My first post...I'm 2 years in and I'm desperate for some answers, help please?

1

Hello all,

I hope anyone can help me, I am from the UK and have been suffering with vertigo since December 2013. I apologise if this is going to be long winded but this is two years of crap condensed into one post so please bear with me :smile:

A bit of background: I have suffered migraines from about 2005 onwards usually around my menstrual cycle (sorry overshare), I would get one or two before going on and coming off which would usually have me ending up in bed, but they would last a few hours. So they would probably be about 3-4 a month, they gradually got worse, so I went the DR who prescribed me sumitriptan, but I found it was actually cheaper and just as effective using a combination of paracetomol and ibuprofen (I was student at the time - every penny counted, prescriptions were £7, paracetomol were 15p as were ibuprofen) so I stopped using the sumitriptan. I suffered with them for years to be honest, they were bad but didn’t ‘ruin my life’, they were painful but I just went in a dark room for a few hours with the painkillers and got on with things - this went on for years. Both my mum and sister also suffer them, so it isn’t an unusual thing in our family. My grandad on my fathers side had menieres disease, but non present on my mothers side.

In December 2013, I woke up in the morning to intense dizziness (vertigo), it was the scariest thing I think I’ve ever experienced, I thought I had moved too quickly or something, after about 15-20 seconds it eased off, and then I moved again and it happened again. Every time I moved, it kept happening, I felt like my legs were drunk, I felt overwhelming nauseous and sick. I went to work anyway (!!!) and over the course of the day it got worse and worse, luckily it was a friday and was a half day. My sister has had labrynthitis before, which was the only reason I did not go A&E thinking I was having some sort of stroke as she explained over the phone exactly what I was feeling. The next day we went to the outpatients dr surgery where I was told I had vertigo which was a symptom of something probably like labs as we had suspected. She gave me some tablets and said it might be a few days or weeks before it went as its a virus it would be gone soon enough.

Anyway needless to say christmas came and went and no improvement. After months and months of no improvement and them now thinking it couldnt be labs an appointment for ENT came through and I was told at the ENT appt that it could be something called BPPV or Vestibular Neuritis. They did an epley manoeuvre on me which nearly made me vomit and put me out of action for about a week afterwards where the Dr said I had no nystagmus so it had to be VN. He asked me no questions about migraines or the like (at this point I had no idea about MAV or VM). He didn’t really explain what vestibular neuritis was just said that I would have to make lifestyle changes and that the pills would help a little with the nausea but wouldnt cure it. At this point I’m absolutely baffled by everything and I’m looking at my then fiancee like wtf? So I leave the hospital with pills in hand, the word vestibular neuritis written down for me to do some research when i get home and me and my other half completely bewildered. Me and my fiancee were due to be married october 2014 and we had already paid deposits on everything so were hoping that everything would have been sorted before then, I was starting to panic a little bit now. This is about three months in, the Dr cannot tell me when I will be fixed and my employer tells me that they cannot keep me on any longer so after 1 1/2 years of employment (and with great regret yadda yadda) they had to let me go) so I am now unemployed too to boot.

After more months of waiting the ENT sent me for an MRI scan which came back normal thankfully, I also had a hearing test which again came back completely normal so apparently this rules out meneires disease I believe as this comes with hearing loss, although one of my symptoms is sporadic tinnitus. I had a second MRI with contrast, again this came back normal. I went back to the ENT who did a second epley manoevre on me as I complained that when I rolled over in bed I had intense vertigo and had felt I was sinking into the bed sensation, this was a different dr this time who specialised in BPPV and he confirmed that I did in fact have a positive read of nystagmus in my left eye (which was my worst side), same with bending over, looking up, etc. The Dr also thinks I still have BPPV as well as VN on top of this and I am due to be married in a few months time and all I can think is how the bloomin heck can I get through an entire day/night of all this ? I can’t even walk?? needless to say we did get married but not quite how i imagined it (head down a toilet the night before your wedding day because you decide to have ONE beer on your tablets-I pretended to drink on the photos lol! honestly it was not quite the fairytale I had imagined but having your father walk you up the aisle really helps lol).

