Question about walking?

Hi everyone!

I hope everyone is doing well and I hope so much that we will all be free of this someday.

I haven’t been on in a few days because looking at the computer screen makes me dizzy, but I have a question about symptoms while walking. I started the migraine diet a couple of weeks ago and I have noticed a slight improvment. I am no longer rocking wildly while walking, but I am now wobbling somewhat. But, also my walking feels like I’m walking around on a sponge at all times. And I’m having a terrible time walking around on carpet and uneven surfaces. Last night was my husband and I’s 6th wedding anniversary. I decied to try going out at night, which I haven’t done since this all happened. We decided to visit the hotel were we got married and it was horrible! I felt like I was in a dream like state the whole time and walking on the uneven surafces was awful. I felt every bump in the road and pavement and again felt like I was walking on a sponge. Will this get better as time goes on? I’m hoping to start medication very soon, so will these symptoms minimize or possibly go away? Thanks.

Hi,
It’s quite possible that some of your symptoms will lessen upon using a med. Keep in mind however, that it takes a while for a med to work, and you may have to keep trying meds until you find the one that helps. That’s what we all go through. My guess though is that if they put you on some sort of antidepressant too, you’ll find the symptoms lessening. I believe the body also tries to adjust itself, but this too takes time. Hang in there.

For me the feelings you describe while walking went away once I found the right medication. I still have problem like that but usually not as severe as they used to be, and much farther apart, as well as the days inbetween are much better now.

I know those sensation you describe all to well. For me, they are even worse, they will get to the point that my body has little to reference accurately for balance and I end up falling.

You did mention that your problems are even worse in the dark or at night. There is a very good explanation for this. The balance system is actually composed of three senses, your inner ears, vision, and muscle tension throughout the body. Already, your the info from your inner ears isn’t reliable so your brain is relying on the other two senses more. Then you throw darkness into it, and you just lost one more part of the balance system. This puts the remaining part of the balance system into overload mode, and you start to become sensitive to things like bumps in the floor, or uneven flooring. Also, because you are now dependent on just muscle tension now, your whole balance will suffer, and you will stagger, bounce off of the walls, and fall. I actually try to keep some type of night light on so that I can walk to the bathroom in the dark without taking out a dresser on my way there.

Brian

I know the walking feeling you are describing. It is irritating. I can say that the Verapamil actually did help with that sponge walking feeling. When I get that now, it is short lived almost in spurts not constant. Uneven ground still bothers me somewhat though but not as bad. I think that will eventually just lessen and disappear with medication and time. I have been on the med for 2 1/2 months and I am probably not taking a high enough dose. If I did it might actually work better. I just have to watch my low blood pressure with this med. I do believe that part of MAV fades with meds and time. I had the sponge walking feeling mostly during the first couple of months of MAV.

Nance

Thanks everyone!

Nance, so you had the spongey walking feeling constant for two months straight? and then did it ease up some after that? That gives me hope and maybe I’ll start going into spurts of this.

Dizzyinaz -

I can honestly say the “spongewalking” really only lasted daily for about two months for me. My symptoms at the very beginning of this have pretty much left me. Thank God!!! I started out with “spongewalking”, fullheaded/heavy headed feeling, pressure in ears, extreme motion sensitivity, general imbalance and dizziness 24/7, anxiety, rocking feeling, jittery and vertigo episodes (brief). Now my symptoms are: "elevator/vertigo feeling (as if the floor comes up or moves under my feet), it is not constant though. On the average, it happens a few times a day. Alittle of the fullhead feeling (I think its weather related), general “off” feeling or dizziness. My symptoms are greatly less than it was even two months ago. I just complain a lot because I don’t want to have any symptoms, and when I have a flareup, I get so frustrated. I am afraid of going backwards, I have come too far. Overall, I have had some 90-95% days, most are 80-85%. At the beginning my days were usually spent laying down. Even a few months ago I was laying down a lot. Now I am not. In my opinion, I think time is the best medicine. Oh - Dr. Hain’s office called me back this morning. I have to decrease the Verapamil alittle. The nurse said sometimes people don’t notice a big difference until 6-7 months on a med!! I had asked him if I will continue to feel better or is this the best I can expect on the Verapamil. Also, my physical therapist said I don’t have to see her anymore. Since your symptoms are so similar to mine, I believe you are going to start seeing some symptoms diminish. I really do think that. Isn’t it weird how we kind of just got this disorder out of the blue? One good think, usually by now I will start with cluster migraines (every March or end of Feb.). So far so good, I think the Verapamil is preventing them. I think by summer you will be having 85-95% days. I really do.

