Hi guys
I hadn't realised it had been so long since I let you know how things were going with the topiramate that I have been taking for my dizziness and vertigo. It's been a little over 4 months now that I have been taking it slowly increasing the dosage to 125mg daily and can honestly say I have not really had any breakthrough yet. I will say that for the last three days I am having a steadier, clearer time of things but if you have read my blog and know a little of my experience and my vertigo hell you will know from time to time I get these random moments or days were my symptoms become less intense before they kick off again. So I am not currently thinking it's the topiramate that has caused this steadier time as for last 4 months I have been pretty much the same heavy headed, unbalanced swimmyhead I always am.
I was doing very well as far as having no side effects from the topiramate that was until I hit 125 mg. About a week in I noticed my sense of taste and smell completely vanished and has not come back. I have already lost my sense of balance I don't fancy losing another two senses. I have a trip to the doctors anyway next week so that will be discussed. Maybe it's time to try something else. In fact I personally feel it's time to head down a completely different route, away from the vestibular migraine diagnoses. There are many reasons as to why I am feeling this way. I will leave that for another post. There is lots I need to talk about with him. It's 10 years this month that this all happened to me. I don't want to do another 10.
Take care guys
Swimmyhead
I am so glad I found you. I am from the USA and I have been suffering the same for over a year now, since last May. Everyone seems to think that since it hasn't gone away by now it must be all in my head or that it can't be as bad as all that since most people only have it in boughts or it only lasts a day or so....you give me courage for I find even leaving the house to be a very frightening experience.
ReplyDeleteHi Jen
Deletei am so glad you have found me and that my story helps you in some small way. It is why I started to write this blog and share my story so that others such as yourself know that your not alone dealing with this. I am truly sorry you have been suffering with this. It's a very debilitating condition to deal with for many obvious reasons. Especially for you and i as there is no let up.It's 24/7. One of the most frustrating aspects is that others will find it hard to believe you can feel so ill all of the time,yet look so fine. if only they knew. I am sure you have heard "get out more" or " try not to think about it and "is it really that bad. These comments are frustrating especially coming from friends and family who must see your not the same person as before. Try not to concern yourself with what others think as there opinions make absolutely no difference to your situation. Just shrug it off.
I know people who have had bouts of dizziness and vertigo lasting weeks who cannot believe I can feel like this all of the time as their experience was so horrendous it just can't be possible.Unfortunately it is.
I know and you know all to well how REAL and debilitating this is and that it is all of the time. Trust me Jen we are not alone. Many others have contacted me over the years who have to deal with these crazy awful symptoms all day everyday.
I know exactly how you feel about leaving the house.Especially in the early years. Even now I have to psyche myself up to go for a walk and still get a little nervous if i have appointments to attend.
There is hope though Jen. People do get better. Even after years.It's about finding the right specialist, getting the correct diagnoses and receiving the right treatment. Don't give up looking for answers. You have been ill for just over a year which is way too long and I know feels like a lifetime but it's very early days there is absolutely no reason as to why you won't get better. Better days might be just around the corner.Who knows 12 months from now you might have put this ordeal behind you. It's absolutely possible.
I was wondering how did you dizziness begin? was it sudden or did it slowly creep up on you?
If you ever need to talk feel free to contact me whenever you like. You can leave a comment here on this blog but it is public. You can PM me on twitter or you can use the contact form on my blog. It is on the right hand side. You simply enter your name, add your email address and write your message and click send. This way your email address WILL NOT be public nor will any messages you wish to send. They will be delivered directly to my email inbox.
keep pushing on Jen. You never know what's around the corner.
Jen's story..........
DeleteI was diagnosed first with BPPV I'm not sure what that was "Benign
Paroxysmal Positional Vertigo" with "Nystagmus" then that was changed
to "Vestibular Labyrinthitis".
