Hello/getting worse, feeling useless to my family

[BradT81]

@sputnik2 no he is not a MAV specialist, just a regular neuro. Truth is I don’t feel like he cares enough to really help so I am going to look into Boston for someone better. I am about 30 mins outside the city. Much better drs in Boston

I’m glad you got a little better. Hopefully this is my summer lowpoint and I can come out of this funk. It is such an invisible disease. My extended family just thinks Im a jerk that doesn’t want to do anything or go to any functions, etc. I feel bad but I just can’t. Social situations ramp everything up. Does anyone else have this? It’s like the minute I am around people I get worse. I have always had social anxiety but MAV has brought it to a whole new level. Scared I’m going to just spin out of control while talking to someone

[flutters]

On the bright side, if you do spin out of control it won’t be invisible anymore. Educate yourself on MAV. This site has links to many useful sources. Read Dr. Beh’s new book. Leave it lying around the house. Bring your wife to the neurologist visit. And yes, do find someone who knows MAV.

[dizzy3]

My very immediate recommendation is to start therapy. It has helped me in very profound ways the last months, somewhere I can vent and cry and be angry about having this. But most importantly, it has given me the strength to go find other doctors, stick to the medicine, have faith in that doctors/ medicine/ and my daily work can bring me back to a good place where I enjoy life, being a mother, and can work. Let me tell you, it is working. I am seeing somebody that works with body and mind. Not only cognitive behavioral therapy, but find somebody that does body work as well. This is their website and the difference between cognitive behavioral therapy and somatic psychotherapy: https://nccenterforresiliency.com/what-is-cbt-vs-somatic-therapy/

[dizzy3]

Another thought, there are excellent doctors in Boston. Go find someone that has experience in MV, and also is willing to go through the trial of medications with you. Set the goal together, that you want to be your functional self again and go from there.

[BradT81]

I am looking for a CBT therapist. It seems everyone is doing telehealth because of Covid. Is this what you have been doing? I feel like it won’t be as helpful as in person.

[Onandon03]

Just Get hold of Dr Raunch.

[dizzy3]

yup, I have been doing teletherapy since mid March, extremely helpful still. Look for somebody that does somatic work too, would be my advise. Your work with your body as well.

[LAM130]

Dr. Priesol is very good too. I tried to get in with him when we had to travel to Boston for an eye surgery for my daughter. It didn’t work out, but I know there are a few people on here that have used him. Whomever you choose, Boston has the best doctors so you will be in good hands!

[Naya]

@dizzy3 Is somatic therapy the same as seeing a health counselor or a pain psychologist?

@BradT81 I have days where this gets to me, too. One of the most helpful things a family member said was that it’s not for me to decide that I’m a burden to them. Assuming that I am or that my condition is “too much” for them to handle is underestimating them. Also, thinking of how I’d feel if the tables were turned helps me put things in perspective.

[Nate]

Hey @BradT81 have you considered taking some medication for depression and/or anxiety?

Sometimes it can be really relieving to seperate the experience of depression/anxiety from the experience of MAV.

Because I think with MAV it’s quite a vicious cycle in that mental health issues interfere with your recovery, and also make symptoms worse. You can end up with a bad cycle of depression/anxiety → more vertigo → more depression/anxiety → more vertigo → etc.

Personally for me, medication for anxiety has been extremely effective. There’s really no medical reason you need to live a life filled with anxiety anymore as there’s so many effective drugs out there you can take if therapy isn’t helping enough.

The way you wrote your posts really reminded me of the headspace I was in before I decided to deal with my mental health as a seperate issue to MAV. I spent many days in deep cycles of depression and anxiety that made it difficult to even go to the toilet or leave the bed to turn on a light.

I sincerely promise you that it’s possible to get your anxiety and depression under control even if you can’t improve the MAV, and that when you do that it does wonders to your quality of life. If you aren’t anxious anymore you will be able to socialise even while dizzy. If you aren’t depressed anymore you will be able to feel dizzy and not experience these feelings of low self worth as a result. Depression and anxiety come with MAV but they are very different symptoms to vertigo itself and much more responsive to treatment.

