The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Another bad day


#21

Sorry to hear this Kirsty.

But take our advice: this thing unfortunately has a habit of sticking around for a long time so I would urge you to start fighting it in earnest and get out the house however uncomfortable you might be to begin with. Being out does wonders for your anxiety and is excellent VRT.


#22

Hi James, yes I completely understand that. Do you think a little short walk somewhere will be ok for me even though Im unsteady? I know not to push it and go in the car unless I want to be completely bed ridden just yet. :expressionless:


#23

I used to go for hour long walks every day. Usually in the morning with the best natural light. The first 20 to 30 minutes were uncomfortable but it gets more comfortable the more you walk.

Find nature. It’s very life affirming and fights the depression.

I have a canal next to my apartment with lots of different kinds of birds and ducks. There’s even fish! I would take a camera. Every distraction is a blessing.


#24

@turnitaround that sounds delightful! Because im having some kind of relapse at the moment, when I feel well enough I guess I could go for a 10 min walk and see how it feels. Thank you for your tips James they are much appreciated. I lm so anxious to over do it that I end up just staying in and that leads to feeling even more useless. You never know maybe it will lift this awful head? :thinking:


#25

I doubt you can over do walking but everyone’s mileage varies.

Some people take walking sticks. I would advise against them unless absolutely necessary. You want to walk as normally as possible imho.

Once I was a little better I started running and that’s fantastic for fighting anxiety and the feeling of being useless.


#26

Great, at the moment I just have a tolerable migraine so may manage a walk later on this evening. :grin:

I guess it depends how you feel as to what you can do I am a Personal trainer so often over do it well not for a while since I havent been able to walk on the treadmill let alone run :running_man:‍♂ :roll_eyes:

Ill wait until I can turn my head without it feeling like my brain is turning the opposite way to what im looking at!!

Thanks James x


#27

Yes if you have strong neurological symptoms it’s tough to do anything!


#28

I would imagine your current heightened symptoms could well be result of the Amitriptyline as much as anything. If you are light sensitive and having visual vertigo be very careful outside as the light variance can increase dizziness. The advantage of using a walking stick/poles is that it can give a struggling brain an extra ‘feely’ contact with terra firma. The migraine specialist neurologist I saw said to take short walk outside every day. It is certainly possible to overdo walking when acute. If the increased symptoms last more than a short while after returning indoors, that’s too much and could knock balance out completely. As a personal trainer no doubt you are observant and will know the signs. It’s the ‘listen to your body’ syndrome. Only you know how far it’s safe to push yourself on any given day. Helen


#29

Hi kirsty, sorry to hear its been another hard day, unfortunately we tend to get quite a few of these. To get out walking my neuro told me it was essential even tho it’s been challenging as if I do a lot and walk fast I feel like I’m walking on a rocky boat. To ensure I could do this I used an big umbrella as a stick to give me support and it helped a lot, I felt steady and it grew my confidence in my own ability to push thru the wobbly walking. I still use a stick to help me get a daily 3k walk done, some days better than other, whilst meds improving everything else this is one area I’d like to see more improvement but it will come, I need to be patient. If you can at all, find a big umbrella or borrow one and try get out tomorrow, so good for your migraine and your mental health. Like James I walk in a peaceful area surrounded by farm animals and occasional tractor, it’s lovely to get out. Sleep well tonight, tomorrow is a new day and I hope better for you xx


#30

Yel, you certainly don’t want to walk next to busy traffic. Not with visual vertigo. I remember doing that one Christmas Eve, and nearly fell into the road. It made me so dizzy, I would never dare walk the canal path with MAV for fear of falling in. I was told by VRT therapist to always go accompanied in case, however not always possible. Neurologist told me walking outside aids compensation. It certainly lifts the spirits but it’s best to stay safe. Helen


#31

Absolutely agree Helen, I can’t do the roads at all with cars still, like you got awful fright about 2 years ago so this is why I do my quiet route now,much better and safer :blush:


#32

@Onandon03 Helen thank you for your insight, i agree with you, I cant imagine me being able to walk anywhere near the road well certainly not today! My tummy is totally sickly with any motion at the moment. Its interesting that a youve all had advice from neuros about walking, mine has never mentioned this to me. But im definitely going to go on a little walk tomorrow, I may feel dreadful but I will wait until I have a least some balance.
@nin Hi Elaine - thank you for your reply.
The umbrella idea is fab! I do have a rather funky one I could us :grin::umbrella: whilst im having a rubbish time at the mo there are times during the day where I have a period of calm and normality.
Just hoping it will pass soon… I downloaded some meditation apps earlier and found them very useful :blush: I will keep going with the Ami as the side effects im having are mild - dry mouth, tingling.

Thank you to everyone for your kind and informative words :two_hearts: xx


#33

Neither neuro I’ve seen gave me management advice. The neuro-otologist only gave diagnosis and told me to take preventatives. The migraine specialist one years later prescribed upping my med dose, ensuring I ate a ‘balanced’ diet and the daily walking. That was all. Later in response to an email she told me no need to restrict caffeine or follow migraine diet just add in further meds, Helen


#34

@Onandon03 Ahh I see… so you dont follow a migraine diet? I was looking into it and the caffeine restriction. Surely it cant hurt to try, alongside meds of course. :thinking:


#35

Defo drop caffeine as much as possible.


#36

No, I didn’t thanks to that neurologist. I was thinking about trying one because I’d been medicated for more than a year with little success, well I was at about 50% maybe which is why I sought assistance from a second, migraine specialist neurologist. Migraine Diet wasn’t mentioned in consultation, hence the later email. She doesn’t subscribe to diet or caffeine restriction but upped my Propranolol and suggested if that didn’t control it to add in Sodium Valproate (anticonvulsant) as next step. Over a year later, still wishing to avoid additional drugs, I decided to try Caffeine Restriction and John Hopkins Diet anyway, and have written that up as thread ‘Caffeine Restriction and Migraine Diet’. UK consultants don’t seem to give much management advice so I chose to ignore her in the end. She also told me after I’d increased the Propranolol, I wouldn’t see more improvement without adding in another drug, and she was wrong about that too. Very wrong. They aren’t involved in condition management, and I doubt most (there are exceptions) follow cases through so they just don’t really know. Helen


#37

@Onandon03 Sorry Helen, I miss read that! Yes i agree my neuro hasnt really given me any guidance in terms of diet or lifestyle changes but I have managed to find out some things for myself. Im going to look into the Migraine diet… do you still follow it now? I will have a read of your post :grin: thank you

:grin:


#38

Don’t apologise. It could have easiily been read that way. Helen


#39

@Onandon03 hope your well today? Guess what?! I went for that walk I was meaning to go on and have to admit the actual walk was lovely and I felt very stable, felt very off when I got back but have managed to have a sandwich, my brain is a little sensitive to crunchy foods today too!
Im so glad I went though, it was only for 20mins or so but enough for me at the moment.

I guess im just scared to over do it and be worse… im so scared of getting like I did 2 years ago! Ive come so far since then so im trying to stay positive :crossed_fingers::crossed_fingers:
So thanks
@nin
@turnitaround

For encouraging me to get out and about :grin: xx


#40

:raised_hands::raised_hands: Well done kirsty, it’s all about small steps one day at a time. Delighted you got out and felt good. Its usual to feel a bit off after it, you’ve just given your brain and vestibular system a challenge so it’s to be expected. Enjoy your evening ahead, well done again x