Thank you for all the help it really means a lot
Absolutely, any time. Just keep moving forward one day at a time and suddenly youāll realize you made it through a day feeling good and that day will turn into weeks, months, yearsā£ļø
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Thanks so much Lisa really means a lot 
2 posts were split to a new topic: Ive been apart of this forum for a while but never wrote anything
I went up to 50mg nort 2 1/2 weeks ago (after 3 months on lower dosages) and it definitely is not controlling my symptoms (yet), though Iāve had a few days that have been closer to normal than any time since my symptoms worsened dramatically 5 months ago (when I was hit by a car). I cried talking to my GP this week because I was so discouraged, thinking this med is the wrong one or should I change dosage or approach and will my normal life ever come back? She said around 4 weeks to tell how the new dosage is working. So I am holding out hope.
@lsengara thanks so much lorissa good to know it isnāt just me ! Out of interest do your symptoms increase while going up ? Iāve been on 50 of dosulepin for 1 weeks itās a similar drug to nort and it hasnāt touched my mav yet 
Amy, my symptoms were the worst theyāve ever been during the first 8 weeks I was on nortriptyline (10mg). I was prepared for trouble when I increased to 25mg and then 50mg but not really, aside from a few brutal days that were clearly weather-related.
My two main symptoms are headaches and dizziness/vertigo/that grotesque woozy head feeling that I have such a hard time putting into words (and I am/was an editor!): I can say that it feels like being drunk, or like the ground is moving underneath my feet, or like floating, but that doesnāt come near to describing the hideousness. The severity of my symptoms seems to vary a fair bit from day to day, but the headaches have definitely lessened since I started the nort. There have been way fewer days that I have been strapping the ice pack to my head, for sure. The dizziness (letās call it), which is the symptom I would give anything to be rid of, is still everyday but overall, I have to admit there has been improvement, and since going to 50mg, despite a few awful days now and then, it is generally at a lower level, though not what I would call acceptable or controlled. I have a had a few days in the last 10 days where I was comparing how I felt to normal i.e. just one big step away from normal, rather than having completely debilitated as the norm. And I have noticed that I have only missed one day at the gym in the last 28. Before that there were quite a few days where I was too sick to leave the house at all. So while Iām not satisfied with how I feel, I have to admit there has been improvement, so Iām going to be patient and how a few more weeks go.
I want the nort to workāscanning the writings on the subject, it seems like some of the medications take a long time to work, and each dosage needs time almost as if itās a new medication. There may be a few people who have instant results, but I have this feeling that maybe some declare failure with a drug before itās had enough time to do its thing. I tell myself that I have had these symptoms for 2 1/2 years and only got a proper diagnosis of chronic migraine 5 1/2 weeks ago, so Iāve only really been in treatment for the condition for a short time, and I canāt give up hope yet.
I should mention that I might not be the best case for comparison, because Iāve been tackling the chronic vestibular migraine whilst recovering from being hit by an SUV (broken leg, severly injured arm, major damage to face and teeth, multiple surgeries, complications, etc.). The headaches and dizziness got much worse following that incident, sadlyāfor the previous couple of years I had just fought through them, though I knew there was a problem and the ruling-out process had begun with my GP (cardiac, inner ear). I was on a boatload of painkillers following the surgeries and that probably exacerbated the migraine and the medication-oveuse headaches, but there was no alternative at the time. Following neurologistās advice I am no longer on any painkillers and it is probably the first time in a decade that there is no Advil or Aleve in my system, so thatās probably a positive. Iām having a not-bad head day today so Iām feeling determined to find a way to get these symptoms to go away 100%, even if it means inching forward. I feel like I could do anything if my head felt normal every day!
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Thanks so much for the reply . Itās so hard to tell what causes increased symptoms when everyday is is symptomatic . Iām glad itās not just me who finds it hard to explain . I would say drunk is accurate but also for me I feel spaced out and far away from things . Also like my eyes canāt take in what Iām seeing truly a bizarre sensation . I am better than I was when this first hit as I havenāt missed the gym since starting meds but I havenāt felt anywhere near normal .
