Thank you so much for these encouraging stories. I am a 36 yr old mother of three. I have just discovered this amazing site after suffering 2 of the hardest years of my life. I now have some hope that I can also find a cure and return to normal life. My story is similar to most. I have travelled far and wide visiting doctors and specialists to no avail. My symptoms include a terrible pressure in my head accompanied by constant dizziness, lack of concentration, brain fog, lethargy, visual disturbances and the debilitating headaches/migraines. Getting out of bed is a challenge. Every simple task has become difficult. I have seen Neurologists, ENT Specialists, Vestib rehab specialists, Chiros, Osteopaths, Acupuncture gurus, Neck Specialists. I have had MRI, CT scans, Blood tests, Balance Tests… No answers. I come out of each appointment so dishearted but continue to put on a brave face for my three young children. It is such a battle…and no one seems to understand what you are going through and I sometimes think my closest friends are over hearing about it. So I no longer talk about my condition and pretend things are ok. At the moment I am continuing with my VRT therapy at dizzy days clinic in Melbourne and seeing a Neurologist who has trialed me on a number of medications for MAV. Inderel, Epilim, Sandrimigran made me feel worse. He has a number of other medciations he wants me to try. I am really concerned however about the terrible side effects common to these drugs. Has anyone tried Amitriphyline or Topamax with any success? I am seeing my neuro next week. Fingers crossed he has a drug that agrees with me? Thanks again.
Welcome to the forum. A number of people here have had success with amitriptyline (and nortriptyline, very similar) and Topamax. Check out the success stories thread.
I wish you the very best. I know others have found success on Topamax and amitriptyline.
Your story could be any one of us - nearly all been through searching for answers to our dizziness & seen countless specialists. No wonder you are so disheartened - two years is a long time to still be searching for a med that will help plus the fact that you have your children to care for. You will get there I’m sure, and don’t be scared of trying the drugs - I’m now taking Prothiaden, after trying some of the others without success (amitriptyline, propanalol, nortriptyline) and feel I’m just getting my life back after 16 months. Being very careful to start on a very low dose & up by small amounts has helped my body get used to the med. I saw Dr Granot in Sydney last Nov. as a last resort (living in Adelaide) but worth the journey to see a dr who knew about MAV. I hope your neuro is able to help you. Let us know how you get on.
So great to hear you are getting your life back…fantastic news. I have written down the name of the doctor in Sydney and the drug that is helping you. Every bit of information is a bonus. It is hard to find a doctor who truly understands about MAV. GP generally put it down to depression, and most specialists just put you in the “too hard basket”. I saw my Neuro last week and he is trialling me on Endep (amitriptyline). Because I am so sensitive to medication he has put me on a very small dose of 10mg at night. I am to increase dosage after 2 weeks. I have also just started a large dose of magnesium and a natural drug called tebonin (which is supposed to be fantastic for vertigo and brain health). I have actually felt ok for the past 5 days …maybe these supplements might be doing something? I am going to see how I go on the Tebonin and then trial the Endep in a couple of weeks. Thanks you for your support…I was so excited to see your response I nearly cried!!!
Like barb I am doing so much better now on 100mg of prothiaden. I was on amitriptyline but it had too many side effects. Definitely ask him about prothiaden it’s side effects are minimal. It may take a while to get to a therapeutic dose so be patient. Let us know how it goes x
Great to hear from you. I spent 2 years thinking I had labs as well. Kept looking for another diagnosis because I was just not getting better. Was diagnosed only 2 months ago with MAV! Hooray… at least I know what I’m dealing with now. I am so glad you feel much better and you have found a drug that agrees with you. The side effects on these drugs really worry me. I seem to be really sensitive to them. But I will trial prothiaden if the Endep causes problems. Thanks for the tip. I really am excited that some people are beating this shocking condition. Keep in touch. Kylie xx
Just started amitriptyline this week. I feel so dizzy and tired!! My vision is blurry as well. Not a good start. Do you know how long I should trial this drug for?? Do the horrible side effects get any better. Hope you are well !!
