Diagnosed with Vestibular Migraines

Hi all,

After reading all of your posts, I could pretty much relate to all of your symptoms and to your frustrations.  For me, my symptoms presented in a different way.  Although, I suffered from a handful of migraines in the past 10 years(mainly during pregnancy).  My body started to shut down due to undiagnosed celiac disease and then the vertigo/ dizziness mixed with acute anxiety began.  After being hospitalized for 3 days and undergoing every test know to man, I was released without a diagnosis.  Many appointments later, I was diagnosed with Vestibular Migraine.  My neurologist prescribed tofranil once a day and klonopin once a day.  At first I resisted taking the meds.  I was hoping to find a natural cure.  I was committed to acupuncture.  I changed my diet but nothing helped me return to a normal life.  Finally, I began the treatment my doctor prescribed and I was able to return to an almost completely normal lifestyle.  My symptoms definitely increase as a result of my menstrual cycle.  I have to be more diligent in monitoring my diet during that time.  I have been on these meds for the last 24 months.  I take the lowest dosages of both pills and have tried to go off of them to see if I still have the vertigo 24/7 and unfortunately, I do.  I am now trying to find a natural remedy because I would like to have 1 more child.  I am 39 and my window of opportunity is closing.  If anyone has any suggestions, I would greatly appreciate them.  

Vestibular Migraine can make you feel quite desperate and saddened by your quality of life.  But, stay strong there is a therapy out there that can help.  No one can understand what it is like to live with these symptoms until you experience them yourself.

If you find something or someone, please tell me as I am you!

Can u tell me what is the special food diet.

Hi there, I am just wondering whether you had any luck finding some natural remedy? I have been diagnosed with VM in 2009 and with the medication prescribed it was pretty manageable but I stopped using it 4 weeks ago as we would like to have a child. Unfortunately VM is fully back so I'm looking for another option. Thank you!

Your story sounds very similar to mine as far as how long I have been dealing with Vertigo and getting misdiagnosed. I've had Vertigo since my early adolescents. Couldn't go on swings, roller coasters, get over heated, plus more. As I got older and life of course got more stressful, I would experience Vertigo and Migraines. Sometimes during different times, sometimes together. In my early 20's I was diagnosed with middle ear vertigo and was given Meclizine and would only have to take it every blue moon or if I knew I was going to do something that could trigger it. Now over the past 2 years I seem to be having it all the time. I started seeing a new Nero logistics and he diagnosed me with Migraine with Vertigo which I learned later is just another name for Vestibular Migraines. He put me on Topamax along with my Meclizine, but nothing. If anything, it seems to be getting worse not better. Episodes are more frequent and lasting up to a week. I'm missing so much time from work that I've had to go on an Intermittent FLMA in order to not lose my job. Reading all of your posts have been helpful since I am desperate in finding some type of relief to be able to enjoy life once again. And yes, nobody really understands the physical and emotional toll this puts on someone. Thank you for your post.

i to have vestibular migraine for 8mnths tried pizotefen but put on 2 stone within a month went off them and my doc put me on a antihistimine as a migraine preventer still waiting to see what happens will it ever go away really scary brings on anxiety attacks

Going through alot with vertigo, and loss of balance. My suggestion is go see an ent docter that has a subspeciality in neurology. I suffered for over 25 years. Now seeing this kind of docter........going for a few more tests to rule some stuff out. I think this docter is going to help me. Need to get my life back!!!!

I read that book and tried everything you have....still suffering

I've been struggling with vestibular migraines for a few years now.... when it started it began with sudden attacks of the room spinning followed by severe fatigue and sensitivity to light. I also experienced some migraine headaches, sometimes accompanied by vertigo, sometimes not. These vertigo spells began happening at will, more and more frequently, sometimes I would have migraine auras in my right eye causing partial to full blindness for an hour or so... Always I would feel tired for the rest of the day and unwell. These attacks started randomly, in my classroom teaching, taking a walk, at the store, once a month, then they seemed to bee increasing at an alarming rate, exponentially, 6 times a week, to 6 times a day. I was afraid to drive.

