So, it’s been a week being on 10 mg of nortriptyline. I know that’s too soon to say anything definitive about it, but I’m just wondering if anyone at first felt worse from this medicine before they started feeling better. Since I’ve been on it, all of my symptoms seem to have become magnified, especially the visual element. My eyes are now completely blurry without my glasses, which I’ve never had to this extent before. It is also making me more drowsy, as expected, but that seems to set off more dizziness, especially at night time. I’m having to go to bed much earlier. I read somewhere that if a drug initially magnifies symptoms, it may indicate that it’s working on the brain and you will eventually begin to adjust. Anyone believe that’s true, or is this a likely warning that this drug is not for me?
I am currently on 40mg. My doc said that whenever you start this drug or make increases dizziness will initially increase for a week or more. He recommends increasing by 10mg every 6 weeks. I have definitely noticed a great exacerbation of symptoms at each increase, and my body has adjusted. However,on 30mg I started to notice blurriness after I take it at night and I am now on week 4 of 40mg and still experiencing that. I’ve improved a bit on the drug, but am still very ill. I wish you the best of luck on this drug. what is your doctor’s goal for you in terms of dosage on this drug. what are your sxs at this time?
To be honest, I don’t feel like I am under a doctor’s care right now at all. I basically asked the doc if I could try this as he was only recommending supplements that have not done much for me. He called in 25 mg, and I had to ask him if I could start at 10 mg because I am med sensitive. I think I need to have a more in depth conversation about where to go from here as our communication has all been by email since my initial visit.
My symptoms are visual vertigo, and disequilibrium.
You are also in NYC, right Lisa? Are you seeing someone you like for this?
I think it’s true that it can take a while to adjust to a drug, so you can feel worse initially, however longer term it’s worth assessing whether the drug is simply making you worse. I have been through many, eventually finding one that works for me. In that time I have definitely experienced worse symptoms with a drug, and retrospectively realise that sometimes I wish I’d come off them sooner as they were just making me worse with no prospect of making me better. I took nortiprtyline and the fact it made me drowsy rendered me dizzier. I now know that any drug with heavy sedation side effects always makes me dizzier as feeling over tired is a trigger for me. I always start very low on drugs and build up as I am very med sensitive.
Sorry, don’t mean to hijack the thread but I can’t remember … did you ever have bad neck pain with your MAV – the sort that shoots down into the traps around the shoulders and all that? Did propranolol wipe that out? You probably weren’t on Nori long enough to get any pain symptom relief because of the increased dizz. Amitriptyline was OK for you though right apart from messing up your stomach.
Hannah, I fear this may be true for me too with the nortriptyline. As soon as I start feeling particularly drowsy the dizziness gets much worse. On the other hand, I have terrible anxiety (have had it all my life, well before this) so I figured it would make sens to try something that could combat both. I think I need to talk to my doctor again, even though he doesn’t seem to be too concerned with checking up on me…
Adrir - i’m living in CT now, and moved from NY last year. I am currently seeing Dr. Priesol at Mass Eye and Ear. In NY, I was seeing Dr. Lawrence Newman at St, Luke’s Roosevelt. If you are in NY, you should definitely contact Dr. Newman. He sees tons of MAV cases. He actually does not like nortriptyline, and prefers Zoloft, whereas, my doc does not use SSRIs, and Nortriptyine is his first choice. so hard to know what to do with these meds. Dr, Newman also uses Verapamil, which had few SE for me, but sadly didn’t help my sxs. I also have horrible disequilibrium. worst sx by far for me. can you describe your disequilibrium to me. how severe is it?
Hannah - so glad you found a helpful med. I forget, what med is that and what dose? what symptoms has it helped?
Scott, I don’t really get pain down in to my shoulders, sometimes pain at the base of my skull. I was much better with the amitriptyline but it messed with my stomach big time so I had to come off, otherwise I’d have stayed on it.
In answer to both your and Lisa’s question, the propranolol helped all my symptoms. Lisa, I take propranolol 90mg. It’s a low dose for migraine as I don’t tolerate drugs well so have had problems going up higher. Although it’s no miracle cure, it helps me enormously but I still get relapses brought on by triggers - however it does mean a lot of the time I can lead a relatively normal life as long as I am very careful what I eat - how much sleep I get etc… I tried a load of drugs with so many problems with SE’s, this is the only one I have ever been able to tolerate.
Hannah - thanks for your response. Wondering what were your specific MAV sxs before you were treated. I guess i’m just looking for hope, as my sxs are so severe, and I cannot imagine a drug taking them away (although I do know logically that drugs can take away our awful sxs).
Well, my doctor is now recommending that I get off this drug. It’s upsetting because the more medications I try the more I worry I’ll never find one that helps, but I think I may be on the same page as Hannah with sedating side effects making things worse.
