BPPV/severe vertigo for 7 months??

[feda]

Hi,

Writing to get some advice as NHS won't help immediately and I got an appointment with ENT dr 12 months ahead (I know, crazy)

I have suffered with quite aggressive vertigo attacks since 2 months postpartum. I would wake up the whole room spinning around and my eyes would go back and forth later walking anywhere in the house I had to have help from my husband or hold the walls. I had these severe attacks a handful of times during the 7 months now and it would last for 1-3 days however I still have it on and off in a bit milder form, I have a good ear which I have to sleep on every night or I'd wake up with vertigo again.. anyone that has any advice to give? I've done the manoeuvres several times both with gp and myself but it seems to only work for a few days or weeks and then come back again. I am quite desperate at this time as I'm now 4 months pregnant and have anxiety to get this Severe vertigo again when baby is born and not be able to look after him/her properly.

I also have severe ear pain coming on and off with tiny bit of tinnitus. I have asked gp if it could be something else then BPPV as it's long lasting and intense but he was very sure it was BPPV and diagnosed me there and then.

Any advice given is highly appreciated!

Hi op, I suffer with BPPV vertigo and have done for about 15 years now. I "manage" it but it never really goes unfortunately. I've not had a really bad attack for a few years now though but I experience head spins quite a lot if I turn over in bed too quickly, lie too flat or look up quickly for example.

I manage it by avoiding all these things where I can (I prop myself up with pillows in bed, dont lie back in the dentist chair etc) and carry anti sickness tablets on me at all times. Between that I do the head exercises from YouTube (like doing the epley manoeuvre on yourself), if you Google it you should be able to find it. This works quite effectively for me.

Hope you find something that works for you, it's horrible isn't it.

You need to see a physio who specialises in balance. Can you afford to pay? I know of places based in London. The woman who helped me was £140 a session. I’m sure you can get someone cheaper.

Sounds horrific Op, I've had this for 12 years and the only thing that helped was the manoeuvres done by ENT. Can you find someone to do it privately?

I am so sorry to hear that. I really hope and pray I don't have to live with it for as long. What do the drs say? They won't help you?

At this point money isn't a issue as my health is a priority, my husband is very supportive in getting this "fixed". Does it need someone that specialises in balance and BPPV? Thank you for your reply!

Meniere’s

Wow, I'm sorry to hear that you had to live with it for so long. Yes we will look into any option possible before giving birth to see what works best. When you have gone privately to a ENT specialist is manoeuvres the only thing they will offer? I read that surgery could be an option but it's not done as often anymore.

Thank you for your reply!

I've looked into this and had conversations about it but dr is very sure it's BPPV and diagnosed me, because it's always related to head movements.

I wonder if it could actually be Menieres disease. A family member has it and the severity and length of the attacks you have are very similar. Do you ever vomit with it?

Either way, it sounds horrible and you have my sympathy. I know you shouldn't have to, but if you can afford it, I'd get a private consultation and hopefully get a definite diagnosis. Then you can come up with a treatment plan.

Cross posted.

www.hopkinsmedicine.org/health/treatment-tests-and-therapies/home-epley-maneuver

vertigodetective.com/epley-maneuver-5-reasons-why-it-does-not-work/

www.webmd.com/brain/home-remedies-vertigo

I think if you get the correct ear and do the (Epley Maneuver) exercises for that side (quite a lot of times daily, initially, to the point it gets really boring, and for some time after symptoms resolve), then you should experience significant relief from your vertigo. It then may come back, rinse and repeat. I found on one return episode I had to do the opposite side to the one that seemed indicated. It came back on and off for a while, still.

Seven months is a long time, but it sounds as if it is only a few days per episode. I would knock it hard on the head (so to speak!) with EMs, and keep it up for several days after symptoms have resolved.

I ended up paying to see a private ENT Consultant when in a similar position to you as the wait for ENT was so long and my day to day life was ruined as I was not able to stand without falling over during the frequent episodes of vertigo. GP initially said BPPV but the exercises for this made me vomit to the point I couldn't continue to do them.