Right so fast forward the DR looks over my notes and sees that I have a history of migraines, decides that VN might not be the cause after all and decides to send me to a neurologist-wait several months for appointment - I feel i am finally getting somewhere, I see the neurologist for FIVE minutes who says because I still have BPPV she cannot help me with the migraines bangs head against a wall - I have finally got rid of the BPPV hurrah!!! result!! but I still feel like crap from the mav/vm, so I have asked my doctor to refer me to another neurologist who i have looked up myself who is an actual migraine headache specialist in my area so I have to wait another several months to see. I have so many questions about it that I feel are unanswered, all I have been told, literally is ‘I think you have migraine associated dizziness’ when I tried to ask questions he told me that I should ask the neurologist. I have been waiting two years quite patiently I feel to be answered and even the GP’s give me answers like ‘how long is a piece of string’ what type of answers are they???

These are the symptoms I get:
-nausea (hungover, sicky feeling)
-tinnitus (sporadically)
-imbalance (not quite same as vertigo from bppv just off balance feeling usually from movement- moving my head, moving in the car, escalators, lifts etc are really bad)
-moving things on screen on tv etc are really bad

  • sensitivty to light (shopping centres, supermarkets, hospitals, fluro lights) and loud noises)
  • migraines and headaches
    -Sensitive tummy
    -pressure/fullness in my head/ears
    -symptoms are 24/7 they do not appear to be ‘attacks’ of migraine, they are relentless and never go away, regardless of whether migraine is present or not, this really seems to baffle the docs
    -heavy head / neck
    -extreme fatigue

I don’t vomit anymore, very rarely in fact, usually it affects my bowels if anything. I suppose that is something to be grateful for.

Here are the tablets I have tried:

  • Stematil
    -betahistitine
    -Cinnarazine

for the mav:

propranalol

and I have just gone up to the maximum dose of topiramate, but to be honest they are making me feel worse and are giving me very weird and unpleasant side effects and not sure I can stand them much longer, but I will keep on at them

My questions are if anyone can help me:

  1. Do my symptoms sound like migraine associated dizziness? or more like VN? even symptoms that are 24/7?
  2. Are the tablets supposed to make you feel well? because I am testing all of them out on the basis that they are supposed to make the dizziness go away and make you feel well? but maybe this never makes you feel well and I should be judging them differently?
  3. Is this my life now? my husband has this idealistic view that we will find the correct pill and it will make all of this go away and it will all be better so i can go back to work and things will go back to work, is this my new normal?, is this how it works or is our vestibular function absolutely screwed now? I don’t understand it enough to explain it to him? and I don’t want to give him false hope, unfortunately I think I already have. He has been through enough already, he has had 2 years of looking after me and after thinking I had VN this new diagnosis I think he thinks I will get better…is this not true? I was hoping I would be able to find tablets and eventually get back to work (we have had to move in with my sister as financial circumstances are dire, as newly weds this is putting all new strains on our marriage as you can imagine, three is most definitely a crowd).

I feel really hopeless to be honest and at the end of my rope. Although I lost weight in the beginning from vomitting, the lack of motion has meant I have put on over 2 stone (I used to be a size 8) so it is very noticeable on me, I feel and look awful, I can’t remember what it is like to feel well. I have no social life anymore, me and my husband barely go out or do anything nice because a) we never have the money to and b) I never feel well enough. I feel our life and his life is on hold, I don’t know why he is even still with me :frowning: I am usually a very positive person, he is usually the depressive one lol but lately I cannot keep my emotions in check and it is bringing us both down, I need an outlet and answers and the doctors can’t seem to give me any I feel like i have been on a merri go round of diagnoses and non-answers, as I said the GP’s are so enigmatic - or maybe they simply don’t know themselves. I try my best to do things but every time I do things it absolutely wipes me out and I am so tired of putting on a brave face that it is exhausting me. I am much better than I was, I used to walk around holding on to everything, and now I try to walk at least every day 10 - 20 mins a day around the block with my husband and dog - but even that I can’t do it every day and again it is enough to wipe me out. My husband thinks that this is great and it is a sign I am getting better but he doesn’t see that it is exhausting me…I know there are people MUCH worse off than me, and I am grateful usually most of the time for the little things in my life that keep me going I am just having a really bad time at the moment not knowing what to expect with this condition as nothing has been explained to me… sorry everyone for the beast of a message and for the rant of a lifetime, I’ve been harbouring all of this for a long time…thanks to all that got through all of that lol and whoever takes the time to respond I really really appreciate it xx

