Wow, lost for many years but today I found this website

sfnative · November 4, 2019, 11:36pm

Nathan, my experiences are different than some of yours. First, for me the worst part of vertigo is vertigo itself – the world spinning around me with my stomach lurching, grabbing anything solid to prevent collapsing on the ground, blindly stumbling (or crawling) to a bed or sofa for safety – that’s the worst part of vertigo. Anxiety is only a side effect and given the impact vertigo has on one’s life, it’s a reasonable side effect IMO. In no way do I believe anxiety triggers my attacks.

Second, I suspect you are much younger than me – I’m many years past hard core sports. Yet prior to my symptoms becoming out of control, I was a regular gym-goer. I exercised through major injuries and illnesses, including cancer. I took aerobic and yoga classes, lifted weights, etc. But after experiencing two major vertigo attacks while at the gym, I came to the conclusion that it is an unhealthy environment for me. The bright lights, clanging weights and loud music are difficult for many of us.

Third, like some others here I spent many months unable to leave my home unaccompanied because of the risk of sudden vertigo attacks. Returning to some sort of normalcy was a long, slow process over several years. Through it all I have tried to walk daily, increasing my mileage as my health and confidence increased. I garden and take an occasional yoga class (modified). That’s about all I can manage and I think it’s pretty darned good considering everything I’ve been through!

I agree that regular exercise is important if at all possible, but intense exercise isn’t an option for many folks, myself included. Some of us are too sick, some too old, some too injured, some too busy. If that’s something you can pull off, I salute you! May it always be so! But I’m sticking with my tried and true exercise motto “Something is better than nothing.” Good luck on your journey.

Onandon03 · November 5, 2019, 10:23am

Hi, my fellow MAV Buddy it seems. Very similar experience with this condition a lot of which I feel sure can be accounted for by severity And duration of symptoms. I agree with Nathan that many people, and I’m almost sure they are nearly always the younger people, do get very anxious of the vertigo and that does set up the dizzy/anxiety vicious circle where the anxiety constantly refuels the vertigo. Like you I found the severe vertigo and its accompaniments the main problem always. Luckily, what a stupid word to use in such respect, my many early experiences of vertigo were self contained 72 hour long attacks that would then clear totally so at least I could expect them to go away. Chronic stuff came over a decade farther on. So, no, whatever triggers my attacks it isn’t anxiety. As you say ‘Something is better than Nothing’ every time but agreed, for many, the gym’s a hostile environment. Helen

Hecoso · October 26, 2020, 9:26pm

Hi all! here’s are some thoughts, positive improvements and also some doubts that I would like to share with you today. Hopes this can also help some people who are on Flunarizine now or trying to to quit. I have VM and PPPD
First of all, some context:

I am 38 years old, I am originally from Spain but living in London now.
My symptoms started 8 years ago. For years, I visited all sort of doctors, they didn’t seem to understand anything and attributed my symptoms to anxiety and neck related problems.
I “survived” without any treatment, just coping with dizziness trough acceptance techniques (mindfulness, etc), and keeping doing all I had to do (working, driving, going out…), just pretending “it was all anxiety” and I had to learn to deal with it. Now I know I pushed way too much. Mum is a nurse, I have grown up in a family where everything was fixed with a paracetamol and going to the doctor was quite rare, I learnt to just ignore or dismiss my body, “everything is fine”
For one year the symptoms disappeared and I thought that was it, I had resolved some life issues and, therefore, I was ok, wasn’t I?. But dizziness came back one day. Since that day, I’ve felt dizzy every day of my life.
My Vestibular Migraine was diagnosed 3 years ago in Spain (2017). I still remember how much I cried hearing the ENT doctor finally asking me the right questions (“do you feel dizzy when you are in the supermarket?”…)
I understood that my “headaches” were not that simple, the doctor explained to me how headaches and other symptoms that I had were all connected and had the name of “migraine”, I had been living not listening to my body for so many years.
Treatments: Amy (gave me strong headaches, paradoxically) and then Flunarizine 5 mg. At first it was a big improvement compare to how I was before taking this medication, I felt I had a normal live again for some months.

