Another diagnosis...and even more confusion

[Allyson]

Hi all,

So after several months of waiting, I finally went to see a neurologist last Friday and described to him my history of how this all started for me last November with vestibular neuritis. As I explained to him, I have numerous symptoms that could quite conceivably cross with a multitude of conditions (BPPV, MAV, PPPD) and listed the following things that are really causing an issue for me, these being:-

24/7 feelings of dizziness and vertigo (spongy floor feeling, rocking sensations included)
tinnitus - high frequency and constant in both ears
ear pain - sharp stabbling pains in the ear, pressure drop sensations (i.e. hearing briefly cuts out)
visual intolerance - mainly to the computer, TV (on occasions), busy visual environments
head pressure - never painful but above the ears and on both sides of the head
pins and needles in legs and sometimes down the side of my face, numbness in arms
vertigo as soon as I go to sleep (like trying to lie down and sleep on a flying carpet!)
increased anxiety, panic attacks, palpitations and chronic stress

I also told him that I’d had a normal MRI scan and that I’d been to see an audiologist who, after carrying out a series of tests, concluded that my hearing was normal but calorics showed abnormally high responses in both ears. Apparently this ‘hyperactivity’ is deemed consistent, although not strictly diagnostic, of migraine-associated dizziness. [At the time this made a lot of sense given some of the additional symptoms like head pressure, ear pain, etc. accompanying my 24/7 dizziness and vertigo, which is my main problem.]

Having explained all of this and then been put through a series of neurological tests (thankfully all ok), the neurologist put ALL of my symptoms purely down to PPPD. So this immediately confused me because I have read and researched quite a bit about PPPD and symptoms such as head pressure, pins and needles, vertigo and ear pain don’t appear to be listed. Rather PPPD appears to have much more interaction as regards visual intolerance (the only bit that I fit into) and non-vertiginous dizziness, if I understand correctly. More worryingly, I have seen a couple of articles where PPPD has almost been referenced as a category that you get put into when doctors accept you have a dizzy problem but don’t actually know what’s wrong. Has anyone else heard this? I questioned what the neurologist said and also added into the mix my age (I’m 48) and that I believed hormone fluctuations were at play (I understand this is another possible driving force behind MAV)…but he still didn’t buy it. Medication wise, he has increased my Ami dose from 10mg to 20mg and then to raise it again to 30mg after two weeks. Apparently this is a good med for PPPD.

At the risk of rambling on, I’ll cut straight to the chase and say I’ve reached a crossroads. Do I just accept that I have these weird and random symptoms or do I plough on and continue to seek an answer to the confusion and what is behind my own particular set of circumstances? I’m always tending to the latter because I guess my anxious brain wants some kind of closure by having an answer. With it, I’ve got a chance to heal but without it, I’ve just got health anxiety chasing me down and ruining my life. Each new sensation of vertigo just ramps up the stress and keeps me stuck in fight or flight. I’m basically going round in circles and have definitely hit an all time low. I’m no longer enjoying life or having fun but then I look at my husband and my son and realise they are the reason I keep going. It must be awful for them having a wife and mum that up until a year ago was happy and the life and soul of the party and has now been reduced to a quivering wreck that fears each and every moment. I think as I’ve said before, I hardly know myself these days.

I desperately do need some kind of counselling with regards to vestibular related anxiety but don’t even know where to turn. The neurologist I saw last week agreed but could not think of anywhere in the UK that could offer vestibular help specifically. Again, if anyone has any ideas I would be incredibly grateful. I’ve yet to find anything through research on the internet but perhaps I’m not looking in the right place.

Apologies this is so long but life is a real struggle. I spend many a day in tears, trapped in a kind of stasis with no way out and that, all by itself, is very frightening. I’m praying I’ll find a way out soon.