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Hey there, Yup I have had all the symptoms you describe and pretty much identical. I know how hard it is. Read some of my posts and those of others on here, for encouragement and guidance. I am still figuring out what works best, but for me, gabapentin at 100-200mg 3x per day helped enormously but was too sedating, nortriptyline also helped at 10-20mg per night (taken 12 hours before you want to wake up) but it caused a rare side effect for me called rapid heart beat, so now I am trying topamax again which is very hard to get used to at first and you have to titrate up slowly. I am staying on 25mg for a week at least and then going up to 50mg again per night. You have to be ready to get better in order to tough out the side effects at first. It really helps with vertigo and light sensitivity at doses higher than 50mg but it takes time to work apparently. Stay away from anti-anxiety meds as those can be addictive. Find a good neurologist who knows about migraines (atypical ones that cause vertigo). You will get better and I am still working full time. Prayer helps a lot in my case and a good doctor who finally prescribed me topamax recognizing this wasn’t just anxiety. Feel better-the great thing about the forum is recognizing you aren’t alone with these crazy symptoms. xx

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PS Mine started exactly like yours too. I remember the day it started in April 2013. I have gotten so much better over time and with meds, so find a good neurologist asap who can trial you on some migraine meds that will help with the ear fullness, vertigo etc. and light sensitivity. Light sensitivity is the hardest to get rid of in my case, but topamax when I was on it before at 50mg was starting to help with that… but you have to be ready to take topamax. Some people don’t have side effects at all, but in my case, I was emotional about being on a drug and wasn’t ready to stick with it. You might have some pins and needles etc. but just don’t panic. I remember and tell myself that these drugs can get you well. Search for JamieH and Zoology on this forum, as they were very encouraging about topamax in my case… everyone on here has been very kind and helpful though. Btw I only started trialing meds in the fall of this year, so you’ll be smarter than I was f you start earlier than that… I just was trying all these hopeless natural solutions. Didn’t work.

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Hi Diz -

  1. It sounds bang-on similar to vestibular migraine - but the best person to diagnose is a neurologist who specializes in the condition.

  2. How long have you been on Topamax? How strong is the prescription? Topamax typically takes at least three months for patients to feel any level of significant change - so you have to wait a pretty long time before you feel anything other than side effects (ie: sleepiness, weight loss, tingling legs). It’s been almost three months for me and I’m just now feeling a teeny-tiny improvement (ie: migraine pain is fading, tinnitus isn’t as strong, I can ride the subway without wanting to hurl - and I’ve made it up to 30-seconds on the optokinetic video) - but that tiny improvement has been life-changing.

I’m not familiar with most of those meds you listed - but - topamax has a high success rate for migraineurs. trust the topamax. Understand that it’s not overnight. You won’t feel amazing tomorrow or even the next week but it will work in a few months - you have to be patient. Also invest in proper migraine vitamins: magnesium, vitamin-d, butterbur, riboflavin, fish oil, etc. Talk to your doctor about the proper dosage amount. These vitamins will help you. If you haven’t already, adopt a migraine diet (since you have menstrual migraines, it will help with those, too). JoyBauer.com has some good tips on what to eat, as well as how to store food (which apparently is incredibly important when it comes to migraine eating habits).

  1. If you have vestibular migraines then yes, this is your life now. But migraines are a condition - we learn to adapt to them and soon our bodies will settle down and adjust. Right now your body’s in shock. Your brain’s freaking out and the nerves are all angry, making everything feel all tilty and spinny – but soon enough, with the right medication, diet and vestibular therapy (even if you do it at home, you must do some level of vestibular therapy so you can retrain your eyes and your brain), you’ll gain more and more control. But pills won’t be the single answer to this: you have to make lifestyle changes.

