Vestibular Migraine - dizziness, confusion

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thornappleriver
New Member


Date Joined Nov 2006
Total Posts : 12
   Posted 11/6/2006 9:10 AM (GMT -6)   
Just thought I would throw an update in here.

I get migraine headaches; my triggers seem to be alcohol, altitude, the solanaceae plant family (tobacco, tomato, potato, etc.), stress. I have not identified any others, even with an eight week elimination and re-introduction diet. If I avoid these triggers, I only get about one headache every three years. Usually I get one if I go hiking in the Rockies or something else that makes the trigger unavoidable.

The headaches are in a band on the back of my head at the base, on both sides equally. I never have one-sided headaches. They throb horribly, are intensified if I walk upstairs or do anything with physical effort, and on a scale of one to ten for pain I would put them at the seven to ten range. Sleeping does not make them go away; they have to run their eight-hour course, I have to throw up, and then within twenty minutes of vomiting they are gone and I am euphoric for about 24 hours.

I also get painless ocular migraines with scotoma. The experience is like looking through shimmering water, then I get tunnel vision and areas of blanked-out sight which gradually comes back within an hour. I have absolutely no clue what triggers that.

However, I seem to get painless vestibular migraine no matter what I do. I used to get them a few times a month and didn't know what they were; just knew I was ill enough to have to cancel my plans for whatever I had planned. Now they seem to blend into one long episode so it seems almost constant. I have tinnitus, sensitivity to sound and light, motion sometimes makes me ill (by the way, those animated ads for topamax make me nauseated), and I am constantly dizzy. I have been told by a neurologist I am a classic MAV case. It never dawned on me this was migraine but it makes perfect sense.

They have all the symptoms of migraine without the pain, and with short bursts of vertigo added and at this point, constant dizziness. I also have chronic inner ear inflammation that shows up on MRI (cochlea, labyrinth) and hideous tinnitus and ear beeping, muffled hearing, hearing loss. I feel like I am always walking around on sofa cushions. Physical therapy (VRT) helps with the balance issues.

This all got worse during perimenopause and constant after menopause.

All I want to know is....how to manage them so I can get my life back. My husband wants to know this, too...and so do the people I work for. They are all as worried as I am. This pretty much sucks. And so do the drug solutions, as far as I can see. The most common drugs make one stupid, bald, and sleepy. What's the difference from dizzy, not bald and sleepy?

I want a better solution.

Spike0124
New Member


Date Joined Oct 2006
Total Posts : 9
   Posted 11/10/2006 6:04 PM (GMT -6)   
thornapple, i would reccomend that you stay away from topamax altogether whether or not your family doctor advised you to take it. i reacted quite severely to it and lost my ability to read(accomodative focus), and was generally a drugged up zombie. one day i was looking for where i parked my car for about 40 minutes, and i got a phone call from my sister who told me that i had not driven to school that day. that type of thing was a regular occurance and i often forgot words or ideas that i was about to say. i couldn't remember what car keys are and had trouble asking for help to find them because i couldn't explain what it was i needed help finding. i found myself in rooms with no idea why i was there, so i would often just grab whatever i could (like if i was in the kitchen and didn't know why, i would get a glass of water to make the trip to the kitchen worthwhile).
it sucks about your job, i had to quit my job because i did manual labour, and there was not really a chance in hell i could continue. hopefully you have an understanding boss. also i could not get worker's compensation because my condition was not (as far as anyone can tell, though it started while i was at work) caused by my work.

jpitt, i have the absence of tinnitus in my ears and any related hearing problems which negates my condition as being meniers.

i have started amitriptyline. according to the doctors amitriptyline does not cure migraines until enough of the drug has built up in the body, which is usually ~3weeks into taking the target dose. i am at my target dose of 30mg and the side effects, though they include occaisional hallucinations and somnulence (lasting for about ~20hours), are completly benign compared to what i experienced with topamax. i have had three migraines since reaching my dose of 30mg but it has only been a week so i hope that the migraines will stop soon. also i got the start of a common cold which put me out of commision for a few days but i am feeling a bit better now.

