Feeling worse and getting desperate

I have been hoping that maybe I was just having one bad day but its now been about week of me feeling worse and worse every day… it seemed like my symptoms were changing a bit since I started verapamil about 5 weeks ago but I am now feeling the worst I have ever felt. The rocking is back along with the feeling like someone is pushing me even when I am laying down, I also feel light-headed (but my bp is normal) and am having tons and tons of visual issues. I want to scream.Today was the first day that I felt really scared driving and that maybe it wasn’t safe for me to be driving. I can’t stop crying - I just don’t understand this and don’t understand why this is happening… not from a ?why me? standpoint but from a medical standpoint. I have migraines my whole life and even some bouts of the rocking feeling but never like this and never so persistent.
It just seems so vague even though I feel so horrible… my anxiety has gotten a bit better but I just don’t know how I am going to deal with this… I am so sad that my life has changed like this… another beautiful day and I feel like CRAP even while taking a med that is supposed to help!!!

This thing started for me in full swing on vacation in early August after a very short boat ride. So its been almost 3 months - does the fact that I am continuing to get worse mean anything?? like maybe its not MAV? My last MRI was last Feb after an unusual aura but not bc of vertigo. I will reschedule my ENT tests but should I see another neuro too?? Do I need another MRI? Maybe this is something else…Sorry for the ramble just really feeling incredulous that migraine alone could cause these kinds of debiliating and persistent symptoms. Should I go to So. Cal to see Baloh, the mayo clinic?? I am so desperate for an answer.

Has anyone out there felt close to being disabled by this an gotten better?

Sorry for the very depressing rant - I am just at my wit’s end here…

Alli

Hi Alli,
I totally feel your pain! I’m having some bad days right now too. I’m so depressed about it. I’m getting off the Cymbalta bc I don’t think it’s helping. It’s also giving me major gastrointestinal problems and HAIR LOSS!!! I went for a walk this morning with my 17 month old and felt like I was going to fall over the entire time. Just when I started to feel some relief and feel somewhat normal BAM! Rocking, rocking, rocking.
We will get better, it is possible. Hang in there! It takes the verap. a few months to really kick in. I talked to one member who is about 100% better but she said it took about 6 months on verapamil.
Take Care,
Elisha

Also, a lot of this started for me after a trip to St. Thomas and I was first diagnosed with Mal de Debarquement Syndrome. Other Dr’s have rebutted this saying it’s MAV but that’s ALWAYS in the back of my mind too. If you’ve had problems with migraines in the past, as I have too, and vertigo issues I’d be surprised if it were anything other than MAV. I think mine all really kicked in after having my second child, the flight just maybe pushed me over the edge?

Thanks Elisha - I keep thinking about Mal d’embarquement also… although my boat ride was so short - I had been on several flights within a week etc… Just seems coincidental to me but my neuro says no… with my history of migraine with aura this is all caused by migraine. It seems so hard to believe sometimes doesn’t it??
I am sorry you are having some bad days now and that the cymbalta isn’t working - how long have you given it?

Alli

Hey Alli,
I’ve been on the Cymabalta for about 10 weeks. At first I was fine with it but over the past two weeks I’ve had a ton of nasuea, heartburn, and an overall sense of feeling sick. I thought at first I had some kind of virus. As time passed I’ve spoken to many people and they all think it’s the cymbatla. The major hair loss is terrifying and that was the final straw. I’m going to start the “coming off” process tomorrow. I’m not giving up on the verapamil though! Back in May when this all started I was totally debilitated, the verap has made a huge difference. I hope this set back is just a “flare up”.
I hope tomorrow is better for you!

I know exactly how you feel too :frowning: I’ve had a rough few days as well… I am to the point where I’m contemplating if I really do have MAV because I’m taking care of myself, avoiding all triggers in the “heal your headache book” taking my preventative meds and still feel like crap with new symptoms on top.

It’s so frustrating and like you, I’ve spent many days [and nights] crying. I just want my normal life back and answers. I think it might be worth it to see another neuro if it gives you piece of mind and won’t put a big strain on your wallet

Alli,

I just wanted to try to reassure you that it can be MAV, even if it is persistant and unrelenting like this, and it can still get better (promise!) because that’s exactly what happened to me. I remember feeling EXACTLY like you, and I remember thinking that there must be something else, more sinister wrong with me, like a brain tumour or something.

I had intermittent episodes of vertigo over the space of a few years, where it just lasted a few days at a time, and then resolved fully each time, then in Dec 2009 things kicked off, and it was HORRENDOUS and all the time, with new symptoms coming and going, and then just when I felt I was starting to see a slight improvement I would go back to square one. This went on for well over a year, but after 18 months it did all go away (thanks to finally finding a combination of medication that worked for me). To be honest, after such a long time I was almost resigned to never feeling normal ever again, so it is absolutely wonderful to feel ok most of the time (I still have other migraine problems unfortunately but they are a walk in the park compared to the vertigo and dizziness).

If I might make a suggestion, it would seem clear to me that you’re not on the right medication for you, or at least not at the right dosage yet. Are you able to increase it, or change it? Also, what lifestyle/diet changes have you tried? It can just be a case of trial and error with these changes and finding the right meds. I know it’s a really long haul to find the right combo for each person, but it can be done, and the vast majority of people on here eventually find something that works pretty well for them. (And also remember that most people who make a good recovery don’t hang around, so you tend to see a skewed perspective on here, as it tends to be more of the people who have a hard time of things.)

Take care.

Just interested in those of you feeling worse. Have you been doing more physically and/or mentally as you battle through this bad spell you are having? Have you rested at all? I always get worse the more I try to do. Beech, when you finally got better, did you rest to do that or carry on at the same pace and just take the meds?

Christine

— Begin quote from “cmoc”

Beech, when you finally got better, did you rest to do that or carry on at the same pace and just take the meds?

Christine

— End quote

Hi Christine,

I had occasional spells of spinning vertigo when I literally couldn’t lift my head up off the ground, but they were only for a few hours. Once I was able to get up and moving, I always tried to be as normal as possible. I felt it really aided my recovery to keep going, both from a mental point of view (i.e. it distracted me, and took my mind off moping about how crap I was feeling) and also from a physical point of view (I felt that it was good VRT to keep stimulating my balance/brain etc).

Hey Alli!!! I sooooooo know how you are feeling. I had also become so desperate back in 2007, when we had no idea what was wrong with me. Hang in there with the verapamil, you really have to give the medicine time to work and it may actually be doing nothing yet, because perhaps you haven’t upped it to the amount you need. So try try try to be patient (I know that is so hard to do) Also Migraine HATES change of any kind. You will definately feel MAV rear its ugly head when any change occurs.So the fact that you have added in a medicine, has caused a flair in your symptoms!

Pam