Regarding your traditional migraine pain (mine are vestibular and intractable with aura - meaning: i have migraines all the time… wooo!), it’s important not to take traditional pain killers (paracetamol, etc) as those will cause rebound headaches. As much as a blows, it’s safer to sit in a dark room, drink lots of water and wait it out than take pain pills (abortive meds are different). If you get a super powerful migraine, the best safe pain killer is cannabis - it’ll eliminate your migraine pain in about 10-seconds flat. Just get a really mellow strain (ie: low in thc) as some can react funky with topamax. It’s really important not to mix pain killers (otc or prescribed) with traditional migraines – that really will screw up your migraine cycle (ie: make it so you can’t break it). Just remember: don’t take otc pain pills. I repeat: don’t take otc pain pills!!!

Feel better and good luck with the topamax :muscle::muscle::muscle:

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Hi Primer,

What dose of topamax are you on? I am sorry if you already mentioned this!

I am thinking of restarting it AGAIN. I love gabapentin in some ways, as 100-200mg three times per day was cutting my MAV down so much, but it’s causing some edema (calcium channel blockers are known to do this) and sedation is an issue on it.

I would love to know what dose you are on, and what dose maybe you are targeting on topamax?

Thank you,
Liv

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No problem, @liv85. I’m at 125mgs. Started in late December. Just in the past few weeks I’ve been recognizing improvement in my intractable migraine symptoms: less aura, less tinnitus, less level-8 grade migraines (remember: I have chronic traditional migraines on top of vestibular migraine) & more level-6 grade migraines that start later in the day (rather than at 5am), less severe photosensitivity (I even made it to a client’s photoshoot this week!) and less severe nausea (but that’s probably because of the Baclofen).

Here’s an interesting tip for you – Topamax wasn’t working as quickly as we needed it (because that’s not how it’s supposed to work). After vestibular therapy one morning, I was in severe migraine pain (level 10) and ended up in the ER. After that my neurologist put me on steroids for a week - it did the trick. It kick-started the topamax and that was when things started to get a little teeny bit better and every week I’ve had a shimmer of progress. I effing hate steroids but they work.

Because of my level of chronic migraine pain & vertigo severity (as well as the fact that I live alone in new york & dealing with this alone in new york blows), I’ve been incredibly aggressive with treatment, taking advantage of everything nyu has to offer (vestibular therapy twice weekly, overhaul diet & starting up with a nutritionist, go to the gym regularly, as well as soon starting with vestibular psychologist, getting prescribed botox, etc — I even gave up TV for a week) – and all of these combined have seen results in a short amount of time. It’s definitely not an overnight difference but every week I see some level of improvement.

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Thank you so much, Primer!!! It really helps to have encouragement to stay the course with topamax. I think it’s possibly the most effective drug for MAV.

My final question about it is regarding whether you had any eye side effects on it in the night or early morning when you woke up - did you ever see tracers after lights or kind of starry vision at all?

I heard from someone else on here that that went away after she got used to topamax, but it was the one side effect that spooked me enough that I keep failing at my trials with it because I chicken out (although I realize the glaucoma side effect is super rare, and millions of people are on this drug!)

I also live alone in a big city trying to get my social life back to normal… and am trying to keep my job (very few people know i have this, which takes a lot of energy since I have to go to events and restaurants and pretend to feel normal, when i feel super super dizzy and light sensitive, and I also get severe migraines when exposed to too many stimuli – they are unbelievably bad).

However, most of the time it’s just like a drunken feeling when I’m not on any meds. Gabapentin was woking well but the side effects aren’t that great for long term use. I’d be very appreciative for your feedback about whether you experienced any strange side effects when you were first starting topamax as that might be reassuring to me that it’s not abnormal what I experience! Liv xx

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Hi Liv and primer Thanks both for your replies.

I’m up to 100mg now of the topamax/topimirate (I’ve just realised they’re the same drug…!!! dear me it even says on the bottle, swear I am losing the plot lol) I thought this was maximum dose, or at least it is the maximum that the Dr/GP has recommended I go up to for now. I’ve had pretty funny / not very nice side effects so far including; stomach cramps, tingly hands and feet, oversleeping (10 hours sleep instead of usual -7-8 hrs), I’ve felt a lot worse on them (dizziness, headaches/migraines and nausea) I’ve also had some cognitive issues in terms of memory loss and not being able to speak properly or recall words, forgetting the date and my birthday. I was quite worried about it and went to the GP about a separate issue and asked about it and they said it was normal side effects its just some are more sensitive to the side effects than others I probably should have gone up the dose a bit slower. I also feel a bit ‘zombified’ but I am getting there, the Dr said it is nicknamed ‘dopamax’ :smile: I’ve been on 100mg now for about three weeks so have definitely not given it three months to ‘settle’ in my system so now that you’ve said that I will definitely be giving it a bit more time I think i’ve been expecting it to be working or seeing improvement every day (it probably doesn’t help that my husband asks me every day if I have seen improvement and I feel dreadful on it most days).

