I know it sounds dramatic but it truly feels this way , I’m so happy to hear you say that , I think it’s the time I’ve had this for that scares me more than anything . However hearing you say that has made me feel a lot better . I am sure we will all come out of this with a while new lease of life and appreciation
I am sure that better days are on the way for you, sooner than later I hope. My personal progress on nortriptyline has been slow, with definite ups and downs, but since there has been a degree of improvement over 14 weeks I have to keep believing that this treatment path may work.
And please believe I know how awful and nightmarish the symptoms are; sounds dramatic to say but I’ve had those “if this is my life, I don’t want to live it” moments frequently and have cried more over the last 6 weeks than any time in my life. But then I have a couple of better or even good days and my hope for the future returns.
I have a lot of physical problems to deal with at the moment but without question the chronic migraine is one million times worse than any of them. Broken leg and root canals are baby stuff in comparison—and all this for something that can’t be seen (“you don’t look sick”) and is very difficult to describe. This site and the resources it’s linked to have been very useful in helping me generate more vocabulary for describiing my experience; I feel like I’ll be better equipped for the next neurologist visit.
Thanks @lsengara it’s reassuring to know it takes months for it to kick in. Sometimes I think after a few weeks on meds I’m meant to be a lot better . I am so happy ur having some better days . What dose are you currently on? I haven’t had a normal day in 10 months think that’s the scariest part .
As for nightmarish and crying I have lost count of how much I’ve cried to my partner . I have been through a lot and this by far has tested me more than anything .
I do think the meds are def doing something lorissa so I am hoping you will have many good days very soon
My current nortriptyline dose is 50mg daily. I can’t remember the last time I had a completely normal-feeling day but some have felt much closer to normal than others. Logic tells me it must be possible to reach normal or close to it on a regular basis. The fact that my head got so much worse after I was hit by a car is a drag; I feel like a small dose would have fixed me right up if I had been diagnosed earlier.
I’m in the same boat, visual disturbance symptoms are the worst for me (much more so than true vertigo, which I rarely get). I often have a strong sense that me eyes are out of step with my brain and it brings on intense tension headaches and wooziness which if I allow for too long progresses into vertigo symptoms. I can feel a bit drunk & out of it from that, but mainly it brings on nausea / motion sickness. Fortunately I only feel truly disoriented if I’ve got my eyes closed and I’m moving… I start to get a “lost in space” feeling like I don’t know where I am, which makes me start to panic.
I definitely advocate also for watching anxiety levels as best you can, which is extremely hard with this condition - anxiety can worsen these types of symptoms in my own experience (which isn’t to say being anxiety-free means being symptom-free either).
For me, time and medication have lowered the symptoms over the course of the past year to a baseline where I can sort of function with nothing extraneous. Any sort of strain or exercise induces symptoms though and I’m highly sensitive now to lots of migraine triggers (migraine diet is helping me too but it’s not bulletproof).
Best of luck with your recovery, I hope you find some relief…
It’s so hard to wonder the what ifs however although the car situation is not ideal things happen I am so sure you will continue to have many better days
Thanks so much @matt99 it’s always reassuring to hear it isn’t just me with these crazy symptoms !!
Could I ask did it take a while for the meds to kick In? For me it’s very hard to know when to wait it out or give up with medication. That’s pretty much how it feels like I’m drunk hopeful with the correct dose my sensitive brain calms down
That sounds like me recently. I was doing so well bombing along at about 80% until it was becoming the new normal then rather than relapse or breakthrough it seems much more like you have been exposed to new triggers which set you back instead. I wonder whether it just seems that way because things have settled more you can actually identify as triggers things you didn’t know were triggers before because it was all such a muddle. These newly identified triggers give symptoms that don’t last overlong but unfortunately the next batch are only just round the corner, and off we go again. I do find it frustrating though not really being able to resume Tai Chi still. It seems my newfound steadiness (was 24/7 dizzy for nearly 4 yrs) isn’t robust enough yet and will soon cut in. I find walking, outside, is least tormenting to the MAV. If I ‘overdo’ that by walking on uneven ground, in very high winds or farther than the MAV thinks I should instead of the dizzies cutting in a bit I get this strange feeling my eyes aren’t working together, probably your eyes and brain being out of step syndrome or similar, although it doesn’t stop me seeing clearly just affects my dynamic posture, the more I’ve pushed it, the greater the effect, Really only noticed this this last week and beginning to wonder how long this phase will last. MAV tends to morph regularly. Helen
From all I’ve read that’s not the case. Whether we can believe that or not, I’m unsure but I do know I’ve had MAV for nearly 15 years, first 12 without even knowing it, and now on meds I’ve improved considerably, so far to about 80% so even if the time delay did mean it might take longer and highe dose maybe at least improvement is certainly still possible,
It’s hard to say, but generally speaking yes, it took awhile. I started a migraine diet & the meds almost at the same time, and it’s hard to tell which is doing the work (both help to some degree, I suspect). My experience is that everything is really slow with this disease. The biggest benefit I got from starting meds and the diet was the lessening of proper “attacks”… just my every day symptoms that have been very slowly, over months, trending in a positive direction.
My doctors generally spoke in terms of weeks to see any results from meds though, I’m sure it varies by drug. I’ve also been very slow to increase my doses too, which could be drawing things out (that’s a whole different problem I have).
