Suggestions wanted PLEASE

I am posting this here in the hope that someone will be able to help explain, offer suggestions or just give any ideas or theories as to what this might be and what to do.

I know the obvious answer is to ask the doctor but…

My neurologist doesn’t seem to know about ear related side effects. The ENT consultant didn’t seem very interested and my GP didn’t seem to know. So I am not sure if mentioning the latest development will get me anywhere.

I started a new medication two days ago (Ethosuximide) and I am already going to give it a miss tonight. The reason is that it has really exacerbated the slight facial numbness I had and caused my ears to hurt again. My face (on the left side) feels like I have been to the dentist and the injection is just starting to wear off. My ears feel slightly numb, pressured and they hurt.

I have had this before with the ears, but the numbness possibly started with Zonisamide, increased with Amitriptyline and is now worse than ever. Surely this has to be something to do with a nerve/nerves. Has anybody ever had (or heard of) anything like this from medication?

I cannot believe this problem is so unique that no one else has ever had it or heard of it. I need to know if this is serious or not, and if I am damaging nerves by persevering with medication that makes this happen.

Any suggestions, ideas, advice, theories, experiences, anything at all? Thanks in advance.

I had the face pain and jaw problems for a while but nortriptyline and propranolol sorted that out after a while!

I can relate to the doctors not being on the same page problem for sure! I’m not a fan of anything that causes numbness…especially facial numbness. That is usually caused by nerves, which would make me think the medicine is possibly having an unwanted effect on your nerves. I’m not a doctor though, but I really think most of our issues are nerve related anyway. Sorry…I’m not much help. :confused:

I’m with Mgstegner on this…certainty sounds like something affecting the nerves! My aversion to meds is no secret, but I would certainly want answers from the doctors on this.
I don’t know what the drugs you mention are, but maybe they are meant to calm the errant signals that our brains transmit, and as a side effect are acting like a dental anesthetic?? Whatever, I would want a medical explanation from the prescribing doctor. Have you read the inserts with the meds to see if they mention this kind of side effect?
Hope it soon rights itself.

Those are actually some of my mav symptoms,maybe your mav is changing and throwing in new symptoms?? X

mgstegner Thank you for replying. That makes sense to me, I just hope it is temporary.This isn’t the first time this has happened, but it is by far the worst. I am concerned that there may be some cumulative nerve damage which has just been made much worse by yet another med. I only took two small doses, the second was half of what the first was yet got this reaction.

Hi danni. Thanks for replying. Yes I have seen people mention symptoms like that for MAV. With me this ear thing and now the numbness/tingling always coincides with medication though. I have more health issues now than before I started medication for this. :unamused:

Hi mazzy, thanks. Ethosuximide is an anticonvulsant. It isn’t even a recognised MAV medication. But thinking my problems were due to ototoxicity, I asked my doctor for what Neil Bauman (Ototoxic Drugs Exposed) has listed as the least ototoxic anticonvulsant. Now I am thinking perhaps it has been a nerve issue all along, or at least in part.

I rang my GP and he said it should wear off in 48 hours. I took the last dose Monday night so it hasn’t, though it is slightly better than this morning. I have just been looking at a drug interaction site and it seems that every drug I have had a problem with is listed as a Central Nervous System drug. The only med I actually tolerated was Propranalol which isn’t listed as such. I have realised I just don’t know enough after all to be picking my own medications.

Numbness isn’t listed with ethosuximide in the pack but I think anticonvulsants do have parasthesia and hypesthesia listed as possible SE’s, at least some do. As long as it wears off I don’t care, but since it never properly went before I am concerned about what will happen now.

Hi mellybob. Thanks for replying. I think meds have actually caused my problem but I have heard others say, like you, that they have this as part of MAV. I am going to go back to just propranolol I think, at least until this settles. Does this numbness sound like something I could ring the neurologist secretary about do you think? My GP just said it should wear off in 48 hours but it hasn’t.

my opinion is ring the neurologist and see what they say even if its just to settle your mind, I really feel for you sarah as ive been where you are and it was a hell hole to climb out of but I DID IT, I promise you will get a lot better than you are but unfortunately you might need the meds to push you through I was very lucky my first trial worked but I was really bad at the beginning I had every symptom that there is including nose bleeds etc etc BUT 2 years later I was living it up in Ibiza which I never thought would have been possible,hang in there!!

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Thanks for replying. To be honest I am not even completely sure about my diagnosis at the moment. I have had a few dizzy episodes this week but they haven’t lasted hours like some have. Apart from that I have been ok except for the numbness and tingling caused by medication. I have been at work and able to do each shift.