However, after one year I was still dizzy, I had headaches every month and, even worse, massive side effects: low mood, lack of energy, sleepy 24/7, gained a lot of weight (5 kgs). When I tried to stop taking it, I felt horrible, dizzier and I increased the dose (10 mg). Worst decision ever. I now can see that I stopped taking this medicine too fast.

At the beginning of 2020 I decided to do some changes that I have been implementing during the year:

Diet: no caffeine
Supplements: magnesium 500 mg and B2
Medicines: I have gradually stopped taking Flunarizine winding down very slowly from March and finally not taking any more since mid-August.
Exercise: gradually, during the year, I have started doing very gentle yoga. Now I am exercising 4 days a week doing 2 Pilates classes and 2 yoga classes. Still finding very challenging walking more that 10 minutes without feeling dizzy, confused and very tired.
Awareness: health diary. It has made me see patterns and find out that my migraines always come one week before my period!! They are totally hormone related. It´s really weird that I haven´t seen it before. The dizziness is constant, no matter whether there’s headache or not.

Overall, I feel much better since I am not taking Flunarizine anymore, more energy, I don’t need to sleep so much time, I feel I want to do things  . The exercise is being great, the sensation of getting fit is also amazing, although I am taking it super slowly and being very careful. Doing exercise from home is great because there’s a lot less fear of fainting in front of other people, which is something that used to happen a lot to me when I went to the gym. These are the two major improvements: more mental and physical energy.

Dizziness wise I feel I am more or less the same as I was when I was taking flunarizine, I still get dizzy when I am working sometimes (I am a clinical psychologist), I also feel I can’t think or speak properly, I feel confused when I am on my migraine days.

I think the lockdown has given me a fake sense of improvement. Last Sunday, I walked over Waterloo bridge and It has horrible, I had vertigo and dizziness for 3 hours at least. Ruined day. I can see that I still get this type of days and this makes me worried. The fact that I am now working from home is a relief, I feel more in control, but as soon as I go out I realise that I am still not well.

My doubts now are:

Will I ever live a symptoms free live? Is there actually a “solution” to my problem?
What is the right treatment now? What’s next?
Should I try to not take any medication at all and carry on with the changes I have made? Am I missing any option/medication that could be good right now?
How much of my condition is hormone related?
How important is walking, which I am not doing, for getting better? Exercise is definitely, but I am still avoiding walking.

I am being seen by the team at the Royal ENT London, I guess these are the type of questions that I should ask in my next appointment.
I would love to hear about what you think would be the right questions to ask or next steps based on your experience, etc.
Finding this forum has been a big milestone in my journey with this condition, seeing how many people are going through the same feelings and situations can help so much….
Sending a lot of hope and best wishes to all of you

Helena

Onandon03 · October 26, 2020, 11:26pm

Now there’s a list of questions. I just hope you won’t be disappointed if you don’t get much by way of answers from the medical team because I doubt there are definitive answers to any of those questions. My opinion for what it’s worth. It could well be as the condition is so hormone linked once you have finished menopause good chance it will cease. Women with Catamenial Migraine have good odds in their favour there. Read up on Catamenial. There are specific treatment regimes to cover that type of migraine. Worth researching. Walking is paramount. I was told by VRT body that I had to ask outside every single day. It’s completely different from working out. The outdoors is a special type environment for the brain to have to cope with. I suspect you have gone back through lockdown because if restrictions. Out of practice. I would say walking outside is vital. Read some of my diary.

I won’t comment on your next right treatment or what meds you might be missing because I don’t know. Before you attend your appointment have a think and maybe ask… What condition do you currently think more prevalent? is it still VM Or moving more to PPPD? What dizziness? Vertigo is it or floaty light headedness? Treatments vary.

