I have been on this board for quite some time now, but have never posted. I mainly just read all the posts. Anyways, I have been suffering from Vestibular Migraines for 17 years. It started 8 months after I had my daughter in 2001 and it hasn’t left since. I had all the ear tests and went to many Dr’s who never knew what it was or how to treat it so I was told to just live with it. As you can imagine that was very hard, but I was able to have had some good years here and there where the dizziness has mainly been in the background and not very bothersome. Over the years I still kept researching though and finally after finding some information about this I knew this is what I had. In 2012 I finally went to see Dr Rauch at Mass Eye and Ear and he finally diagnosed me. He told me to do the diet and try supplements and to come back to him in 3 months. After that it seemed to calm down and we decided not to do meds. Well over the last month I was diagnosed with Type 2 diabetes and freaked out which has only increased the VM beast to higher levels. I actually have been experiencing spinning vertigo at night in certain positions and the rocking vertigo when trying to sleep is off the charts. I am barely able to sleep because of how awful I feel. I am having massive panic attacks and cannot calm down. My GP prescribed me Zoloft but I am afraid to take it because I had a very bad reaction to Celexa years ago which landed me in the ER. I felt like I was on fire and became tachycardic so since then I am so med phobic it is insane. I know the only way I’m going to get out of this hell is if I can suck it up and try to take the med. I need to make another appt with a neurologist, but I wish I could find someone closer since Dr Rauch is not close by. I just need some reassurance or support right now since I’ve pretty much resigned to sitting on my couch all day and I am becoming agoraphobic. I have actually been contemplating ending my life because I just can’t do this anymore.
Hi Jess. I know it can be rough but please don’t give up. 17 years is a long time and with the right meds you can get better. Take a look at the med poll.
You have a 17 year old daughter. I have a 16 year old son. I, too, have been at this a long time. We have a responsibility to those who love us to keep trying. You are worth it. You can manage this. You must, because others love and depend on you. Don’t let your fear of a medicine reaction be stronger than your desire to live. What’s the worst it can do? Kill you? Are you thinking of killing yourself because you are afraid you might die? Take the med.
come on Jess…17 years you survived…you have gone farther than most of us , you should be giving us words of encouragement.
I think your relapse is due to 2 reasons
- stress in knowing you have type-2 diabetes. Skip the 5 stages of grief and fast forward to accepting it
- There is hell of a lot of research showing how insulin resistance can cause migraine. I think type-2 diabetes adds fuel to the fire. You treat the diabetes and your migraines should subside.
Go and see Dr.Rauch it is worth it. There are very few people who understand this well enough and Dr.Rauch is a legend and he might not see patients for a lot longer(I am guessing he is close to retirement)
Lastly all of us here have thought about ending our life. It is part of the MAV diagnostic questionnaire Better times will come.
I am trying to get through it the best I can. I am just extremely depressed, anxious, and exhausted. I will try to take the Zoloft today and hopefully it doesn’t make me feel worse. I just feel like dying because I’ve been living with this for so long and now with diabetes on top of it I just don’t have the will power to be able to contend with both illnesses. I cry all day every day now and feel like a shell of myself. I’m sorry to sound so ridiculous, I’m just so damn sad.
I’ve come to terms with the diabetes for the most part. I am also getting my blood sugar under control. Diabetes and migraines run in my family. I am not a big person or one who eats junk so I was surprised by the diagnosis and scared. Because of that though it literally ramped up the VM to insane epic proportions and has left me feeling awful each day, especially when trying to lay down. The rocking and spinning sensations are keeping me awake. I get a few hours of rest then I am back to feeling rocking and sometimes the spinning sensation will wake me out of a dead sleep or I’ve even been experiencing dreams with vertigo which literally hasn’t happened to me in years. I know I don’t have BPPV as these sensations are the same thing I have experienced when this all first happened to me years ago. Anyways I apologize for sounding desperate. I just want to feel better and lately I can’t stop crying or dreading how I am going to feel all day. I may try to make an appt with a different neurologist closer to home who also works with Mass Eye and Ear and she handles dizziness. Someone told me about her on another board yesterday so I’m going to call her today.
Thank you I will check it out
Jess, so sorry you’ve suffered for so long!
As you may have read, I’m not satisfied we know what causes MAV.
Interesting you have a diagnosis of Diabetes, take a look at this short paper:
It’s an interesting study. I have had all this long before my diabetes diagnosis though and it only ramped up immensely with the stress I have been under. I am just at a loss on how to get back to a functional individual now when I feel this way. It’s almost like it was when it first started for me. It’s off the charts
The point is diabetes can be sub-clinical and lingering, developing for some time.
I’m personally convinced that MAV is caused by either injury or some yet to be determined homeostasis issue. Diabetes is but one element of the body’s overall balance going awry.
I agree with you. I guess I’m just so depressed I don’t know what to do anymore. I am sitting here sobbing trying to figure out how I can get back to some semblance of normalcy.
How are you getting on treating the diabetes? If it’s genetic that may be more tricky, but some cases are completely reversible.
It’s definitely genetic I only weigh 130 lbs and I’m not overweight at all. I tried taking the metformin but that caused me to feel dizzy lightheaded and anxious so i stopped and now the endocrinologist is putting me on Starlix. I have been able to control it better though with diet and my sugars have lowered significantly
Well that’s something Jess! And the equipment gets better all the time? My mum had it (in her case due to being overweight unfortunately) but it didn’t really affect her too much as the treatment was very good.
MAV though …
Ya this MAV shit is awful. People have enough to deal with in life without this nonsense. I was given Zoloft to try to get the anxiety down but of course now I am med phobic so I’m having a hard time taking the initial dose
Jess the meds can really help. And as @GetBetter says, anxiety and diabetes probably not helping at all. You must must must try all avenues to see if you can optimise treatment. The drugs really can dramatically improve overall quality of life but you have to take the plunge.
I know…I feel like I am being ridiculous and I’m trying not to be. I’m just at such a low point right now and feel like there is no hope
We’ve all been there, and there is … you need to find the fight again! You can do it, Jess!
Basically, onwards and upwards is the only option when you have people around you who love you and need you to be there for them.
I had suicidal thoughts at one point, but got so much better with medication I started seeing the light and at the same time realised I couldn’t give up … it simply wasn’t an option.
Thank you so much! What medication worked for you?
Amitriptyline turned things around for me (@20mg nocte) … its not a silver bullet but made life worth living again.
There are of course many other options. Thankfully this was only the second one I tried.