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Relapse after 3 years of almost normal


#1

Hi all, been here before. So yes, it’s a relapse story. The upside is, I have been fine for 3 years. The downside, the true vertigo has come back again.

So in short, I have started experiencing imbalance and true vertigo attacks (lasting for up to 5 minutes) in 2011. Have been through all the testing, diagnosed with right vestibular damage. Have done VRT for imbalance (took about 2 years to almost get back to almost normal in terms of everyday imbalance issues - I’ve learned to live with it), was on magnesium supplements, no other meds. I had my last attack of true vertigo in June 2013 and then it quieted down for about 3 years. In November 2016 my husband was in a terrible car accident (spent over a month in a comma, brain edema, hemorrhage, torn livers, damaged aorta and what not - he’s fine now), and the vertigo attacks came back. So am pretty sure they are stress related. This conclusion is also supported by my having only one attack per month when my boss was absent for a couple on months, when she came back, it got up to 1 per week on average :slightly_smiling_face:

I am now back on magnesium and doing VRT. But my question really is, do you have any suggestions on how to cope with stress. My attacks come out of the blue, no warning, slight spinning at first, then on to a full blown merry-go-round. I experience imbalance issue afterwards, brain fog, fatigue, false motion - think I decompensate a bit after every attack, but then it goes back to normal (my normal, not 100%).

Thanks for your suggestions.


#2

I wish I could do more than empathize with you. I was first diagnosed about sixteen years ago…took a long time to recover/compensate. I did well for many years with only minor inconveniences, although I was never “normal” again. Then I had a full-scale relapse this past October.

I never had vertigo the first time, just imbalance and fatigue and brain fog. This time I have the added vertigo and nystagmus symptoms in addition to everything else.

My vertigo is the same as yours…sort of slow intro to spinning then full on. I feel wretched afterward, and that feeling lasts for days and weeks. I’d love to hear if anyone has had success with getting rid of or better dealing with the vertigo attacks. They are my biggest frustration because they seem to have no warning and no trigger.


#3

Hi… When you say imbalance, plese could you explain a bit more how that felt?


#4

Sorry to have to welcome you here because it means you are suffering. Assume you have a MAV diagnosis? Stress will certainly have huge effect on it and boy you have had some. As yr husband’s improving, so should yr stress levels. Cannot think of any anti-stress ideas specific to MAV. Somehow you have got to learn to RELAX. Lots of long walks looking at nature might help, more’me’ time, long soaks in the bath whatever YOU fancy, spend more time doing things YOU enjoy, stop trying to be Wonder Woman - I say don’t get a duster, GET A LIFE - outside of work and domestic chores. Try yoga, Tai chi, meditation, deep muscle relaxation but it’s GOT to be something you believe in and enjoy. There’s also CBT and other therapies. Get a new totally absorbing hobby. Maybe, in yr case try to change yr job, though that’s not necessarily always possible I know. There’s lots on the internet about stress reduction techniques. Identify triggers where possible. And kill them off although not yr current boss sounds like she’s one. That’s not the idea.

With regards to the vertigo

Are you really sure you can’t identify any triggers? With migraine they can be cumulative, not direct. Some of mine take 36-48 hrs to kick in. Try keeping bit of a diary for a while. Look to what came before.

It’s hard to tell from yr brief description but assume you are having vertigo attacks - with/without headache - as a migraine. How long do they last. How incapacitating are they. Do they render you unable to walk? Assume it’s more than BPPV type couple of minutes attacks. Whichever. What you decide to do about it depends really on how much it impacts your life. If the vertigo is a symptom stemming from the migraine syndrome and from my own experience I’d say taking migraine preventative meds gives you best bet of getting rid of it. I had episodic vertigo attacks for 10 years, at that point they would incapacitate me for about 72 hours then disappear as quickly as they had arrived and in between I would be completely normal but, sorry to be the bearer of possible bad news, mine got worse. I started getting breakthrough symptoms
Between attacks and then after an attack in December 2014 the acute attack stopped but the spinning went OnandOn, hence my username! I’ve a theory it’s much easier to control episodic MAV than it is to control chronic 24/7 MAV. Of course this is just my take on things but MAV does ‘morph’ constantly, that’s about the most consistent thing aboit it.


#5

Imbalance for me means feeling like I’m on a boat 24/7, whether I am sitting or standing or lying down. Walking feels like the floor is moving under my feet…again like being on a boat in the rocky waters.

I’ve also had push-pull feelings both forward and back as well as side to side. And then there’s the feeling of dropping out of nowhere.

I haven’t been able to identify any triggers for my vertigo as I stay on a very strict diet and sleep schedule. I don’t cheat here or there and only eat foods we prepare at home with Whole Foods. Nothing processed. On this routine I went four months without a vertigo attack and then without any change and not during any weird weather I had two attacks two days apart. That’s when I started a daily preventative, on which I went two months without a vertigo attack and then two more attacks without changing my routine.

