Thanks so much wtc, very sweet of you indeed , yes I actually only wanted to know if there was an adjustment period with propranolol that was it. Only because in the information sheet it doesn’t say anything like that , unlike the nori leaflet which mentions the 6-8 weeks that it takes or you to see the effect of the drug. So if you are going to start propranolol too we can support each other through it
Take care xxxx
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Thanks Anna, that would be great! i’ll let you know when i’ve started as i’m still tapering off my previous drug. I think we’re a bit different as migrainers with meds too, so sometimes the doctors aren’t even aware of the fact we can get dizzier on starting new meds. I think the adjustment is only ever meant to be about 2 weeks, 3 weeks max. So don’t worry. Just battle through this bit and you’ll come back to your bassline or EVEN BETTER - better!
Anna - how’s it going on the propranolol? any improvement?
WTC - people should be allowed to share their experiences both positive and negative here. You’re right different drugs help some people and not others, however if not many people here have said they were helped by propranolol then maybe that is a true reflection of the position. If there are people here who have been helped by propranolol and are not sharing that information then perhaps they should be criticised more than those who have responded but who did not have a good experience.
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Jem i wasn’t at all criticising any of you for sharing a negative experience, you are ofcourse, entitled to do that. I just think it would be best done on another thread than on this one. I am only trying to help everyone and to reassure Anna that this could be the drug for her. I’m sure you know that if you hear a million negative stories about the drug it is alot more daunting and scary! That was my only point… as i felt alot more worried after reading all the posts.
In the same way you think what you believe, surely i should be allowed to think this too?
I don’t want to seem like i’m having a go at all, i get on with you and you have been a great help to me, and i am eternally grateful. xx
Guys thanks for all the comments this is all that I am asking -
Those of you who have taken a beta-blocker did you feel more off balance when you FIRST started taking it? I am well aware that this condition is very hard to treat (I’ve had it for 2 years now) & that we need to try all different measures in order to feel better. I feel as though my dizzys have increased since I started propranolol.
Thank you
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Hi Anna, i think this is normal for many of the drugs we have the option to try. It happened to me with amitriptyline at first xx
Thanks Jem for being sensitive to all people on this thread.
Anna, like many things in life, only you will know what works for you. Like you, propranalol was prescribed to me, I tried it, and It didn’t work for me; though I do take half a pill as needed. Everyone here is on your side, wanting only the best for you. This is after all a forum, a place for honest open discussion. As much as I’d like for it to be (and believe me, I deeply wish for it to be), this is a gray condition rather than black or white; there are no easy answers, no one-size-fits-all. A year and a half later, I still don’t have a diagnosis…MAV is acknowledged as a possibility by the ENT and neurologist, but when pressed, no official diagnosis; I think they’re still in the ruling out process. Thanks to this forum, I was able to find a neurologist that would listen (as I cried through all my appointments that first year). This was also the one and only place that gave me the answers I needed most: a basic explanation, a diet plan, a listening ear, meds to consider (the most confusing of all topics), “normal” symptoms, etc. I also appreciate that this is a research-driven conversation. Please do continue to share your experiences, good and bad alike. It’s all for the best and we learn from it all. That’s how we help each other out.
