Mishy - I really feel for you. You’ve had this so long. I have had this almost 2 years, but I do believe that if it isn’t treated appropriately it can go on and on and on. It is possible to have it for years and years if you are not getting treatment. The best treatment seems to be migraine preventive meds, although it is sometimes difficult to find the right med for you, but people do find it and are 100% now. I do not live in the UK, but have read a lot of posts from the UK and heard that QUeens Square is good or is it queens center - I’m sorry I’m not sure. maybe someone from the UK is good. I also heard that the doctor you saw was very good. Can you see him again and get appropriate treatment now? I’m so sorry that this has altered your life. This is definitely a life altering illness. I wish you the best of luck.
Welcome Mishy. I too feel for you. There is a lot of good information on this site. There also is a good site put together by Dr. Timothy Hain who is located in Chicago. He has listed a very good sheet with several preventative medications. Perhaps you can print that and review it with your current Dr. As Lisa said, it seems like the only way to treat this is with a migraine preventative. There also a book called “Heal Your Headache” by Dr. Buchholtz. It focuses on diet and stress management and then notes that preventatives may be needed. This is the link to Dr. Hain’s site:
dizziness-and-balance.com/di … ntion.html
Good luck and please use this forum as much as you can. The people here have a lot of knowledge and insight and have provided me with tremendous support. Ben
Wow, you have been on a rough road for a long time. I wonder if the hormone change after the birth of your twins triggered this and you just haven’t been able to break free from it since. Whatever the cause, YOU CAN GET BETTER!!! And, everyone here would be happy to support you along the way. I would do as the others suggested. Get the book Heal Your Headache and get started on the migraine diet. Also, make sure you get the right amount of sleep each night by going to bed at the same time and getting up at the same time each day. And, find a doctor who understands migraine and is willing to work with you through migraine preventative medication trials to find the right medication(s) to help break you free from this miserable condition. You should also address your depression at the same time. This condition is VERY depressing. Fortunately, several of the preventatives used for the migraine condition are anti-depressants, so you may be able to address both issues with one medication.
It is time to finally get your vertigo and depression under control! Find a doctor as quickly as possible, and in the meantime, search through topics on this forum for information that might help you. Take care of yourself, and remember, we’re all in this together!
If it helps at all, I went with the wrong diagnoses for five years, with an ailment that they just tell you to suffer. At the end, I had been through a dizzy spell that had lasted over 18 months. It is very possible to experience the side effects from migraines for extended periods of time, especially when you are having migraines that you can’t feel, and you don’t know when one started or ended.
As others have said, find a doc that is familar with migraine treatment. Until then you can help things out a bit with what everyone else has recomended for life style changes (sleep schedule, reduced stress, diet, etc.)
I just read your post in the personal story section and your story sounds very similar to mine. I am a guy, so it was my wife who gave birth, but my symptoms started the same week my oldest son was born. He was born two months premature and spent a month in the hospital. My wife spent a week trying not to deliver him but wasn’t able to tolerate the meds. Everytime I walked into the hospital room, she had another IV or monitor hooked up to her.
You describe your symptoms very similar to mine. The main difference was that mine slowly got worse. My wife is blind, so we are still together, I am as dependant on her as she is on me, otherwise I might share this part of your story. I understand what it feels like to send your boys off with someone else to go do an activity because all of the motion around you will leave you curled up in a ball on the floor.
Just hang in there, you have what’s sounds like an accurate diagnoses, so now, you just need to find a doc to help you treat it.
Really glad you found this board. So sorry to hear you’ve had such a miserable time with this junk but as Marci said you can get better - a lot better. What medications have you tried so far? I also was diagnosed by Prof Halmagyi here in Sydney too. Are you living in Sydney?
Hang in there … Scott 8)
I think you should definitely see Halmagyi again. Can you let us know what meds you’ve taken for this so far? If we know this, we can give you some ideas of what you might try next. You could ask Halmagyi about this when you see him or simply grab a script from your local GP. Don’t give up. There are cases out there where women have been ill for over a decade and have seen complete resolution of symptoms.
Yes, this can MOST DEFINITELY go on for 10 years straight left untreated.
I know what it is like to have your whole life altered due to this condition. It is very depressing. I can’t imagine having this for 10 years. I have had this for almost a year and it wore me out mentally and physically. I found a medication that seems to control my mav symptoms for the most part. My flareups are minor compared to before the med. You definitely need to get on the right med and go back to that doctor. There is hope, please don’t give up. You have come to the right place for help. The people on here are awesome!!! Have you ever considered a phone consultation with Dr. Timothy Hain from Chicago? I sent him all my records and got a diagnosis with proper treatment. Before him, I was housebound and I have 2 young daughters to take care of. I believe hormones and stress play a huge role in this and I got that from Dr. Hain. If I can be of any help, let me know. I have 90-95% days now because of the proper treatment, even some 100% days. Please do not give up. I will pray for you. You are going to be okay.
I’ve just read your story.
What has happened to you breaks my heart.
I’m so sorry you have had such a hideous 9 years during a time that was meant to be a joyous new beginning.
I know you must be feeling all alone with this mav.I want you to know we are all here for you.
And now your mother is sick as well, she sounds like a wonderful grandma.
I also know us mav’ers just need a little understanding of our condition.
There are a few people here that have struggled raising their children with mav,
Some who have partners, some who don’t.
We understand the guilt of not being able to be “normal” and do those things other able-bodied people do with their kids and for them. Myself included.
My daughter is a wonderful soul, she’s 24 now Michelle, we are very close, always have been.
Children are so resilient and love you unconditionally, try not to be too hard on yourself it only makes this illness worse.
I’ve had some solid advice from people on this site, they are a caring knowledgeable group that will be happy to advise you on medications they’ve tried, Which will make a real difference in your life, also the support has lifted my spirits at times.
Try not to panic about trying a medication that has sounded like a nightmare for someone else here, we all react differently.
I’ve now found medications that are helping me get on with my life.
I made the mistake of poo pooing a medication that made things worse for me!
But now worry it may have put other mav’er off trying it, when it’s been a success for other mav’ers.
Try not to let that worry you.
It is a matter of trail and error, some meds can help one person while other people’s bodies don’t react well to them, its not an easy road, but it will happen in time.
Just remember one thing, you’re not alone anymore.
Jen from Brisbane.