The Ten Commandments

1

Hi guys,

It seems the 10 commandments post has been pissing some people off on the interwebs – most notably it shows its face on, well, Facebook. There’s a few over there who think the post here is arrogant, that there is something not right with being told to accept your migraine dx when you have received it from a neurologist.

My personal opinion is that it is right on the mark. Why? We know how hard it is for people to accept that they are a migraineur in some instances, so much so that there is literature on it. It took me about 2-3 years to accept it while I wasted my time thinking I was “decompensated” post VN. I know many of you here have been down the same road. Then there are the ones who think they have had labyrinthitis for 65 years (impossible of course). There’s a website devoted to this! Others think they have Meniere’s. Not their fault but misdiagnosed. Now it’s all Lyme disease. Next year it might be chronic syphillis.

The thing is, of course it is possible to be misdiagnosed with VM. It’s possible to be misdiagnosed with ANY disease. But we know the migraine stats. The affected population, especially among females is VERY HIGH. If you are dizzy and have had other peripheral and central causes ruled out, you are almost certainly a migraineur and that is the root cause. We also know that some people have very nasty cases of migraine that does not respond well to either lifestyle intervention or meds and sometimes not at all. Indeed Baloh says that if a chronic migraineur sees a reduction in their symptoms of 50% with treatment that that is a very good outcome. Unacceptable to most but an unfortunate fact at this point in time.

So you can see how difficult it can be for people to accept the above, especially with an incurable disease like migraine. Unfortunately, it also makes for highly fertile ground for woo and pseudo science to grow like a weed. It opens the door to junk science and absurd thinking, even some inventing a new diagnosis! I wouldn’t want to accept being dizzy either and I never have. And sure, if things aren’t improving I think we have to keep looking even if it’s for the rests of our lives just in case we are not some intractable case.

If you are a confirmed migraineur I think the first priority is to be certain you’ve done everything you know and with the help of a specialist to remove triggers. This is so important. This includes ruling out other illnesses which could be winding up your migraine brain – like Lyme, Rocky Mountain spotted fever, chicken pox, flu, celiac disease. common cold, whatever. For example, had you asked me this time last year when I felt really crappy again if I had sorted out all of my triggers I would have said a definite YES. I was back onto med trials again. I was totally incorrect! It turns out I had a very bad painkiller rebound thing going on PLUS a nasty trigger point on the upper left side of my neck that I had missed for years triggering all sorts of nasty stuff. Unbelievable to me now. Now that I’ve eliminated painkillers (supported by Silver) and fixed that trigger point, I’m a different person hanging out in the 90% range most of the time if I don’t eat junk or do something stupid.

So, what do you guys think? I’d love to hear your points of view.

Thanks,
Scott

2

I am definitely frustrated about the labyrinthitis site. There are lots of people on there who think they have not yet compensated for labyrinthitis. I know some people have a vestibular loss which has been proven on caloric tests etc so there could be a period of compensation. I read in a book by Prof Luxon that it can take up to 2 years or so. I also read that for people with severe vestibular loss, especially on both sides then symptoms may be chronic. However there are a heck of a lot of people with normal test results who still think they just have labs. I have tried telling people there my story a few times but I am not sure how many people it has got through to.

I really hope info about VM is spreading on the internet and also amongst doctors. I wrote to my last doctors’ surgery with some info about VM because when I had been seeking a diagnosis at the beginning their suggestions were in this order: anxiety, unknown virus, labyrinthitis, BPPV. Then when I saw the specialists it was: BPPV, feet problem, possible vestibular neuritis. Nobody ever mentioned migraine to me.

— Begin quote from “scott”

Indeed Baloh says that if a chronic migraineur sees a reduction in their symptoms of 50% with treatment that that is a very good outcome. Unacceptable to most but an unfortunate fact at this point in time.

— End quote

I didn’t realise this was the case, I thought some of the experts were saying the right meds should control symptoms most of the time. It does probably explain why people still get symptoms and often don’t feel cured even when meds are helping.

3

Jem – I think it’s probably quite rare for someone not to compensate in a reasonable amount of time from labs or VN. Certainly there should be progression out of the two and not the sort of major setbacks we typically see in VM.