Allyson x

[Mav]

Hi Allyson
Sorry to hear that you are a fellow sufferer but you are in good company here - you will get lots of support and plenty of good advice from the gang on here. If you read through the “wiki” section on the forum you will see that there are so many symptoms associated with the condition we all have and you will also prob know that many of us get different “names” put on our condition - be it MAV, PPPD, vestibular dysfunction, migraine variant etc however the important thing is irrespective of the NAME that’s given to your condition it is the same pool of drugs that are used to treat it. There is an excellent webpage you should look at by a Dr. Timothy Hain the top neuro in the US who is well respected for his success in treating the symptoms we have. He has a flowchart of meds for treating the symptoms and the sequence in which they can be tried.

Essentially the pool of drugs that people have success with is as follows:
Beta Blockers: eg half beta prograne extended release - these would be classed as a first line med to try. Allegedly these drugs work by smoothing blood vessels in the brain, they also help anxiety

Tricyclics Antidepressants: 2nd line meds such as Amitriptyline up to 30mg or Nortriptyline
SNRI: also classed as 2nd line meds eg Venlafaxine/Effexor extended release - highly recommended by Tim Hain for those of us that are dizzy - starting dose 37.5mg up to 225mg max dose. Wonderful for anxiety too, I am the calmest I have ever been in my 49 yrs
The drugs in these two buckets allegedly target serotonin levels in the brain

Then there are other classes of meds if the two above don’t work
Calcium channel blockers: Flunarizine or Verapamil
BP meds: Candesartan and some others I can’t think of
Anticonvulsants: Topamax - many find side effects intolerable, Gabapentin - awful drug for me, Sodium Valproate - equally awful

In my case I was treated by my GP and ENT for 3 months for supposed Vestibular Neuritis too - my symptoms were extreme and constant dizziness, ear pressure and head and face pressure. The dizziness was not a spinning dizziness it was more like a constant drunken imbalance and unsteadiness on my feet. I subsequently saw an audiologist, my VNG and caloric testing were all clear so she diagnosed PPPD. Six months later I was told by my neuro that In fact i have MAV, I was 46 at onset with no prior history and as time has gone on I know for sure it’s hormone driven. What I have come to understand is that the migraine plays havoc with the vestibular system so you have a ton of symptoms that you think are separate individual ailments but are actually all related. Believe me I almost lost my mind “trying to get to the bottom of it” - I saw an ENT, Endocrinologist, Rheumatologist, Audiologist, 3 x Neurologists, Otolaryngologist, Gynaecologist , Vestibular Rehabilitation Specialist and no doubt others along the way that I have forgotten about. I have only recently begun to get my symptoms under control after 3yrs of pure hell. In March I started on 37.5mg Venlafaxine extended release and am now at 150mg - this has been a total game changer in drastically reducing the constant dizziness and ear pressure and the anxiety is gone. Just 2 weeks ago my neuro added in 80mg extended release Half Beta Prograne to try to kill off the head and face pressure that’s still there and I am seeing further improvement. At my period I end up bad again with escalating dizziness and head pressure and so she has prescribed Frovatriptan for me to take to try to abort the migraine activity - supposedly Frova constricts the blood vessels in the brain which are causing the pain. So my current med regime is a beta blocker and an SNRI and then abortive meds at my period.

Many folks on here have had great success with Amitriptyline and I am sure they will chime in with their advice to help you through this.
There is light at the end of the tunnel, the challenge is to find a med or combo of meds that will get you symptom free. Some people are very lucky in that the first drug they try gets them to symptom free, Ami has a good track record for what we have so you are starting with a well tried one.
Hope this helps
Mav

[Allyson]

Thank you so much, that’s really helpful. I’m hoping the Ami will work - I’ve been on it a little while but at too low a dose to actually be doing anything. I think I’ve been quite scared to increase the amount because of side effects but I’ve just reached the point where I’ve got to go for it.

I’m glad you mentioned about the hormone side of things because I definitely think this is playing a part regardless of what the neurologist thought. I had two minor bouts of BPPV last summer before all of this started but nothing else. I think being peri-menopausal has increased my anxiety so this is definitely adding to it all!

