MM
There are quite a few areas in UK which have high prevalence of Lyme. Hikers/campers etc. are usually pretty aware but the ‘average’ day tripper just going for a walk through the fields or woods may not have even heard of it. So, if no evidence of a bite & no anti-biotic taken then there could be thousands of people with Lyme who are suffering & undiagnosed! Some of my UK family live in these areas (Norfolk, Yorks & New Forest) & are very aware of Lyme & have experienced tic bites.
Barb
— Begin quote from “scott”
The underlying cause of a true case of migraine associated vertigo (MAV) or vestibular migraine (VM) as it’s also called – is, as the name suggests, migraine disease.
— End quote
Thanks for the unequivocal clarification Scott. For the first time in my life, as I read this thread, I’d wondered if I’d missed something and might be dealing with something other than what I had originally thought, ie migraine. Having spent a few days thinking it over and reassessing my symptoms and history, there is now no doubt in my mind that it is a migraine variant I have, MAV, and not something else. It must be far more difficult though for someone whose symptoms and history do not point as clearly as mine do to migraine.
That said, I’ve appreciated the discussion on Lyme, particularly Lisa’s input, I’ve learnt a lot and yes, it did create a bit of a wobble in me, wondering if it applied to me, especially as I live near Dartmoor, where ticks abound (the dog’s had a few) but at the end of the day I’d rather have known about Lyme than not.
I think we have to keep an open mind, gather the facts, steer through what can be a panic stage (does this apply to me?) and then rationally make an appropriate individual choice as to what to do.
Brenda
— Begin quote from “Brenda”
I think we have to keep an open mind, gather the facts, steer through what can be a panic stage (does this apply to me?) and then rationally make an appropriate individual choice as to what to do.
— End quote
I like how you said that. 
I have to agree with Lisa I think a lot of us have an underlying cause for being dizzy. I’m at four years with this crap and the longer it on the more I question things do i think I’m having a migraine 24/7 possibly but something is causing it I’ve been chronically dizzy for three years. I’m afraid MAV has become a trendy diagnosis for some doctors to get us out of the door but if you have been dizzy 3 years look for other things every thing has a cause chronic dizziness could be MAV I’m opened minded but somethings caused it. I’m still getting attacks/relapses whilst on meds I would love more proper in depth testing money talks in these situations if i had it I would be private by now but even then you can be fobbed off
I do remember a guy who had Lyme with all our symptoms he was on treatment for a year but got better people used to moan at him but I truly feel he was trying to help.
MM you sound angry towards Lisa and where there is anger there is always fear too just because Lisa has Lyme and is telling us there MAY be an underlying cause it doesn’t necessarily apply to you.
We have to be advocates for our own health doctors don’t always get it right we need to know if something might 'be causing this other than migraine
Good luck Lisa I never thought you had a straight case of MAV from what you described on here and I’m glad you finally have answers x
I would like to make it very clear Lisa, that I don’t think you are in any way wrong at all, to come here and tell everyone about your experience and diagnosis with Lyme. I think it is incredibly useful and interesting.
However, it’s important to report facts and keep context when talking about cases of misdiagnosis as I find it is quite easy for us all to get whipped up into a frenzy worrying about Lyme, worrying about CSF leaks, worrying about other conditions. Yes- we could be suffering from these illnesses and have misdiagnosis of MAV, but I am not entirely sure it is entirely efficient or sensible for everyone to suddenly start off heading in those directions.
Exactly as Brenda says, I think it’s important to stress that everyone should think calmly and rationally about these diagnosis in relation to themselves, that is all. Perhaps my words got minced through my own brain fog. If so, I am very sorry, I did not mean to offend you.
— Begin quote from ____
I think we have to keep an open mind, gather the facts, steer through what can be a panic stage (does this apply to me?) and then rationally make an appropriate individual choice as to what to do.
— End quote
Blondie you are wrong. I am not angry. However, I am perhaps a little angst ridden. As sufferers of MAV, we are already desperate and we are already a lot of us, low emotionally. If someone comes along and says ‘Hey, you could have this instead…’ we could pin our hopes on something else, and hope for a different diagnosis and a cure that way. But I’m not sure it’s realistic. The odds are surely low are they not? Or are they ? I don’t know- I’m so confused now over wether MAV is common or not, whether Lyme is common or not…
It’s also expensive.
I have considered getting tested for Lyme myself, but I found the costs privately would be £1000. I don’t have the cashflow to afford to do it even if I can claim the money back. And I’m not sure, emotionally right now, I could handle waiting 4 weeks for a test to come back.