I saw an ENT, a dizziness specialist, a Neurologist specializing in Multiple Sclerosis. I did multiple dizziness tests, I had an MRI of my head and neck, a spinal tap and finally was sent to an Otoneurologist. He heard my symptoms and diagnosed me immediately. It seems that my lifelong lack of gracefulness and proclivity for falling, my getting sick on the swing set, severe motion sickness, and a host of other "things about me" (I have always been a person who gets dizzy and nauseous, vomits multiple times from a few alcoholic drinks, etc) had an answer, I have vestibular migraines. I started taking Topomax 25 mg, 2x a day. It began to work immediately, I felt so different from my "normal" life that I cried tears of joy. I hadn't even known how unwell and dizzy my baseline had been. My life was so much better! BUT After only few weeks my symptoms began bursting through again, dosage increased, each time the symptoms burst through.... all the way up to the heroic dose of 100mg 2x a day.

At this point the Topomax started giving me some strange side effects. I felt weird. I had already lost a taste for beer, soda, and all kinds of beverages and I had lost 20 lbs, but I also felt like it "dampened my desire" in all kinds of ways...I lost joy in eating, getting drunk even tipsy occasionally and sex. I lost the ability to have please or even feeling in sex. I had extreme brain fog and I also began to have a terrifying neurological side effect. When I would read or do a crossword puzzle my brain would "race out of control" I cannot explain it actually. It felt psychotic. I promptly quit Topomax, feeling like I was loosing myself, it was making me sad, unhinged. My symptoms did come back but less, when I talked to my doctor he had mentioned eventually tapering back eventually due to not needing as much one day.....and I wonder if there is some sort of effect that he has observed but unable to prove in which the medicine can change the way the brain behaves after being taken for some time? I take Topomax still, but VERY, very small amounts so as not to experience side effects. I tirate my doses based on my symptoms, I take only 25mg a day.... when more symptoms show up I bump up the dosage a bit then slowly taper back down. In this way I keep my symptoms at bay but I enjoy a good quality of life. I also do not develop a chemical dependance which I do worry about... I am looking into herbal supplements as well, feverfew, butterbur, I was also taking magnesium and vitamin D to prevent MS (my MRI showed some lesions).... SO anyway. this has been my journey with vestibular migraines, they have been terrible and debilitating, but at this point I feel I have a working game plan by working my own game plan. Good luck

I have vestibular migraines and had an MRI done and it showed that the blood vessels in the back of my brain are enlarged. Is that due to the vestibular migraines ?

Hi

There is medicine called Sandomigrane good for chronic headaches , bit make u sleepy. Try herbs like feverfew for headaches and also gingo biloba and vinoceptine for Vestibular problems they do work , try in eBay or otherwise try kalimur forfluid in ears , or confirm homeopathic medicines for vertigo
Take care , I too have same issues

Hey try Sandomigrane for headaches, try gingo biloba , venpacitine herbal medicines check in eBay forblood circulation and dizziness or try homeopathic medicine.

Hi Chris B. How do you feel now. It been a year since you posted here. Did you find a remedy to get rid of dizziness. I too have all the symptoms dizzy spells 24/7 occassional headache, neck pain, head/ear pressure. I have been like this for almost 2 monthd now so frustrating i cannot do anything even if i want bcuz i always feel like zombie all the time. Just feel a little better to know that i am not the only one struggling with this situation. I need help and info.

Hi Chris B. Its about year since you posted here. How do you feel now? I too suffer from dizziness, head pressure , occassionally headache but did not a lot of test yet only blood test. Its almost 2 months now i feel this way so frustrating. Does yor dizziness like spinning or unsteadiness like on the boat rocking back & forth. I hope you could still read my post.

Did the calcuim channel blocker helps yor dizziness too? What kind of calcium channel blocker your taking? Is it for highblood?