I know a guy named Subs who had a dose of BPPV. He was not getting well and was continuously dizzy for many months. When he discovered his glasses prescription was not correct and was given the right VRT exercises to do he got well very fast. He did not have the other symptoms we know that comes with VM such as anxiety, depression, sound and light sensitivity or any discernible triggers. It was obvious really that it was unlikely he was dealing with migraine. The signs were pretty clear.

Yeah the 50% thing is difficult to swallow but that’s what Baloh says and he’s been studying this for decades and has treated hundreds of patients.

4

Hi,

I just wanted to say that reading The ten commandments was lifesaving for me. It is the single most useful piece of information and advice I have had in three years of looking for answers. I have read it several times and referred others to it. I wouldn’t take any notice of any backlash on FB or wherever, as there are so many grateful people here who have been helped enormously by every aspect of this forum. Every effort is made to make sure that info is accurate and up to date, but when there are so many grey areas where the most eminent specialists can disagree, there are bound to be differences of opinion. These should be accepted with good grace because god, DON’T WE HAVE ENOUGH OF A BATTLE ON OUR HANDS WITHOUT SNIPING AND QUIBBLING BETWEEN OURSELVES?

5

Totally agree with Nubs, this site and the ten commandments were a lifesaver for me too!! I was gobsmacked at how all of it sounded just like me and after 15 years of being treated for menieres disease and being given operations on a normal ear, it was a great to read about symptoms I have had for years but discounted by endless ENT consultants. The information on this site made me realise that the most recent diagnosis of uncompensated VM or labyrinthitis (15 years worth ha!!) was total crap and just a fob off to get rid of me.

I laughed when reading the ten commandments that said accept your diagnosis. I spent weeks not believing it and screamed like a child at the doctor for suggesting it although thankful now.

Ignore the ignorant people on the other site Scott, if they don’t want to believe then let them!!! Its their loss,dizziness and frustration.

Angela

6

— Begin quote from “scott”

Indeed Baloh says that if a chronic migraineur sees a reduction in their symptoms of 50% with treatment that that is a very good outcome. Unacceptable to most but an unfortunate fact at this point in time.

— End quote

This quote has been taken out on context. He said if medication reduces your symptoms by 50% then stay with it and let the lifestyle changes knock out the rest

Jem / Scott - Dr Baloh also said that symptoms will likely lessen over time. I just wanted to put a positive spin on this :smiley:

I don’t agree with this at all

— Begin quote from ____

in between attacks most migraine patients are normal.

— End quote

He also says that diet is a minor factor

7

I love those 10 commandments personally.
I am a bit of a hyperchondraic and Google is my worst enemy (even before i had MAV) and i find i reguarly need to re-read those 10 to keep my mind on track and keep myself positive that ‘all’ i have is migraine.
Some people will find fault in anything but we should not have to pander to them.
I like to see facts written down in a easy to understand way on an informative site, it keeps me going!

8

Hi Hillsta – Baloh made those comments in an interview. Have you seen him? Interested in the remarks you got.

Here’s Baloh’s full comments:

— Begin quote from ____

– There are several genes involved in some with more rare or severe syndromes. Sometimes medications can cause symptoms to totally disappear and sometimes they vanish spontaneously. Baloh is convinced the medications make a difference but be clear that none of these meds are “cures”. All we know is that they cut down on frequency and severity by 50% on average when they are effective. There is no evidence that any medication “resets” the brain. When you go off the meds, sometimes the symptoms don’t come back which is yet another mystery.

– the question of whether multiple drugs cuts down further on frequency is really something we don’t know. There’s no evidence in prescribing multi-pharmacy for migraine. Baloh is hesitant to do so because you start to get into issues of interactions. Baloh would like to see evidence that even one drug works for MAV. Before considering more than one he would like to see just one working over a period of time. If Baloh had the answers to this right now, he’d be the only one because nobody else does. People can certainly try things (multi-pharm) but be careful because there can potentially be short term and long term side effects. Again, having a 50% reduction in symptoms is a very good outcome because there will also be spontaneous remissions as well. Baloh is cautious with multi-pharmacy because he has little experience with prescribing this way nor has he seen data to support it. He certainly does see increased side effects.

