I'm trying not to get my hopes up...

[DeniseJP]

Advocate for yourself just like you do for your bunnies... I learned the hard way when Andy was born. Apparently, when a baby born to a diabetic mom arrives, his/her blood sugar will drop as baby gets used to life on the outside. This was after a labor that lasted 4 days - 1 day on prostagladin gel and three days on Pitocin. They are lucky I did not take someone's head off during that experience.

When Andy arrived, they let me bond with him and then they sent him to the nursery where he had a seizure and the found his blood sugar to be 20 (normal is 70-115). They gave him fluids to raise the number and then this neonatalogist came in to tell me that he wasn't sure if Andy had brain damage. Nice, eh?

Andy is now 19 and has had a learning disability.

When Benn arrived in a new town with a new doc, after the experience with Andy, I told my doc to get him to the NICU to check his sugar. They did as I asked and they caught Benn's blood sugar going down and they were able to help him. I also did not have the repeat of labor gone bad... this doc said "He's way too big" and they did a C-section. Andy was 9.4 lbs and Benn was 11 lbs, 14 oz. No matter how you measure them, they were big babies.

Sorry for my rant...but you know your body best and no doc has all the answers. I had a diabetes doctor that was an absolute idiot... he told me over the phone to rub a lemon on the spot where my insulin pump needle went in, after I told him I thought it was infected. I actually had a bad staph infection there - luckily I taught the daughters of a infectious disease specialist and his wife told me to show him the site and he said it was badly infected and he called the prescription in. I'm ranting again... sorry... I feel what you are going through!

Best wishes that they can find out whatever it is that is causing the dizziness....

Denise

 

[kherrmann3]

I am sorry to hear that you are feeling crummy! Big bunny hugs from across the pond are in order! :hug:

From what I remember from Nursing school, there are plenty of things that can cause dizziness. Here are the few that I remember (simple & complex reasons!):
- Migraine headaches (I don't recall if they've dismissed these already...)
- Brain injury
- Stroke or heart attack (normally only happens in an acute form, not chronic like yours)
- Peripheral neuropathy (have you gone to a Neurologist?)
- Cardiac problems (my boyfriend, Will, has cardiac arrhythmia, and it causes dizzy spells at times).
- Meniere’s disease: I believe I spelled it right, and it's a condition where your ear makes too much fluid on the inner part, which causes vertigo (dizziness).

I know about doctor's not listening. There have been a few times where I wanted to snatch my medical file out of the doctor's hand and smack them across the face with it. Trust me, I've seriously thought about it. :biggrin2:

Have you only gone to the Ear/Nose/Throat doctors? I would maybe consider going to a cardiologist or neurologist just for the sake of going.

In the end, you're still your wonderful, bubbly, bunny-loving self! Your bunnies won't discriminate you for being a bit wobbly on occasion! I hope that the CT scan can help shed some light on your dizzy-problem!

 

[mouse_chalk]

Yeah I've seen a neurologist! He pretty much ruled out 'anything sinister' with an MRI and said he didn't know what was wrong with me :rollseyes

I saw another ENT who said that he thought it was Migraine Assisted (or is it associated? Can't remember) Vertigo and put me on anti-depressants, sleeping pills, and when that failed, anti-migraine medication. Well, that was horrific! I got migraines from the medicine and they made me feel like my face was melting. Anyway, so that wasn't it, so then that ENT gave up on me because he didn't know what was wrong. My original ENT said that he didn't know what was wrong with me, I don't think he really believed me actually, and also that if I was having these problems it was because I was overweight! Now I know I'm not the skinniest of girls, and I know that being overweight doesn't help your health, but I'm not like, HUGE, and it's vertigo, that prevents me from being able to work, drive or walk! Surely that can't all be caused by my weight?! My blood pressure is normal. Plus, I've lost over 2.5 stone this past year or so, and has my health improved? Nope!

So all in all, everybody so far has said that they don't know what's wrong with me, and given up. That's what makes me so mad. Even if someone was to tell me that I have such and such, and unfortunately I might never recover and might always be like this, that would at least be something definite. A diagnosis, that's all I want!

 

[Maureen Las]

The problem with most doctors is that they are type A personalities with a whole lot of OCD disorders rampant in the medical profession.

That means that if something doesn 'show up" on a scan or MRI that they get anxious and are clueless. They need definite proof on paper

Any disorder in between usual baffles them

If you are suffering from something terribly they only judge it in terms of whether it is killing youor not.
I have chronic fatigue syndrome and fibromyalgia.
2 disorders that do not fit into a slot and are not killing me.

trying to find a creative minded bright interested physician is like finding a really good rabbit vet
HARD but possible ..

you sound like you have a vestibular problem but from what I know it can be recurring

and if it wrecks your life it is serious as far as I am concerned.

