How does everyone cope, has anyone had these symptoms?

How does everyone handle these terrible symptoms? Thank you everyone for helping me, this condition is so debilitating.

I’m still feeling like I’m walking on a trampoline and the last two days I’m starting to have more visual vertigo (where it looks like the room is caving in, things are somewhat moving) and my walking is being affected. I’m now feeling like I’m walking on a boat in a major storm, and it’s getting harder for me to walk. I think I might need to use a cane soon. The ground dips all the time, and when ever I look around I feel like I have a huge magnet inside my head and it’s pulling me down. Has anyone had any of these symptoms? I’m going back to see my neurologist and be put on medication because I feel like I’m getting worse. Will valuim or any benzos help with any of these symptoms? It’s so hard to cope, I want to improve so badly so I can take care of my son by myself.

Hi,
Benzos do help to dampen down the nerves in the inner ear and give some relief.
They are strong medication and quite addictive, so be careful.
When I was migraining everyday before trying my newest preventative, I was told by my Dr I could use low dose valium for a couple of days a week as long as I gave myself 3 days break in between
A good preventative is the best way to go, benzos can cause other problems you don’t need.
Benzos will only relieve the symptoms, not stop the migraine in the long run.

jen

The valium has helped me although I was better when I started it, it has helped a lot with keeping those symptoms to a manageable level. Plus for me it takes the edge of all anxiety associated with this disease. I only take a small dose of 2.5 mg a day.

Hey dizzyinaz,

Really sorry to hear about feeling so bad at the moment. Have you tried any other meds since dropping Topamax? Sorry if I have lost track here. I think what tends to happen is that MAV can just get a little worse if left untreated. Perhaps the migraine cycle just keeps going on and on further sensitising everything. That was my experience in the months I was off of the SSRI. Things just seemed to advance and creep in over time – more food intolerance, IBS symptoms etc. But since being on Effexor (hardly a proper dose) I have at least stopped the IBS and have more tolerance for food. If you can find yourself the right med you’ll almost certainly see things improve dramatically. Have you been back to that heurologist you mentioned some time ago for a follow-up?

Hang in there … Scott

dizzyinaz - I have all of your symptoms. It is extremely debilitating. I hope to find a med that works, as I have been grappling with this for almost 2 years. I took Klonopin (benzo) for a short time and it did not help me, and withdrawal was tough. But, everyone is different. I think the right migraine preventive is the best bet for us. Just wanted to let you know that I understand what you’re saying 100%. I have a very tough time dealing with this. I went to my parents for dinner tonight with my husband, and I just started to cry nonstop at the table - kept on remembering how good life used to be. Just walking from the dining room table to the restroom is an effort. I keep on trying to tell myself that it will get better. We really need to remain hopeful, but it is extremely difficult. I wish you all the best

Hi dizzyinaz,

I have been dealing with this dizzy condition for nearly 17 years and as i’ve said before on this forum…the only medication that is given me some of my life back…so that i can atleast work a part-time job, go to a movie…get out of the house is a benzo called Xanex. I have never felt as though i was addicted…not to say that some folks might have an addicting personality. I can only speak for myself. I take one tab per day…sometimes two tabs if stress is high or the motion is intolerable and it helps. I also have Vestibular exercises i do which gives me a little help + Verapamil gives me some help too. When my condition first began i had similar symptoms as yourself.

Joe

Thanks everyone for your support. :slight_smile:

Jenny, have you find any meds to help you. How are you feeling now?

Timeless,
I know you have improved from doing the diet, did you have symptoms of walking on a trampoline in the beginning?

Scott,
I just realized that you live in Sydney. I love Sydney, I visted there almost two years ago. It’s wonderful city. I even got to venture off into the Blue Mountains and hike through the beautiful forest! Those were the good old days. I think about that all the time. How wonderful life really was before this happened. I just hope everyday I can find a miracle (a prescription drug to help) or quite possibly and miracously (just hoping) maybe all of this will go away on its own. Thanks for your support, Scott, it truly means a lot to me to have everyone here to help me thorugh this.

Lisa,
I am hoping everday that we will find some help. I’ve only had this two months and I can’t imagine what you have gone through. Are you better in the mornings when you first wake up? I love the mornings because for about a couple of minutes after I wake up I feel close to normal. The trampoline walk is there but barely. We will find some help, we just have to. It is so hard to cope and I am finding myself everday crying more and more. I tried going over to my Mom’s house last night and her house made me so dizzy. I feel like I’ve gotten worse since doing those VRT exercises.

