Hi everyone,
I’ve now been on verapamil for about 2.5 months and although I have noticed some positive changes in some of my symptoms (slight decrease in head heaviness, able to do a bit more, a little less time spent in bed, less rocking laying in bed), the rocking upright continues to be intense. Any time I stand up and am still, it is just horrible. I was wondering if others have experienced this symptom to this degree or have found any med to help with this symptom. Any and all thoughts are greatly appreciated.
THANK YOU!
Lisa
Hi Lisa,
I have problems with the rocking too, but mostly when I’m in bed. I feel like I’m floating on water and I hate it. The Celexa has helped a tiny bit with that, but not so much…I’m sorry you are feeling bad.
Emma
Lisa: I also have had this rocking when standing still. I feel like I am drunk and cannot stand still for any period of time. I makes me quite anxious especially when someone comes up to me, stands in front of me for a conversation. I am soooo afraid I am going to fall right into them. And I am sure the anxiety of the whole thing makes it worse. I feel better when moving. I am not any any meds. Just migraine diet, arobic exercise and yoga a couple of times a week. I do feel better and the motion is tolerable. I do sometimes have this rocking scensation while watching television.
I hope this helps and your rocking settles down some.
Joan
Emma and Joan,
Thank you for the responses. Sorry you both are suffering with this sensation, but I feel a little better knowing I am not alone.
Emma— I hope the additional increase in Celexa settles this down. Hopefully since you responded a bit to the lower dose, the increase will continue moving you in the right direction. Keep us posted!
Joan-- Have you tried any meds to help settle the rocking? What did the docs at MEEI say about this symptom and how to settle it down? I find it just impossible to live with and it is the major symptom keeping me from living life.
As always, thanks so much!!!
Lisa
Lisa: My Dr. at MEEI tells me that this symptom is “classic” MAV (if there is anything classic about this). His treatment usually starts with nortriptyline, low dose. He gave me the option of trying it. I got some results with the migraine diet and lifestyle changes such as arobic exercise and yoga so I didn’t want to try any meds, he told me to call it I changed my mind and he would call in a script. I asked me if I was having a particularly bad day if there was anything over the counter that I could take and he suggested I try Bonine (meclezine) or Dramamine (not sure of its active ingredient but it is different than Bonine). I actually carry Bonine in my purse at all times but have not taken it, I think just knowing I have it if this gets out of control, makes me feel less anxious.
Another “trick” I use, I notice that this rocking feeling happens usually when I am trying to stand still usually having a conversation with someone but I notice my eyes seem to “dart” around and not hold a steady gaze. Which makes sense since MAV is a disturbance in sense of movant and balance. When your eyes are darting you are giving your brain the false sense of rocking movant. At that point, I will suggest to whoever I am talking to that we take the conversation over to my desk. If I sit up straight in my chair so my back is making contact, the nerve endings in your back send the signal to your brain that you are actually sitting still and seems to be enough to override the false signal of movant. I hope that makes sense. I seems to work for me. I find there is alot of “self talk” involved here to keep yourself calm in this storm of confusing signals to your brain.
I also tell everyone I know about this “condition”, so they know what I am dealing with and sometimes need to modify what I am doing, such as sit down instead of standing, walking away from the computer at time, or just going for a walk (that really helps the rocking). It helps the disconnect in my brain … if my brain actually thinks I am moving, if I get up and move my brain seems to settle down some.
I hope some of these suggestions of coping skills help you get on with your life.
Joan
Hi Joan,
Thank you so much for your thoughtful response. It makes complete sense and I also find the things you mention helpful, although I am not as functional as you (not able to work). Is there a reason you don’t want to try a med to help with the rocking? It seems like you are doing a great job managing this symptom with your lifestyle changes. It seems like you are almost there and that is teriffic but as a fellow “rocker” I just find this so debilitating. If I am able, I do find walking “overrides” the rocking and is certainly more comfortable than standing, and if I do sit, I need a high backed chair to mobilize my head and that too helps with the rocking. I just feel so desperate as I can’t even stand to have a conversation with someone. I am really hoping the medication I am taking will lessen this sensation.
Best,
Lisa
— Begin quote from “Joanmac”
Lisa: My Dr. at MEEI tells me that this symptom is “classic” MAV (if there is anything classic about this). His treatment usually starts with nortriptyline, low dose. He gave me the option of trying it. I got some results with the migraine diet and lifestyle changes such as arobic exercise and yoga so I didn’t want to try any meds, he told me to call it I changed my mind and he would call in a script. I asked me if I was having a particularly bad day if there was anything over the counter that I could take and he suggested I try Bonine (meclezine) or Dramamine (not sure of its active ingredient but it is different than Bonine). I actually carry Bonine in my purse at all times but have not taken it, I think just knowing I have it if this gets out of control, makes me feel less anxious.
