Scott, Victoria, and I have come up with what we hope is a very good summary of some of the most important key points that you need to know, when battling the beast that is Migraine Associated Vertigo. We hope this helps! Thanks to Dr. Steven Rauch (Professor of Otology and Laryngology, Harvard Medical School) who was kind enough to give us his input as well!
Kindly,
Elisha
THE TEN COMMANDMENTS OF VM
WHEN YOU GET YOUR VM DIAGNOSIS, ACCEPT IT. Once you have had thorough testing done to rule out other peripheral and central causes of vertigo and receive a diagnosis of vestibular migraine (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 VM then treat VM (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. DONāT DO IT!
DIET AND LIFESTYLE MATTER. Regarding the migraine lifestyle and diet. Do NOT ignore it! Caffeine, for example, is a big NO-NO for most migraineurs. In addition, use pain killers and nasal sprays SPARINGLY. Overuse of painkillers and nasal sprays can trigger the chronic migraine state, cause horrific rebound pain problems and/ or can render migraine medication totally ineffective. Note that food triggers appear to affect about half of migraineurs either in isolation or in combination (e.g. cheese plus wine) before triggering an attack. You will have to experiment to find and/ or rule out food triggers.
DO YOUR HOMEWORK, PART I. Read āThe Migraine Brainā by Carolyn Bernstein and David Buchholzās book āHeal your Headacheā.
DO YOUR HOMEWORK, PART II. Thoroughly read the information on this forum. There is a wealth of evidence-based information here for you to digest including reports from the science literature, commentary from specialists and fact sheets from respected clinics. You will learn much from this forum. Donāt just read the posts from other members. Hereās a good place to begin: http://www.mvertigo.org/forum/viewtopic.php?f=1&t=5838
DOCS WHO TREAT MIGRAINE CAN TREAT YOU. While it is important to find a doctor to help guide you on your path to wellness and to feel that you are not alone as you navigate the world of medicines, ultimately it does not matter which doctor you visit once you have a diagnosis as long as they are willing to trial migraine medicines with you. The medicines you trial is what matters most if lifestyle modifications alone do not adequately manage your symptoms. Donāt worry about trying to see the ātopā VM specialists at this point. In the end they will prescribe the same medicines that your local GP or neurologist would prescribe. Look at the list of migraine medicines listed in the 2012 National Guidelines (http://www.mvertigo.org/articles/national_guidlines2012.pdf), print it out, and take it to your doctor.
MIGRAINE MANAGEMENT IS A PROJECT, NOT AN EVENT. Medicines take TIME to work. Getting well takes TIME. Sometimes a lot of time. It may take over 3 months to have significant improvement from your medicine. You need to give a medication a fair trial. You can get better on meds; so many of us have. It may take time to find the right medicine or medicine combination. Donāt get discouraged. Some of us have trialled more than 10 medicines before we got better, some hit the jackpot on their first trial.
MOOD MATTERS. The more anxious and depressed you become, the worse VM gets. It really does. SSRIs can really help as do benzodiazepines such as Valium. Be careful with benzos though. Not only can they cause addiction but they may make vertigo worse in unusual cases when overused. However, overall, benzos are probably one of the best medicines for relieving acute VM symptoms with few side effects when used correctly. Be medicinewise.
BE GOOD TO YOURSELF. Get lots of sleep (but not too much as that can make migraine worse) and stick to a schedule of going to bed at the same time every night, eat fresh and avoid processed foods, and exercise (as much as you can aiming for 30 min daily). These things probably wonāt stop all symptoms on their own but if you donāt take good care of yourself you will feel MUCH worse.
TRY DIETARY SUPPLEMENTS BUT DONāT SWALLOW EVERY ALTERNATIVE MEDICINE. Try a daily magnesium supplement. Also try vitamin B2, Co-enzyme Q10 and butterbur. but BEWARE OF ALTERNATIVE MEDICINE and implausible treatments. Almost all of it is completely ineffective, expensive and useless nonsense without any evidence. Donāt waste your time on this no matter how convincing someone sounds or how persuasive the treatment reads. Usually people report feeling better for other reasons unrelated to the alternative therapy they havenāt identified or itās a simple short-lived placebo effect.
HORMONES MATTER. Regarding hormone fluctuation in the ladies: you will feel MUCH worse during hormone fluctuations until (and maybe even after) you get your symptoms under control. Plan accordingly. Keep track of your cycle and be extra diligent about avoiding ALL triggers during this time. As estrogen and serotonin levels drop in this time so get extra sunlight, exercise, do whatever you can do to boost serotonin and make yourself feel a little bit better. Hormone fluctuations are the worst possible MAV trigger for many of us. Be careful with making big plans during these times as you may feel at your worst. Give yourself a break.
