I found out what's wrong with me!

[SnowyShiloh]

You must be on your way to the appointment now!

 

[Luvr of Wabbits and Polar Bears]

Jen you back yet.... I hope everything went well.

 

[mouse_chalk]

I'm back!!!

I can't believe it. I actually cried with relief when I left. I found a doctor who believed me, listened to me, took me seriously, and thinks he can help me!!!

He diagnosed me with Migraine Associated Vertigo.

It's complicated and I may not explain it particularly great, but basically, the blood vessels in my head constrict/swell due to my brain being irritated by something. He said it can be a combination of internal factors (which can't be controlled) and external factors, so things like stress, lack of sleep, illness like a cold, etc, and sometimes trigger foods. The 'classic' migraine where the head hurts, throbs, etc is caused when all or most of the blood vessels constrict. But, it can happen where only particular blood vessels, such as those that supply the balance mechanism, hearing, and vision can be affected, thus you have a migraine without the regular headache (I've never had headaches with the dizziness). If you have an initial 'attack', and then before you recover fully have another attack it makes things worse as you're unable to recover, and the attacks become more frequent, until you can end up where I am now where only a couple of good days occur for every 5-6 bad days. He described it like falling over and having someone keep pushing you back down before you had almost stood up.

So, the treatment is that I have to cut out all 'trigger foods' from my diet for the time being. These are cheese and all dairy including yoghurt, cream, etc (I can have a small amount of milk but not much), all caffiene, all citrus fruits and juices including banana and pineapple, anything with MSG, red wine, and chocolate. Also to avoid too much yeast and eggs. I also have some vestibular rehabilitation exercises to do daily (things like moving my head left to right and back again, etc). I go back in September, where he will probably put me onto medication that I'll take every day, dizzy or not. I'm also to avoid stress where possible, avoid over-exertion and too much exercise (although try to do some), and get regular sleep.

He said I'm likely to get worse before I get better and it won't be an overnight cure, but that some months down the line, I should start to see improvement. On a study he did, 70% of his patients were better within 9 months of seeing him. Also, on average, it took people 44 months (!!!) to reach him, having seen about 4 other consultants and numerous trips to their GP prior to that. He said it's all too common that people have been told there's nothing wrong with them, feel like nobody believes them or understands, and feel desperate because they have lost their independance and their life is on hold. Um, hello? That's me!!

I could have cried right then and there. I cannot believe after all this time I've found a doctor who listened to me and understood what I'm going through! Almost as if he suffers from it himself. I guess that it might not work, but I'm more than willing to give it a go. I would have strongly considered handing over a limb if he'd told me that would cure me lol!


So that's it.... That's my diagnosis Now I need to go and buy some decaf teabags lol...

 

[slavetoabunny]

Wow! That sounds like quite a lifestyle change, but if it works it will be very much worth it. I'm glad you can see a little light at the end of the tunnel now. Keep up updated on how it is working for you.

 

[mouse_chalk]

slavetoabunny wrote:

Wow! That sounds like quite a lifestyle change, but if it works it will be very much worth it. I'm glad you can see a little light at the end of the tunnel now. Keep up updated on how it is working for you.

I know! Funnily enough, I was thinking about it earlier, and the hardest thing will be not using lemons and limes. I use them in cooking ALL the time, without even thinking about it. I do love cheese but I can live without it, and I haven't had much cream or anything recently because it tends to make me feel greasy and heavy. Plain yoghurt will be a challenge because I have it for breakfast. I haven't eaten chocolate for at least 6 weeks so that wont be a problem. I do drink tea but I can have decaf tea as long as not more than a couple of cups a week or so. I will miss the odd glass of red wine! :shock: And when I cook at home I cook from scratch so I don't tend to use things with MSG in, I'll just have to avoid takeaways.

I totally agree it'll be worth it to get better, if it helps! And hey, it might help me lose a ton of weight just in time for the wedding too lol

 

[mouse_chalk]

Pipp wrote:

I know I've posted this before, but I spent two years sidelined by vertigo as well, probably a combination of BPPV (Benign Paroxysmal Positional Vertigo) and Menaire's or something like it. (The vertigo wouldn't go away after 30 seconds or so like most cases, the room would NOT stop spinning wildly for hours to the point where I'd need an ambulance, so I was deemed 'unusual').

A doctor who did the Epley maneuver at the emergency ward probably provided the greatest help.

The specialist I saw was almost useless -- took her a year to diagnose it -- although at least she didn't make it worse, like one doctor did. (And her Epley helped I think as well). But she was sooo rude and arrogant, she almost immediately accused me of being a hypochondriac when she heard I'd been hospitalized for it, and sniffed that I couldn't have had long-lasting attacks -- and this was before she gave me the simple position test that easily proved it.

A low sodium diet and drinking a ton of water would help, too. And not scratching my ears. (I triggered a whole new period of episodes by doing that once or twice -- I had developed a little eczema, they were very itchy!)

