Also…there is a differential diagnosis for me call Superior Canal Dehiscence…it is very rare I guess, my ENT told me that I have this but doesn’t believe that this is what is causing my problem. If my symptoms do not resolve I may have to go to Johns Hopkins to see the neurosurgeon there, because the neurosurgeon at Loyola said that he also believes it is MAV. and would not do the surgery on me I would have to go to Johns Hopkins…I hope it is MAV, not SCD, I was told that the surgery could leave you like a vegetable… this sucks
Hi everyone!
I finally saw a neurologist, who very definitively stated that MAV has a start and end point. ie. You get vertigo, have headache, and feel better in three days – max. Then you are completely normal and functioning until the next migraine episode. In other words, having ‘chronic’ symptoms (such as I have, spinning, rocking, falling sensation, floating, weakness, dizzy, lightheaded, etc) excludes me from having this condition. I explained to him that the severity of these symptoms vary, but are always present, at least slightly. He concluded that yes, I suffer migraine, but the vertigo is unrelated. He basically said I do not have anything which he can treat, as this vertigo is not neurological and has referred me (back) to an ENT!!!
I have already been through the ENT route, who is the one who diagnosed MAV! She basically decided that this is what I have, as all tests have come back negative (including Meniere’s)
I am very disheartened, and confused. Do I listen to the neuro or the ENT? I was hoping to come away with some great insight (and perscription) but instead feel more frustration. Also it took a few months to even see this guy, and I had many hopes pinned to that visit.
Unrelated, I have recently discovered I am 6 weeks pregnant (very unplanned). I have severe morning (all day) sickness and am fully medicated for this. Does anyone have any experience going through a pregancy with MAV? I hope to hear that it improves, as migraines seem to. Right now I have been stuck in bed for the past four days!!
Thanks for listening,
Mom of 3 (soon 4)
Hi Mum of 3, what if a person is having a fresh new migraine every day.
then they would have perminent symptoms,
How many migraines do you have per week?
if it takes a couple of days to recover and another one hits then the you’d be on aymptoms roundabout .
thats what happen in my case anyway.
as soon as my migraines stop for a few days my symptoms become mild just to be hit by the next wave rolling in.
I do believe DOC"s give way to much credit to the migraine criteria, and not to the real patient.
but who are we to winge we are only their victims.
jen
Hello Everyone,
Great forum!
I’ve been suffering from spells of dizziness, “head fog,” etc. for a little more than a year now. I’ve gone to a number of doctors about the condition, and finally ended up at a neuro-opthamologist who also specializes in dizziness and balance issues. The first “episode” I remember was when I was walking in the mall and all of a sudden I got this overwhelming dizzy sensation and I felt like I was going to faint. It lasted a good part of the day. The second major event happened while I was teaching (I’m a college teacher). I was writing on the blackboard, turned around to look at the class, and then began feeling dizzy. I had to just stare at my lecture notes for about three minutes until the intensity of the dizziness subsided. However, the dizziness didn’t go away. Lessening in intensity, the dizziness remained for the rest of the day.
Since these two episodes, I’ve experienced dizziness nearly every day, with the exception of about a month or so when I didn’t feel it. I’ve found that my symptoms are worse in the morning and early afternoon; I rarely feel dizzy in the evening or at night.
When I went to the neuro-opthamologist, I spent an hour describing my symptoms to him, and he concluded that I probably have either migraine- associated dizziness or Miniere’s disease. In a week I’m going to get tests done for Miniere’s disease (audiogram, Vemp, etc). He told me that if the results of these tests come back normal, then he’s going to begin treating me for migraine-associated dizziness.
What kind of treatment options can I expect to consider if my doctor diagnoses me with MAV? He mentioned there is medication I can take and that the medication takes a couple weeks to begin having a positive effect. Are there common meds that people with MAV take and is it something I can expect to take for the rest of my life? Also, through the forum I learned that MAV may be treated by changing one’s diet. Does this just consist of figuring out and eliminating one’s trigger foods, or are there common foods that tend to add to MAV?