The original post of Elishaās that covered these 10 critical key messages was one of those brilliant ideas that just had to be captured and set in stone as a sticky on this forum. These statements clearly represent the corner stones in the āproject managementā of MAV as Prof Steve Rauch coined it above ā the basics of MAV 101. Thanks again to everyone who contributed their input.
FANTASTIC work guys. I wouldāve love to have had this when I first was diagnosed so I really hope all who are new and feel overwhelmed read and follow this. Love this and love this forum. This forum literally saved my life and I hope it continues to do so for many many more.
This is fab but I just want to say be really careful about using SSRI s to help with anxiety. My neurologist thinks cipralex may have triggered my normal migraine to transform into vestibular migraine. Also, I read that book before I developed vestibular migraine. It is really good for finding out food triggers etc but does not have much info on chronic or vestibular migraine.
Great post though x
I had my first occurrence what I now believe to be MAV earlier this year, and it was very scary. It was the morning after Iād been to a concert with my daughter. I woke to intense rotational vertigo and palpitations. I didnāt know at the time if the palpitations were causing the vertigo or vice versa. I live alone so called for paramedics. Everything checked out ok, and, as at the time I was under a great deal of stress with because my sister was terminally ill, it was decided that Iād had a panic attack. I thought that was the end of it, but a couple of weeks later it happened again, then again a couple of weeks after that. I had all sorts of tests, X-rays, blood tests, MRI and wore a heart monitor for 24 hours, again nothing.
I was referred to and ENT specialist, because Iād lost a high percentage of hearing in my left ear. He ruled out Meniereās and vertigo and suggested that I might have migraine with aura. He admitted that he really didnāt know what was happening but suggested beta blockers. My own doctor was reluctant to prescribe them and instead suggested Prozac and counselling. I refused the Prozac but accepted the counselling as my sister had passed away.
I found it difficult to describe the symptoms. Was I dizzy? I couldnāt say I was, just fuzzy headed, and I couldnāt stand loud noise, bright lights or busy places.
Iām so pleased and grateful that I found this forum, as others describe the symptoms so much better than I had, apart from knowing that I wasnāt going mad. Heavy head, fuzzy head, bright lights, noise, crowds. All of them have some kind of effect. I have had all of them at some point, mostly the heavy/ fuzzy head but I am finding that it is diminishing slowly unless aggravated. Iām putting myself in these situations for short periods of time in the hope that I will eventually adjust.
I shall be visiting frequently to see what others suggest. At least I know Iām not alone, and to be honest, I was beginning to think it was all in my head
I feel so bad for you Jo-Jo, itās such a terrible condition to have. You are certainly not alone and you will find such good info on this site. I hope you find a good Dr. that can help you! Good luck!
āI was referred to an ENT specialist, because Iād lost a high percentage of hearing in my left ear. He ruled out Meniere/vertigo and suggested that I might have migraine with aura. He admitted that he really didnāt know what was happening but suggested beta blockers. My own doctor was reluctant to prescribe them and instead suggested Prozac and counselling. I refused the Prozac but accepted the counselling as my sister had passed away.ā
Hi JoJo,
Iām so sorry to read about all the stress you are going through -I can relate to it well as it sounds so like my story. The dreadful symptoms, many visits to docs/ENTS who had no idea what was wrong & not much to offer in the way of meds.
I was offered amitriptyline and Ativan by one of the GPs I saw. Not told the ami could be a migraine preventative! I declined the amitriptyline as I didnāt think I was depressed & was scared of the benzos as Iād heard they were addictive. I was totally unaware of all the migraine preventatives that could be tried and was not informed by my docs. Although having a lifetime of migraine headache I had only ever been offered Sandomigrain as a preventative which left me totally āspaced outā.
Bedridden for months - couldnāt use a computer, watch TV, walk without help, etc. When I was eventually able to use a pc for a few minutes I found this site and began educating myself from the great store of info on the forum. (Took a long time as I got dizzy after 5 mins).
Commandment No 7:
However, by that time I had sky high anxiety, daily migraine & panic attacks. All this contributed to outbreak of psoriasis all over my body which, up till then, had only been on my scalp and had been under control for many years. On one occasion when I was terribly dizzy & terrified, breathing rapidly & had a huge panic attack etc my husband called an ambulance. I suffered an episode of TGA (temproary global amnesia) which lasted over 12 hours.
