Ive been an off and onn-er for a while on here, I had a bit of a dip in my first trimester but it seemed to go away again, food again the trigger.
So I am back - I am now 2 weeks in to what I thought was flu, but now is probably more likley to be a relapse. I have been in bed, floored, and fluey in symptoms but now these have lifted I just have my worst symptom…derealisation. I am still on 1mg Pizotifen and this generally had worked. Running up to flu I was probably working too hard and I was getting very stressed and dysregulated due to the pandemic and other things which now seem totally pointless…
I was wondering, is it normal for a MAV to flare after an illness? I know my immune system is compromised as it is but I am feeling so sad that I feel I cant connect with my baby cause I am stuck in this alternate world. All I can do is cry, not been able to work for 3 weeks now and was telling myself it was a protracted flu, it is so much on one side of my head, the pressure, derealisation, etc. Has anyone had this which this has passed? I feel trapped and very sad. I know it is the nature of MAV that this can happen but it has been my fear of all fears, but thought it might be ok till she was born…help!
I’m so sorry to hear you’re feeling so bad. As you probably know, with MAV things are ever-changing, so I’m sure the worst of these sensations will lift soon. In the meantime, speak to your neurologist and see if they can do anything further to help you.
All my problems were triggered by miscarriage, which is recurrent for me, so I’m sure your hormones have a big part to play here. Derealisation is so awful, and I’m not surprised you feel sad not feeling connected with your baby. Maybe you can make an effort to do anything that feels ‘grounding’ to you: eg mindful breathing, sitting/ walking in nature, going for a swim, trying to notice and feel your body as much as you can. I think the more you say ‘hello’ to her in there, the more you’ll start to feel connected.
I really hope you feel better soon xx
Oh and in answer to your question, my opinion personally is that yes, illness can trigger it (along with stress and food etc, as you know).
Flares vary hugely from person to person. Mine are 2 weeks minimum, though the latest was closer to 3 months. It’s a case of weighing up the different factors relating to your individual circumstances. In any case, focusing on anxiety reducing activities is a great thing to do
Impossible to know until it’s passed. In your condition I’d think the best bet is to sit tight and stay calm. You’ve had flare ups before no doubt and they passed so will this one. Nothing to panic about. Grin and bear and stay calm for baby’s sake. It’s no big deal. Remember ‘this too shall pass’. Obviously I’m speaking as a concerned acquaintance not a doctor but often in delicate conditions it’s best to do nothing.
Ive spoken with my GP - my neurologist was charging £200 for just a yes or no, and my GP said yes ok to up Piz - not ideal of course, but ok given the mental health struggles and severe panic I am having.
I had a sort of OK day yesterday (1st day post increase to 1.5mg) but today it has crashed agian - my diligent mother who often documents this stuff - reported that this happens every time I change dose - I tried to come off at Xmas with similar effects hence why I went back on. When I spoke with Dr. S afterwards, he told me that xmas was far too early, and only now (June time) would be suitable to even think about coming back down.
I think if I am honest with myself, I have been pretty symptomatic a lot of the time. But because of just how horrific derealisation is I saw anything in comparison as a bonus - hence no real care taken over the 6 C’s in pregnancy. I was also found to have biotoxin illness which if I am honest the protocol I was on helped massively - I am no longer able to do this as I am pregnant.
I am so scared, I am so lucky to be able to have a baby, but feel really unworthy of being a mum because I am terrified of how I will look after my baby when she is here - I have always been very fearful of a relapse post birth and now I am scared I wont even be able to connect to the experience of being a mum. It is so hard to just trust that this too shall pass.
if I look long and hard at what I have been doing I think I have been pushing things hard. Being very anxious and stressed a lot of the time, struggling to relax, eating poorly, working two jobs and trying to make a baby all at the same time, then hit with the flu for 1.5 weeks (only really stopped feeling achey on Tues, now Friday). I think I thought I was invincible or something - I dont know.
I hope so much that I can come back here in a few weeks time and say things have passed, I feel like I have failed by upping my medication and I feel like I have failed my daughter by placing this medication into my bloodstream, I feel a lot of guilt towards my poor boyfriend as well, in that he has to deal with these episodes. Something like MAV can really make one feel unworthy of love.