Lisa – The odd thing is, I was actually taking Zoloft for anxiety when all of this developed. I got off of it to try Effexor (which didn’t do much of anything – though I was very fearful of going to a higher dose, so I got off at 37.5 mg), and now nortriptyline. My disequilibrium is mostly a feeling in my head, so hard to describe, but sort of like my brain is swimming. I feel very foggy and off-balance but I’m still pushing myself to do pretty much everything. The biggest challenge in all of this is my emotions. I am already prone to depression and anxiety so this has obviously compounded everything and it is all I can think about, even when I’m just relaxing. It is worse than the symptoms themselves.
Just adding my two cents.
I originally had that “hard to describe” feeling in my head. It was never spinning, but I felt dizzy and off…and I guess foggy…but then came the worst stuff…the insomnia, the depression and the anxiety. Lord!! Then came the daily headaches. I can totally relate to where you say you couldn’t think of anything else. I felt the same way. My journal is so depressing marking every day with so much effort to just exist and make it through. I tried several drugs (lexapro, effexor, propranolol, remeron, amitriptyline) with some of them I had temporary help or lessening of symptoms, but none of them had a lasting effect until I started taking Cymbalta. I’m now on 40 mg Cymbalta, with 15 mg BuSpar daily. I split both doses morning and night. I am about 85% better, and pretty much live my life as before. The difference is I frequently notice my dizziness/visual stuff and occasionally take Klonopin when I get break through anxiety and dizziness…which cleans it up pretty well. I notice over time it seems to continue to get better…but it’s a slow go. My dizziness got worse on BuSpar for about 2 months, and then leveled off to minor …
These things seem to take time for the brain to adjust.
Sorry only just saw your post. My situation re symptoms was potentially complicated by the fact this may have started with vestibular neuritis which caused an upsurge of an underlying migraine condition which then became MAV. In the first two years my symptoms were very severe - I had thick, pea soup brain fog which made it very hard to think. I had lots of ear symptoms - intermittent crackling, smacking, thumping, pulsatile tinnitus, pain in my ears and constantly full ears. I had constant dizziness - which was a combo of severe lighheadedness and a generalised dizziness, namely disorientation. This was made much worse by visual stimulus, I couldn’t go in a shop without becoming violently dizzy as looking at things on shelves or rails made me very ill. At eight months I developed constant vertigo, a sensation of moving when I wasn’t which was helped by walking around but constant on sitting or lying down. I also had sensations of being pushed from behind, or pulled up, or dragged to the ground. I occasionally had spinning vertigo attacks. Photophobia kicked in later on in the condition - a constant problem with light and particularly sunlight (this is still a big problem.) There was also intermittent visual and aural symptoms - blurred vision/visual auras (rare,) a visual sensation that things are too dark. I also suffered with hyperacusis intermittently. I also suffered migraine pain in the form of pain in my face/sinus area and head. This was also intermittent.
In short I was a wreck and started to lose faith I would ever get my life back. I was unable to work and mostly unable to socialise although I did continue to go out in to the world, it was just very hard. I do remember being driven to a shop by a friend. We sat in the car park outside and were about to go in when I realised I was too ill to face it. I was sitting in the car crying my eyes out as I realised my illness was so bad I couldn’t do such a simple thing.
Things started getting better around the two year mark. I believe it was a combination of the propranolol,learning my triggers and avoiding them, a nightguard that stopped me clenching my teeth and time. I remember the first time I walked through a park and felt almost normal, clear headed, no disorientation, no vertigo. I could barely grasp that after so long it had happened.
I’m by no means cured Lisa and still suffer with symptoms and get relapses. I am in and out of a relapse now, however my symptoms although they can be severe, are different. I have been back at work freelance (so have time off inbetween jobs) for 6 years now. I’m not saying it’s always easy, but I am able to do things that in those first two years I would never have believed were possible.
The thing to remember is that however violent, disabling and dreadful these symptoms can get, they are simply migraine. It doesn’t feel that way as it almost feels like you have become the illness, it is part of you and going nowhere - it’s so severe that it begs the question how could I possibly feel like this and feel well again? However, migraine isn’t curable but it is controllable, find the right combo of drugs/changed diet, lifestyle changes and time and the symptoms can be got under control and you can feel well.
I tried 8 drugs before hitting on propranolol. All of those drugs didn’t help at all and mostly made me worse. Although I still suffer symptoms and relapses on drugs and am never 100% normal, I know people who have been extremely disabled by this, found the right drug and are pretty much back to where they were.
You will get better Lisa, this too shall pass.
Hannah - It was so kind of you to write that to me. I will save that and reread to give me some hope. I wish you all the best, and hope that you eventually get close to 100%. Please be in touch.