So I found out the hard way that anxiety & panic attacks made my MAV much, much worse & how important it is to use a med that can calm me down - not to worry about all the reports about addiction, etc. That is for very long term users!
I eventually found a mav specialist and so much of my anxiety āfell awayā when he understood all of my weird symptoms & offered meds which heād had experience of helping with mav. Now Iām well on the road to recovery with his help.
Barb
Thank you both for your sympathetic replies. I actually feel quite lucky as many people here are experiencing far worse symptoms than I have. It is good to know that Iām not alone in dealing with this. I am seeing my GP later this week and will chat to her regarding this, and see if between us we can come up with some kind of medication. I had no idea that there were migraine preventative meds. I wish you both well and hope that your symptoms continue to diminish.
Kindest regards
Jo xx
Hi Jojo
just a quick suggestion - print off the list of preventatives (posted under Evidence based meds) & take with you to show your GP - she may not have this recently updated list.
Let us know how you get on!
Barb
Prozac actually did relieve my MAV symtoms! It was just too stimulating for meāit is known to be a very stimulating SSRI and can leave you feeling like youāve had too much caffeine. I was jittery on it so I switched to Lexapro. Prozac has a long half life so it is easy to wean off of, and many people use this med to transition to another SSRI.
My MAV started with dizziness that at first was believed to be due to postpartum depression/anxiety and I was prescribed Celexa. It worked to alleviate the axiety, depression and MAV symptoms. Iām now on topiramate (generic Topamax) and Lexapro.
So, if you do find that you need a med to deal with anxiety/depression, Prozac or another SSRI may not be a bad starting point because it may just knock the MAV symptoms out for you as well. Stress definitely makes my MAV symptoms worseāand my oh my, donāt we live in a stressful world???
The list of commandments is very helpful, I did want to address the first one. MAV is a diagnosis of exclusion. There is no test that definitively tests to determine this diagnosis. There may be other conditions that can mimic MAV, and not all doctors rule out every one of them or take the time to get a complete and accurate history to ensure that they have not missed one of the many things that could be wrong. I am just certain that not all MAV diagnosis are correct. Doctors are not infallible.
I would think that if you are not well after being diagnosed with MAV, and trying the treatments, then the diagnosis could be wrong, like it was in my case. I did indeed have chronic headaches (not the painful variety, but the dizzy variety) the treatments for MAV made me worse because the underlying cause for my headaches was intracranial hypotension. I had a leak of spinal fluid in my neck wch was caused from the torquing of my neck during a routine basil cell surgery. I felt very weird during the surgery and the symptoms cam full on a few days later. With that being said, the spinal fluid leak was essentially causing a migraine, and I have benefitted from some of the Migraine lifestyle modifications in combination with getting my leaks sealed. But the improvement began with getting the pressure right in my head first. Most of the MAV treatments actually lower pressure and that was why I could not tolerate them.
Another very under diagnosed condition that creates chronic headaches is the opposite condition. Intracranial hypertension. This is a condition that is common among women 30-50 who are overweight, especially if they carry their weight in the abdomen. The good news with this condition is that drug therapies can help and weightloss can even cure the problem in many cases. One drug that helps is Topamax. It is very possible to get a MAV diagnosis, and have successful treatment using Topamax, when the issue is really intracranial hypertension.
SCDS is another condition that has similar symptoms to MAV, it often is missed and goes undetected on MRI scans because it requires a special type of scan to find it. It is rare, but for people who are not getting better with MAV treatment it may be sometng to look into. One of the common symptoms for that is vertigo which is set off by sounds, or hearing ones own heart beat.
So I guess I just think it is never time to just trust a diagnosis if you are not getting better. Keep searching. You are your best advocate.
Iāll have to look further into the other conditions you mention and their prevalence but I would point out that migraine is by far the most common cause of these problems people face. If you do the maths and realise that approximately 12% of the population (16% in women and 8% in men) have migraine, itās not surprising that most of it boils down to migraine. To me itās like trying to find a very unusual cause for a personās running nose when itās quite clear they have a common cold.
ā Begin quote from ____
I did want to address the first one ā¦ There may be other conditions that can mimic MAV, and not all doctors rule out every one of them.
ā End quote
And we have said the following: "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) ā¦ " This means that it is up to you to find a good migraine specialist who will use differential diagnosis to help you work out what is wrong. Clearly, by listening to a case, observing that meds and lifestyle are not working over time they would begin looking for other potential illnesses either in isolation or complicating the migraine treatment. That includes your CSF leak.