Another “trick” I use, I notice that this rocking feeling happens usually when I am trying to stand still usually having a conversation with someone but I notice my eyes seem to “dart” around and not hold a steady gaze. Which makes sense since MAV is a disturbance in sense of movant and balance. When your eyes are darting you are giving your brain the false sense of rocking movant. At that point, I will suggest to whoever I am talking to that we take the conversation over to my desk. If I sit up straight in my chair so my back is making contact, the nerve endings in your back send the signal to your brain that you are actually sitting still and seems to be enough to override the false signal of movant. I hope that makes sense. I seems to work for me. I find there is alot of “self talk” involved here to keep yourself calm in this storm of confusing signals to your brain.
I also tell everyone I know about this “condition”, so they know what I am dealing with and sometimes need to modify what I am doing, such as sit down instead of standing, walking away from the computer at time, or just going for a walk (that really helps the rocking). It helps the disconnect in my brain … if my brain actually thinks I am moving, if I get up and move my brain seems to settle down some.
I hope some of these suggestions of coping skills help you get on with your life.
Joan
— End quote
Lisa,
What Joan is saying makes so much sense to me although I am not able to work either and I am not on any meds. I have been unable to tolerate any that I have tried so far except for the very low dose of valium that I take every day.
When the rocking is bad (seems to be a little worse today) then walking is much better or I have to sit with my back up against a surface (sofa) that is hard and I put a pillow behind lower back and a neck pillow behind my head to stablie my head and neck.
I also sleep with the neck pillow at night and it seems to help.
Lisa if I may ask what is your typical day like at this point and time? I am curious as mine has changed so drastically over the last year and a half.
I know you said you are small and wonder are you able to eat…that is a real problem for me right now is getting enough calories…when I push the amount of food it seems to make everything worse. I really wonder what the correlation is with the food or maybe just the eating period.
I hope you are having a better day…hang in there!
Does anyone know how the doctors decide who has mAV and who has MdDS? I have reading more and more about Mal de Debarquement and it seems so similar with all the rocking. It also talks about spontaneous onset, getting when one has not been on a cruise or flight. Most of the doctors that I have seen have mentioned both MAV or MdDS but no one ever gives me a straight answer. I was walking on a hill when my rocking started, bam, one step I was fine the next, I was rocking. I do have a history of migraine and two dizzy spells in the night.
If we have MdDS, will the MAV meds ever work? I have never been able to get straight answers from Hain, Rauch or Lewis. Is walking up a hill a motion event that could cause MdDS or is it MAV? Has anyone else heard these things from doctors or do they just diagnose you with MAV?
Sally
Hi Timeless,
Yes, I eat a lot. No problems there. I have someone who does all the cooking and shopping for me (my mom) so that is never an issue. My days are spent basically in bed, doing some walking, trying to sit in a chair as this is tough as well because my neck feels like it can’t support my head after awhile, bed again… next day… repeat… I do VRT 3x/day as well.
Wish I had something better to report. I am trying to be hopeful that as I increase the verapamil I will see more improvement:-)
Feel better too,
Lisa
I have terrible rocking when walking, but it is much more subtle when sitting or lying down.
Lisa - I also hope that the verapamil works for you.
Hi Everyone,
— Begin quote from “Sally”
Does anyone know how the doctors decide who has mAV and who has MdDS? I have reading more and more about Mal de Debarquement and it seems so similar with all the rocking. It also talks about spontaneous onset, getting when one has not been on a cruise or flight. Most of the doctors that I have seen have mentioned both MAV or MdDS but no one ever gives me a straight answer. I was walking on a hill when my rocking started, bam, one step I was fine the next, I was rocking. I do have a history of migraine and two dizzy spells in the night.
— End quote
Sally I think the doctors are not sure on what the relationship is between the two conditions yet. However, I do know that people that have MAV are more susceptible in getting Mal de Debarquement. Before I developed MAV I had problems with MdDS. I remember anytime I got of a plane I felt I was still on it for a few days after, the same with boats.(I never liked boats…)
Joan, Dr. Hain told me that Bonine doesn’t work for migraine. It only works if you have a inner ear problem… Who is your doctor by the way?
Lisa, I feel bad that your life has been taken away from you…I hope the verpamil helps.