It’s very frustrating and I feel for you.


#6

I honestly feel the only way to get better is finding the right drug along with diet and exercise. But when you’re feeling your worst it’s pretty hard to think about anything diet or exercise related. You just want relief! Finding the right doctor is the most important thing you can do to get better…there are many different drugs out there to help and everyone suffering from MAV needs to find the right drug or drugs. I sound like a drug pusher, I know, but I’m convinced it’s the only way to become symptom free!


#7

You nailed it.


#8

Hi medunja1,

I’m sorry to hear you are suffering these issues again. It’s a hard place to be. However, you display a lot of self-awareness and I suspect you are going to be on top of this again soon.

The fact that you handled this issue without any medication tells me that you’re tolerance level is high, but that you’ve determined that you’re not broken, rather… stress/anxiety has activated a condition to express this life trauma.

By the way, on the scale of life issues which seen to affect mind/body pain… what you went through is near the top of the list. The massive stress of a love one facing mortality, coupled with the stress (and resentment from subconcious mind) of having to care for them.

It’s also extremely common for xyz condition to make itself known AFTER the stressor has passed. (Backs go out, migraines start, stomach issues start, panic attacks, etc.) It’s almost as if the mind keeps it together so we can face the threat… and then has to express that stress (expunge) later.
This is a story I’ve heard literally hundreds of times in studying these issues. We never break down during the trauma, we break down after.

Your question was… “how do I manage the stress.”

That’s a deep question, but in the very little info I have from your post… you don’t sound terribly afraid of the condition. (Fear is what perpetuates many condtions.) This isn’t to say it doesn’t make you miserable, I’m sure it does. But from an outside view it sounds like your life has challenges that your mind may not appreciate. How well do you express your displeasure? Are you a people pleaser? Are you a perfectionist? How is your day-to-day stress? Do a lot of people rely on you?

A great place to start to explore some of these stress/pain issues is TMS Wiki. (Google it.) Loads of people there to help you get started on tackling these stress-related issues, particualrly ones which lead to mind/body issues. (You’ll find dozens of people there who suffer or have overcome migraines… maybe hundreds over the years.)

You can also check the work of Dr. Howard Shubiner or John Sarno. (Books, stuff on Youtube, etc.)

Be kind to yourself. Your body is expressing difficulty to you. I suspect you’re the type who will listen, and get back on track.

Good luck. You can PM me if you need any other info.


#9

It used to be rocking motion, side to side, front to back, and felt like walking on water. This resolved after say 2 years of VRT. Now it comes back after the true vertigo attacks, or sometime manifests as just as a fleeting feeling of very quick false motion to the side, sort of a jerk, or as if I would go for a spin, but ends half way to a full circle.


#10

I have the rocking/on a boat feeling now myself. Working through it. Was concerned I may have injured my inner ear working out, as time goes on… I’m becoming more convinced it’s stress again.

Ironically, just got a message from my work-mate who can’t make it in today. He went to urgent care with vertigo this morning. I’ve never heard anything from him about this kind of thing.

He’s been under massive stress this past 3 weeks with a son who is in some trouble.

Probably not a coincidence…


#11

Many thanks for your reply. Triggers for me are stress, as I said, guess chocolate would also qualify (I eat it rarely as I do not really like sweets). I have quit drinking coffee when my migraines started (yes, before any balance issues) - but there was never any pain involved. My migraines were basically loss of part of my visual field that would last for up to 30 minutes, sensitivity to light, extreme fatigue, difficulties finding the right words. They did have a precursosr and if I took an aspirin at the right time they would be of a lesser intensity or completely aborted. Unfortunately that doesn’t work with vertigo attacks.

These last for up to 5 minutes, and do render me unable to walk, I have to lie or at least sit down and keep still until it passes. I also have nystagmus. Sometimes I can be fine really quickly,like in an hour and other times I have to move as little as possible for about a day - not that I am still spinning, but the brain fog that descends on me basically renders me incapable of doing anything., I just feel my head is a gigantic balloon that keeps on inflating. The thing for me is, that I do not feel stressed out all of the time, just episodically, but the damn attacks keep coming anyway. Guess there’s something deeper down than meets my eye or my conscious mind that keeps eating me away.

I think you are right, MAV does morph constantly. Are your spins now true vertigo or rocking motion?


#12

Thanks for your reply and kind words and suggestions. I guess I have never allowed myself to break down since the accident and surely all the stress must be released somehow. I did start trauma counseling a few months after the accident, had about 10 sessions, until the doctor said I was managing well. But it was a weird experience, felt at times as if I was faking my answers to present myself as managing well…so I could be there for my husband and my family. I think I need to go back and now get myself better for me, not anyone else. Not sure what’s holding me back, though. On a rational level I know I need to do that, but not sure if I will be able to handle emotionally.