Thanks Joseph,

I’m willing to try anything at this point. I am hoping so much I can find the right medicine to help me. Thanks for your help. :slight_smile:

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Timeless,
I know you have improved from doing the diet, did you have symptoms of walking on a trampoline in the beginning?

— End quote

I was hardly able to walk around at all to begin with i spent a lot of time in the bed. The wavs motion intolerance was awful.

That subsided after i started the diet after about two months but was always looming right under the radar, some days were better than others. Its was like i was on a swing set, constantly.

I still have some of that but not to the degree it was in the beginning, today has been an off day not sure why…the first time in a while.

Hi Dizzyinaz,
Yes I’m doing well on effexor.
for me it’s by far the best preventative I’ve tried.
I started on it in January.
Titrating really slowly.
I hope it dosnt poop out on me any time soon as other meds have before.
Happy jen :smiley:

Hey dizzinaz,

I love Sydney, I visted there almost two years ago. It’s wonderful city. I even got to venture off into the Blue Mountains and hike through the beautiful forest!

Wow! That’s great that you were here and saw the mountains. Do you know what? I’m actually heading up to Katoomba this weekend and hoping to do a walk to a rock formation out there called the “ruined castle”. But as I sit here now I’m a little bit worried about the fallout from a 4 hour walk through the bush that will be moderately tough-going. Excessive exercise that I’m not used to really trashes me. Also hoping the drive up there doesn’t wreck me as well. It’s only about 100 km (65 miles) but not liking the idea of highway driving at the moment. Did you go to other parts of Australia?

Don’t worry, you’ll get back to a place again where you’ll be able to travel – maybe back to Oz! :smiley:

I feel like I’ve gotten worse since doing those VRT exercises.

I think you should reconsider the VRT for the moment. Rauch says that if VRT exacerbates your symptoms and makes no improvements over time (it sounds like you’ve given it a good go), then it’s pointless until you first control the migraine. I’m going to pin in a quote he said last year about this:

— Begin quote from ____

Even if migraine is not the primary cause of some of our patients symptoms, it causes intensification of symptoms to the point that the migraine inhibits treatment of the primary problem. Migrainuers are the only patients who get worse in vestibular rehab PT. I consider this diagnostic of migraine: If I see a patient who tried VPT but quit after 1 or 2 sessions I know they’re a migraineur. The migraine trumps every other dizzy diagnosis. Until I control the migraine, I really cannot treat the uncompensated vestibular neuritis, intractable BPPV, or Meniere’s syndrome.

— End quote

Scott 8)

Hi dizzyinaz,

I’m sorry you are feeling so poorly. I PROMISE YOU WILL GET BETTER! I don’t know when, how, or by how much, but you will get better. It won’t stay this bad if you keep working at finding a treatment plan that will work for you. I agree with Scott, maybe you should stop the VRT for now. I think you are too sick for that. You may be stoking the fire.

I was very sick like you with many of the same symptoms for the first several months, and I still have days like that. Fortunately, most of my days are now in the 70-90% of normal range vs. the 30-40% I lived in a year ago. I can’t give a particular medication the credit for getting me to this point. I have tried and continue to try medications and supplements in an attempt to get myself consistently in the 90-100% range, but I got where I am today through diet, lifestyle changes, attitude, and natural progression of the disease.

Don’t give up! Your body will adjust some, you will make changes that help, and eventually you will find a medication that gets you back to your life. As difficult as it is, I believe it is very important to do your very best not to allow yourself to stress too much about this because it only makes it worse. I know that is easier said than done, but try to find ways to calm yourself and take care of yourself.

We’re all here for you.

Marci

Dizzyinaz - I, too, feel much less dizzy for about 5-15 minutes when I first wake up. I feel foggy and awful, but not as dizzy. It takes about 30 min or so to truly kick in and then after my shower I am awful! It sounds like we have very similar symptoms.

dizzyinaz and MAVLisa,

Have either of you ever tried Meclizine for your dizziness/vertigo? It doesn’t work for everyone, but it helped me cope with the worst of my vertigo and nausea at the beginning of this mess. It made me EXTREMELY tired at first (I would have to take a 3 hour nap after taking it), but I eventually got used to it. Now I can take one and only get a little fatigued. It is basically prescription strength Dramamine. It takes away my nausea and seems to settle my vertigo episodes somewhat.