Just believe in yourself and what you feel ,,,and talk only to those people who you feel have the intelligence to grasp your situation

'Hugs"

Maureen

 

[mouse_chalk]

Thank you Maureen- sorry I missed this before! You're right that I should keep trying... I will, it's just so hard sometimes to feel positive about it...


Steve spoke to my GP (in general terms obviously- my GP didn't discuss anything, just listened to Steve) and he agreed that the ENT doctor's opinion was a bit crap, and that I shouldn't be told just to live with it at my age. He said that in theory there's no problem referring me to anyone in the country that I want to see, but he wanted me to see another GP in the surgery first for a second opinion before he did so.

So, I went along this morning to see a different GP. He listened to everything I had to say, was very puzzled about what he could do to help since I've had numerous tests and seen all the specialists etc. I told him that I just didn't want to live with it anymore and I think I confused him because he asked me did I mean that I want to kill myself?!! :shock: I told him noooo, that I just don't want to be living on benefits, unable to work or have any sort of a proper life at my age, which he said was perfectly understandable.

Anyway, long story short, he said that he would be happy to refer me to the specialist in London. Supposedly she is considered to be one of the top people in her profession in the country, and on the forum I am part of for 'dizzy people' many people have done the same and get referred to her, and highly recommend her.

It will probably take forever though. Like, months. Steve still wants to enquire about a private consultation, but considering she practices privately on Harley Street, I would imagine that would be VERY expensive!

I'm really scared that even she or her team wont take me seriously and wont believe me, but I guess it's a step in the right direction at least.

 

[bat42072]

what are all of your symptoms if you don't mind my asking...,. I have chieri malformation type one.. and my nuerologist(sp?) said its missed alot of the time he only found it because he has seen it before...

also have they ruled out vertigo menears disease (sorry about my spellling) my mother has that and she can no longer be a jailer because she had a bad dizzy spell when she took a prisoner to court so she is now on dsability cause she can no longer hold down a job because of it

 

[mouse_chalk]

bat42072 wrote:

what are all of your symptoms if you don't mind my asking...,. I have chieri malformation type one.. and my nuerologist(sp?) said its missed alot of the time he only found it because he has seen it before...

No, I don't mind you asking at all! I'll list them all to make it easier lol:

Dizziness (as a sort of vertigo rather than light-headedness)- always feel like the room is moving, swaying, etc (like when you have too much to drink and the room spins?)

Feeling of walking on a boat in a storm- the ground feels like it's moving underneath me, making walking very unpleasant, and it's impossible to walk in a straight line.

Feel like I'm being pulled to the right when I'm stood up- queues in a supermarket etc can bring that on, or just moving around the house

Fall over regularly due to the vertigo/'pulling' feeling

Find it very hard to focus on things like TV, and sometimes my laptop as well- I have reading glasses and they don't help (I only have a very slight prescription)

I'm very sensitive to sounds, and multiple sounds in particular. E.g if we're watching TV and Steve talks to me, I can't concentrate and become very disorientated, and will have to pause/mute the TV before I can have a conversation. It's hard to describe but being in a busy place, or at a table where several people are talking all at once can sometimes be unbearable.

I have slight hearing loss in my right ear, which is the side I feel pulled towards

I don't sleep well at nights, and feel very groggy in the mornings especially- sometimes the dizziness is so bad I am phsyically unable to sit up or get out of bed until it eases (which I hate because I hate sleeping in, but sometimes I have no choice).

I quite often feel groggy throughout the day- almost like I'm looking at life through a handheld video camera that's shaking, and like I'm not quite there.

Watching anything fast-moving makes me feel much worse- for example the other day I was walking along the main road by myself, and cars were going past, and I honestly had to grab onto the wall to steady myself because I felt like I was going to fall over, and as the pavement was so narrow, I would have fallen into the road. (I don't usually go out by myself because of this danger)

Any sort of activity or anything vaguely strenuous makes my symptoms a lot worse- including housework, walking, shopping, etc. If I do a lot one day, which might be a 'good day', you can guarantee I'll be a write-off the next day.


All of those are always there, but they vary in severity, depending on my surroundings (i.e a busy place or sitting quietly at home), how tired I am, etc etc


I think that's about it lol- it's a lot to remember!

I can't remember why now, but they did rule out Meniere's early on. I really can't remember now actually...

