Is it even worth trying Propranlol now?

Ears, nose and throat
1

Hi all, Fellow Dizzy here. I got vertigo a few years ago, which resolved to the point of being able to work again in 4 months - I just gradually upped my activity and I felt pretty normal after 9 months (except for occasional weird tinnitus and ear pressure changes I never had before).

So in October 2014, woah massive vertigo spins again, These lasted a week and since then I have been stuck with constant imbalance, exhaustion, dropping things etc.

In around Jan 2015, my coordintaion was so bad, slurred speech etc, I got an MRI of the cerrbellum, which was clear.

So far, no-one seems to really know what's wrong. One neurologist suggested maybe MAV and put me on Amytriptiline (Elevil) which made me twice as dizzy and sick. It was like 3 weeks of hell. So I had to come off it. Now, they're suggesting I try Propranolol.

Thing is, it's all guesswork. No one has diagnosed me with anything (or no two people say the same thing). I've only had a Calorics test and the hospital that was done at is so poor, they never even gave me the results.

So currently I have 24/7 imbalance - it never goes, though it's worse if I need to concentrate, and walking outside often makes me feel I might keel over. Only occasional 'vertigo spins' now. I wake up every morning with my head feeling like a cannonball and if I do too much (like answering a few emails or trying to read or think lol) then by evening I have crushing headaches.

I can not work. My brain is so screwed I can take 2 hours to write an email sometimes (I used to write for a living). I still stumble with speech. I'm exhuasted all the time, I've tried Cawthorne Cooksey and my other half tries to take me for a walk every couple of days, as far as I can manage (sometimes 5 minutes, sometimes 20, always holding onto his arm).

I feel like I'm trying all I can but the hospitals are so slow and I feel very much alone. I've been sick nearly 10 months this time and been given only 3 appointments (and paid for a private MRI myself).

Is there even any point in trying Propranolol (which I'm told might not even work for 3 months if at all, and if I even did have MAV, which we stil don't know if I have!).

After my last ENT appointment, I asked if they'd refer me to a neuro-otologist as they seem to be much better at understanding balance problems and the ENT consultant said "but you don't need to see a neurologist. Your MRI was ok." They've sent me instead an appointment to see someone in audio-vestibular medicine. In November. Sigh.

I'm so sorry for the rant, but I'm at the end of my tether, and I'm generally a patient, sunny person. But it's getting ridiculous now and I don't know where to turn to.

Many thanks for listening and any advice. (Ps I'm 35, Female)

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HI mudskippa,

Its so crap isnt it? I saw an audio vestibular scientist yesterday and I pretty much passed all the balance tests etc, and came out with exercises to do at home for six weeks. I know the GP will go back to "anxiety" (which of course I now have), and still no MRI etc.

But why Propranlol? Isnt that a beta blocker for heart arrythmias?

Yes, like you, no diagnosis but each "specialist" has a different opinion! Perhaps they should cross reference each other once in a while!

Its driving me nuts now 4 months in and no better....

 

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Hi Chris,

Thanks for replying. Yes, last time I had vertigo several years ago, the ENT guy had me marching on the spot for a minute and said "well you're ok now then" and just discharged me! I was improving by that point, but was in no way better. I was struggling to do it without falling over.

This time around, I was told by one neurologist that it was probably psychosomatic and exacerbated by anxiety. He suggested I look into doing CBT. I TEACH CBT as part of my job lol (I'm a therapist and writer). It is difficult when it seems people are fobbing you off all the time.

I do understand things like this are not easy to diagnose, but it feels there is very little support. Even if they sent you away with 6-weeks of exercises and checked in with you each week it would be better. I was given Cawthorne Cooksey exercises in Jan and had a follow-up in June. That's just awful, espcecially if you're not improving (which I haven't since Feb).

Propranolol is something the other neurologist suggested. Some people get something called Migraine-Associated-Vertigo. Propranalol has been shown to be useful in some cases for helping if you do have that (which I'm not sure I do, but there you go).

I'm so sorry to hear you're not better yet. If it doesn't start improving at all (mine is just 'stuck' where it is now), please do look into seeing a neuro-otologist sooner rather than later. I'm considering it now (Well I was already considering it, but thought I was actually being sent to a good ENT hospital with a neuro-otology department. Turns out I was wrong.)

Warm wishes to you. 

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Well mudskippa, you may have another patient! 

