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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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