Setbacks

Hi.
Does MAV ever get to a point where you just don’t have to worry about it? I was feeling pretty good, feeling positive, and then this weekend came with unexpected events. My oldest daughter came down with a virus - high fever, cold symptoms and of course now my youngest has it too. I haven’t slept well in two nights. My youngest had such a high fever last night, throwing up and she started hallucinating because of the high fever. I called our local ER. I got the fever down and was able to catch some sleep from 5 am to about 9 am. I had to go out today and get some groceries and medicine for the girls, my husband stayed home to watch them. In the stores I felt as if the ground was not flat. It felt like it was rolling underneath my feet. I don’t know how I managed to get to the car. To top it off, right before my youngest caught this flu virus, she got bit in the nose by a family member’s dog. It looks much worse than it is, but it was so scarey. She was so scared, me too. Okay, so I have had a stressful weekend, little sleep, strayed from my diet. In the old days, I didn’t have to worry what would happen if I was tired or hungry or ate fast food. We can’t avoid stress, it is impossible. I never had to worry about getting vertigo or dizzy in stores. I feel sooo frustrated right now. I want to be rid of this once and for all! I have read so much about this and all the posts, I understand it gets better with meds, sleep, diet, etc. but…headaches don’t last forever. Chronic headaches aren’t continuous 24/7. This can’t be, right? I am sorry to be a downer today. I have just had it with MAV!!! :x I don’t understand it.

Frustrated and fed up -

Nance

Hi Nance,

I’m only a few weeks into this horrible thing and am wondering every second if this will ever go away completely or will I be stuck with this for the rest of my life. I’ve cried probably five times today because I can’t stand the feeling of walking around and feeling like the floor is moving and swaying at every step I take. Do people ever just wake up and have this all be gone? Do they ever recover and not have one ill effect from it ever again? Right now, sitting here at the computer I feel like I’m moving to the right and then to the left.
This disorder is horrible and I wouldn’t wish this on anyone. I’ve had a bad day and I know how you feel Nance. I’m here if you want to talk.

Are either of you on any preventative methods?? I am where you are also right now, really hoping that controlling the headaches with control the MAV. Is that possible???

Hi Andrea,

No I haven’t started any meds yet. I just had my MRI today and I see the neurologist next week so I’m hoping to start the meds very soon. How long have you had this disorder? I just began having this a few weeks ago and its terrible. I’m so afraid I’m going to get worse.

Nance, I hope your kids are feeling better!

— Begin quote from "dizzyinaz"

Right now, sitting here at the computer I feel like I’m moving to the right and then to the left.

— End quote

I know that feeling all to well. :mrgreen:

Regarding the topic of this thread, does it ever get to a point that you don’t have to worry about it? The answer is still out from my perspective. I have periods during the summer where I feel 100% normal and forget all about what it feels like to have the floor moving under your feet. Then I have other periods usually during the winter where I am struggling to get from one day to the next. One thing that is very important though is that I do have good days now, and I have a lot fewer bad days.

I have had to make a lot of life style changes so that this is managable. So that I can do things like go to the store or work. I kind of lead a boring life these days, but at least I don’t have the room rocking on me most days. I know that kids makes things hard to keep the stress down, especially with 9 of them. I usually take an anti-anxiety med before doing activities with lots of other people with my kids to keep things from moving around. These events are usually followed by a nap when I get home. Everyone in my house has learned that if we are going to do things then dad needs to rest up either before or after, or sometimes both.

9 kids, wow, I work with just two. Do you have them doing anything around the house to help you out? Just regular chores or something to take the load off of you, and let you have some down time.

Brian

Dizzyinaz -

My kids are doing better,thank you for asking. Both of them are on an antibiotic. My eight year old is left with a cough and my three year old’s fever is gone today. Thank God! My eight year old was upset because last week was the first time she missed any school this year. It’s that time of year here in Illinois, major weather changes which seems to bring sinus, colds, and flu. I emailed Dr. Hain today with some questions. He said to email him if I ever had any questions and I sure do. I’ll let you know what he says. This is such a stressful thing to go through, isn’t it? I miss my old life and I am bound determined to get it back somehow. I took so much for granted before, even just going for walks. I pray so hard every night for all of us on this forum. How are you feeling today? I remember getting my MRI, I was so nervous. It wasn’t as bad as I had anticipated it to be though. I bet you will be so glad to get on a medication. The Verapamil has helped me tremendously, but I am not where I want to be. I read that usually people only need to be on medication for a year or too, than symptoms subside and one can control the triggers on their own then. I wonder if that means the symptoms go away altogether? An ENT had written that on a website.