I have been told virtually nothing about diet, vitamins you mention or VT I have noticed no connection between eating certain things and migraines but as my symptoms are 24/7 would it be worth trying this diet? (I’ll look up the website you listed) how would I figure out my food or normal triggers if its 24/7? does this still apply even if mine are suspected hormonal? I often wonder this when I see triggers, how can we identify triggers when its constant?? I don’t understand that :S As for VRT I do try to walk at least once a day 15-20 minutes (although not been able to past few weeks as these tablets have made me feel pretty crappy), what else can I be doing for? my BPPV Dr from ENT has advised a Wii balance board, are they any good for VM? What other lifestyle changes can I make? I struggle with moving images on screen. Whats the optokinetic video you mention? will that help with that? I’m willing to try anything. Ahhh I always always take pain killers when I get a really bad migraine, no doctor has ever said don’t take any?! That’s interesting indeed! And also interesting about the cannabis, it is illegal over here so it is quite hard to get hold of but I know that it helps patients with nausea so it makes sense it would help with nausea, I wonder if it would help? Interesting again, thanks for your the help and advice you provide! xxx

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Hi @liv85 - I do get increased migraine aura (ie: fairy lights around my eye lashes) whenever my doctor increases my topamax dose (that’s your body reacting to increased seratonin levels) - it levels out after a few weeks and then almost all migraine aura disappears.

Here’s my advice (you’re not going to like it but it’s for your own good!): buck up & take the topamax. Stop thinking about the side effects and start thinking about the benefits. Don’t approach it as a trial, approach it as a solution. Like you said, millions of people take it every day. Join those millions and get your life back!

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hi @dizzy247 , welcome to topamax hell!! it effing sucks – but after it’s in your system for a long time (read: three months), you will begin to see and feel improvement. Regarding the side-effects, the first few weeks are the hardest and then you get your energy back. Promise you’ll start to feel less of the side-effects soon enough. Now, onto the fun stuff: living with vestibular migraines.

Here’s the bread & butter:

  • Vestibular therapy - Vestibular therapy is like physical therapy for your eyes and balance. Ask your doctor if there is a vestibular therapist you can start with. I know things are different in the UK, so if there isn’t immediate access to a vestibular therapist, here are a few basics: print out a capital letter B (in helvetica font), paste it to the wall at eye level when sitting down (be sure to have zero eye distractions on said wall). Slowly nod to it for 30-seconds; close your eyes and wait at least two minutes (or until you return to your baseline of dizziness). Return to looking at the damn B: slowly shake your head side to side (as though saying no) for 30-seconds, do that three times a day. If the B ever gets blurry, slow down. After you get used to your Bs, work up to doing it for a minute. Then do it for a minute, standing up!

Here’s a link to the optokinetic video. Try watching that 2x a day, see how long you can watch it (my first time was only 9-seconds and I almost hurled so don’t beat yourself up if you can’t do it for long).

Let me know if you can’t get access to a VT, and I’ll try to walk you through a few more of my basic vestibular therapy sessions - things like walking down a hall, etc. Regarding the Wii, I think it will be too provoking for you. I also got the Nintendo Wii for balance therapy last year but it made me way too dizzy… in the spring when my dizziness improves I can use it to improve balance and do at-home yoga but for now it’s way, way too provoking.

  • Screen time - Limit how much time you spend in front of screens (when my migraines get really bad, my vestibular therapist even bans me from screens entirely). With computers, there’s the 20/20 rule: 20minutes on screen, 20-seconds off-screen. I limit computer, phone & tv screens as much as possible - so much that I now respond to emails over the phone!