Thanks for your help.
Hi All!
I just found this site last evening out of desparation as I guess is the case for most!
I am a 45 yr old, white female with one 12 year old child. My great grandmother and mother suffer from hormonal migraines. My maternal uncle also suffers from migraines (takes Inderdol with success) and just recently suffered a bout of vertigo.
I started to experience slight dizzy spells in my early twenties thinking they were related to a car accident I sustained at age 19 when I hit my left ear on the steering wheel. I underwent an MRI that showed everything was normal. The dizzy spells came and went and really were not that bothersome.
The migraines started around 34 after the birth of my child. Sometimes with auras, sometimes not. I’ve tried everything! Diet, exercise, acupucture, every kind of medication - no real success. The migraines are hormone related and I’ve had some success treating them with bio-identical hormones which I’ve taken for over three years. I used to take 12 Imatrix a month - now since taking hormones - take maybe one on the average for migraines. The problem is that the veritgo has now increased to where it has interfered with my life. It appears that even though I appear to have no pain with the migraines - I still may be having “symptomless” migraines and therefore suspectible to vertigo. The vertigo can last from 5 minutes to an hour depending on the severtity of the attack which seems to depend if my left ear will “pop” or not! Attacks can appear to be unprovoked but can be brought on by straining, exercising certain ways, holding my breath, getting up too quickly…
I started on Topamax this week. I’m contemplating giving up the bi-identical hormones although I feel so much better on them - I’m wondering if they are the cause of the worsing of the vertigo - the time frame is right. Anybody got any clues?
This is added a week later…I had to stop the Topamax - now I know why it’s called “Dopamax”! I could not put two words together and felt like I was getting very depressed. I failed to mentioned that I underwent a battery of tests last year and was sent to a specialist who dx’d me with Menier’s but wanted me to see a Neurologist as he thought my migraines were somehow connected. I finally made the appointment for the end of this month. In the mean time I’m taking a good look at the sodium intake in my diet…
First I want to thank Adam for allowing to post my story. I am hoping somebody can shed some light on my issues. I wrote to a nationally known ENT with my symptoms and he told me to join this forum site.
I am 49 years old and married and try to deal with what is handed to me each day.
About 5 years ago, a loud ring went off in my head and since that day I’ve had ringing in my left ear. I’ve had off and on dizzy spells for at least that long. I still get the ring in my head sometimes but it goes away in a few seconds.
I also have newer symptoms of loss of focus/forgetfulness, aches over my eyes, off balanceness/ dizzy, somedays I feel like I got in between the eyes and other days I have a “swishing” sound on my left side when I shift my head, that is on my dizzier days. Tylenol calms it down but I still feel the ache.
I do have some days when it isnt so bad but most days I suffer from one or all of the above symptoms. I have lived thru every diagnosis dr’s have given me. I have been to 2 sets of ENT’s that did Cat scans and MRI’s in search of my problems. They all came back negative. I went thru a series of allergy tests that proved I might be allergic to dust and/or mold.
Some days I get some nausea with my very bad dizzy days. It usually subsides after a short time. I’ve had fuzzy lines in my eyes once before. I’ve had times when I am looking at the words on the computer and I see them but they look almost at a distance or off somehow. I also have a tough time carrying on conversations at length with people face to face. I lose my train of thought.
I am trying to find that “one doctor” who can tell me what it is that is going on inside my head and why I feel this way all the time. There is a show on now here called “Mysterious Diagnosis” and I feel like asking them or anybody for some kind of leads to talking to the right person who can assist me in my search for answers.
I have a lack of quality time with my 8 yr old twins and would like to get at least somewhat normal again. I do have better days but mostly it is just coping with the syptoms I have each day. I would appreciate any input as to what anybody can tell me out there. I am not sure if it is MAV but I am willing to listen to anybody.