People here now have to think about whether they want to try to find a grand somewhere, to pay to find out if they have Lyme. And even then, we know the results can be interpreted in many different ways. It is contraversial. I am just not sure what to think of it to be honest. In some cases, like Lizzie’s where she’s been in an epidemic area and her results show positive across 7 bands, it was clearly worth it- but it’s a difficult choice to have to make for others.
Here’s a point for discussion;
If MAV is a diagnosis based on clinical observation and exclusion… why don’t we go through the battery of tests first e.g Lyme, CSF leaks, etc, … and THEN conclude it’s MAV? Instead, docs seem to tend to give an MRI to check for anything more sinister like brain tumour, and when that’s ruled out, we get the migraine diagnosis.
Why would they not exclude the possible causes that CAN be ruled out through testing first? It must be due to money surely. Testing costs money. In the UK at least, you’ve got no fricking hope in a million years of the NHS running any of those tests before hand. But if you’re going private/using insurance companies, I would have thought it was at least slightly easier. I just wonder why the doctors don’t decide to do the testing options first.
Maybe its because no GP is clued up enough to know what differing conditions could be causing these set of symptoms, or maybe it’s because a neurologist despairs of the dizzy patient and wants to give them pills to pop to get them out of his office asap?
Anyway, it was something I was thinking about last night as I lay in bed counting sheep.
With regard to underlying causes for the dizziness residing despite treatment- who knows. Sensibility tells me that is as Scott says, the clue in the title- migraine- and no other beast at work. But we all know that research appears to be lacking around migraine so it is perhaps possible?? I am not sure.
One more time, I did not mean to offend you Lisa- I simply wanted to say that I think it’s* important for people to remain calm in the face of other’s misdiagnosis’. *
— Begin quote from “missmoss83”
Why would they not exclude the possible causes that CAN be ruled out through testing first? It must be due to money surely. Testing costs money. In the UK at least, you’ve got no fricking hope in a million years of the NHS running any of those tests before hand. But if you’re going private/using insurance companies, I would have thought it was at least slightly easier. I just wonder why the doctors don’t decide to do the testing options first.
— End quote
I don’t think it’s the money per se. I think it’s because the odds of it being a CSF leak or Lyme disease (after a careful history is taken) for the large majority presenting these symptoms is far too low to have these as standard tests in the first instance. So in that regard, yeah, the cost is not justified and it wastes time and resources – and that’s why we have epidemiology to work out what is really going on out there. How prevalent something really is … What is the risk of it being X or Y etc.
I have got to get myself off this bloody Topamax- I am becoming dumber than the stack of peroxide I use to dye my hair.
Of course the reason drs don’t test for those things is because the odds are so low… smacks head
But… Now we are back to the argument of how common Chronic MAV is against other diseases…Argh, I think I give up- Topamax is not allowing my synapses to work in a suitable manner
I’m not sure if it’s money or physicians not having the time to invest in each case but I think that sometimes doctors slap a diagnosis on just to get us out if their hair. I was diagnosed with fibromyalgia (also a diagnosis of exclusion) many years ago. The doctor pushed a few pressure points and immediately diagnosed fibromyalgia, no other tests performed. More recently a doctor sent me home an article about fibromyalgia. One section of the article talked about how patients who were given a diagnosis were much less likely to make recurrent visits to the doctor as if that was the ultimate goal. It’s not that their symptoms were any better they just came to accept their symptoms as "as good as it gets ". At some point in all complicated chronic conditions you have to come to acceptance or you drive yourself crazy second guessing. But if you accept too soon than you might find yourself misdisgnosed or settling for less.
When I was first researching mav I came across an article on an ent website that listed all potential rule outs and suggested tests. This particular doctor states that in order to diagnose mav all known causes should be ruled out. I know other doctors make a primarily clinical diagnosis particularly if case seems cut and dry. Here is the link to this article.
Sorry. Here’s the link.
http://www.earcentergreensboro.com/medical-education/migraines/migraine_vertigo.php
Hope your treatment works. Trying to take the amoxicillin and prednisone is so difficult, I am in that stage right now for a Tick borne illness that is not Lyme. Mother has Lyme and lives very normally; dog has Lyme and is acting better after just days on medication, half the people I work with have Lyme and never got symptoms like I have.
Hang in there and hope you find relief.
SAL
Blondie - thank you so much. I can’t agree more. Yes, where there’s anger there is fear. I know first hand - I was terrified when the thought of Lyme arised (still am). Took me very long time to even get myself to read about it. I am still scared of road ahead, but so thankful for person that brought it up to me - even though I was upset at the time - that person very well could have saved my life as I’m NOT living now.
