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Ieeee · 08-14-2008, 02:19 AM

have done some reading and am wishing to see if anyone has any advice for me please

2 years ago i had a flu vac.
i had immediate reaction to it ....adrenaline and steroids and ER
10 days later i had monster onset of what turned out to be vestibular neuritis....total loss of balance on one side.
hospital for 8 days and came home to eventually be diagnosed properley and start at what has been a very long and wearing rehab process to regain my capacity to stand straight. i am about as good as i will get right now balance wise and worry about loosing sensation in my feet in terms of balance.
i have have loss of sensation and huge pain

after i got out of hospital i noted that my feet were sore.
at about 12 months i was noting it daily and eventually went to a neurologist who said i had small fibre neruopathy 6 months ago.

i was sent to have blood tests and return in 6 months.
initial discussion was had re the drugs available.
also that i might try B6 to see if it worked..it dosnt

my blood tests are essentially non indicative for this PN.
i didnt have a fasting glucose but i had fasting blood sugars and whatever the test is that tells what your blood sugar has been for the past 3 months
all normal. i dont have any obvious immune disorders tho i do have indicators for inflammation.
which is not suprising

since then i have learned something of the disease.
and it is flaring rather badly

for other reasons i will not be able to use the anti depressants nad most of the epilipsy ones ( I have an electrical problem with my heart and that counter indicates a number of drugs of these classes)
neurotin is a possibility but the docs i am dealing with dont seem to be too good at checking side effects so i do it myself nad usually call the drug companies .....which usually works tho i wasnt mad about the info from the neurotin people here.
the cost will be a huge issue as would be any trial of Lyrica.

also i have to be very very aware of my balance issues.
i have not fallen yet but i dont wish to.
i have had a hip replacement and have extensive osteo.
i have had recent CT to check that the PN is not disc related.
i do have leg pain from that but it is not the same.

i have had about 6 weeks of trying Zostrix HP cream but it seems to have had no effect.
i will keep at it longer.

i am also limited in the drugs i can take for pain.
morphine/codine makes me soooooooooo sick.
tramol takes away my brain for a long time and i am barely functional.

i return to the neurologist in two weeks.
i am not surei want to go thro the pain of EMG (had one with carpel tunnel nad can still remember it 15 years later

it has been cold her lately and i seem to be worse.
certainly if i have somthing cold in my hand it sets off my symptoms
i am getting around in double socks and gloves.
but dosnt appear to be renauds

the neuro reckoned it was worse in the heat nad i believed that .....til it got cold !!

i started on some statins about 3 months ago which have done a great job on my enormous cholesterol
today i started with hypno to get some weight off to try and get off the statins.

i am not sure that i can blame them for the worse pain but there is only one way to find out......get off them and check it i guess

i also tend to rather like my diet pepsi and see that here nad elsewhere this has been suggested as a no no

sorry for the long post but i will be grateful for any thoughts from those who have been around longer than me.
what might i look to asking my neuro.??
she actually wanted me to have an abdominal doppler if the pain went up my legs and i am having that next week.
in case i have an aortic aneurysm.

many thanks for any help

Aussie100 · 08-17-2008, 10:47 PM

Hi, the fasting glucose test or the HbA1c are not good indicators for prediabetic evaluation, which in some people can damage the nerves as much as a full blown diabetic, i am wondering why a 3-5 hour glucose tolerance test wasn't performed, don't believe anyone who says that you must be a full blown diabetic to get nerve damage, of course that is only one possability out of many, have you been tested for B12, thiamine, folate levels ?

Ieeee · 08-18-2008, 05:42 PM

Quote:

Originally Posted by Aussie100

Hi, the fasting glucose test or the HbA1c are not good indicators for prediabetic evaluation, which in some people can damage the nerves as much as a full blown diabetic, i am wondering why a 3-5 hour glucose tolerance test wasn't performed, don't believe anyone who says that you must be a full blown diabetic to get nerve damage, of course that is only one possability out of many, have you been tested for B12, thiamine, folate levels ?

thanks aussie

i did see that comment on another post

my GP didnt think the 3 hour necessary

i will ask the neuro what she thinks next week.
i think every other aspect of my blood has been tested including B12
i also have hemacromatosis gene but my levels there were ok and i keep them ok

it is so very weird tho that i had no symptoms pre loss of balance ...and then feet symptoms within days of getting out of hospital

my pain levels are related to activity for one and worse at night for two.
i was told that the latter would probably be the case

i am actually on a weight loss program... finally.... now so that should help if there was a prediabetic situation happening.
i have a sib with diabetes but weirdly the two of us seem to have inherited totally different *bad* genes.