my insurance plan is very good and i got an appointment with a naturopath who was reccomended to me by three seperate people who have no affiation with each other, two of them who had vertigo that was cured by the naturopath. the naturopath is very expensive, 140$/hr and 280$ for the first visit regardless of the time. he was also very booked up so my appointment is on nov. 30th.

anyway, thats how i've been doing. how are you all holding up?

brooklynpip
New Member


Date Joined Oct 2006
Total Posts : 4
   Posted 11/11/2006 11:06 AM (GMT -6)   
Hey everyone! Was reading the board and hope someone can give me a little insight to what I might have. Back in 1994, I was having these headaches....pain in the temples on both sides..felt like my head was in a vice. I dont remember if I had any dizziness....had a little focusing issue with my eyes though. I felt a whole lot better when I would lie down straight. Anyways, I went to the ENT and eye doctor. All came back ok. I finally went for a a cat scan. That came back ok. Somone had told me to see a chiropractor. I started going and like magic...everything disappeared! I stopped going in 2001. Fast forward to a few months ago. I started getting a weird kind of feeling...loss of balance but it felt more like a shock to my body. Lasted only 2 seconds ,if that much but would come and go. I then started getting heachaches on both sides of my temples....more pronounced on the right side. With a pain in my right ear and a liitle coldness on my right side of my face ( near my ear). I went to the chiropractor and he adjusted me a few times. He said it wa a nerve being compressed. The pain and the dizziness went away for about 2 weeks. Now everything is back including a heaviness in the back of my head on both sides and some pain down my neck. A freind of mine told me that this sounds like what she gets and she was diagnosed with tension headaches. I have been under ALOT of stres over the past 6 months...financial problems, I have an autistic son, elderly parents whom I worried constantly about. My temper has been nothing but nasty over these past 6 months. Does this sound like tension headaches? I went for an ENG test which came back ok...I could not finish the last part (the blowing of cold and hot air in the ear because it made me EXTREMELY dizzy). Vision was checked, ok. My chiropractor says that I have VERY bad scoilosis and have some compression of some disks in my spine and also have spurs and fractures in my neck. Everything is all off and the symptoms I have are common when a nerve is being compressed. That is fine...and I would believe him but what about the weird loss of balance I feel throughout my whole body? Seems more like a shock to my upper body. I know this is very long and I do apologize and I also thank you for reading it. Its very frustrating when you cant seem to get the right diagnosis. Any response would be GREATLY APPRECIATED!!

thornappleriver
New Member


Date Joined Nov 2006
Total Posts : 12
   Posted 11/11/2006 7:55 PM (GMT -6)   
Spike, thanks for the feedback. I have not upped my dose from 12.5 mg so far. I am just too leery of side effects.

I have a friend who was on Neurontin for a while, and he is a college professor. He had similar terrible side effects and went off it--he now calls it "morontin."

So we have stupamax and morontin. I wish we had "einsteinamax" to cure our symptoms, don't you? Everyone would take it. It would become a street drug, like crack.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 11/12/2006 9:52 AM (GMT -6)   
Hi Brooklynpip,

Sorry you are having such a tough time, have you seen a Neurologist? If not I would suggest you do as it is not only the head that they deal with it is the whole brain/spinal thingy for want of a better phrase - sorry!! Maybe they would be able to identify more closely what is going to be the best way forward for you - hang in there!

thornappleriver - I love your sense of humour, yes it would be good to replace dopeymax/stupamax and morontin with einsteinamax - think of the money we could make!!! lol

take care

Ann

Nicky (coquitlam55)
Veteran Member


Date Joined Jul 2005
Total Posts : 505
   Posted 11/13/2006 10:22 PM (GMT -6)   

Hi brooklynpip,

Welcome. I'm sorry you're having such a tough time. All of the symptoms you have could be a migraine. I have experienced a lot of the symptoms you have described. I concur with Annuk, the best person to diagnose your problem is a neurologist.

I've suffered from really bad migraines for over 10 years and I've been to chiropractors and naturopaths who promise they can fix them. It's a compressed nerve, scoliosis, candida, an allergy to this or that. The truth is that they are all unable to fix the problems for the long term.