 

[bat42072]

I am not a doctor but the symptoms are alot like my motheriin laws... have they done allergy testing on you... strange as it may sound they can control some of her symptoms by eliminating foods she is allergic to... it seems to help her some

 

[kherrmann3]

Hang in there, Jen! :hug:

 

[Boz]

I hope your able to find out what's wrong! I really do. I can't imagine being dizzy all the time.

When I had vertigo, that was the WORSE! Omg I cannot imagine having to go through that again. I couldn't even MOVE without throwing up. I closed my eyes to try and end the dizziness but it was no use, I couldn't escape the spinning world around me. It was unbearable. And it took me a few weeks to fully recover.


mouse_chalk wrote:

I don't sleep well at nights, and feel very groggy in the mornings especially

Hmm I think there's another reason for this, and it starts with a D!

 

[BethM]

Jen, today I'm experiencing a tiny, tiny bit of what you're going through, and it really sucks!

We had a huge weather system move in this afternoon. Jason and I were shopping for appliances, and rain and hail suddenly poured down for about half an hour. Just after it started, I got mildly dizzy, and it hasn't stopped. (This started about 6 hours ago.) I felt really "swimmy," mostly above my eyes. We wandered the store until the rain slowed down.

6 hours later, I still feel swimmy. I also have a lot of painful pressure in my sinuses. Not like a headache, though, just......painful pressure. If I try to focus on something, the dizzy feeling gets worse, and I feel like the room is starting to spin.

I am pretty sure mine is just sinus problems, related to the barometric pressure. I get sinus headaches every time the weather changes. This is the first time I've gotten dizzy like this, though.

Have you been able to get a CT scan? I don't know what the big deal with that is, why they don't want to do it. My ear-nose-throat doctor always has his patients do a CT scan, if they come back with repeated sinus infections.

A few years ago, I went in with a bad sinus infection. I had SO much pain. I did have dizzyness, and even veered in one direction when I was trying to walk in a straight line. I couldn't hardly breathe, and several times I tried to blow my nose, and actually blacked out for a few seconds and fell down. My hearing was impaired (which I actually didn't realize until I could hear again after the surgery), my sense of taste was impaired, and I had tooth pain. I also had ringing in my ears, which isn't quite as bad now.

Anyway, the infection didn't go away, after several weeks of antibiotics. So I was sent for a CT scan, which revealed that I had massive amounts of polyps in all of my sinus cavities. I had to go back for another round of CT scans, where they did a lot of scans, in every direction, which the doctor used to perform Endoscopic Sinus Surgery to remove all the polyps. (He said I had the most polyps he'd ever actually seen, and didn't know how I managed to walk.)

I improved greatly after the surgery, though I did have to have it done again two years later, as I re-grew the polyps. I may have to have it done again at some point in the future. My doctor thinks my polyps are due to my extreme constant allergies. The lab work on the polyps showed that they were non-cancerous.

This is probably not what you have, but some of your symptoms are similar. If you can get your doctor to give you the CT scan, at least you could rule it out.

Good luck!

 

[kherrmann3]

My friend had sinusitis and would randomly fall out of her desk in class (well, not so random. It was when she had to stand up). I don't remember what they had to do, but she needed surgery and it fixed it.

Here's another idea: Keep a barometer in the house to measure atmospheric pressure and write down the liquid's height (barometer readings) and log them. Also, log your symptoms. If it is sinus-related (or pressure), a trend could show with the barometer readings.

My friend's house is the only house I know of that has a barometer in it! I guess it helps her know what the pressure is doing (watching it go down over the course of a day) so she can prepare herself for sinus problems (they are only a fraction as bad as they were!)

Like I said before, hang in there! :hug:

Seriously, hang in there!

 

[kherrmann3]

Also, when you feel crappy, just watch this little guy go (as long as it doesn't make you feel dizzy)!

Think of it as a grumpy-looking version of Chalk!

 

[bat42072]

I talked to my mother in law and she takes dremaine (sp? for sea sickness) 1 tablet twice a day... I don't know if you can get it over there... she says it helps... you can also talk to your doctor and get a prescription for a better sea sickness meds. she says be careful though it may make you sleepy... but its the only thing that helps her and it took her several doctors to find out what it was... so keep going to doctors until they figure it out...

 

[DeniseJP]

bat42072 wrote:

I talked to my mother in law and she takes dremaine (sp? for sea sickness) 1 tablet twice a day... I don't know if you can get it over there... she says it helps... you can also talk to your doctor and get a prescription for a better sea sickness meds. she says be careful though it may make you sleepy... but its the only thing that helps her and it took her several doctors to find out what it was... so keep going to doctors until they figure it out...

