New med plan

Hi all,
It’s been a while, however, I thought I’d give an update. I am currently on 100 mg of Amitriptyline, 50 mg of Topamax, and 180 mg of Verapamil. My dizzy symptoms are better then they have been in a long time, but I am still dizzy every day. The amitriptyline is doing most of the heavy lifting for me. I went back to see Dr. Cherchi/Hain this past week. He feels strongly that I should consider coming off of the amitriptyline and trying Effexor since they work in similar ways. He believes I may see better results with the Effexor.

Since I teach and the school year is almost over summer would be the best time for me to make this switch. Saying I am terrified is an understatement, but the prospect of getting better is hopeful.

It will take me two weeks to taper off the ami. 3 weeks to introduces Effexor and then 4-6 weeks to to see if I notice a difference. Then, I will either increase the Effexor, or go back on the Ami. Even if I notice a benefit from the Effexor, it could take quite a while to find the right dose. At that point, school is starting again which is scary. I’d hate to start the school way feeling bad AGAIN!

I guess this is the best time for me to try, but it is REALLY anxiety provoking!

Sarah

Sarah, I can appreciate your concern. How have your symptoms impacted your teaching in the past?

Sarah - it is good to hear from you. finishing up a school year feeling ill is a major accomplishment! I am glad to hear that you were doing somewhat better,and I hope that Effexor takes you all the way. Please keep us posted on that.
Lisa

David,
I have only had this illness for just over a year. It came on last May. When I started the school year I was not in a great place. I was considering taking a leave of absence, however, that would mean no insurance. Fortunately enough the meds I’m on now make working tolerable. I’m so scared to rock the boat!

Lisa,
How are things going for you?! Have you started trialing any meds now that the baby is here? How is your little bundle of joy?

Sarah - I’m on 40mg of nort and have to gradually increase dose. I’ve made some improvements, but still very ill, and hoping for more progress as I raise the dose.
What sxs for you have left or decreased? what sxs are you left with now?

Lisa,
I’m glad to hear you are having some improvement i hope it gets better as you increase the dose! You WILL get better, it is just a matter of time.
I would say all of my symptoms have improved. For the most of the day I can remain dizzy free if I avoid my triggers. I can’t go into ANY store, can’t be in restaurants, crowded places, can’t walk through the park. It seems to me that most of my triggers are either food related or come from visual stimulation. At school I can’t be in the hallway with kids. It is difficult if there is too much activity going on. I also can’t walk next to anyone ever. There are still a TON of things I can’t do, however, I am not dizzy ALL the time which is a huge relief.
Sarah

Sarah,

I can relate to everything you wrote. I am not doing as well as you, but I cannot handle any of those environments, and CAN never ever walk next to a person.

Please keep me posted on how Effexor goes.

Lisa

Hi Sarah,

I have seen both Dr. Cherchi and Dr. Hain since my diagnosis Oct of 09. As we all know - getting the right mix of meds is sometimes a shot in the dark. I am still trying to figure mine out. Prior to my diagnosis, I suffered from dizziness for years without really knowing what I had. I knew that visual stimulation seemed to bother me - sometimes the simplest of things can help. Perhaps wearing sunglasses indoors while you are teaching or even a baseball cap. I worked in a high school for 10 years, and the flourescent lights can be quite disturbing. Try wearing the glasses in a walmart or Target - those stores seem to give me the most trouble. If you get some relief in that enviornment - it should work in the school - I hope that helps.

Mark

Thanks for the suggestion Mark. In school I turn only 1/2 my lights on and I have HUGE windows which helps tremendously. I do ware my shades from time to time to help with the lighting. My visual problems seem to be from what Dr. Cherchi desribed as “optic flow”. The glasses don’t help much in stores because there is too much movement and too much STUFF!
Hopefully a new med. will help. two days till I make the change!
Sarah