Ami is helping suppressing lot of the symptoms. I know there are still in the background but hardly noticeable most of the time except when im driving. When i come to a full stop, i can feel the swaying and rocking in the background but dont feel it once i start speeding up again. It’s strange because I don’t get the rocking and swaying when i’m sitting down at my workplace. Also, sensitivity to sound has disappeared as well.
@Young_Lee I was like that before this relapse. I was to a point that I could function well and everything was pretty much in the background, but now it is awful I feel so dizzy today especially while sitting it’s like I am swaying out of control
I need meds too because I just can’t take this anymore this feeling is so bad especially today
I really hope that I can get to that point because right now I have lost all my will to keep fighting this thing…I can’t do it anymore
Did it take you 3 years to get diagnosed? Or are you very med sensitive and were trying to find something that works? Your symptoms sound very similar to mine. I just hope I find something that works and it doesn’t take years for me to find it
have you tried going for a walk? it helps me when i am rocking badly. What meds have you tried in the past?
All I can do is walk and drive. I don’t have a problem with motion sickness per se it’s like the opposite I feel better when I am in motion. I want to be able to sit down and lay down to rest. I am hoping that I can get some meds in 2 months that can help with this feeling
Why don’t you just go to a regular gp and ask for some meds instead of waiting?
I’m seeing her in 2 weeks so i can talk to her but she doesn’t like to prescribe stuff like Ami and nort because she isn’t a neuro.
bring her the info of the flow chart recommended by Hain. She will see the dossages are smaller.
Mine started episodically in 2003. As I sd I was told it was BPPV and there was nothing that could be done. Nearly a decade later, no exact date I started to get symptoms in between acute attacks for the first time and then saw various ENTs none of whom could diagnose me with anything. Then following an 8 day attack in December 3014 the accompanying dizziness didn’t ever go away and I was then 24/7 dizzy. GP tried to tell me it was Anxiety and gave me SSSR’s which I didn’t take but because one ENT had suggested it I did try VRT for 6 months which then increased the attacks until I had weeks on end in bed with barely a day or two between attacks so in October 2014 I saw neuro-otologist and was given probable MAV diagnosis and told to try preventatives. GP gave me a betablocker I took for a few days and had terrible digestive problems with. Then discovered I’m very med sensitive. Later found out probably the coating on the pills rather than the chemical content. Second betablocker, Propranolol, seemed OK but it took me weeks increasing at 10mg a week to really get on it and because my GP doesn’t understand anything about MAV she kept telling me not to take any more than really necessary, keep it low sand so I then stayed at a dose which did somethings but not much for more than one year. My GP said that is as good as it gets, not expect to ‘get better’, drugs won’t do that then, fed up with a life on hold for years on end I saw a specialist migraine neurologist who made me up the dose and step up the outside exercise and things improved again. That was in February 2016. Took til April to hit high enough dose and then it took 8 further months before the dizziness started to come under control. It has gone on improving very very slowly ever since but I’m still only about 80-85%. I avoid main triggers. Have not been in a restaurant at all ever since December 2014 which triggered the 24/7 symptoms. I’ve mastered some main triggers, or the drugs have, strong sunshine still remains and it seems any form of Anxiety, Hassle will kick things off which is strange because I’ve never been a person who ‘freaked out’ before. Wouldn’t have known what Anxiety of any sort felt like.
This story does really prove everybody needs to be their own Advocate and research for themselves and not just accept with GPs might say, everybody with MAV needs and deserves medical assistance that knows what MAV is and how to deal with it and everybody needs to look at their Lifestyle Choices with regard stress, anxiety levels etc. Fear and being ‘worried’ about side effects before you’ve given tried a drug is another Enemy to Recovery. We all have to learn to do what my Granny used to say and ‘Jump your stiles when you get to them’. Personally I’d add in there everybody at least initially needs meds. But that may depend on how ill you are and maybe how well established the MAV is. I’m sure I wouldn’t have improved without them. Helen
Thank you Helen. I definitely know I need something and plan to take something as soon as I get to the GP because living like this is not living. I need something to break this migraine cycle even if it means enduring some side effects in the short term. I take two medications for my diabetes as it is and I started them out low and slow with no issues so I am hoping to do the same with a migraine preventative. I have had this for 17 years and for the most part I recovered within a few months and the dizziness would go back down to a point that I would really have to focus on it to know it was still always with me. Now it just seems to get better for a couple of weeks and then BAM it’s back and stronger than ever. Stress is a huge trigger for me as well as fluorescent lighting and loud noises. I know which foods for me are triggers as well and because I am diabetic I really do only eat whole foods anyways to keep my sugar levels good. I appreciate you taking the time to respond to me. It is horrible that we are all suffering with this, but it is nice not to feel so alone. Again thank you ️
Hey @jess21880 I really relate to your story I also have had this since I was a teenager usually episodes lasting 6/8 months my relapses have happened every 5 years always just mild imbalance then 10 months ago it hit me HARD just before my 30th birthday . The rocking was very bad at first now that’s calmed down and I’m left with this odd spaced out feeling bowling ball head and really screwy vision. I really believe 30-35 is a very active time for migraine maybe hormones I don’t know BUT although very slow there has been progress in the last 10 months at one point I couldn’t leave my house or even bed. At the moment I’m trying to find a medication that calms the rest down but I know how your feeling and I agree with @ander454 therapy is s good call it’s hekped me and also trying to do as many normal things as possible as hard as that is
You may be right about hormones…mine certainly is hormone related for sure!!! Never underestimate what a hormone imbalance can do. My mam developed temporal lobe epilepsy at menopause and now takes Sodium Valporate which is also used a lot for MAV…too much of a coinicidence her to take ill with neurological problems at 50 years then me struck down with MAV at 49…and the same drug used for both conditions
Gosh jo , I’m so sorry also I don’t think that’s a coincidence at all! Does the sd help your mum ? So interesting that these drugs are all used for similar things . I’ve heard sv is very strong although my friend took it for migraine and had no issues xx
It’s not surprising really. Balance is such a fundamental part of our being. Just having to avoid triggers in itself leads to Avoidance Anxiety. Then there’s the Uncertainty of when/how long before one might get back to some sort of normality. Trouble is I’m sure the Anxiety, whilst not the cause, can stop/stall the healing process so, somehow needs controlling. CBT/meds/therapy? Helen
SV first choice of migraine specialist I saw. She sang its praises. Only drug she mentioned, not that there were many, that she praised. Said it was wonderful for migraineous vertigo. She upped me on Propranolol because I was already well established on it and she knew I could tolerate it although she was equalky happy to take me off it completely and replace it with SV. But I wasn’t! Helen
Yes the anxiety and uncertainty in all of this plays a huge roll
Hi Amy I have talked to you through the Facebook group before I was wondering how you have been doing. I am glad to hear the rocking has calmed down…that gives me hope that mine will eventually calm down again. I am however sorry that you are still having an awful time with your other symptoms…this thing is dreadful. I have a permanent migraine aura that presents itself as visual snow too, but luckily I don’t have the brain fog anymore. I do have some shaky vision too. I just wish this thing would go away for all of us . I have been going to therapy and it helps a little but the thing is it’s the damn symptoms that cause anxiety and even though they won’t kill you it’s hard to get comfortable or sleep so that in turn doesn’t help. I am going back to my neuro in October which I am hoping he puts me on something which gets rid of these rocking swaying and imbalance sensations I am feeling because the visual stuff I can live with it’s the constant motion that drives me insane.