Labyrinthitis and Prochlorperazine Maleate

Hi Rach

I am curious as to know how you are getting along? I have had labyrinthitis for 5 weeks now and have been given Prochlorizine tablets (I think similar to yours). They allow me to get through the day and to work on the computer too. I am self employed so no paid time off for me! I too am worried about staying on them long term since I keep reading about them hindering the long term recovery. I managed to get down to 2 a day but then last week had to go back up to 3 a day because I had a really bad week. Now I have been given Serc to try for the dizziness but have to take these for a while before I see any effect (if any at all). I feel I cannot manage without the Prochlorazine because I get incredible anxiety when the dizzy symptoms happen, have had one panic attack and hate the preliminary feelings before one comes on, though am trying to stop them from happenig with breathing exercises. I am going back to my doctor on wednesday to ask to be referred to an ENT specialist and physiotherapist for some VRT because I do not want to keep on like this!! I too am going to try and wean myself off them, as I keep taking the serc in the hope they help me with the symptoms of coming off the Prochloazine. Sometimes its horrible because no one seems to get how difficult it all is! If I didnt have the tablets I know I'd be full on agoraphobic instead of just avoiding supermarkets and the subway. I don't know how you are managing to drive! Let me know how you are getting along and if you dropped your does and how it made you feel. Michelle

Hi Michelle

I have now been off work for eight weeks. I am due to go back on Thursday and feel able to do this, although a little anxious of having an "episode" whilst at work. I only work four hours a day so I am hoping that I can manage to get through the day if I don't move around too much. I reduced the tablets to two a day for a week and felt dreadful so had to increase them back to three a day. I am still taking three a day and I feel that I will fall to pieces if I stop taking them. I spoke to the doctor about my concerns re taking them long time and he said that I am able to take them long term and that this would not be a problem. He also said depending on how I felt, I could maybe have a drink (one) to celebrate my birthday. All I can say is, BIG mistake - will not be touching a drop now until fully recovered and off the tablets. It just made the dizziness a million times worse and the anxiety came back.

I am managing really well though considering how bad I was a few weeks ago. I am able to drive now and can go to the supermarket (as long as I have someone with me, if I was on my own, the anxiety would be too much). I do struggle with looking down the isles for a specific item though as that sends me dizzy. I find that I have really good days where I feel I could do anything and then boom, back to square one with a really dizzy day and feeling dreadful, then the next day ok again. I hope that this is something that I am not going to have long term.

What's Serc? Please let me know how you get on with these and whether they have a better affect that the others. I am conscious not to change my meds as I tend to have a low tollerance and become very drowzy, something I have not had with the Maleate tablets which is a godsend.

I have been referred to ENT and have an appointment on 9 August, I will let you know how I get on. I am worried that they will suggest coming off the Maleate tablets and worried that I will then have a relapse.

I totally understand everything you say, I have exactly the same problems. I would be interested to keep in touch and let me know how you are getting on.

Rach

Hi again

Good luck with going back to work! it is very scary I imagine. The thing that has been getting me through my anxiety is in those moments when it all becomes a bit too much (brain overload I call it) I concentrate on my breathing, breathing in through my nose slowly, holding for 3 and then letting it out slowly through my mouth. I have to do this somewhere quiet for a few minutes but it usually calms my brain down and stops me focusing on those panicky feelings when I feel them start. I have also been using Rescue Remedy and take a few drops when I know I have to do something which could trigger this.

I too had dizziness when I attempted half a glass of wine so I have sworn to not touch another drop until I feel almost normal again - I don't want anything to set me off or set me back again. I've also drastically reduced my tea in take and had no coffee since this started.

I have heard conflicting things about being on the tablets. I think when they say long term, they mean months and months or years, so for now, I wouldn't worry about that. As it happens, after my bad week last week, so far, this week things have been easier and I have gotten down to 2 tablets a day again. I have though been using Serc, so I really don't know if it is this that is helping or that my symptoms are getting better. All I know is Serc helps the dizziness whereas the other helps the nausea. I think they are milder and safer to take, as they don't have anywhere near as many side effects. They also don't make me drowsy. I am hoping to finish this week on 2 tablets (of the prochlorazine) and try and get down to 1 tablet next week. I shall have to let you know how it all goes! I have also been referred to an ENT specialist now and wait for my appointment.

I found with me the anxiety was the thing I had to beat. I have had to give myself a real talking to sometimes and tell myself nothing is going to happen, just take your time, think about your breathing, doing these things help. I have also tried not to take my Procholrazine in the morning until the moment I feel I really need it (or I'm going out since I need it then!) as I believe it is important to be doing small things without the drugs to see an improvement. Gradually this week, that time frame has gotten bigger and I find this so positive! i imagine it must be harder for you with a child and having to drive. I can't imagine having anyone other than myself to look after. Are you able to get help in driving your daughter to school sometimes?