Nance

Thank Nance,

Thank you for making me feel so much better. This forum is a godsend, it truly is! :slight_smile: I’m trying not to cry everyday but its so hard. It’s good to hear that the spongey feeling left you after a couple of months, so hopefully maybe in a few weeks this feeling will go away. I hate it so much! How long did the extreme motion sensitivity last for you? That has eased up some but I still have it 24/7, its just not as extreme.

I hope so much that I’m at least 80% of myself by the summer! That would be absolutely wonderful! I hope so much that this will happen for me!

Dizzyinaz -

The extreme motion sensitivity has let up a lot. I get it in spurts now. I have always been one to get car sick, video games bother me, I absolutely cannot go on carnival rides. But with the MAV, just watching kids run back and forth can get that dizzy feeling triggered. I would say it is about 75-80% better than it was. I still get a “whoosh” feeling here and there but nothing compared to what it was. For me, it generally lessened over time. I guess I should give the Verapamil some credit too. That motion sensitivity didn’t go away as much as the “spongewalking” but it is tolerable now. It is irritating at times, but tolerable. You would be so proud of me - yesterday, i took the kids, just me and the kids to an icecream shop that just opened in the next town! I also took them for a ride, just me and the kids!!! I also went to pick my daughter up at school and stood and talked to a friend! I had a twinge of dizziness here and there but before I would have to almost “rock” or sway to soothe my dizziness if that makes sense while standing. My family has noticed a big positive difference. Just around my period and right after, my symptoms hit harder. Damn hormones! But even so, my period this month wasn’t as dizzy of one as the previous ones. I know how it is to cry everyday. I broke down daily as soon as my husband would walk in the door after work. I still have my moments but emotionally overall i am better. I still have my days emotionally as you can see from my desperate posts. I am overall better and you will be too. You seem to fit into my pattern. I guess mav is a gradual process towards recovery. I know stress is a huge trigger for me. I am trying to be a more laid back individual. If that is at all possible!

nance

Nance,
That’s wonderful that you were able to do all of that! I am really proud of you! :slight_smile: I feel so bad when my little boy wants me to play with him and right now I can’t because it makes me dizzy. I can’t wait until I’m having much better days!

Dizzyinaz -

I really know where you are coming from. I used to feel terrible because I couldn’t play and do the fun things I used to with my daughters. Please believe me when I say that you will be yourself again. I really believe this teaches us not to sweat the small stuff in life. I look at things differently now. I wish I didn’t have to go through all this to be more appreciative of the little things in life. I have had a decent two days. I had a few friends over for dinner last night and my daughter has had her friends over all day two days in a row. I was able to drive my daughter and her friends places and everything. I hope this lasts. I honestly think time heals this somewhat. I had a few spells here and there but I just relaxed and didn’t panic. I used to panic pretty much. They were very mild spells more like motion dizziness. A few months ago, I would not have been able to do any of this. I know by this early summer, you will be out playing with your little boy and enjoying the things you used to with a new appreciation. You can do it, you can and will get better. Hopefully, no not hopefully, I know someday we will look back at this experience and we will be able to say that we are stronger because of it.

I have a question for you - My eight year old gets headaches. I notice she gets them if she is carsick on long car trips, or if she is overly tired or hungry. Lately, they have been somewhat worse. I believe that they are migraine like in nature. I read and researched about childhood migraines. She really doesn’t get enough of them to take a preventative. Motrin always does the trick along with sleep. Do you think she will suffer from MAV too? I pray to God that it won’t happen to her. I never had migraines as a child, I started with them at the age of fifteen. I know she gets nauseated with them. We have had major weather changes, I believe that is a trigger for her too. I am just worried for her. I don’t want her to go through this. She said one day she suffered from a terrible headache at school and the room moved around her. Vertigo?

I mentioned to the pediatrician about these headaches a while back, he didn’t seem concerned. She doesn’t miss school because of them or anything. I have read this can be hereditary. It is my fault, my husband doesn’t get migraines.

