Here we go again

Hi. I would like to tell you a bit about myself. In 2009 I started to suffer with light headedness. I was eventually sent to ENT. After two years of constant suffering I was discharged. I watched Embarrassing Bodies and contacted Dr Surenthiran who diagnosed MAV. I was put on Gabapentin for two years (various doses and other top up meds). After two years of the Gabapentin I was taken off them and left with a little bit of lightheadness now and then (maybe lasting five seconds or so). I could live with that! I had my life back! Last September I had crackling in my ear for a few days, an then fell over… I was diagnosed by my GP with Labyrinthitis. I kept questioning it as I’d been diagnosed incorrectly last time. I think he got sick of me asking and sent me to a local Balance Clinic. I was told it was MAV again, although many of the symptoms had presented themselves differently to last time. I thought great. I just need the Gabapentin again and I’ll be fine. Wrong. They didn’t work at all. After four weeks I was taken off them and put on Propanalol which I haven’t had before. This is day six and I have been more lightheaded than normal since yesterday. Sleep is a problem and I have a mild headache. I’ve only been given four weeks worth so am assuming I will have to decide whether to continue with them quite a bit before they run out, I would imagine I have to taper them off. I can’t take Amitriptiline or Nortriptiline because I have SVT. I can’t take Topamax either due to constant headache. I think I just wanted to post as unless you’ve been in this situation it’s hard to understand what it’s like. I never thought it would happen again. It’s far worse this time as well. I already suffer with long term depression so to say this hasn’t helped is an understatement. I was frightened I would be misdiagnosed again and left for the rest of my life in that state. Now I’m frightened that the doctors will run out of options. Dr Surenthiran never tried me on Propanalol, so I’m wondering why? I really trust him but it would be hard for me to get to see him again. Thank you for reading my post.

Hello GailM. I am sorry this has hit you again but I am afraid it is the nature of the beast we call VM or MAV which I have had for 11+ years. At first it would last for three months completely flooring me and then it would go only to reappear months later bringing with it additional symptoms, as is the case with you. I was diagnosed 3 years ago and started on nortriptyline in December last year having struggled alone all that time. It is a permanent visiting beast now!

Now for the meds bit. I have SVTs, nortriptyline does not have any effect on them whatsoever and as an antidepressant would help with your depression. I have also had topiramate added this past week because I cannot tolerate a dose above 10mg of nortriptyline but that has helped me so my neurologist wants me to stay on that with the addition of topiramate, which also has no effect on the heart in a negative way. The dose at present is very small, 12.5mg, to be increased by 12.5mg increments a week until I am up to 50mg a day if I can tolerate that. I was informed that the beta blocker propranolol is contra indicated because of my SVTs as it is a beta blocker. Now I am not a doctor but I would either ask your pharmacist or your doctor if a beta blocker is ok in your case, you may be different from me in as much as the driver of your SVTs is different. Also read your leaflet because it will state contra indications on it. On a plus note there are a lot of people who have been helped by propranolol. It is all trial and error as there is no magic medicine that works for all of us sadly.

Are you also aware of the possibility of food triggers, namely caffeine, msg, chocolate, alcohol etc? Sorting them out helps some people more than others.

Dr Surenthian is said to be one of the best at treating MAV/VM so I am sure he has prescribed what he thinks is best for you but we have to help ourselves too as this disease is so complex.

I hope you feel better soon.

Hi. Thanks for replying. I trust Dr Surenthiran totally. He’s lovely. I decided to ring his Secretary and explain the situation I find myself in. I asked if there was any way he would do a phone consultation. Initially she said no she didn’t think he would. She then changed her mind and said he’s away till the 28th and he would phone me. I would rather have guidance from him, than just go with whatever my GP gives me. Hopefully if I’m really lucky I can get back to the level I was at before last September. I’m a bit confused about the Propanalol. On one hand the information sheet states do not take and tell your doctor if you have rhythm problems, and on the other under usual doses it gives the dosage for fast heartbeats??? Go figure…I’m still in shock that the Gabapentin had no effect this time. I remembered being told about the food triggers. Thankfully I don’t drink alcohol, but I’m a chocoholic who’s favourite drink is Coke…I hope you feel better soon too.

Roll on the 28th, I will keep my fingers crossed for you. Good luck and keep me posted please as I would love to know what you are offered as not many of us have known SVTs I don’t think.

