Medicine 1 failed, now what?

Hi Julie,

Your story is very interesting, and very similar to my own. I too woke up one morning with this rocking sensation , actually only a few days before yours started, March 16th for me.

Can you link any stressful event, or something that would make you insecure or anxious prior to this kicking off?

For me, I had a lot of life changes at the time that really seemed to ignite this whole horrible episode,

Rich

Hi Rich!

YES absolutely, same here. It seems all winter I was upset, crying, not sleeping well, and very anxious. I was finishing up my senior year of college and my mind was in a million places, stressing big time. I knew I wasn’t quite taking care of myself emotionally (and physically, for that matter) like I should be. Also important to note I’ve always been an anxious person my entire life. And I did occasionally feel a little “floaty” even before the big episode.

Interesting to say the least, isn’t it? Sometimes I feel guilty for all the stress I put myself under, but it doesn’t help to look back and kick ourselves.

What are you doing for treatment rich? How are you faring?

:slight_smile: Julie

Hi Julie,

Its been quite difficult for me in all honesty, before this started I had just moved to a new country, new job, broke up from a long term relationship and then the Rocking etc… started

So I have had to somehow try and fit into a totally new place, whilst battling this horrid dizziness… the doctors over here in Switzerland have tried me on 2 meds. Sodium Valproate and Sibelium (flunarizine), both migraine preventatives. The valproate didnt do anything, however the Sibelium did seem to slightly decrease the rocking, however it gave me depressive feelings as a side effect, so had to stop that.
The doctors here have basically said they can do nothing more for me, they think its MDDS and therefore is not treatable, and it will go of its own accord , apparently haha

I have arranged an appointment with Dr Surenthiran back in the UK next month and finally hope to make some headway against this condition. When i mention the likes of nortriptyline to the docs here they are baffled as to why it could be used to prevent migraine so its like hitting a brick wall here.

I have been battling with the idea of CSD, MDDS, MAV. Its so confusing though, because anxiety or stress can kick off MAV, however CSD is anxiety or stress also, and the same for MDDS.

So god knows what we are suffering from!

hope the zoloft helps you though, keep us posted

Rich :slight_smile:

Yikes Rich! I know it can be overwhelming since MAV/CSD/MDDS are all such fuzzy diagnoses. One of the things I’m learning is trial and error thru meds. Of course wait and talk to your doctor in the UK first, but if a few migraine meds haven’t helped, perhaps try an SSRI (like Zoloft) to treat the CSD route. From what I gather anticonvulsants/blood pressure meds/norttriptyline are used for migraine, and SSRIs are for CSD. You sound like a trooper though! I think I would fly home and skip moving; good for you for persevering in trying to get settled in a new country. All you can do is keep trying to find a doctor that understands and will help you pursue the medication route. Keep me posted on you! I’m rooting for you. I will keep posting about Zoloft too. Take care :slight_smile:

Julie

Hi Julie,

How are you doing on the zoloft? Are you increasing your doses? That’s my next med if the Nort doesn’t start working better on the rocky boat feeling.

Hi Kathy,

I’m struggling on Zoloft to be honest. It has definitely increased my dizziness worse than the nortriptyline. That said, I’ve only been on it for a full week. Apart from the increased dizziness and a smidge of jitteriness (he said that was to be expected), I haven’t had any other side effects, so that is a positive. The nori had elevated my resting heart rate quite a bit which freaked me out. Had him start me low on Zoloft at 25mg for two weeks, just so my body and brain can get used to having it in my system. He said the therapeutic dosage range of zoloft is 50-200mg so I’ve still got a ways to go. I anticipate it’ll take me at least 4-6 weeks to see any sort of improvement. Like nori, I’ll give the Zoloft 3 months before trying something new. Fingers crossed for this one!! Patience is the name of the game, although I’m not too good at that :lol:

How much longer do you think you’ll stay on nori? What dosage are you at now? Still having some rocking/floaty feelings?

