This has been a symptom for me for some time and gets worse at times and then better at times. I haven’t been able to pinpoint a correlation to meds or no meds or any other trigger (doesn’t necessarily happen when I am more stressed). I find that my mind begins to race with various thoughts, almost dreams but I am mostly awake. I then get up and use the bathroom, which may take the edge off but doesn’t eliminate the anxious feelings. Does anyone else have this and has anyone found success in treating this symptom. I feel like if I could get this symptom under control it would go a long way to getting an overall handle on this disease. Thank you. Ben
Sorry to hear about your anxiety. I too wake with anxiety, but it is brought on by being woken by dizziness which then starts the anxious feelings of facing yet another day of battling this illness. I take a small dose of clonazepam because this often happens VERY early and I am able to get to sleep for about one more hour before the dizziness wakes me up again. Are you dizzy or have any other MAV symptoms when you feel this anxiety? Perhaps clonazepam before bed could help? I’m not sure if you are on any of the benzos, but they might even help with some of your MAV symptoms?
Thanks, Lisa. Yes, the dizzies are there too at the same time. I tried a short trial of clonazepam and it didnt seem to do much but it was only .5 a day for 7 days. I also have tried xanax and ativan but again not on a consistent basis. I am thinking I should try one of the three on a more consistent basis, maybe once at night and once in the am. Looking back, I think my 3 month trial with Verapamil actually did help me a little with the anxiety but did nothing for my dizziness…very frustrating! Ben
I definitely think from a anxiety standpoint one of the benzo’s taken in morning and night might work well. I’m actually an MD (I guess I should disclose that). My preference would be clonazepam as it is long acting and yes, you would need to take it consistently for it to be of greatest benefit. It is also the most benign as term as tapering off. I know you are on topamax and am keeping my fingers crossed for you, but the first line treatment for anxiety is an anti-depressant. Have you tried any of those and did they help with your MAV symptoms (or anxiety symptoms)? I’m actually doing really poorly on verapamil and will most likely be adding Zoloft to the mix so I can keep you posted as to if this helps me. Just so you know, I take .125 mg clonazepam 4x per day (total of 0.5 mg/day). I was put on this long before I received MAV diagnosis when my dizziness began as a vestibular suppressant. I have no history of anxiety or depression. I am staying on this for now even though I don’t think it helps much because with how bad I feel I don’t want to deal with tapering off of it just yet. My doc is in agreement with me staying on it.
Thanks again Lisa…I may starting calling you Doc Lisa! I think what you are saying makes a lot of sense. I am going to ask for the clonazepam for a longer term trial. I did try effexor for 2 months - I went slowly up to 75 mg. It didn’t help my dizziness and seemed to make my brain fog worse at times and I was grinding my teeth very badly and otherwise not sleeping very well. I also lost some weight. I then tried nortriptyline (10 mg) but only made it for 11 days due to extreme anxiety and it raising my blood pressure by a bunch. I continue to struggle with Topamax (dizziness/brain fog seems worse; flu like symptoms; odd visual issues) but it is still early and I want to push as best I can. I think zoloft is a very good idea. Howie’s story was one of the fist that I saw when I was doing my initial research last fall. My internist actually gave me a rx for zoloft and I took one 50 mg pill and suffered extreme nausea and never tried again…I wish I had known then what I know now about starting off slow…maybe zoloft would have been the one, or at least would have helped. I wanted to try either zoloft or cymbalta next but my Dr talked me into Topamax as the next try. I wish you the best with verapamil and (maybe) zoloft and thank you again for all of the thoughts. Ben
Actually if my anxiety is up upon waking I know I am going to have a bad day as the other symptoms seem to get worse at a quicker pace.
I take a small dose of Valium and I have tried taking it a little later and if it is bad in the morning I will take my dose in the morning which does help.
For what is it worth, I am taking Klonopin .5 a day (.25 in am, .25 in pm) and I have to say, I believe it does take the edge off. I believe this to be the case because before the MAV-related stuff kicked in for me, I was a slightly anxious person on a daily basis. When the MAV started, they put me on this to help with the vestibular stuff and I noticed a lot of people here saying how they had anxiety issues with MAV. I wondered why I did not. I think it is likely because I was put on the Klonopin and also don’t have quite the same MAV issues as them. I DO know that my regular minor pre-MAV anxiety seems to be greatly lessened.
PS> It took a number of weeks/month for me to notice the above, btw.