Thanks again to Adam and I hope we can discuss anything out there. I am a good listener too if anybody wants to ask me things.
Thanks and I look forward to talking to you! Gary
Hi All I am new to this board but see a lot of familiar names. I am a 26 year old Mom from Maine. I have a 4 1/2 year old daughter and a 1 1/2 year old son. I am a stay at home mom. I first got dizzy in March of 2007. I got diagnosed with VN. Did VRT’s and wasnt getting much better. I went to a second ENT a few days ago and he said I have migraines which is why I am still dizzy. I am not sure if I had VN first and it turned into MAV or if it was MAV all along. For the past few months iI have been having a lot of headaches and a few migraines but I have two small children at home so I thought it was just normal and they didnt make me more dizzy etc so I didnt think there was a link. Also had a few times when my eyes would go funny like I had a prism of flashing lights in a semi circle in my periphial vision. I have been severly med sensitive since I have had my son so I am only on Valium right now but my anxiety is widly out of control. As for the migraines I have only started the migraine diet yesterday and also cutting out sodium cause the ENT thought I had some Menieres symptoms. So any med advice from med sensitives would be great…
Hi Gary and D.dizzy,
my name is jenny, Ive been staying off the computer latley as it dosnt help my symptoms.
I just wanted to say hello.
I dont have any answers for you, I’m also trying different meds at the moment with no good results as of yet.
even though some of us have mav on this site , that dosnt mean we dont have more than one illness.
I believe I could have some neck issues as well as mav.
anyway all the best to you and feel free to say hi on my private email.
jen.
Thanks Jen for coming on and saying hi! I look forward to talking to you and to anybody out there. It seems that we just cope with this stuff. I have been trying diff ways to deal and some are good and some arent so good. I do have a sense of humor so that definitely helps. If there’s anything you wanna talk about or me listen to, talk to me.
I wish the best for you too. I think these forums are good because I think that we think in our minds that we’re the only ones that have this stuff but there are others. I try to stay positive because I have 8 yr old twins and it wouldnt be fair for them to see me nasty and mean all the time. In turn, they are a joy to be around everyday.
I just got word from another PA that knows a well known ENT that took diff fellowships and he wants me to do more serious MRI’s of diff areas and study them. He is talking either MAV or some other sort of Vestibular issues. I just want an answer once and for all.
Thanks again Jen and hope to hear from you! Take care!!
Hi again Jen- I forgot to ask you- you said you were having poss neck issues? What sort of neck issues are you having?
Hi Gary and D.Dizzy
Read your posts, sorry to hear you’re both suffering from this awful condition, it’s a hard one to explain to those who don’t suffer from it and I’m sure I would never have understood until I went through it myself. I joined around Dec 07 (I think??) and really have benefited from the sharing of information re specialists and medications. Each time I visit my neuro, I can now be involved in informed discussions about my condition (MAV) and have a little more control over my medication with much, much more understanding.
I’ve been suffering with MAV since March 06 and am just starting to change my medication to see if I can get continued improvement as I’ve reached a bit of a plateau. I can’t offer you great information, there are those on this board who are really impressively informed, but I offer you support and well wishes for recovery. I can say however, that neurologists that specialise in this field of dizziness/balance and who are aware of the condition (MAV), are the way to go… Don’t give up until you find one! Diagnosis and then the right treatment are your first priorities and in the meantime, discussions amongst forum members about your treatment may just give you more comfort.
kind regards, Judy
Hi and thanks Judy for talking to me. It sounds like you have a handle on your condition. It is true that people dont understand until they experience this kind of stuff. I remember when I first started getting panic attacks a long time ago and my Dad thought I was crazy. Then, one day he called me and asked me all about panic attacks and what they feel like because he was having one. It is tough and I know I’ve lost at least one job because of my dizziness and lack of focus.
I am going into another stage where I am getting another set of CT scans completed on diff areas then reviewed by a specialist and then a neuro. I am at the point where I just want results now.