I'm seriously considering the anxiety route now. Don't get me wrong, I really don't accept I have this, there is nothing aside this vertigo/dizzyness in my life that could cause "anxiety". But as dizzyness is the only symptom of MS, tumour, stroke etc that I have I assume the "when you hear hoofs it's probably horses...not zebras" applies! Of course I may be unlucky. But looking on the positive side...SOMETHING is causing this to continue. My inner ears are fine, I had a full test suite yesterday including the pressure/warm water/eye co-ordination physical exams and the hopping and figure of 8 ones and so on. Really nice guy, not a medical Dr but an audio scientist.

He suggested I was pretty much recovered physically, that is my ears and tests were fine, but that I had not recompensated.

Still, no diagnosis really! So I am still a little stressed about that. Perhaps CBT may help? 

I'm lucky my wifes company scheme has meant I haven't really waited more than a few weeks for an appt and the Spire guy I saw initially is an otologist. I guess the neuro bit is just a sub speciality.

However my main concern in going down this route is that the GP who referred me and the Otologist I saw all linked my condition with flu which I had a week or so before this started. I wonder if it could be a red herring and just be a coincidence? Probably not, and I should listen to the pro's!

I asked about the Propranolol as I do have an ectopic heartbeat (unrelated to this dizziness, just another pain in the a*se) and had come across it before.

I'm pretty confused as to where I go from here, six weeks more of this just for a revisit with my tick sheet of exercises isn't helping my state of mind!

Hoping things improve for you, It does help having a supportive partner as you do, but I still feel pretty useless these days in putting so much on mine!  Flowers all the time don't quite cut it! 

    

 

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I took propanolol for a few months I had been taking atenolol a little over 3 years. One day I decided to see a new dr. He changed it to propan

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Oh, I also meant to ask, have you had your thyriod levels checked? A common symptom of hypothyroidism seems to be our type of problem, perhaps a tenuous link but I had a full screen done and it seems I am one of those lucky 1:1000 men who has an underactive thyroid. Now the GP told me it was clinically insignificant and not treatable but so many seem to get symptoms with much lower counts than I have. Just a thought!  

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Sorry I hit wrong button.

So he gave me propanolol. He wanted to give me other meds too for depression ...etc. I never took any of them only propanol ( high blood pressure/ anxiety). Although that med is for what Chris said too. Honestly it did nothing for me. I went to see my new dr now and I told her it wasn't doing anything for me. She said of course not , this medication is in your system for 6 hours only. I was surprised. She switched me back to atenolol I know you don't have HP since you didn't mention it. Not that I noticed. I pray and hope everything gets better for you and all of us here

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sorry to hear you've had a relapse.  It's so unpredictable and frustrating.  I was on bisoprolol, a beta blocker, similar to propanolol for high BP/chest pains once a few years ago and it slowed me right down in a good way.  My BP resolved after about 6 months on it and i stopped taking it.   Beta blockers are meant to be good for anxiety.  I have BPPV and also ENT said MAV.  I've tried all the medications and changes in diet and find after an attack of BPPV only time makes things any better.  I had an attack in April and have been feeling much better past couple of weeks but for 6 weeks felt as though i was going back to square one.   I hope you feel better soon and get your smile back.smile  Best wishes. 

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OK, here's my take on it. I have read forums like this a lot, and I so many people get told "It's just anxiety". When you have symtoms as severe as we do, it's never just anxiety (or at least not of a type that you're causing).

If you have decompensation, your balance signals are wrong and your brain doesn't know what to think. It panics a little: "Like where the hell are we in space? Are we upside down right now?" This can cause your heart to beat faster, and your brain to worry more (because your heart is beating faster). That's not YOU doing that. IT's a natural reaction of the brain. But the mind-body connection is very powerful.

But a good tip: Learn to breathe more deeply. It will calm your body down and 'tell' your brain there is no reason for it to panic, helping to end anxiety cycles. Especially if you have to go out and do something which you know will make you more dizzy. 15 minutes of deep belly breathing activates the vagus nerve in your stomach which tells the body (and thus the brain) to calm down.

And if you start avoiding going out because you're afraid you'll fall over all the time or you have some terrible disease, that's when anxiety stops people getting better.

