Hey all so figured I would update everyone
Spoke to dr s a few days ago he asked how I was doing I told him I am no longer bed bound because I am not . However I told him I still have major light sensitivity ( can’t drive at night ) still has visual snow / aura and my worst symptoms I feel dream like but also like my eyes can’t take in what I’m seeing it makes me so disorientated ! Truly this is the worst symptom
He told me there is no magic cure and that the meds are doing they’re job of stopping major attacks but he only said that because I’m not bed bound . However I still only function at 40/50% he was quite vague and said I could go up on prothaiden / dosulepin currently been on 50mg for a week now . I asked if I could fly and he said not yet . He also said that the visual stuff takes time to go and that I’m where he expects me to be 10months in.
I do feel on the phone I didn’t get much from him as opposed to face to face . I feel deflated desperate and a bit hopeless as he Asked to see me in 9 months ! I can’t spend 9 months like this. I don’t feel the medication doing much atm but realise it’s only been 2 weeks . I just feel very down and not sure what to do next . Has anyone had this symptom of being disorientated and like your eyes and brain aren’t working together . Surely that’s something the meds should help with I always thought medication was meant to control atleast 70/80% of this mav rubbish.
Anyways thanks for listening I feel at a loss right now ;(
Hey Amy, that doesn’t mean you can’t improve within 9 months, it’s just probably that there’s not a lot he can modify in your treatment plan in that period. Unforunately, MAV seems to be a bit of a slog to begin with but it does get better and easier to deal with. Hang in there!
Thanks James I totally get that , I am so aware that ultimately time is my only answer , it’s just more he wasn’t reassuring about dosage of medication and also that this medication was correct for me that’s more what worries me . That and this odd feeling that my eyes can’t keep up with my brain not sure if you ever got this ?
Amy…yes i feel like my eyes, brain and ears are not working together. I cant even make a decision on crossing a road some days without being disorientated and ive been like this almost 4 years. I know exactly how you feel. Even when im having a conversation with someone i feel discomnected when i have to look at them whilst they are talking to me. I dont even take in what they are telling me…its the pits😔
I’m so sorry you have this too jo but happy someone can relate because I don’t know how to explain it to people . When I’m outside and walking my eyes can’t keep up I’m so sorry you’ve had this for 4 years have you tried any medication or still trialling ? X
Hi, yes I’ve had all those sympthons acutely and still do when experiencing a flare up so you are not alone. I’m two years on this journey and have found the passage of time along with some acceptance that this condition can’t be fixed by one thing alone helps, along with meds, lifestyle changes etc…I know how you are feeling, I had a wobble myself earlier this week about my meds but as Helen said to me ‘all things considering’ I’m not doing too bad and she’s right! My meds albeit slowly are helping so I’m going to stick with them and give them a chance. I think we need to be gentle with ourselves a little more, esp when we get upset and frustrated with this condition or worried (I’m a queen of worry). Treat yourself as you would a loved one you are nurturing back to health - because that’s exactly what you’re doing. As James said above, hang in there, you will get there, take care x
Hi @nin thanks so much for the reply sometimes the sensations seem so crazy I can’t grasp how this can be normal I start looking for other diagnosis as crazy as this seems it’s where my brain goes . So this feeling is part of the migraine ? That’s reassuring to know as I can kinda deal with the other stuff but the disorientation and eyes not being able to focus is hard however I have noticed the aura or shimmering has lessened I am praying this means the drugs are working it just feels so slow and long. Winded hard not to let panic set it . I hope you are feeling better now I am sure we will both get there
Oh for sure this feeling is all part of it, I can’t tell you how many days and weeks I’ve googled trying to make sense of it all and questioning it all. The downside to this is it can initiate a little or a lot of panic which is not a friend of ours and can cause us a kick back with flare up of sympthons. I’ve learnt to dig deep and pull up my socks on the days I let panic get into my head, I turn to this community to lean into their experience and advice. Stay strong and dig deep on those days, you can do it!!! X
Hi Amy - sorry to hear that Dr S said not to fly yet - I know how keen you are to do it. This thing seems to have it’s own agenda and all we can do is sit it out and take professional advice. Doing a telephone interview is not as satisfactory as a face to face but if it is any comfort my last 1-1 appt was a bit rushed and I felt I didn’t have time to ask all the questions I had.