Muddled is a good word for how I feel. Mostly I just feel like some vindictive person is fiddling with all the sensitivity dials in my brain each day . But I do feel like I’m in that slightly settled place where some trigger patterns start to emerge vaguely. Just a few weeks ago for the first time I was able to clearly connect a food as a trigger. Well, a group of foods… I don’t know which one. But I also feel like on a different day maybe it would have had a different result.
I’m a bit gun shy about trying to flesh out triggers, when the price for finding one is being down-and-out for a couple days… I’m already holding on to employment by threads. This disease can be really paralyzing like that… anything to keep from kicking the beehive, you know?
Amy, I feel for you. And know what you are going through. Have you tried topamax? That is good for some with the visual issues.
Have you tried a migraine diet of any sort? Have you read the Lauren Kossack story. What meds you on. It’s a long slow drag MAV. Propranolol took 8 months to get some sort of a handle on my symptoms, whilst studiously avoiding triggers. I havent been in a restaurant in 4 years come early December. A very few supermarkets but no restaurant meals. Improvement has continued on same dose after the 8 months.
I sure do. I’ve stayed at home without socialising for far too long now but when asked how I cope/why I dont just go to this or that meal out. Does anybody really needs to ask. When 2 hours in a restaurant results in 8 day long acute attacks, and then an extended recovery period of weeks to get back to 80%. Then that extra trigger just fuels the MAV to stay longer. One day soon I might just try a sitdown coffee with Him Indoors out and see how it goes. Helen
Thanks @123isall nonhavent tried topamax not going to lie is scares me . I think my next med will be pitzotifen . Are you trialling topamax ?
Topamax is well proven to work for the minority I guess that can tolerate it. I dont fancy any of the anticonvulsants, that’s some powerful drugs. From what I’ve read recently on here including @123isall’s contributions I think I’d prefer The Bubonic Plague over Topamax. Apparently these days even that can be treated with antibiotics. As visual issues are symptoms just as is ear pressure and dizziness all the preventatives will control them, once taken at sufficiently high dose over sufficiently long period, so it should be possible to avoid Topamax if one keeps trying hard. Helen
A very much belated afterthought. If you are experiencing this ‘eyes don’t keep up with brain’ mostly outdoors. Do you wear sunglasses outside and/or a wide rimmed hat? If not, do try it. If straight sunglasses don’t help, try the wraparound sort instead. Helen
Yes it’s mostly outside in busy places I always wear sunglasses but il get the hat
Tried wraparound sunglasses, the ones with sides, not face hugging goggles (thats last resort). It could well be objects passing through your peripheral vision causing some of the problem. You really need peripheral vision for balance particularly when MAV unstable. This is another symptom that will pass. I used to get it alot but not now. Helen
Late response bit would like to add my 2 cents. I have had substantial issues with VOR (see below). This gives me the feeling you describe. It makes it even a bit painful to scan back and forth for instance looking for something on grocery shelves or driving.
Vestibulo-ocular reflex (VOR), eye movement that functions to stabilize gaze by countering movement of the head. In VOR the semicircular canals of the inner ear measure rotation of the head and provide a signal for the oculomotor nuclei of the brainstem, which innervate the eye muscles. The muscles counter-rotate the eyes in such a way that a rightward head rotation causes an equal leftward rotation of both eyes, with the result that gaze direction stays stationary.
VOR works in conjunction with the optokinetic reflex (OKR), which is a feedback mechanism that ensures that the eye moves in the same direction and at almost the same speed as an image. Together, VOR and OKR keep the image stationary on the retina, with VOR compensating for fast movements and OKR for slower ones.
My docs tested this with a vHIT (video head impulse test) which showed severe weakness on the left side. Unfortunately I don’t think doctors appreciate how much this affects your life. It won’t kill you so I just don’t think there is much focus on fixing issues causing it. My opinion is that drugs may help you tolerate this bit i am skeptical they can fix it. I am probably in the minority on this forum but I feel the vertigo related issues from a physical problem with your vestibular system causes the migraine symptoms as your brain tries to deal with bad signals from one side. And the VOR seems an autonomous function that your brain is not normally involved in causing it to struggle
Anyway that’s my opinion for what it’s worth
I’ll add that I am much better at this point 2.5 years from my last attack bit still have balance issues and VOR issues. I tried lots of drugs but found no relief from vertigo related symptoms like VOR issues or from migraine related symptoms (although many on this forum have had relief from migraine symptoms it seems)
What I feel has helped is lower salt diet, and triampterene/hctz (diuretic) to help avoid attacks. I drink lots of water and exercise without pushing too hard. I also carry valium with me at all times and take this if I feel an attack coming on.
Thanks so much for the reply Dave , I would actually massively agree with this . Oddly enough since I was young and not many issues with mav I had something with my VOR think in my notes is says something about saccades but I saw a functional neuro who said my VOR on my left side was very weak.
However my issue is before this relapse I had that issue and I was functioning absolutely fine and no mav or symptoms . So I am unsure how much it’s playing s part now . I am very sure it doesn’t help.
I have seen many eye doctors each saying my vision is fine . However I also get this surreal feeling like I’m in a dream and my eyes can’t focus this seems more a migraine symptoms however I am yet to find a drug or dose that’s relieved it but I have seen many here who have so I guess I will keep trying .
2.5 years is a long time would you say your back to 80% these days , did none of the medication you tried help at all? Thank you for the help regardless I’m glad to hear your improved