When I first started getting slurred speech and really poor coordination, everything I googled said 'Most likely MS'. I actually didnt worry, because no matter what my illness IS or ISN'T, that's not something I can change if I do have it. If that was the case, I would just have to learn to deal with it, just like everyone does with every other issue life throws their way. And we always do, even if we have the odd 'can't take it anymore' day.

All you can do is your best to make Drs listen to you, attend your appointments etc and be grateful for the good things (Like my cat is loving me being ill rather than at work!).

Dizziness can actually be related to irregular bloodflow, so it might be worth getting that looked into again and see that you're on the right meds.

And I'm sure your other half more than appreciates the flowers and is happy to be supporting you when you need it smile

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Yp had my thyroid done and that's all good thanks smile 

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Thanks for the reply Anne and your knid wishes. I try to keep the smile most days, but I think it was the letter that said I'd have to wait another 4 months for a different specialist that made me a bit down in the mouth. I'm so glad you're over your relapse. there you go it's back --- > cheesygrin I like other people's good news!

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Thank you Lily. It's always very helpful to get extra info and nice to have your kind wishes.

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Thank you for your reply, all info and support helps. I'm going to look at breathing and meditation as even if it relieves symptoms that's a whole lot better. I tried acupuncture and even a chiropractor but only temporary (probably placebo) relief. 

I'm pretty sure the ectopics are not responsible, although they are exasperated by this cycle of grief but it is something I keep an eye on.

Yes, like you I'm a pretty positive person, sure I Google but I also don't worry about what I read, we have to have faith that the Dr's are better trained than our hours of internet research, but I like to go forearmed.

Good to share and please keep us updated on any progress! 

ps I know what you mean about the cat - mine love the extra attention!

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Your best bet is to see a Neuro-Otologist.  They specialize in inner ear disorders.  From what I read as to your symptoms you either have an inner ear issue or a cerebellum issue.  The Neurologist would be the doctor to see for any cerebellum issue but the Otologist can help with the inner ear.  Just because the MRI was clear, all that means is that they say no mass or no bleed.  The nerves, unless your MRI was done with contrast, cannot be seen.  Nothing with the inner ear can be seen on MRI except an acoustic neuroma, and that also requires that the MRI be done with contrast.

A good website to visit if you go to Google is to key in Vestibular Organization it should be the first site listed (VEDA).  You will see that you can research the symptoms that you have and I believe that you will find that they are inner ear related.  I am in the US so the decision to see an Otologist is just a matter of deciding that you want to see one.  That, in my opinion, is the best physician for inner ear issues.  I struggled with this stuff for 15 months and finally can say that I have recovered.

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Hi Terry, so glad to hear that you have recovered.  What do you think helped you the most in that recovery.  I am due to see a neuro otologist next month,  Many thanks for any advice.

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this waiting and waiting to be seen by ENT doesn't help.  In the end after a 5 month wait to see the ENT guy he went sick on the day of my appointment, so i paid to see him privately the following week cos' i was so fed up waiting,  I have another appt now to see a neuro otologist next month so keep updated on how things are turning out for us all with these appointments and we can share notes.   Hang in there smile

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Unfortunately, I think that time played the biggest part of my recovery.  It just takes time for the damage to the vestibular nerve to heal.  The one thing that the Otologist told me when I first saw him last September was that I needed to be on a low sodium diet.  He prescribed a 2000mg limit on my sodium intake per day.  The reduced sodium will aid in helping to rid the body of excess fluids.  The only other things that I did was to take a low dose aspirin every day and I did VRT for 3 or 4 months.  Not sure if it helped but it, the VRT, made me do things that caused issues with the feelings created from the inner ear.  Weather changes, barometric pressure, really crerated problems for me.  I have just in the last couple of weeks been able to go in large stores and not feel like I was floating and feeling imbalanced.

I took most of the prescribed drugs that others on the forum mention and had little success with any of them.  I did take a Xanax on occasion to help control anxious feelings from the inner ear issues.

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Thank you. That's really extremely helpful Terry.

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Try the low sodium for 30 days and see if it helps.  In the UK I believe that your recommended daily intake is rated in salt intake of 6 grams.  Reduce that to 5 grams and it will equate to the 200mg per day taht I am on.  You will be amazed when you look at labels to see how much sodium/salt that you injest each day.  Take out/fast food and processed food is the worst for high levels of sodium.

If possible, I would demand to see an Otologist, though.

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Should be 2000mg instead of the 200 listed above.  I hate that this site doesn't spell check as well.