I’m sorry to hear about your mom suffering with this stuff too. I have never heard of that med. I am in the US though so maybe they don’t offer it here. Do you think it is helping you?
Yeah Helen…my neuro really wanted me on the anticonvulsants…particularly SV and topiramate
I havnt trialled Soduim Volporate only Topiramate they were way to strong for me…simply couldnt tolerate them. But they sorted my mam out.shes 82 now and still takes them
I was thinking of trying topomax as well, but I heard it’s a hell of a drug for some people but it could get rid of the migraine aura too. That’s the tough part of this illness it’s all trial and error and sometimes you have to wait months to see if a drug is truly effective or not
Exactly…thats how the months of being dizzy turn into years…some.just cannot nail the correct medication. Some are " luckier" if thats what you can call it and find the right med straightaway.
Oh SV is available in US, I’ve seen it on Dr Hain’s migraine preventative flowchart and think he has a write up on it but I think most doctors prefer Topamax. Dr Hain favours it and uses it alot. Think SV is an older drug but not sure. All those epilepsy drugs must be very powerful drugs. They must be the most brain altering of all. They dont advise them for many plp because they affect the memory and cognitive function.
I really think generally the visual issues die down before the constant dizziness I’ve a strong feeling some visuals, like light sensitivity, work as triggers to keep the dizziness going. Did with me. One has to remember all the symptoms are signs that something has gone wrong with the vestibular/balance system. It’s not just a question of MAVers ‘being a bit dizzy’. Doesn’t mean the system is permanently damaged could just be it’s confused because the brain’s receiving conflicting signals/information for some reason. Helen
Ive read that you have diabetes, i have diabetes too since 2013. Im going to see an endocrinologist this week to ask him if my diabetes is causing my symptoms. Im also overweight and this has caused me to lose 25 lbs in 3 months…my blood sugar is the best its ever been. I do take metformin 2000 mg per day. If you do get meds for MAV can you please share what meds you will taking since we both have diabetes. I havent found alot of info. on this. Also, im a newbie, still pending dx, so im wondering what is the difference between visual snow and shaky vision? My vision is that all things vibrate, shimmy a bit, so its hard to focus on them and reading is difficult because of this…i read that visual snow is also called visual static which i believe its what i have but not sure…sorry of this is a silly question but i just want the right terminology when i go see all these specialist…also can you provide the link to the Facebook group…im trying to find other forums related to mav…thank you
Hi I have had this for 17 years and only just diagnosed with diabetes so for me I don’t feel like they correlate, but that could be different for everyone. Diabetes runs in family unfortunately. My mom has it and although she also had migraines till she went through menopause, she never had VM. I also take metformin 500 mg a day and rosuvastatin for high cholesterol, but I don’t have any weight issues. I’ve lost some weight since my most recent relapse as well which I attribute to finding out I was diabetic which stressed me out immensely. I also talked
to my endocrinologist about this but he didn’t think they were linked.
Visual snow is the same as static. I see it worse at night in the dark and the shakiness in my vision is different from that where if I try to focus on something it doesn’t stay still it moves a little as if it is vibrating, so pretty much what you said you feel.
I will absolutely let you know what meds I decide to take! The only issue is what works for one may not work for someone else. The best thing to do is have the testing done for your ears, get an MRI, and if all those come out clear thensee a neurologist who specializes in VM that way they can help prescribe something based on your medical history, meds you are currently taking, and the symptoms. This disease sucks and I would not wish this on my worst enemy, but I keep fighting every day no matter how awful I feel in hopes that maybe one day I will finally get my life back. Even if I don’t feel 100% I would take 85-90% at this point.
Oh, you ought to speak to @flutters, she’s diabetic and doing great with Effexor and a special diet (not the migraine one). Sure she’ll be in touch once she sees your post. There are of course some drugs that diabetics cant take and I know she did have problems with her metabolism and some drugs too. Helen
I saw this study … (please do not read if these things make you anxious):
That’s my fear is that because I’m diabetic I might be limited as to what I can take especially with the meds I’m already on for that condition. I do more of a keto diet which I think flutters does as well. I was thinking Effexor too because it also helps with anxiety and depression. At this point I’m willing to try jumping out of an airplane if it means feeling well again
I’m actually type 2 which is different but I have read studies about this before. Again though I have had VM way before the diabetes came into play. I know with the fact that I got so stressed out about being diabetic that it caused me to have a crazy relapse. I think though at this point I would like to try some meds and hopefully get rid of this or at least feel better
You must try to stop ‘worrying’ and having fear’ because that will delay your progress more than not being able to take XYZ. Anxiety will just fuel everything. MAV thrives on it. Jump your stiles when you get to them. Initially I suspect you’ll have to more or less try the drug the specialist suggests. They choose taking yr comorbidies into account. Most people have a medical history that will preclude the use of some drugs. I cannot have Effexor or any tricyclic antidepressants so, like many others, my choice is limited. I take a betablocker. Helen
I am doing better today with anxiety, however I also feel like the anxiety is a symptom of my migraines there will literally be times I am so relaxed then all of a sudden I will feel anxious then comes an awful migraine headache. It’s happened to me so many times. I also notice that sometimes after a migraine goes away (or at least the headache portion) I get the anxiety which I believe is called the prodome syndrome. So sometimes no matter what I try to do the anxiety is somehow a physiological response to the migraine.
Symptoms can definitely bring the anxiety flooding back!
And vice versa I’d say.
Guess alot of it is muscle tightness. I’ve found your neck, jaw etc goes tight and tense all on its own, you dont have to be at all anxious at the time and migraine sets in.
Thank you so much for this. I think my dx will be MAV, considering my history with migraines, and im willing to take meds so my concern is the types of meds ill be able to take. Im doing the heal your head migraine diet, but im willing to try anything to make this go away.
Thank you for the clarification…i believe i may have both, my night vision is shaky and sorta pixelated…have u always had this or just recently? Im so scared to have this forever…im hoping meds will help? Have u done vrt for your vision?..yeah diabetes runs in my family too and migraines…i also have diabetes type 2…im hoping if i lose weight it will help with this condition…my mri came back normal…except that it said i had a partial empty sella…which is also why im going to the endro to see if this causing these symptoms…yeah ill take 85 to 90% at this time…i just want to be able to drive and go to work…considering a demotion due to this illness…i pray everyday for patience, calmness and for this to go away
Hi jess yes I remember sucks we’re all meeting this way but hey mav is one beast that doesent want to be locked away it seems . I actually think the rocking has calmed down because of cutting out food triggers or the ones I have found but also being so active atleast that’s what mr vrt told me he discharged me because of it . It isn’t gone but it’s usually a calm rocking these days sometimes it can get worse ( period / lack of sleep or food triggers ) however the other symptoms don’t seem to want to go away I’m sorry you get the snow too do you also get the shimmering heat haze ?
Amazing your fog is gone , is that the same as what o describe as a heavy clogged head an it feels like ur in a dream ? I do hope ur neuro can help give some answers and relief . Are you trying any medication ? If I remember I think you said you weren’t atm xx
I think you are right about anxiety stopping the healing process and CBT might be a good solution. I am seeing Dr S in October so will see how things are by then. I am also looking for a good yoga class to see if that helps . I went back to work today and have coped quite well - I am on the phased return so that’s it for this week. Jan