#13

Triggers can be cumulative. Or delayed by days sometimes. Once the system goes a bit hyper, it doesn’t take much to push it over the top. One consultant compared MAV to a jug, gradually filling to overflowing. If you have demons you do need to turn and confont them. The longer you avoid something the bigger and more scary it becomes. Psychologists call that avoidance anxiety.

I don’t have any headaches either.

My attacks were always true vertigo (the room spinning fast and constantly) but lasting much longer than yours. First one ever less than 2 minutes I’d say, then longer and longer 48-72 hours, eventually 8 whole days. Then true vertigo constantly 24/7although to be truthful I didn’t usually feel it in bed at night so strongly. Not every night, all night generally. It’s currently more of an imbalance but only today I noticed even that’s true vertigo cos it is rotary, I’m going round very slightly the last couple of days, alot of the time but not 24/7. Have occasionally had the rocking sensation too but with mine I always think that’s halfway between the 24/7 true vertigo (self motion) and the milder imbalance. All different manifestations of the same thing really.


#14

Sarno called the first bolded comment “The Goodist.” The person who puts themselves second and everyone else first. (This sounds noble but is usually built on a foundation of insecurity… which is based on fear… and anything based on fear perpetuates all conditions that are not directly and only of physical cause.)

The Goodist serves all others first, is usally praised for doing so… but often our minds deeply resent this. At least that’s a big component of a lot of TMS theory, and it makes sense. People will often admit through therapy that they are indeed angry about having to care for others, sometimes enraged. But these emotions never come to the surface. (Because it would be socially icky to admit that caring for a sick relative is hard on us.) They stay buried and that of cousre will cause the body to wreak havoc.

The other theory plays to your last comment that “you don’t know if you can handle it.” This is common, and we all have a hard time facing these things. One other theory of mind/body concepts is that the mind will actually use pain as a way to avoid emotions it fears are more scary. Rage is one you’ll hear a lot. Though I think deep sadness for some is more scary, so… the mind (in theory) will create pain to distract. (J. Sarno, Shubiner, et al)

I can tell you a quick story about this…

I have two different friends who had two very similar situaitons happen. They don’t know each other. Have never met. (Tom and Jaime)

Tom and Jaime both had aging parents who were sick. Sad situation, and they both had to leave town (Los Angeles) to go back to their home towns to most likely deal with their fathers passing.

Tom and Jaime are both rocks. They are never sick. Absolute ironmen. Strong, never complain, no issues.

Separately, at different times… days before they were each set to go on their trip… both of them threw their backs out, badly. So bad they couldn’t walk. Tom barely made it on the plane. Jaime the same. (And he had to go to France.) Tom was in agonizing pain, drugged himself up to be able to go. Absolute misery.

I asked Tom… how did it happen? And he said… “I was just reaching for my suitcase…”

I asked Jaime, how did this happen and he said… “I was just packing, just moving things around getting ready and it siezed up.”

Think about all they were going through… and these two strong men were brought to their knees by moving a little suitcase around?

Please.

When I see things like this happen, it solidifes my belief (and scores of others) that the mind can and will present one pain if it feels like its a better alternative to another.

Btw… both came back from their trip… backs got better… and neither has complained about their backs since.

Always seek proper medical evaluation… but I highly suggest you look into the sites/info I posted above.
Things are going to get better. It can be complex unwinding this stuff. But we can do it.


#15

For me, the diuretic and low salt diet had the best effect on reducing attacks. Not attacks progressed over the years from minutes to an 8 hour area k. After that one I was started on triampterene/hctz after which i went a year with no attacks. I tried to lower my dose of this as i was still feeling bad and blaming the diuretic but then had a severe attack with 4 days in the hospital. I have been religious about taking it since then (2 years) and also have other methods to avoid attacks including valium which provides quick help and lowering stress until the feeling passes. To me my steady state is worse after each attack so I am very focused on avoiding attacks. I am doing very well today but still very imbalanced.

Good luck

Dave


#16

I soooo agree with this! I believe that the mind will cause the body to revolt if issues are not dealt with. I’ve been thinking about this, and I’m almost at the mindset that any emotional stressor (chronic or acute) should be dealt with immediately with good counseling, exercise, meditation (whatever works), in addition to removal of stressor if possible, to avoid physical manifestations.

Example? In my early 20s I was in a negative relationship. I was unhappy but felt trapped. I began to suffer from either chronic fatigue syndrome or fibromyalgia, and was pretty disabled for abt a year. I became very dependent on my partner. Well he got tired of my illness and left. After a short period of panic, I started to get better very quickly. Within a month I was back in school and working :slight_smile:

My stressors now are an abusive boss ( long story) and horrible commute. I’ve been feeling trapped again and looking for a workable solution…