Why did you choose to stop the nortriptiline? did it helped your balance at all? that is my biggest hurdle to functioningā¦I think I read on here somewhere that you said your customers at work have asked you why you walk funny (was this you who mentioned this)? I was just curious how you replied to thatā¦it is a big thing I think aboutā¦to tell the truth or not???
Sarahd,
Yes, I tell them the truth. I would tell them that I have balance problems at times or something along those lines. I stopped taking the Nort because I didnāt think it was helping me. I thought that I was getting better on my own. I was wrong! But I was still not happy with how I felt anyway. It was definitely helping because about 4 days after my last dose, I had a major crash with some nasty dizziness and I knew right away that the nort was working.
Now you might wonder why I didnāt go back on it. I made a decision that Iād try and beat this thing without meds if it were possible. After endless hours of research on ways to replicate what some of these meds do, I found out that a consistant exercise program can accomplish this. It took me a long while to finally nail it down the right way and really channel MAV through some exercise and taking some vitamins. Itās actually really simple. But being consistant with it was the hard part. Not giving up was the hard part. I gave up a few times and went right back to being stuck in an MAV cycle.
I did have to give up things like getting drunk, staying up later than midnight on the weekends etc. Lifestyle change seemed to do the trick for me. But I had to do a lot of testing and figuring out to get it right though. Now Iāve figured out how to beat this beast and if i can help anyone than great.
Greg
When you told people you had balance problems, how did they react? Did they start asking a ton of questions? I am afraid to tell people the truth because then they will start asking a million questions and/or look at me like I am a freak- most people donāt know what these types of problems are. I have been using a cane for about 6 months because of my balance, and I say I have foot problems- I am afraid that the way I walk probably shows that there is more going on than that, and I am super self conscious because of it (and of course the cane itself). Ugh.
Did the nortriptiline help with dizziness or your balance or both? That is amazing that you have been able to achieve such great results with exercise! I walk and swim, but I do both lazily just so I can keep moving (I also have fibromyalgia which makes intense exercise hard).
Thank you again for coming on and telling your story. I would like to think that there are many people on here who are doing well too, but they are afraid to post because they think they will jinx themselves! You are an inspiration to us and I canāt wait to read your full story!
An update on my exercise regimen. On Saturday I cranked up the swimming and did 600 meters in the ocean (from about 250). It felt good and was hard work. But the next day the migraine kicked in full on with neck pain and just an overall flu-like feeling all day and into Monday. I swam again on Monday and it was bad again today ā so much so that I couldnāt go into work ā even though I dropped it to 500 m.
Itās obvious that swimming is really FULL ON for the neck and shoulders. I came across this really good article about exercise from the Migraine Trust.
http://www.migrainetrust.org/factsheet-exercise-and-migraine-10714
Iām pretty sure this is what has been doing me in most with swimming:
ā You undertake strenuous infrequent exercise which causes stiff, aching muscles which can then act as a trigger.
ā You start exercising suddenly with no prior planning which means that your body has a sudden demand for oxygen.
Even though I do have a āplanā, it was a sudden escalation with the 600 meters and man did I pay. I was breathing like crazy probably blasting my brain with O2.
Anyway, time to ease off and take it easier. Still waiting for the magical day when this migraine stuff just vanishes because Iām suddenly Mr Fit. Yeah right. :lol:
That article is helpful - thanks Scott - i wanted to āget exercisingā but am now thinking i should increase slowly.
I detest sports and games but do enjoy walking so i hope to increase that. The fittest (and slimmest) i ever was was when i used to do yoga 3-4 times a week along with a physical job and a healthy diet.
Once i have increased the walking i am thinking of slowly beginning the yoga again too, yoga is good because it is very good for every part of your body but you are not a panting sweating wreck at the end of it, plus i like that i can do it at home at my own pace (i have a excellent book)
Useful to know what aspects of exercising can be a trigger though, i wish this thing didnāt have so many triggers, sometimes i feel scared to even change my breathing pattern!
Couldnāt agree more! Last Saturday had a ārelapseā. Came out of the blue. Stood up & BANG had completely lost my balance, falling all over the place - grabbing on furniture to get around. Since I seem to be OK when walking fast I have continued daily walk on beach - need help getting from car, down steps, etc but once on the move feel good. Yesterday went for a bike ride - did 20kms. OK till I get off bike! (Have been cycling for quite a while so not not exceptional). Today I feel shattered - probably too much but my balance moving around is gradually improving.
Sunday I emailed Dr Granot because I was āpanickingā!! His reply: āThatās Odd! Perhaps you should come off the Topamax.ā Honestly, Iād rather keep going & hope the higher doses will clear things up. What does puzzle me is his remark about it being āODDā. Maybe not a normal side-effect of Topamax but as my balance was like this prior to any meds couldnāt it just be a relapse? Have other people had this type of balance issues?
Barb
Barb
You say you balance is gradually improving and these last couple of days can just be just a few bad days? Have you felt any better since the relapse?
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