Thanks so much jo that’s reassuring to hear , I am sorry you couldn’t get past week 1 I know how strong these meds can be it’s hard finding one you can tolerate and then there’s no guarantee it works ! Out of interest who do you see ? When I see dr s on the 14th I’m going to ask him my best options xx
My headache specialist is just a young lady who works in our local hospital…i live in north east england…she is great…she wont give up…the only 3 meds i could tolerate were Pizotifen, Flunazirine & Candersarten…but i had either gut issues or severe drowsiness with them…but i didnt feel ILL off them just couldnt get up for work each day so she removed them
Thanks jo did any of those help at all out of interest ? I think pitz is dr s next choice for me . I have had severe tiredness with all my meds but if did go after 3/4 weeks if that’s helpful :). X
Hi I wonder. You’ve said you are having so much trouble with visual issues and you mentioned ‘saccades’ being in a report you had carried out when you were 19, if I can ask, were you told you had any eye condition, say some sort of convergence issues. Do you have to wear prescription specs at all?
You did try amitriptyline I think you said an also noritriptyline. Did they make the vision issues worse or better before you had to quit them. Helen
I was told by my first ent I had a slow saccade when I looked left but that had been there since I was born apparantly . No I have 20/20 vision only issue I had was a lazy eye as a kid which was corrected . I have seen two eye doctors both said my eyes were fine and dr s didn’t seem to think anything was related .
The issues I have with vision is visual snow / persistent visual aura / floaters so all migraine related and none were there before this relapse .
Nort didn’t help with any eye issues and ami wasn’t on it long enough unfortunately as it messed with my heart .
Sorry, I thought you said you were getting blurry vision
‘Everything was surreal and hazy/blurry plus my eyes couldn’t focus far away’.
Two ‘eye doctors’ - was this at a hospital, and was this when you were 19, more recently, or since you’ve been ill with MAV.
Sorry, seems it’s my turn to ask all the questions. As I have an eye condition myself I remember being sent around and around the houses so to speak trying to obtain a diagnosis and as somebody else elsewhere once wrote being told my problem lay in whoever’s office I wasn’t sitting in at the time! I’ve become rather suspicious of ‘experts’ ever since MAV hit me so please to bear with me because on your behalf I am struggling to see how such an otherwise fit young woman being on preventatives for a while now isn’t seeing more improvement. Cheers, Helen
Thanks Helen at this point I’ll take help from any direction. So yes I go to moorfields regularly and since my migraines they have checked my eyes and said everything was fine and that I had good vision. go figure . Also for reassurance I went to my local optician he also said my eyes were fine . Can I ask what issues you had with yours were they similar ?
Yes blurry / can’t focus them when looking far away it’s only when I’m outside though inside my house I’m fine just get the snow. so I’m wondering if it’s all the stimuli . However the visual snow and persistent aura do seem very migraine and I assume that’s why i can’t focus them outside as there’s a heap of snow over my vision and the shimmering I see constantly in the distance . Nort I only got to 40mg so so not sure if that’s why it didn’t help ? Prop I’m currently at 100mg for the last 2 weeks with the dosulepin now 75 but only 2 weeks .
I thought it was common for people to trial a few meds before finding one that worked tho? I am starting to wonder what’s wrong with me and it’s causing me a lot of distress hence why I’m paying to see dr s in person. although I am having constant head pressure and ear pain so I know the migraine clearly isn’t being controlled .
Although I’ve had so much testing every blood test under the sun , eye tests , balance and all have said this is mav related so I feel exhausted and at a loss .
Ah well if you’ve been to Moorefields and recently it’s not your eyes. They are real experts. Maybe the higher doses of Propranolol will work for you eventually. Perhaps you haven’t reached the optimum dose as yet. Guess many plp do struggle to get a grip on MAV. I had extreme photophobia, no snow or anything of that sort, just lived indoors in the dark behind closed curtains for many months and unable to watch TV or computer screen etc. Helen
Exactly that was my thought moorfields are the best I go back for a check up sept 20th so will ask again if my eyes are ok. However my whole forehead is full of pressure after a day outside so I know that’s mav just no idea why the drugs I’m taking aren’t working however after reading @123isall needing a combo of different things maybe that’s what I’ll need. I do feel exhausted and at 30 really feel I am missing out so much .
Hopefully you go back to Moorfields before you and your partner (great idea to take him along, by the way) see Dr S? Whilst there tell them about ‘the blurry at a distance sensation’ and just ask if there could be any possibility that you have any sort of ‘Convergence Deficiency’. Certain classes of drugs can cause/exacerbate such things apparently. Just a thought. Helen
Thanks Helen I’m definatley going to ask although I am wondering if it’s because I’m so sensitive to light that I can’t focus even walking outside with street lights my eyes hurt. But will definatley ask about this thank you
i get the eye can’t focus thing. Effexor helped the dizziness but now i have blurry vision so have to wear my very low prescription classes more often than i was before. Meds can give you that blurry eye effect. Guess we need to weigh up what symptoms we can and can’t live with. I’ll take blurry vision over walking like a drunk any day.
