Rough patch - scared :-(

I have had this poo since 2009 and it has pretty much stayed the same since with some days/weeks being slightly better and some being slightly worse.
Last week or so though it’s been horendous, almost back to my original attack type symptoms, i am walking to the side, everything is moving constantly and i have dull headaches, ear fullness/ringing and the usual off balance 24/7 thing :frowning:
Why am i worse? I am scared i am stuck like this!
(i did give birth to twins 11 weeks ago, could it be hormones settling? the weather here is very changeable/cold, could it be that? and i have not stuck to the diet properly for weeks, could it be that? Plus i am getting very very poor sleep at the moment due to having two babies! Could it be that? Or could it be all these things?)
I always find it hard to believe that lifestyle changes and diet etc can really make any condition this much worse?
Just looking for some reassurance really, it all freaks me out and then anxiety kicks in too :frowning:
I am not on any meds for MAV, all i do is take a multivit and avoid caffeine/sweetners etc, i have just literally started magnesium too.

Dee you sound just like me! I have had this continually since 2009. I have been similar since with better and worse days and gradually improved over the years I had it until last summer when I had a relapse like you describe where it went back to being like the original attack and was very scary. I was bed bound for two months and still trying to get back to where I was this time last year. I don’t know why it went so bad again and the only theory I have is hayfever and high levels of histamine in my brain caused the migraine to flare up badly. I only realised I could have MAV last summer and have been on nortriptyline since end of August. Have improved slowly since then but as I say lots of bad days and not yet back to where I was this time last year when I was on no meds.

The pregnancy and then lack of sleep sounds like it could have affected hormones which I believe is a common MAV factor. It is so hard when you don’t know why it goes worse, I am always trying to figure it out! Have you ever tried any meds? Maybe now is the time to start trialling some…Which doctor do you see? x

Thanks for the reply Jem, i have not seen a doctor as such apart from regualr GP’s. i was referred to a ENT specialist a year and a half or so ago and had the usual basic tests and a MRI scan, they showed nothing abnormal (i have an arachnoid cyst on my brain but it is very small and the ENT guy said most people are born with them and it is of no signifigance)
The ENT guy rounded up by saying he suspected migraine and advised that i see a neurologist, i asked my GP about that but he refused to refer me because i was pregnant and he said hormones would be all over the place and it would not be a good time to try meds.
Perhaps you are right, i should try again to see a neurologist and get some medication/help.

Yes definitely! Now is the time to insist your GP refer you to a neurologist who will be able to help you :slight_smile:

Hi Dee,
You make me laugh when you talk about what is going on in your life and then wondering if this could be attributing to your MAV…a resounding YES!! :slight_smile: Everything is crazy right now as far as your brain is concerned…and once you start the fear of going back to that place when things were at their worst, then the anxiety kicks in and makes it worse. Don’t fear. You are experiencing a low threshold time in your life and you can get those things on track and perhaps add in some meds to raise your threshold. I don’t know if you are breastfeeding, but if you are, I’m sure you already know it wouldn’t be the right time.
Things will get better!!


Firstly, I’m so sorry you are going thru a rough patch. I know how crap they can be. I really feel for you. Please know you will look back on this with time and see progression.

Secondly, like Kelley said, good god woman!!! You’ve just given birth to twins!!! First off a huge congratulations !!! But second, no bleeding wonder you’re all outta whack! Your hormones for one must be all over the shop and second your sleep must be totally gazonked!

It’s the one biggie that scares me long term with this- pregnancy and my ability to go thru it- so kudos to you for twins!

No that you are postpartum perhaps it’s time to see a neuro. Rest assured tho, it makes logical sense that as ur hormones settle, so too should mav. If you can have as much help as possible with the sleep patterns I can only assume that should help you too.

Big congratulations but time to be kind to yourself now hun xxx


Thanks everyone for your kind replies :smiley: I have felt a little better the last 48 hours, not much but a little and def not worse thank goodness! Trying to be stricter with the diet and trying to look after myself when i can!
Also think i will ask about seeing a neurologist soon.
Congrats Missmoss by the way, you will cope ok because we have to, if we can survive MAV, pregnancy is a breeze lol We must not let this condition stop us doing things we want to in life, thats my motto, but we must also accept help if we can get it too xx

Oh blimey Dee, you misunderstood me, I’m not pregnant just yet- at least lets hope not for the babies sake- excessive wine consumption not good for fetuses right? :slight_smile:
I just worry that when the time comes it is scary to think of pregnancy + MAV.

Big good luck to you xxx

— Begin quote from ____

(i did give birth to twins 11 weeks ago, could it be hormones settling? the weather here is very changeable/cold, could it be that? and i have not stuck to the diet properly for weeks, could it be that? Plus i am getting very very poor sleep at the moment due to having two babies! Could it be that? Or could it be all these things?)

— End quote

The first, and most important thing I have to say is CONGRATULATIONS ON THE BIRTH OF TWO HEALTHY BABIES!!!

Now, let’s consider your symptoms and your environment. You are in hormonal rebound (check), the weather is variable (check), you are eating whatever you can whenever you can (check) and you are sleep deprived (check). I would say that is the perfect storm for migraine–or any other neurally mediated disorder!

The good news–your mind will settle down again and you will get back to manageable.

The bad news–it is going to take time, effort and likely medication–and it is going to take patience–none of which you likely have a lot of tolerance for at the moment with the new babies in the house.

If you are nursing, then your hormones will likely be regulating fairly quickly–but be aware that when you wean the babes your hormones will go haywire again for a month or so. You’ll make it through, but be aware.

THE WORST THING that is happening right now is the sleep deprivation!!! And honestly, unless you are lucky enough to have someone who will take the babies for one night a week (inlaws or outlaws???) you may well be stuck with that for a few more months.

We are here to support you through this. It is not deadly–as scarey as it is–and we understand your fear. Hints and ideas are all we can give–but it is always nice to know you aren’t all alone out there.

SOrry you’re going through this, especially during a time when you feel like you should be so jubilant. What the baby books don’t tell you though–is that I don’t think ANY OF US felt super jubilant at 11 weeks–we were tired and cranky…so don’t listen to the books–the joy is in hindsight :lol:

Thank you everyone, it’s so reassuring to know i am not alone with this :slight_smile:

Today i have been a bit rough again, feeling lightheaded and like i will faint but lasy night was a zero sleep one so i’m sure i am on trigger overload…hopefully tonight is slightly better x