I am seeing a naturopath right now who has had the most success of any alternative medicine type that I have seen, but even he is getting frustrated. It's been three months and I can still experience a headache for a whole month given the right circumstances.

Try not to get too frustrated. Many people will tell you they can fix your headaches or will diagnose your headaches. Just because stress triggers your headaches doesn't mean it's a tension headache. Stress triggers my migraines. They may start out as tension headaches but in my case they often end up in a migraine.

Good luck. Let us kno how it goes.


Nicky
Co-moderator Migraine Forum
 
I'm working everyday to overcome the pain and depression that comes from my chronic resistant migraines.
 
 


Spike0124
New Member


Date Joined Oct 2006
Total Posts : 9
   Posted 11/18/2006 6:15 AM (GMT -6)   
thornapple, i had started at 25mg, but it had affected my vision way too much and i could hardly see, so i got a new prescription and went down to 15mg and then moved up slowly to 100mg. every time i increased the dose the side effects got worse, but then leveled out and eventually improved slightly. the only problem was that my neurologist wanted me at a dose of 100mg and i had to continually increase my dose.

are you continuing to work (or whatever it is that you do)? i have basically stopped living my normal life and am having a hard time dealing with the fact that i can't do anything. its kind of depressing thinking about all the time i am wasting waiting to see if my symptoms will improve, especially when they do not. does anyone have an advice for dealing with this type of thing?

the amitriptylene has not had any effect on the vertigo or the migraines. i have had a very bad week with 4 migraines and awful vertigo. i am seeing my doctor on monday and i think i am going to ask for a second neurologist to get another opinion. i am still going to the chiropractor for neck adjustments and accupuncture/accupressure. the naturopath appointment is on the 30th.

thornappleriver
New Member


Date Joined Nov 2006
Total Posts : 12
   Posted 11/18/2006 8:55 PM (GMT -6)   
I continue to work but it is about all I can do. I have cut down on everything else in order to keep working so I have no life other than work and my household is a shambles. Basically the symptoms of the vestibular migraine are affecting my ability to work (or to do anything), not the side effects of the stupamax.

I find that work takes my mind off how disgustingly tired and dizzy I feel, but I have trouble with nausea, tiredness, and keeping track of things. I keep a written record of things and check it daily, otherwise I would be in the soup. I might as well be at work doing something useful; I feel just the same no matter where I am. If I was home I would be not earning money, I'd be bored, and feel just as dizzy, nauseated, etc. as I do anyway. My hearing is affected (muffled, almost no speech understanding on right side) but I just suck it up and deal with it.

If I avoid my headache triggers I don't get headaches; in fact I have not had more than one migraine headache in four years, but I get these painless vestibular migraines constantly, for days, weeks, months, with all the other symptoms that go along with migraine. This is frankly just as bad, if not worse, because nobody understands it, and it's nice that doesn't hurt, but because it doesn't, they don't take it seriously. Thus one tends to get mis-disagnosed and blown off, and no-one believes you are ill unless you happen to ralph on their shoe. I get vertigo rarely but I have been able to visually lock it down and get it under control. I am very fortunate.

I find that getting out daily and walking for an hour reduces the nausea and dizziness. Luckily I have a dog who makes me do this.

Spike0124
New Member


Date Joined Oct 2006
Total Posts : 9
   Posted 12/16/2006 6:02 AM (GMT -6)   
i am going to update this thread again. no relief from anything yet. i'm going to be trying lyrica at a starting dose of 1.5grams a day moving up to 6-12 grams. i am only trying this because i am waiting on a referal to a new neurologist that specializes in migraines, and i don't want to him to suggest i try it when i could get it from my own doctor without waiting two months. appearantly this neurologist likes to use botox to cure migraines. has anyone had any experience with this?

aussieguy
New Member


Date Joined Dec 2006
Total Posts : 1
   Posted 12/20/2006 3:10 AM (GMT -6)   
My symptoms were usually blurred vision, followed by speech difficulties, followed by pins & needles in my left foot, hand cheek and tongue. In November I started getting dizzy spells for the first time ever. I don't normally get a headache, but if I do it is relatively light and only on one side of the head. I've been getting these migraines a few times a year for the last 10 years. October - November this year I was getting migraines much more often than usual and I got really scared when I started getting dizzy spells in early November, as it had never happened before.