These drugs do seem to take a long time to work and also each dose increase u have to continue to wait . I am aiming to get to 75/100 and then see how it go. I def canāt accept these symptoms and live with them thatās for sure
My instinct is that when this condition is chronic/everyday, there may not be much point in trying to identify triggers until the symptoms are under control via medication. Apart from weather I canāt identify anything that triggers a day that is worse than the one before, and could drive myself crazy trying to catalogue potential food triggersāwhen itās possible that my migraine might not be food-triggered at all. I eat a fresh donut and Thai food and have a good day/next day, and then eat super clean w/plain vegetables and oatmeal and have a string of terrible days. So Iāve only made half-efforts toward the migraine diet so far, though theyāve been considerable sacrifices for me (no more caffeine-free diet coke, red wine, chocolate mostly). As a vegetarian Iām not willing to give up tofu or soy milk. I guess this post is not really medication-related except to say that I donāt think this condition can be controlled without medication when itās gotten to this point, and I continue to have faith in what the neurologists have recommended, so Iām willing to give any medication a fair shot, even if the gains Iām measuring are moderate rather than dramatic. Iād ingest a daily dose of weapons-grade uranium if it would erase these symptoms. And my neurologists didnāt talk to me about diet at all with the exception of the importance of eating a lot of protein first thing in the morning and limiting caffeine (and having it at the same time every day). Just trying to be really patient waiting for the nort to calm my brain down gradually and eventuallyā¦
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I think your right about triggers Iāve given up I donāt have caffeine choc or pain killers or wine but the rest is just far too difficult to figure out ! You actually sound exactly like me with the triggers so nice to know Iām not completely going crazy! I would take anything to eradicate symptoms I get so panicky as some of the symptoms feel so bizarre especially the spaced out feeling when Iām anywhere outside itās almost impossible to put in to words. I have faith in my doctor just wish I was an easier case to fix. Out of interest are you uk based ? If so who is your neuro . Hope today is a better day
For me, something about pasta, cheese and red wine dinners lead me to very obvious effects on tinnitus - I would get loud, pulsative tinnitus for a little while, a little while after the meal. Tinnitus is a very good marker for when youāve been a bit naughty
(yes I know, that kind of meal almost breaks every rule, but yeah ā¦ yum!)
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Iām similar in that Iām usually ok in the house, and going outside is the test of how I feel on a given dayālike there is this weird distance between me/my brain and the rest of the world. Iām in Canada, by the way. Hoping you have a great day.
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āFocal brain dysfunctionā that is according to www.thewaltoncentre.nhs.uk where youāll find a great information document under patient info called āmigraine - a comprehensive guideā.
Of course going outside isnt just difficult for MAVers. Question anybody whose been hospitalised for a good while. Very similar for them. Too much space one friend said. After a spell in hospital it was ages before she could comfortably walk her dog out in the middle of a field, she always had to stay close to the hedges. Guess they replace the walls indoors we use for balance when balance is struggling. This MAV is truly a ābalance disorderā and we need to remember Mr or Mrs Brain is always in charge, something we generally take for granted and quite rightly forget all about. Itās struggling to keep us upright.
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I get this all the time like Iām behind a screen everyday. I tried checking the website @Onandon03 but canāt see what Iām looking for ?
Go to website, then second blue tab from left āpatientsā, then in white down lefthand side āpatient information sheetsā or something like that. Click on that and you get alphabetical subjects, under M - for migraine. Helen
Thanks so much Helen thatās so helpful so much info about dissociation and it being cause by nerve dysfunction rather than anxiety . Thatās actually made me feel less like Iām losing my mind ! Also the dosage advice is brilliant seems 80 prop is the starting dose which is very reassuring thanks so much!
Iāve always found understanding a subject thoroughly brings it down to size. Removes the mystery. Takes away the fear. Alot of the time anyway. Glad you found the migraine guide useful. Might be worth you looking at getselfhelp.co.uk. Youāll find tutorials there on all sorts of related issues. Cognitive Behaviour Therapy, Anxiety and so on all designed so you can work through them at your leisuree, and skip over the boring bits that are already obvious to you at the same time. Might just help you get everything thatās going on at the moment down to size as well. Bit of downtime give it a whirl. Helen
Thanks Helen very kind of you I think for me reading that the symptoms Iām having are common makes me panic less . It still blows my mind in having constant migraines but I think until the medication works it will be hard to accept still always good to read tho x
How are you feeling? Did you go up on your nortriptyline?
Hi Lisa I went up to 75mg on dosulepin ( similar to nort but comes in 25mg tablets , 75 is meant to be the therapeutic dose for migraine . Itās been 9 days on that dose only thing thatās lessened is the consant visual shimmering / aura . But thatās about it 
not sure how long it takes to see change but Iām hoping after 2/3 weeks maybe Iāll feel something . How are u feeling ? Thank you for asking : )