This is my first time posting on the board, although I have been a lurker for a couple of years. We sound very similar, as we are the same age and have had this illness for so long (for me it’s now more than three years). I also live in Melbourne, and I saw Kate at Dizzy Day. She was a godsend to me, as before seeing her I was diagnosed with vestibular neuritis (after 9 months of doctors constantly telling me it was all in my head), but she suggested that it was vestibular migraine, and she put me onto Dr Waterston at Cabrini. The VRT helped me quite a bit with the visual vertigo, but she suggested I would need medication to get it under control. I am a big fan of Dr Waterston, I have to say. He was the first doctor to acknowledge how unwell I had been. It was nice to hear that, as I did start to think I was going crazy, and like you I stopped talking about my condition to people as most just can’t comprehend it. Actually, if I didn’t experience this for myself I would find it hard to believe! I tried a few meds with Dr Waterston, but the one that worked the best was Prothiaden. It pretty much made me well enough to contemplate having a baby (the condition first struck me after a miscarriage), and I had my beautiful baby boy 5 weeks ago.Of course, while I was pregnant I stopped taking Prothiaden, and took Periactin instead. I improved quite a bit during pregnancy, but unfortunately a couple of weeks ago the symptoms started coming back. I’m sure the changes in hormones played a part, but I also believe it’s the lack of regular sleep and food that’s to blame. Anyhow, I’m back on the Prothiaden and am hoping for good things again. I started on 25mg per day and plan to work my way up to 75mg (my previous dose), but will go to 100mg if needed. I liked the drug because it gave me minimal side effects (a bit of disassociation for the first few days, some tingling in my fingers – although that’s also a migraine symptom for me – maybe a bit of dry mouth). It may be a good one for you to try. Good luck, I hope you can find a med that helps you.
Hi and welcome Kylie (although sorry you have to be here),
Try not to worry about side effects from meds - can they be any worse than you feel now??
I’m in Sydney and have seen both Drs Halmagyi and Granot - both excllent. I hear good things about Waterson too.
Halmagyi likes Prothiaden and that’s what I’m on. It’s not doing spectacularly well for me right now so when I see Granot again in a few weeks I’ll see what he has to say.
There are many, many different meds to try and as you read through the boards (particularly the success stories) you’ll see that it can take some trial and error and tweaking.
In the mean time try and get a ‘migraine lifestyle’ in train. Moderate exercise, plenty of sleep (going to bed and getting up at the same time each day) and generally trying to keep things fairly low key (less stress) and on an even keel (don’t change your routine if possible). You can also try the migraine diet, although it doesn’t work for everyone, but try and avoid alcohol and caffeine at least.
I needed to be on a high dose of amitriptyline for is to be beneficial and at 50mg the side effects were intolerable. I am on 100mg of its sister drug prothiaden and hardly have any side effects. Where do you live? I know prothiaden is not prescribed in the US but is used frequently in australia. I live in the UK and was only able to get it as I was being seen by a psychiatrist who specialised in treating people with chronic balance problems.
I see you live in australia. I would give the ami a few weeks but also ask about prothiaden. It really is amitriptyline with much less side effects. I cant believe it is not used more widely.
Congratulations on your baby boy! I am also seeing Dr Waterston at Cabrini. I am also a big fan as he is the only doctor that truly understands what this condition is all about. I see him every couple of months. Kate is fantastic too. VRT therapy didn’t really help with the vertigo however I have amazing balance now!! I definitely think hormones play a huge part in triggering MAV. It is amazing how many women experience their first symptoms after the birth of their baby. Good luck with the Prothiaden. I am still struggling with Amitriptyline. If this does not work I will trial Prothiaden. Seems to be tolerated much better. Keep in touch.
Thanks so much Beck for great advise. I am going to request Prothiaden when I see my Neuro next. Don’t hold much hope for ami. Am struggling with it at the moment. Spinning out of control today, blurred vision and so tired. Going to be tough couple of weeks.
You are right…I really couldn’t feel any worse that any potential side effects the medications may cause. I am seeing Dr Waterston at Cabrini. He is fantastic. Just need to find right med. Am losing hope. I have tried so many!! I am on a migraine diet ( no chocolate, caffeine, citrus, alcohol). Fun! I go to gym as often as I can, even when I am dizzy. I am also seeing a neck specialist you has been really good. He does offer some relief. Ken Niere from Melbourne. Good luck at Neuro and finding a medication that works!!!