Hi Everyone,
Thought some of you might find this interesting. It relates to my use of water Kefir which I believe helped me enormously
I am recovering on Lyme disease treatment, I have not been on migraine medication for 4-5 months. need I say more?
I wish you all well. If anyone would like to contact me, please do not hesitate. I have no issue discussing this rationally and openly, but feel it is not welcome on this board. There are many other causes to mav Iām just happy I found the root cause as I always felt there was something being missed.
all the best and thank you for your support through the toughest times of my life
Wc
Note from the admin: Be aware that the only cause of MAV is migraine. It is a migraine variant. If you have MAV (vestibular migraine) you are a migraineur and were born with the genetic predisposition. This person has indicated six posts above (June 2013) that they were back to normal on a migraine preventative regimen. It is very unlikely that Lyme disease is the problem as we all know that migraine symptoms wax and wane over time and various treatments can become ineffective. Nonetheless, keep in mind that a person with migraine needs to be certain there are not other problems going on triggering migraine:
(2) General medical ātune-upā ā migraine symptoms are more likely to flare if there are other medical/physiological stresses on your system. Migraineurs should work with their other medical professionals if necessary to get control of other health problems such as allergies, food intolerance, thyroid, blood pressure, blood glucose, and hormone problems, or any other obvious vitamin/ mineral deficiencies. Colds, the flu, and other viral infections are notorious for triggering nasty attacks and so good personal hygiene is key to reducing risk of infection (e.g. wash your hands often and avoid touching your eyes, nose, or mouth during flu season).
Long term antibiotics use is NOT supported in any evidence-based international guidelines for the treatment of Lyme disease. Four randomised controlled trials show that antibiotics are useless for āchronic Lyme diseaseā, a condition which does not exist according to the New England Journal of Medicine.
āThere is simply no scientific evidence that symptoms are caused by an ongoing infection of Lyme disease,ā says John Halperin, MD, professor of neurology at Mt. Sinai School of Medicine. Halperin agrees that some Lyme disease patients can experience real, ongoing health issues. However, he says, āIt has to do with how our nervous systems respond to different stressors. Itās probably due to a fundamental neurobiological trait of some people.ā Halperin believes the way to treat the problem is symptomatically. That means everything from therapy for depression to surgery for severe arthritisābut NOT months of antibiotics, which can result in serious side effects, according to National Institutes of Healthāfunded studies.
Hi Everyone,
Iāve reached a point where my condition is being managed really well and I feel confident enough to finally post a success story here.
I canāt tell you how amazing it is to finally be getting relief from the dizziness and pain of this condition! To all those who are suffering right now: please keep trying, especially if youāre in deep despairā¦Though itās hard to see it when youāre in the grips of hopelessness, there is hope and this condition can be managed and reined in. Please keep hanging in there, though itās tough and unfortunately recovery doesnāt happen overnight.
I consider myself recovered and managing well, after 6 years ill with VM (on and off - but unfortunately mostly on). I credit the right medications (after a series of unsuccessful trials), psychiatric help (since I have severe depression and anxiety), and lifestyle changes for my recovery. I canāt thank the doctors who supervised my treatment (psychiatrist, neurologist) enough.
Therapies used and doses to get well: Abilify 2 mg, Cipralex 5 mg, Magnesium citrate 150 mg, B2 100 mg
Other therapies: Psychotherapy, Stress-reduction techniques such as mindfulness meditation, breathing techniques, DBT (Dialectical Behavioural Therapy), light exercise (mainly walking and stationary biking)
How long the therapy took to work: Within a week (luckily)
How long it has been successful to date: 4 weeks and counting
I hope this information is useful and I hope my adding a success story here brings comfort and hope to someone (I know that in my bleakest moments, reading success stories helped take the edge off the despair). If anyone has any questions for me about my recovery, please feel free to ask.
My sincere best wishes to everyone here - hereās to hoping you find the right ākeyā that unlocks the door to keeping VM at bay!
-Brenda 
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Okay, so it might be time to post on here 
Back in September of 2013 I started getting lightheaded - didnāt know why. This lead to a major panic attack that sent me to the ER. I thought I was dying. For months I went from doctor to doctor trying to figure out what was wrong with me - ENT, neurotologist, GP, chiropractor, therapist and finally a neurologist. After dealing with lightheadedness, feelings of almost passing out, extreme head pressure, mild head pain, anxiety for 9 months I finally decided to take the medicine my neurologist prescribed - Effexor. It has been a God send! After 2 weeks I noticed a difference - lightheadedness diminishing, headaches were very seldom, the weird visual stuff pretty much gone. I had my life back. Able to go out with friends, work long hours, do yardwork - I was able to feel normal again. Two months ago I started on 37.5 mg and a couple of weeks ago I started taking 75 mg. Most days Iām like 95% - not 100% but I think that comes from knowing about all of this mess. I drink whatever I want, eat whatever I want, work my two jobs, go out with friends (actually feel even better when Iām out). I do have issues around āthat time of the monthā but Iām sure that will get better with time. My neurologist wants me to take Effexor for a year and thatās fine. I hope this feeling better continues, I really do. I have this small fear that itāll come back but thatās the anxious part of me that sucks. I know itās really always there. Yes, Iām very lucky and thankful that the first medicine I was given is working for me. I thank God every day for this! Coming through the bad part of this has given me strength and knowledge and Iām so grateful for that. This site has helped me through so many bad days, gave me a sense of peace in knowing thereās a way out and better days ahead. I hope all of you still suffering can one day find peace with this and a resolution. Iām not 100% āfixedā but Iām able to enjoy life again. Honestly, best wishes to all of you and thank you for being here!