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Hi Vandaml, i hope you see that i was also trying to be sensitive to someone on the thread. I was not saying that you were not allowed to express how you feel - we are all here to express how we feel whether negative or positive. I just don’t think it is nice when someone asks for reassurance and help for everyone to write about bad experiences on that particular thread. I hope you see my point, and i hope you are currently doing ok. I am so glad you are closer to a diganosis and wish you the best x
Hi as some of you may know, I have just been prescribed propranolol from my GP as the nori side effects were getting too much. So I am on day 3 now and I have increased dizzy’s. You can guess what I am going to ask next - is this normal? When I tried to ask the GP about vm I don’t think he really had a clue - so those who have taken it - did you get an increase when you first started it? I’m hoping it’s similar to nori this way! Many thanks xxxx
WTC - thanks for clarifying what you meant, it did come across like you were saying people should not say anything negative about a med in case it puts someone off taking it and that would either have meant nobody would have replied to Anna or those that did reply (except lorcalon) would have had to lie and pretend their experiences were positive. It wasn’t my intention to scare anyone at all, just to be honest about my own experience. I am really interested in anyone who tries beta blockers because I was prescribed Metoprolol as a first line med and then was disappointed when it made me feel so bad and I want to be sure that this wasn’t a normal reaction and I didn’t give up on them too quickly. The ‘Heal your Headache’ book says that beta blockers can exacerbate symptoms of fatigue and depression so that may be why I had a bad reaction to them whereas someone else who does not have those symptoms may do a lot better. When I started the Metoprolol, I struggled to find many people here who had been helped by beta blockers, maybe one or two, but most people said they did not find much help from them which is why, when you asked for positive Propranolol stories the other week, I told you about that other website Labyrinthitis.org as I knew there were a few success stories on that site but I was not aware of many of this forum. Rather than trying to scare anyone, I was just letting people know that they aren’t alone in experiencing worsening symptoms when starting on a beta blocker. I hope you and Anna are both Propranolol success stories and then that will give more hope to others in the future xx
WTC - thanks for clarifying what you meant, it did come across like you were saying people should not say anything negative about a med in case it puts someone off taking it and that would either have meant nobody would have replied to Anna or those that did reply (except lorcalon) would have had to lie and pretend their experiences were positive. It wasn’t my intention to scare anyone at all, just to be honest about my own experience. I am really interested in anyone who tries beta blockers because I was prescribed Metoprolol as a first line med and then was disappointed when it made me feel so bad and I want to be sure that this wasn’t a normal reaction and I didn’t give up on them too quickly. The ‘Heal your Headache’ book says that beta blockers can exacerbate symptoms of fatigue and depression so that may be why I had a bad reaction to them whereas someone else who does not have those symptoms may do a lot better. When I started the Metoprolol, I struggled to find many people here who had been helped by beta blockers, maybe one or two, but most people said they did not find much help from them which is why, when you asked for positive Propranolol stories the other week, I told you about that other website Labyrinthitis.org as I knew there were a few success stories on that site but I was not aware of many of this forum. Rather than trying to scare anyone, I was just letting people know that they aren’t alone in experiencing worsening symptoms when starting on a beta blocker. I hope you and Anna are both Propranolol success stories and then that will give more hope to others in the future xx
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Thanks Jem, and i loved your post on my thread about postive prop stories - it was great advice
Hi Anna31,
I just started propranolol a week ago. I started with a quarter of the dose I was prescribed (I was prescribed 20mg 2x per day, so I split the pill in 4 and just took a quarter twice a day to start). The side effects have been mostly fatigue, but I also find it relaxes me without the dizziness/dopiness of a benzo (at least initially, I found though the relaxing effects aren’t happening so much any more). I’m now up to taking half a pill 10mg twice a day, as I found the side effects wore off quickly (unlike the topamax that I struggled and struggled with). I’m still experiencing dizziness, but I do feel a tiny bit better (although part of me wonders if this isn’t due to the relaxing effects). I found that when I increased my dosage I noticed the most side effects for about two dosages and then it levelled out again. I hope this helps, good luck and msg me if you want to discuss our experiences with propranolol.
Ellen, thanks for your reply, it is good to find someone going through things at the same time as you isn’t it. So I am on 10mg ,3 times a day. I started last Thursday (14th) , I have also reduced my nori from 75mg to 50mg as the side effects were too much at 75. I have noticed since Sunday that I have felt more off balance than normal. I’m hoping it’s not a backwards step from coming down on the nori but more an adjustment to the propanolol or a head cold which started last week.
I think I will give it another week and see if it calms down, if not I may be forced to up the nori again. X
Hi Ellen, that’s good to hear! I’m almost off my amitriptyline now (Anna a smiliar case to your nori - but i have to get down to 5mg before i start the prop) - i’m also only starting at 10mg in the evening, then increasing to 40mg in the evening! Not 3 times a day for me… weird!
