Hi all,
I am confused - with what Dr S is aiming for in terms as ‘getting better’ are we hoping that eventually some drugs will work and symptoms will magically disappear? Or are we aiming to get this horrid thing under control so it’s manageable? The thing that I am interested in the most is the light sensitivity. So my question to you guys who are better is - did your drugs plus the diet cure light sensitivity or did you use the tinted glasses? If you did use the glasses is it worth me investing do you think? I’m so confused?
Hi
I’m on Nortriptyline and after about a month, I was 85-90% better. I think it fixes the “migraine” problem and that includes light sensitivity and anything else. I wear sun glasses outside always, but no special glasses. So, if you can get the “migraine” under control then your symptoms should all be better.
That’s just my opinion but that’s the only opinion i’ve got. LOL!!!
I have just started on nortriptyline yesterday after my GP agreed to let me try a low dose while I wait for a neurology appt. I have been having a really bad time with the dizziness etc these last few weeks so I am praying that it helps. So far, after one tablet, I have noticed my heart seems to beat a bit faster and I feel a bit weird somehow. I am not sure if I am just anxious about using it… For those who do use it, how long would it take to see positive effects if it is going to help?
Jem thats how it was when I started Nori, it made me have a lot of energy during the day so it would feel as though your heart was beating faster.
I’m on the diet with 75% compliance and taking 60mg of Nori, I have found alot of improvemnt, around 85% but still have that rocky boat feeling when there are alot of flourescent lights around. The only time my eyes are sensitive to the light is if I’ve been inside for a long time then go out in the bright sunlight. Hope it starts working for you. Hang in there, it takes time. Wish you luck.
Thanks for the reply. How long roughly did it take for you to see improvements?
I know I am only on the first day but my dizziness is terrible. I am so worried about it all. I am encouraged that people have found it helps them a lot but just worried it won’t do the same for me. I am in the midst of a really horrible patch at the moment so any signs of improvement would be a relief from where I am right now.
after I increased doses I would feel dizzy and kind of spaced out for about 3-4 days then I would feel better. That happened with every dose except when I went to 60mg I was totally off for a good week, but now I am ok again. I started noticing improvements at 10mg… I had more energy during the day and my sinus congestion was alot better. It helped me sleep as well. As far as the rocky boat feeling, I basically only have that when I am working due to the flourescent lights and long hallways. Good luck…keep us posted as to how it goes for you. Hope it starts working quickly.
Thanks for the reply. How long roughly did it take for you to see improvements?
I know I am only on the first day but my dizziness is terrible. I am so worried about it all. I am encouraged that people have found it helps them a lot but just worried it won’t do the same for me. I am in the midst of a really horrible patch at the moment so any signs of improvement would be a relief from where I am right now.
Thanks x
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I would hedge a bet that the worrying is creating anxiety which is feeding the MAV monster… It could very well be your anxiety causing the dizziness spike and not the nori. Try to relax if you can in anyway.
Hi all,
I am confused - with what Dr S is aiming for in terms as ‘getting better’ are we hoping that eventually some drugs will work and symptoms will magically disappear? Or are we aiming to get this horrid thing under control so it’s manageable? The thing that I am interested in the most is the light sensitivity. So my question to you guys who are better is - did your drugs plus the diet cure light sensitivity or did you use the tinted glasses? If you did use the glasses is it worth me investing do you think? I’m so confused?
Many thanks for your time
Anna x
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Hi Anna
I too am under Dr S. He believes the brain is constantly trying to ‘heal’ itself and all the drugs are doing is slapping a massive plaster over the wound to allow it to do just that. But no, the drugs are not going to make migraine go away - there is no ‘cure’ persee, we are aiming for complete manageability of this condition.
The aim is to remain stable on your drug, probably for at least a year and then try to titrate down off the drug and to see if your brain can handle it and still remain stable without the drug - then you know you’re winning!
Hey muppo! Thanks for replying to my post how you’ve written it is a lot clearer - so basically we have to be in ‘the right frame of mind to heal’ but that is nearly impossible as our minds are so screwed & that’s where the drugs come in right?! I’m trying to be patient but it’s very hard - I have two toddlers that I look after on my own - my husband sat me down last night and said I MUST nap in the day with them otherwise I’m never going to get better so that’s the next plan! How are you feeling? I understand you had a massive set back poor poor you. How often do you see DR S? X
No problems. You must find a place to get yourself into where stress is at a minimum and you are being kind and taking care of yourself. I can only imagine what it must be like with 2 young children. I often think of all the mums on here and the mind boggles as to how you cope.
Your husband is right, you MUST rest during the day. Easier said than done when the house is a mess, dinner needs cooking, laundry, shopping, tidying kids toys, phone calls, paying bills and all that other fun. But stuff it. You come first. Get a cleaner in once or twice a week to help with the house and lean on family and friends to help support you with the kids. Ship the kids off to nursery as soon as you can!!! Find people that can maybe take them off your hands for a couple of hours here and there. FIND HELP.
We all need people. I have been so fortunate with my family and friends who have been a life support to me. Plus my lovely other half David. I wouldnt be able to remain living in New Zealand if I didnt have amazing friends and him to help look after me ESPECIALLY since my relapse.
I’ve been stabilising over the past week (which I’m beyond grateful for) and I know this is due to David massively reducing the amount of stress I am exposed to (his ex wife etc …).
You MUST find time for yourself each and every day. End of story.
Agggghh muppo your so sweet I felt very honoured to receive a reply from you! I have read many of your posts and see that you have a had a long MAV journey - god this condition is a blighter isn’t it!
Yes from now on I’m going to be more nice to myself! Luckily my hubbie is great & I have 2 really good mates who I could always farm the kids off to . I am trying to be patient with the nori - I think I’m on week 6 & 40mg but my most annoying symptom is constant imbalance - will it ever go? Please tell me yes?!
Good to hear your stabalizing - long may it continue!
how you’ve written it is a lot clearer - so basically we have to be in ‘the right frame of mind to heal’ but that is nearly impossible as our minds are so screwed & that’s where the drugs come in right?! I’m trying to be patient but it’s very hard - I have two toddlers that I look after on my own - my husband sat me down last night and said I MUST nap in the day with them otherwise I’m never going to get better so that’s the next plan! How are you feeling? I understand you had a massive set back poor poor you. How often do you see DR S? X
I felt very honoured to receive a reply from you! I have read many of your posts and see that you have a had a long MAV journey - god this condition is a blighter isn’t it!