Why people don't get well

Specific Illnesses & Conditions VM/MAV
1

Hi All,

A post on the Facebook group made me think about this today and I thought I should post it here. I see it often on Facebook where people just never seem to get well and then begin thinking that they are dealing with something entirely different that has nothing to do with migraine. Then others jump on the bandwagon and before you know it, there’s a whole new pseudo diagnosis being invented before your eyes to explain what we are dealing with. And so here’s what I think are the main factors that stand in the way of people getting this migrainous vertigo condition under control. I have failed myself in most of these areas at one time or another. The important thing is to be AWARE and to keep steering the ship to calmer waters and sunny skies.

So why do people fail to get well?

— Begin quote from ____

[size=110]1. They refuse to accept that they are migraineurs (migraine denial), refuse to believe that migraine disease can cause neurological problems at the scale we live with or they are misdiagnosed by an unenlightened health professional (told Meniere’s disease or uncompensated labyrinthitis for example).

  1. Number 1 then leads to people chasing red herrings or believing in chronic diseases that simply do not exist or explain what is happening. There are entire industries of dubious health practitioners that perpetuate this sort of poor thinking and so people waste untold amounts of time, money and energy. We’ve seen it here many times.

  2. Failure to identify migraine triggers or not avoiding triggers even when they have been identified (e.g coffee). Triggers can be nearly anything and I have found that sometimes I have thought it impossible that X could be a trigger only to find that it is.

  3. Failure to lead a migraine lifestyle (e.g. going to bed and getting up at the same time every day, drinking enough water).

  4. Inadequate or poorly trialled migraine medicines or a fear of medicines and so no trial ever occurs. This is a big one I have come to realise. Even smart people I know with a very good handle on migrainous vertigo will either flat out fear medicines completely or have some other belief system in place that kills their chances of ever being free of this illness.

  5. Lack of support from family, partners, health professionals in executing the above.[/size]

— End quote

I’d be interested in hearing what you guys think. I don’t think there’s a single person I have come across who was not well and who didn’t fall into one or more of these categories. I’m not trying to point the finger or make anyone feel bad about this because it just happens. We’re human. For example, I missed an important trigger for 9 years! I was in denial for the first 2 years. I have definitely missed triggers and dabble in them when I think I can get away with it (coffee being my weakness). I could probably say that I have not adequately trialled all medicines properly either because work got in the way; however, I’m going to try propranolol again. Nabeel is a great example of a person who just kept at Topamax despite it kicking his ass only to have success on trial number three. Inspiring to say the least.

Scott

2

Hi Scott,
Good points I think. I am actually pretty convinced that my chronic on and off dizziness for the last 10 years or so is a migraine problem. It wasn’t that I was against he idea of it being a migraine, it was just hard to believe because at a certain point you wonder what doctor is right. I got every diagnosis in the book, it’s hard to assume that this one is right. But with my research on it, this seems to be the most logical answer. something that finally fits, when all the other diagnoses didn’t seem completely right. I actually feel like a diagnosis of migraine gives me hope. I have some control over this. With diet, magnesium, B vitamins and lifestyle changes I hope to completely get a grip on this problem. I have had this relapse for about 1 year now. Since this started things are overall better, but it still comes and goes. I have to admit that the one thing I am scared to do is take meds. Maybe I’ll get to the point that I feel like I should try something. I just hold out hope that since this has always resolved for long periods of time over the last 10 years that this time it will improve like that as well.

Good info though, and I am open to the idea of medication if I need it. I just have to get the courage to try them.
Joy

3

Thanks Joy – I too was slow to take up medicines not because of fear per se but because I had this thing about people who took antidepressants. I thought it was a sign of weakness and never thought I’d have to join that club in a million years. I was always a happy and confident person and thought people on ADs were weak people who couldn’t get their shit together. Yeah, dumb I know. Why on earth did I need an antidepressant? And so I stupidly white-knuckled the Big Bang for 4 months. Big mistake. I only made my recovery that much harder and longer.

S

4

Hi Scott,
I can see where you are coming from. My biggest concern is the side effects. I’ve always been a baby when it comes to meds. i always worry about side effects…

5

“So why do people fail to get well?”

-Support systems make it hard to follow a plan few people understand. I have this illness and hardly understand it, imagine what others must be thinking of us nearly always having something wrong.

-Having other illnesses that muddy the water.

-The symptoms of MAV/VM are very similar to so many other illnesses and since we have suffered for many years we are desperate for almost anything that may give us the hope for relief. It may sound crazy, but when I had my mri last year I was disappointed that they didn’t find anything.

-This causes other illnesses. I am in a vicious cycle of pain, inactivity, no sleep, depession, gaining weight. Then not being able to do anything because my muscles are completely messed up.
(Btw, I start physical therapy Friday; wish me luck).