All I know is, this illness is so different for every one of us, from length of symptoms to the symptoms itself. The main thing is to not try and fight the dizzy feeling and not to be afraid of it, but to just let it happen and stay calm. I really hope you start to see an improvement soon. I am trying not to get my hopes up at the moment but am still taking each day as it comes.

Michelle

Hi Rachael

I was just wondering how you're doing? I found in the end Serc had no effect on me, but have gotten gradually better as time has gone on. I still have some symptoms but no where near as bad as they were. It is on its way out thankfully. I will say though, I was left with a lot of nausea sometimes, and for this I found taking a ginger capsule or having some ginger tea helped, in some instances more so than the tablets my doctor prescribed for me. I hope you are feeling much better too.

Hi Michelle

Sorry, I've only just seen both your posts.

I'd been doing ok for a couple of weeks and back at work but still on 3 tablets a day. I'm suffering badly with tthe anxiety though and found I had to turn around and come home a few days and work from home. I went to see my GP about the anxiety and he prescribed me Venflaxine on Wednesday. Not a good idea as spent the last three days in bed, had a bad reaction to those. Been very "travel sick" today with the dizziness and nausea but think that maybe because I've not eaten for three days.

I think I will have to try Rescue Remedy. Do you find it is ok to take that whilst taking Prochlorparazine? Due to go on holiday to France in a fortnight and I'm dreading the anxiety of travelling so definitely thinking rescue remedy may help.

I have my appointment with ENT next week so hoping that they may help. Although I feel like in getting better, every few weeks I seem to have a major set back.

Keep me updated as to how you are getting on and your progress. It is good to hear from a fellow sufferer

Rach

Hi Rach

I'm really sorry you don't seem to have seen an improvement in your symptoms that much. All I can say in reference to myself is that I too would seem to have a couple of really bad days followed by some not so bad days. I began to recognise this as a pattern, that I would force myself to do a little more, then suffer for it, but then realise it had actually helped as I would then see a little improvement. It has been slow though, I just wish it would speed up for you. I'm really glad you have an appointment next week, perhaps they can get to the bottom of your problem and suggest some exercises for you to do to help. I know the small amount of VRT exercises I have been doing, along with some yoga in the mornings has really helped me. Concentrating on my breathing really helped my anxiety.

I am very happy to report that today was my first day drug free! I never thought I would get to this point. Recently I have been trying to go as long as I can without and today has been the first day I have felt comfortable enough not to take any. I still have had the dizziness and some nausea especially when walking, but this compares to the same when I was on meds, so I think this is good! I just have taken it very easy today.

My doctor also tried to give me something for the anxiety but I wasn't very happy about having something so strong that I could become reliant on so I battled through it without. What helped me was taking some drops of rescue remedy before going out, before traveling, before shopping etc and it really helped. I also carried it around with me. It never interfered with my meds, so I think you would be ok. I've even given it to my cat before she went on an aeroplane!

I attempted half a glass of wine on the weekend. It felt like I had drunk much more and felt a bit weird so didn't have any more. It was nice though to just have half a glass! I am going to wait a bit before trying again.

Just hang on in there. Progress with this is such a slow slow thing. It all depends on how much damage has been done and this is something the ENT specialist will be able to tell you. I really hope it gives you some answers.

Hi Rachel/Michelle,

I don't know if I can help but was diagnosed with Labrynthitis in April 2011 at the age of 41. I felt very tired after a really bad viral chest infection and was off work for 2 weeks as unable to walk up and down stairs (live in 3 storey house!). The doctor did not want to prescribe antibiotics as not a bacterial infection. I went home from a day shopping and the room started to spin and I felt strange. I went to bed for a couple of days but then pins & needles started in my left arm and I was unable to keep still so went to the out of hours doctors. By this time I was walking like Bambi as my balance had totally gone and I still had the pins & needles feelings all over my body. I really thought this is it! Luckily, the out of hours doctors were brilliant - they checked blood pressure and balance and straight away said this is a form of Labrynthitis. I was prescribed Prochlorperazine which made such a difference to the condition. Unfortunately, the doctor did NOT mention that caffeine, chocolate and alcohol are all triggers as well as noise but I discovered that myself. I kept trying to come off the tablets and was ok for 3 days and then the dizziness, shaking all over and feelings of depression would come back. I tried to keep positive but found it difficult to go into a supermarket or anywhere noisy (cinema was the worst!) as it would bring on a violent attack of the shakes. Then in June I had very painful headaches for about 3-4 weeks on the side of the nerve damage which went over my head from the left to the right. I contacted the doctors but was told to take paracetamol and ibuprofen alternatively every 2 hours until the pain subsided. I was then put on the ENT waiting list to see a specialist. In the meantime my parents paid for me to see a consultant as was unable to go to work. He was very positive after checking my hearing and balance. He gave me a cognitive behavioural exercise sheet which did help. I went back to see him after a couple of months as still getting pins & needles in my legs and randomly over my body it was then he told me that the symptoms can last up to 2 years. In September 2011 I paid for a MRI scan as I was still suffering with anxiety and movement in my head (a bit like a worm wriggling) plus the pins & needles especially in my legs. He said that the more exercise you can do the better. My MRI scan was normal. I had stopped taking the Prochlorperazine tablets in August 2011. The tablets did not have any detrimental affect but they really did help my anxiety and the shaking. I found that drinking anything with caffeine made me feel strange and now I mainly drink decaffeinated. Chocolate also caused mild problems but that now seems fine and Labrynthitis put me totally off alcohol for a while as I did not want to feel off-balance again. I am now able to drink, eat chocolate and have tea/coffee and go to the cinema (with ear plugs!).