It is such a rollercoaster of a condition, and it sounds like you have been burning the candle at both ends, hence the flare! Take your foot off the accelerator and give your body a bit of time to catch up. Hopefully the meds kick in soon too. R&R needs to be your biggest focus right now. And if you haven’t had/ considered therapy or counselling before, now might be a good time to attend a couple of sessions. Or failing that, a relaxing massage or facial! You’ll be fine, and I’m sure you will cope with the challenges of a newborn as they come. When you take some deep breaths, just remember that if your heartbeat slows down, then so does your baby’s. So de-stressing should be number 1 on your to do list
In my experience there are so many healthy things I was doing that I gave up on because they didn’t feel like they were “fixing” anything. In hindsight, and after adding them back in, I can see they were helping me maintain a certain level of stability. Granted, that level, while stable, still sucked, but it was stability.
So, while pregnancy definitely complicates what you can do, there are definitely steps to make sure to take or restart. And they really are the basics. You mentioned working a bunch and stress and food triggers. I want to encourage you to do what you can about those. Get good sleep, eat as nutritiously as you can, make sure you are getting plenty of nutrients for both you and baby with food and a prenatal vitamin. Is it going to be a miracle? No. But it gives your body a chance to not make things worse.
As someone who has gone thorough biotoxin treatment, there are also some extra things to remember. For me and lots of people dealing with CIRS, electrolyte balance is huge. I found coconut water, orange juice and salt were often necessary. If your anti-diuretic hormone is off, it makes it harder to maintain adequate hydration. Those extra electrolytes were necessary for me.
For me there was a chunk of time when I had to rely heavily on family support, and since mine started right after pregnancy, I also had a baby in the equation. Lean on those family and friend resources when you need to. While I felt like a burden, they were always happy to help.
Finally, as much as possible try not to stress about the unknown. I know how hard it is not to, but it only produces negative results. I have found acupuncture and craniosacral adjustments help me so much with body discomfort and internal stress. If you know a way to help yourself de-stress, make sure to make time for it.
Thank you to everyone who has taken the time to respond.
It has dawned on me slightly - and also with words from my mum and boyfriend (life lines) that this is possibly not MAV. Not for now anyway.
Reason I say this, is because my mum has had the same virus and experiencing same symptoms. To a lesser extent but I guess I need to factor pregnancy into the equation. What I seem to have really, and in isolation, is severe brain fog. It is different to my normal MAV - I don’t feel unbalanced, or dizzy, or breathing wall sensation, or unsafe driving or walking. More that I feel like there’s a thick screen in front of my eyes and my brain full of cotton wool and exhaustion. In a way more debilitating as it progresses throughout the day.
Perhaps I am panicking myself silly about a huge relapse, when actually I have post viral fatigue/long Covid type symptoms…I’m sure a MAV brain (and previous biotoxin sickness) will make me more susceptible…but just maybe it’s post viral brain fog?
This feeling is perfectly natural and warranted! But, you are definitely worthy. More than worthy in fact! The care you have taken proves this, always thinking about the welfare of bub throughout this. Your taking meds for necessity - and your babe will be fine.
You seem to have a very strong network around you. Even if the worst case scenario happens, and you relapse after the birth… everything won’t fall apart, you have your family there! And that’s really something.
I had a big attack of this and my family stepped in to care for my kids. It’s amazing how much help you get … and always accept it. You’re not a burden and you’ll still be able to bond with and care for your baby… just with a bit of help. And this is worst case remember.
It sounds like post flu hangover. Maybe with some symptoms. Was it COVID? Give it some more time to recover fully. Your body fighting off a virus and growing a baby at the same time is sure to leave you exhausted.
Derealisation sounds more of a mav symptom, I have not experienced this myself. (And hope to never). Hopefully when the virus runs it’s course, so will this.
Deep breaths my friend… always remember to enjoy your pregnancy whenever you can. I actually miss it. X
Hi @Belindy Thank you so much for your post.
I can see that you are also pizotifen - I increased to 1.5mg a little under a week ago and yet to see any big changes. However to be honest I am more spaced out and not with it, wondering if the pitz is settling in…did you find an increase in symtpoms when you increased?