I know there are some informative people here and I appreciate it. I also appreciate the people that just tell their stories so I dont feel so out there. You think you’re the only one until you join forums like this, that is a good thing.
Judy, I hope you keep in touch and share more of your symptoms and what happened before the diagnosis and treatment. Everyone has stories. I am so interested to hear them. Thanks and take care!!
Hi from another ‘newbie’. Info on me: Started having vertigo ‘blips’ late in 2005. Ended up in hospital for a couple days in Dec. 2005 w/uncontrolled vertigo & vomiting. In Jan. 2006 diagnosed by our small town neurologist as having vestibular neuritis. After a couple months all symptoms cleared up & was fine until ~Jan. 2007 when the vertigo started again. Vertigo worked up to 3-4 times a week of 3-5 min. duration. It was like I had serious motion sickness 24/7. Very depressing time for me.
Somewhere during that time I started noticing tinnitus. Nothing I couldn’t live with, but …
Went to ENT who diagnosed Meniere’s - “go on a low salt diet & take this diuretic…have a nice day!” At that same time I returned to the neurologist who didn’t agree with Meniere’s diagnosis (I don’t have hearing loss), but didn’t know what else it could be, so gave me Valium (for the vertigo) on top of the ENT’s diuretic. I then started getting more involved in another website - Menieres.org.
“Something” worked for the next 4-5 months (probably the Valium) & I felt a lot better. Then vertigo started coming back … I felt dizzy 24/7 & could barely keep anything in my stomach. Periodic severe headaches, but the vertigo was worst of it. It was at this time that I started wondering if Meniere’s was the right diagnosis - it just didn’t fit. I tried homeopathics … then chiropractic … neither helped, although the chiropractor claimed he would ‘heal’ me if I just let him continue his treatments (popping my neck & back three times a week). Oh & I have a history of ‘classic migraines’ as diagnosed by my primary doc in ~2000. When my primary doc got wind of the neck-popping, he strongly urged me to stop immediately … which I did. (We have an established patient-doctor history & I trust him completely.)
Anyway, local ENT didn’t know what was wrong … but was too arrogant to admit it. I asked him about MAV but he brushed off the question, so after a four-month wait, I was able to see a neurotologist associated with Barnes Hospital in St. Louis who confirmed that I had “Migraine Associated Dizziness” - he doesn’t call it MAV because the Dizzies - in his opinion - are more prevalent.
He prescribed Nortriptyline (Pamelor) first but it made me too jittery. I’ve been on Verapamil for a couple months now and have felt considerably better, although lately my headaches are coming back. I tend to squint at my monitor a lot at work & admittedly I don’t follow the Migraine Diet as closely as I should. I’m also fighting high cholesterol - threat of drug-interaction has forced me off Zocor or any of the other statins, so I’m trying to fix the cholesterol thing the ‘old fashioned way’ - exercise & eat right - yuck. I hate oatmeal!!
I think my biggest complaint about all this stuff is not being able to drink coffee anymore :roll: Gosh I miss coffee … & pizza … & chocolate …
Anyway, that’s me. I know a few of you already from “that other” forum. Lots of very nice people over there, but I’m hoping I’ll fit in a bit better here because of my symptoms & diagnosis.
Oh, I’m a peri-menopausal female (makes me even more screwed up!), Christian, have two extremely perfect 
Hi Joy- It is good to hear your story but I bet you’re not too happy with it. It isnt easy going thru this stuff but on here you find there are more people who have some or all of your symptoms and it makes it a little easier. It sounds like you’ve been to all the right doc’s.
I cant believe the amt of doc’s you have to go to just to find out something with your head. I have spent numerous amt’s of co-pays and spent many many hrs in PT’s offices and ENT’s offices and I still dont have a diagnosis. I am going back soon and they’re doing a series of tests to try to finally find out what is going on. If you read any of the other articles you’ll see what my symptoms are and they are naging and getting harder to live with. I have 8 yr old twins and it is harder and harder to enjoy them like I’d like to with them. They are so fun and I just dont get the same effect as I used to with them.
