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Hello/getting worse, feeling useless to my family

Hello, I am a long time reader and first time poster. I wanted to introduce myself.

I have been dealing with what mostly seems like MAV for 14 years. I am dizzy with head pressure 24/7. I had a downturn a few years ago and got on Klonopin which helped for a while but now does not seem to do anything. I started Nort about 3 weeks ago still at 10mg with no change. I think I will try upping to 20mg tonight.

Anyway, I feel like I have just continued to get worse over the last 14 years. I see a lot of people here that go up and down. Mine is on a steady decline to where lately some days I am bedbound and contemplating suicide. Which I get really mad at myself for, because I have a wife and two kids, one of who is severely autistic.

I guess the point of this post is to introduce myself but also ask if people ever get better after such a long time. Also, how long does Nort usually take to see a difference? I have tried Ami years ago and it did not seem to do anything, but now that I think of it I was in a much better place then. Not sure if it was the meds or not. That is why I decided to try Nort. I also have tinnitus so I am deathly afraid of new meds making it worse. I got mine from ototoxicicity of quinine (I believe).

Anyway, good to be here. I am just feeling VERY depressed from this spike. It happened about 3 months ago and only seems to be getting worse :frowning:

You summed it up in your last paragraph. You are ’ just fee!ing very depressed from this last SPIKE’. It happens. It too will pass, as if you dig deeply having had this 14 years, deep down you already know to be the case. You just need to hang in there and try and distract yourself with something absorbing until it does whilst doing everything possible to keep yourself as comfortable and safe as possible.

Will it get better after 14 years? It sure could but you may need to make some sweeping changes to achieve it. Nortriptyline might well be your answer. You will have to increase slowly and be patient in order to find out. If not there are other possibilities drug wise. Keep on searching. When it comes down to it it’s not so much a question of it ‘getting better’ as much as one of finding some way to get it under control in order to give you a better quality of life. There are and have been others on here who have had it longer, me included, And achieved that. No reason why you shouldn’t follow suit.

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Thanks for your reply. I just feel like it has gotten worse and worse but it has been manageable. Now we are getting into bedridden territory. I am trying my best to stay positive but some days I just feel like its impossible.

I’ll give the Nort a good chance. I have gotten over my fear of meds with this getting as bad as it is. I am now willing to try anything. Thanks again

Hi, I don’t have the same experience with all this as you at all but I really felt your message and just wanted to say hang in there. There are so many ups and downs in this ridiculous situation we all find ourselves in. This is obviously a major down for you but the ups will come again, even if they are/feel small. The patience needed to get through this can be one of the hardest things, especially when we just want answers or change for the better now. Look after yourself and I hope you have some luck with your new meds xx

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Hi Brad,
I’ve not had VM for the length of time that you have but there are many here that have. I do know however the feeling of desperation that this illness can cause. It can shred every bit of willpower that you think you have… yet… Brad, you keep persevering. I keep preserving. We all keep preserving some how.
We must… and in 2 months from now, 6 months form now, a year from now, we look back and realize how strong we were, we are and how far we’ve come.
Persevere with Nort, increase your dosage (I’m on 75mg), do the diet, take the supplements, make yourself move.
No change? Move on and try another med. Repeat.
You can have quality of life again… I promise!

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Thanks @Naejohn did you feel anything at 10 or 20mg? If not, which dose did you start to feel any better?

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Hi Brad, I tinkered with 10mg for a month or so because I was too scared to take more… then I decided to go “all in” finally. My titration schedule was aggressive though with 10mg increases every week. I started feeling positive affects around the 30mg mark I’d say. But of course everyone is different. My personal opinion in just seeing others here and my own experience is that 10 & 20 mg will help you sleep well but may not provide much in the way of real therapeutic relief that you clearly need. What has your Dr have planned for helping you through this awful time? If he / she does not have an aggressive plan… it may be time to find another Dr. You’ve suffered far too long and need the support of a Dr who is invested 100% in fighting this fight with you.

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From my experience you will be dizzy which means you have balance issues until you can stop the head pressure. That is the crux.

Others may suit me down in flames but after 14 years control lies through medication. Untreated MAV tends to just get worse, mine did. It is very individual as @Naejohn said but most people seem to settle around 70mg but you do need to go low and slow. You don’t want to end up taking more than you need but you do need to be taking sufficient to gain control otherwise it’s a waste of time as I found out to my cost.