The ENT consultant was really through, I looked for someone who specialised in balance disorders and he very quickly said that it was not BPPV and balance disorders often get labelled as this at first. Mine has turned out to be vestibular migraine and possibly overlapping with menieres but I'm being monitored on that for a while as i only have some signs of it. I'm on medication now which has changed my life, I saw a neuro rehab physio who specialised in balance (privately again) which has helped, and I also saw a hearing therapist (nhs) to help with managing tinnitus which was good as well.

I still get little dizzy attacks now and then but I'm able to manage it and it's usually due to tiredness or hormones. I hope you managed to get it sorted, it took about a year for me to get back to being able to function every day.

I’ve had Menieres and the diagnosis has to include all three symptoms of hearing loss, vertigo and tinnitus. It’s horrible but there’s lots of other causes for vertigo unfortunately.

Im sorry to hear that, How did you notice hearing loss? Would it come out of nowhere or progressively get worse? I've not have any hearing loss so far but vertigo very very little tinnitus at times at night and ear pain

I've done the manoeuvres several times both with gp and myself but it seems to only work for a few days or weeks and then come back again.

You really do need to do these multiple times a day for as long as it takes, and then keep doing them for some days after. My BPPV came back three times, over a time period of many months, I have now forgotten how long but probably over 6-12 months. But I did the EMs relentlessly when it began, and each time it recurred.

Dita Von Teese said in an interview recently she'd been dealing with BPPV for three years.

feda,

hearing loss was gradual over time but permanent and just in one ear, thankfully.

Any updates on your BPPV? . I had a first bout last April,( severe) after a clonk on the head. Second this week caused by turning in bed too quickly I think.
Epley manoeuvre works when you can cope with it. Not the first day or two for me- as causes terrible spinning and nausea

Pay to see an ENT and then a Neuro otologist. You probably need a hearing and ear pressure test. If you have (progessive)hearing loss at low frequencies and problems with ear pressure and tinnitus , especially in one ear you may have Menieres/Endolymphatic Hydrops. Menieres also tends to be episodic or induced by position.

As others have said you may have Vestibular Migraine/Migraine Associated Vertigo. I've had this for 27 years, misdiagnosed by ENT as Menieres for many many years as the symptoms can be very similar but was diagnosed by a Neuro - otologist a few years back when things ramped up again around perimenopause- I may have both .

Migraine Variants such VM are a "waste basket" diagnosis. You are given it after other things have been ruled out. The ENT or Neuro will check for things like tumours (with a tuning fork) and do eye tracking tests etc to rule out other things. They might ask your GP to do some blood tests and other tests to rule out POTS and MS, Fibromyalgia etc. I found ruling these things out very reassuring when I first had symptoms and my GP would not refer me.

A lot of Meniere diagnoses back in the 1990's and early 200's turned out to be MAV/VM and I think a lot of BPPV ones will also turn out to be VM/MAV. Menieres etc are treated by using Betahistaine, sometimes a diuretic and Prochlorperazine for acute attacks and/or strong antihistamines. It's usual to follow a low salt, hyper hydration diet.

With Migraine variants, treatment intially involves using a first line migraine headache med such as Propanalol, Pizotifen or nortitriptyline/amitriptyline and moving onto other meds if they don't work. There are other treatments such as botox and Occipital nerve blocks and the new CGRP injectables such as Ajovy but you need to see a consultant and have failed several meds to access those (on NHS). You may also need your ears suctioned if hardened wax is exacerbating things.

Good luck. I'm really sorry you are having to cope with this.

Thank you for all that info. Today I’m starting to feel a little better.

Have you found all of this out through your own illness or do you have a medical background/ experience of others illnesses?
it’s difficult to get a gp appointment at present here, but I’ll get on the list and see if they’ll refer me. If not I’ll go privately as you suggest .