I hope you can find some bits of each story and have it help you and you can feel a little better about your symptoms. I wish you good luck and hope to talk again!! Take care!!
Hi everyone. I definitely rubbed some people the wrong way so I thought I’d start back over from the beginning with my story. I have a feeling that my I was headed in this direction for a long time. I’m freaked out about all this, but at the same time, it probably took me 1-2 years to get to this point, and I’m sure it will take me just as long, maybe a little longer to finally get out of it. But anyway, here it goes:
I have always been in good health, but a VERY anxious and nervous person. Suffered my first series of panic attacks in 1998 which were so bad, I was prescribed Paxil. I got better on it, and 2 years later, I went off it. I was pretty ok from there on in, but still suffered from low-grade anxiety, worry, and a lot of stress. Just being myself was stressful, let alone any particular situation that added on top of it.
In March 2007, I had a bad headcold. Every time I get a headcold, after my sinuses clear, my ears get clogged for a couple days. It’s guaranteed. Anyway, my ears were clogged, and I tried to adjust my ears by pinching my nose and blowing, and the pressure got worse in my right ear but I was still on my feet. Well, I sat down to use the toilet, and within 30 seconds, the room started spinning slowly, getting worse and worse until I was on the floor. I didn’t start vomiting right away. I called 911 and they came and got me. By the time I got to the hospital, it was non-stop vomiting until I was dry heaving, and I had bad nystamus (eyes vibrating which everyone could see). I was diagnosed with Labrynthitis. It was the worst case they ever saw, according to the ENT. I was in the hospital with acute spinning vertigo for 4 days straight, where I was kept heavily sedated because I couldn’t even open my eyes. After 4 days, the spinning stopped and I was sent home. For 2 weeks, I had residual dizziness that got a little better each day, and after 2-3 months, I was perfect again. It was a nightmare. I told the ENT I was afraid of that happening again, and he told me it was remote that it would happen to begin with, let alone again. That attack took 30% of the hearing in my right ear in the high pitches, and left me with some nagging tinnitus, but nothing I couldn’t handle.
I went about my life thinking that the worst was over. I am a pianist, but between April and November, I run a haunted attraction and do heavy building in spring and summer, set up in September, and run the attraction in October. It was a great season. I was enjoying life. However, by November, something changed. I started to get more panic again. It was as if I had nothing to do now, and nothing to focus on, and I got incredibly stressed by it. Between December, and late January, I had a series of intense stressful situations land on my plate all at the same time:
-
I was falsely accused of something that could have sent me to prison for 5-10 years, and took about a month of daily worrying to resolve. Finally, the person was caught lying, the real person was found, confessed (non violent situation), and it was proven that I didn’t do anything. I was off the hook. But it took its toll on me and my family
-
I was in need of money, and sold an antique I owned for $10,000. The transaction was through Paypal. After the transaction, and the buyer got the item, Paypal froze my account which locked up my money. I was told the transaction was “suspicious” because it was for such a high amount. They requested all sorts of documentation, tracking info, and it took many emails, phone calls, and talking with the buyer to work it out. They told me at one point that if they couldn’t verify the sale, that they would refund the money to the buyer. So the buyer would have all my money, AND my item. I would then have to trust that the buyer was honest enough to get the money back to me somehow. It was extremely stressful, and actually resolved the same day I was hit with this condition
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In an effort to raise some additional money, I arranged to broker a deal for an original movie prop from the film “SAW 4”. It was a $15,000 deal, that would have helped me out tremendously. Every day it was “we’re on”, we’re off", we’re on", we’re off, and it was constantly being given to me and taken away. It took over a month of daily stress and effort to make this deal happen, which finally happened January 6th, 2008.