I have had bad reactions to so many medications that I am not even sure what is going on anymore. I was so sure it was ototoxicity because of all the ear symptoms but now I wonder if the central nervous system drugs affected nerves and that has been the main problem.

I have had a tingly type feeling in my lower legs, (and a bit in my ears today!) as well and I just think my nerves are upset! A couple of weeks ago (I think it was) I was lying in bed and I thought there is no way I can sleep because it feels like there is electricity going round my body, and my left cheek as well, that is nerves again I think, and feeling restless at times. Also feeling like I am going into a cold sweat but not actually sweating sometimes as well.

The facial numbness and tingling is still there but slightly less. My GP wouldn’t give me anything else new which Is completely fair enough so I am going to go back to Propranolol (built up slowly) until I can see the neurologist again.

I haven’t ever had a nosebleed, I didn’t know that was an MAV symptom. I am glad to hear about your improvement and I hope it continues.

Hello Sarah356,

I have facial numbness as a symptom of MAV. What helps me most with that is Botox. I receive injections about every 12 weeks as well as taking Propranolol daily. I was to see my Neurologist today and he is switching me to Candesartan from the Propranolol which I’m hoping will lessen the amount I sleep and this flat feeling I have on the Propranolol. With regards to the numbness being a symptom of MAV, it starts to creep up on me again about a week before I’m due for another injection as well as other symptoms (feeling of a fishbowl for a head, depth perception skewed, nausea, vertigo etc). I had vestibular neuritis a couple of months ago and it has left me with an intermittent ear ache on the left side and ringing on the right. This is my third time in 7 years of having the vestibular neuritis but didn’t really have ear issues before then other than some ear pressure. I have no doubt that mine is MAV but believe there are other vestibular issues contributing to it. I read a very interesting book this past week by Sue Hickey “Finding Balance” I found it very helpful as she was able to articulate the symptoms - rather than “dizzy or vertigo”. It is available on Amazon and I highly recommend it. I hope this helps.

Hi Tinner. Thanks for your reply and the reading suggestion. Can I ask do you have tingling as well as facial numbness? And does it affect your ears too? It is my left side that is affected most. The numbness and tingling is on that side and it is my left ear that has the slight fullness (that began with Topiramate) and now gets worse with most medication, but it is the right ear that seemed to get the most pain (before anyway).

I didn’t even know what vestibular neuritis was until a minute ago when I googled it. If you are left with intermittent earache and ringing from it, what symptoms do you get when you actually have it? I am interested because I think my ear problem is to do with nerves and I am still trying to understand why I get this, and how medications can cause it. Also, is there any separate treatment for it or is it covered by the MAV meds?

I would be interested to know how the Candesartan works for you compared to Propranaolol. I am back on Propranolol and I do know what you mean about feeling flat. Do you get very vivid and boring dreams with it? I do, like I am doing everyday things in real time instead of flitting from one crazy thing to another like most dreams!

Yes, tingling and numbness, mostly around my eyes but can spread to around my mouth. No numbness in my ears, just a intermittent pain/ache on my left since the neuritis. My right ear rings on and off but getting better as I get better from the neuritis. When I have vestibular neuritis it comes on strong, vertigo, floor feels uneven, nausea, vision gets really messed up, cannot handle any noise or light and my blood pressure took a huge dive. In bed, flat out. The doctor put me on a short round of steroids this time to help. I was like that for about 10 days, then gradually I could get up for a bit at a time. It’s been 6 weeks now and just starting to return to normal (my normal anyway) - can get through most days without a nap, can tolerate some noise.
I have fullness in my ears when I have a migraine, almost like a pressure? It sometimes can be my warning sign, that and the tingling in my face…know the vertigo and spins are just around the corner. So hard to articulate the symptoms of a vestibular migraine. I believe there is something that sets off the facial nerves with a vestibular migraine. The vestibular nerve controls our balance, hence the spins and vertigo. There is also the trigeminal nerve in the face which may be causing you issues maybe?
About the Propranolol and dreams? I’ve always been a vivid dreamer and still am. The Propranolol hasn’t changed that. The pharmacist was so excited to see I was getting a medication change as she told me she sees many patients on a beta blocker who feel “flat”. Neurologist assured me I would find the Candesartan as effective with the migraines, but without the flatness I am feeling. Looking forward to getting my heart rate up again!