MM- no worries. I understand
Unfortunately, doctors are not properly educated on Lyme for many reasons - documentary “under our skin” explains. Before months ago, my husband (neurosurgeon) knew v little about Lyme. It took him awhile to open himself to learning about and hasn’t stopped since. He agrees its an epidemic which he sadly knew little about. It breaks his heart he didn’t know about this 6 years ago. So like other docs his lack of knowledge wasn’t malicious. Just something he never learned about.
Yes, migraine is underlying cause for mav. And there is a big genetic component to migraines. However, IMO, when it comes to 24/7, crippling, dizziness along with other neurological symptoms there is way more than generics going on. No comparison to someone with headaches to 24/7 neuro symptoms.
Sorry 4 broken sentences. I’m on my phone
Wow- I wish Mr MM was a Neurosurgeon. That is super cool!
Lisa, I wondered, what is your husband’s opinion on if there’s anything more than migraine/genetics going on when it comes to 24/7 headaches PLUS dizziness and other neurological symptoms?
— Begin quote from “leannefr”
Sorry. Here’s the link.
http://www.earcentergreensboro.com/medical-education/migraines/migraine_vertigo.php
— End quote
interesting how this website lists so many other possible conditions which could cause the dizziness before diagnosing MAV. I am quite sure I wasn’t tested for all of these things:
Meniere"s Disease (endolymphatic hydrops)
middle ear, mastoid, and brain infections
head and ear trauma
tumors of the ear, hearing nerve, and brain
metabolic disorders
endocrine disorders such as thyroid disease
benign intracranial hypertension
congenital abnormalities of the brain and brainstem (Chiari malformations, hydrocephalus, etc)
demyelinating diseases (multiple sclerosis, etc.)
autoimmune disorders (autoimmune inner ear disease, etc.)
vascular disease and abnormalities (stroke, etc.)
medication side-effects
hormonal issues
psychiatric conditions
toxic exposures
positional vertigo and benign paroxysmal positional vertigo
superior semi-circular canal dehiscence syndrome
traumatic perilymph fistulas (abnormal openings between the middle and inner ears)
In order to rule out the above conditions, it is usually necessary to have:
basic hearing testing
MRI and/or MRA head scanning, CT scanning, etc.
blood tests (complete blood count, blood chemistry testing including blood glucose, thyroid testing, tests for autoimmunity (rheumatoid factor, ANA, 68 KD antibody, Antibodies to Type II collagen, etc.)
special tests for syphilis (MHA-TP) and lyme disease (lyme titres)
occasionally neurologic testing including auditory brainstem response testing (ABR), electronystagmography (ENG), electroencephalography (EEG)
ophthalmologic examination of the eyes
possibly a spinal tap (lumbar puncture) for cerebrospinal fluid analysis (CSF)
a toxicology screen
MM - you’re funny. haha. he’s a cool guy, but his neurosurgical knowledge hasn’t helped me get well one bit lol. luckily, he’s incredibly supportive. I wouldn’t have been able to get through without his support these years.
In all honesty, both myself and my husband were very skeptical to even look into Lyme at first. that’s why I empathize so much with what you’re going through with hearing about Lyme. I was reading a bit about it, and I someone told me it would be good to look into. I thought this person was crazy! I was angry at her, and kept my distance. In time, I told my husband and he said, you have MAV, period. at that time, he didn’t know anything much about Lyme. he was completely misinformed! I even had a spinal tap last year and CSF fluid was clear of lyme, and my husband said that means I don’t have it. I started reading and found out that CSF fluid is about 90% inaccurate for diagnosing lyme. I would find exact stats now but so hard to look at computer but there’s a lot out there on that. Even my neurologist who was treating me for MAV, said if I had a spinal tap and it was negative I don’t have lyme. I couldn’t believe as I began to read and learn how incredibly inaccurate a spinal tap was, and then I read more about testing and began to understand the reasoning for false negatives. I spent the first few nights reading about lyme. I lost sleep. I was honestly scared to death as I thought it could be a possibility, and all that I was told (I didn’t have a rash, so don’t have lyme) was incorrect. less than 50% have a rash and even fewer see the rash. I seriously couldn’t believe what I was reading and couldn’t believe that I didn’t know all this. It took a lot of convincing to have my husband read about lyme. this was several months ago. but, he hasn’t stopped since. he researches it during all his free time. we have also seen many of the top Lyme docs in NY, and they explained all to us as well. I realize that I am very fortunate that I can see these doctors and breaks my heart that others cannot. but, we actually gained the most understanding from our own research. it has been so eye opening. to answer your question - sorry i’m so long winded but wanted to explain where I am coming from - a few months ago, my husband said I have migraine, it’s in my genes, now he says that I definitely have lyme. We have learned that it is an epidemic, and this is very scary. it is actually a hidden pandemic,and if you research more and watch that documentary you will understand why. I don’t think everyone has lyme. but, I do think many people with constellation of dizziness and other neuro symptoms (with all negative testing) can. He strongly thinks that MAV is name given for a constellation of symptoms that sometimes get somewhat better with migraine meds. He does think when things are more episodic and meds work, one doesn’t have to search as much for underlying cause and can accept MAV diagnosis. but, he has seen me go from a fully-functioning young person to completely bedridden and wanting to die in all honesty most days. I would never take my life, but the suffering is so deep that I hope to not wake up sometimes. 