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Any help or advice please- undiagnosed and very dizzy


#8

Hi Natasha
Sorry you have to go through all of this… we can all relate. I’ve not gone through any MS testing, but that is the reason I’ve had CAT scans and MRI’s done of brain, spine and sinuses in the past three years (my dizziness began three years ago). I think that even MS tends to be a diagnosis of exclusion and isn’t as easy to pinpoint as one would think: they’re usually looking for lesions on the brain area but can also be mistaken about that. I would also follow up on the neurotolarynologist who is a specialist ear nose and throat doctor - and if you didn’t do so, ask to have a complete hearing test plus the full balance testing done. They can test for the eye nystagmus, etc. instead of just going in the direction of MS. Also, I can’t speak for you, but when my seasonal allergies flare I have a much more difficult time of it. Also, great suggestion to get a copy of Heal Your Headache by Dr. David Buchholz… that book pointed me in the right direction as well.
Gail


#9

Could I ask one more question, it’s about the vision issue.

I have problems with my vision when I look to the right, well it’s more when I move my eyes to the right. when I am at my dizziest, my ‘sinus’ pressure is always worse and the one sided vision problem is worse too. Sometimes when I move my eyes to the right, my eye drifts off in another direction. If I turn my head with my eyes it seems ok (if that makes sense!)

Does anyone else get anything similar?

Thank you all again, this website has taught me loads

Natasha


#10

I’m not sure what that is or what causes it, or what it’s actually associated with. However, I’ve read about all sorts of vision/visual irregularities that occur with dizziness migraines. With MM (meniere’s) there is discussion around nystagmus but I’m not sure if that is the same thing. Has the neuro actually run other kinds of tests??
Gail
Another GREAT informational website resource: Dr. Timothy Hain’s website: tchain.com/ Full of info. on both Meniere’s and migraines plus the testing info. as well. One of the thing that works against us is not knowing what/how our bodies are doing…kinda scary and frustrating at times.


#11

Hi Natasha,
Sorry you are going through all of this…my dizziness was constant too for a year and a half after a year of on off.
This site is amazing and everyone can help much more than I can , but yes, I haf weird eye things too , sounds similar to yours…and I did a course of visual traning to get this better although in the end they said this was not migraine related…not so sure, but the training at last stopped the eye wandering off.
Wanted to let you know about Doctor Surenthiran , he is a UK specialist and knows all his migraine stuff really well as well as being an amazing sympatheic man. He got me on track with the diet and meds and I have been really well for over a year now.
He practises at the Kent medway hospital Hospital on the nhs if you can get a referal, and at the Bexley Heath hospital privately.

Hope this may help if you want to try seeing him.Good luck,

Penny


#12

Welcome Natasha,
Most of my stuff is visual related dizzines “Off feeling” or feel a bit drunk or high…for no reason…I found when I looked down it was worse. Over time I ended up getting anxiety/depression/insomnia and had a couple of visual auras (for the first time in my life at 42) and my doctor said it was migraine. I thought it was b.s. since I never had any sort of headache or anything my whole life. I think it’s basically just some mixed up wiring in the brain that they call MAV…there is a plethora of symptoms, as you can see by reading the site…everyone has their own little slice of symptoms…mine are 24/7 and have gotten better with medication, but for a doctor to say it isn’t migraine because it is undending isn’t true. Although I have questioned my dx since it doesn’t make sense a migraine would be going on 2 years now…
it’s all craziness, but meds help…the diet/lifestyle works for many (didn’t for me) and having this site makes you realize you’re not alone in this madness.
You will get better…it really helps when you surrender to some screwed up wiring!! and get a doc who doesn’t look at you like you’re nuts.
Best of luck in getting better!
Kelley


#13

Natasha, I just have to reinforce the information that it is VERY possible to have an long 2-yr. migraine with dizziness…I had dizziness on and off (mostly on) for 3 long years. You just have to get that book Heal Your Headache (I got my used on Amazon) and the author makes that exact point.

(NB from admin: this image links to a product this member has found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)

Is it possible to see another neurologist?? I’ve found that doctors are just people, and one is not necessarily as experienced or as knowledgeable as the other. I was at my internist yesterday for my yearly physical and she gave me a rather guilty but confused look when I told her that an allergist referred me to a neuro who ultimately diagnosed me with the migraine variant (includes MAV) and put me on meds which has almost completely controlled the dizziness.
Gail


#14

Welcome Natasha. Sorry you are not well :frowning:

I’ve been sick off and on for 30 years and am starting to get diagnosed with either MaV or anxiety disorder - no one knows yet really. I do know that my triggers that i’ve been tracking are mostly environmental that i can’t control. I’ve been avoiding the major migraine triggers with foods but still looking for other sensitivities.

I had the BAER test (provoked response) test also - i think they check for things that get in the way from your ears to your brain. neuromas (tumors) and stuff - another test different from an MRI. I had an MRI a few years ago and i i sure didn’t want another one - expensive. So i think that’s why my neurologist did it.