  • Exercise - It sucks but we have migraines. And one of the most effective ways to combat migraines is with daily, steady exercise. On days I don’t have vestibular therapy, I ride a recumbent bike for 30-45minutes (I started with 15minutes) – we figured it was the safest machine because I could do it with my eyes closed while still getting some level of cardio. I also walk my dog around the neighborhood and walk to all of my appointments. It’s hard but exercise and walk as much as you can. Don’t shut yourself up at home - it’s the worst thing you can do to yourself.

  • Vitamins - Have you ordered them yet? Discuss with your doctor (you most likely will need bloodwork done) but here are the ones they typically recommend: Magnesium, Fish Oil, Butterbur, B-2, D (I also take ginger to help with nausea). I typically order on amazon and then have them on a fulfillment plan.

  • Diet - This may be the most important component because almost everything we casually eat provokes a migraine. So yes! Learn everything you can about the migraine diet. Every delicious cheese, every cured meat, every glass of wine, every slice of hot homemade bread has the potential to make you dizzy. Pizza pretty much guarantees a dizzy spell. The first thing you do is create a food diary and only eat chicken and rice (boiled in water or 1% milk - not store-bought broth – you must avoid msg & yeast). Then each week begin incorporating a new food from this very fancy comprehensive Yes / No list (print it out & keep it at the ready always) - this will help you identify trigger foods, etc. When you have the basic chicken & rice diet with yes foods (fresh yams, fresh potatoes, broccoli, etc), you establish your baseline (mine originally was a pain level of 7/8); if you eat something that makes your baseline even worse, then it’s a trigger food (I remember one day I ate roast beef and was like fuuuuuuck. now this is a trigger food.) The slight benefit is that if you’ve been trying to lose a few pounds, you will. I lost a stone!
    And, as I previously said, Joy Bauer has helpful articles about how to further adopt the migraine diet. And there are a hundreds of helpful posts in this forum about diet as well (mvertigo.org is the reason I now make my own chicken broth every week). The main thing is to keep it fresh, avoid msg, avoid caffeine, avoid trigger foods (you could be like me and have a ton of trigger foods). The good news is that the food in the UK is a heckuvalot healthier than it is in the US - so at least you have an edge on us.

Glance of what I eat one day:
Breakfast: Veganic Maize cereal (high in riboflavin!) with 1% milk, side of fresh strawberries
Lunch: Hemp protein shake with spinach, apples, ginger, cinnamon, agave
Snack: homemade granola bar (rolled oats, cinnamon, honey, turmeric – I make a big batch each week) or yam pudding with granola
Dinner: Rosemary sage chicken (boiled with carrots, mushrooms, sage, rosemary, turmeric, coconut oil), yams and an arugula salad.

OK Drinks: water, aloe vera juice, pellegrino (highly recommended by neurologist since we’re on topamax - has something to do with electrolytes. he said to drink lots of water & pellegrino), 1% milk, hemp milk or rice milk (all the milks because I’ve been trying to gain back a bit of the weight I lost)

It’s super important not to skip meals, which is why I make homemade granola bars (I use this recipe but switch out flour for rice flour & butter for coconut oil) by the barrel. I’ve gotten to enjoy cooking quite a bit and at least can have some level of control over not provoking more migraines and dizzy spells (they have gotten better - promise). Also, I now sound like I live in LA whenever I talk about food… it’s something I’m coming to terms with :princess:

  • Managing Migraine Meds - Have a serious talk with your doctor about abortive meds (unsure if you have abortive meds in the UK or not… still jealous that you get paracetamol, tbh) but don’t take pain meds because they’re guaranteed to cause rebound headaches. Abortive meds are tricky because you only take them for the big kahuna (ie: I only would take them for the ones that would land me in the ER) and you only can take one every 48hrs. For now, avoid taking pain meds when you get your next migraine and see if that cuts down the second one that immediately follows. If that works, it could be that you just need an abortive med to help manage the 1 or 2 painful migraines you get each month (jealous about that too, btw).

  • Do your research - Since being diagnosed with intractable & vestibular migraines, I listen to as many podcasts & audio articles about migraines as possible (currently 50 Things You Can Do Today to Manage Migraines). Audible has quite a few audio-books and articles about migraines and I encourage you to educate and empower yourself as much as you possibly can (do it via audible so you don’t have to strain your eyes).

