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MAV or Vestibular Migraine?


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#1 mum3!

Posted 07 November 2012 - 12:06 PM

Just wondering about other's experiences with MAV or Vestibular migraine?

#2 tintin78

Posted 07 November 2012 - 09:03 PM

I was diagnosed with it approx 2 years ago. I have been suffering from it since 3 months after DS was born in 2008. Sporadically at first, every couple of month i would have an 'episode' and then in Jan 2010 it hit full on.

I don't get true earth spinning vertigo. I have an off balance feeling-kind of like after you step off a boat. Anxiety hit with it and i think that is honestly the worst symptom for me. I have a heavy head feeling/visual disturbances (like my eyes are blurry and i can't focus) Fatigue, a general feeling of not being 'quite right' and a variety of other symptoms. I don't get migraine either.

I have seen a neuro at RPA where i did balance testing and they all came back fine. I went on meds for a year but did not feel that much of a difference. Since January I have been med free and seeing a naturopath for the past year. My symptoms are a lot more manageable now as i take a variety of natural herbs. I do have bad days/weeks but nothing like i used to. It is a daily struggle sad.gif

Have you seen anyone? What symptoms do you have?

#3 mum3!

Posted 08 November 2012 - 10:06 AM

Thanks for your reply.  I've been suffering about 5mths, initially ENT appts then saw 2 different Nuero's and both think Vestibular migraine although inner ear testing came back as possible excess fluid. They want to treat for migraine first. Am about to start Verapamil, it sounds like it's just a lot of trial and error with the med's.  My biggest issue now is off balance, particularly the more I move around. (Hard not to do with little kids) I have better days but never back to normal. It's hard because those around just think you look normal therefore it can't be that bad.... I don't get headaches or nausea either so I don't fit the 'traditional' patient.

#4 tintin78

Posted 08 November 2012 - 08:06 PM

Trying to explain it to people has been the hardest part. It is so debilitating but because there is no outward symptoms it kind of gets palmed off sad.gif The only advice I have is if you feel off balance or not too crash hot, take it easy. Remember, even though you feel like you'll fall over-you won't. If you think you might, then just sit down. If you feel like you need to cry-do it. It helps to get it all out too xx

The diagnosis is pretty much an elimination of other causes. My GP thought i was a bit 'crazy'when i started mentioning all the symptoms i had (even ones that didn't seem relevant, but now i know are attributed) I had to ask to see an ENT. Once the ENT checked me over he was the one who referred me to the neuro 'Guru' and that's when all the balance testing started.

The meds are unfortunately trial and error, but it's giving them a chance to build up and see if they start working. From what I've read Verapamil is a good start. I started on Prothiaden which is an old tricyclic supposedly good with migraines. I have to admit the whole time i was on it i didn't get 1 headache and it cleared up my eye blurriness! My neuro has had patients who respond really well to it.

I only stopped Prothiaden once i started seeing my naturopath and started taking herbal support. I have mentioned this on a MAV forum and basically they don't beleive in natural therapies and are very skeptical about 'alternative treatments' but it seems to work for me and that's all i'm interested in! For some reason i still can't beleive the MAV diagnosis, which is why i keep searching for other answers and alternative treatments.

I still get days i avoid the shops because of my aversion to the lights (always keep sunnies around-they will come in handy) and stay home because i just cant do it! It helps to keep busy, but overdoing it can sometimes trigger things. My biggest trigger i have found over the past year is hormones. Around AF i find my symptoms are heightened.


If you need anything, feel free to PM me or post on here, i check every few days or so. I do understand what you're going through-IT SUCKS!

xx

Edited by tintin78, 08 November 2012 - 08:06 PM.


#5 mum3!

Posted 09 November 2012 - 10:39 AM

Hi, Have tried PM but it keeps going to an error message.

I had a few queries:

- What has the naturopath recommended that you think helps? I'm normally very skeptical regarding alternative therapies but after 5 months are willing to try anything.
- Do you have problems with your ears? ie fullness, pressure, soreness some mornings, pop lots... I guess the ear symptoms are why I still don't fully accept MAV.