Just a suggestion.

Marci

— Begin quote from "MAVLisa"

Dizzyinaz - I, too, feel much less dizzy for about 5-15 minutes when I first wake up. I feel foggy and awful, but not as dizzy. It takes about 30 min or so to truly kick in and then after my shower I am awful! It sounds like we have very similar symptoms.

— End quote

I know this is going to sound weird but something just clicked when you said something about the shower. I found that the showers always made me feel worse when this all started especially the warm or hot water. So I started taking a cooler shower and actually (I know this is going to sound weird) do not take one everyday but do make sure and keep my hygiene in order with sponge baths , etc. When I wash my hair now over the tub or with a hand held sprayer from the shower I use cool or cold water.

For me that has made a big difference and I am not sure why but it does but it works. Even the few times I go to the salon I asked them to use cool water and I take my own shampoo which is fragrance and chemical free.

Just thought I would mention this …maybe no correlation. But it is worth a try. :smiley:

Thanks Marci. I’ll have to give meclizine a try. I want to get better so badly and I’m willing to try anything. Thank you so much for your advice. :slight_smile:

— Begin quote from "dizzyinaz"

Thanks Marci. I’ll have to give meclizine a try. I want to get better so badly and I’m willing to try anything. Thank you so much for your advice. :slight_smile:

— End quote

I tried it initially and it did help a very small bit but not a lot, but we are all different so it may work well for you. The valium has worked much better for me but I was better when I started it so I am not sure how it would have worked in the beginning.

dizzyinaz,
So sorry to hear you’re feeling so lousy. I tried PT and it made me feel worse so I stopped. It wasn’t VRT, it was manual therapy where they did neck massaging. I remember afterwards always feeling a little worse, and then it would take a few days to get back to feeling my “normal dizzy” self. It might be something to talk to your neuro about, b/c you certainly don’t want to do anything to make yourself feel worse. I agree, that it could be stirring things up more than helping at this point.

I know it’s tough, but try to hang in there. I remember my first visit to an ENT when this all started. She was the one who initially suggested migraine. She told me that 25% of the patients she sees have exactly the same symptoms as me and that she would end up referring to a migraine specialist…25%! So, I’m sure there are many people out there who have experienced similar symptoms and are most likely better or getting better with the right treatment. I think for those of us who visit this board, we have either not gotten the right treatment, diagnosis, etc. or we haven’t found a doctor who has us figured out…(all of the above for me until recently!)I do believe there is something out there that works for everyone. We all have such different symptoms and are bodies/brains are so complicated that it’s no wonder there’s not a “one size fits all” treatment. You WILL find something…just keep trying and don’t give up!

Thanks Colleen
It means so much to me that there are people on here who are so supportive. I’m so happy that you are getting better. :slight_smile:

Hey Scott,

When I get better I’m definitely taking a trip to Australia again, I loved it! I didn’t get to say any other cities but I want to go back someday to see the Great Barrier Reef. If I make it back there, we should meet for lunch or something. Everday I lay down before I go to sleep and just picture myself healthy again and being able to travel. I’ll get there someday.

Personally, I can’t take meclazine without falling asleep for about 18 hours. I was also told by the doc who diagnosed me not to take meclazine for MAV, she didn’t tell me why just told me to stop. Every doctor has different opinions though, so if your doc says that it is OK to take, go ahead.

Valium per my doctor is not addictive in low doses, I took it daily for 18 months without a problem of withdrawal. I now take Klonopin on a daily basis, and continue taking valium on an as needed basis. If I take the valium soon enough, I can usually abort a mild dizzy spell. If it is a bad dizzy spell, or I take it to late, then I double up and curl up on the couch for a long nap. I would take the nap anyway because of the fatigue created by a more severe dizzyspell, the valium just reduces all the other symptoms so that I can sleep more relaxed and wake up less out of it.

On another forum that I subscribe to the benzo subject is brought up often, and you get one group of people that will tell you every benzo is addictive at any dosage level no matter what the doctors say and to stay away from them even if your doctor says there is no problem. Then there is the group of people who say, you know what, if it improves your quality of life and allows you to actuall function outside of the house, then why does it matter? Personally, when it comes to benzo’s because the potential for addiction is there, more so at high doses, you should talk to your doctor about them. Whether it is just starting, increasing the dosage, lowering the dosage, quitting, etc.

Brian