I find my family to be very supportive, fortunately, but friends forget
you over time. I understand, their life goes on while mine is in a mess of
a standstill. And my patience wears thin, I get really tired of
hearing "oh, I get dizzy too" whenever I say something would be really
hard for me and why, oh if only I just "got dizzy too"!
The worst is the doctor, first I was told it would be gone in two
weeks, then usually four to six weeks and then six months and here I am on
day 400 and nothing much has changed. Healthcare in the United States is
very money oriented (greedy). At first I was self employed, health
insurance runs me around $910 a month with a deductible equivalent to two
years of my income, or what was two years of my income and once the
deductible is reached then they only pay for 40% of any expenses. Now I
cannot work, I can't qualify for aid without selling my house and getting
rid of my life savings. We are suppose to have disability but I can't make
the 100 mile trip to their doctor to confirm the diagnosis, so I find it
quite ironic that I am too disabled to qualify for disability! I am making
these comments public for something really needs to be done about
healthcare in America.
Now, after over a year of meclizine and valium, the doctor wants me to
see a neurologist, the problem I have with that is; the nearest one is 25
miles away. I can't drive and I find riding in a car to be horrid, it is
too much of an assault on my senses- last time I was in the car with my
daughter, we were on one of the main roads in town, speed limit 30mph and I
thought she must have been going 50! I said, "wow we are really going
fast" and she said we were only going 20mph! I do really need to get to
the neurologist to move forward, do you have any suggestions as to how to
make a car ride more tolerable? I usually end up with horrid nausea and a
splitting headache that lasts days just riding through town. When I told
the doctor I didn't think I could make it that far, 25 miles on a 60 mph
highway, he acted like I was really weird, said "I thought you said you
were getting better" I am in that I can ride my recumbent stationary bike
and not have to hang on for dear life, I can work out sitting and some
standing, I can walk on my own with a walking stick, I'm not puking my guts
out, I can eat, I can shower as long as there is someone around while I
wash my hair. He's begun to drop other hints that perhaps I am not right in
the head, anxiety...well, this is anxiety provoking - and like I am
agoraphobic or something, he asked if I had always been like that, not
wanting to go out. He said he would see what he could do and I have heard
nothing. Went in a couple of days ago for a vaccine (and that provoked
more symptoms and exacerbated the dizziness) and I didn't even see him,
although when I went for the first round of this vaccine I was told really
haughtily by the nurse that I couldn't get a vaccine without seeing the
doctor first. I feel like he has given up on me.
The appointments are hard, I had to sit in the waiting room for half
Deletean hour just to get the vaccine and the carpet is checked and the lights
are bright and he is on a busy street so there is traffic going by both
ways and shelves with the usual magazines an drug sales, and the TV is
blaring and people are walking in and out, the door is swinging etc.
Towards the end of the half hour I was wondering what they would do if all
of a sudden I stood up and screamed that if they were going to make dizzy
people wait so long in the waiting room they could at least not have
checked carpet! I was near tears.
I was wondering how your dizziness began too??? With me I am not sure.
I felt fine, one night I got out of bed to use the restroom and was fine,
went back to bed and rolled over and noticed that the room was spinning,
began puking, thought it was a stomach bug. That lasted about two days and
I began to feel better and went back to life as normal, noticed that when I
went to mass that I sort of lost my balance when I went to drink from the
communion cup, a sort of falling back sensation. Then Monday I went back
to working out like usual and all of a sudden, in the middle of doing
aerobics I felt really dizzy and had to stop and sit down and it just got
worse from there on until I went to the emergency room sitting in a chair
and hanging onto the counter to stay upright while they checked me in. Now
I am not sure if I really had the stomach flu or if that was the beginning,
or if I hadn't fully recovered and shouldn't have been working out yet and
that was the beginning...
Thanks for the positive attitude, I have a really hard time with
hopelessness sometimes. It is such a struggle just to walk! Balance is
something people take for granted and so they can't understand not having
it, or the weirdness of closing your eyes and not knowing if you are
upright or not, or lying in bed and before you open your eyes not knowing
what side of the bed you are facing.