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At the same time, my son is disabled, has a tracheostomy, and his outcome is not looking so good in the long run. I’m constantly at the doctor with him. On January 22nd, 1 day before symptoms started, I got a flat tire in the parking lot of the doctor’s office but my jack was broken. It took me 2 hours out in the freezing cold and wind to fix it. I was screaming, yelling, and freaking out, because my son needed to get home to get back on his machines, which he needs to breathe. He can’t be off them more than 2 hours a day.
Finally, January 24th, it hit the fan!!! But the day before, I woke up in the middle of the night, got up, and felt slightly dizzy but just dismissed it. But when I got up on the 24th, I immediately had the following symptoms:
- Slight nausea
- Constipation
- Unsteadiness and “dizzy”, but not true vertigo
- The appearance that all stationary objects are shifting and moving
- “Spaciness”
- “Fatigue”
- Extreme light sensivity
- Extreme sound sensitivity
- Increased dizziness with head motions, but not while driving
- General intolerance to motion
- Inability to hold gaze on an object. Eyes would just slip off
- When closing my eyes, my eyes would feel like they are darting around in the back of my head
- When closing my eyes, I would see flickering lights
- Dizziness would not go away when laying down, and would wake me out of a sound sleep
- A sense of fullness in both ears. Popping them doesn’t help.
- Vibrational feeling in the back of my neck if I exercise or strain.
Naturally, I thought something was TERRIBLY wrong. I didn’t waste any time. I was in my GP’s office that afternoon. He diagnosed BPPV, gave me antivert and sent me home. Needless to say, it didn’t work. The next day, feeling even worse, I took myself to the emergency room. Blood work and CT scan of brain were normal. They threw their hands up and sent me home. I assumed that I was having an inner ear problem so I made an appointment for the ENT on monday, just a few days after symptoms. No hearing loss, so he daignosed me with Miniere’s, put me on low salt and diuretic and sent me home. After 2 weeks, I got just modest improvement, but I think this was just “time”. Still, I don’t add salt to my food just to be safe. It’s not healthy anyway. After 2 weeks, I had the following symptoms:
- Feelings of rocking, swaying, unsteadiness 24/7
- All stationary objects move left, right, up and down unless I am driving, then it goes away
- Light sensivitiy
- Pressure in both ears
- Fatigue
- Increased Dizziness with any kind of exersion, even walking
- Extreme sound sensitivity
However, my ability hold gaze on an object improved, the nausea went away, constipation went away, my eyes wouldn’t dart around when my eyes were closed, and the dizziness would not wake me up out of a sound sleep. I realize now that this was just “compensation” by my brain. But unfortunately, that was the best I could hope for. Nothing else has ever improved since Mid February.
Because of the light sensivity, I went to the opthamologist. He couldn’t find anything wrong with my eyes, but suggested I see a neurologist because my optic nerves were slightly buldging. The possibility of “Pseudotumor Cerebri” was diagnosed. 2 weeks later, I went to the neurologist, and he practically laughed at me. Doubted the miniere’s diagnosis and said I had no increased pressure in my brain. Up until that point, I had freaked myself out about the Miniere’s after looking up what that condition can do to people. I was relieved and went home. BUT, I was still having the symptoms.
I ended up in the emergency room again due to exercise induced dizziness. This time they ordered a Brain MRI. Nothing! All normal. Repeated blood work. Normal. Sent me home again.
