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Derealisation / disconnected


#1

Hey all

I was wondering if anyone could relate to this I know @Natty04 has this chronically too.

It’s been 14 months that I’ve had chronic vestibular migraine , I am a lot better than when this first hit, BUT my worst and most debilitating persistent symptom is this disconnected bubble head feeling that is with me 24/7.

It kind of feels like I have a fish bowl over my head , I feel trapped and my head feels full/ numb and my vision is off. It freaks me out that after so long this symptoms has been 24/7 with no break for a whole year now. I question if my meds are doing anything if this symptom hasn’t left me ? As dr s said this is 100% part of the migraine ?

Anyways wondering if anyone could relate ? Has or had the same thing happen to them? What helped? And did this feeling go away or atleast not be 247?

Thanks in advance guys :slight_smile:


#2

Sorry Amy. At the moment I cannot relate to this one at all. However MAV seems to work to very different timescales to the rest of us. What seems ‘for ever’ to us is probably but the twinkling of an eye. Symptoms do hang in there. That’s how Helen became ‘OnandOn’ in the first place. I had tinnitus, a constant tissing in my right ear and varing degrees of fullness, from when my MAV went chronic in 2014, for years. Never thought it would go away, but it did. Just a few, maybe three months back, it stopped completely on a constant basis, just tiny bit very occasionally now. In fact all through my very recent relapse, a week in bed unable to stand, no tinnitus, no full ears, nothing ear-wise at all. So I guess nothing’s set in concrete, as they say. Just gotta keep swallowing the meds, and hoping … Helen


#3

This happened to me at the very start, but a symptom that disappeared fairly quickly and haven’t suffered from it since.

I would re-label it as depersonalisation for me as it almost felt like an out of body experience. Very odd!! At time I actually thought I’d had a stroke!


#4

Yes, this is by far what bothers me the most about MAV. Dizziness and unsteadiness I can deal with, but derealization is supremely frustrating. Unfortunately for me it does seem to be the symptom that is hardest to treat, I’ve been suffering for over 5 years now (don’t be alarmed, I have extenuating circumstances)

I have found that since I started Nori I can go for short periods and feel completely normal. Usually when I’m doing routine things like taking the dog out or shaving in the morning. It’s like my brain has adjusted to these routines and I am no longer symptomatic while I’m doing them


#5

Sorry to hear this. Do you think the Nori has given you these moments of normality? How long from starting it did you notice these brief episodes of relief? Like Amy mine is 24/7 feel like when you are drunk and have that weird detached vision.


#6

Yes the Nori has definitely helped. I started about a year ago at 10mg and have been slowly working up to 40mg where I am now. Each increase has come with about a month of feeling worse then after about 4 weeks I start to improve.

I also take Gabapentin 900mg which I found greatly cut down on the dizziness itself. Now I’m relying on the Nori to get me the rest of the way there. Hoping by the end of this year I’ll be in an even better place than I am now


#7

Oh that’s good to know. I’ve just started ami at 10mgs and I’m on 300 mgs gabapentin since beginning of Dec. I have noticed since starting ami I am a lot more spaced out/drugged feeling in the morning so hopefully this should subside over the next few weeks


#8

I was told, if I was going to try it, to take it 12 hours before I needed to get up next day, if that’s any help.


#9

Thanks Helen. I will take it earlier tonight as I take it just before I sleep, then up 8 hours later.


#10

Let me know if it helps. My GP doesn’t recognise MAV exists but she’s er … mature … and seems to understand a bit abt drugs and dosing. She selected Propranolol for me albeither second choice of beta blocker but she understood titrating up for sensitive folk so I’d trust her on this too.

Oh, she did say ‘exactly twelve hours’ btw. Helen


#11

Interesting! I always took my Ami only before sleep (well 9pm-ish) (hence “nocte”) and never during the day due to sedating effect. I’m very surprised you’ve been advised to take it in the morning too! I don’t think that is normal?


#12

Hi James. I do take it at night but not until about 9.30 and wake up about 6.30.

How long on ami until you noticed progress?


#13

Apologies, I think I misunderstood, got you.

Actually I was very lucky, 4 days before I felt an improvement, then a lot of dizziness disappeared after upping to 20mg a month later. It didn’t do anything for ‘imbalance’ though.


#14

That’s amazing! Well I’m 5 days in and my bubble head is still floating around with drunk vision :joy:


#15

i think effexor and time helped me with derealisation and with visual vertigo. Still feeling like I am rocky though, but overall much better.


#16

Hi Amylouise. Is this a similar feeling to brain fog? I have had symptoms of this for absolutely years, this is horried. I feel really weird most of the time and almost like I am not here! I have been taking B2 as ‘riboflavin 5 phosphate’ and thought that maybe it was slightly better. I think anxiety makes mine worse. Its not as bad as the constant dizziness I get along with the terrible vertigo though. Let us know if you find something that works.R.


#17

Yes, I have this, its nearly gone for me after 2+ years. It was there constantly for about 1.5 years. It was one of the worst symptoms because I didn’t feel like myself at all. I remember you said Dr. S said it was the fight or flight system, but I don’t agree. If I was in constant fight or flight mode for 2+ years I’d probably be dead of a heart attack… I think it’s just a sensory problem, probably not unlike a mild acid trip or something, where your brain is too noisy in certain areas and too quiet in other areas. The end result is a sort of altered state of consciousness that is like being in a bad dream. I definitely relate to having a numb/full head and vision being “off”.

I think topiramate / CBD oil has helped. Avoiding stress. Anything to get that head pressure down over time and keep my nervous system calm. I still think infrared light is helpful sometimes, I had a post about it a while back.


#18

Thanks Helen I laughed when you explained where the name on and on from ! God your not wrong :joy: I appreciate I am improving however that symptom in particular makes life hard never had it with any of my mav attacks accept this last one . However the fact that you had symptoms lasting years that have now gone gives me hope. I think if it was a symptom I could forget it would make it easier but you literally can’t escape this sensation :woman_facepalming:t2: Glad to hear ur doing wel tho :slight_smile:


#19

Thanks James yeah I know what you mean dr s said some people feel that way . When I’m inside I don’t feel that way but outside in open spaces it feels like I’m a passenger in my body!

Dr s did know what I was on about which is semi reassuring


#20

So sorry u get this too, I tried nort got to 50 and didn’t feel much are you going to go higher ? I’ve read lots got total relief at higher doses :slight_smile: so this should hopefully do the trick.

Do you find being outside In open spaces hard with this symptoms ?