t yet had a diagnosis, which I am finding really difficult as it seems I’m just stuck on this constant fairground ride. Everything is of course on hold at the moment due to COVID-19.

I have been in a constant state of dizziness since early December 2019. It started with waves of vertigo each day. I couldn’t understand what was going on - the floor was moving beneath my feet and I felt that I was being dragged to one side, the whole world was spinning. I ended up in A&E, who told me to do the Epley manoeuvre and said I should be ok. Weeks later I was still struggling, so I visited my GP who diagnosed viral labyrinthitis. I suffered with derealisation and ended up in the psychiatric unit at my local hospital.

I saw an ENT, who said there was no way this was labyrinthitis and that some gentle exercise would fix it. At this point, I had been walking almost all day everyday for three months. He laughed me out of the office.

I am now 5 months in and my symptoms have changed a lot. This is a list of my daily symptoms:

  • Head spinning dizziness 24/7 - the speed of this varies throughout the day
  • Head feels heavy
  • Feel like I’m bouncing up and down on a trampoline
  • When I walk, I feel like I’m being dragged to the left hand side
  • Brain fog
  • Anxiety

My doctor has prescribed me sertraline and diazepam as they believe this is anxiety based. I am very nervous about taking these and haven’t yet.

I am wondering if anyone has had a similar experience and if so, have you reached a diagnosis? Did an SSRI or benzodiazepine help with your symptoms?

My grandad, grandma, mother and sisters suffer terribly with migraines. My grandad suffers with cluster headaches. Wondering if it is vestibular migraine I’m dealing with.

I just want the spinning to stop.

Thank you

Rachel :slight_smile:

Hi Rachel,
Welcome to the site, but sorry you had to find your way to it. It is so frustrating not having a diagnosis as it dictates the options for treatment you are offered. None of us are medics so we can’t diagnose but given your family history of migraine and your symptoms they do sound a lot like those experienced by many people on here.

When the current “crisis” is abating it would be worth really pushing your GP for a referral to a neuro-otologist UK) neurotolgist (US) as they seem to be better at diagnosing and treating VM/MAV than ENT’s in my experience. Have a google for them in your area and look out for ones that mention headche/migraine/balance specialisms.

If you use the search function on the site you can search for old threads on the drugs you’ve been prescribed and your symptoms, on the wiki pages for the site there is lots of info on drugs and treatment protocols.There really are a wealth of resources.

I think diazepam can help but only as a very short term solution. There are many other potential treatments out there than having to use benzos with all the risks associated with them if used long term. I’ve read of some successes using SSRI’s for VM but I think SNRI’s such as Venlafaxine (Effexor XR) are used more often to treat VM or Tricylic’s like Amitriptyline and noritryptiline.

Did you discuss VM with your doctor? Perhaps he would be prepared to prescribe a “starter” migraine preventative like propanalol, amitriptyline or pizotifen. It can take a few months to build up and find a dose that provides some relief and some people need to try a few drugs or a combo to find the right relief. In the meantime you might want to try a version of the migraine diet, the 6C’s one (search on the site) is the easiest and the one in Heal Your Headache by David Buchholz is much more restrictive and there are lots online . It might help you identify food’s that aggravate your symptoms or decide that they don’t play a part in your migraine “load.” For me, it helps to maintain a strict sleep pattern (getting up and going to sleep at the same time everyday), keep well hydrated, lay off the alcohol and avoid flashing lights, strip lights, sun strobe, swirly carpets and crowded places . My Bridget Riley prints have all been rehomed.

All the best. Ask any questions that pop into your head.

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Hi Rachel
Sorry that you are a fellow sufferer. From what you have posted, I agree that it sounds like VM, I didn’t have a typical migraine headache with this but had all the vestibular symptoms you describe along with a pressure feeling in my head and face. I am having great success with Venlafaxine Extended Release (SNRI) and Propanolol (beta blocker). I agree with Sputnik that you should ask your GP for a migraine preventative and see how you get on. You could also mention on here where you are based and ask for recommendations of headache/migraine specialists in your area that other posters have been to. In the meantime take a look at this quick guide that was published here in Ireland for GP’s treating migraine - when you open the link you will see a PDF document, might be worth sharing with your GP.

https://www.icgp.ie/go/library/catalogue/item?spId=C8102425-1BA5-4020-857E1062873DA01C

Hope this helps
Mav

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Hi Rachel,

Hello and welcome from me. I have almost identical symptoms to you which started for me in September 2018 with two bouts of BPPV. At the time I didn’t know what was going on but because they were isolated incidents I thought nothing of it (just an off dizzy moment) and just ploughed on two months later when I had vestibular neuritis. I had severe vertigo for about a week and although that eventually lessened, it did not completely disappear. [Later down the road, I had several Epley Manoeuvres performed which apparently resolved the BPPV but I continued to have all manner of weird and wonderful sensations despite this.]