You have probably got a very good reason but at this point I would be asking myself what’s the point in struggling on without any medication. Why struggle? The aim of preventatives is to control the active symptoms to allow the condition to settle into some sort of remission one might say and you have attempted this before. Why stop now? To prove what? The answers you give yourself might prove a good lead. Helen

Hecoso · October 26, 2020, 11:41pm

Thank you Helen, some interesting reflections here.
I decided to quit Flunarizine because of the side effects, I wasn’t feeling particularly better and the sides effects were getting to a point where I was feeling super low both psychological and physically. I think I need to ask about new options in my next ENT appointment, but, TBH, I am really worried about possible side effects of new medications and the impact this have over my life, work, etc…
Walking is definitely something I have to do more, no doubt. I am going to take a look at your diary now
Thanks sooo much!!

ander454 · October 27, 2020, 4:40am

Hi Helena,

I understand this question very well, I thought I was an impossible case for several years. But I have recovered, mostly 100% now although if I mess up or change my meds too quickly I start to relapse a bit.

I had a similar experience to you, they put me on Paxil for anxiety / depression long before I even had the MAV diagnosis. It was hard to get on and get off, but I was convinced I had to get off of it because it wasn’t really helping. That was surely the hardest thing I’ve done in life… so after that I was really AGAINST medication. After a year of being unmedicated I realized I was getting nowhere despite a perfect migraine diet and long 5 month vacation to reduce stress. So I started trying more medications and I now believe it was the only way for me to get better.

Since you’ve tried a couple antidepressants already I would recommend trying a different class of medications, such as a beta-blocker like Propanolol or a calcium channel blocker like Verapamil.

Good luck, just keep trying new things and you will find something that works!

Erik

Onandon03 · October 27, 2020, 12:40pm

Er, Helena has just come off Flunarazine which is a CCB. It will be interesting to hear what the Medical Team do suggest. As a person who takes it I would not hesitate to suggest Propranolol to anybody with a main symptom of migraine headaches or even silent migraines but I don’t think it’s much of it when it comes to pure vestibular stuff like dizziness.

Hecoso · October 27, 2020, 12:48pm

this is so good!!!

Hecoso · October 27, 2020, 12:59pm

Yeah, as @Onandon03 was saying, the medication I’ve been taking is Flunarizine, a CCB, I think you might have read fluoxetine, which is an antidepressant, isn’t it?. I am now trying to see if just with lifestyle changes, exercise and supplements I can still life a normal life, but as you said, maybe I need to just explore other options. I am scared of the side effects of medications, but I will have to accept it as an option if I see I am not getting better…
I am waiting for my next appointment with the NHS, my experience so far is not too bad, but I´ve been seen by different doctors every time (phone calls) and last time I had the feeling I wasn’t having the proper follow up for my case, no one offered any other medication or alternative other than lifestyle and supplements. Do you have the same feeling? I don’t really know if I am being too passive or wether I should be more directive on my next appointment…

Hecoso · October 27, 2020, 1:09pm

this is what I still don’t understand, Helen, how do we know when the problem is just vestibular (dizziness) or the cause is the silent migraine, hence, should we treat the migraine or just focus on the main symptom, the dizziness? I´ve been on calcium channels blockers as preventative for 2 years and the dizziness has been there all the time, we were then treating the migraines but the most limiting symptom for me was still present. Then they told me about PPPD. Well, how do we treat PPPD? is there a clear limit between one and the other? I will definitely ask my doctor about propranolol.
I can see here how much experience and knowledge you guys have after researching and reading so much and all the medical appointments. I am trying to read and understands but there are still so many things about this condition that I still don’t get. I know every case is different, but do doctors really know how to tackle these conditions?