#6 tintin78

Posted 11 November 2012 - 09:20 PM

When this first started and i saw an ENT it's because i had a 'fullness' feeling in my ears. I thought maybe sinus or something but nothing was found. I only get it every now and then. I have always been an ear popper-i do it and sometimes don't even realise im doing it. Lately i find that it feels like wind in my ears and my ear drum is vibrating. This is random. I don't get ear infections or anything else like that.

As for my supplements, I take the Metagenics range of products. My naturopath beleives i have blood stagnation and has been using acupuncture each visit. I have taken a range of products this past year, but at the moment i take Thyrocalm-this is because my Thyroid always shows up in his testing, however BT's show within normal levels. There is Kaprex which helps with inflammation in the body-again with testing it shows this too and i have had elbow inflammation which has been corrected since taking it. Menstrocare is to try and regulate my cycles and help with the stagnation and since sarting it have been noticing a lot of improvement. The last one is Calm X. This helps with the anxiety and to calm down my system and has various B vitamins and Magnesium in. Apparently this is the best way to get the magnesium into you (It's a powder you mix in with water/cordial)

Look, i've been seeing this naturopath for a year now. I tried chiro the year prior which was a waste. Before that acupuncture, but without the herb support it didn't do much. The first 3 months with my naturopath was getting me off the meds and after that it has been trying to find a balance in the different herbs. I have questioned wether i was doing the right thing and if it was really just a waste but It has given me my life back. I do not want to take meds-thats a personal choice, and it is quite $$ as i see him fortnightly/3 weekly.

What state are you in?


Tina


#7 mum3!

Posted 25 November 2012 - 07:34 PM

I just had another few queries... I can't seem to PM.

Did you find you were worse 2-3 days before and during your period?  I'm also interested to know what they said about your thyroid - I have Hashimoto's but since it was picked up have always had it checked regularly and levels were normal.

I'm still not convinced that there isn't something going on with one of my ears but am trying the med's per dr instructions and will report back to him in a week.

#8 tintin78

Posted 04 December 2012 - 08:29 PM

Yes-AF is definately a trigger for me.

When all this started, it coincided with my first AF after DS was born, so i have always felt that hormones  have been a part of it, but noone has really listened until i started seeing my naturopath. I swapped one of my tablets with hime about 2 weeks ago now and it's one that helps with AF and it's made a huge difference with the off balanceness!

My thyroid has been fine all the way through (according to BTs)  but naturopath beleives it's an issue.

I have just had a bunch of other BT's done and I have low Vit. D and Ferritin (but not anaemic) this has been a regulaar occurance for the past 4 years now. I also have a liver issues after having my gall bladder removed pre-DS.

How are you feeling with the meds?

#9 mum3!

Posted 08 December 2012 - 01:14 PM

Hi

I've been on the Verapamil for a few weeks now, it's possibly helped a bit with the vision but nothing for the off balance which is my biggest problem.  Can I ask what the tablet with the Naturopath for the AF was which you think has helped your balance?  I'm off to the neuro later this week to find out my next option. After reading so many stories I believe hormones are part of it - whether it's just making things worse or part of the condition. Mine started when I came off BCP - Qlaira and onto Brenda - I wonder whether this had any involvement. Also am low in Vit D.


Thanks for your replies, it's so hard to explain this to anyone.

Edited by mum3!, 08 December 2012 - 01:15 PM.


#10 tintin78

Posted 09 December 2012 - 02:18 PM

I am taking a herb called Gyno Clear. It helps to regulate cycles and if you have heavy/painful AF and the 'blood stagnation' that naturopath has said previously.

Another thing that might be playing a part in this is an ovarian cyst i have. Just this week then Gyny has said he is pretty sure i have endo. Having surgery in Feb to remove cyst and see whats going on. It does confirm my suspicisions that hormones are an issue here. The million dollar Q is how will i feel after surgery....

Its hard trying to explain it to people-I just tell people i have a type of vertigo that makes me feel off balance the majority of the time. They nod and empathise, but i STIIL don't think they get it lol

#11 mum3!

Posted 15 December 2012 - 06:23 PM

Thanks for your replies!  I saw the neuro again this week, we've stopped the verapamil as no difference so the next one I'm trying is Sandomigran (Pizotifen). Am a bit concerned with the side effects as initially people say it makes you very tired lethargic and also the weight gain.  As things are really busy I'm going to wait until the week after xmas to start trying it.  The other supplements I'm going to try are magnesium and vit b2.  