I had the same feelings as you about my eyes and head being out of synch, and funnily enough that’s how Dr S described things to me - he said that my ears, eyes and head were not working together properly and were out of synch and that is why I was getting the vertigo and balance issues . He prescribed the Pizotifen to help calm my brain down and to prevent a “migraine” plus the diet is to try to eliminate possible triggers. Since starting this regime the vertigo has gone but I still get ear and head pressure most days although I had started to have normal days without any symptoms and I hope that eventually there will be many more normal days.
PS - the Pizotifen and diet took about 5 weeks to kick in - in fact I got worse before I got better - not helped by giving up decaf tea and coffe straight away instead of a phased approach.
I’ve been doing Dr Hain’s diet (almost) for years, by observation of symptoms/triggers, before I ever knew it even existed. It just sort of ‘evolved’, so instinctive now I dont really notice it. Haven’t eaten chocolate since I was 13. I can smell a chocolate Digestive from another room even now!
Trouble is you cant NOT EAT the environment. Bright sunshine, high winds etc, etc. So much easier to avoid MSG and so on. Environmental triggers have improved so much for me with meds luckiy. If my progress is anything to go by your head and ear pressure should be next to quit and balance tends to hang on and on.
Our medical practice has operated a telephone only appointment system for a year now. You phone, GP rings back for consultation. If they want to see you, you are then ‘invited in’, by Special Appointment as it were. Neither my husband nor I have yet been so ‘honoured’.
Masters of timing these consultants. The one who diagnosed me with MAV was holding the door open for my departure when he said ‘migraine causes vertigo’, ‘you’ve probably got migraine associated vertigo’, ‘once you’ve had the MRI, I’’ll’ write to your GP.
Did giving up decaf tea and coffee help you? I drink it by the bucket loads as i thought it was ok to?
I also find myself looking for other other causes quite often. Yes, the eyes and brain are all messed up, but I have less of that now (~1.5 years into it). Gaze stabilization has helped me. I also get feeling like people are standing on my chest and face, difficulty breathing, esophageal spasms. Awful, but all basic metabolic panel tests say I’m fine. And the fact that I can run for 40 minutes is proof I think that yes my body is healthy. Its just that the sensor systems are all messed up.
Yes - it is hard to eliminate the environment if that is a trigger - I don’t know if I am triggered by that or not although I did struggle early on when there was a huge thunder storm, but that was before I was diagnosed.
Funnily enough my head and ear pressure have been much improved today so fingers crossed!
Your GP’s system is similar to mine, but I do sometimes manage to get a face to face - I was bothering them quite a bit over the last 3 months and you are quite right consultants are a law unto themselves.
I think it has helped - the whole diet thing seems to be working for me. I went completely off coffee when I first got this - just like when I was pregnant! When I started to feel better my taste for coffee returned and I am now drinking decaf tea and coffee - lavazza is a good decaf coffee brand. Drinking decaf seems to be ok - Dr S hinted on his diet sheet that decaf would be all right. X
Thanks Jan…i love tea…and raspberry gin!!! Not together tho😁
Hmm , raspberry gin -there’s a thought!
Thanks @nin means a lot , I am trying very hard not to panic and I def lean on this group when I feel overwhelmed . It’s hard to believe anything could make you feel this bizarre this mav rubbish sometimes seems hard to accept . I just hope very soon my medication starts working
Thanks so much for you reply @Janb really means a lot hearing others advice . I think what threw me is that he thought or assumed the medication was working and I do t think it is at all. I can’t look at anything moving without it sending me dizzy . I am praying going higher on medication will help me . It’s hard as I’m unsure how long each dose takes to kick in. So you found the pitz took 5 weeks to notice improvnent ? Was it gradual or after 5 weeks you started feeling a lot better ? I’m happy your doing well I think if this drug doesent work pitz will be my next option. It’s very hard to tell right now if this drug is doing anything I won’t give up until I reach a higher dose . But I’m still very symptomatic I tried watching a film yesterday and it send me all dizzy went to bed with intense rocking and the falling sensations not fun at all xx
That’s amazing it’s better @ander454 do you think it’s the gaze stabilisation that’s helped ? I haven’t done vrt as dr s said there was no need until medication controlled the migraine . I assumed because of my job and how fit I am that was my vrt I guess like you I do find it hard to grasp I have a migraine 247 that’s affecting how I see the world and how I feel it’s very hard to accept but I’ve had every test out there accept a lumbar p. So not sure what else they can test for lol didn’t realise it’s been 1.5 years for you , have you been on medication the whole time ?