9kidsus -
I take Verapamil. I have been on it for 2 months. It has helped me have better days. It has greatly helped the rocking feeling and the marshmallow walking and the heavy, pressure feeling in my head. I struggle with occasional dips or it is like the ground is not flat. It comes up to meet me under my feet, a rolling feeling. It is not constant. It is kind of an elevator feeling. I still get dizzy sensation with quick turns sometimes. I hate going to stores because of it. I force myself lately. Sometimes, I am okay though. I think the aisles and lighting kills me or is it anxiety? I can’t blame it all on anxiety though. I never experienced that feeling with anxiety before. I don’t know. You have a beautiful family. I saw the picture. You are so blessed. How do you cope with MAV and a large family to take care of? This isn’t fair that you have MAV or any of us. We have to find the answer. I looked up Dr. Andrew Jones. I think I may order his book too. I am hoping my endocronologist will be able to make a hormone connection and help me in addition to the Verapamil. I will pass on any info. I get.

Brian -
That is so cool that you get days where you forget about the MAV. I love hearing that!!! I cherish my 90-95% days. I feel like I am the luckiest person alive when I get those days. So, you have more of those in the summer, huh? Maybe I will too. I definitely lay around a lot more now. I have never been home as much as I have been for the past 10 months.

Nance

— Begin quote from "nance"

Hi.
Does MAV ever get to a point where you just don’t have to worry about it? I was feeling pretty good, feeling positive, and then this weekend came with unexpected events. My oldest daughter came down with a virus - high fever, cold symptoms and of course now my youngest has it too. I haven’t slept well in two nights. My youngest had such a high fever last night, throwing up and she started hallucinating because of the high fever. I called our local ER. I got the fever down and was able to catch some sleep from 5 am to about 9 am. I had to go out today and get some groceries and medicine for the girls, my husband stayed home to watch them. In the stores I felt as if the ground was not flat. It felt like it was rolling underneath my feet. I don’t know how I managed to get to the car. To top it off, right before my youngest caught this flu virus, she got bit in the nose by a family member’s dog. It looks much worse than it is, but it was so scarey. She was so scared, me too. Okay, so I have had a stressful weekend, little sleep, strayed from my diet. In the old days, I didn’t have to worry what would happen if I was tired or hungry or ate fast food. We can’t avoid stress, it is impossible. I never had to worry about getting vertigo or dizzy in stores. I feel sooo frustrated right now. I want to be rid of this once and for all! I have read so much about this and all the posts, I understand it gets better with meds, sleep, diet, etc. but…headaches don’t last forever. Chronic headaches aren’t continuous 24/7. This can’t be, right? I am sorry to be a downer today. I have just had it with MAV!!! :x I don’t understand it.

Frustrated and fed up - Nance

— End quote

I an not sure what to tell you to do when the stress level is unavoidable, thank goodness my kids are grown and I did not have that in the equation.

Can not stray from the diet regardless has been my experience even if you are feeling better.

Perhaps you need a break and someone could help you out a bit, family (parents) and if there is a need to go to the store when you like this someone else should do that instead of putting undue pressure on yourself in addtion to the fact your symptoms were already elevated. Thank goodness I have my husband to do those things for me when I cannot or I am not sure what I would do…

Thoughts are with you , hope you are having a better day.

I just walked around the corner in my laundry room, and the walls moved horizontally right to left, left to right. I immediately got nauseated and had to lay down. I was sooo dizzy. I am having my mom pick up my daughter at school, I don’t want to drive. Why did that happen? I haven’t had a spell like that since Nov., before meds. Is that vertigo or dizziness? I am having such a set back. Why??? How long will it take to get back on track. I had a piece of cheese on a homemade hamburger for lunch. Can one piece of cheese do this? It was just american cheese. Maybe I am not being strict enough on my diet. I got so scared. I am home alone with my three year old. I just layed down and turned cartoons on for her to lay down with me. What do you guys do to calm down when that happens? I am afraid it will happen again. Maybe the Verapamil is dropping my pressure too low. I have come too far to go back to square one. I could just cry.