All the best
Julie

I hear ya on the patience. I want results now not later lol… Sorry the Zoloft is making you so dizzy. Nort did that in the beginning and went away in 7-10 days. Not fun I know. I hope this med works for you. Hang in there, it should get better. Do you go up by 25mg increments with the Zoloft?

I’m going to try to stay on the Nori for another 2 months. I am now at 70mg… I increased 10mg per every 2 weeks, but stayed on 60 for about a month. 70mg is it for me. If it doesn’t get rid of the rocky boat feeling then I will try to add Zoloft. I can function like I am right now and am so grateful for all that I can do.
I just want that 95%. I honestly don’t remember how “normal” feels any more. Some day :lol: Have a great night!

From what I gathered from doctor Rauch, most patients go up on zoloft in 50 mg increments, but I’ve chosen to go up in 25s. I have my hopes up for this one, just riding it out until it hopefully kicks in :slight_smile:

Staying at 70 for a little bit sounds like a sound choice. I definitely think you’ll know if nori is going to get you to 100% by then. Haha I know exactly what you mean about not remembering “normal”. Somedayyyyy :slight_smile:

Keep me posted on how you’re feeling and I’ll continue to update about Zoloft!

Good luck Julie! I hope the Topomax words for you. Let me know how you are doing. :smiley:

Hey all

Figured it was time for a little update. My frustration is at an all time high. I’m now up to 150mg Zoloft and ZERO benefit. In fact I actually feel incredibly worse-- intense head rushes, much more intense floaty head symptoms, and extreme exhaustion. My doctor (rauch) recommended riding out the Zoloft to the max dose, but each increase is making me feel exponentially worse.

I am beyond upset about all of this, as I though Zoloft could be my magic bullet. I do remember feeling much better than this OFF the medicine.

Thanks for listening to me friends!

I’m really sorry to hear this Julie- when I tried Prozac and Lexapro, they made all my symptoms 50 times worse- maybe you can try another ssri- a lot of people on here have had luck with celexa?

Thanks so much Sarah. That’s a great point that I hadn’t thought off. I tend to get into hopeless thinking when a medicine fails and think that I will never heal. However maybe another SSRI would have a better benefit. I’m going to begin coming off Zoloft soon and then give my little head a 2-3 week rest and then I’ll go back at it with another SSRI. Thanks again Sarah, your words mean a lot :slight_smile:

It’s also interesting to note Zoloft has had no effect on my mood whatsoever. I’m not feeling any less sad than before I started it. Perhaps another sign that the Zoloft didn’t work for me.

That is interesting about your mood- did the nortriptiline help your mood at all? If it did, I wonder if you could try amitriptiline, which is similar? What other meds have you tried?

I tried nortriptyline for 3 months with no MAV or mood benefit. Doctor Rauch thinks my case sounds more like chronic subjective dizziness as opposed to migraine, so I’d assume he would trial me on another SSRI next. The migraine diet hasn’t helped at all either, so that’s another point in the CSD column.

how did your symptoms start? what are your main symptoms?

Sorry to hear that the meds didn’t work for you. How are you doing on the Setraline? I am about to add that to my Nort to see if I can get rid of the rest of my symptons. Are you tapering off of the Sertraline? I hope you find a med to help soon. Hang in there. I know its discouraging, but you will find your magical drug :smiley:

Sorry to hear that your trial didn’t provide you relief. We can all understand how you must be feeling. I am on my first med trial myself and unsure if it’s really doing much so I’ll probably be on the next soon enough. I am on pitzotifen which is meant to be highly sucessful also, but we are all different. It’s unfortunate that it’s not one size fits all. I have done my share of reading re how many meds people tried before finding relief and honestly, quite often the answer was LOTS. So don’t lose hope! As hard as that is. It seems like with med trials it’s a “dust yourself off and start again” scenario. Focus on the fact that you have a diagnosis, it’s not a mystery what is going on SO there will be a solution for you. It will just take time and patience. We are all here cheering you on! :slight_smile:

Aussiegirl, Kathy, and Sarah… I can’t express how much your support means. I just read your comments on my phone in the doctor’s office and you truly brought a smile to my face. It’s a comfort to know we are all dealing with the same beast. And yes, as you said Aussiegirl, there is a diagnosis so it is just a matter of time and patience. It is true that we are all so different in terms of what helps it. If only we could all be cured with ONE drug! If only! But fortunately we all have each other to lean on when the going gets rough.