I am still holding off on the meds thing until christmas break. i’ started talking to a therapist about my anxiety so that’s basically what he is treating me for but the med would still be basicaly the same (almost) for MaV or anxiety. I am in menopause that is making things worse.

I too am sick for days and months at a time with just a few good days here and there. it’s very strange.

I hope you feel better soon and get some answers and help.

chris


#15

Wow Cookie 42, I have the exact same symptoms as you do. When mine first started I thought I had Labrynthitis and so did my doc. It seemed to go away after about a month and then the symptoms came right back but worse. Interesting that you have the right side vision that is strange. I also have that only on the right side. You’re the first person I’ve seen on here with only the right side vision problem. I’ve seen people with with vision problem, but not right side only. I’m new to this forum but I have been reading the posts here for a while. I’m gonna try to beat this with exercise, sleep and diet. I hope it works. But since our symptoms are extremely similar, I’d like to see what you’re gonna try and do to beat this. I wonder if there is some sort of similar migraine that we have that may be a little different than the others. I don’t know. I’ll let you know if the diet, exercise and regular sleep works. I’ve never had a migraine headache my whole life and still don’t get them now. I’m not looking to just lowering my symptoms, I plan on kicking this thing right out. I’m sure everyone here is too, but I will be working my best to get back to the way I was before all of this. Best of luck to you. Don’t get too discouraged if you have bad days. I notice when I stress out about it too much, my symptoms worsen.


#16

Hi Natasha
I am in Bournemouth not far from you and have/have had many symptoms similar to you. My symptoms became more significant and transferred from migraine with aura to MAV about 10 years ago at 35 and I feel it is hormone linked. I was only diagnosed with MAV by Prof Luxon at the National Neurological Hospital in Queens Square, London in Nov 2008. I have also heard postive things about Dr Surenthiran at Medway Maritime Hospital in Kent (as Penny mentioned)so try to get referred to either of them for a diagnosis as this will give you reassurance and a starting point for recovery. I gather there is a migraine clinic and a balance clinic at Southampton hospital too. There are no specialists here in Bournemouth but I improved with an NHS neuro physio for personalised VRT, low dose meds and lifestyle changes.
Mail me via the forum if you want.
Sian


#17

Hi Beatles909

Have you been diagnosed with MAV? I am still having tests done at the moment but my symptoms seem to match. My dizziness is definitely worse when I am stressed too.

I am trying to keep my stress levels down and also have been really watching what I eat but that doesn’t seem to make much difference.

What exactly are your vision problems like?

My worst symptom at the moment is a tingling face, I’m not sure if it’s connected or not, so I’ve just started another thread to see if anyone else has it.


#18

Yes, I have been diagnosed with MAV. By multiple doctors at the University of Michigan Hospital. I was there for 3 days in their ER cause they really wanted to figure me out.

It's hard to describe sometimes, but it seems that when i turn my head to the right, the vision seems slow to react to my movement.  It makes me more dizzy when I look to the right.  It feels like there is nothing wrong with the left side of my head, but the right side is affected.  Plus when I get a one sided headache, it's alway's on my right side and not the left.  The headaches not that painful though.  I don't see strange images or anything like that when I look to the right.  It just feels like it takes a little longer to focus when I quickly turn to the right.  Although I can focus no problem, really hard to explain.  But I do notice the right side disturbance.  And yes it is worse when I am stressed.

I am also a 31 year father of one child. He is 3. Sometimes I think that the new stresses with a kid and job may have caught up with me and started this whole thing off. I’m not sure, I’ve been trying to figure out why this is happenning to me for a while now.

I don’t have tingling in the face. But last year before I had any dizziness, I had a strange tingling and burning sensation in my left wrist for some reason. Don’t know if MAV had anything to do with that though.


#19

Hi Natasha,

Your symptoms all sound very familiar to me. I too had suspected MS and over the last few years have had two MRIs with that in mind. I also had optic neuritis several years ago which is very highly correlated with MS but, thankfully, those two MRIs confirm that I don’t have MS. I had the VEMP test years ago too, which is was confirmed the optic neuritis (from memory).

Good luck with it all and Ihope you get some answers soon.