A couple of days after the dizzy spells I had a massage. I don't know what the name of the technique is, but its purpose is to return the muscled to their normal position. It only takes about 15 mins. Interestingly the masseur said that I was in a much worse shape than he has ever seen me. At about the same time I started taking Olive Leaf Extract, going to the gym more regularly and to yoga once a week. I have not had any migraine symptoms since then (touch wood). Not sure if it was the massage, the Olive Leaf Extract, the gym or something completely different, but I thought I share my experience as I have not had to use any drugs and it may give people other avenues to expolre on the way to recovery.

Abbeygirl
New Member


Date Joined May 2007
Total Posts : 1
   Posted 5/3/2007 11:56 AM (GMT -6)   
To All,
 
I am new on this site, and I've seen a lot of bad information on Topamax... just to let anyone out there that is thinking of trying it - it was my saving grace for 5 years.  I suffer from migraines (about 3 a week) and had no side effects from the medication except weight loss and less anxiety.  Unfortunately, after many years of taking it my body got used to it and it was no longer effective.  I know that everyone's body reacts differently, so try it if you need something - you may be pleasently surprised.
 
I am now on Zonegran and have a lot of the side effects that people experienced from the Topamax (loss of words, short term memory loss, STRANGE and vivid dreams)... but it's not so bad compared to the migraines - at least it keeps me working.  I think my dose is going to have to go up, so it may get to a point I cannot take it.
 
I did want to thank everyone here - I believe my husband may be suffering from vestibular migraines - he has all of the symptoms that you speak of.  They have ruled out vertigo and menieres and just tell him they don't know what it is (making people think he is "faking it" and making him think he is crazy).  The episodes are staring up again and he had what I would consider a migraine yesterday (he was never diagnosed but as someone that has been getting them for 26 years, he had all of the classic symptoms).  I will now ask my neurologist about this and maybe convince my husband to go see him - maybe they can find something to help him.
 
Good luck to everyone out there and hope you stay well.
 
Regards,
Abbeygirl.

windrising
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 2/18/2008 4:52 PM (GMT -6)   
I've had my dizziness for a little over a year and 3 months now. I'm miserable! My neurologist said that it's migraines as well. I had a ct scan done, mri, eyes checked, ears checked, had a eng and vng test done to look for BPV, Minere's disease or any vistibular problems, and also did the rotational chair test. All came out clear! So the neurolgist said "you're having migraines w/out the pain" ( I would so rather have the pain!). I'm not 100% sure if these are migraines though. I am dizzy every day! My dizziness sometimes goes away at night and on a good day I won't get much during the day. I don't feel ANY dizziness when I"m moving..like running or doing something really active. But as soon as I stop BAM it's back. I also don't feel it or it's really light after certain yoga stretches. They can't put me on migraine meds b/c I'm alergic to them (just adds to my fun!). They tried Pamelor to stop the dizziness...thought it was working the first 5 days b/c I was feeling less dizzy and then it all came back and hard! My dizziness starts at the base of my skull/upper neck and then shoots through the head to my eyes and forehead. I get very tired eyes. My body has tons of energy, I hardly have any sensitivity to light, no sensitivity to sounds, no pain in my head (would rather have the pain then the dizziness!), tension in my neck and face, pressure in my sinuses and base of skull. Yes all signs of a migraine, but NOTHING working. I've tried so many things to get this to stop. I'm going to be trying some herbal stuff next that got some good reviews on stopping vertigo. I'm not 100% convinced this is migraines. So, I know how you feel! If anyone, out there has any suggestions please please please let me know!!! I'm trying just about anything!