Thanks again and best wishes,
Allyson x

[Mav]

I can totally relate to being scared of increasing meds because of side effects. I had a terrible experience with Gabapentin and it put me off increasing on other meds, I should have stopped it way sooner but I kept hoping I would adjust to the side effects. What has helped me with this fear is to decide at the outset how long you are prepared to try a med for and what dose you want to get to and what you deem as reasons to quit or reduce. For me I was prepared to go to 150mg Venlafaxine and no higher which is where I am at now, I am prepared to try 80mg half beta prograne for 4 weeks and if I do not have full symptom control by then I will be asking to increase from 80mg up to 120mg. 3 yrs of my life have gone by in a fog of dizziness, pain and anxiety so I am now going after this thing full throttle. My most recent neuro tells me that full symptom control, with a few exception days over the year, is attainable and so I am holding her feet to the fire on that.

[ander454]

I spend many a day in tears, trapped in a kind of stasis with no way out and that, all by itself, is very frightening.

Most of us here can relate to that, I’m almost at the 3 year mark. At 1 year I was really depressed. At year 2 I could see some hope from meds. And now at 3 years I’m between 90-100% depending on the day.

On MAV vs PPPD, many of us here probably have a combo of the two. But honestly, it doesn’t much matter, if you go to 10 more Neurologists some will say MAV, some will say PPPD, and some will just say “anxiety”. If you are tolerating 10mg of Ami, its probably a good med for you and you can just go up to 20mg. I was super scared to try Ami, but after the first week on 10mg I could tell I was tolerating it OK and we quickly went to 20mg and then 25mg which is where I’ve been for almost 10 months now.

Hang in there! You will definitely get better!

Erik

[nin]

Hi allyson,
Sorry to hear you’re having such a bad time.
I think both mav and Erics replies are spot on.
I’m 3 years into this, kicked off at 43 too so hormone linked and my neuro agreed with this.
I too am on a combination of meds which is venlafaxine and propranolol. Keep going with the ami, I understand the fear on meds… It took me 2 years to start them and only in the last 6 months I’m on a combo and I’m doing very well now.

You are on a journey with mav and quite a challenging one so just take one day at a time, it’s baby steps for sure but you will get better xx

[Onandon03]

Hi Allyson

I do feel for you. I really do. Trouble is with such conditions in the UK, and for all I know in many other countries, there’s no specialist treatment available to get us through this maze. Vestibular conditions involve so many parts of the body and senses and specialist are just that. Each deals with one individual part of the body and won’t comment outside their own sphere. Take for example the hormone link. A huge number of patients are middle-aged women. Thats more than Coincidence. The neurologist I saw most recently told me mine isn’t anything to do with hormones. Um?

PPPD. Seems an strange thing to me. I’m sure it exists as a separate entity for some coming on after some vestibular trauma but sometimes it’s borderline with MAV and hard to distinguish. Reading your post I can see why the neurologist told you it’s PPPD you have. They tend to work on keywords. It must be quite hard in one brief consultant to distinguish between PPPD and MAV which is being continuously reinforced by anxiety which is probably why if you search the internet you’ll find a condition, conveniently quute recently ‘invented’, sorry, ‘names ‘MARD’ - ‘Migraine-Anxiety Related Dizziness”. Sorry to queer the pitch but we do seem to be reaching a point where we have more pigeon holes to dive into than the average pigeon loft!

Sometimes I think it doesn’t pay to know too much. Information out there on PPPD us very varied but you seem to have obtained a fair grasp of it. From all I’ve read PPPD seems the End Game, the end result of a vestibular condition where people are left with ongoing dizziness and not too much else. With your symptoms seems to me yours is still very much present. One thing really sticks in my mind is a paper I read saying unstable migraine must be treated before treatment for PPPD is instigated so I’d say stick with the Ami. Read @naejohn’s diary and @MNEK18’s too where it’ll give you some idea of the level you may need to reach. Tell yourself the anxiety which is perfectly normal will reduce naturally in line with the decrease in symptoms once the Ami really kicks in because it will. Try talking yourself up a bit. The ‘I will beat this. I’m stronger than I can imagine’ and find some pleasant distractions along the way to make life more pleasant while you await improvement. There’s light at the end of the tunnel. It’s just you can’t see it yet. It’s around the next corner just out of sight. Helen

