This Time vs Last Time

Hi Guys

Just wanted to get your thoughts on this one.

I’m coming to near the end of my massive travelling trip and I definitely feel like I’m getting worse. I’m not sure whether its 11 months ‘on the go’ which isn’t helping me, but I also feel like I’ve developed this horrible new symptom the past few months of real bad visual vertigo; when I look over at something and focus it’s like the whole world tilts and I’m tilting with a rocking motion at the same time. It’s also becoming more uncomfortable to walk.

Last time I had this I was on an SSRI, Citalopram from the start, and felt like I was improving gradually. I’m not sure if this was psychological, as it was assumed I had VN and I thought natural compensation was occuring. But I remember a year later I did feel better than when I first got hit. When I added my MAV med everything cleared up in a few months.

This time everything seems to be going the wrong way. I feel I’m making no progress. Could it be the Topamax I’ve been on? I’ve only had about 3 decent weeks this year that I can remember and one of those was on Verapamil. After that it just gave me horrid constipation and worse dizziness.

I don’t think it helps that I’m worried about how I’m going to work with all these new added symptoms when I get back…it’s quite frankly just sickening to think about it.

I’ve had a great time on this trip, but it has taken a massive amount of will power and pain to do it. I just hope things settle down when I get a normal routine again. I’ve got an appt with my neuro in December where I’m going to discuss maybe going back on Citalopram for a few months and then adding Pizotifen again. I tried it last year, but maybe I need to be on the SSRI long term to kick this junk combined with a MAV med?

Hope you are all feeling better. Especially pregnant Lisa, sorry to hear things are so bad. I feel for you. Just hang in there.

Luke

Luke ,

I really think things will settle down when you are in a “normal” routine and have your sleep patterns in order, diet in order, etc. You are a very brave soul to have done all you have done over the last 11 months.

Perhaps once you get settled and then can give the medication a chance to work with a normal routine you may see some difference or at least if you change you will be starting a new with some routine in your daily life .

The anxiety in and of itself can do nothing but add to the problem or at least that is the case with me perhaps you can get something to settle that and then you will also see some progress.

Wish you the best of luck for better days ahead.
Timeless

Thanks for the kind words, Luke. i’m sorry you’re not doing well. It is amazing that you were able to do all that traveling - you must be a such a strong person!! I give you a lot of credit. I think it’s good that you’ll be seeing a neurologist in a few months, at which time you’ll be settled down and back to a more regular routine, so you can see how you’re doing then. Are you off the topamax? I wish I knew which med would work for you. hate that it’s such trial and error. Have you ever tried a tricyclic. Seems successful for many, but who know what will work for us. I really need to get a hold of a crystal ball.

Hi Luke,

Back from just the one week in Corfu and like you, it took every ounce of willpower and determination to just get through a week!! By day 3 felt fluey and legs wouldnt work so we got a quad bike! Laid on the beach watching the sand dunes moving to the right the whole time! Hired a bike to get to the beach as legs wouldnt work. Went out for meals feeling so dizzy I was sweating (ladies do sweat!). Made it home and had 6 days of continuous migraine. Exactly the same thing happened when I got home from holiday last year, a week of continuous migraine. At least this time, didnt get the severe vertigo attack! Been back just over a week and things have settled down and I am about to start on the Lyrica. Havent got a clue on how much to start with, but very small I think.

Just think, if you can manage with all that travelling, going to work in the same routine, not far from home will seem a lot easier. Maybe you need to try a different preventative. I have never tried Lyrica before but the neurologist seemed to think it was good for this stuff. Havent much faith but you never know!

Best Wishes
Christine

Christine,

Please keep us posted on the Lyrica. I hope it is the right med for you - you never know - this could be the one!! sure hope so.

Lisa

Hi Luke,
Really hope things settle down for you once you are home and regular.
brave of you to travel for 11 months…my body goes insane if I fly, so I have just stopped for now. I can’t bear the results that last for ages afterwards.
I have become a stay at home girl… if it is further than a few hours train ride I can’t do it.
I used to hop on a plane all over ,like taking the bus. Hate that this dictates my life.
Good luck with getting back into the routine and your new meds.

Penny

Hey Christine

Quad Bikes - wow! Do you feel better in motion? I hope you got to enjoy your trip just a little bit.

Ive just been Zip Lining though the jungle on a rope…I feel dizzy after doing it but the passive motion made me feel better. Weird eh…feels like Mal de Debrquement! Felt horrific last night and could barely walk in a straight line, but woke up feeling better today, but all the zip lining has left me screwed again!

I really do kill myself. I thinnk maye you are right - strict regime and stability is needed!

Good luck with Lyrica

I was thinking on the title of this entry just now, and am reminded of a conversation I had with my mother comparing the births of my children - to which she replied, you cannot compare one to the other as they are each different in their own way.

I wonder if the same would apply to migraine attacks/vestibular attacks.

Thanks Liza, most people seem to be on 150 mg upwards, I am starting on cutting a 25 mg tablet in half, pathetic or what?

Luke, I was very dizzy on verapamil too.

Yes thanks, did enjoy what I could of the holiday. We took the quad bike to the other side of the island, two and half hours, mostly uphill, windy roads, no traffic, no people. Felt fine on it, hot day, cool breeze. Am OK when moving although I was carsick as a child. Zip lining through the jungle on a rope! Go Tarzan!

Christine