Vic


#20

Hi Sian
When this first hit me, and the ENT started talking about MS I got really anxious. A GP prescribed me Temazepam for 4 weeks, but I only took it for 3 and then stopped. My tingling face started a couple of days after I stopped the temazepam. I was wondering if this might have anything to do with my tingling face? Although I have had it in and off for 3 months?
Natasha


#21

Hi Natasha
If you only took the Temazepam for 3 weeks it would be unlikely that the tingling is due to that but it is possible. Withdrawals from Benzodiazpeines usually occur after longer term use such as months or years.
Tingling face can be a symptom of migraine or many other conditions. I’ve had it since age 13 when I first experienced migraine symptoms and I used to find it the most scarey as numbness always followed. Now the symptoms are under control it rarely gets that far.
Hope this offers some reassurance.
Sian


#22

Thanks Sian.
The reason I thought the meds could be something to do with the tingling is because my dizziness started in June last year, and the tingling only started in September right after I had stopped taking the temazepam. As the tingling didn’t start with the dizziness I am just trying to find a reason for it thats not ms! The tingling is there constantly even when I’m not too dizzy
I’m waiting for the results of my recent MRI scan so hopefully I can put all of those fears behind me
Natasha


#23

Beatles909, have you tried any of the gaze stabilisation exercises for your vision problems? Also, did you have all the inner ear testing done before you were diagnosed?
Natasha


#24

Hi Natasha,

Yes I did have the inner ear tests done. All of them. I did do the gaze stabalization exercises too. They really didn’t do much though. Although they did seem to make the right side vision better, but not by whole lot. I’m going to try strict diet and exercise and regular sleep patterns. I just took myself off nortryptaline after 8 weeks. That did’nt seem to help a whole lot either. I’m gonna try and beat this the natural way. I’ve done a lot of research on how and what ways to eat certain foods and types of exercise to do that basically give you the same effect as antidepressants do. Except doing it the natural way through diet is much more healthier for you and more effective anyway. Ever since I’ve been hit with this nasty illness I haven’t done much. But I will force myself to keep on going. I know the first week will be a very dizzy and unpleasant week. But after about 2 months of work, I should feel like my old self again. That’s the goal. Aerobic exercise and diet is an important key to this I think, cause it’ll make the chemicals in your brain start to become more balanced. Once that happens, the blood vessels (which I believe are responsible for migraine) should start to act normal again and should relieve migraine symptoms. But in order to get to that phase, you gotta stay less stressed (which is where aerobic exercise helps tremendously anyway), and knock out things that cause blood vessels to act in a negative way, like caffeine, chocolate and MSG. I know there’s more possible triggers, but those are the most common I think. I plan on jogging in the morning before work cause it should give me better blood circulation throughout the day. Eat whole grain carbohydrates and certain meats that promote seratonin. Add in fresh fruits and vegtables as well. Of course only bottled water too. After 2 months of dieting like this and probably have a few meals a per week that are junk meals, I’ll be shocked if I’m not back to normal or close to it. I’ve just been so discouraged over this dizzy stuff It seems as if I’ve given up on life and haven’t done anything since it all started. Another reason I’m gonna try this way is because I’ve seen a lot of stories on here and I know my symptoms are debilitating for me, but some people on here have had this a long while and get the spinning vertigo and heavy headaches and probably need more help than just getting up and dieting and exercising. I just got this less than a year ago and I never get the heavy headaches or spinning vertigo. But motion sensativity and constant drunk feeling is what kills me. We’ll see if it works. Like I said, I have a 2 month goal for signs of improvement. Once my brain is used to the new way of life, I’m ready to enjoy everything again. I can’t wait. I’m pretty confident that it can be done.

Greg


#25

Hi Cookie,

Sorry come in to this discussion late, but just to say I am in London and was, after much shenanigans and disbelief by doctors, diagnosed by Dr Rosalyn Davies at the National Hospital of Neurology and Neurosurgery in London. She is a neurotologist in the neurotology department. Some neurologists are still misinformed about MAV. I now see a neurologist at the same hospital, they do know about it and are completely conversant and up on the fact (and it is a fact) that migraine symptoms can be constant. It is also nonsense for any doc to suggest you can’t have MAV without spinning vertigo. I started off simply lightheaded, full ears, tinnitus, and numerous other weird and vague symptoms.

Get a referral to one of the neurotologists recommended here. Dr Davies is massively approachable, friendly and knowledgeable, I can’t recommend her enough. She runs the neurotology clinic there along with Dr Linda Luxon. I was very happy I saw Dr Davies. I had to push my GP to refer me there, I had already seen two ENT’s who thought I was suffering from anxiety, when the only thing I was anxious about was how ill I felt. I was also tested for MS initially with a brain scan.

Wishing you well,

H


#26

Natasha - I’d just like to second what Hannah has just said. I also was diagnosed at The National (part of UCLH) by dr davies’ colleague Dr Bamiou, another neurootologist who’s very approachable. Just need to persuade your GP to do the referral! Good luck.

Dizzy Izzy xx


#27

Hi Everyone

Just an update. Had all my tests done and went to see the consultant for my results last night. The evoked potentials were all normal so he was happy to rule MS out, but the MRI showed I had an obvious Chiari Malformation and so the neurologist said that is whats causing all my symptoms, and he is referring me to a neurosurgeon for further action.

I knew what it was before he said it, so it wasn’t a shock, but I still feel that I may have migraine too. Today I am dizzy and my sinuses hurt, and the Heal your headache book describes me exactly!

Does anyone know much about this Chiari Malformation thing?

Natasha