I have used that prescription and it makes me sleepy with the labyrinthitis.

Oddly, I do not get seasick and on a boat, I am totally fine at home... it was funny to watch the more seasoned sailors aboard turning green as we towed one of the former America's Cup champions home from a race in Martha's Vineyard in the remnants of Hurricane Irene back in 2005...

Jen, hope you are feeling better -

Denise

 

[mouse_chalk]

Boz wrote:

mouse_chalk wrote:

I don't sleep well at nights, and feel very groggy in the mornings especially

Hmm I think there's another reason for this, and it starts with a D!

LOL! Actually, having Dotty has been good for me- even though I can't usually physically get up that early, I think it's good for me to be awake. I feel a bit more normal when I'm awake at a reasonable time in the morning- I mean, what person stays in bed/sleeps in until 9, 10, 11am every day?!


Beth, I'm sorry you're feeling rubbish too! The 'swimmy' feeling, along with a kind of swaying and 'pulling feeling' is everyday for me. It's always there in the background, but then somedays it gets worse than others. The absolute worst 'day' is what Boz described, when there's nothing I can do to relieve the spinning sensation, and I feel like I'm going to fall off the sofa/out of bed, and end up holding on. That's terrifying.

I never ever get any pains in my sinuses though, or headaches with it. I get headaches about as often as any regular person, except a while back when I had a sinus infection and had a constant migraine for about 2 weeks, which disappeared after antibiotics (I think I posted about that at the time actually). I am having a CT scan, but only because I asked for one out of desparation. The doctor wasn't that keen on it for some reason- he thought that an MRI would be sufficient. I'm waiting for the appointment to come through, but knowing the NHS, it could take a couple of months or more



I fell over earlier this evening. There was a kitten at our back window looking in and scaring Mouse and Chalk, so I got up to look. I was stood there, and all of a sudden the room seemed to slide to the side, and I fell over, in a heap on the floor. Luckily I didn't hurt myself too much, just banged my knee on the floor. I always get scared that I will fall when I'm on my own and hit something and injure myself I fell to the right, which is the same side that I always fall towards, and the same ear that has the decreased hearing. It's also the same ear that I feel 'flaps' when I swallow water, or blow my nose, or anything like that. It's really odd.. That's what makes me think it's my ears or something rather than sinuses....

I've not taken Dremamine, but I have taken prochlorperazine, cinnarizine, cyclizine, dom peridone, buccastem, betahistine, stemetil, (also zomig, sumitriptan, topirimate and amytryptilene when they thought it was migraine-related), and a couple more that I can't remember now. None of them even relived the symptoms a tiny bit, and most of them made me feel much much worse.

Denise, do you suffer from Labyrinthitis? That's what they originally said I had, but they've changed their minds about it being that now, because it's gone on for nearly 2.5 years without any compensation/improvement at all.

I had VRT (vestibular rehabilitation therapy, which is where they give you exercises to try and 're-train' your balance) and it hasn't made me any better at all...



Whew! Long reply! Thank you all so much for your support and kind words. It really does mean so much to me, especially to have people who believe me after all the skepticism I meet in real-life! :hug:

Kelly, I LOVE that picture of the froggy! It cheered me up, thank you!

 

[DeniseJP]

Hi Jen:

Yes - I get the labyrinthitis a couple times of a year and it is like the "bedspins" when I had tooo much to drink back in my younger years. The prescription medication does take care of it but it takes a week to work.

Your condition sounds different... hope they get you in to resolve whatever it is.

How are Dotty and friends? Having her around must be good - she does not sound like she will let you lie around. Maybe she knows something the doctors don't?

Denise

 

[mouse_chalk]

DeniseJP wrote:

Hi Jen:

Yes - I get the labyrinthitis a couple times of a year and it is like the "bedspins" when I had tooo much to drink back in my younger years. The prescription medication does take care of it but it takes a week to work.

Your condition sounds different... hope they get you in to resolve whatever it is.

How are Dotty and friends? Having her around must be good - she does not sound like she will let you lie around. Maybe she knows something the doctors don't?

Denise

Oh that must really suck! The majority of people I know who have had Labyrinthitis (those few who know what it is and don't think it's made up lol) have had it for a few horrible weeks, and then recovered and been fine ever since, although I have heard that it can come back in short bursts every now and again when you get stressed/rundown etc...

Dotty and friends are great! The downstairs gang are making lots of mess for me to clean up, but Mouse and Chalk do love to bounce up on the sofa to see me which is really sweet. And Dotty is just a big-nosed-bunny who wants constant cuddles LOL!