Hi Krystal,
Anxiety comes with the MAV territory - being dizzy all the time is a good reason for anyone to feel anxious so you’re not alone! Getting enough sleep is important so, if the ami doesn’t suit ask your GP for another med. You could switch straight over to Nortriptiline or Prothiaden (Dothep) - both tricyclics. I found Dothep the easiest to tolerate & now get a good night’s sleep. You could carry on with the Pizotofen for a while - just because other people can’t tolerate a ‘second round’ of the same med doesn’t mean that you won’t. There are probably many MAVers who try a repeat of a med & it works for them - they probably wouldn’t bother to post this.
Barb
Hi Barb,
I got up to 20mg of the ami, think maybe perhaps it could of done something for my headaches if I continued to increase but was getting a racing heart and felt a new kind of swimmy in the head after taking it in the night. So I’m decreasing that and I’ve gone back on the sandomigran and I’m increasing that going up to 1.5 mg tomorrow.
After a lot of humming and harring, i decided to see Dr Granot, I’m flying down to Sydney on the 14th of Feb. Hopefully he can point me in the right direction. I’ve done a lot of reading on here and saw that under Dr Granot’s guidance you struck medication gold. I just felt like I needed a professional that knew about all possible avenues. As I saw my GP about coming off ami and going on Dothep, she asked me if i had found that in my research, before I had even finished my explanation she had started typing the script up. I want someone to tell me, yes, no, I think this … because…and with my knowledge and going by your symptoms you should try this…
I can’t wait to find my perfect med.
Hi Krystal
I’m sure you won’t regret making the visit to Dr Granot - I agree seeing a doc who knows this illness ‘inside out’, who is able assess your particular symtoms and prescribe for you is so reassuring. Yes, he may decide to give you a med he has prescribed for others but that is because he knows that they have worked for some of his other patients. We are all different so, unfortunately, in spite of Dr Granot’s experience, there is always going to be some trial & error involved. I was disappointed the Periactin didn’t help my visual vertigo symptoms so now I’m moving on to Topamax in conjunction with Dothep (rarely have a headache). However, it is so reassuring to know that advice is just an email away from a very experienced specialist & I am no longer living in that terrifying world of not knowing what’s wrong & no doctor being able or willing to help!
Keep us posted!
Barb
Where to even begin? New here but not new to mav. Ive had distorted vision and snow for 5 years now. The vertigo started about 2.5 years ago. Other symptoms i have are random twitches, poor temperature regulation, fatigue and achniness.
— Begin quote from “DizzieLizzie1”
Can I just ask how many people suffer only dizziness without any additional symptoms?? I know the dizziness is horrendous enough on its own.
When this all dizziness started I was ill for 2 weeks with an intense pressure headcahe and thought I had sinusitis. When the dizziness hit it was in conjunction with the horrific pressure headache. I also have pins and needles in my hands, feet, back and head, crippling fatigue at times, flickery shimmery vision, stinging eyes, twtiching in the muscles of my hands and legs, occasional tremoring in my fingers and see hundreds of floaters and strong after images. I am really keen to get a consensus on who else has this sort of diffuse neurological disruption alongside the dizziness??
Before the dizziness hit I had years of neuro type problems, which all began at the age of 18 with a pulling muscle tension in one side of my face that lasted 6 months, swiftly followed by intermittant (1-9 month periods) of visual disturbances where I would sort of see TV static over everything and extreme paraesthesia.I went to the National Migraine Centre in London who were amazing (a charity, you pay a one off donation and can become a patient). The doctor there said she felt some of my early symptoms didn’t sound like migraine. It’d be great if whoever can could post if u identify with any of this?? THANK U! x
— End quote
This is almost exactly the same as me, after your lyme diagnosis i am worried - how is that going?! I don’t have the money to get a proper test, but have asked my gp for a usual lyme blood test. We’ll see!
I had the neuropathy issues (tingling sensations, twitching) as well as the vertigo but these resolved slowly after going gluten free.