Just wondering how you are both doing? WTc - how’s the reducing of the nori going?? I am more giddy still but not sure if it is the reduction in nori or the adjustment to propranolol - I will give it until next week. I have deceived to take just 20mg at night & nothing during the day now xx
Anna, is it just increasing your dizziness or are you feeling other side effects too? I felt really tired and depressed on Metoprolol and I wondered if that is normal in the early stages of a beta blocker? x
Yes I have heard it can make things worse at first so if you can then worth trying it for a bit longer. I am hopeless when something makes me worse I just want to come off it right away which I know isn’t good. You can then tell Dr S when you see him and get his view on what’s best x
Just wondering how you are both doing? WTc - how’s the reducing of the nori going?? I am more giddy still but not sure if it is the reduction in nori or the adjustment to propranolol - I will give it until next week. I have deceived to take just 20mg at night & nothing during the day now xx
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Hi Anna, i’ve actually been feeling alot BETTER since reducing my amitriptyline dose… haven’t started the propanolol yet - will do in about 10 days once i’m down to 5mg of Ami… Sorry you’re still feeling more giddy - give it a good 14 days to adjust xx
that is so strange! maybe your body really doesn’t like it? strange in a good way of course! i am flying on Thursday so am really hoping that i make some improvement before then as flying when you are feeling crap sends this junk into madness!!! it will be interesting to see how you feel as you get lower & lower doses. x
I think amitriptyline and i were enemies and not friends! I am worried as to how i will feel when i get down to 5mg though! but it’s hormonal time now, so hard to tell whats drugs and whats hormones. Oh come on propranolol and make me better! i need to get back to life!
Hi, thought I’d drop in :)) I am pretty new to all of this. I have been suffering since January, original dx labrynthitis. Cut a long story short I am now one of Dr Silver’s patients.
I am also taking propranalol. I started off on 80mg and have slowly been building up. I am now planning on upping the dosage to 240mg after taking 160mg for the past couple of weeks. I have experienced very few side effects. The only thing I would say is that on 160mg I am getting that faint feeling when I stand from a sitting position more regularly. However, dr silver says that this does not contraindicate use of propranalol.
I am happy with the progress I am making. My anxiety was sky high when this all started which was definitely exacerbating my symptoms. After taking propranalol my anxiety has massively decreased. I do feel better than I did however I can’t honestly say whether this is because I am not so anxious. It’s a tricky question to answer! I am almost frightened to say that my symptoms are improving when in retrospect I do think they have. I don’t notice the rocking sensation quite as much and when I get an intense dizzy spell it surprises me. Well every minute I was experiencing those intense dizzy spells so I really must be improving! Dr silver says that it will take 3/4 months on the highest tolerated dose to expect to see results. I am happy to stay on this drug and give it a good go You mentioned increased dizzies at first, I was feeling so rotten at the beginning of all this that I honestly couldn’t say whether increased dizzies were down to the medication or the MAV!
Anyway, hope this has helped a little. I am currently talking to a fellow Dr Silver patient who is trialling this drug. I wouldn’t wish this MAV malarkey on anyone but It is very helpful and comforting to know that there are people who are going through the same thing at the same time. This forum has been fantastic for me So keep us posted about how you are getting on. I will be posting regular updates too. Let’s hope it works well for all us.
Kathy x x xx
Funnily enough they do say insomnia can be a side effect of this drug. Quite unusually I have woken up and am posting here. It’s 1.30 in the morning!!! Hope this isn’t to be continued haha!! I’m sure it’s a one off
Wow Kathy- that is fantastic news!! So great to hear a positive experience on propranolol and interesting that you are on such a high dose. It sounds like many times, people don’t go up high enough perhaps to feel the benefits. I only got as high as 120mg.
I do wish doctors would encourage people to stick it out/go higher if not suffering ill side effects.
Good for you.
I am only on 40mg for blood pressure and am thinking about increasing it to see if it helps at least with my stress levels.
xxx