Very curious to see what the specialist says. And sorry for not commenting more often on this, I've always meant to! A sister in (medical) arms!


sas :bunnydance:

Thanks for posting, sas! How did you get over your BPPV in the end? Did you get vestibular rehabilitation exercises as well, or was it just the Epley manouvre? I've read about that, although I think that BPPV was ruled out in my case because the vertigo wasn't induced by any one movement- it comes on as and when it chooses too. I used to live with a girl who suffered with chronic vertigo since she was 14- I remember carrying her into the doctors on more than one occasion, and 11 years down the line she has finally been diagnosed with Meniere's disease.

Almost everyone I've ever spoken to with a balance disorder has said the same thing about doctors- it seems that if your symptoms don't fit some little checklist that they have, they just give up and say there's nothing wrong. It feels like doctors don't want to make themselves look bad by admitting that they can't diagnose the problem so they make the patient look bad instead. The doctor I saw today didn't say anything about the previou doctors I'd seen, but he did shake his head when I told him what they'd said...

Makes me so angry that they can just leave people that way with no help! :grumpy:

 

[slavetoabunny]

Jen:

Just curious...do you think your experience with this doctor has anything to do with the difference between public vs. private healthcare? The reason I'm asking is that our current administration is pushing very hard for a public healthcare system. I am so against it!! If you have private insurance, they are now proposing to tax the value of your employer contribution.

 

[degrassi]

I'm so glad you found a doctor that will listen and work with you to get better. That makes all the difference. I hope the plan works and you start feeling better.

Changing your diet isn't too hard. I started a dairy/egg free diet in jan and its been going pretty good. Dairy is in EVERYTHING and goes by dozens of names on labels. Google it to get a list of what to look for. I still miss cheese every day.

If you can handle soy then there are TONS of great soy products out there(sour cream, yogurt,cheeses,milk). I unfortunately can't have soy cheeses as they use Casein(cow milk protein)but unless you are specifically trying not to eat casein then you dont' have to worry about it.

I"m so happy for you. PLease keep us updated on how you do

 

[kherrmann3]

mouse_chalk wrote:

So, the treatment is that I have to cut out all 'trigger foods' from my diet for the time being. These are cheese and all dairy including yoghurt, cream, etc (I can have a small amount of milk but not much), all caffiene, all citrus fruits and juices including banana and pineapple, anything with MSG, red wine, and chocolate. Also to avoid too much yeast and eggs.

Sooo, you're basically going to be on the same diet as the rabbits?

I'm glad that they may have found a reason for your dizzy spells! Sometimes, just a diagnosis makes you feel better (and less crazy). Hooray! Glad that they think they can help! :hug:

 

[CorkysMom]

Sounds like a very positive visit...it makes a huge difference when they don't look at you like you are nuts! Can't wait to see if this helps you!

 

[SnowyShiloh]

Jen, I'm so glad you didn't walk away disappointed again! That's great that he actually has a diagnosis. I really hope you adjust to the new diet okay and that it works out for you... Shall I start keeping my eyes peeled for recipes?

 

[mouse_chalk]

SnowyShiloh wrote:

Jen, I'm so glad you didn't walk away disappointed again! That's great that he actually has a diagnosis. I really hope you adjust to the new diet okay and that it works out for you... Shall I start keeping my eyes peeled for recipes?

Yes... please! I'm struggling already not being able to use lemons! :expressionless And limes... I'll find them hardest to avoid, because they're in so much that we don't realise. Dairy is pretty easy to recognise, as well as the ther things, because it's always obvious when you're about to eat a chocolate bar, or some cheese, lol. But I just use lemon juice without even realising half the time, it goes in everything!


Thanks everyone so much for all your support. I am just so relieved that I've found a doctor who listens and understands. I really had given up hope that one existed! Sounds like he spends a lot of his time clearing up the mess that other doctors leave behind


It's a bit tough right now because I came down with what I thought was a cold at the weekend, and now I have a swollen neck, raised glands, and a super-sore throat, plus my ears and head feels all stuffed up and I'm a bit hot/shivery (in this heat!). I would usually dose myself up on Lemsip and Vitamin C like orange juice but that's out... lol :expressionless

 

[hartleybun]

:jumpforjoy: am so pleased that you finally got the help you deserve. can sympathise with you on the diet change. my son had eczema as a child and when we finally got the help he needed :rollseyesit involved a similar diet change. although he was never a big chocolate fan he was allowed carob as a substitute. rather tasty imho. one thing i did learn was to read the labels as some banned foods go by other names:rollseyes thank goodness for the internet

i wish you well:biggrin2:

 

[pumpkinandwhiskersmom]

I'm so glad that you've found a doctor that you have confidence in, and that is willing to really listen to you. That's becoming more and more rare! So sorry that you've come down with a summer bug, though...they're the worst.

Take care, and will be sending prayers and good thoughts your way, especially in regards to the lifestyle changes. When my DH got sick last year, and had to make some significant changes, it was challenging at first, but much of it has become routine now.

 

[degrassi]

Dairy is pretty easy to recognise, as well as the ther things, because it's always obvious when you're about to eat a chocolate bar, or some cheese, lol.