6

Lucille – support! You’re right. Added. :slight_smile:

— Begin quote from ____

The symptoms of MAV/VM are very similar to so many other illnesses

— End quote

In general, I don’t agree with this. It’s become a problem for many on FB. The exception would be Meniere’s disease in its early stages where differentiation is tough if not impossible. Or even harder when Meniere’s and migraine are both present. And while there is no question that symptoms of migrainous vertigo overlaps with other illnesses such as BPPV or vestibular neuritis and even MS, at the end of the day, a neurologist should be able to separate the wheat from the chaff. One of the hallmarks of vestibualr migraine are the variances in testing results. It may be composed of central and peripheral components that change frequently. Taken together a dx should not be rocket science. Dr Terry Fife agrees. There are really clear indicators that flag migraine most of the time.

7

Great post Scott. I didn’t want to take meds either as I was proud of the fact that I didn’t take anything for most of my life,not even aspirin. Side effects I thought about, but at the point where my life as I knew it was rapidly going down hill I decided to try any and everything.

If you have side effects I doubt that they would be any worse than what you are going through with VM and when you stop the meds the side effects should stop as well. Unless your big fear is that the side effects are going to turn you into a serial killer there is no reason to fear them and I don’t think anyone has gone as far as my silly example when talking of side effects.

Scott there is some interesting new research that is being done with Menieres and Migraine. I will post a link to this on another thread.

8

— Begin quote from “James”

If you have side effects I doubt that they would be any worse than what you are going through with VM.

— End quote

Completely agree. I am completely dumbfounded by people who have the ability to put up with being ravaged every single day by the beast that is vestibular migraine but blaze a trail in the opposite direction when offered a medicine that can kill the beast dead! :shock:

9

— Begin quote from “scott”

Lucille – support! You’re right. Added. :slight_smile:

— Begin quote from ____

The symptoms of MAV/VM are very similar to so many other illnesses

— End quote

In general, I don’t agree with this. It’s become a problem for many on FB. The exception would be Meniere’s disease in its early stages where differentiation is tough if not impossible. Or even harder when Meniere’s and migraine are both present. And while there is no question that symptoms of migrainous vertigo overlaps with other illnesses such as BPPV or vestibular neuritis and even MS, at the end of the day, a neurologist should be able to separate the wheat from the chaff. One of the hallmarks of vestibualr migraine are the variances in testing results. It may be composed of central and peripheral components that change frequently. Taken together a dx should not be rocket science. Dr Terry Fife agrees. There are really clear indicators that flag migraine most of the time.

— End quote

I agree with you 100%. You touched on something that is very sensitive for me right now. If you’ve had a chance to see my small back story you will see I have had a history of misdiagnoses from doctors on some pretty serious illnesses. Even with a diagnoses I have doctors trying to test me for other rare things. I wish there was a clear way to reward the good doctors and a reasonable way to confront the not so great ones. The goal would be to make the doctors better.

Teresa AKA Lucille2

10

Scott,
I have been doing a lot of reading on here, and trying to educate myself as much as I can as right now I have a window of lower pain level in my head. I don’t often get these windows and if i am going to get any reading in i have to take advantage while I can.

I was reading something you wrote about antidepressants and you realizing you are not weak if you take them. I thought to myself “of course it isn’t about weakness it is about the brain at least this is something that you can change why wouldn’t you”. Then it struck me like a big AHA moment. I guess it all comes down to an evolution of acceptance, and personal respectability. I thought about that thread a lot last night before I went to sleep, and it really had a profound effect on me. If I am willing to believe that there are things hard wired into the brain then why can’t I believe in migraine and migraine dizziness and the effects of this? It didn’t make sense to believe in some of it and not believe in it all. Then I started to think about all those doctor interviews you posted (which I read last night). One of the questions had to do with IBS. Those dr’s answered yes to that question. Yes, IBS is linked to migraine. It blew my mind.
I slept better last night than I have in a long time and I think that was because I finally realized I don’t want/need to keep looking for what else might be wrong with me and I am not going to go for any more tests. I think I have been through enough this year and one of the best dr’s in the country found that I have MAV/Chronic Migraine.
Not only that, how am I going to get well if I don’t fully commit?
I feel liberated!!!

Teresa AKA Lucille2

11

Good topic.

Personally, over on Facebook, I really have got no time for anyone who seems to just sit on their arse waiting for a cure to fall into their lap.

And there seem to be quite a few people who have this expectation.

I have had this battle on my hands for 2.5 years now. I know how much it can make you tired, make you depressed and not want to fight. But you have to push on with things. The alternative is for time to fly by and you’ve got nowhere.

You have to push doctors, you have to push your GP for a referral, you have to do your own research, find the specialist you want to see. It’s not that hard- you’re online already so you know the names.

