Hi all. I’m totally new here and suffering so much that I named my username “suffering”. I started having mystery symptoms of constant motion sickness and nausea the year I hit menopause at age 53-54. I wondered if it was related to hormones. Long story short, after going to PCP, ENT, Audiologist, Physical therapy…for 15 months of getting dismissed by docs and my PCP treating me as if I was “mental” and needed anxiety medications. I know this is not caused by anxiety! On the other hand all these horrid symptoms are certainly giving me anxiety!! I have hardly been able to function feeling horrid nausea and dizziness all day every day. (I work as a teacher and have a son).
After 15 months of going from one doc to the next, a friend took me to a local doctor from India. I wrote my list of symptoms and for the first time someone said I had “Vestibular migraine”. Having sensitivity to meds, he put me on 50mg Topiramate in November. I took it for the 6 weeks like he said but it made my condition worse. I went back to him an in January he changed my medication to “Lamotrgine” which is known to help with MAV. I’m now four weeks into it, titrated up to 100mg and no change. Same horrid symptoms feeling nausea and motion sickness and neck pain. I am miserable. He wanted me to double dose to 200mg a day after the first month on 100mg but I feel it is not doing anything. I feel if I go back he will also not be very supportive. I begged him to not give up on me. I’m so exasperated of seeing all these different doctors who just cannot figure this out. They seem to just “label” with this or that saying I have anxiety about health and I’m out the door. How many people have I made rich and self poor? I was even sent for an MRI which came back negative so they say there’s nothing “wrong” with me anatomically. I was left with a bill of $900 to pay after insurance coverage. (I live in the United States).
I have completely lost hope that I will ever get well. It is now 17 months, each time nothing has helped. I can’t travel, I’m waiting for years to take my son on a trip…Each time I go to the grocery store, I get nauseous. Each time I work on my computer (remote teaching) I get so nauseous I have to stop. I move from kitchen sink to stove, I feel sick. How can one function like this? On top I have a lot of neck discomfort/soreness/stiffness. Does anyone else have that as well? I’ve read that it could have a connection to this illness?
I recently discovered this website. I feel so grateful that here people have the exact same symptoms that I have and that I am not “crazy” like docs make me seem because they just cannot figure this out. I am so tired of drinking ginger tea and taking ginger root pills. Not sure if they do anything but I would do anything to try anything! I just can’t tell you how it feels to discover all of you who are on this site. I’ve been reading posts before I decided to join. I’ve also been reading how Amitriptyline has helped so many of you so I’m thinking of asking my doc to try that medication next. Though I am very afraid of it making me sedated during the day. I have to work as a teacher. I can only work part time for now and I barely can handle even that. Please tell me the drowsiness from Amitriptyline goes away in time? I hope so. I will give Lamotrigine another 2-3 weeks. I made an appointment with a new neurologist for March (it’s so hard to get an appointment) I am praying he is going to be supportive towards me. Up to now I have had absolutely no acknowledgment or support for my symptoms. I feel extremely down every day and in tears because I’m so exasperated of having the last year and a half with not one good hour. The quality of my life has reduced so much. I pray so hard each day that God will relieve me and find me some cure or relief for my symptoms.
Thank you for listening you all.