— End quote

Everything he said can be found in this sticky thread:

http://mvertigo.cloudapp.net/t/faqs-answered-by-neurologists/1223

Thanks guys for the input. I agree. I’m not going to pander to a few kooks on Facebook but just wanted to double check. :smiley:

S

9

Scott the remarks i quoted are from the same interview. No i have not seen him

10

Scott,

I seriously wouldn’t worry about it. There are people who have a different view of migraine or of the cause of their symptoms or of the way to treat those symptoms. I don’t know where on Facebook you are but my guess is it’s an open forum? If so people are obviously free to express those views, as they should be. I think the general consensus on mvertigo is that the 10 Commandments are a pretty sound set of principles to tackle migraine. Mvertigo is an evidence based forum and even vigorous discussions are generally underpinned by evidence and remain civil. I wouldn’t worry too much about what happens on Facebook or elsewhere.

Vic

11

— Begin quote from ____

  1. WHEN YOU GET YOUR MAV DIAGNOSIS, ACCEPT IT. Once you have had the proper testing done to rule out other causes of vertigo and have a CORRECT diagnosis (which will likely require a migraine specialist), do NOT go from doctor to doctor trying to find another cause for your vertigo. If your MRI, ENG and other vestibular tests come back normal and you are told MAV then treat MAV (if your caloric shows some weakness of 30% or less, ignore it. A caloric weakness greater than 30% can still be due to migraine). You will drive yourself insane second guessing, spending countless hours on the internet, going to numerous doctors. DON’T DO IT!

— End quote

See now, I’m living with this one!! And I come here to get the help of others to remember to live this one when I fall into the doubt and fear that comes with this crazy stupid world of migraine. Because the symptoms are so scarey and diverse and diffuse and because they affect the one part of us that affects every part of WHO WE ARE (our brain). Every new symptom or every time an old symptom seems worse or different we find ourselves frightened and in need of reassurance–and so, we could go to 20 new doctors who will look at all of our tests and say the same things as the 20 previous doctors, OR we can go to the doctor we’ve learned to trust and keep asking the same questions and just ask him/her to reassure us–and then come here for the same.

The ten commandments are good ones—

You know–there are stages of grief too…and those who are in the stage called denial rarely agree that the stages are real, or that they are in denial!!! :wink: So, some of the pushback COULD be from those who are just not READY to accept their diagnosis—some people never will. And, like me, even when they do, sometimes they will STILL question it–because we want a CURE. We want to be what we WERE, and what we ARE makes no sense in the scheme of who we were.

Human nature–we are annoying little beasts :roll:

12

Scott - I appreciate you listing Lyme as something to rule out. I am also glad that here we have had respectful conversations about this topic.

Just to remind others, if ever want to read two sides to Lyme controversy (Scott and I share different views) there are a few threads about Lyme under the “Other Illnesses and Conditions” section. My entire story is written under “Update: Lyme Diagnosis after over 5 years of suffering” I’m learning more every day and am always happy to answer questions.Scott and I already stated our thoughts and glad it’s all there so others can make their own informed decision. I know we both worked really hard on writing what we did.

I do want to add that there is a book called, “Cure Unknown,” by Pamela Weintraub. The downside is its a long read, but it thoroughly explains the history to the Lyme controversy, and includes great deal on diagnosis and testing. Chapter 17 in particular deals a lot with testing. I also liked it as there are 40+ pages of references. It is written in an intelligent yet very comprehensible manner, as this topic can be so overwhelming.

Lastly, I was trying to explain previously that there can be triggers (e.g., hormones, injuries) to Lyme symptoms presenting
After exposure. I found an article than explains this way better than I did. thehumansideoflyme.net/viewa … 14ac692f7c

13

Hi Lisa,

Can I ask you some questions? You’ve obviously become a huge Lyme advocate and that’s understandable given the recent positive testing coupled with years of feeling very ill. I also realise that given the level of illness you’ve had, showing a positive Lyme test must seem like some serious light at the end of a dark tunnel and I cam imagine you have invested everything you’ve got into that hope to be free of this dizzy nightmare.

However, you know I’m a skeptic about everything until proven otherwise especially with something loaded with controversy like chronic Lyme and dizziness. I’m in know way trying to make you feel bad or without hope in asking this but I’m wanting to know how realistic this all really is in your opinion.