I also have to admit, I find it a little hard to empathise with people who don’t want to take drugs AT ALL. You are statistically unlikely to get better from lifestyle changes alone if you have had this thing for a while. Drugs don’t have to be forever. But the drugs work. You’re fighting a tough neurological condition at the end of the day. If you want to get better, you’re going to need to trust medical advice. I also struggle to have empathy for anyone who does not stick with a drug through side effects. What can be worse than being so dizzy that you’re crawling on your hands and knees around the house? Nothing. So a month of symptoms spiking is surely worth it? I know it’s scary, but there are so many people online who can reassure that a side effect is normal.

MAV requires patience. Lets the drugs and the lfiestyle changes take time to work and do their thing. But you also have to push your doctors. Push yourself.

Use this forum to talk to others in the same boat and to keep positive.

I do not know where I’d be without Lizzie, Rob, Richy, Scott and Katie. They have become friends to me and it’s great to know they are available to chat to, ask questions to, and sympathise with each other and most importantly, support and spur each other on.

Sometimes everyone needs a bit of tough love. Me included.

12

This is really interesting! I got on the meds fairly quickly. Was diagnosed about 3 months in and went straight onto beta blockers cut caffeine out etc. I lost my dizziness after about 4 months but I my headache still remains :frowning:

13

Hi Scott,

I just wanted to respond to your post that you made.

"So why do people fail to get well?

1. They refuse to accept that they are migraineurs (migraine denial), refuse to believe that migraine disease can cause neurological problems at the scale we live with or they are misdiagnosed by an unenlightened health professional (told Meniere's disease or uncompensated labyrinthitis for example)."

In response to this, yes I believe I have MAV and no I don’t argue with the diagnosis.

"2. Number 1 then leads to people chasing red herrings or believing in chronic diseases that simply do not exist or explain what is happening. There are entire industries of dubious health practitioners that perpetuate this sort of poor thinking and so people waste untold amounts of time, money and energy. We've seen it here many times."

After doing 6 weeks of VRT in the summer of 2012, my balance was completely destroyed and never recovered. As my dr. said this isn’t normal, I pursued lyme treatment, which made no difference to my balance. But I pursued other treatment bc my mav treatment crippled me and I was desperate for answers and no one would admit that vrt was the cause of my downfall. No one wanted to be held responsible for what happened so I had to look elsewhere for answers.

"3. Failure to identify migraine triggers or not avoiding triggers even when they have been identified (e.g coffee). Triggers can be nearly anything and I have found that sometimes I have thought it impossible that X could be a trigger only to find that it is."

I did the migraine diet strictly for 2 months and it made zero difference. The only trigger I have is alcohol so I don’t drink. Nothing else makes a difference.

"4. Failure to lead a migraine lifestyle (e.g. going to bed and getting up at the same time every day, drinking enough water)."

I have tried keeping a sleep schedule and it makes no difference to my mav. The amount of sleep i get also makes no difference.

"5. Inadequate or poorly trialled migraine medicines or a fear of medicines and so no trial ever occurs. This is a big one I have come to realise. Even smart people I know with a very good handle on migrainous vertigo will either flat out fear medicines completely or have some other belief system in place that kills their chances of ever being free of this illness."

I have been trialing medications nonstop for over 3 years now. I haven’t been able to get past the starting dose on most bc it will make my balance so bad I can barely take care of myself. But I do try to stick out each med for a month if I can take it. If you live alone/work/etc you have to be able to still function and take care of yourself. Between vrt, topamax, and savella, I can barely walk with a walker. If I lose any more balance I wont be able to walk. So at a certain point you cant try any more meds bc there is no room to go down. I have tried so f*ing hard and tried countless meds and gained 30 lbs from them just to be made worse and emotionally steamrolled.

"6. Lack of support from family, partners, health professionals in executing the above."

I have had great drs. and health insurance and family (well not now so much) and have had access to all the meds and it has just made things worse.

“I don’t think there’s a single person I have come across who was not well and who didn’t fall into one or more of these categories.”

Well, you have come across me now. I have done everything right and I’m completely disabled now thanks to my treatment. Yes nortriptyline has helped some of my dizziness and so I still take it, but as far as functioning and mobility its almost all gone. The treatment just doesnt work for some people, and for others they may find a med that works but they cant tolerate the side effects. The first time I tried nortriptyline and lyrica they worked better for me but I couldnt handle the side effects and so I had to stop them. When I tried them a second time I got different side effects but they didnt work as well.

Nortriptyline made my feet feel like they were constantly asleep for the 6 weeks I was on it, I couldn’t even feel the ground so I couldn’t continue taking it. Lyrica put me in a coma like state and my dr. didnt tell me to stay at the same dose until the sedation went away so i kept going up and my body never got used to it so i had to stop it.