Wishing the best for you,
Nathan

[BradT81]

Thanks @Naya that is actually really good advice

@Nate I have been on Klonopin for 3 years and it was great at first but I think it lost its efficacy

[dizzy3]

@Naya I don’t know the answer to your question. Somatic therapy is a specific approach to work your mental health alongside with your body. Their theory is that your body has memory and a lot of our life experiences are stuck in the body. By releasing tension, touching your body, massage, etc, you are letting of go of some of those emotions. Here is some info of the place I go: https://nccenterforresiliency.com/what-exactly-do-we-do-nc-center-for-resiliency-pllc/

[dizzy3]

@BradT81 Klonopin should be used as a rescue med, both for anxiety and MAV. Long term use results in what you are experiencing, the body adapting to it and needing higher and higher dose.There are long term options for treating anxiety / depression, which by the way, also are recommended for MAV. One of them is venlafaxine. I used it for over a year at therapeutic dose for depression/ anxiety (150mg) and it really helped me get out of the whole, and did help with some of the MAV stuff. I am currently taking propranolol, and it helps with anxiety too (in different ways, it calms the body manifestations of anxiety). If you read around there are people that have had good results with other SSRIs, and tricyclics, like amitriptyline.

[flutters]

Great post Nate. Welcome to the family!

[lsengara]

Definitely know the feeling. For quite some time after the accident that ramped my chronic migraine/vertigo up to disability level, I was prepared to say goodbye and allow my partner to be happy without me and go on with his life. I was not the same person, why would he want me? If we could not have the life we had before, what was the point? Why would I burden him in this way, even though he had been nothing less than totally supportive? My quality of life was so low, I had nothing to offer.

It was pointed out to me that this was not my choice alone to make. Like mine, your family likely loves you very much and values your presence, and needs you, even if you can’t do everything you once did. Believe me, I feel like a failure as a partner, but it seems I have some worth that is unrelated to my ability to make a living or to being thin, athletic, good-looking and socially outgoing like I used to be.

What definitely was hard for my partner was to see me crying all the time. So, whatever one can do to find a more hopeful perspective is necessary. For me this was time and finding some drugs that worked a little better, and just managing my expectations of myself. Others recommending therapy are wise, perhaps especially a practitioner who specializes in chronic pain.

While it may feel hard to see right now, things will get better. You may well have improvement of your symptoms with good medical care. While the trial and error of drug treatment can be stressful, it is the standard treatment route for this illness, and there are some powerful options available. Also, it’s possible to have a more hopeful outlook on your life even if nothing changes—you can come to more acceptance of your situation and its limitations, and stop fighting it as much.

Definitely not a one-way road: last week I was feeling melancholy and was thinking again that I am a useless partner and how can this go on. Fortunately he is good-humoured and we were able to laugh about it and I was reminded I that I do not get to single-handedly decide to improve his life by taking myself out of it. Your family loves you and needs you around. They may not be able to really understand what you are feeling, but they love you.

By the way, don’t worry too much about your extended family. Someone needs to tell them that you have a serious neurological ilness that is exacerbated by noise and crowds.

[BradT81]

@dizzy3 i started nortryptaline about a month ago i am on 20mg i am going to go up soon. As for the klonopin, i have a feeling its doing more harm than good BUT if i dont take it i cant function. I am on 1.5mg per day. Would you guys recommend coming down slowly?

[flutters]

Yes, I would recommend tapering off the Klonopin. It’s past it’s helpful stage. It sounds like it’s creating the vestibular equivalent of a rebound headache. That’s not somewhere you want to be trapped. Curing rebound is hard. At first you get off the med and feel so much worse. Over the course of weeks you slowly kick your brain’s addiction to the med. Only then do you know your true baseline. That also sucks. But it’s the first time since you started the offending med that you have a clean slate and can give the preventatives a real shot at working.

Eventually you might consider vestibular rehabilitation therapy. You need to get at least partially stabilized on a preventative med first so your brain has a stable platform from which to learn how to compensate. Once you do get more stable, VRT can help your brain learn to compensate for the loss in vestibular function. Our brains are remarkably adaptable. VRT is the school where your brain learns to work around the dysfunction. For me VRT took me from disabled to functioning.

[dizzy3]

agree with @flutters There is a process to go off benzos though, talk to your provider about it. Probably the last bit will be the most difficult.

[flutters]

Oh yeah! Talk to your provider about weaning off. @dizzy3 is absolutely right.

(Don’t go off cold turkey. Though when I told my provider I quit Effexor cold turkey he choked on his tea and spilled it. That shouldn’t have been near as funny as I found it. )

[BradT81]

I would never go off cold turkey. The idea of weening down slowly terrifies me But I know it is holding me back from getting better. Anyone have any tips like supplements that can help? I have heard Niacin and Gaba. I will search the forum as well and maybe create a new post if needed