Onandon03 · October 27, 2020, 1:46pm

This is typical for the NHS generally. You need to go private to get anything much more. Erik won’t know. He lives in the USA. The UK NHS barely even recognises the existence of VM. Many doctors have never heard of it. Most don’t acknowledge VM even exists, my own included. Over those 12 years I must have seen at least six different doctors in my own practice and not one recognised the condition at all. My current doctor only recently got to grips with the use of preventives in relation to migraine. My PD will tell you I was misdiagnosed for over 12 years. One word of warning don’t push your Own GP too hard. Assertive is quickly taken for aggression and you will be asked to move on and find yourself another doctor.
Afterthought and perhaps not kind to second guess really but I would suspect locally in NHS if they see recognise the condition and the Flunarazine treatment they could well have read too much significance into it and thought 'ah well she’s not benefitted from specialist prescribed drug, she must be a complicated case with nothing further we can do. I doubt they would realise that it’s in general use in Europe and not considered the special top of the range and only licensed to top specialists prestige stuff it is here. Away from the top London based teaching hospitals I doubt many medics would know that much about what happens in other countries medics wise. With that aspect we on here see a different perspective.

Onandon03 · October 27, 2020, 3:12pm

In a word ‘No’. I have never been given a proper diagnosis. The neuro-otologist I saw privately for another condition did just explain my symptoms as ‘Migraine’ and that was all he said apart from to take preventatives. I have twice since seen saw a Migraine Specialist Neurologist who said the only way to find a suitable preventative is by trial and error. Neither would she give me a definite diagnosis. She said my condition is on the migraine spectrum. All in my PD.

Something the neuro said which might help you was all my symptoms were ‘migraineous’. Therefore by my reckoning my vestibular attacks were what some call silent migraine (vestibular attacks with no obvious migraine headache but virtually all other symptoms) and she treats the migraine. She doesn’t appear to distinguish between migraine and VM. The only time migraineous vertigo was mentioned was in a letter post consultation to my doctor when she wrote that Valproate was good for migraineous vertigo. No connection was never mentioned to me in consultation.

An extract from the consultant’s letter to my own GP reads

‘Helen does appear to have a migranous background particularly with the sick headaches in childhood. … and these episodes with a heavy head, photophobia and phonophobia are all probably migraine equivalent. Her current imbalance is probably partly due to migraine but also compounded by lack of compensation due to her current reduced level of exercise. I have advised her to slowly get back to going for short walks every day’

VM is a diagnosis of exclusion so prior to making such a diagnosis it is usual for the patient to have various other tests such as a hearing test, balance tests and an MRI scan of the brain to rule out as much vestibular as is possible else although my understanding is that imaging is still not advanced enough to pick up some other conditions. Only once other causes can be ruled out can the symptoms be attributed to VM the root cause(s) of which are still very much unknown.

Doesn’t appear to be much clear about it at all. Much like VM its very existence is doubted by many. You will find loads of other threads on here relating to PPPD and I would suggest you research and reach your own decision. I think you are more likely to recognise yourself in the symptoms than a medic who meets up with you as a One Off. Suggest you read Matthew Whalley. You should have much in common. He’s a Clinical Psychologist too. He has written a paper on PPPD you should be able to relate to. There’s a strong emphasis on the type of dizziness involved from what I recall.

Hecoso · October 27, 2020, 6:49pm

reading it!! thank so much for your time, Helen. You always have an answer for all of us and this is amazing. Hope you are receiving here as much as you are giving.
Helena

Hecoso · October 27, 2020, 6:50pm

wow…I can’t believe you have been underdiagnosed for 12 years… hope you are feeling better now. I guess you have learnt a lot after so many years of suffering and researching on this condition…

