HI there, just signed up and first post! i am having a really hard time coming to terms with my symptoms. I feel I am walking on a trampoline constantly… if it does disappear it is only for a little while. I am extremely sensitive to light and sound and smell. I am unsteady when I am out in bright lights some shops are okay others are awful. I can wake with a pounding headache or not and still have these symptoms all the time. I started with vestibular exercises two weeks ago and since then I don’t seem to have any break from the symptoms, I have been to a neuro and ENT waiting balance testing but he is at a loss. I am going to see a dr who specialises in migraine this week. I Feel half drunk a lot of the time walking. I am better in natural light. I can’t seem to negotiate moving objects either, can’t go on an elevator or travelator, this all happened last April. I was diagnosed with postural Orthostatic Tachycardia POTS. My heart rate on standing would go to 180 my BP would drop and I would faint, since this it’s like my whole system was thrown out. While heart rate etc has all been sorted it’s like my vestibular system is out. Would love if anyone can help thank you
Sorry you are suffering. Sounds very like a vestibular issue to me, possibly MAV, but get fully checked out at a specialist clinic. Discuss symptom management with your Dr:
NB I’m sceptical personally that migraine is a cause, for me these things could be multi-factory but in general: ‘ear trouble’, and ‘ear trouble’ can cause you all sorts of awful neurological issues and knock-on symptoms …
Thank you for your help, yes I feel I am ticking alot of those boxes, I was told today to start topomax… but they are not sure why I am having the symptoms all the time! I really am at a loss… I can’t tolerate the feeling it is awful…
MAV is dreadful. MAV and Secondary Hydrops are two conditions that are pretty much 24/7 but the meds can make a huge difference.
Just wanted to say that I completely understand how you feel. I also have pots and have been told I have MAV too. I constantly feel a bit off balance and that everything looks strange (even though my vision isn’t blurry or off!) I cannot tolerate shops due to lighting or busy noisy environments. I also struggle with neck/ shoulder pain and all these symptoms together can make me feel anxious. I’ve tried amitriptyline (made my heart race), gabapentin and topomax didn’t help and caused horrible side effects.
I’ve now decided to go down the holistic route (recommended by Dr Ingle at Queens Square) and have started acupuncture. Only two sessions in but no horrid side effects. Will post on here if I have success but just wanted to post to say that you’re not alone. Still to this day struggle to differentiate which symptoms are caused by pots and which by MAV. Hope this helps . Good luck, Jo x
Im convinced there is a link between you heart rate and Blood Pressure and MAV - I keep going Tachychardic and my blood pressure can go as close as 15 points apart - I think your nervous systems can be affected by MAV.
I agree with you. I have postural hypotension as well as supraventricular tachyarrhthmia and VM/MAV which cannot just be a coincidence. When my BP drops I faint and the tachycardia happens in my sleep as well as when I am awake. I am guessing that because the electrical activity goes bananas in the brain with VM it has a similar effect on the electrical systems elsewhere in the body, ie the heart and the stomach. I am not a doctor but it seems logical to me.
Hi Pheenie, my heart rate and BP are now fine and don’t have any fainting episodes thankfully, taking 0.1 florinef, but left with this vestibular problem. I went to a vestibular physio and she told me I had persistent postural peripheral vertigo. PPPV along with VM. Dr prescribed topomax so debating no whether these will help or not. I have started the vestibular exercises which will be a slow process… how are you and your POTs.
Revolving , I was told this week I had PPPV. Persistent postural peripheral vertigo and there is a connection with this and pots and or syncope
That is great that you have a diagnosis and I hope the physiotherapy helps you. I am waiting for my appointment.
I just have to be really careful when getting up or walking up hill but as I have had it for years it has become second nature, even though it is annoying! One doctor told me to lie down wherever I am if I feel faint!!! NOT always possible.
Thanks, revolving… were you also diagnosed with POTs because that is what used to happen me, I’d stand up my BP wouldndrop heart rate would go up. But it used to happen me lying down aswell in bed. Happen twice during the night in hospital 3 nights in a row… I was on a monitor so they were able to monitor and capture the figures… I know I was told it was PPPV but sometimes I wonder is it all POTs related. It is really getting to me, I’m fine one minute get up the next and I’m not. Im doing the exercises religiously so hopefully it will pay off… I have tried everything else
Hey Potsie. I have the same issue with lighting, both for bringing on vertigo and making things a lot worse when it’s already a bad day. I find blue blocker glasses help a lot, though you have to make sure they actually block blue light (around a 489nm peak) as not all glasses actually work. I’m currently using these: https://www.amazon.co.uk/gp/product/B01MDT8G6J/ref=oh_aui_detailpage_o02_s00?ie=UTF8&psc=1 .
Potsie they didn’t call it POTS just part of VM. Like you it happens in my sleep too which was captured on 48 hour BP monitor. When I wake up I have this warm electrical feeling which starts in my chest and radiates throughout the rest of my body which feels as if I have slept too deeply and my circulation is just getting going again. It was scarry at first but it has been like that for 8 years and I am still here!!! Amazing what you can get used to isn’t it?
Thanks Paul, I got those for the night time driving. I went to the optician and she gave me a sample of vista mesh tontry, I actually found it was food for flour scent lighting but car lights etc awful. So I’m looking now at getting a blue light blocker lens and hopefully a light tinit on the glass. I would get over the light sensitivity if I wasn’t so dizzy. Whether it is the Postural Orthostatic Tachycardia giving me this, but there sure are a lot of vestibular issues aswell.
The blue light blockers that actuallybwork tend to have an amber tint (don’t get fooled by the clear lens or slightly tinted ones - they might have a slight effect but definitely not enough. I test them by seeing how well they block a blue LED - if it doesn’t look dim or off, they don’t work!). Have also heard good things about the FL-41 lenses but haven’t tried yet as they’re harder to get in the UK. But they are supposedly designed specifically block the wavelengths of blue light that are though to activate the subretinal cells that have been implicated in migraines, dizziness, photophobia, SAD, etc.
Hi Potsie, just wanted to say hi and sorry you are going through this also.
I have pots also and me/cfs but the mav on top as well. It’s incredibly tough going. I hope you are having a better day, will read/write more when I’m more with it though x
Hi fed up, would love to hear more from you, it really is hard, today was bad. Hope tomorrow will be better. Started on a new meds for the pots so lets hope it improves the lightheadiness too
So sorry for my lateness, I’ve been really not upto things. Lots of probs going on. How are u going on your new meds?