However I remember being so annoyed when people didn’t come back and update so here I am!
a lot has changed for me I now have twin boys ! They are my world and I did end up on a low dose of Effexor during my pregnancy !
At one point I had got down to 20mg and was doing fine but postpartum and not much sleep were huge triggers so have been back on 150mg and doing well.
I changed doctors as didn’t like dr s much and saw a man named dr manjit matharu he’s been amazing I started amivog injections a year ago and they helped me hugely !!! They mostly got rid of that odd spaced out feeling ! I feel it a little still when outside or busy places and especially a week before my period but it’s mostly not something I think about much.
Don’t get me wrong if I do too much have too many triggers I can get bad days but nothing that disables me .
I was so ill with these migraines and met so many helpful people along the way to anyone stuck in the horrible dizziness I does get better .
I had to trial quite a few medications before finding something that really helped me but I got there and you will too . Not sure if anyone I know is stilll here but I hope this post helps someone.
that must be especially tough - having babies is extremely hard work, let alone twins, my goodness! I hope you have a good support network! At least you get two babies and once through the tough times you don’t have to revisit.
wow that’s really interesting! Did you get these on NHS? If not, how much, dare I ask? Did it do anything for your other symptoms?
We still have a few regulars, though it’s definitely quieter.
I do wonder if everyone is now just talking to chatbots, lol. Well:
I personally think human discussion is superior as chatbots can’t suffer from this awful condition.
there is one on here anyway if you must lol, dedicated to this website and its content.
Appreciate the share. It’s always fantastic when someone comes back and provides a positive update, thank you!
My gosh twins are no joke but I am glad I got two for the price of one!
I did get these on the nhs yes I was on the waiting list for. Botox first after paying for it privately to see if it helped but my last symptom was always this spaced out feeling I think it’s part of my aura tbh.
Anyways they the. Offered me amivog I couldn’t. Believe how well it worked as so many had said it would for vm but it 100% did and had zero side effects so a very good option for people who can’t tolerate meds!
I hope you’re doing well ! I agree chat bots aren’t real humans ! X
Massive congratulations on the birth of your twin boys!
It’s great to read you’re doing so much better and are not feeling as disabled by the dizziness any more. Thank you for coming back on the forum and posting!
Like you, I also didn’t like Dr S much; the last time I spoke to him, for my appointment before his NHS clinic closed down, I asked him what else I could do if after a while Pizotifen + Nortriptyline that I was on weren’t doing enough - he started shouting at me!
Like you, I’m also on Aimovig injections; they helped me massively achieve remission in 2021. I had a relapse and am now back on them, it’s a slow process but I’m making good progress. I also get them on the NHS.
Wishing you as symptom-free as possible a time with your baby boys!
James - re it being quieter - I wonder if most people are on Instagram now? I’m on there and there’s a very active dizzy community on there. Also for any mums, maybe Amylouise you’re interested, there’s a Dizzy Mums UK support group that meets (online) every month.
The rebranding sounds like a good idea I’m thinking! I’ve noticed that people are using different diagnoses / labels to describe themselves than back when I became unwell in 2014-2018. Back then I remember we spoke a lot about having “MAV” or migraine-associated vertigo, whereas I see a huge amount of PPPD on Insta now (sometimes people are given only this as a diagnosis and no migraine is mentioned). So maybe the term “dizzy” will appeal more than migrainous vertigo?
I think the site is great otherwise, I just think Instagram appeals because everyone is on there nowadays…!
Amy! I am also here rarely these many years but was happy to see your name and even happier to hear that you’re doing so well. I appreciated your thoughts and support so much in the time we were both struggling so severely with symptoms (6-8 years ago?) and it is truly wonderful to know that you have had so much recovery. I have too! It has been a long road and I’ll still sometimes have a bad day if the triggers accumulate but generally I consider my symptoms well managed and know what to do lifestyle-wise to keep them that way. As of about two years ago I successfully tapered off the migraine meds I was taking (topiramate and venlafaxine) so now I just get scalp Botox every 4-5 months (this has been quite helpful for me and I will probably be able to space it out more in future or even stop) and get magnesium infusions. I still take a handful of supplements and try to sleep properly (poor sleep is my biggest trigger), try not to be in too much sun or wind, and try not to get sick (colds have repeatedly triggered severe relapses for me so I still generally wear a mask in public indoor places). But I have recovered so much of the normal life I thought was lost to me and have been able to return to my work, to travelling internationally, going to concerts, so many things.
I’d also encourage anyone who is having a hard time with symptoms to keep at it and not give up, to have patience but also know there are many treatment options and some combination of things will help you substantially given time and the chance to work.
How lovely to hear from you again and to discover that you now have twin boys! Can you imagine being able to contemplate having one baby, never mind two when you were struggling so much with MAV etc. I am so glad that you eventually managed to find the right treatment plan for your symptoms as I know you really struggled with the ones that Dr S prescribed.
I too have manged to stay vertigo free but still get odd symptoms here and there plus am still stuck with the 24/7 high pitched tinnitus, but I can cope with that if I am not also feeling dizzy.