“however, I’m going to try propranolol again.”- are you having problems with the paxil? can u raise the dose at all? what other meds have u tried?

“Nabeel is a great example of a person who just kept at Topamax despite it kicking his ass only to have success on trial number three. Inspiring to say the least.”

Nabeel was great for sticking with it but I mean he was lucky that it eventually did work for him. I tried topamax for 1 month couldnt get past 25 mg bc made balance and dizzy worse and after stopping it my symptoms never went back to my baseline and i was forced to get a walker at that point. I didn’t do anything wrong. I took the same drug and look what happened to me. So now you know someone who did everything right and who not only didn’t get well, but they got worse. Honestly there is an element of blame in your post that really bothers me. There’s nothing else I could have done its not my fault.

14

Great post.

I had a much harder time accepting my initial diagnosis of chronic VN or reoccurring VN after suffering for two yrs straight with 24/7 dizziness. Finding a Dr that knew what he/she was talking about became my focus. Hearing that I had MAV was a relief because then I knew I could DO something about it. Acceptance was easy.

Taking medication is simple. Open mouth, swallow pill. The side effects of course are not. For me personally nothing compared to the difficulty of living day to day with MAV. I once told my DR that I would take the medication even if it turned my arms blue as long as I started to feel better. It took a couple meds and some dosage adjustments but it WORKED. I feel lucky. I am grateful. If this med fails my neuro has a back up plan in place. I personally would and WILL try them all for as long as possible to see what works.

Every setback I have had since then has been directly tied to my own false belief that I can eat and drink what I want, stay up too late, and completely ignore my triggers. Pile those on and I deserve what I get. :smiley: I still get horrible migraines that bring on dizziness. Why? I have MAV. It reminds me that I have limits and I have to respect that.

If I could have one Christmas wish, it would be that one medication, side effect free, worked for everyone. MAV would be a distant memory. It makes me sad to read about others struggles. I remember my own and how the simplest of tasks became so insurmountable. I wish everyone better days.

Tracy

15

tracy what do u take now? how long have u been on it? did u have unsteadiness walking and did it help with that? what else have u tried in the past?

16

I’m glad Sarahd submitted her reply. We have such a tendency to hunt for explanations that will give us control, and, especially when something bad is happening, to find someone to blame, even if it needs to be ourselves. It’s part of the wiring that inclines us to develop heuristics, I seem to recall.

While I certainly don’t dismiss the value of your list, Scott, we need this counter-perspective. I’ve a dear friend of very long standing who is going in to hospital in late January to have his pancreas sliced away a bit of a time as they look for non-cancerous tissue. The gent lives a pretty healthy lifestyle, but with this suddenly on his plate he is eliminating all added sugar from his foods, dosing himself with ayurvedic herbs and spices, the whole schmeer. Has he suddenly started believing in the necessity of this? I doubt it. But he so very much wants to regain a sense of control.

The potential problem with conclusive statements as to why people aren’t well is that while on the one hand it can be valuably empowering, on the other it can disserve by blaming the victim!

17

I don’t know a huge amount about this stuff, I’m still learning. But I’d like to suggest that another possible reason that people don’t recover may be down to unresolved chronic stress in their lives.

Stress is a well known migraine trigger, and I’ve witnessed myself how powerfully it can trigger symptoms.

I believe that stress management is a huge part of dealing with MAV, and that as part of learning to live with a migraine brain we need to look closely at our daily stress levels.

18

Thank you for your reply David, I appreciate it. I should say that some of my frustration has nothing to do with scott or this board- at this point my own family and psychiatrist blame me for not getting better and for getting way worse. It is hard enough to live like this but to have people try to blame me as if I have some sort of control over this is too much to handle. So reading this post for me reinforced what a “failure” I am because I got so much worse and that it must be “my fault.” Scott I think your explanation was too simplistic- if it were that easy to get this under control I think there would be far fewer people on this board. A good deal of this is luck- luck that you will find a med that works for a long time well and luck that you can tolerate the side effects of that med. Its like winning the lottery if you can get this under control long term enough to function well again.

19

I would like to second that. I totally agree that chronic stress and in females constant hormone fluctuations can make controlling symptoms nigh on impossible even with the right medication.

20

Hi Scott:
I very much agree with you. The first year I had MAV, I was in denial and kept researching other illnesses I may have. I have now accepted my diagnosis and moved on to bettering my condition with diet, exercise, and medication. I have trailed all medication for however long it was recommended by my doctor. I am now on my 6th trial of medication and hoping it will work. I think what it comes down to is patience and understanding that just because multiple medications have failed to work does not mean others will not work. We all must keep trying to get our conditions under control.

Katie