After searching the internet, I discovered that a “neuro-otologist” might be the way to go. I found one in my area and went. But before I went, he ordered an ENG test for me to have before I came in to see him. So I did it, and went to see him. He told me that my inner ear function was quite good, and that he believes this is migraines. He gave me topamax. But, it made me so tired, I stopped it after 2 days. I never gave it a fair chance. This was around Mid February. Little did I know, I would waste the next 2 months looking for something that didn’t exist. After explaining to him about the valsalva induced dizziness, he decided to get a CT scan of my temporal bones, and thought I might have SSCD (Superior Canal Dehisence). That’s when I made an appointment to go to Johns Hopkins to see Dr. Minor, who discovered SSCD. They did a VEMP test (which can confirm the diagnosis of SSCD), repeated the ENG, and did some other inner ear testing. Diagnosis - MAV or Mal Disembarkment, or both. But he said it is definitely something migraineous. But, just to make sure, he ordered a special brian MRI to rule out Psuedotumor Cerebri, a full spinal CT scan, MRA’s (angiograms) of the blood vessels in my neck and brain, and an MRI of my inner ears just to make sure blood flow is ok. I go for those testing on May 2nd. Unfortunately, the migraine doctor can’t get me in until August.
So, as it turns out, it was migraine all along, brought on by tremendous stress, which put me over the edge from a brain chemistry standpoint. Since then, I have been crying daily, having huge anxiety issues even further, more panic, etc. I thought I had MS, alztheimers, tumors, all sorts of deadly diagnosis’s and I convinced myself of it. Thanks to Julie’s recomemndation of the book “heal your headache”, I understand more completely how this happened to me. I haven’t given myself a moments peace since, and I need to start doing that if I am going to get over this.
I went back to my Neuro-otologist and told him what Dr. Minor said. I also told him I can’t get into see him until August, so I asked if he could prescribe something else for the migraines. He gave me Elavil, saying it would help me sleep, help the depression, help the anxiety, AND help the migraine. Sounds good I thought. Haven’t started it yet. Why? I’m afraid. But I’m going to give my first shot tonight. I just didn’t want to take it over the weekend, where I can’t get a hold of a doctor if I have a problem.
I have to say, it’s amazing what stress and anxiety can do. If I had known this could have happened, I would have gotten myself in control a long time ago. I have never had a problem with motion, migraines, or really anything. I am confident that once my brain chemistry is back to normal, that I’ll be free of this. But who knows how long it will take. It took me a while to get like this, it could take a while to get out of it. But I am not crying any more, not lashing out, and I am trying to de-stress. Xanax helps somewhat in the meantime. Anyway, thanks for listening, and I’ll be sure to follow up here after tests are back when I have been on the Elavil for a while
Rich
Hi Rich,
I’m sorry you’ve had such a lousy time of it,
It been a long road to diagnosis for most people on this forum,
If we didn’t have anxiety and or depression before, some of us defiantly acquired it along the way.
I kept saying, “ I’m not depressed”, but I recently found that I was suffering depression; I keep thinking what came first the chicken or the egg?
Migraine disease is genetic, there’s nothing one can do about having it, anxiety issues depression ect can often be co-morbid from what I’ve read.
That doesn’t mean we can’t eventually find a med that “will” be tolerable enough for us to lead a normal life.
Taking meds , has been a hit or a miss for me, some have side effects that might lay you up for around a month , until they start to work,
Some don’t have any SE . I took elavil for 7 weeks and elavil made my symptoms worse, Dr said ok this meds not for you.
I consider my self very lucky, my husband made me give up work, after being rushed to hospital for a minor heat problem, so I have the time to try meds without the distraction of having to hold down a job as well, I know if I had to work right now I’d be UP !!! CREEK, without a paddle.
A bit of advice from me is, try to stick with a med for at least 3 weeks to see if it settles, I’ve just started tying neurontin and have had no side effects at all, it has just calmed me down and helped remove some of the Mal de debarquent type symptoms.
Anyway Rich welcome to the support group, I know you’l find some amazing people with a wealth of knowledge, and wonderful support.
I hope you find something that gives you some relief.
Ps , I’m a singer songwriter , who’s Job was as a wedding singer, sounds sad ,I we raised our daughter and have had a wonderfull life , all due to the music industry , I loved my work and miss it terribly.
All the best to you and you’re family Rich.
Jen from Australia.