Hi GailM
Just wanted to let you know I have a telephone consultation with Dr S as I live too far away from kent so he does do them!!

IM taking 80mg of Propranalol and its been great for me - but everyone is different. I get slight blurry vision but no Vertigo and sleep shock which is what made my life such a misery the last two years. Find a drug that works for you and try to keep positive …

Hey Gail, sorry you are going through this and going through this again, how heartbreaking! It came back for me too, though initial bout was only 5 weeks, then a 5 month break.

So basically you suffered for 4 years then had a 3 year remission/break and then it hit you again? (Though different this time). Gosh.

Dr S seems to be great so I’m sure you’ll work out a good strategy with him. And you’ve been there before so you are better equipped to deal with it mentally?

I’ve not dealt with it very well at all this time unfortunately. Maybe because it’s worse, maybe because it was under control for so long and maybe because I was worried I would end up with a misdiagnosis again. I was hoping to speak to Dr Surenthiran yesterday. I didn’t receive a call and when I phoned I found I’d been given the wrong information and so I’ve got another week to wait. I don’t know what to do about the Propanalol. I’ve been worse since last Wednesday and am now to a point where I’m unable to leave the house as my balance is so bad. I’m assuming it’s the medication. I’m not normally as bad as this. I’m not sure how much longer I should take them (so that I’m giving it long enough), before I throw the towel in with them. I’m housebound now, and I wasn’t before, although it wasn’t easy to get about and I knew my limits.

How long have you been taking the propranolol for? Is it possible to lower the dose a little? I ask because a med can help at a certain level and then have the opposite effect if that level is too high for you.

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This is the 12th day. I’ve managed to get an appointment with the Duty Doctor today at 4.40 today.

How did it go?

I’ve been put on Propanalol sustained release. He said there’s nothing else if these don’t work. I mentioned how good the Gabepentin was years ago but had done nothing this time. He said he would have put me on it for three months rather than taking me off it after four weeks. I questioned him about a higher dose of it, so this could be an option if the Propanalol doesn’t work/causes bad side effects. After he told me there was no other medication to try, he then proceeded to take my blood pressure. It was high ( and I have normal blood pressure). It’s hardly surprising is it after what he’d just told me? I think I just have to be patient and see what Dr Surenthiran suggests next week. In the meantime at least I only have to take one tablet, not three:slight_smile:

Fingers crossed that the new regime works for you so that you feel more in control until your call with Dr. s next week.

What seems to work for one - doesnt seem to work for all …its best finding something that works for you. Im sure Dr S will have an answer …i hope they find that for you !!

Thing to watch for ive learned with propranalol is your heart rate - it can lower it considerably so possibly could make you feel a little faint. Nothing to stress about though as long as you pulse steadies itself - mine dropped into the high 40’s when i first started taking in but now has steadied in the 60’s and occasionally going into mid 50’s. My blood pressure is now near normal - Im sure it was being affected by the vertigo and migraines and sleep shock.

On the first lot of Propanalol my heart rate reduced by 20-30 beats a minute. On the slow release it’s around 20 beats slower. I haven’t felt faint though.

Not much of an update unfortunately. No phone call on Tuesday. Phone call from Dr Surenthiran’s PA at 5pm Wednesday to see he will see me in Blackheath on Friday. I’d asked for a telephone appointment/consultation, not a visit to Blackheath. His PA said I will speak to the Doctor and get back to you. I rang Friday afternoon as I’d heard nothing. I was told they would email him. I’m still waiting to find out what’s happening…

Oh my goodness GailM I am so so sorry to hear that. You must be fed up beyond words. I hope you had the energy to give the PA hell!!!

Actually no I didn’t give her hell, I held back somehow!:astonished: I did point out though that I’m staying off the phone all day every day waiting for a call from them. Let’s just say I’m not best pleased…The slow release stuff feels slightly better for me. I can at least walk short distances again outside which had stopped because of the reaction to the original Propanalol. However I think I feel better without it in my system at all. This is day 22 of Propanalol as a whole. If I don’t get a phone call on Monday, I’m going to find it very difficult to be “nice”:rage:

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Well done you for being so patient!! I am sure that was the right approach of course, just amazingly difficult to do under the circumstances. Good luck for next week, I hope it all goes well and your patience is well rewarded.

Thanks. I will let you know.