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Hi Brad
I know this is a vertigo forum but I would like to address something else I think could help relieve some tension for you. The love for autism is like trying to take a piece of puzzle from yourself and fit it into the missing pieces for your child. You want them to be safe. You worry about who will care for them in the future. You as a parent, you suffer daily without ever being able to share the daily pain of anything you can’t do anymore like you used to before your child was born. It sounds so bad to say it. Parents need to say how they’re feeling without thinking others will judge them. So many fathers leave because the relationship changes between the wife There are so many differences of opinions in one home of how to care for your child. One wants meds the other doesn’t, one wants to do applied behavior analysis and the other might want to do the old fashioned spanking… the hardest thing though is you really can’t express your feeling of deep pain you feel as you get through each day. A child with special needs always shakes a family up and the dust never settles but with it comes a whole new set of rules you didn’t even know existed. All of society’s expectations in restaurants, school at hotels and especially every unscheduled surprise makes a joke out of what is considered acceptable. These families become very protective of who they allow in to their circle The personal growth from the experience has given you more wisdom than most. Having vertigo/ head pressure through this must be brutal. I can’t even imagine the daily challenges you have. I have spoken to a lot of single moms who have a child with autism and if they could tell you anything it would be please stay. Please just rest and be patient while you work on feeling better. The mom and wife in your home needs you and just you being there is so valuable because these super moms can’t be alone in the home single without support. You might not think you are contributing enough but I promise you that you are. You have strong feelings about so much but for now just let those feelings go. Find peace in your brain, take the advice from people who know their meds on this forum and stay connected daily. Keep sharing. You are not alone. Addressing emotional pain in areas unrelated to the vertigo can eliminate it and if you follow the diet( cant stress that enough) it will make all the difference. Also I forced myself to walk and it helped a lot. I went to a chiropractor and it helped with noise issues. I went to Active Release Therapy and she put her fingers right in my mouth pressing out the tension. I was in agony through it but it really helped. We hold tension in our bodies, we clench our jaws, we feel anxiety because we have to wait it out, wait wait wait. You will feel relief. Your kids will get so much quality fun time with you now even if its a chat while you lie down or in the future when you go hiking or camping.

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Thanks for that :slight_smile: Yes handling a child with autism is both physically and emotionally difficult. My wife is a saint. You are right about me feeling guilty for not being able to split the responsibilities 50/50. Hell I would be happy if I could do 70/30. Just changing his diaper makes the room spin. I hate this invisible disease. Luckily she understands but a lot of my family does not. Im sure you all deal with stuff like this. Anyway, thanks for the insight. I am working on getting into meditation and trying to keep my focus off my MAV. Hopefully I see some improvement with the meds

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In 2013 I booked a Beaches vacation for my family. I saved all year to make it happen. I ended up with vertigo in November and was off work but still had holiday booked during Christmas break that was coming up. I needed heavy duty meds for the plane. We did nothing there we planned, no horseback riding or side trips up the mountain. I had one good day in the 10 so had family pics done. I looked great, I was beaming actually because I knew how special that day was. My husband and kids were beaming because they had me for a day. We got home and I posted the pictures on Facebook. How did it look to be off work on short term disability looking like a million bucks on an island. Family and co workers will judge. Let them. I have those wonderful pictures and I found value in our togetherness the whole trip. I had to pay with judgement later so probably shouldn’t have posted them on Facebook but why do I have to hide my good days so people don’t doubt my bad ones. Don’t worry what other family thinks because its just one more thing holding you back. Another thing that happened a lot was my husband would ask how I was as soon as I opened my eyes. I thanked him for his concern but told him every day I wake up I want to forget about it. Doing meditation is so good. Just taking the whole MAV thing out of the equation is a good plan even if it’s for 15 minutes, all but the basic things you need to remember to try to improve it. Sleep is huge for me. Getting up too early like 5am was huge. Head pressure every time if I didnt find time to have a quick nap. Your baby might need to be tended to in the middle of the night. If you don’t rake that shift and get sleep then you might find big improvements. Its all about monitoring and seeing patterns so YES forget about MAV but at the same time keep track if it all.

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I have been up and down on Nort over the years and it does not help me until I get to 50mg, so this is the dosage I have continued on. At this dosage it definitely helps me with the head pressure, so in turn, that improves the lightheadedness and dizziness for me.

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According to a lot of the guidelines I have seen 50mg is the entry level recommended. Many on here seem to have found some stability at at 70/80mg mark. My observation.

And as you say bringing down the head pressure is The Key to gaining control over the dizziness hence Dr Silver’s insistence on achieving those ‘crystal clear head’ days.

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I am new here but have had MAV for over a decade. It has been worse the last fee months. I am a father of two.

My daughter is having a sleepover and they want to sleep on the big trampoline outside with a tarp over it. I just went out and tried to help with the tarp and felt like the world was spinning so my wife had to go out and do it after being with them all day so i could go in and sit.

I am sitting here balling my eyes out because I feel like such a pathetic failure of a dad and husband. This happens all of the time and while my wife is very understanding, I can tell she is getting tired of it. I am honestly thinking of just leaving because I am so f*cking useless. I made a lot of money when I was doing ok so that isnt a problem, they would be set financially. I just feel like everyone would be better off without me. I feel the most stressed at home and the most dizzy at home because I feel so depressed. I almost feel if i took some time away i could focus on getting better rather than feeling so crapy that I cant do anything. I know people will say being here is better than not but I honestly dont think so. I am absent even while I am physically here.