Have you tried an ear, nose and throat specialist? Have any tests been run on you?

I have the face pain from the top of my head through my right eye, cheek, teeth. I read that it’s the MAV affecting the trigeminal nerve in the face, it’s often the first part of the migraine aura to start showing for me. My Dr has just recommended a diuretic as this is thought to be connected to migraine caused swelling that pinches the nerve . I’ll try it next time around My chiropractor is actually very helpful in relieving the associated muscle tension headaches and neck pain

Thanks for being so detailed in your reply. The vestibular neuritis sounds horrible, I am sorry to hear that you get that. The numbness and tingling I get is in my cheek, lips and around the ear area. It seems linked to medication use so I can only conclude that something in the central nervous system medications irritates my nerves in some way. That may not be it but it is the best I can come up with. I would so like to be able to talk to a medical professional about what happens and for them to listen and actively try to find out exactly what is going on and offer a solution/suggestion but they are not interested enough.

I spent ages thinking the ear related reactions I kept getting were ototoxicity, I read up on it, I even emailed Neil Bauman several times (and he was far more helpful than the ENT doctors) for help and bought his ebook. I researched ototoxicity myself to get to the bottom of it because the ENT consultant didn’t seem interested enough to investigate what was happening. OK I may have been wrong (at least in part) but I tried.

I have seen ENT consultants. I had a videonystagmography which apparently showed a mixture of BPPV and a central cause. I have had 2 MRI’s, I have something which I think was called an unspecified finding but the first neurologist said it wouldn’t be the cause of dizziness. I have had several hearing tests which showed that my hearing was still within normal range.

I did something called the Unterberger test (which involves me marching on the spot with my eyes shut for a minute) 3 times. The first time I had turned 90 degrees to the left and walked to the side of the room. The second (while I was on Topiramate) was better and the third was ok.

I completely agree that it is hard to articulate the symptoms. I struggle with this too and often end up getting in a state at appointments because I can’t explain it properly to the doctors. The problem too is that I want to say so much but I don’t know where to start.

How are you getting on with your new medication?

Hi dizzylizzy2. That is interesting. Swelling that pinches the nerve? I wonder if that could happen with the nerves that I seem to be having trouble with. If medication irritates the nerve then could there be swelling? Sorry if I sound a bit stupid but I don’t actually know about this.

Everyone I have had responses from about facial numbness and ear issues have all said it is part of their MAV. But I am sure mine at least has a link to meds. thanks for your reply. I would be interested to hear if you think the diuretic makes a difference.

Your journey of tests sounds so familiar. The first neurologist I dealt with said there was nothing he could do for me. I was then sent to an otology-Neurologist and he diagnosed the MAV. Since then I see a . I have been lucky to have a wonderful General Practitioner who referred me to some great specialists. I’m learning to accept this illness is far from cut and dry and trying my best to live with it and not aggravate it. That means limited stress, healthy eating and lots of rest. I miss my days on not having to worry or plan how I will be feeling and whether I can commit to certain things. Meditation has been helpful. I’m waiting to start the Candesartan next week as I have Botox scheduled for Wednesday and want to do one thing at a time. If I make more than one change at a time, I’m not sure what helped! I try and keep a journal of symptoms, drugs, activity, sleep etc.

I found this link about ototoxicity for you. I’m sure you’ve read it. Read that book I recommended if you get a chance, she has pointers as to how to track and prepare for doctor’s appointments.

Hi there. Thanks. To be honest I am not sure if I have read that specific link. I probably did lol. I spent hours reading about it all, as I was sure it was the reason for my consistent bad ear reactions to meds. As I think I said I wrote to Neil Bauman (Ototoxic Drugs Exposed author) who seems like a nice man who tried his best to help and offer advice, and I spent my week of annual leave reading his book. I even wrote to my ENT consultant quoting Neil and requested a more thorough hearing test.

It is only when I found that Pizotifen and St Johns Wort (which is not meant to be ototoxic at all) caused the same reaction that I realised something else must be going on too. This was confirmed by Ethosuximide which caused facial numbness and tingling, that affected my ears. I asked my GP for Ethosuximide because in Neil’s book it was listed as a class 1 risk (very low) but the tingling also affected my ears.

I now think it is my nerves that are affected.

I see your point about making one change at a time or it won’t be clear what it is that helped. I did keep a written record for about a month, it is really tedious isn’t it.

I could do with some help with being coherent (never mind prepared) for appointments.:slight_smile: That is only a slight exaggeration. Thanks for the recommendation.