More than 12 weeks later, I was still feeling ‘off’ and had also developed pins and needles, head pressure, an increase in tinnitus and sensations that the floor was somehow moving all the time. I was convinced I had a brain tumour, MS…you name it. Subsequent tests, including an MRI, all came back normal. Whilst this was reassuring, I became incredibly anxious and depressed trying to understand what was happening to me and why I wasn’t getting any better. My GP blamed it all on ‘health anxiety’ and that just took me to a very bad place with some incredibly dark thoughts. It was finding this site in the Autumn of 2019 that literally saved me and started me on my own road to research and recovery. I have posted a fuller explanation of what happened to me in my personal diary (Allyson’s Diary - A Date with the Unexpected), which I am due to update shortly. Feel free to have a read if you haven’t already. Apologies it is a little long.

Once I’d worked out that others were suffering with similar symptoms and that it wasn’t anxiety causing my condition (rather the other way around), I saved up to see a private audiologist who diagnosed migraine associated vertigo and possible Posistent Postural Perceptual Dizziness (PPPD) which I had no idea about and had to do lots of research. I also saw an NHS neurologist (after a 50 week waiting list) who dismissed migraine associated vertigo and said it was all PPPD! When I asked him if this could be hormone related (I’m 49 and have just entered peri-menopause), he said ‘most definitely not’ (?!). [I would add here that I have personally dismissed the PPPD diagnosis purely because the majority of my symptoms do not correlate with this.]

What I have quickly learned from this experience is that there are very few health professionals out there that know the full ins and outs regarding migraine associated vertigo and the enormous impact it can have on one’s daily life. Sometimes it takes a little while to find that one person who ‘gets it’ and that, for me, was the private audiologist but they are out there and there is always hope. I appreciate the current situation has put a hold on most things for now but would echo the advice from others of pushing your GP for a neuro-otologist/neurologist once this crisis situation has ended.

In trying to help myself, I have looked at my stress levels, diet and alternative therapies as a way of moving forward. All of my situation followed huge life changing events that caused stress beyond what my body was capable of and it just so coincided with me entering peri-menopause. I don’t think diet affects me as much as other people here but I’m careful to reduce salt and caffeine where possible. I’m also very med sensitive so all I’m taking currently is 10mg of Amitriptyline which is too low a dose to do much but does ensure I sleep a bit better and I can tolerate this. I have also tried Sumatriptans which did nothing for me and actually made me feel quite unwell. Medication is a bit of trial and error but most people find something that helps. Hopefully when you get to see a neuro-otologist they will be able to advise. My alternative therapy of personal choice is acupuncture. I was halfway through a second block of several sessions, which I definitely believe has helped with the head pressure, before that got cancelled due to Covid-19. I’m hoping to resume these as soon as restrictions safely allow.

Some 16 months later, I still have daily baseline symptoms and a ramping up of those symptoms at certain times in the month. This pretty much leads me to believe one of my triggers is definitely hormone based. Others triggers for me are seasonal allergies, stress and lack of sleep. Keeping a diary and working out what your triggers are is a good first step. I have also been continually researching the various aspects of migraine associated vertigo and also spontaneous Mal de Debarkement Syndrome which, in my case, I strongly suspect I have a bit of both - working and feeding on each other. The latter syndrome fits in with my fluctuating hormones as well as feeling better with exposure to movement when the majority of my symptoms take a back seat (pun intended)!. This is just purely my own theories but I am 95% confident now about what is going on and I’m still working on how best to tackle it. I admit to continously suffering anxiety and having many an ‘off’ day in terms of symptoms and my own mental health but I’m learning now to surf the waves rather than getting drowned by them. Gaining confidence and knowledge about what is going on has been a game changer and having so much support and advice from people here on this site has been the icing on the cake!

Hang on in there and believe you will find a way through - because you will!

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Hi Rachel,

You have very similar symptoms to a lot of people on here with vestibular migraine. Heaviness in head, trampoline, brain fog and anxiety are all very common and I’ve had them. I don’t have headaches, I have head “pressure”. It took me a whole year bouncing around doctors/psychiatrists until I even heard about vestibular migraine. I was put on Paxil (SSRI) first and it didn’t help, probably made things worse in my case.