i think my issue, assuming this is idiopathic, will be pain relief

all the best

Aussie100 · 08-19-2008, 03:20 PM

Hi again, with all the trouble i had initially being diagnosed with uninformed doctors when i first got pn, i am not surprized at all that any gp would say the 3 hour GT test unecessary, but seeing you say you need to diet any neuro that is up to date with current neurological findings, shouldn't hesitate in ordering the test, seeing every other test is coming back negative.
But i also am wondering about the virus that caused you ear problem, if there is any connection to your current symptoms, what are they saying about that ? seeing your still got balance issues which is normally associated with the larger peripheral nerves or that nerve in your ear is still inflamed some what.
I personally wouldn't leave any stone unturned looking for a cause.

best of luck anyway
Aussie

Ieeee · 08-19-2008, 11:23 PM

Quote:

Originally Posted by Aussie100

But i also am wondering about the virus that caused you ear problem, if there is any connection to your current symptoms, what are they saying about that ? seeing your still got balance issues which is normally associated with the larger peripheral nerves or that nerve in your ear is still inflamed some what.
I personally wouldn't leave any stone unturned looking for a cause.

best of luck anyway
Aussie

yes
i am trying to get info on the PN and the vestibular neuritis which caused the total killing of my vestibular nerve

connection to flu vaccines and balance ???

i also now have another potentially more of an issue.....spiking blood pressure.
i am looking for info as to whether it is associated with balance issues.....one reference said yes but i havnt found any other but am checking elsewhere

i am sure that if the neuro wants the 3 hour glucose she will get it

i will discuss it when i see her

there is such a clear conncection (to me) between the PN and the balance loss which was preceeded by a reaction to a flu shot
to prove it is seemingly impossible
no one will allow the connection tho there is some refrence overseas

thanks

if only i had not had the flu shot

Aussie100 · 08-20-2008, 02:50 PM

I hope your neuro can nail this down for you, please let us know how you get on next week, best of luck to you.
Aussie

Ieeee · 08-27-2008, 06:57 AM

thanks guys

it is next week i go .........i think
this last week has been eye problems

i didnt have any issues with the diagnosis being made as small fibre.
it was a shoo in really.
having done eyes this week, next is neuro.
or is it the dental full out deal next week??? LOL

i am making a list of questions and i usually do.
my main interest is to find if there is a link between the flu vacc that appears to have killed one vestibular nerve and anything else.
my blood pressure is spiking again to the 200/120 range for no reason that is known.

or to discuss if the killing of my vestibular nerve was in fact a stroke in the basilar artery.
which distinction may well not matter but i wasnt initially dignosed well and it was a ??

all to complicate isnt it.
and so dam painful
the prices on neurontin and lyrica are enough to make me feel quite ill

thanks for the help ........it is appreciated :-)

adding......i have high triglycerides and have one month to see if they get better with a bit of weight off.
they have come down from extraordinary levels with Lipitor along with my cholesterol, but they are at levels still that say i will have to accept that they are so called "familial" and wont respond to weight loss.

violet6 · 09-06-2008, 06:01 AM

Ieee--

I usually post on the inner ear health board, where many of us with vestibular neuritis talk about our issues. I found your post online b/c I was searching for flu shot/vestibular neuritis. I also had what appears to have been VN two weeks after the flu shot. I am still sick, 9 months later. I only recently realized the possible connection. VN is, after all, associated with various viruses. I had flu-like symptoms in the 20 minutes or so preceding the dizziness. I did report my situation to the CDC...you can fill out forms regarding possible bad reactions to shots. They seemed very interested in my case. Please consider doing this as well. You do not have to be sure of the flu shot being the culprit. It just lets them know there might be an issue.

How are you doing? Have you found any relief? Curious about your experience.