I really thought that this condition would never go but it has. If you don't want to take the tablets apparently Yoga/meditation should help.

Sara

Hi ladies, I know your Labyrinthitis has gone, but I was wondering if you could answer any of my questions. I was diagnosed with it about a month ago. I was prescribed prochlorperazine but my dizziness only lasted three days. Unfortunately it has come back and I have had it now for a week. I have been taking my pills three times and day and have been feeling a little bit better. Do you think I should keep taking 3 a day, or try and ween myself off them? I have also been unable to sleep on my side and have to sleep on my back. It is very uncomfortable but I get dizzy otherwise. Any advice would be much appreciated.

Thanks,

Francesca

Hi Francesca,

I hope that I can be of help. I was told by the doctor that I should try and wean myself off the tablets so I took them for a month then tried to stop taking them. I did this every month for about 3 or 4 months before I could come off the tablets completely. It is difficult for the doctors to tell you when the condition will end because it is different for everyone. The tablets are given to stop you feeling dizzy, sick and anxious while you body repairs itself. Keep trying to come off the tablets evey couple of weeks or so - there is no hard and fast rule. I used to try and come off the tablets then if I felt strange I would take a tablet for a couple of days and the feeling would go. Eventually I could stop taking the tablets altogether.

I found that when I felt dizzy I tried not to move my head too quickly from side to side as this made it worse. I do appreciate how scary the situation can be. If you have any other questions I will be more than happy to answer them.

Kind regards,

Sara

Hi Francesca

I started symptoms of Labyrinthitis the beginning of June and I can say that I am now probably 90% over it. I had to take tablets three times a day probably for the first two months. In order to ween myself off I tried every morning to wait a little longer before taking one, as long as I could before the symptoms became too much for me. In this way I was able to reduce to two times a day, and then eventually just once a day, then down to about three times a week (basically when the symptoms became worse - usually in the evenings when I got more tired or if I was going on public transport or something), until eventually I took my last tablet about a month ago one evening after a particularly long day on the computer.

It has taken me 6 months to get this far, but now I can have tea and coffee again and also a glass or two of wine, though it does leave me feeling a little worse for wear the next day still. I can now go on all public transport, go the pub, go to a gig without feeling uncomfortable. I am just much more tired at the end but I am hoping in a month or two this will have gone too. The only test the ENT did was a hearing test and because I had no hearing loss, they did not deem it necessary for me to have an MRI scan. I paid for my own physiotherapy - he was a godsend! I wish I had visited him earlier on as I might have recovered quicker. He gave me specific exercises (a lot of them I had already been doing from watching videos online of VRT) and used special apparatus to check my eye movements when he positioned my head in various ways. He actually gave me the diagnosis of Vestibular Neuritis, because I had not had any hearing loss. Today was my last of three appointments and he said he doesn't want to see me anymore unless after two months I am still experiencing symptoms. He also said stay as active as possible even though you feel better otherwise you may have small symptoms that linger for a long time. It is such a relief though to be feeling this much better because I honestly thought in the summer I would never feel normal again!

Something you may find useful, since being diagnosed with this I had to leave a small light on all night to help stop the dizziness at night. At the time I couldn't really explain it but it helped me tremendously to not be in complete darkness. When I mentioned this to the ENT specialist they said this made complete sense because out balance systems need three things to know where we are positioned. Our sight, or inner ear and our body. When our eyes are closed and our inner ear isn't working properly, our brain can't work out where we are, hence we feel dizzy at night or in the dark. (For a long time I couldn't walk very easily at night). You may benefit or find it more comforting to sleep with a small light on for the time being, just as I did.

Good luck and stay positive!

Hi,

Thank you all so much for your feedback. I went to the ENT and have been told i was mis-diagnosed. I actually have Benign Paroxysmal Positional Vertigo but obviously the symptoms are very similar. I hope everyone improves soon

Francesca

HI Francesca,

I am so pleased you do not have Labrinthitis. I hope you feel better soon.

Take care.

Sara