I increased to 1.5 over 4 weeks. I was BAD to begin with and it helped bit by bit. I wouldn’t say it got worse… as I was the worst when I started. It made me sleep and I think this helped a lot. I was also recovering from bppv which made sleeping difficult.
I’m sure though if I changed my dose now after 8 months I would feel a bit off.
I freaked out yesterday and thought I shouldnt up the meds after all, however on some thinking I realise its best to at least try and know and giving it less than a week isnt enough. I halved one of the tablets and today have had more drop attack symptoms so that was enough for me to think maybe they were helping. I had a chat with my functional practioner too who was totally useless and said i probably have long covid and wont improve anytime soon. I am so struggling mentally, more than I ever have since the start but must try and trust all is going to be ok…I think the thought of having a baby naturally is terrifiying, now am worried MAV will stop me being able to make friends and simply have the life I have been so looking fowards to…I HATE MAV. I just didnt expect such a violent relapse so soon, not that anyone expects it. I guess having a severe flu can upset things, but still struggling with feelings of failure since upping meds…even needed to take a clonazepam a few times to short circuit the anxiety and distress…
Well…my little cat, and my best friend/beacon of light through all this darkness was killed on Sunday. I honestly have gone into free fall…I am so devestated, the DR/DP is making things even more intense. I was also taking Klonopin 1mg every 3/4 days which I thought would stop any sort of addiction but seems that I am also having withdrawals from that. For gods sake. When you think things are already at their worst.
The loss of your pet is so traumatic. Especially when so sudden. Stress does seem to trigger your symptoms. This will be something to focus on moving forward. So sorry to hear
Thank you for your well wishes and sympathies following the loss of my little cat. We got his ashes back yesterday. In one way feels very upsetting but in the other I am pleased he is home with us again.
RE VM…so I essentially am not myself as of yet. However I had been supplementing with Progesterone until around 20/21 weeks as I have had problems with chronically low progesterone. One day after I put it on I felt like my anxiety lifted and I didnt feel insane anymore. My bouncing floor also went. I feel spaced out and out of it still, and VM is still lurking and active, but I feel more able to take on life, even having one day as a good 6-7/10 (1 out of 10 for me is symptoms and function are the lowest they can be). I went to EFT, took things to the charity shop, didnt feel myself but was able to come back to myself if that makes sense. My visual snow also reduced.
It got me thinking, last year when I was chronic I spoke to my Dr. She had run a test and at 31 years old my hormones were pretty much perimenopausal, progesterone was nearly post meno. I realised I had been sitting at around 50% and then I took a dramatic turn for the better, getting to around 90%. I had taken this to be the pizotifen kicking in (which it likely in part was) but I also realised that I had been taking the hormone cream/progesterone for two weeks as well. I had realised a lot of triggers were histamines - and apparently progesterone inhibits histamine release, so another piece of the puzzle I think.
Obviously now things are complicated - I am 31 weeks pregnant so tecnically my hormones ought to be sky high. I have issues with Estrogen dominance, always have but it has very much been not MAV, previously it was PMDD, rage, PCOS, scanty periods and I honestly think that supplementing progesterone is what got me pregnant in the first place. If I am honest the fact hormones could be playing that much of a role in my MAV is reassuring. My mum also suffered with the menopause, actually nearly got sectioned because of it. So we know there is a propensity towards hormonal sensitivity on my mums side. My sister nearly got divorced because of the havoc the hormones were playing on her relationship…she takes progesterone and bam, all gone.
I am seeking advice from Obstetrics, Perninatal team and my dr I see privately (NHS GP who has special interest in hormones)
Im not saying that hormones are the only thing, but I hope they are a big part.
I am not at baseline, but I am better than I was - even if only a small amount
Oh and also, I am feeling quite a lot like I did in the first tri again - a lot worse but still a familiar feeling. So instead of gettign really hung up on MAV I also need to remember I am pregnant and to a certain extent, brain fog, exhaustion and up and down mood is also a pregnancy thing.
Sounds an odd thing to say but I think it’s wonderful really that you are managing to make some sense of the cause of your involvement with VM. Really good if you can track it down to specifics that can be treated. I am sure that hormones are the root cause of VM is a majority of women but few actually find a (near) resolution. After Baby arrives and with a private doctor I’m sure there will be further hormonal assistance available for you through peri menopause and beyond.