--Violet

Ieeee · 09-07-2008, 05:05 PM

Quote:

Originally Posted by violet6

Ieee--

I usually post on the inner ear health board, where many of us with vestibular neuritis talk about our issues. I found your post online b/c I was searching for flu shot/vestibular neuritis.
--Violet

sorry to hear your story violet
umm

interesting isnt it?
i am not in the USA but did report here to the relevant place and to the manufacturer.
that is as far as it goes here.

i am not *sick* ....simply lacking any balance capacity on the left side as it is proven to have no vestibular function at all.
i have done VRT exercises to help my brain to compensate and had recent assessment with a physical therapist who does only balance disorders.
i have a bit of compensation to go and need to do more exercises.
she assessed me not long after i got out of hospital so has seen the progress
which exercises i am bored to death with i might add

it takes nothing to put my balance off........i went to a new shopping mall the other day and was seriously out of balance like i was right at the beginning. i coped better probably ....but left asap.
i am having serious dental work again today and have someone on call to come and get me if the stress (and it will be stressful) puts my balance off enough so i wont drive home by myself in peak hour traffic.

my PN was again assessed the other day with no offerings of any further ideas......except for me to try clonazepam for pain.
ummmmmm
got to look into that
it is a vestibular suppressant
the neuro world is very specialised and so my balance neurologist is not my PN specialist
neither is very well versed in the world of the other......which i find scary.
but i dont need the balance guy anymore really as the only thing i can do for the balance is something that is best guided by the physiotherapist

good luck to u and i hope u get better

i belong to a UK based forum which has been helpful.

adding.....the neuro refused to make a conncection between the vaccine and the PN.
the balance neuro refuses to make a connection between the vaccine and the balance
PN one reckons that if it was connected i would have had differnet symptoms and also have been getting better by now.... as opposed to worse

that is as far as they will discuss it.
i would imagine they are being very very careful in terms of comments that could be interpreted by me in any way that i could use if i was to take this further in legal terms.
cover backsides being the name of the game

Ieeee · 10-21-2008, 05:27 AM

Quote:

Originally Posted by Aussie100

I hope your neuro can nail this down for you, please let us know how you get on next week, best of luck to you.
Aussie

this is a very belated update

nothing has changed except i am worse

i have had just about every bit of me checked out as one cause of PN is a malignancy says my neuro.

i have samples of Lyrica to try but keep putting it off as i cant afford it anyway

the pain is getting into my hands nad i dont know which is worse ...feet or hands

not feeling very positive at the moment

Aussie100 · 10-23-2008, 10:13 AM

I am sorry to read that you haven't had any luck yet in finding the cause, but may i suggest that you have a talk to your doctor about the medication, your gp may be able to request an authorization off the goverment to give you 3 packets of meds for the price of one, i know they can do this with certain meds, i used to get 3 packets of Tramadol for the price of one, might be worth looking into.
take care
Aussie

rudiraven · 10-23-2008, 01:07 PM

I noticed in one of your posts that you are taking Lipitor. This could be a cause of several of the problems you are having. Statins are known to cause PN even though most doctors either don't know or won't admit to it. Please do some research on your own. I can't mention any websites but if you research statin side effects I'm sure you will come up with some information that will be helpful. I suggest you start taking COQ10 supplement. Statins deplete the body of this and other important substances needed for muscles and nerves. I wish you well.

Ieeee · 10-24-2008, 10:39 PM

thanks aussie

i didnt know about the 3:1 deal.
i can only take Digesic sadly which is not a PBS thing and is private script only.
tramol messes with my balance and my head for well over 12 hours on either sustained release or regular.
i just cant take it

i have spoken to the GP and the neurologist and the pharmacits all around and there is no way i can get any sort of reliable supply for other than the full price.
i can get some samples here and there but nothing consistant.
my local pharmacit tells me that there is no move afoot to have the lyrica or neurontin on PBS any time soon

i may well have to look into that and see what one has to do to change it

thanks

:-)

Quote:

Originally Posted by Aussie100

I am sorry to read that you haven't had any luck yet in finding the cause, but may i suggest that you have a talk to your doctor about the medication, your gp may be able to request an authorization off the goverment to give you 3 packets of meds for the price of one, i know they can do this with certain meds, i used to get 3 packets of Tramadol for the price of one, might be worth looking into.
take care
Aussie

woondog · 10-27-2008, 11:06 PM

Alson, you can buy drugs from Canada, Mexico and maybe, Germany on line.
I did it for years and it saved me a lot of money. woondog.

Ieeee · 10-30-2008, 09:12 PM

Quote:

Originally Posted by woondog

Alson, you can buy drugs from Canada, Mexico and maybe, Germany on line.
I did it for years and it saved me a lot of money. woondog.

thanks woondog
i have bought other stuff from the USA in the past and have thought of buying these drugs.
at the moment i think the aussie dollar is soooooooo bad that maybe not a lot would be gained .

but it is something i have to look at

and thank u for reminding me

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