Hi everyone haven’t been posting much but have still been browsing. Hope you are all doing OK.
Just thought I’d post this as I know when I was really bad I liked to hear the ‘happy’ stories. I don’t want to post in the success stories just yet…not quite there!
For those of you who don’t know me, long story short - in January was diagnosed with labrynthintis initially by GP. Turns out it was MAV and am now a patient of Dr.Silver’s. In short my symptoms were dizziness, feeling faint, extreme anxiety, feeling like I was on a boat… you get the idea. I also have experienced visual vertigo, migraine headaches but I must say the unsteadiness was the hardest to cope with. I started off on 80mg propranolol and am now on 240mg. I also take iron tablets and folic acid as suggested by Dr. Silver, the reason being my levels were low.
Now, the reason for my post I was a mess when this kicked off and I realise i am very lucky to have made progress so quickly, but with time and patience you will get there. I am not 100% which is the reason I don’t want to post in the success stories section, but I am able to do a lot more than I could. I expect there will be ups and downs, I still have some dizziness but instead of it being constant I have a short burst of it. Hardly bothers me, grown kind of used to it I guess.
Back to Dr. Silver in June so will post an update then. May well introduce another med to reach 100%, not sure yet.
I realise propranolol doesn’t suit everybody, It really is a matter of trying out different meds to see which works for you. My second line med is Topamax, would be interested to see if that could help me reach 100%. I think you can take the 2 meds together, not quite sure though. Has anybody tried this combination?
That’s great Kathy. Sounds like you got really lucky and hit the jackpot with the first med you tried! I am sure this will inspire others to try Propranolol. I think the problem for lots of people is they cannot tolerate such high doses of it so it’s great that it doesn’t have any adverse effects for you! x
Fingers crossed it keeps working! I haven’t had many side effects really, I felt so dreadful at the beginning of all this that I couldn’t honestly say what was the MAV and what were side effects. I would say that for a good couple of weeks I wasn’t sleeping especially well, I do tend to wake a few times in the night. As I am off work at the moment (want to be feeling well for a while before going back) it hasn’t bothered me too much as I don’t need to get up for work. If it continues once I’m back at work it could be problematic! Will mention it to Dr. Silver.
I am very lucky Jem, just don’t want to get too carried away though! I still worry about it hitting hard again but try to not think negatively. I’m just very thankful for how much progress I have made so far.
Dr. Silver only mentioned cutting out dizzy drinks, caffeine etc and eating a healthy diet. In fact I read somewhere on this site that food didn’t necessarily play a huge part in all of this. It was a PowerPoint presentation created by him. I can’t remember figures/percentages, I also can’t say I agree entirely as I think food can play a big part in this. I just think that his view is that compared to other triggers it plays a smaller part.
I definitely watch what I eat now, I am far more lenient than I was but avoid Chinese food, chocolate etc.
Thats wonderful Kathy, thank you for posting this!!! Are you now on the max dose of propanolol? Did you have to keep upping it to maintain its effects or how did you get to such a high dose? Has it made you feel more steady walking? What % do you think you are at now?
Try not to worry about the future and enjoy feeling better today!!!
Thats wonderful Kathy, thank you for posting this!!! Are you now on the max dose of propanolol? Did you have to keep upping it to maintain its effects or how did you get to such a high dose? Has it made you feel more steady walking? What % do you think you are at now?
Try not to worry about the future and enjoy feeling better today!!!
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Hi Sarah
I think you can go up to 320mg but I feel pretty good on this dosage. In Dr.Silver’s letter to my GP it is not quite clear whether I should go up to 320mg and seeing I’m doing well I will just wait till I see him next. I gradually increased the dosage every 2/3 weeks as advised by Dr. Silver. I stayed on 160mg slightly longer as my GP cocked up my prescription! It wasn’t really a matter of having to increase to maintain the effect as it is only now that I’m feeling much better than I was.
In Dr. Silver’s letter, which is slightly difficult to understand, he recommends that you increase every 2/3 weeks, aiming for the highest tolerated dose. At first glance it appears to be that you are aiming for 240mg but he also mentions 320mg, so I’m not quite sure how far he wants me to increase! I know other patients of his have been confused by the wording regarding this dose.
I definitely feel more stable walking. When I first got hit with this I felt very unsafe on my feet, as if I was going to stumble. I don’t know how much that was down to MAV or my fear of MAV! I was so anxious, so dizzy, I was very worried that I’d lose my balance and fall.
I am a lot better, there is no comparison to how I did feel. As you know I still get funny spells but I’m not frightened of it. I think anxiety really exacerbated the MAV, the propranalol has had the added effect of calming me right down It’s very difficult to say what % I feel. Erm… Some parts of the day I would say 100%, when I say that I mean that I am not aware of any dizziness. As you know it can change throughout the day, when sitting down I do notice some dizziness, at which point I would say I’m 80/85%. From a starting point of 5/10% I would say that it’s pretty good going.
