Dear all,
A quick history as I’m a newbie to this community but not to the condition!
In 2014, I had my first 6 month episode after a 2 week bout of flu. In the end, Nortriptyline was the drug which reduced my symptoms to baseline level and enabled me to return to work full time.
In 2016, I had a 3 month episode after a severe chest infection, after taking Nortriptyline with no success this time, relief was found with Sertraline and I again returned to work.
in December 2016, I was diagnosed with VM and Visual Induced Dizziness by Dr Barry Seemungal at Kings Cross Hospital in London. Subsequently, I did trial Candesartan and Propnanlol but with no success and have remained on Sertraline as I’ve found that it keeps my symptoms at baseline even when I have a change in routine at weekends / during holidays etc…
Towards the end of January this year, I had a classic ‘migraine’ headache which passed after 4 days and left behind VM Episode number 3, which is ongoing. I trialled Pizitofen which completely sedated me for most of the day and then went on to Topiramate, increasing in 25mg weekly titrations to 100mg which I reached last Wednesday, Incredibly, since then I have been able to walk without feeling a push/pull after so many steps and am getting into my usual stride/speed and my other symptoms were ever so slightly starting to decrease.
But on Friday, I came down with a cold, developed painful sinuses and headache over the past few days and today symptoms have increased again! It feels like I’m back where I was 2 / 3 weeks ago…anyone else have a similar experience?!! I appreciate that Topiramate is a slow acting drug but how much does a cold/virus impact on it’s timescale / effectiveness?
I can oñly speak from my own experience of course and I would say that topiramate will not touch the symptoms of your cold, ie sinus pain, headache etc, but it will still be helping your VM symptoms. It is easy to blame everything on VM but we will of course suffer from other illnesses which will exacerbate our VM so don’t automatically think topiramate isn’t working for you, you would feel a whole lot worse without it I am sure! I think once your cold has subsided you will be back to appreciating how topiramate is helping you.
Thank you for your reply and reassurance :o) My cold has definitely passed now but I have definitely taken a backwards step in terms of my symptoms. However, it will still only be 2 weeks on Wednesday that I would have been taking 100mg, and I’m completely aware of the fact that it’s still early days due to the slow acting nature of this type of medication. It could still be at least 2 weeks, if not 4-8 additional weeks before I start to feel the true benefit / further reduction in symptoms!
Hi all-
Colds have definitely wreaked havoc on my vestibular migraines. This last one I’ve had for 1 week and 3 days. I still have congestion, especially post nasal drip and some messing with my inner ear. I’m still waking up with my right ear feeling full and pain off and on. It’s making me SO much dizzier, and it’s been constantly bad for over a week now. Normally my MAV dizziness is different in levels of severity every day.
For those of you who’ve read my posts recently, you know I have been trying to start Amitriptyline since February, and got nervous and kept putting it off. I was finally ready to try it last weekend and then caught this awful cold that my husband had first. I’m housebound already, can’t even get out to a doctor, but I’m not sure I should start the medicine this weekend with these cold symptoms. I have also had a mild fever this entire time with the cold, around 99.0 F. However I do get sweating and mild fever episodes every few months or so that aren’t related to a cold or flu. It’s hard to say if this fever is related to the congestion or not. It is lasting longer than those normal episodes I get.
Does anyone have any ideas or suggestions? Waiting until May to start Amitriptyline sounds ridiculous at this point, but I have started other medicines in the past while sick and that made the trials worse. I also have tried Amitriptyline before and know it makes me dizzier.
In the past it has taken at least 2 weeks or longer for me to get over a cold, somehow the MAV seems to make the congestion last longer than the average person. I usually have a 2 to 4 week setback.