[Hecoso]

I desperately do need some kind of counselling with regards to vestibular related anxiety but don’t even know where to turn. The neurologist I saw last week agreed but could not think of anywhere in the UK that could offer vestibular help specifically. Again, if anyone has any ideas I would be incredibly grateful. I’ve yet to find anything through research on the internet but perhaps I’m not looking in the right place.

Hello Allyson. I am a clinical psychologist also suffering from vestibular migraine and I understand your feelings and the sensations you are describing. While you carry on with your journey (I am also traying to find new solutions and treatments) I recommend you look for a a good Acceptance and Commitment (ACT) therapist . This therapy includes mindfulness meditation and has proven to be good in pain management and other chronic conditions. Hope everything goes well , all the best .
Helena

[Allyson]

Many thanks everyone for your kind comments, encouragement and suggestions. I certainly have a lot to work on but most importantly I’m glad I’m surrounded by lovely people who completely understand and know just how much of a challenge getting through every day can be.

I’ve made the decision not to chase my tail any more in terms of any further diagnosis and to just accept things for what they are. I will now look at the therapy and medication side of things and keep you posted.

[a54321]

When it comes to anxiety, I’ve found that drinking 1 cup of Tulsi tea daily helps me some. It’s not a complete answer, but did enough that when I stopped for a while, I noticed it had made a positive difference during use. Went back to using since then. For me, it’s been a good complement to gains made with meds.

[Allyson]

Thank you very much for this. I will look into getting some.

[Onandon03]

Hi Allyson Having just read a comment you made on another thread where you referred to commencing acupuncture

Another new guy...here's my story

In the absence of any really useful help from my doctor, ENT consultant and neurologist, I have recently started acupuncture to see if it helps.

And rereading your original post in this thread I went back looking for a PD. Perhaps if you could find the time to do one somebody may just be able to spot something that may help you more. Going from the recent bits I read and your age it really sounds like MAV to me.

[Allyson]

@Onandon03 Thank you for your reply. Yes, I’ve been thinking about completing a PD for a little while now so I’ll get on to this soonest.

I agree that my age must be having an impact on my symptoms. I’ve just recently had a series of blood tests re-run and these now show my hormone levels fluctuating so further evidence I believe of me entering the (not so wonderful) world of peri-menopause. These results, together with increases of visual aura, pins and needles, head pressure and dizziness just seem to confirm the presence of MAV.

My real issue is accepting these strange symptoms (and grieving for my old life), particularly when it’s full on 24/7. After nearly 14 months, I’ve now come to realise that I have to deal with the new me for the time being and try not to get too spooked out when I’m feeling particularly rough…but it’s incredibly hard. It was my mum who both suggested and paid for me to have acupuncture because she felt so awful and powerless at seeing her daughter almost self-destruct. I think this is her way of trying to do something and she made me promise to go. As I said in the other thread, I don’t expect it to cure the MAV but was hoping a reduction in stress might help with something. I have 4 sessions left to go and feel obliged to complete the course for fear of hurting her feelings. I’m keeping an open mind but I think in my heart of hearts, I’m not really going to be a lot further forwards. The only positive is that I’m doing something whilst waiting for counselling which has almost been 12 months. I actually rang them to check I was still on the waiting list and, yep, I am…but it will most likely be Easter before I’m seen.

I’m ashamed to say that on top of the usual everyday stresses and strains we all experience from time to time, my own panicky reactions to my symptoms are just adding more and more to my bucket so I have no one else but myself to blame for feeling so overwhelmed and anxious all the time. I guess I’m just having problems breaking that cycle and was hoping that counselling, if started sooner, could have perhaps prevented it from getting out of control. So for the moment at least I shall have to consider myself a work in progress and that’s why I’m especially grateful to have found yourself and everyone else here because it has helped me so much in trying to understand this awful condition whilst knowing I’m not alone. Best Wishes.