Nance

Nance,
I know that migraines are hereditary. My mom, aunts, grandmother and sister all suffer from migraines. None have had the vertigo component though. I don’t remember havin headaches as a kid, so they must not have been too bad. My neice, who is 7 also gets headaches from time to time…nothing that Motrin doesn’t take care of too. Have you had your daughter’s eyes checked? Sometimes eyestrain can cause headaches in kids. I feel the same as you though…I don’t want my daughter to have to go through this. :slight_smile:

Nance,
I’m so sorry you’re daughter is getting headaches and vertigo. I bet chances are though that she won’t go through what we have gone through. I have also been thinking about that a lot the past few weeks, wondering if my little boy will inherit this from me. I hope for dear life that he doesn’t. I’m going to tell him as he gets older to watch his diet because I honestly feel that played a role in why I developed this. I ate so unhealthy all the time. I was eating pizza constantly and I never took vitamins. The only time I ate healthy and took vitamins was during pregnancy. I’m also going to talk with about letting me know if he experiences any warning signs of this disease because looking back over the past couple years I did notice a few times where things weren’t quite right. I did experience flashing lights in front of my eyes and spinning vertigo when I was pregnant a couple of times. It only lasted a few minutes, I was scared, but I never did anything about it. Back in November I went to Europe with my sisters and my Mom and we stepped onto the beach and for a few seconds I experienced horrible imbalance on the sand. It scared me but after a few seconds it was gone and my balance was normal again. I also noticed one time in the last year where I closed my eyes and noticed i was slightly swaying back and forth while standing. If I would of gone to the doctor about this maybe I would of never had my horrible MAV crash last month and I would still have my balance.
But, I know I can’t change the past, so I am hoping so much that I will get better. Since migraines run in my family, I have warned my sisters though about this awful disease. I told them to go out in the sun more, watch their diet, exercise, live healthy, and take their vitamins! If I could stop one other person from suffering like what we have suffered and/or still suffering through, then it makes me feel better. Once I’m feeling close to my old self, I’m still planning on visiting this site all the time to help new people who are inflicted.

Dizzyinaz -

It is so weird, you and I are so much alike. Before all this, I didn’t really eat healthy at all. I would skip meals and eat whatever I wanted. I never took vitamins either before all this. Just like you, if I look back, I did have symptoms of this coming on, I just ignored them. I didn’t give the warning signs much thought at all. When I’d have a vertigo spell, it would only freak me out for a second or so. I’d always think it was my blood sugar dropping and I’d eat something. I too, will always visit this site. Everyone is so nice and helpful. All these people have helped me more than anything else. You guys are all such wonderful, supportive people. I actually made it to church today with my daughters and husband. I never even really went to church before all this, only once in awhile. I lit a candle and prayed for everyone on this forum. Just think - -everyday you are one day closer to being better.

Colleen -

Thanks for the advice. I did have my daughters eyes checked. That was the first thing that came to my mind also, but it has been almost a year. I wonder if I should get them checked again? I told her to tell me right away when the headache starts to get some Motrin. Sometimes I think she waits too long to tell me and it takes longer for the Motrin to work. I know when I was suffering form migraines, I would try to take something right away if possible. I sure don’t want our kids to go through what we are.

You are all in my thoughts & prayers -

Nance

Nance -

You asked about your daughter. I think there is no way to predict. I was very motion sick as a child (actually my whole life) and I had headaches that were weather related. My mom and dad both have headaches and occasional dizziness (although neither will claim migraines) and my brother has migraines. My daughters are showing signs of having motion sickness and it breaks my heart. I try not to look down the road too far for them. But what I do hope is that for them if they get it is that there will be a cure, and whatever I find to cure myself, will help me help them if they do get this terrible thing.

Here’s hoping we all are part of solving this illness. I pray all the time now for those of us that suffer from this and well as all of those who suffer from chronic illness. It’s a life I really didn’t understand before. Boy did I take health for granted.

Best,

Molly

Molly -

I never thought of it that way, I am going to stop worrying so much about my daughter getting mav down the road, because by then i am sure there will be a cure. I guess it doesn’t do any good to worry about what hasn’t happened yet, right? So, a lot of your family suffers from headaches? What is strange is, the only one that ever had migraines in my family is my uncle. You said your parents get dizzy? It isn’t mav though?

Nance