— Begin quote from “Pana”
I had the neuropathy issues (tingling sensations, twitching) as well as the vertigo but these resolved slowly after going gluten free.
— End quote
That’s interesting thanks Pana,has going gluten free helped with tiredness at all?
— Begin quote from “Jem”
Lizzie, my main symptom is dizziness and imbalance however I also suffer and have suffered the following at some points during the last 3.5 yrs: fatigue sometimes very severe, odd bits of tingling in arm or leg, chronic neck pain, visual migraine once per year approximately, twitching in eyelid muscle, bloodshot eyes, crunching sounds in ear when moving jaw, occasional ringing in ears, hyperacusis (muscle twitch inside ear in response to certain sounds), stiff feeling in right eye, urinary frequency, sore skin on leg, muscle trembling, yawning lots to get extra air into my lungs, anxiety, panic attacks, heart palpitations. I am sure there are other things too.
I disagree with the migraine doctor in that, from what I have read about migraine, all the symptoms you describe sound as though they could be due to migraine. Migraine covers such a wide array of neurological responses including people who have complete paralysis down one side of their body and are convinced they are having a stroke but it passes after a few hours or so and therefore is actually migraine. One way to be sure would be to have a brain MRI scan to rule out anything sinister. If nothing shows up then it is even more likely to be migraine x
— End quote
These are my symptoms too Jem - the yawning is so bad at the moment! i need it to stop! haha! x
— Begin quote from “whosthatchick”
— Begin quote from “Pana”
I had the neuropathy issues (tingling sensations, twitching) as well as the vertigo but these resolved slowly after going gluten free.
— End quote
That’s interesting thanks Pana,has going gluten free helped with tiredness at all?
— End quote
The fatigue, which was debilitating, was one of the first things to go away. I noticed improvements within a month and after a year I think I’m up to speed on where I used to be five years ago. Over the course of one year, I went from cycling to work every day to lying in bed every day, unable to work. That was the status quo for a couple of years until my neurologist came up with gluten ataxia as a possible diagnosis in addition to the MAV diagnosis from the ENT.
He suggested eliminating gluten as a trial even though my blood tests came back inconclusive. I have celiac disease in my family. Current testing is only able to ascertain whether or not you are creating IgA antibodies to the damage being done intestinally which is celiac. The current research on gluten ataxia is demonstrating that while some people might have intestinal issues, one of the the primary areas of damage is to the Pukinje cells in the cerebellum (balance centre of the brain) and at this point there is no test on the market for it. Responding to a gluten free diet is one of the best indicators at the moment.
I’m very strict on the gluten free, staying away from all processed food including certified ‘gluten free’ products as these still contain under 20 ppm gluten. I’m also careful with non gluten grains as a lot of these carry cross contamination from the gluten grains. It took some months for everything to slowly heal up. The neuropathy was one of the last things to diminish but it’s gone.
I too was scared about the possibility of Lyme, I had a blood test for it, but I live in Australia, according to the government it’s not found here (which it is) therefore the tests are so basic it only picks it up in 15% of patients. My tests obviously came back negative, but if I’m still struggling with symptoms in the future, i will be travelling down to Coffs Harbour where there is a Lyme specialised GP, he sends blood work over to the states for testing.
I also had blood work done for celiac disease because I have it my family too. It wasn’t conclusive but did show up on the low side. I tried going on the gluten free diet, I only lasted 2 weeks, it is so hard trying to do it as well as the migraine diet. I didn’t see any improvement in that time. Again, if symptoms don’t improve soon, that’s another thing I will go back to trying.
I had the twitches, pins and needles, buzzing through the body sensation, but I felt they were all manifestations of my anxiety, as they only appeared during the peak of my anxiety, and settled down after the anxiety decreased. I only have a few twitches here and there when I find myself in an anxious situation. I’m not overly tired but I was like a zombie on stemetil.
whosthatchick - are you on any meds, could they be causing your tiredness?