I 100% agree it’s sonetines hard to know what’s a side effect and what isn’t ! Does Effexor help with the drunk underwater foggy feeling? That’s by far the worst for me also light sensitivity I’ve heard some meds can make that worse too x
If you are that light sensitive you do need - and appreciate how difficult it is to achieve buy I’ve done it alot!- you do need to be in consistent equal light. Walking outside under street lights is probably a better trigger than @turnitaround’s 3 cups of strong coffee, half a bottle of red wine and a ride on a roller coaster all rolled into one. Real red rag to the bull.
There are drugs that increase light sensitivity both directly and indirectly. Some drugs cause the eyes to dry out and dry eyes cause light sensitivity. Light sensitivity is so typical of migraine as to be almost diagnostic of it. The other main trigger for light sensitivity is Anxiety.
As @123isall so rightly says meds can cause blurry eyes. My mother who lived many years on high doses of medication always was for ever at the opticians changing her specs because the meds were regularly changing her visiion. Half the time the ‘new’ ones proved no better. In retrospect I now know that’s probably because our eyes gather visual information but what we actually see is dictated by our brain and the meds were altering her-brain chemistry. Suspect trouble was the dictors would keep changing the meds before her system had a chance to catch up. Helen
Thanks Helen I wear glasses all the time but even driving in sunlight or at night is impossible for me so I just don’t do it which isn’t ideal as I can’t drice to go see anyone ! Even being a passenger makes my head ten times worse
I didn’t realise there were drugs that made this worse ? Tbf my light sensitivity has been terrible from day one I would say it’s improved from the start so hopefully it isn’t the meds and rather just my wierd brain although I will ask doctor s all of this.
I was speaking to someone last night who failed 3 meds and finally found relief on Effexor which gave me hope it isn’t just me that fails medication I may suggest Effexor to doctor s .
’ but even driving in sunlight or at night is impossible for me’.
Do try to understand the light sensitivity a bit more. It will help you realise what’s happening and then you wouldn’t be so upset and keep trying to convince yourself it’s your fault or you are a much more difficult/impossible case. Driving in sunlight or at night is the most difficult thing you can ask your currently hypersensitive brain to attempt so it’s natural you’ll find it impossible at the moment. Keep driving when it’s safe to do so for now just to keep your confidence if you can. If you haven’t already got some you could try those amber antiglare driving over-glasses . I got some from Chums (mail order) very cheap, in fact they came free with a pair of over-specs sunglasses.
If you are under Moorfields it’s very unlikely there’s an undiscovered eye problem. You have access to the best of the specialists so are in very safe hands. Your apparent failure to response as much as you would wish isn’t unique to you. You know it isn’t. I suspect you still haven’t reached the maximum dose for the optimum time period yet.
Be interesting to see what they say about Effexor. It’s only barely reached the UK yet by what I’ve seen. Does mvertigo.org boast any UK residents currently taking Effexor I wonder.
Hi there, I’m based in Ireland and can access effexor, its called venlaflaxine over here this side of the world, I get the tablet that’s scored so I can start it in quarters as very med sensitive. Ask Dr s about it. Its helping all my sympthons, am on 7th week on full tablet and am feeling steady, its taken months to get here and had to work thru side effects, but worth it. Definitely ask him about it. Take care x
Thanks so much saw my gp today we’re upping my dose the. I am seeing dr s so going to ask about Effexor I know he can prescribe it. Could I ask a few questions ? How long did the drug take to feel a difference and at what dose ? Did you have any of my symptoms visual snow / shimmering and a dream like feeling like ur in a bubble if so did Effexor help with this ? Thanks so much I’m advance
Thanks Helen I actually went to see my private gp today although the dosent have too much knowledge of mav he does try his best .
He’s told me to go up to 130 of dosulepin if we aren’t getting any relief then we shall see what dr s suggests I also told him food triggers me so he has said to be as strict as possible .
I did tell him about how bad I’ve been and pretty much was in tears he agrees I should be getting more control but said everyone is different he did say however that 2/3 weeks I should feel a difference so I guess if nothing happens with this drug it’s on to the next only good thing is I am tolerating it . So far .
As for Effexor there are lots on it on the face book groups and also I have seen loads of YouTube videos where people have taken Effexor and also cymbalta with good results . As for vision I wear the anti blue glasses all the time and sunglasses outside . At night time however I’m just going to avoid it for now I have heard this can take a while to calm down but o would of expected after nearly a year of this that I would be back to driving at night .
As for moorfields I’m sure they would have too they also said my eyes are fine but my brain not so much lol
If possible would you provide a link to the Facebook groups? Im not on Facebook but i would create one to join these groups…also im so sorry your going through all of this but from your posts it seems your getting really good care…i live in the los Angeles area and im still trying to find good doctors and a dx for my symptoms…at this point i dont know whats worse the dizziness and headaches or the visual snow/ shaky vision…i could of sworn i saw a towel on the floor breathing…lol