Katy · October 28, 2020, 1:27am

@Hecoso Welcome to the dizzy train! I have had my official diagnosis (VM & BPPV) for less than 2 weeks, so not sure I can be of any assistance. I already had a scheduled ENT visit before I got my diagnosis, so I was able to get the Epley maneuver which helped a lot with the dizziness. The neuro put me on Ami & Ubrelvy. I was already on Cymbalta and have been for years for depression. So far, I still have headaches, but the positional vertigo is much better. I know it will take time for the meds to work and if they don’t, I will have to try something else. I struggle daily with extreme fatigue and sleepiness and call in to work at least twice a week. So far, they have been understanding, but I am not sure for how much longer. I haven’t been able to get into exercising or a lot of the other stuff everyone on this site has suggested, but I am hoping I will be able to eventually. Right now, I just want to sleep all the time, which considering I had chronic insomnia, it is nice to be able to sleep for a change, but now it’s affecting my job. I have to be on the computer all day for my job which has been a struggle. I keep the lights off and adjusted my computer screen, but it doesn’t help much. I am at the end of my project, so it’s a slow time which is a blessing, but even so, it’s hard to sit at work and pretend I am working just to get a paycheck. Finding this website shortly after I started having symptoms was a blessing and now that I have a diagnosis, it is even more beneficial. There is so much knowledge to be found here and having support from people that know exactly what you are going through has been wonderful. I am glad you found us and hope you find the site beneficial as I have.

ander454 · October 28, 2020, 2:41am

Yep, that’s what I was thinking, my mistake. Yes, I think it makes sense to see if lifestyle changes can work, sometimes that’s all that people need.

My Neurologist has always offered me new treatments. I usually resist them for a few months and then eventually I try them…

I’ve cycled through many migraine medications and my experience is that each med gives an improvement (for 3-6 months) but the improvement either stops after some time or I develop side effects that I can’t tolerate. So, it may be wise to consider moving to new medication (such as Propanolol) or add a medication on top of the CCB that you currently have, like maybe topomax or nortriptyline. Ask you doctor of course what ones can be taken together.

I think its more of an art than a science, but at least the basics of treatment are known. Whether you have PPPD or MAV, treatments (and medications) are basically the same, so pick one you believe in and just keep moving forward. You will never be able to fully understand these conditions because the doctors don’t either.

Onandon03 · October 28, 2020, 10:00am

It came as a surprise to me the day it eventually dawned that I realised medicine itself is an art rather than a science. Guess I’d never really given it any thought previously. I find I can’t agree with you however that the treatment of the two conditions are basically the same though. Having read Matthew Whalley paper on PPPD I found very obvious differences and I can and will bump another thread which might help @Hecoso and was my other source for thinking that way. Helen

Hecoso · October 28, 2020, 7:38pm

Hi Kate, I can TOTALLY relate to the feeling of tiredness and being sleepy ALL the time, to the point I think it was as bad as being dizzy all day. Thankfully, this has changed after coming off the medication (preventative- calcium channel blocker), maybe this changes once you get more use to the medication. Hope you can find your own way to feel better, there is a lot of good advice in this forum. Sending my best wishes to you!

Onandon03 · October 29, 2020, 12:34pm

Helena How you doing with all that reading. Reached anything like a conclusion. If so please don’t keep us in suspense. Helen

Hecoso · October 29, 2020, 1:03pm

Hi! thank for telling me about Matthew, Helen. I emailed him yesterday and he replied today. Unfortunately he is not seeing new clients now and he doesn’t know anyone who offers therapy privately, but he was super nice and didactic. He has told me that there’s a level of gentle exposure therapy that could work for PPPD, although he insisted in how important is to make sure that the PPPD diagnose is right and reliable before starting psychological therapy. His paper is indeed one of the best things I have read about PPPD so far, I am going to literally study it and see how I can apply it to myself somehow. I would love to find someone that could design and lead these exposure / eliciting exercises for me because I know there’s a level of avoidance in me and I am not sure that I am addressing it properly, but it seems that this type of proffessional is not easy to find at all. I am a clinical and health psychologist so maybe I will end up having to specialize in the treatment of these type of conditions, I would definitely like to help more…who knows!