Migraine is a genetic and an inherited condition. That is solid like we understand the theory of gravity. We simply donāt yet know how to turn the genes off or prevent them from being expressed. If the fluid leak was triggering (not causing) āmigraine headacheā as you say above then you ARE a migraineur, period. You are either dealing solely with migraine disease triggered by the leak, both migraine disease and the leak producing symptoms (headache), or the CSF leak producing symptoms alone ā i.e. you do not have migraine. Do not confuse a bad headache with migraine in this case. You seem to use the terms interchangeably. You may be getting non-migraine headaches solely because of the leak.
If a solid migraine finding is made through differential diagnosis, itās probably correct. To chase a dx that impacts 0.005% of the population (CSF leak) could lead to a wild goose chase as Elisha described and one that can potentially waste a lot of time and money not to mention an invasive procedure to patch it. We already know of one person here who followed though with this for naught ā and they ended up much worse off for months afterwards. Clearly an unfortunate mistake. Of course if no medicines make any impact nor does lifestyle modification and you show some clear indicators for CSF leak, it makes sense to chase it up.
No one said specialist are infallible. They can only do their best based on the current evidence, through differential diagnosis and using their own expertise. And yup, for many this is a dx of exclusion. For others itās crystal clear.
Scott good point about it being genetic. If you donāt have family members with migraine, that would be a good reason to not to stop looking once you have a MAV diagnosisā¦ (I have no history of migraine in my family). But the CSF issue caused my headaches.
Intercranial HYPER tension (opposite of what I have). Is thought to be more common than high blood pressure, and if you look at the article I posted, it is listed as a cause of headaches in a paper about migraine. ANyone can be at risk for it, but it is a common affliction in people who are overweight and carry their weight in ther tummy.
leakers do have migraine-like symptoms and the headaches are worse depending upon how bad the leak is. many leakers are also dizzy just like meā¦ I was a fairly typical patient being treated for IC hypotension. because it causes a chronic headache. As does HYPERtension.
I am just putting this out there for those who are interested enough to want to look into it for themselves. Knowledge is power.
I do not wish a spinal leak on anyone. It is not necessarily easy to fix. There are also additional things that can happen to your brain if you have a leak or high pressure. I have had blood pressure issues as well as thyroid issues, due to the malfunction of the hypothalamus due to the pressure problems. There can be hearing changes. I have neck pain. But when my leak is sealed like it is now, the difference is miraculous and life changing. But due to the location of my leak being in the cervical spine, I have to be very cautious.
So if the chances are slim, it is worth it to me that people have ts information if it only helps one person.
I will post a paper on IC hypotension from an expert at Cedar Sinai shortly for your information.
If you arenāt up for the entire read, I would direct you to the Paragraphs titled other headache patterns, and miscellaneous symptoms. There are many centers in the US who recognize the symptoms of Intracranial hypotension, when it is not the most obvious cases. The three centers who are doing the most work to advance the study of the role of CSF fluid in migraines and other debilitating conditions are Mayo, Duke and Cedar Sinai.
Hi Guys, thought Iād bring you up to date with whatās happening. I went to see my GP and mentioned MAV. She admitted that she was unfamiliar with the condition, but to her credit, looked it up on line while I was there. She also had a look at this site.
She asked a barrage of questions and eventually decided on a very low dose (0.5mg) of Pizotifen and recommended one tablet per night. She knows I live alone and that Iām reluctant to take anything thatās going to knock me out. (I donāt want to be half asleep if the house should catch fire in the middle of the nightā¦paranoid? maybe )
I started taking them on Monday, and so far so good. The heavy/fuzzy head has all but disappeared. No episodes of dizziness, or feelings of pressure in my ears.
They make me drowsy enough to fall asleep, and so far the only side effects have been that I dream a lot more, and I eat a lot more. I havenāt been in any crowded or noisy places, or around bright lights, so it remains to be seen if any of that restarts the problem. In the meantime I hope they continue to work. I realise how lucky I am (so far) to have found something so quickly that appears to be working.