  • Homeopathic Goodies - Peppermint Oil. Get it immediately. Keep a vial in your purse and smell it every time you feel nauseous (peppermint altoids also are helpful). It will change your life. My friends also gave me this headache ease balm - unsure if you can get it in the UK or not but it helps some with migraine pain. Try this soak for Topamax legs (I have FMS and get serious tompamax legs - piping hot eucalyptus bath soaks are the only things that take the pain away).

Ok. So, to recap: vestibular therapy, avoid screens, get your vitamins, exercise, adopt the migraine diet, do your research, manage your migraine meds and indulge in a few homeopathic goodies (seriously get the peppermint oil). This should help you get on the path to feeling better. It’s hard but be aggressive with your treatment & adapting your lifestyle - it will help you so much.

There’s a super helpful post within the forum about the basics of having vestibular migraines (I’d search for it but i’ve hit my screen limit for the day & i’m seeing double - yay!) - it’s basically the bible. Ask your husband search for it and print it out for you. It could have repeats of what I typed but it has some very helpful information in there, too (I believe it was written by an English neurologist). The first step to feeling better and gaining control is establishing boundaries and understanding your limitations. You’ll get there - you just have to start understanding the condition first.

Hope this helps!

1 Like
11

@dizzy247 here is the link to the vestibular migraine survival guide. Ask your husband to print it our and read every word. Hope that you’re feeling better (and more hopeful!) today!

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Hi Dizzy247 and Primer, I really appreciate the reassurance about the fairy lights regarding topamax. I am going to stay on 100mg of gabapentin 3x per day though for the time being as I sleep better and am a more stable mood on gaba than topamax. I think I’m just highly sensitive to all drugs. It’s a bummer. Gabapentin makes me sufficiently less dizzy that I am able to horseback ride and go to the gym and have somewhat of a normal social and work existence, although once I’m exposed to too many CFLs I crash and get a full blown migraine and the terrible off balance feeling. Nortriptyline also helps some people, dizzy247, so if you want to try that you might have success. I responded very well to 10mg of it (taken 12 hours before you want to wake up) but only after the 1st week, which ironically made me feel dizzier, but then it started to help dramatically. Unfortunately I get rare side effects (cardiac) from nort. so I am on gaba…until I go to topamax perhaps. xx

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p.s. CFLs are those compact fluorescent lights they use now to be ‘environmental’ that have very very high flicker rates since they are compressed fluorescents.

14

Hi,

Thank you so much for all of that information I have been reading through everything and trying to digest all of the information. I clicked the optokinetic video and within a few seconds it wiped me out completely - room spinning and all sorts, oh dear :S I sometimes get that when I have been reading on the computer for too long especially on white against black like on this forum. Interesting that you mention not taking ibuprofen and paracetomol too as I take them quite regularly when I get migraine, I am quite good with pain and have a particularly high pain threshold but they are quite too much to bear even for me so I relent and take them, I will try and avoid them from now on. I will be taking all of your advice on board and looking into the diet and the supplements mentioned, I have had some good news that I have had an appointment through for my neurologist and he is a migraine specialist (I think this might be because I kicked off at my GP that I haven’t been sorted for 2 years and demanded he sorted me out as this appointment has come through very quickly), so I am hoping that he is able to advise me further. The Topamax seems to be doing something also, I don’t feel as nauseas or as off balance the past few days but still have the other symptoms (tinnitus, foggy head, head pressure, headache) but I can cope with those to be honest, it’s the nausea and imbalance/dizziness I cannot stand. The side effects of them are still bothering me a little bit (confusion, memory and tingles) but they seem to be the only tablets to date that have done anything so what am I to do :smiley: really appreciate your replies and sorry for my really downbeat post, I am usually quite positive, just having a really ‘at the end of my tether’ sort of month/time of it! hopefully things are looking up. I will keep you all updated with progress and what neurology says.

15

Sounds great, dizzy.

Keep it up and keep us posted :smile:

16

Sounds like progress, @dizzy247!

With the leg tingles, add some potassium to your diet (ie: coconut oil). That should take care of it quite quickly. X