Hi Krystal
I found the first month or so of gluten free to be difficult to adapt to but after that, the desire for gluten foods went away and I found a rhythm. It basically boiled down to meat, vegetables and some fruit and there’s alot of variety in those groups. I eat a lot of fresh vegetables and cook a lot of Laotian and Thai food. 
The better I felt, the more impetus it gave me to keep going with it. Life was pretty hard and mean for a few years and it was so validating to finally be able to walk without staggering and have the energy to do so.
It does take a while for the body to heal and some time to be rid of the antibodies. I’m not sure what the half life is of the antibodies involved in gluten ataxia but I do know that it can take up to three months for your body to be rid of the antibody ttg2, IgA which is involved in celiac. That’s barring accidental glutenings of course. I first tackled the gluten free approach and in the last three months, I worked in the migraine diet. Now it’s just habit.
Dr. Marios Hadjivassiliou, neurologist, based out of the UK has been the leading researcher in the area. Some of his studies show that the neurological symptoms of gluten intolerance are the last to leave on a gluten free diet and there is some indication that the longer you are on gluten the more permanent the neurological damage is.
You might want to consider giving gluten free another go since celiac does run in your family. Again, the current testing specifically looks for ttg2 antibodies and these do not seem to be a factor in gluten ataxia so if you were reacting to gluten neurologically, your testing wouldn’t have caught it. I believe Dr. Hadjivassiliou is developing a test that looks specifically for ttg6 antibodies but it is not ready yet for the market.
Thanks pana for your thoughts and suggestions, you really know your stuff.
The frustrating thing for me, is that I was getting better on Sandomigran. I was improving, until I developed the mother of all headaches 3 months ago, and I still have it now. I was desperate and grasping at straws willing to try anything that’s why I went on the gluten free diet. I don’t have stomach pain after I eat gluten, I’m not loosing my hair, really fatigued or take a long time to heal skin sores. Which are all classic signs of celiac, but I guess we can’t go by text book symptoms since MAV isn’t the classic migraine.
But if I was getting better on a medication that doesn’t really suggest to me, that gluten is playing a role. But who knows.
Gluten free bread scares me, it really is horrible. blahh haha
Yeah, those are all signs of classical celiac. Gluten ataxia is different ball game which primarily shares the same culprit: gluten.
Some gluten free bread is so horrible even my dogs wouldn’t eat it. :lol:
If you’re interested here is a site that pulls together some research papers from different specialists/neurologists. I’d pay special attention to Hadjiivasilou’s citations.
sites.google.com/site/jccglutenfree/
I have never had the migraines with my vertigo so when the ENT looked at me and said, “You have MAV”, I just looked at him and said “but I don’t have migraines” which started the whole venture into understanding ‘silent migraine’. I’m really sorry you’re suffering.
I can’t speak much to the different medications that one uses for MAV as I’m not on any of them wanting to try the gluten free thing first. I do know that migraine is experienced by many gluten intolerant people as a reaction to eating gluten but I’m leery of saying it is the cause for all migraines. I would say exploring the research might offer you up some ideas that might click with you.
Thank you Pana for your time to explain this all to me. I will definitely keep all this info in the brain bank.
Barb - i saw Dr Granot, the plan of attack, stay on sandomigran, possibly increasing to 4 or 5 tablets. (When a neuro says give it 6 weeks, the 6 weeks starts from when you reach the therapeutic dose.) How is the topamax going? any improvements?
He said with the migraine diet he hasn’t seen it to have much success, if it gives you some relief good, but if it doesn’t work after sometime, stop. But caffeine he’s seen to make things worse.
He said his two favourites are sandomigran and periactin. Then topamax.
For everyone, who says, sorry to be put bluntly, wake up to yourself, you can never be cured from MAV, it’s not an injury that heals, once you have a migraine brain you always have a migraine brain, you just have to manage the symptoms. Dr Granot said, he’s seen people get better and never have it again. I asked him “once i find my medication stay on it (he interjected for 6 months) and taper off it, is there a possibility of never ever being dizzy again in my life?” He said “yes”.
