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
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)
-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
-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
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:
for the mav:
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:
- Do my symptoms sound like migraine associated dizziness? or more like VN? even symptoms that are 24/7?
- 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?
- 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 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