I can says that since I started Celexa I feel more confident leaving my house and I do more things, but everyday is different… I’m a personal trainer so I work a few hours a week to get out of the house. Are you a doctor? did you work before you got sick, or did you just get out of school?
Best,
Emma
This is actually my second “bout” with this in a 3 year period. My started 3 years about on my 49th birthday. I woke up turned on my right side and the room starting spinning, worse than any amusement park ride. I was diagnosed then with BPPV and was treated with an eply manuveur and sent to VRT. After the eply manuveur was performed the wild spinning stopped and I was just left with constant imbalance, rocking and tilting. I was sent to VRT and got better for a month or so, but after that I started to get worse. I went to VRT for about 6 months and they said they couldn’t do anything more for me. When I started to get worse I decided my ENT didn’t know what else to do for me and I was lucky enough to call MEEI which is about 20 minutes from my house and asked to be referred to a dizziness specialist and I was connected to Dr. Preisol’s office who is a oto-neurologist. After reviewing all my ENG testing and performing a few of his own as well as MRI he diagnosed me with MAV. Being 49 it was attributed to fluctuating estrogen levels due to menopause. Blood test from an endocrinologist confirmed that. My first bout lasted about 6 months or so. Then it came back again about February of this year. Although knowing what it was I was less anxious. At the beginning I found I could not work, I took all my sick/vacation/paid time off which was about 5 weeks. Then started back to work part time. After about 6 mos. I started to feel better but not great.
I did the VRT about 3 or 4 times a day, but started to feel better when I STOPPED the VRT and stared to move my whole body not just my head as in all the VRT exercises.
I also feel better after doing yoga. When the rocking starts I feel my neck, shoulders upper back are stressed, I try to hold my head, shoulders, neck still to stop the rocking. I mentioned this to Dr. Preisol, he equated it to a rubber band. When you pull that taut any movement will cause an eggagerated response but when you hold the rubber band losely it is better able to absorbed the motion. Think about it … it makes sense. Yoga helps me loosen up my neck, shoulder, upper back muscles. The dr. also suggested massage therapy for the same reason. Yoga isn’t always easy. At the beginning of the hour I sometimes cannot even sit up straight, but by the end it is such a differnce.
I hope some of this helps.
Joan
This sounds silly, but I am not sure if I understand what the “rocking” is. The last time I walked without an assistive device was about 3 1/2 years ago. If I walked down a hall I had a very wide based gait and generally “bounced” from one side of the hall to the wall on the other side of the wall.
My gait right now is quite different. If I walk with a walker. I need a gait belt and 1 -2 people with me and a wheelchair close behind. I am VERY ataxic and fall quite easily. My total endurance is about 15 feet.
Is the “rocking” similar to what I experienced 3 1/2 years ago?
Claudia
Hi Emma,
Yes, to answer your question, I am a doctor who was a very busy professional working and living in New York City (I’m 35 yo). When this happened, I had to take a leave of absence from my work and eventually give up my apartment as I have been sick for 2 years now and move back with my parents (who live in the suburbs of New York City), because I could no longer take care of myself. In addition, I was a very active cyclist, runner, and weight lifter, usually training as much as 2 hours a day along with my busy schedule. I also used to be a personal trainer a long time ago before going to medical school:-) Life has stopped in it’s tracks…
I hope you and everyone else get their lives back to almost normal.
Best,
Lisa
Emma:
My dr. is Dr. Preisol at Mass Eye and Ear Infirmary in Boston. He told me if I don’t want to take something on a daily basis to try Bonine which is meclezine or Dramamine which is a different drug (not sure what it is) for the same symptoms if I am having a particularly bad day. He said someones it is enough to “take the edge off” but different people react to the different med … so to try both. It will not prevent any of these symptoms but may make a particularly bad day tolerable. I have never taken it but I know some people take it on a daily basis, at bedtime because it has a sedating effect, and it helps them through the day.
Lisa
Has he talked about adding another med to the mix to see if that will help you with some of these symptoms?
— Begin quote from “Timeless”
Lisa
Has he talked about adding another med to the mix to see if that will help you with some of these symptoms?
— End quote
Hi Timeless,
Not at this point as I am still on a very low dose of verapamil and my doc wants to maximize this drug first before we add something else. I am on 80 mg now and will be increasing by 20 mg every 3-4 weeks. If the verapamil doesn’t do the trick when I reach a more therapeutic level, I believe my doc will add zoloft to the mix.
Lisa
Lisa - I don’t know if you would know this, but does Dr. Newman ever give Zoloft alone or always in combo with Verapamil?