Thanks Jen. You mentioned that some drugs don’t have any side-effects. Which ones lol? I’d like to try THOSE lol. What starting dose of Elavil did you take? I’m going to cut my 25mg dose in half, and start with that for a couple day, and then increase by 5mg at a time. I’m very sensitive to meds but I have to do SOMETHING. I COULD survive like this, without meds, if I absolutely had to but it would be no life at all. Just existance. From what I understand, the drugs for migraine are all very safe drugs. It’s just a matter of what works and what doesn’t I suppose.
Was your heart problem caused by one of the meds or did you just have an isolated heart problem?
Rich
Hi Rich, as for my heart it’s super ventricular tachycardia, it’s an electric problem of the heart lots of people have it and it’s controlled by blood pressure meds, or can be operated on, if it becomes too hard to control, I don’t mind the meds for my heart condition as they’re also used in some people for migraine prevention.
verapamil takes about 1 week of SE each time I upped my dose, the SE weren’t bad, just made me feel sleepy, with some small head aches controlled with ibuprofen, the neurontin, for me has’nt shown any bad SE’s but then I’ve only just started them and it’s too early to tell, as I up the does there could be more SE’s.
I’m only on 100mg a day as of yet.
Beta-blockers and calcium channel blockers work for some people.
A couple of weeks back before the neurontin, I was trying xanax as well, I found it a magic pill but soon realized if I didn’t take it for a day my symptoms were much worse than normal.
I tried 25mg of elavil.
Every body’s different with meds, but some are gentler than others.
By the way Rich, I’m just a beginner when it comes to meds, but there are a lot of other old timers here, that really know their stuff.
Anyway Id better go now.
jen
Hi. I’m new to this site. I have suffered from classic migraines with visual loss for over 20 years. I never knew I could be given medication to control my migraine attacks. About 2 years ago my weekly episodes just stopped. I thought that was wonderful! A year ago this past March I was hit with my first ever episode of vertigo. A week later it was almost constant and did not let up for over 6 weeks. Since then I have had one other severe attack of vertigo that lasted a week. In between these episodes I have had a least 1 epiosode of vertigo a day.
The other symptoms I have are tingling of right side of my face and right arm. muscle twitches here there and everywhere that can be constant and at any time of the day. Feeling off balance, walking like I am drunk, slurred speech, muscle spasms, blurred vision, congnitive confusion and most recently part of my right foot and toes has gone completely numb for about 3 weeks. It is now intermitant.
This is the second time in a year I have been told this could be MAV. The first time they tried me on Amtrip. for several months that did not help with the symptoms. I am to see my doctor again next week to discuss meds options.
First I wanna say hi to JenD and thank her for sending me the private tape on the episodes from a news report she saw on her sickness. It must be scary for you at times but it is good if you have support and people who understand now. I tried to send you a msg back and hope you got it because I appreciated it. My comp is about 20 yrs old and I am not sure but I mighta erased the msg instead of it going to you. I wanted to keep in touch though.
To lynxgal, I am sorry for the way this has played out for you. You have some of the same symptoms that I have. I had another MRI screening yesterday with the contrast. I’m not sure when to expect results. I have forgetfulness and confusion and off balance tendencies also. It is just something to cope with right now in hopes that better days are coming. I do hope it isnt serious like a tumor. I have never had a dr put an exact diagnosis on it yet.
Just know that there are people out here that are wishing and hoping good things for you. I hope you have support because that is needed.
JenD, I read that you arent working. That is good and now you can try stuff without having to worry about getting up and wondering how you’re going to feel for work. I too have some of the symptoms you were talking about. That off balance feeling you have even though you arent sailing or riding is very annoying. My wife gets it but I dont have the supporting cast that you do. I am just kinda crazy to them. I know what I feel and unless you feel it too then you dont get it. If they dont try to get it, they stay away and think I’m a nut. Oh well! I still have my wife and 8 yr old twins that support me.
I hope you get relief from these symptoms of yours. It is very annoying and it affects your days and quality of enjoyment with your families!
Take care all!! Gary