Nance

— Begin quote from "nance"

I just walked around the corner in my laundry room, and the walls moved horizontally right to left, left to right. I immediately got nauseated and had to lay down. I was sooo dizzy. I am having my mom pick up my daughter at school, I don’t want to drive. Why did that happen? I haven’t had a spell like that since Nov., before meds. Is that vertigo or dizziness? I am having such a set back. Why??? How long will it take to get back on track. I had a piece of cheese on a homemade hamburger for lunch. Can one piece of cheese do this? It was just american cheese. Maybe I am not being strict enough on my diet. I got so scared. I am home alone with my three year old. I just layed down and turned cartoons on for her to lay down with me. What do you guys do to calm down when that happens? I am afraid it will happen again. Maybe the Verapamil is dropping my pressure too low. I have come too far to go back to square one. I could just cry.

Nance

— End quote

Do you take your blood pressure I have a blood pressure machine and take it if I start feeling Wierd to see i it is low or high.

American chesse is not supposed to be a problem but the only kind i can eat is cream chesse without problems.

Get you an ice pack and put on the back of your neck and see if that helps…as soon as I feel that “feeling” come on that is what I do and it seems to calm things down a bit. Plus I do keep ginger ale at close range if I start to feel nauseated or ginger tea.

Thank you, Timeless. Do you think it can get as bad as it was in the beginning for me? I am calmer than I was but I can feel the anxiety lurking inside me. A week or so ago I felt calm and positive. I really believed I was going to be okay. I am going to start monitoring my pressure. I need to get back to the diet stricter than ever! I am wearing myself out today fighting these symptoms. Are you still drinking the Calm magnesium drink?

Nance

— Begin quote from "nance"

Thank you, Timeless. Do you think it can get as bad as it was in the beginning for me? I am calmer than I was but I can feel the anxiety lurking inside me. A week or so ago I felt calm and positive. I really believed I was going to be okay. I am going to start monitoring my pressure. I need to get back to the diet stricter than ever! I am wearing myself out today fighting these symptoms. Are you still drinking the Calm magnesium drink?

Nance

— End quote

Nance I went through some ups and downs for the first couple of months when I started changing everything, some really good days and some bad days. But I have to tell you I have been very disciplined with my diet, sleep patterns, water drinking (3 to 4 bottles a day) plus other liquids, and I have taken my vitamins and supplements all along. Sometimes I drink the calm and sometimes I take the pills and sometimes I take the liquid. But I take it . Like I told you I take a half valium everyday. I also take an aspirin everyday 81mg.

I eat a low carb diet with vegetables, cream cheese, ceral, lots of chicken and some beef to get some fat into my diet. I also take flax seed oil. Use olive oil.

I keep my ice pack very near me at all times and when I get that “feeling” I put it on my neck right away. I also cannot take a hot shower cause it increases my symptoms so I take a cool shower. And i cannot be around any scents, chemicals, perfumes or strong odors., period. This is just something I have learned will set me off in a minute.

I am not sure what all this means other than I know I cannot do certain things and I have accepted that for now.

Hi Nance, Timeless, Brian

I started follwing the diet this past week and I haven’t noticed any difference. I still have terrible equilibrium and I am constantly feeling like everything is moving around me. It will get better right? I am having such a terrible day and all the days have been like this for the past several weeks. I haven’t noticed any improvment at all since this all started. Did you all start noticing it get better slowly after it started? Why can’t I have just have a few hours of dizziness everyday? Why does it have to be all day long?

Nance,

I’m so glad your kids are doing better! :slight_smile:

The MRI wasn’t that bad at all, surprisingly! I took some valium which calmed me down and they had me put a piece of cloth over my eyes so I wouldn’t see that I was an enclosed space. The whole time I was in there I could feel me swaying back and forth. I hate that feeling! I want to be normal again!!

Dizzyinaz -

I woke up this morning feeling so damn nervous about what today would bring. I cannot let myself go there again. I talked to my husband last night, and for once he made me feel better. He said he has noticed a huge improvement in me since I have been on the Verapamil. I guess I am just having a MAV flareup for whatever reason.