  1. is it possible that you could have registered a false positive?
  2. In the unfortunate event that things don’t improve with your AB treatment will you continue to believe it’s all Lyme disease still or will you question the dx?

Thanks

14

Sure. I do not question false positives, as I took FIVE tests and they all came back with Positive Lyme Specific Bands. Some of those tests were Igenex, and others from Stony Brook Laboratory.

I am very secure in this diagnosis. I have both Lyme and Babesia (which I also tested positive for; however, false negatives are very common with coinfections).

Feeling confident in this diagnosis was a process to be honest. My husband and I spent about 1 month straight reading all we could find that was anti-Lyme. My husband even spoke to doctors who aren’t proponents of Lyme. We wanted to explore the entire story, as Lyme is NOT something I wanted to have. But, after we thoroughly researched for several months this diagnosis for myself became undeniable.

Also have to keep in mind that Lyme isn’t something that occurs in small proportion of population. as I said before and I stand by it - It is a global epidemic. I know your thoughts and I respect them. If decide to learn more about Lyme in Australia, I found this source. lymedisease.org.au/

I’m going to try to concentrate on treatment now, but, of course, I am always here for questions, etc. And, Scott, if you do decide to read, Cure Unknown, I would love to hear your thoughts. It explains things very well, and if nothing else the chapter on testing is very informative and you would even understand better than I do.

As far as your second question, I cannot answer that now. I am taking things moment to moment. After 6 years of this degree of disability it is not easy to picture myself well again to be completely honest. I am scared to death of not getting better, of course! But, I am going to fight like hell for my children, my husband, my parents, and myself. I am trying not to look back at the 6 years that I was misdiagnosed and try as best as I could to stay in the moment right now and fight for my life.

I am truly so thankful that we can have these conversations. I appreciate you letting me speak a little more about Lyme here.

15

Thanks Lisa – well, five tests from different labs is certainly compelling.

While your dx of Lyme sounds quite accurate, have you considered that you were not misdiagnosed per se but that migraine AND Lyme disease are at play? This is where we differ in respect to where you are at (the whole chronic Lyme disease thing is another issue). I’m not saying this as some die-hard migraine fanatic but because you and I both know you are a migraineur. You have instead thought about this as some “symptom complex”. I think this is not right. Don’t throw the baby out with the bathwater. Migraine and Lyme are two discrete problems. I personally don’t believe – based on the science and evidence – that Lyme disease alone causes debilitating dizziness; at least if it does, it’s very rare.

What makes more sense to me in your case is Lyme disease ratcheting up your migraine brain to the point of daily life being very unpleasant with both giving you grief. I could obviously be incorrect but in my experience, once a migraineur, always a migraineur. Other diseases or physiological problems always complicate migraine.

16

I understand exactly what you are saying, but I respectively disagree.

I’ve had long conversations with my husband about this and ponder it ALL the time. Headaches and dizziness (in varying degrees of severity) are two very common symptoms (not rare at all) of Lyme and Babesia. What is VERY common is people with these symptoms being misdiagnosed with VM, Labyrinthitis , Meniere’s, Anxiety, etc.

I continue to believe that chronic Vestibular Migraine is a name given to a symptom complex. Perhaps, episodic Vestibular Migraines (without multi-systemic symptoms) might have only migraine at it’s origin but honestly I am beginning to even question that. When you truly examine people diagnosed with VM, so many have multi-systemic symptoms that go way beyond a migraine explanation. Again, this is my opinion, and I respect yours.

If when I get well I return to having 1 migraine per year, I will say I am having a migraine. But, I will never refer to my 24/7 rocking for almost 6 years, brain zaps, bone-crushing fatigue, nighttime blurriness, flu like symptoms, spinning in my head, etc., as an almost 6-year, nonstop, migraine variant.

When you read that book, let me know :slight_smile: I would seriously love to talk about your impressions of all.

17

Thanks Scott! Was there a certain way you found out your triggers? Also howd you fix that nasty trigger point on the upper left side of my neck?

18

Hello everyone,

I read part of the post but not all of it. Can someone send or attach the Ten Commandments. I am interested to read what they are. I could rise any advice or help as this can be very frustrating and saddening.

19

Here they are:
https://www.mvertigo.org/t/the-ten-commandments-of-vm/4643