Bridget
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Itās nice to hear success stories. I have been suffering 24/7 vertigo feeling. I am on Effexor about 6 weeks but yes to see results. This forum gives me hope. If anyone is from Canada can you plz suggest a good neuro.
Dear Lindsay
How you are doing now?
I got it at similar age as you and your grandma and your story has inspired me as I got diagnosed just 2 weeks ago .
Thank you
It great to hear that you are doing ok. How do you feel now?
I am looking for a good neurologist in Toronto/ GTA area, or in Canada - well, now you have a lot of way to communicate Can you recommend one? You said that there is a large migraine research centre in Canada?
Thank you
Hi GalGo,
if you go to this website:
http://www.headache-help.org/doctor_list/Ontario
You will find a list of neurologists in the Toronto area interested in treating migraine and headache.
What I was talking about in an earlier post specifically was a medical clinic/research clinic in my city of Calgary that specializes in the treatment of migraine disorder. Unfortunately, to attend this clinic a patient must be a resident of the province of Alberta.
What is important is finding a neurologist that will listen to you and will encourage you to titrate a medication at your own pace. There is no way that I could have have increased the Topamax by 50 mg every two weeks as some neurologists were suggesting. I was so sick with MAV and so sick from the Topamax initially that I could barely stand. My neurologist let me do this over several months.
You need a doctor that will listen to you and be patient - that is so important because you may have to trial several medications to find one that is right for you. I did this before I found Topamax and recovered from MAV - Lisa
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Iām so glad to see that someone else got better on SSRIs!! I thought I was the only one. lol
Hi Dizzybee!,
So great to hear that you are feeling much better! i have heard good and bad things about Effexor but mainly good things! so glad it is working for you!
I have a couple of questions for you if you wouldnāt mind answering them please
before you were put on Effexor did you have many triggers, such as diet or weather?
You mentioned you now eat and drink what you like which is what i am extremely jealous of haha
how are you feeling these days? and did you have any side effects when you first started Effexor
Hope to hear from you soon! i cannot wait to live a normal life again. Having vestibular migraines is really a full time job and an absolutely exhausting one 
Hey Charlotte! Wow this is an old postā¦lol! Before Effexor stress was really my only trigger. I could always eat and drink whatever, weather didnāt affect me (that I could tell). I honestly think I had a nervous breakdown and possibly was suffering from depression. My brain went berserk! 
But, now Iām good. My neurologist has me getting off Effexor - it fixed the migraine issue but I also gained a lot of weight. Like 60 lbs in 2 years. I tried getting off Effexor but had to do the Effexor-Prozac bridge. Without Prozac I wasnāt able to get past day 3 of no Effexor. Now Itās been a week since taking my last Effexor pill and Iāve noticed no withdrawal symptoms. I have one more week to go on Prozac then Iāll be done with meds (unless migraines come back).
Side effects when first starting? Gosh thatās been so long ago! Iād have to say that it interfered with my sleep at first and then it made me sleepy throughout the whole time I was taking it. I canāt really remember much else about any side effects. Oh, it made me a little gassy. That passed, though (no pun intended!). Other than that and the weight gain nothing really.
So, Effexor was a godsend for me, I just ate way too much on it. I have no self-controlā¦lol! Itās an awesome drug, I canāt speak ill of it. My weight gain was my own fault. Now Iām working to get it off.
If you have any more questions let me know!
Good luck to you! Getting back to normal is possible
Take care,
Bridget
Oh ok sorry for making you have to go theough all this again but i really really appreciate you talking to me about it. It really gives me hope as i have heard so many horrir stories of people who do not recover
Do you know what sort of symptoms you had before going on effexor whuch helped you?
How okd were you? so glad your doing much better i hope i can get there one day too! Im 22 years old and from australia
I didnt realise effecor caused weight gain but i would rather weight gain than dizzy spells any day of the week hahaha
Oh itās fine Charlotte, happy I can offer advice!
My symptoms were 24/7 lightheadedness, head pressure, feeling I would pass out, extreme anxiety. Sometimes it even felt like the ground dropped beneath me. Looking at strong patterns would bother me, going into busy places would make me feel like I was gonna pass out. I was almost 41 when this hit meā¦Iām 43 now. Not everyone gains weight with Effexor, I always had a tendency to overeat, Effexor for me exaggerated that.
