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8 Months of this so far..

Hi All,

This website has been a great find for information and knowing that other people are struggling with the same condition. In a weird way that is comforting!!

This all started for me in October 19. A sudden weird moment of dizziness which has never gone away plus additional symptoms. I have suffered from a strange lightheaded/dizzy feeling, severe neck pain, muffled hearing, mild tinnitus, braing fog, tight throat feeling/runny nose (allergy)??, fatigue and probably more! Generally feeling down due to this isn’t helping.

I was lucky to get diagnosed early and was given Nortiptyline. I lasted a month before the side effects became to much… looking back maybe I could have lasted longer. I am now on propranolol at 50mg per day and it has helped remove the muffled hearing, tinnitus and I seem to have a few good days here and there. This is a low dose I know. Any prop success stories that I can be linked to?

I have tried Magnesium but it seemed to make me worse? Is this common and I should stick it out?

I had 3 weeks off work but been back full tiem for 3 months now and I can just about do what’s needed but some days can be a struggle. Mixture of desk based/warehouse…

Any advice appreciated!!

Cheers

Hi and welcome. I am as near a Prop success story as you will get currently on here. There have been others all since now moved on. You can read my PD for more detail. You don’t say how long you’ve been on 50mg which, as you very rghtly say, is low dose for Propranolol. It’s a very effective drug but does tend to take it’s time to really work and reaching an effective dose is key. It is actually weight dependent although few medics acknowledge this. 160mg daily is UK top recommended dose which I understand is tops GP can prescribe without a consultant’s instructions for migraine however other countries take that to 240mg. One consultant recently advised another poster on here 200mg is often needed to see good results. Perhaps you could discuss the possibility of increase ith your medical adviser. Some prefer to add in other drugs depending on comorbidities. A lot prefer not to have younger people on higher doses of beta blockers due to the probable exercise intolerance side effects.

Thanks for the reply!

Ive been on prop since mid february and ive been on 50mg since march. Like i said definite improvements but for some reason im reluctant to go to a higher dose. Doc wants me up to 80mg. Id say im at 80% on average but can have 50% days and 90% days.

Ive basically stopped exercise since this started and its something ive come to terms with but its taken a part of my life away. I could play high intensity football for 90 mins but now im terrified it sets of an attack or im dizzy for days. Like you say prop might not allow me to high intensity sport?

Fyi im 30 years old with a previous history of aura migraine when in my teens.

Doctor is correct. Propranolol range for migraine is 80-160mg in UK. Propranolol might stop the football but MAV might too. If you tolerate 50mg I’d say go up or get off having first sourced an alternative from the doctor. Propranolol has good reputation but you do need an effective dose.

Thats me up to 80mg. Everything was going fine but had a couple of bad days of ear pressure, popping and muffled sensation. Has made me feel pretty spaced out. Got an ENT appt next week via telephone so will see if its a case of continuing and upping it or maybe trying something else with it or seperate.

MAV symptoms change constantly. Ear fullness for me was one that appeared later. If there’s one constant thing about MAV it is that it keeps changing and that will continue for a long time. I have no idea how you imagine recovering will be but please don’t think, even on medication, that symptoms will at some point just suddenly stop. That isn’t going to happen. Propranolol does sometimes stop classic migraines dead in their tracks. I personally know people who have experienced that. MAV is a much more difficult nut to crack. We are talking months rather than weeks here. At a guessimate maybe 6-8 weeks before you start to see some reduction in symptoms on Propranolol. It’s not the fastest worker from my experience. Amitriptyline often shows improvement within 4 weeks but whatever you take nothing is going to shift it suddenly and completely. I hope your call from ENT proves helpful.

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Very similar symptoms here - strange chronic lightheadedness, neck pain, brain fog, fatigue. Also the first magnesium supplement I took made me drowsy and lethargic and I couldn’t sleep. So experimented, and found a better one, now take it daily and feel slightly more relaxed. Maybe try a different type? Glycinate?

Can’t advise on medication, I don’t take any. Re. exercise, you mention that you’ve stopped exercising. What happens when you exercise? I think regular exercise is absolutely key here, but possibly gentler than what you’re used to - so maybe no high intensity football (yet), but instead an hour’s walk every evening after work? Have you looked into changing your diet? It’s all rather frustrating, isn’t it?! But good news that you’re still able to work, and you have your diagnosis, which is more than I’ve got (next appointment in August… with a doctor who “doesn’t think there’s a migraine component” to my symptoms, so…). Good luck!

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Its strangely nice to know someone else is going through this misery… that sounds a bit weird but you know what I mean! I have a couple of types of magnesium and think I will try again soon.

Exercise seems to trigger the spacey feeling. Its like my brain cant cope with the movement. I go for a walk most evenings with my 2 year old daughter and they are a great way to clesr the mind.

Strange you havent got a diagnosis. ENT after a 20 mins discussion said 100% vestibular migraine. Hopefully you can get a confirmed diagnosis.

Think the hardest part at the moment is staying positive. Ive defintely been struggling with depression and its been hard to admit.