Regards
Jo
Wow - thatās great, Jo! Sounds like you may have found the right med early onā¦ (Also makes me wonder if I might have to start looking for ways to get some Pizotifen here in the US, if the Amitriptyline trial doesnāt work outā¦)
As for the paranoia about taking things when living alone, I TOTALLY understand. I was given a sample of Lyrica to try, but didnāt due to the potential for āamnesia.ā Plus there was another med I was prescribed a while back to help with sleep that I wouldnāt take because of the possibility of sleepwalking and sleep-driving. Seriously??? Whoās gonna stop me when Iām headed out the door and unaware? My kitties? I think notā¦ (Funny - and yet not - I was reading the newspaper recently and there was an article about a woman whoād taken some sort of ānatural sleep aidā whoād ended up at the hospital after sleepwalking over to a neighborās house, ringing the doorbell, and undressing on the doorstep! The whole article was focused on the fact that the woman had also removed some expensive jewelry, which the EMT from the ambulance company was accused of stealing, but still - Iād like to know what she took!!)
Hi guys,
Just found this site and read the 10 commarndments. WOW!
Only diagnosed in Nov 2011. From all the symptoms that have been spoken about describes me down to a tee. Why then is it so hard to get doctors to understand what you are going through?
Had all the tests done, all came back negative. Every time you tell them whatās going on they look at you funny.
Finally I was put onto a specialist and we have tried a number of drugs. Some I can pronounce, some I canāt. At the momment on Epilim (1200 mg) a day. This has made some small improvements to the migraine but added a lot of side effects.
Does anyone know if there is light at the end of the tunnel? Going on for 12 months now and I still rarley leave the house. :?:
There is light at the end of the tunnel! I can sympathize with you 100% Steve. I had a horrific experience with Dr.'s when I first came down with all my symptoms. It took me a very long time to find a good Neuro to diagnose me. Now, after over a year and a half Iām about 90% better. I too was bedridden for months and pretty much house ridden for the better part of a year. Itās a tough road but it does get better. Hang in there and think positive, that really does help!
Inafog-I just read your posts and it really made me wonder if you have MAV. Do think you actually have migraine? Or just CSF leaks (not that that condition in itself is not horrific enough). Iām just curious if you have other migraine symptoms or if Dr.'s have told you that your condition is migraine. Obviously as Scott stated there are strict guidelines in defining migraine and from what I understand about your case it seems to me that you donāt have migraine.
How are you feeling by the way? Have the patches held up well for you? I know you have been through the ringer! Thank you so much for your support through all of this, you have been so kind.
My CSF Leaks essentially produced a chronic headache. Headaches can be triggered from Intracranial hyper or hypo tension. Hypotension is caused from a csf leak, which I have had in my neck area. The issue with sealing neck leaks is that it is difficult because the neck is such a mobile part of the body. I am currently sealed, but the longterm pressure issues have caused thyroid problems, so I am dealing with that currently. I have no idea what my prognosis is long term as far as keeping my dura sealed, I am just taking it one day at a time. I am happy that my imbalance is pretty well resolved for now, that is the worst symptom!!!
If someone has migraine headache triggered from IC hypertension, I think the MAV Strategies and drugs can be very helpful. I have used those strategies when having rebound pressure issues after patching and it has helped. CSF pressure can effect any of the cranial nerves. The vagus nerve is the culprit for the dizzies and also IBS type symptoms. Topamax is said to be very effective because it helps issues with the trigenmial nerve. So I am glad that you found that drug and it is helping your symptoms. It was suggested for me as an alternate to Diamox when I had a longer bout with rebound pressure earlier this year, but I never got to it before I sprung another leakā¦
I found a local Neuro ophthalmologist who I went to see due to my increasing visual symptoms, basically he said that although my issues are caused from a csf leak, my symptoms are exactly like the symptoms he sees in his practice every day for people who have MAV. He suggested the UW headache clinic, and to try some of the strategies that have worked for migraines, because they have success in treating the symptoms I have. I am most interested in the non-medicine options if I have a relapse, because most of the medical options, like Topamax, reduce intracranial pressure and would make me worse. I would consider Botox, which has had some great study results published recently.
I am truly filled with joy for you that you are better and that you can be there for your sweet little boysā¦I just sent my youngest off to college in Indianaā¦sniff sniffā¦e time with kids goes by so fastā¦so happy you are well enough to savor your time with them now. It was a rough couple years for both of us, and it looks like we have both come out the other side with the answers we needed to get better.
(Funny - and yet not - I was reading the newspaper recently and there was an article about a woman whoād taken some sort of ānatural sleep aidā whoād ended up at the hospital after sleepwalking over to a neighborās house, ringing the doorbell, and undressing on the doorstep! The whole article was focused on the fact that the woman had also removed some expensive jewelry, which the EMT from the ambulance company was accused of stealing, but still - Iād like to know what she took!!)