I think I maybe going in the wrong direction with my hormone theory. I started rereading the Heal Your Headache book and the author basically says not to mess with hormone replacement, etc. Basically, that fluctuations are normal and just treat the migraine to get rid of the symptoms. I am wondering if I should cancel my appointment with the endocronologist. I was hoping she could test my hormones and balance them out with medication thus getting rid of MAV altogether.

I guess I am just looking for an end to the MAV, a permanent end. I know what you mean about the constant disequillebrium. I have to say the Verapamil did help with that part. I have that now due to this flareup but not as bad as before the med.

I feel for you. I know where you are coming from. It is hard not doing the things we used to with our kids. We will be able to someday again. We have to believe that.

I wonder what med your doctor is going to start you on? Did you read the new posts regarding effexor and topamax?

Nance

Nance

Timeless,

You are so disciplined. I wish I was like you. I strayed from the diet and look where it got me. So, you had your ups and downs too in the first few months? I get discouraged so easily. It is so hard with all these new adjustments. Do you think I should quit the fish oil because of the gelatin? I am not sure if the calm is helping or not. Does it take awhile? As you read from my post before this one to Dizzyinaz, I am thinking about cancelling my appointmant with my endocronologist. Maybe I shouldn’t start messing with my hormones. What is your take on that? I just want everything to “balance” out.

On an average, are your days about 90-95% days? My cousin’s wedding reception is this Friday, I decided not to go. I was afraid of the crowds, music and lights. Why do that to myself? This is the kind of stuff that eats away at me. Normally, I would go and have a great time. I have to stop beating myself up. I seem to go into these “poor me” cycles. How stupid was I to take my life for granted before! I am definely learning a lot that is for sure. I am ready for this lesson to be over.

Nance

— Begin quote from "nance"

Timeless,

You are so disciplined. I wish I was like you. I strayed from the diet and look where it got me. So, you had your ups and downs too in the first few months? I get discouraged so easily. It is so hard with all these new adjustments. Do you think I should quit the fish oil because of the gelatin? I am not sure if the calm is helping or not. Does it take awhile? As you read from my post before this one to Dizzyinaz, I am thinking about cancelling my appointmant with my endocronologist. Maybe I shouldn’t start messing with my hormones. What is your take on that? I just want everything to “balance” out.

On an average, are your days about 90-95% days? My cousin’s wedding reception is this Friday, I decided not to go. I was afraid of the crowds, music and lights. Why do that to myself? This is the kind of stuff that eats away at me. Normally, I would go and have a great time. I have to stop beating myself up. I seem to go into these “poor me” cycles. How stupid was I to take my life for granted before! I am definely learning a lot that is for sure. I am ready for this lesson to be over.

Nance

— End quote

Yes I had ups and downs the first few months. I think you can get the fish oil in other forms other than the gelatin capsules, I was taking it and it dropped my blood pressure which was already low so I so not take that anymore. My husband and Dad both think the “calm” helps but I take the magnesium in several forms so I am not sure which one may be working. I would go to the endocronolgist because they may find something else to help. My hormones were checked and they were fine so I have no real advice on that…

I would say my days are 85 to 90 percent but I live a pretty boring life these days , LOL but that is okay. Speaking of events my aunt will be 90 next month and they are having a big party for her. I notified my cousin that I would not be there because I can not handle the crowds with scents, motion, etc. It may have made her upset but at this point that does not bother me anymore either as I told someone I have always been the type person who would never say"no" but after all of this it is just not worth it to me to risk turning the tables back to where I was six months ago. I will not risk it I have to take care of me for a change. Not to sound mean but I have been the one in the family who has done for everyone else and I just cannot do that anymore. I love my family more than anything in the world but I cannot let the stress build as it did in the past as I know the stress I was under with family circumstances is part of what contributed to this in the first place.

I live a pretty quite life these days and that is okay…maybe one day it will be different that is the milllon dollar question!

We can all hope and pray…and support each other for now.

Thanks everyone for your replies,

That gives me so much hope to hear that meds helped with the equilibrium. I can handle it if it happened a few times an hour, but it being constant is terrible. I want to start on Vepramil and I am hoping so much that it will help and I will get better soon.