Kath, I am tapering off the Sertraline. I’m currently at 125mg and Rauch said to go down 25 mg every week, so it will take me until the last week of February to come fully off of it. Unfortunately it just didn’t agree with my system, which is a darn shame because it’s usually a magic bullet for a lot of people. My side effects never truly went away even after having adjusted to the dosage for a couple weeks. Sometimes I’ve had trouble sleeping through the night (I wake up 4/5 hours after falling asleep and then toss and turn until wake up time), but I always have extreme lethargy, increased MAV symptoms, and spaciness. I’ve always considered myself a bit anxious and prone to bouts of the “blues” and the Zoloft made me even sadder. None of that was letting up, so I called it quits at 150mg and 10 weeks (the max dosage is 200). Another med to cross off my list-- the only upside is now the list is getting shorter ;). My plan is to come fully off the Zoloft, give myself 3-4 weeks with no medicine to adjust, then I’ll reassess and try a new drug. If Rauch supports it, I say why not add Zoloft to your regimen. My experience is not what yours may be like. And worst case scenario if it doesn’t agree with you, you can always come back down off it. It might be nice to clear up that last 15%! Keep me posted, my fingers are crossed for you darlin’.

Sarah-- my main MAV symptoms are the following: very heavy head (my eyes feel “heavy” and “sluggish”), feeling spaced out (I feel the need to stare because my eyes feel lazy), motion intolerance (when I move my head or move my eyes it takes my brain a few seconds to catch up and I get the floating, rocking on a boat feeling), slow reaction times (from the dizziness of course), and lightheadedness (I’m prone to head rushes too, when I stand or bend down I get a wave of floaty vision). It all began for me late last March (2012). I had always felt a speck dizzy, but chalked it up to maybe drinking too much water, because I am a hydration queen ;). I was going through and incredibly difficult emotional time-- lots and lots of anxiety and depression, and I woke up that morning in March and knew something was wrong-- all the MAV symptoms were in full swing.

Hey guys!

Haven’t been on in a while, so I wanted to pop my head in to say hi :slight_smile:

I’ve kind’ve given up on medicines for a while. They were making me so much worse and unable to function day to day, with the addition of unwanted side effects. So I don’t think I’ve given up on meds all together, but I needed a break. Since I’ve stopped trying to correct MAV, I’ve made a bit of peace with it and just accepted it as part of who I am. Don’t get me wrong I still have REALLY bad days, like yesterday and today, but it doesn’t look like it’s going away any time soon so why fight it? You know?

I’ve taken up a new workout regimen, crossfit, it’s so tough! I have to take breaks and slow down sometimes because of MAV, but it is feeling great to get some of the weight off that I put on when MAV hit. I’m not quite following the migraine diet right now, just eating very clean. The migraine diet never seemed to help much for me anyway. I never thought nuts and avocados could taste so good after going months without them ;).

I’m learning a bit more about what triggers me as well. Anxiety is probably my biggest factor. I’m going through a lot of changes right now and the stress adds such an enormous factor onto the MAV. Then of course, changes in routine-- so adding crossfit to my life and cutting out all of the junk I’ve been eating has added to it as well. Lastly, OVERSLEEPING big time makes it out of control, I can’t get out of that heavy heavy fog if I oversleep.

So what are all your thoughts? Think I’m on the right track? Dr Rauch says MAV waxes and wanes over the lifespan, do you all think it’s worth waiting for it to abate or should I continue on the medicine train?

Also, tell me how you all are! Dying to hear!