retired
New Member


Date Joined Apr 2008
Total Posts : 1
   Posted 4/1/2008 1:29 AM (GMT -6)   
I was diagnosed with vestibular migraines four years ago, though I had been having spells for years, always was told they were viruses in my inner ear. They got more severe. I saw a neurologist, was referred to an ear, nose, throat specialist at UW-Madison. He made the diagnosis after a series of tests. I have gotten much relief from prescribed medicines which I take daily: lorazepam and verapamil. I also use Imitrex in the form of a nasal spray when I feel one coming on. The symptoms usually go away in about an hour. Before my diagnosis I underwent several sessions of physical therapy for loss of balance. I have studied T'ai chi and yoga for two years and have found both helpful to improve balance and reduce stress. I would often have a spell that lasted for several weeks. The ones I have now are very short in duration. I can identify the symptoms early on. My doctor told me there was nothing strange or unusual about migraines that don't have headaches. I also read about vestibral migraines on the internet and found much information when I was first diagnosed. I hope this helps.

windrising
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 4/1/2008 3:06 PM (GMT -6)   
Thanks for the input. They're doing another MRI b/c the first one was good, but not as clear as they wanted it. They are 99.9% sure nothing is in my head that shouldn't be there, but they want to just do it to ease my nerves, I guess, and to have a clearer one on file. Also, they're having me go through vestibular testing again. Reason for this is b/c they found out I'm allergic to cotton wood and mesquite trees. Well, I started doing some allergy meds and that's seemed to help. I'm working out again and doing my yoga again and that seems to be helping as well. They're wondering if the allergies are doing something to my inner ear, so they want to check them again. First time I was around mesquite trees was in TX and that's when this all started. I have them all around me here in CA as well. My days seem to be less intense w/ the dizziness. I'm sure trying to relax, yoga, meditation, and what not are helping. So, only time will tell.

FrustratedKate
New Member


Date Joined May 2008
Total Posts : 1
   Posted 5/2/2008 3:24 PM (GMT -6)   
I was wondering if anyone ever found anything that helps with the dizziness. I have the exact same condition (Vestibular Migraines) and I have tried them all: the Verapamil, the Meclizine, anti-depressants (Noritripolyne), and Topamaz. It is very rare to find a doctor who actually listens to you. It's so frustrating. I've been through 3 ENTs and 1 Neurologist so far. I just want to scream and say stop giving me migraine medicines when I don't get headaches!
 
I have worked with a homeopath that does a procedure called Craniosacral Therapy which reduced the frequency of my dizzy spells, but I still get a dizzy spell at least once a month that can last for a couple days. I take Lorazapam which helps calm the dizziness, but I still can't work.
 
Help anyone?
 
 

windrising
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 5/2/2008 3:45 PM (GMT -6)   
Well, now they said I am not having vestibular migraines! The neurologist thinks it's muscle/tensione headaches w/out the pain and just getting the dizziness. (gotta love it) They just did another MRI a few weeks ago to make sure nothing was there and all is clear. Also, they're checking my ears again next week to make sure allergies haven't done anything to the inner ear. I am on a med call anatripolyn (spelling?). It's taken at night and doesn't make me feel drugged up. It's actually used for patients that are depressed, but can help in other cases. It's used to help you sleep better. I"m on the lowest dose. It seems to help me sleep at night. I also take Astalin for my allergies. I'm finding that laying on a theropudic neck pillow helps my neck muscles and vertebrea (have C1 and C2 out of alignment) Also, yoga has helped my dizziness and meditation. I've changed my diet a tad and eat more yogurt and what not and trying to see if that helps. I still get the dizziness just about every day, but seems to lesson or go away at times when I am relaxed and doing yoga and stretching the neck muscles. I have a friend that said this happened to him and he had his neck adjusted every day and then did neck exercises to strengthen the neck muscles to keep the vertebrea in. He said it helped get rid of his dizziness. So, I just try to be careful w/ me neck, stretch it and my back and hopefully this will all go away and if allergies are contributing then hopefully when they stop it will stop.