I hate this is happening to you at such a young age! Did something happen? For me it was years of stress and a bad childhood. I go to counseling which helps a lot.
I was nervous about taking Effexor because of things Iād read about it. None of those funky side effects happened to me. It truly did help me.
Bridget
our symtpoms are slightly different but still very similar, my anxiety is so bad! being in busy or loud places seems to flare up the vm and its awful!
i hope i can get onto a preventative that helps me eat more, because i have a few food triggers at the moment and its so hard to find things to eat and feel normal! Being only 22 it really has taken a toll on me and put me in a bad place.
I have been unwell with other stomach issues for about a year but i was finally starting to feel much better and being positive! then i got a viral infection called vestibular neuritis and its triggered vestibular migraines
i dont want to have this the rest of my life, theres so much i want to do. I dont want to be afraid of the weather changes, or afraid to eat at restaurants or what food i can actually eat. theres too many restrictions and triggers and i feel like i canāt be a normal person. this is not an illness i would wish upon anybody!
i also have no history in me or my family of migraines o hard for people to understand what im going through around meā¦
so lucky none of those side effects happend to you! so did you not have any triggers at all really?
how long till effexor actually started changing your life?
Charlotte
Hey! Effexor worked great for me. The key is to start low and slow. My neuro wanted me to take a whole 37.5 pill starting off. I actually cut that in half (heād given me tablets by mistake). It took a few weeks for me to reach 37.5 but when I did I noticed an improvement right away. Took me several months to feel really good but it helped within the first few weeks. It interfered with my sleep but that quickly went away.
Bridget
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Have you considered only one of the meds may be giving you relief?
Hello, your symptoms sound so much like mine. I was wondering did you take the Exeffor before being diagnosed? I have the prescription for itā¦I am scared to take it. My ENT says that I have made migraines but the Neros are not sure? I saw in one of your posts you took a chance and took it. I just wanted your opinion
Just wanted to chime in that I took Effexor years ago (not for MAV, as I didnāt have any of those symptoms back then), but as someone who is pretty sensitive to medication side-effects I honestly do not remember having any issues with that particular medication. But do what I always do ā start smaller than what the doc recommends, and titrate up slowly as well.
My Story
in January this year after 10 month of a constant migraine in my head and neck I came across atlas profilax on my final desperate search for help. I had spent 2k already on different treatments and meds and contraptions and nothing helped.
Meds - amytrip, cocodomol, paracetomol, anti-inflammatories, every vitamin and supliment under the sun, I was skint by 9 month
I had vertigo, pain in skull, migraine every day from scale4 to 10, arm pain and tingling, tinnitus and major depression and suicidal thoughts.
I had the atlas alignment done with a lovely lady who explained that it was just a hard massage that makes the muscle holding the bone relax and allow the bone to fall into its birth place.
I was soo desperate I would have tried anything and paid anything and robbed a bank to do so.
after the treatment I suddenly could breathe better (as an athsmaic) deep in my chest, my eyes were the best part as I have perfect sight but everything was so clear and bright and like 3d. strange I no! its not now as im used to it but at the time I was excited. I could read better as a dyslexic but sad to say that didnāt last.
my head pain went but adrenaline may have kept that at bay so I waited. after a week of hell it al went away. I started to walk again do dishes get dressed wash my hair and go back to work : )
nearly a year later and I no longer have that pain. The migraine flared up for the first week then poofed away. I was scared to accept it because I though it would come back and ruin my life again but it didnāt.
I do get a headache say 3 times a month but the painkillers keep it at bay when I get one. Im no longer bound to a sofa with no life.
There after affects which if you want to know about just ask me.
ive seen a lot of people slag this procedure off but all I can say is when you are as desperate as I was you will try anything and im blessed I did.
im not in full great health I still have areas to work on but as for head and neck and sinus pain its all gone : )
those who live with pain have my respect and sympathy as each day is such a struggle.
thanks for reading
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Hello, I was reading these posts and how familiar many of the debilitating symptoms were to me before I found permanent relief. I was extremely frustrated before I found the answer.
I felt hopeless in trying so many modalities to āfixā my atlas and put it into position.
I figure I would post in the success stories as well as I am so happy and want to share.
Then I found Atlasprofilax which is worldwide and has helped millions of people with only one treatment.
It seemed like a leap of faith because it claims that only one treatment is needed to put the atlas into itās correct position and they guarantee it will stay. You only pay once ($300) and they will see you going forward if needed- for free!! That is AMAZING! They stand behind their claim and I respect that about atlasprofilax. The day I got treated I felt amazing!!! I was hesitant to believe this to be true, but 2 years later, I am still symptom free.
Go to their website and find a practitioner near you- REALLY!!!
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