I guess I'll see how I go.

#12 mum3!

Posted 17 January 2013 - 09:01 AM

Thanks Tina for your PM.  I have replied, please let me know if you haven't received it as it sent but doesn't appear in sent items.

#13 mum3!

Posted 17 January 2013 - 03:26 PM

I'm getting your PM's but you mustn't be receiving mine.  Can you PM me your email address and I'll send it to that.

Thanks

#14 Pippip

Posted 28 February 2013 - 10:51 AM

Hi,
I feel for you ladies. It is a really difficult condition. I've recently been diagnosed with MAV after previous misdiagnosis's of BPPV, labyrinthitis, vestibular neuronitis and menieres. I'm currently in my 4th episode, 3 prior were btw 2002 and now. This current one has been the worst as I'm at 7 weeks  in and still struggling.The violent spinning and vomiting lasted for almost 2 weeks this time, and was followed by ongoing problems with balance and continued intermittent spins. Luckily the nausea has passed but my balance and dizziness is still here. Previously I was studying/working so taking a couple of weeks off was an inconvenience but no huge deal. In the past although I'd feel 'off' for a month or two after, I was able to get back to daily routines (I did feel like I was on a boat, but it was manageable).  This recent episode came on when my son was 10 months and it has been hard!! I've also experienced a number of neurological symptoms this time with episodes of slurred speech and numbness through my left arm and leg and blurred vision, which was frightening.  I'm now seeing a nuerologist who is confident in the MAV/Vestibular migraine diagnosis, and I'm currently on the medication merry-go-round to find the right one. Have tried sandomigran/Pizotifen  without success, and have just started Betaloc, fingers crossed this one will work! I did find the sandomigran caused me to feel quite tired, but it wore off after a few days. I found taking it earlier in the evening helped feel less tired the next morning.

Interestingly, my Neuro had some opinions regarding the hormonal connection. This current episode came on the day before AF arrived. I'm still breastfeeding DS and the strong advice from Neuro has been to consider weaning, as apparently the hormones released from nursing can trigger the migaine? Also, Dr suggested that pregnancy of all things may actually be curative...we are TTC #2 so hoping the good pregnancy hormones may help.

I've not been able to drive since this episode started, as the spins come on both from head movements (so headchecks in the car are no good), as well as from motion. Interested to hear how others have managed getting around and if they did stop driving, how long it was till they were back behind the wheel?  


#15 tintin78

Posted 11 March 2013 - 12:17 PM

Hi Pippip

Sorry to hear you are a fellow MAVer sad.gif

I can't help you with the driving questions-I don't drive, but if i did, i guarantee i would not have driven for the past 4 years!
Do you get actuall spinning sensation-true vertigo? I have only ever had it once which i think freaked me out that it was going to happen again, but it never has. Funnily that happened at the very start of this episode that has been happening since Jan 2010

Hormones play a huge part in mine. I have only just realised this i think over the past year. I was finding patterns as to when i was feeling crappier and it would always coincide with leading up to AF and sometimesduring aand after. My body is going through a hormone upheaval -I recently had an ovary and tube removed due to a cyst and endometriosis so it's still trying to deal with that and i've noticed i'm feeling a bit blergh at the moment. I am hoping when my body starts to settle down and regulate that my symptoms will too. Mine is generally off balance feelings, heavy headedness,aversion to lights (not getting clarity/able to focus with my eyes) and the associated anxiety.

I have had the numbness/tingling. Mine happens in my right arm and i feel like i have to shake it all the time. For me it's the anxiety causing it. I also find it hard to find words sometimes and struggle with memory (which i don't know if that's the MAV, having had 2 kids or getting older lol) I also find lack of sleep doesn't help-with a 10 mth old, i take it sleep migt be an issue for you too?

There are so many other meds that can be tried too- but it is trial and errorr. I find my natural approach is working for me, but i am striving to find a cure! I don't want to take meds if i don't need to, which is why im seeing a naturopath and it is working to a certain degree. As silly as it sounds, i am actually thinking of seeing a hypnotherapist too. Apart from my gyno issues, fatty liver and low vitamin d/ferritin levels there is nothing else 'medically' wrong with me so i figure it can't hurt. Even if it justs curbs the anxiety, that will be a dream.





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