Tinafroggy
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/11/2008 1:37 PM (GMT -6)   

Hi I am new to this forum and I have been told I have Vestibular Migraine.  I have been constantly dizzy for the past 6 months. At first I went to a Chiro and was getting adjusted after that didn't work. I went to a Neur. who specializes in balance disorders and I had to do lots of tests.. Including MRI of brain and MRI of inner ear... all came back fine, so that was good but, it still didn't explain why I am feeling like this. I do suffer from regular migraines about 2 a month but, the dizziness I have is constant not just during the mg.  The doc had me try Vestibular physical therapy for 10 sessions, I saw no improvement. So my last resort was to get on prec meds. He presc. Pamelor to very slowly get to 30mg in a little over 2 months time.  I hate taking anything I had such a bad reaction to Topamax (it gave me gout!) that I really don't want to take anything. So I have not started it yet. I have not seen anyone on here mention this med. so I am just wondering that if anyone has had any relief or could relate to what I am going through. Mine was brought on by using an elevator at my new job.  I had this experience one other time after a cruise but, the dizziness went away on it's own after a month.  I work on the 4th floor so it sucks I have been trying to just use the stairs for months now but, no improvement. Well I would love to hear from anyone!

 


windrising
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 9/11/2008 6:11 PM (GMT -6)   
Hi Tinafroggy,
I def. know what you're going through. I'm sure you may have red my post that's above yours. I'll be on 2 yrs w/ this "dizziness" when november hits. I hate it as well. I also saw a neurologist and he put me on PAMELOR! I hated it! At first I really felt as if it helped. My dizziness seemed to lessen and I started to feel better. But then, when I stopped, it came back. So I tried it again and no luck. I tried it for 2-3 weeks straight. I felt horrible. It makes you sleep so you have to take it like 2 hours before bedtime or you'll feel so groggy in the morning. I think i was on the lowest dose of the meds too. I'm a very tiny person so it may effect me harder b/c of my size, then to someone that is taller and weighs more then me. I would take it about 2 hours or so before bedtime and still felt just as dizzy the next day and groggy. I also seemed to feel like I was getting mood swings and forgetting things. I also felt more depressed. Now each person is different. You may not have any of these reactions. All I can say is try it. Pamelor is an anti-depressant. I am not depressed, but they seem to think I am..lol. I'm not happy nothing has been found to fix this, but I don't plan on jumping off a bridge! LOL They started me on another med, but haven't taken it in a long time. I'm trying to find other ways instead of doping myself up. Its an anitriptoline (not sure if I got that right). It doesn't make you feel groggy. It gently puts you to sleep and is supposed to help relieve stress and anxiety (which I def have) They think this is what's causing it. I don't agree. I think it's something that I may have done during a work out (was a very serious work out person and cardio person) and something that happened to my jaw after tooth work. I've had a few chiropractors suggest this and think this is a reason for it. I do find that yoga helps and lots of stretching and just trying so hard to think positively that it will go away soon. I hope this helps! If you have any questions you can always email me at bagheera21@gmailcom.

kk56sl
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/15/2008 5:33 PM (GMT -6)   
Ok so i'm new to the forum but having symptoms which i think are vestibular migraines and are just wondering if anyone else has had these. I have had vertigo and dizziness going on 4 weeks now, bad enough where i couldn't work or really move from couch without getting nausea. You know the nausea where you be so excited if actually, did throw up. Also, tracing with my vision unable to really focus anything. No headaches but i've basilar migraines in the past. I've had an MRI which shows just a small lesions of ischemia and demyelination, and everyone says maybe MS, but i don't really have any MS symptoms. I have ear, nose, throat and go see neurology in 3 weeks. If anyone has heard or maybe i'm not crazy that would amazing. Thanks

char23
New Member


Date Joined Mar 2007
Total Posts : 4
   Posted 9/22/2008 7:01 AM (GMT -6)   
I have had vestibular migraines for about 6 years the dizzy part is the worse for me.I tried to cut out certain foods i try to stay away from people smoking,perfume,candles that smell and all kinds of cleaning products along with car cleaning products and car fumes but it does not always work for me.I have found out that if someone raises their voice to me and i get upset from that and i get dizzy stress does it for me to.It is hard to live life because all theses things that can trigger the vestibular migraines and its dizziness are part of life you just can't get away from things.I know when i go to bed at night it is hard for me to sleep because you never know which way to place your head on the pillow to keep from getting dizzy.I hate having this and if you are like me people who don't have this do not understand what we are going through and they think we are a little nuts.But we are not i know from this forum i am not alone. cry