I have heard Scott post about MARD in the past, I must read a little more about it as anxiety was a huge issue for me and definitely fed the MAV.
that’s awesome Kathy- I’m glad to hear things are going so well!!! Keep us updated on your progress! I’m the same I am doing some antibiotics now for supposed lyme but honestly they aren’t doing anything…I am supposed to stay on it for another month and then after that I will try atenolol…I hope to have as much luck with my beta blocker as you! Has it ever made you feel lightheaded and woozy? I am nervous about getting that as a side effect.
I hope that the antibiotics start to help you soon. Hopefully in the next month you will feel some benefit.
I do get woozy when standing up after sitting down, I have always suffered with this though. Yes, it is probably more noticeable now but I think if I didn’t stand up as quickly it would probably help. I can cope with it, I’d prefer that than the 24/7 rocking sensation.
It actually says in Dr. Silver’s letter that ‘dizziness or apparent low blood pressure does not contraindicate use of propranalol, if anything propranalol is actually used as a treatment for postural hypotension (dizziness induced by standing up) and is considered first line treatment for many patients with regular fainting’. After reading that I relaxed a little
Dr. Silver only mentioned cutting out dizzy drinks, caffeine etc and eating a healthy diet. In fact I read somewhere on this site that food didn’t necessarily play a huge part in all of this. It was a PowerPoint presentation created by him. I can’t remember figures/percentages, I also can’t say I agree entirely as I think food can play a big part in this. I just think that his view is that compared to other triggers it plays a smaller part.
I definitely watch what I eat now, I am far more lenient than I was but avoid Chinese food, chocolate etc.
Hope you are both doing well
Kathy x x x
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Great to hear you are doing so well Kathy and long may it continue.
The figures usually quoted on this site (I can’t recall where they are sourced from) is that diet will help about 40% of people with VM. Having said that I’ve personally only ever noticed that if I’m symptomatic Diet Coke can sometimes ramp things up.
Neither of the two expert neurologists I’ve seen - Prof Halmagyi and Dr Granot - believe that diet has much to do with controlling and/or triggering migraine althoug Prof Halmagyi did suggest avoiding red wine and MSG.
I am so pleased you are doing so well on the propranolol. I have just increased to 240mg as of Wednesday. I am feeling tired, which is a potential side effect so I hope this settles. However, I have been doing a lot more lately so maybe the tiredness is due to increased activity. I managed a swim on Thursday without any issues. I know the beta blockers can make exercising difficult if you can’t get your heart rate up.
Dr Silver’s letter is confusing on the maximum dose of Propranolol but I think if this tiredness is due to the drug I won’t be going higher.
Katherine, did you have any tiredness or other side effects from the beta blocker when you first started on it at the low doses or did you find it easy to tolerate? x
I didn’t have any real side effects when I started the Propranolol and after about 2-3 weeks at 160mg I started to feel a difference. I am feeling a little dizzier now I’m on 240mg but not enough to make me want to drop the dose. My headaches have been much better the last two weeks and I’ve done things I’ve not done in 5 years.
I’m a bit concerned I will be trying Duloxetine (Cymbalta) next for my nerve pain and not sure what that will do for my dizzies. I’m away the next two weekends so will wait til after then to start the Duloxetine by which time the Propranolol will have had a chance to settle into my system.
That’s good Kath. It does sound as though it is helping you so worth sticking with it. I just don’t think I would have been able to get to anywhere near those dose levels of the Metoprolol as 1/4 of a pill, ie 12.5mg made me feel dreadful. Fingers crossed that the cymbalta doesn’t interfere with things then. I haven’t started the gabapentin yet. I have a few appts and things I have to do in the next couple of weeks and I want to be able to function so hopefully I will start it in 2 weeks or so as I am preparing to feel very rough initially x
Hi Kathy im also on prop slow release as this is suppose to be better, and nort 10mg at nite, ive been suffering for 3 yrs , 2 yrs on and off with lab and the last yr well not sure, been given 3 differant diagnoises, mav cervical headaches and now chronic tention headaches. Ive been on both these meds for nearly 4 mths and im about 97% better now. My life is vertually back to normal, im back to doing things again, enjoying shopping trips and back to work for the NHS without having time of sick. So glad your doing well too x
@victoria Hi It is interesting to hear that two other expert neurologists believe the diet hasn’t that much to do with triggering migraine. I guess you just have to listen to your body and go with what works for you.
@livelyred. So glad to hear that you are doing well. That is wonderful to hear
@jem and Katherine. Hi you two. Hope you are doing well, got to say you two in particular have been a fantastic. Your stories were the reason I got in touch with Dr. Silver in the first place. So thank you again x
Still doing ok, I am getting some ‘traditional’ migraine headaches from time to time but they still do not cause the horrible nausea/sickness or pain that I used to get. It seems that I am getting less dizzy and getting more of the old headaches!
This is a very positive propranlol post! I’m hoping for the same news soon! Am on 10mg in morn and evening of propranolol at the moment i’m much dizzier but hoping for some respite as i get used to it xx
haven’t been posting much but have still been browsing. Hope you are all doing OK.