1 year with no vertigo

I have always looked forward to posting something on the Success story thread that I started on the old website that is in the database. Whether I am in remission or cured or burned out I don't know, but I will say that I have had no vertigo since Feb 14 of 2014. That last one was the worse one that I ever experienced. Others have also said that the last one that they had before entering remission was quite severe.
I will give a bit of my story and try to remember all that I have done to lead me to this post. You can also do a search on my old threads.

When the vertigo hit the last time I was out in the suburbs at a home improvement big box store. A friend and I were on our way back to the subway when I got slammed out of nowhere. I popped a sedative and almost dropped to the ground. After a bit I thought I would try to walk as we were in the middle of nowhere, walked back,mostly uphill and I sat on a square before going into the subway. Sat down again on the inside of the subway building. Went down to the train and had my sunglasses on and tried to relax and breath. Got off the train and immediately started throwing up. How embarrassing. Made it upstairs to take a bus to my home. I can't do this,we got into a taxi and then got stuck in traffic. Finally made it back to my flat and then proceeded to throw up for around 10 hours. I lost about 2 kilos from this experience.

The next day I was to guest teach in another city,I have always been strong in facing this stupid condition and was determined to show up. My BF went with me,it went well but I was exhausted.

What I did next was stop taking any and all supplements except for Vitamin c ,I still take between 3 to 6 grams a day. I also take Magnesium Citrate daily. I remember reading that fasting can cause the immune system to reset it self. I also remember SS saying that we don't want a super charged immune system but one that is in balance.

I also tried my best to relax and release negative thinking. I had come to the conclusion that most of us are in a heightened state of awareness with our bodies and environments. Listening to every little tick and sound in our bodies. Which is understandable as we no longer trust our bodies due to MM. I decided that this constant monitoring was just creating more tension in my body that I did not need. Like anything else it is a learned skill. I am still not great at it but am better at letting go and having the attitude of screw it-I know that I can handle whatever it throws at me,that I will get through it.
I also meditate daily have for about 30 years and could not do anything without the love and support of my BF who is a source of strength and encouragement.

I am lucky to be living in Sweden where we have excellent medical care. I will list all of the things that I have tried that helped me and didin't.

I started out on SERC which didn't do anything except keep me on the thinner side. I tried anti virals they didn't do much for me. I did NUCCA which did help but did not cure me. I did JOH lite,not taking everything but also other supplements that I thought might help.I also tried acupuncture and had my first drop attack about a week later but had also actually started with a diuretic at about the same time which lasted about 3 days as I could see that was not for me.
I wanted to avoid any invasive surgeries.

I finally went to a neurologist and this was key to my recovery I believe. I went on Verapamil which helped a lot right away. I started at 120 I think but now take 360 every day. I also started taking Amitriptiline and at the highest was on 50 mg a day. I am now down to 25mg and hope to get off of it if things continue to go well.

The next piece of the puzzle for me was getting a mouth guard for TMJ. I have a fantastic dentist. She then suggested Botox which I now get every 3 months,this has also helped everything immensely.
I am also very lucky in that my BF is a shiatsu therapist and he gives me lots of treatments on my head and neck.

I remember praying can I just get through 1 week without any vertigo or dizziness,I remember the way many here may be struggling now and want to give some hope.
I didn't mean to write a book but wanted to put all this down as it may help someone else. I have received so much support and help from the people on this forum. It's not as active as it once was and many people have left but it is still here.

If I was new to MM I would start getting treated for migraine and see what happens.

My ENT who has been with me since 2008 has now moved on to another hospital,I spoke with her recently and she says that there is a new Italian doctor working at the old clinic who believes that Migraine can cause MM. I am going to try to get an appointment with him and will post if I find out any new theories.

My original diagnosis was Atypical Menieres- which basically means they don't know what it is or that it is migraine related. I had a history of migraines from the age of 12 until my 30s when they stopped.
I no longer get the headaches but now get visual auras,I am getting around 1 a month right now.

I had 3 drop attacks early on. All I can say is that I thought I was having a stroke,heart attack or was dying. Very scary.

I had progressive hearing loss in my right ear which suddenly speeded up and now both ears are affected. I have had periods where I lost the hearing in both ears,also very scary. Have been on steroids numerous times. I also saw a reumatologist as my sister has an auto immune disease. I tested borderline. With this doctor I tried a round of imnosuppresive drugs which made my hearing worse.

I never get much ear fullness but have lots of tinnitus in both ears. It comes and goes,some times it is like a couple of jet engines. I just try to ignore it and do something else.

My right ear is almost deaf now. I have a hearing aid in each ear which also has helped immensely. I probably have old posts about that lying around somewhere. Just not having to strain to hear has reduced a lot of neck tension that doesn't help anyone with MM or MAV. I resisted for a long time getting them mainly due to vanity and not hearing well with them,I recommend the Starkey models the open fit so what you can still hear enters the ear naturally and the sounds you can't hear as well are amplified.

Like lots of people and as someone has said -a perfect storm can be created or something might push us over the edge to get the MM or MAV ball rolling so to speak. For me it was job related stress. Incredible stress from job and home restructuring and here I am in a foreign country,etc,etc.


So that's my story so far,I hope this post although long might help someone.

James

 

Thanks guys! Nice to hear from the remaining old timers on here. Frank I'm glad you are continuing to do well.Lulu I'm glad I made your day! Bulldogs good to cyber see you.Thanks for the encouragement Vicki.

I guess one of the points I wanted to make for people is to try to get treated for migraine or do the migraine diet as far too many of us have migraine involvement for it to be a coincidence.Don't think headache,think of a neurological condition which starts in the brain. A good book which has been recommended many times is ''Heal your headache'' by David Buchholz--he states that he thinks migraine and Menieres are the same thing.