Well my epic trip is over after 48 weeks on the road. It was fantastic, but it wasnt easy with all his MAV mess going on I can tell you! All I can say is I feel like I have actually achieved something while feeling like a sack of shit, and in all the years of having this it has been probably he only really positive year for me. I still have exactly the same symptoms, but have had some better periods since mid October.
I know everyone tells you no to dwell on this, but having another focus really does help you to deal with it better mentally. Anxiety and thinking too much on this only makes it worse…and Im a key culprit at this!
Not sure if Topiramate has made any difference really in the improvements of whether that is just MAV waxing and waning. I’ve been on 50 mg for 4 months so have done a solid trial. Certainly haven’t had the miracle improvements that Rich had.
I have a review in a few weeks to decide where I head next with this. I really need to get this into the 90% levels for work purposes and quality of life (very anxious about job interviews with the room moving about urghhh). If I can get there and maintain that, I will be happy. I’m not expecting any miracles anymore. This is just the way it is I think and I have accepted that in the past year. What I do think though is there is always room for IMPROVEMENT.
Anyhow, back in the cold weather now and have my 1st sore throat. Can you believe whilst being away, apart from my MAV I wasnt ill once? Quite ironic that I’m actually quite healthy!
Best of luck
Hey Luke, glad to see you back! Agreed - you have to live your life the best you can with the MAV, good days and bad. I would note though that since you have been pushing yourself with the travels, etc, that now you can get back into a more regular daily cycle (sleeping, eating, etc) and then maybe see if the med is actually helping. You may find in retrospect that it helped you more than you realize.
Look forward to hearing about your adventures and seeing more photos if you want to post!
Welcome Back! I agree with Bonnie in that the topamax may have helped you a bit considering your whirlwhird trip. You are still on the minimun dose of topa at 50 mg. Would you consider pushing it more… possibly to 100 mg to see if this might take you all the way now that you are back and get into more of a routine “MAV friendly” schedule???
Just a thought…
I’m in agreement. How about pushing the topamax to say 75mg to start and see what happens? Glad to see that you got through your trip and I think the topamax probably had a good role in allowing you to do so without allowing your symptoms to get so high it put you flat on your back! You might find that your symptoms are at a different level at home on the topamax. But pushing to 75mg might give a little more. If I were you, I’d be looking to add TO the topamax instead of getting off of it. Just my thought. Good to hear from you
good luck with life and work and everything mate =)
Good to have you back but not because the migraine junk is still hanging around. I’m wondering if things will calm down now that you are back to a more regulated life? Try sticking to a daily pattern and see if that makes a difference (sleep etc). Have you had ANY benefit on 50 mg of Topamax? You’d think that if it were going to help you’d have some measure of success by now.
I’m off to Thailand on the 20th of Dec to swing in a hammock on Ko Lanta for 12 days. Hoping this head of mine cooperates.
Cheers … Scott 8)
Thanks for all the welcome backs and advice.
All - I will discuss with my neuro about upping the Topamax to 75mg. I have an appt in a few weeks. I did try upping it a few months back but it made me feel quite rough.
Scott - Its hard to tell if if the Topa has had any real benefit, as any form of better days are very up & down. At the moment ’ I feel my same old dizziness, funcional but with the usual rocking and visual dizziness. The benefit is nothing like I experienced on Pizotifen.
As usual is just a matter of pressing on with this. I hope you have a great time in Ko Lanta. I didnt make it there, but is meant to be lovely.
Glad you made it back. don’t know how you do it, feeling as we do. that is pretty amazing. how do you deal, as I cannot even get out of the bed for the majority of the day. I realize that we all have varying degrees of intensity of MAV, but I remember you mentioned that you are pretty ill. any secrets? what are your symptoms? maybe things will settle down for you a bit now. I hope the higher dose of Topa does the trick for you. I know how hard you are trying with the meds. I’m hoping you have much better days
Welcome back. Your trip sounded absolutely fantastic and good on you for not letting the MAV interfere with it. With drive and stamina like that I’m sure you’ll have no problems getting a job . Hopefully as you get back more into a ‘normal’ routine you’ll start to see some improvement with MAV. Fingers crossed!
Well done Luke,
Whatever happens now in the future, you can have all that to look back on. Worth a million.