If your medical options are limited, I would simply ask your current doctor to try Amitriptyline instead Sertraline/Diazepam. Lots of people on here (including me) are on Amitriptyline for vestibular migraine and I can say it does help with anxiety, sleep and migraines. It can take several months to get feel better on it though, so hang in there and good luck,

Erik

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Something I myself said many times and also the reason I was misdiagnosed for many years until a migraine specialist wrote I my medical report

‘these episodes with a heavy head, photophobia, phonophobia are all probably migraine equivalent’

The head pressure and imbalance/dizziness are inextricably linked. For success we have to get rid of it. Helen

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Rachel, I too was laughed out of an ENT office and told it would go away, but it never did. Don’t listen to idiots like that.

Psychiatric problem? I had a full day of psychiatric evaluation at the Mayo Clinic and they said I was not even depressed, but still gave me anti-depressants, which worked when you find the right one (it is kind of like trying different flavors of ice cream till you get one you like). The use of anti-depressants is not a stigma, they are trying to bomb the brain with dopamine so it can repair itself.

Don’t listen to these people. Take the anti-depressant and the Benzo and see if it helps (it may take a few weeks to start working).

I am sorry for all you have been through, it is brutal to be misunderstood. But your story is familiar and you should take solace in that.

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Sorry for the delay in my response. Thank you so much for this. I had an appointment with neurology yesterday and he said based on my symptoms and history, he wants to treat me for VM. He’s given me amitriptyline to try first. Hope I get some relief from it.

I have bought the heal your headache book and will take a look into the diet.

Thanks again for all of information you’ve given here, I really appreciate it :slight_smile:

Thank you! I had an appointment by phone with neuroglogy and he said based on my symptoms and history, it sounds like VM. He’s prescribed me Amitriptyline to try. I get nervous about medication, as I don’t want to have to rely on it or have any bad effects if I try to come off of it. But I’m going to have to give it a go at this point.

Does Amitriptyline help with the vertigo and dizziness for you at all? That is my main problem at the moment. My head is constantly spinning and I just want it to slow down so I can at least go back to a bit of normality. I am bed bound at the moment.

Thanks :slight_smile:

I was very nervous to try ANY medications for a long time, in hindsight I wish I would have tried them earlier. Keep in mind that Amitriptyline may not work for you and you might want to switch to another. I am on my 4th/5th medication (Amitryptline + Emgality), so you can see it can take some time to find the right drugs or combo of treatments. So try not to get discouraged.

Amitryptyline does help with dizziness on average over time, you might notice improvements from a few days to a couple weeks on it, but honestly the biggest improvements will likely be between 3-6 months from now.

I suggest you start at 10mg just to get your body used to it, and then move up to 20mg or whatever therapeutic dose your Neurologist is recommending. Many times people start at a dose that is too high for them and then give up on the medication entirely. So be mindful of how you are feeling and if you feel the dose is too high or the doctor is having you increase too fast, back off for a bit and go slower.

Hope this helps, I know most of is on here would rather NOT take medication, at least that’s what I felt for a long time. But if you have chronic VM, I think its a very wise decision to try medications.

Good luck, keep us posted on your treatment progress!

Erik

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Hello everyone,

I just had my first private appointment with Dr Surenthiran. He was amazing. I had to have a telephone appointment as I am too unwell to travel, so I was a bit nervous that he wouldn’t be able to help but he did! I am so grateful for this forum and everyone here as I wouldn’t have known about him.

He diagnosed MAV and has given me a treatment plan of diet, supplements and medication.

You may have seen that I am extremely fearful of medication in my previous posts. I discussed this with Dr S and he reassured me. I feel a lot more confident about it now that I have a diagnosis. He is starting me on nortriptyline :slight_smile:

Anyway I just wanted to say thank you to everyone here and mark this as a fresh start to my healing. Time to start getting better. I know it will take time and may not be easy but feeling more hopeful. :slight_smile:

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One main advantage of Dr S as far as I can see is he does tend to stay with people by ‘seeing them’
(if only metaphorically in the current Covid crisis) throughout their MAV journey. That might just give you the added confidence you need to overcome your medication fears. I so hope so. As you say now is a ‘fresh start’. So how about further mark that small milestone by opening yourself up a Personal Diary. @turnitaround has set up a summary in the template so that you can quickly and easily lot your journey from the very beginning. Quite a recent innovation this makes it easier for others who might want to follow it in future. Just a suggestion. Helen

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Hi! I’ve seen a lot of good things about Dr Surenthiran, how did you get in touch with him? I can’t seem to find a number though Google.

Good luck on the nortriptyline!

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@Jaz rather than risk going off Topic, have you seen this? Please follow up there:

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