6 years ago I was full of life and was looking forward to a bright, easy, future. I have endured this 24/7 for 6 years. I always knew there was something deeper going on. My husband is sickened by the medical system and government who seems to coverup this pandemic. this has been very eye opening but also very saddening for us. the reason that I wrote that he is a neurosurgeon and that i have a PhD (it’s in clinical psychology, though, so I’m not some great scientist, but I do know how to do research lol) isn’t because that makes us any more special, but I wanted to explain that we are not people to just quickly accept a diagnosis of lyme. we were so skeptical at first. we are trained in research, and have taken learning about lyme very seriously and I would never ever come on this forum and discuss the possibility of lyme if I didn’t think it was a possibility for others. MM - again not saying everyone has it. I recall you saying that you felt good on vacation and, for me, I could be anywhere in the world, and I would still be feeling deathly ill. so, perhaps that is a good sign for you. although, lyme does have a life cycle, so some days might be better than others. and, women get worse around their menstrual cycle. also, learned that postpartum is the worst time for someone with Lyme. I am rambling away now. it’s so hard to look at computer so I’m just typing without double checking my words. so, please forgive me for how longwinded this is. I just wanted to explain where I’m coming from, and please know my heart is truly in the right place. It took me awhile to write after finding out about lyme as I did not want to scare people. I hated how scared I felt and didn’t want others to experience that fear- it is the worst, most unsettling, feeling. but, the fear is worth it if it ultimately give one his or her life back. I am still extremely scared. but, I have hope now. something, I haven’t felt in so many years. and, answers! it feels so good to finally have answered, and I am so thankful to have always listened to my gut which told me that something deeper caused me to go from having migraines 1-2 times per year to THIS. all I want is for us all to get well again! we deserve it more than anything
Lisa
Thank you for telling us all how it has been for you. Your story is inspiring & because you & your husband are fortunate not only to have the education & skills to do such thorough research but also the dedication to overcome all the obstacles along the way then I’m sure there will be many people who will benefit from your work. I hope one day we will hear that you are able to enjoy a happy, pain free family life again.
Barb
Barb- I just read that to my husband and we appreciate your kind words. I want nothing more than to have my boys see their mom healthy.
To Richy,
I am a veterinarian and scientifically minded. I found this list helpful in processing through this whole mess as this is how I approach my veterinary cases. To me “a diagnosis of exclusion” means there is no specific definitive test and you have to exclude all other possible causes in order to make a diagnosis. Of course history and specific clinical signs can give big clues. Sometimes trialing a safe medication and looking for a response can be it’s own kind of rule out test. I have had an mri, basic bloodwork, tick borne diseases screening (as inaccurate as they may be and have seen a neurologist and ent. Waiting to get into otoneurologist at Mayo. It will take 6 months. In the meantime I asked my doctor if I could trial migraine meds. I started taking verapamil 3 weeks ago and am doing SO much better. Yesterday I was able to go into work and drive myself. Three weeks ago I was bedridden. So I would say that my response to meds is pretty suggestive of mav. But if I relapse or if I wasn’t responding to meds I would definitely explore other avenues.
that is such great news, Leanne!! I hope so much that this continues and gets better and better from here!!!
wonderful news leanne!!! keep us posted on how things go!
Thanks! It is so great to have even a portion of my life back. When I was stuck in bed with absolutely no quality of life it felt like I would be that way forever. I am by no means “better” but I will take what I can get. Still struggling with daily pain, mild to moderate headaches and dizziness. But SO much better and I can function and be a part of my family again. I am so fearful of going backwards or having a relapse. Trying to just take it one day at a time. It’s been 16 days since my last really bad day. Hooray! Having gone through this my heart goes out to anyone suffering from a debilitating condition. It’s so isolating, feels like your own private hell that won’t end. But don’t lose hope! You never know when things will turn around.