heavnlyharmony
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/24/2008 3:20 PM (GMT -6)   
Thank you..thank you thank you! I have recently be diagnoised with these vestibular migraines and they are HORRIBLE! I started having these problems you all mentioned, along with double-vision and muscle pain. They think the dizzy, confusion, etc. are vestibular migraine. I'm greatful for no pain most of the time (unlike right now), but the dizziness is completely disabilitating at times. I'm missing 1 -2 days a week from work and it just seems to be getting worse. I'm VERY greatful to see others out there that know my plight! I'm thankful I've had great doctors that have tried everything they can think of, but meds are just not for me. Topamax was the scariest drug I've ever taken. After a month of being on it, I woke up one day and couldn't talk for about 4 hours...it was like they describe stroke minus the numbness. If anyone finds other non-drug cures or helps out there...please share them! It's getting close to me having to quit my job or go part-time...not a fun decision. I'll be praying for you all. If anyone is interested in a support group online, please let me know!

char23
New Member


Date Joined Mar 2007
Total Posts : 4
   Posted 9/24/2008 4:35 PM (GMT -6)   
Hi sorry to see you are having problems like it do.They put me on imatrix that was awful it make me sick.Right now i am trying Tylenol and Celabrex since i have arithritis in my neck which i have been told can also cause dizziness.Their are so many things that can cause this it is hard to find the trigger.I have the dizziness some times for 3 days never know which direction i will be able to sleep in on my pillow left ,right or just on my back it is awful trying to go to sleep when things spin around.I can drive and sit but if i bend over i am off balance.Went to every dr for tests and then they sent me to a clinic for dizziness and that is when i was told i have vestibular migraines which have been the worse for me this summer i don't know since i have had this for 6 years but at one time i was only getting this dizziness maybe 5or 6 times a year,Anxiety and stress can also cause this also medicines,so you see their are so may things that can give you this it is impossible to pin anyone thing down........You can sent me messages anytime you want i don't know where you live, i am in Pennsylvania.It is good to find others who have the same thing i have.. yeah

heavnlyharmony
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/26/2008 4:28 PM (GMT -6)   
Char,

Thanks for the inspiration! LOL. Anyway, yes, I'm a little over 3 years into this whole deal and I pray I don't have to wait as long as 6 years!!! I'm in Indiana, so a little ways from you, but definately think I need to put my focus into finding support and giving support to make this whole ordeal at least purposeful. I haven't given up on the doctors, but just need to find something that actually gives some positive results! So...join the club :) I think we should make you President.

char23
New Member


Date Joined Mar 2007
Total Posts : 4
   Posted 9/27/2008 7:39 AM (GMT -6)   
I don't think the Doctors can do much for what we have since their are so many things in life that can do this.Like i have told you i find stress and anxiety cause mine at times how in the world can you not ever have stress or anxiety in your life.I have been to every doctor you can think of ear Dr,allergy Dr,nurologist, orto Dr had MRI,XRAY you name it what they came up with was vestibular migraines at the dizziness clinic that i also went to and that is what they told me.I have changed so many things in my life it drives me crazy>I cant go to my daughters house anymore she uses those plug in things that smell and that sets me off at times, i need one of those big masks that they wear when they paint cars to keep all the smells out but i think people would run away from me if they saw me walking down the street like that smilewinkgrin Well write me when you can at least we are not crazy like a lot of people think we are because they do not understand what we are going through.If you would ever like to give me your phone number i have the phone service where i can call anywhere in the states for free let me know and we could talk on the phone if you like........GOD BLESS and have a good weekend......Char

heavnlyharmony
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/29/2008 11:15 AM (GMT -6)   
I would love to chat on the phone, but a little nervous about posting my phone number for all the world to see. Could you send me an email and I will reply back with my number? My email is just like my username here...heavnlyharmony at gmaildotcom.
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