I guess I just wanted to get this off my mind. I started nortryptaline about a month ago and i dont feel any better. I just feel hopeless. Does anyone else feel this way? Just a horrible parent and spouse?

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No, love. Just no. You are not a pathetic failure of any kind. You are not useless. You are not a bad dad. You are not a bad husband.

You are disabled. You have challenges others thankfully don’t have. That does not make you worthless, unlovable or any other horrible thing you’re telling yourself.

But, you must take steps to reclaim your life. I have had MAV for a very long time, too. My superstar status is gone, and I wish I could forget I ever qualified for that label. But we are so much more than our ability to financially provide. Reputation and status have no meaning whatsoever.

Good for you for starting nori. It sounds like maybe the dose is too low. One thing you can do to reclaim your life and your worth in your own eyes is fight for your health. Call your neurologist and explain you aren’t seeing the results you should. Up the dose, move on to another med or try adding another one.

Are you following the migraine protocol with respect to diet, exercise (yes it sucks, do it anyway), sleep and trigger avoidance? Have you educated yourself on all the things we can do to get better? If not, stop wallowing and start there. Reclaim your life and expand its boundaries. Fight for yourself. Get as much of your world back as you can.

You need to see a therapist who deals with chronic illness, specifically one who has some experience with invisible disabilities. You need to go and eventually you need to bring your wife. The depression can be worse than the rest of MAV. Get a handle on it.

You have power. Giving up and slinking off does no-one any good. You are worth more than that. Get angry, take your power back and fight for your life.

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Brad, I wish I could say something profound… something that could give you a bit of empowering momentum to reclaim what you feel like VM has stolen from you… but in truth, I am lost for wise words of wisdom. My dear friend Emily (@flutters) however has written everything that is on my heart.

We’d all love to know more about you. I see you joined the forum recently, maybe get a personal diary going and tell us more about your history and what your going through currently with treatments etc.

Please try not to be so hard on yourself… the stress your putting on yourself is adding to the viscous cycle of stress that is so harmful to triggering the episodes. Your family love you and want nothing more than for you to be happy and well. Let’s work on that and the rest will fall into place.

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Thank you both of you. I did well dealing with this for so many years but things have gone downhill. I have tried the diet but did not stick with it because it didn’t seem to matter what I ate. I can’t identify any triggers. Latley it is just always bad. I know you both are right, I am just in a bad mental state right now. I went to a natural healer today and got some new supplements. I have some other plans as well.

Thanks for your help. I will start a diary and start being more active on the forum :heart:

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Welcome Brad. We’re here for you. We understand. We’ve all been there, more than once.

:heart:

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It’s very easy to become negative with years of MAV and depressed. Look again and count your blessings. A supportive spouse is worth their weight in gold. They really are. All they want to do is look after you until things get better. It’s wonderful. So stop wallowing. Convince yourself those tears were just tears of pure frustration. From a purely practical viewpoint doing such things particularly outdoors is the most difficult task to tackle with a balance disorder. I tried ‘helping’ put up the gazebo recently. Useless. And I still cannot hang out a full wash. Such tasks obviously require operating bits of the balance system we currently lack. Still it will improve. As @flutters says you are on meds which must be the right road. Get back on that diet strictly. Have patience to continue with it whether you see improvement or not. Just keep the faith. And when you are really bored and can’t sleep read a bit of my diary. It’s long, far too long. Just like my MAV journey really. Suggest the start and then one post entitled ‘Photophobia’. Just an example of how things will improve. So just hang in there.

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Hi Brad and welcome

I’m sorry you have had to find your way here. Don’t be so hard on yourself, you have been holding it all together for years and as others have said above, you have an illness. You may not be able to see it but it is just as debilitating as other conditions that are more widely known. It’s great you’ve started on Nori but you have to be patient and work slowly to get up to a dose that is therapeutic for YOU (I know be patient is probably not what you want to hear) and remember if the Nori isn’t a good fit for you there are plenty of other meds and therapies to try or add in on top. Is your prescriber a MAV specialist?

Things will improve, I was untreated for MAV (misdiagnosed as Menieres/endolymphatic hydrops by numerous docs) for decades and after a bad spell I always improved again (although it never went completely) with time. Thankfully, I now see a proper MAV expert and my life is getting better. I saw my specialist as I was basically bedbound for a whole summer, the worst I’d ever been and I felt really vunerable and down about everything and like you, felt useless, a failure and things felt very bleak. I just wasn’t thinking straight at all. Perhaps you are also in that space. As I got a little better my mood also improved, pretty sure it is part of the syndrome. So I think you shouldn’t make any big decisions or rash pronouncements at the moment.

Take the meds, rest up and let others help you (I find this very hard). All the best and vent here as much as you like.

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