I understand this isn’t the case for some, some people on here have battled with MAV for a long time, but he said it’s possible, so why can’t it be possible for me.
Krystal,
Thanks for giving us an update on your visit to Dr Granot - I’m sure what he says makes a lot of sense! It’s good to give each med a proper trial then ‘down he track’, if you are still searching (let’s hope you’re not!) you’ll know that you won’t need to say " I wish…"
It’s good news that he has patients who don’t suffer VM for the rest of their lives & I’m sure that’s true - they just don’t revisit the forum - they’re busy 'living life to the full! So it gives us all hope. Good luck with the Sandomigran it has helped quite a few people. Agree, he isn’t big on the diet area - apart from the caffeine which is still one of the things I really miss - I love dark chocolate.
Started off quite well on the Topamax then an o/seas visitor brought a pressie - a nasty virus! Thanks!! Anti-biotic helped but ramped up the VM. From saying Dothep has the headaches ‘under control’ now waking up with one every morning.Never a dull moment with this darn condition!
Barb
Barb,
You’re right, I’d rather have Dr G in my corner, then not. I’m currently on 2mg of pizotifen, have been on it for just over 3 weeks and am going to contact Ron for the heads up to increase to 2.5mg. I think it may be helping with the dizzies but not the headaches. How long we’re you on the 100mg of Dothep before you saw improvement with your headaches? before that overseas visitor gave you that unwanted present. Have you recovered from that yet? I’m paranoid about germs now, even more so then before VM. The slightest of tickle in th throat, or I walk past someone coughing I go straight home and have echinacea.
When you thought the periactin was working with your visual vertigo were you completely symptom free or were you still having blips and bad days? Because I might start thinking ‘sandomigran might be working’ and then I have a few bad days and it squashes the hope. Like when it works will it completely work and it will it slowly decrease, with the 3 steps forwards 2 steps back mentality until you’re better?
Before I had visited dr G, I got a script for Dothep but hadn’t started it yet, in my research, I came across a warning to make sure you have regular eye check ups while on it. I asked my doctor how regular is regular, she had no idea but she assumed annually. So I just thought I would mention that to you if you didn’t already know.
I crave chocolate brownies with whipped cream daily.
Hi Krystal,
Hmm a lot of questions to challenge my memory bank - or turn to my trusty Headache Diary!! Can’t remember anything about Dothep causing eye probs (had a recent check anyway & no change so all good there!)
I took Dothep for 5mths gradually increasing to 100mg. Didn’t see a big improvement in headaches until then when they reduced from app.8-9 a mth to very few until I started Topamax!! However, now over that hurdle & hoping to clear up the visual vertigo. Virus gone - thanks.
As to the Periactin, I never got anywhere near being symptom free - just a few hopeful signs that it was helping - like being a passenger in the car without feeling sick & dizzy, being able to prepare food at the kitchen work top without having mini spins, walking round the supermarket (still with sunglasses on) but being able to shop. These hopeful signs then started ‘regressing’ & by eight weeks I was back to square one & changed over to Topamax.
Can you take the Dothep & Pizotifen together?
Barb
Thanks Barb for all your answers. I will be starting on Dothep mid next week with Sandomigran. I’ve read your other posts about going to a compound chemist to get smaller doses made up. I will be taking your advice on that one for sure. What was your starting dose? 5mg, 2.5mg? Do you have any other tips for me, that you wish you knew before you started? I see the Topamax is starting to show promising signs for you. That’s awesome news. 
I strongly suggest people with neurological symptoms such as tingling arms / legs / fingers / toes, twitching muscles, electric zaps, body jerks, etc, etc, to check out the “other illnesses” section and see some of the recent posts re Lyme.
I won’t get into details in this thread but you may have something else.
I have the additional symptoms & I have migraine…