[Jrex98]

Hello Allyson, I can relate to the “chasing your tail” and everything you wrote in this post. I have been going to Mayo clinic in the US. I have put myself in so much debt trying to find an answer and the only thing that I have learned is that I have sleep apnea. MRI, CT scan with contrast come up fine, audiology and calorics testing came back fine, with only minor hearing loss in the mid-ranges. EEG was fine, except I didn’t get through the strobe lights portion of the test - I had a panic attack as I usually do with strobe effects or flickering lights. It feels like none of it was worth it because no one is better off than we were thousands of dollars ago. Every day I am dizzy, have to limit my activities to certain tolerable ones, have horrible head pressure and shooting pains in my head. I cannot believe that there is nothing on any tests when it is so difficult to live with.

[Onandon03]

MAV doesn’t show up on any tests such as MRI etc. It is an Invisible Illness not that that makes it any less real and disruptive to life as we originally knew it. I think now might be a good time to stop chasing answers and the inevitable ‘cure’ and just try to make life as comfortable as possible by whatever means are available. I notice you are taking Verapamil. Perhaps it’s time to add in/up levels, really tighten up on those lifestyle changes And reduce those triggers. Minimise your suffering with practical measures. Chronic stuff can really get you down and will ultimately affect your mental health. What you need now is to see some progress. Everything looks negative. It isn’t really. Think of it the ither way. All those expensive tests have ruled out the nasties. Underneath you are healthy. That should be reassuring. No tumour, MS, Parkinsons just a brain that’s gone haywire owing to migraine oversensitivity that needs to calm down. It needs some peace to rest.

[nin]

Hiya allyson, just wanted to encourage you to stick with the acupuncture, I go to a session every 6 weeks and we work on my whole nervous system and balancing hormones based on where I’m at in my cycle. Has it cured me of mav… No… But its complimenting my med combo which is working in my favour and bringing me towards success albiet it slowly. Like you I’m perimopause so I’m in this for the foreseeable future. Like you my life was turned on its head but a huge part of me feels in a way its stepped into my life to slow down a crazy paced life. Didn’t feel like this for years at the start I can tell you… Went thru all the grief stages.

Keep moving forward allyson, if your mum offers you more acupuncture consider grabbing them, building up your system helps your entire body work with the meds, lifestyle, exercise etc…

One day at a time, one step at a time… Just keep moving forward… Wishing you lots of luck xx

[Allyson]

Thank you everyone for your acknowledgements and kind responses.

@nin - I completely agree when you say about MAV stepping into your life to slow it down a bit. I think this was the same for me. I’ve had four major stressors in my life over the past six years and then was hit with vestibular neuritis in Nov 2018. It was the final straw. I should have seen it coming but whilst dealing with the stressors, my life ran on autopilot and no matter how bad I felt I just carried on instead of taking time out. This also coincided with the beginning of peri-menopause and putting everything together, I’ve now got a much better picture of how my health and well-being has spiralled out of control. I’m doing my best to hang on in there though. In addition to the acupuncture, I’m starting some herbal remedies to help with the anxiety. I’ll start a personal diary shortly and then I can report back as to how I’m doing.

[Jools]

Hi Allyson, I’m 48 and although I suffered from migraines following an accident 25 years ago, symptomatically these started to change about 2 -3 years ago. The neurologist I saw very briefly agreed it was likely linked to hormonal changes. His advice was to try a different triptan and drink more water
I’m still waiting for my MRI results I had just before Christmas but Im not expecting anything to show up.

[Allyson]

Hi @Jools. Thanks for your reply. I hope your MRI tests come back okay.

[Dizzy_Yogi_Mom]

The stop, stop stop excercise in this online program helped my anxiety cycle quickly. I feel similar to you in wanting answered to be definite. My Dr prescribed this lambic system regulating program online called The Gupta Program. You can try the intro for free but I immediately bought it.