Thats not always true. Dairy products are in pretty much everything that is prepared/manufactured. Read the labels, dairy goes under a dozen different names. Names that aren't always recognizable as milk(they aren't always listed as milk, or lactose). Everything from bread, to crackers, to pretty much anything that comes in a box can contain milk.

So, the treatment is that I have to cut out all 'trigger foods' from my diet for the time being. These are cheese and all dairy including yoghurt, cream, etc (I can have a small amount of milk but not much), all caffiene, all citrus fruits and juices including banana and pineapple, anything with MSG, red wine, and chocolate. Also to avoid too much yeast and eggs.

How do you know all those are triggers? Did you get a allergy test(blood allergy, skin ones aren't always great). OR are those just common migraine triggers? Never heard of lemons being a migraine trigger though.

Why did he they tell you you can have small amounts of dairy? usually any amount of a trigger food(even small amounts in the ingredients can cause a immune system response) can cause problems and its best to cut everything out 100% at the start, then once you've been on the diet for a few weeks/months you start adding things back and testing which cause problems. If you are still eating small amounts, your body can still be reacting to them and the food elimination would be pointless. Also be aware that after eating a trigger food it can take up to 4 days for symptoms to appear(thats why even for babies you wait 4 days inbetween introducing new foods).

If you are looking for certain kinds of recipes let me know. Over the past few months I've been collecting dairy/egg free recipes.

 

[mouse_chalk]

degrassi wrote:

So, the treatment is that I have to cut out all 'trigger foods' from my diet for the time being. These are cheese and all dairy including yoghurt, cream, etc (I can have a small amount of milk but not much), all caffiene, all citrus fruits and juices including banana and pineapple, anything with MSG, red wine, and chocolate. Also to avoid too much yeast and eggs.

How do you know all those are triggers? Did you get a allergy test(blood allergy, skin ones aren't always great). OR are those just common migraine triggers? Never heard of lemons being a migraine trigger though.

Why did he they tell you you can have small amounts of dairy? usually any amount of a trigger food(even small amounts in the ingredients can cause a immune system response) can cause problems and its best to cut everything out 100% at the start, then once you've been on the diet for a few weeks/months you start adding things back and testing which cause problems. If you are still eating small amounts, your body can still be reacting to them and the food elimination would be pointless. Also be aware that after eating a trigger food it can take up to 4 days for symptoms to appear(thats why even for babies you wait 4 days inbetween introducing new foods).

If you are looking for certain kinds of recipes let me know. Over the past few months I've been collecting dairy/egg free recipes.

I'm not really sure to be honest. But I did say that I don't normally have much milk unless it's in a cup of tea, which then isn't much, so possibly that's why, or maybe it has something to do with that it's only certain dairy products thought to be 'trigger foods', I really don't know! I would use milk occasionally for sauces, like cheese sauce etc, but obviously that's out now anyway. Wikipedia on MAV says that 'fermented dairy' products are 'trigger foods' but I haven't read further into that yet...

I've not had any allergy tests, those are just what are normally considered to be trigger foods- I'm not sure if they apply to 'regular' migraines or vertigo related migraines or not though, but I've spoken to a couple of other people on a forum I belong to with MAV and they have been on the same diet. He did say that it's possible that none of those foods affect me, but while I'm recovering and trying to get my balance back to normal it's best to eliminate anything that may possibly hinder that.

Any dairy-free recipes would be great! I bought some soya yoghurt yesterday but haven't tried it yet. Maybe I'll just live on curries and stir-fries lol

 

[SnowyShiloh]

How does the soy yogurt taste? I was vegan for a couple years a decade ago and tried soy yogurt once. I can't describe how terrible it was. I've heard soy yogurt has gotten a lot better though. How is your new diet going so far? At least you can still eat chili! Is vinegar allowed? Vinegar could at least make a substitute for lime or lemon juice, depending on what you're cooking...

 

[degrassi]

SnowyShiloh wrote:

How does the soy yogurt taste? I was vegan for a couple years a decade ago and tried soy yogurt once. I can't describe how terrible it was. I've heard soy yogurt has gotten a lot better though. How is your new diet going so far? At least you can still eat chili! Is vinegar allowed? Vinegar could at least make a substitute for lime or lemon juice, depending on what you're cooking...

Soy products have come a LONG away compared to what they were a few years ago. Most taste pretty good, not the same as the real thing but a good enough substitute.

Be aware that soy cheese(block cheeses like cheddar and mozza) still contain milk products, not sure about other soy cheese products like sour cream, yogurt or cream cheese. Best to read the label of those.

I also found a yogurt product made out of coconut milk and no dairy. Not sure how widely available it is tho. http://www.purelydecadent.com/products/coconut_yogurt.html

 

[BethM]

Oh Jen! I'm so glad you were finally able to talk to a doctor who listened, and best of all, could tell you what's going on!!!!

The restricted diet will be difficult, but it should get easier as you go along. Especially if you're feeling better!

I agree with the advice others have given about starting by cutting out all the trigger foods, and letting your body adjust to that. After some time, you should be able to gradually add things back, one at a time, to see how you react to them individually. You probably won't need to avoid all of those things forever.

 

[Numbat]

Super that you found out what the problem was! :thumbup

Good luck with the new diet!