Thanks in advance!! I’m so frustrated and am feeling lost at this point. I am so tired of feeling the worse dizziness from the cold and need a break, but I’m also really good at finding excuses to not start a medicine. But I also have told myself not to start it during a cold, but who would have thought I’d still be this congested…
Sorry to hear that Jess. This past week here, the weather has been horrible. Past monday, we had 80 mph winds and bad weather. Imbalance is kicking my butt. Push/pull and sudden head jerk movement like i Went forward in time for 1 sec with weird mild neck and head pains. I also have stuffy nose, sneezing, ear clicking when i swallow, and feels like my brain is shifting in my head. Today was the hardest day for me working with all this crap but im home and survived. I was tapering off diamox this week to 1 500mg a day so i can be off of it this weekend and start ami again. So i dont know if its the weather, coming off to 1 on diamox or combo of both. Maybe daimox was keeping a lid on things but i dont know. I been on ami in the past and it was fine for me but i dont know why im getting anxious to take it again. Im thinking about maybe starting off with.5 mg tomorrow evening and see how that goes. There is really no point holding off on taking ami when there is a good track record. I know you tried it in the past but try a micro dose this weekend and see how that goes. Cut it into 8 pieces if you have to. It’s better than nothing.
@Young_Lee Thanks so much for your response. So sorry to hear about your crappy weather. Bad weather never helps. A few weeks ago we had some bad weather roll in that bothered me too. I have felt the falling forward feeling too. I experience rocking from time to time, usually in the shower, but with the cold have felt it every time I stand up. I don’t have experience with the diamox, maybe it was helping? If you were fine with Amitriptyline before I’d think you’d be fine again, depending on how long ago that was?
Yeah, if I do the Amitriptyline this weekend it will be 1/8th of a tablet, so 1.25 mg. A pitiful amount, but I had already decided on that. The amount I had trouble with before was 2.5 mg. You’re right, a little is better than nothing! Thanks for the encouragement.
You can do it Jess. Who knows, ami can be your savior and if you can stick with it , you will be able to enjoy life again. My 1st day of taking ami, it was a weird euphoric feeling. I was already thinking of a success story to write on here and my mood was better. During that time, i didint know what this crap was and never heard of vestibular migraine. Infact, my ent doc mentioned it to me saying “i think you have vm”. I was like huh? I dont have a migraine and she said you dont need to have one. I have to thank her for at least getting me on the path that is relatable. To make you feel better Jess, my ent doc gave me some xanax for my anxiety. I was anxious to take a anxiety med which was to help my anxiety lol. It”s like a body builder is anxious to take protein supplement to help him become bigger and leaner.
@Young_Lee Thanks again for more encouraging words! I don’t even want a euphoric feeling, my body notices feeling anything different. And like all migraine brains and bodies, mine does NOT like any change. I think my doses will be too low at first to feel that though, lol. I know I’m not alone with the medication anxiety, a lot of people on here talk about it, but thanks for chiming in too. I’ve been on Xanax, 0.5 mg 2x/day, for 5-6 years now. The first neurologist I saw put me on it for the dizziness, at the time I didn’t have much anxiety. At first it helped me continue to work and reduced the dizziness to almost nothing, which I needed to do as my husband was still in school, but it was really a band-aid. It stopped helping. It was recommended I come off of it 2.5 years ago but I got 25% lower and had such horrific physiological withdraw symptoms that I couldn’t do it. I’m stuck on it now until I can find a medicine that helps the dizziness get better so I can attempt to face the withdraw. Maybe Amitriptyline will be that medicine.
Uggh! Everyone, this cold threw me for a new loop last night. I was considering trying the Amitriptyline this weekend despite being sick, but then last night happened.
Lying in bed trying to sleep I had a weird, new sensation in my head. It was in the smack dab center, like not near the forehead or scalp but right in the middle. It made me instantly much dizzier and nauseated and from that of course I broke out into a sweat. I had to sit up in bed for a little while and it eventually turned into a headache, but I think a sinus headache as there was pressure under my eyes but not around one eye and down the back and top of my head like my normal migraines. Today I still have a horrible headache and I think it could be both migraine and sinus. I know a lot of sinus headaches are actually migraine, but this is happening while I still have cold congestion and isn’t like my usual migraines as in pain location at all.
If I hadn’t put off trying the Amitriptyline so long I’d just wait another week for the cold to clear up. But this is putting me in agony I don’t know what to do! I am completely housebound and can’t get out for a doctor’s opinion. Please help!