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I know what you mean. I get the “spacey” feeling when walking too. Usually just at the start, for the first few minutes after I’ve left the house - as though my brain is adjusting - then it begins to calm down. Usually, the longer the walk, the calmer my head feels. Before COVID I did a 15 mile walk (from London, through Wimbledon Park, to Kingston), and though it gave me a cold, it also gave me a massive reduction in overall symptoms (that’s lasted to this day).

Yes, well… “PPPD” is my diagnosis, but to me that looks like a subtype of migraine. You can find my welcome post on here, which details all of that. Going to push the guy on the migraine thing when I next see him.

Yes to the depression. And frustration, and anger, and lots of other things. There’s nothing really to say that makes it better, is there?! At least those walks with your daughter sound a lovely way of clearing your head. Lots more of those! :slight_smile:

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Check out the walking threads on here. Walking outside is so good both physically and psychologically. Medically acknowledged fact. Exercise is a strong balance stressor more particularly the heavy gym-based stuff.

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All part of the Grieving Process. You are grieving life seemingly lost. Actually that is temporary but I appreciate it doesn’t seem that way at this point. The grieving stage will eventually pass. Don’t dwell on all those things you can’t do. Just concentrate on those you can and constantly Talk Yourself Up. You need to reach a state of Acceptance. Doctors use the phrase ‘We are where we are’ and that makes much sense. Once we can accept our current health restrictions frustrating as they might seem it is possible to move forwards.

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@Onandon03 You are so right. For the first 12 months of feeling ill, I took all the anger out on my body and blamed myself rather than thinking, perhaps my body’s trying to tell me something and slow down!! Now that I’m 18 months in, I’ve finally accepted this condition and that this is the new me for the time being. I won’t lie and say I don’t get spooked by my symptoms from time to time but I now have a better understanding of what’s going on and plenty of distractions to keep myself from falling into the anxiety trap. I love walking and find getting out every day one of the best things I can do. It definitely resets the mind and calms the soul!

Allyson

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Hello All.

Last week i felt pretty good. At times didnt even think about it. Then boom Sunday afternoon my right ear suddenly does this strange long beep sound and thats me. Days of muffled ears off and on. Ive had a constant small aura in my right eye that wont disappear. Has anyone had this before? Had a feeling that the right side of my face was a bit numb also. All part of the migraine

Im on propranolol 80mg per day and im wondering if I need a dosage increase??

Hope everyones having a good day​:grinning::grinning:

Cheers
Greg

Sounds like that might be a good idea. Of course no preventative is likely to give total protection from attacks. Doctors deem the preventative strategy a success if it reduced everything, attacks, severity and frequency by 50%. That said once people find a tolerable drug at an effective level they do tend to do a lot better than that. A straight migraine friend of mine stopped all here it seems at 120mg. Propranolol dosage is somewhat weight dependent and as I have mentioned to you before 200mg is often an effective dose according to some neurologists.

The definition of effective dose is one that contains most symptoms for most of the time and this needs to be achieved in order for the preventatives to be successful in bringing about some long term remission.

Sudden blast in ear. Yes I have experienced that a couple of times. Seems it might be linked to some sort of ongoing change. Bearing in mind change isn’t always for the worst.

Aura in right eye? Not exactly sure what you mean. Please detail.

I think as mentioned Im just not at an effective dose yet but the current dose is helping. I don’t really feel any side effects which is good. I will get in touch with the docs next week.

The sudden blast is horrible and I just know it signals a bad few days ahead.

Like the aura experienced during classic migraine attacks. There is just a tiny wee spot in my vision still lingering. Wouldn’t say it’s anything more than slightly annoying but I wonder if it’s just the attack going through me and taking time to tail off.

I actually said to my wife on the way home in the car on Sunday, wow I feel great and have done for a while…then boom soon as we got home it happened. Typical!!

Ah you too have discovered the Jinx Mechanism. Never fails. I did the same with the strength of my Broadband signal recently and next day the modem flashed so many colours so often all day I more than half expected ET’s space craft to land in the garden.:grinning:.

As to the speck in your eye. Sorry can’t relate to that one at all. If it’s not your own usual occurrence mention it to the doctor. Propranolol has ‘visual issues’ listed as a known side effect although I don’t remember anybody having issues with that on here.

Feel like I jinxed all the good work!!

Ears are still feeling off today. Popping etc. Yay.

Its so hard to stay positive at times and my poor partner must be sick to death of me moaning all the time that I don’t feel 100%. I think I come on here as I know it’s the one place people truly get me. Otherwise as much as I know everyone is trying to be helpful I just get annoyed having to pretend I feel fine when inside I feel like I have lost a part of me.

Had a tough few days so thanks for listening needed a place to vent.

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Oh never pretend. That’s not fair on you? Best not to moan too much but do let family particularly know if you are feeling off. I don’t believe in bothering to try to explain the condition outside immediate family and very close friends. It will take for ever and you won’t really succeed but family is different. You may well be in this for the long haul so they do need to know.

Yeah your right. Migraine is a major family problem but this type is very different and it seems no matter how many times i explain, the not getting a headache part still confused everyone!

Helen ive noticed you mention NHS grampian a few times on posts? Im also from the aberdeenshire area.

I’ve had issues with the right side of my face feeling tingly and numb. My neurologist says it’s “normal for a complex migraine condition”. It’s not a fun feeling though haha but none of this really is :woman_shrugging: