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My ENT Appt Today


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Old 03-11-2008, 02:36 PM   #1
dizzyandsad
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Exclamation My ENT Appt Today

Ok all I had my appt today.....They said to be there 20-30 mins early as they refuse to see you if you are late....we sat in the waiting room for 2 HOURS. My appt was at 9:40 i didnt get in till 20 past 11. Well what I really wanted was a sympathetic ENT that would run vestibular tests say it was nothing more than VN and tell me to increase my VRT's and since i was told I have fluid in my ears and maybe he would drain that and I would feel a little better.....what i got was a lecture on my tongue ring.....poor bedside manner....told i have NO fluid in my ears and it is not inner ear.....he said I have some Menieres symptoms and if I cut out all of my salt that should help and what he thinks my real issue is is migraines. So MAV which I really didnt want to have. I am extremely med sensitive and scared to try ANY meds and now the only way I will get better is meds. So all in all not a great day! now my PCP has the nice challenge of finding me a migraine med without an antidepressant and hopefully with low side effects....needless to say I am a little terrified.....

For those of you with MAV I would love any and all info you know.....is it forever? Will I be on meds for the rest of my life? What can I expect....?

 
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Old 03-11-2008, 03:04 PM   #2
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Re: My ENT Appt Today

Before getting worked up about the meds, please try the heal your headache diet, if that doesnt work then consider the meds, what have you to lose . . . . all these horrid symptoms you have now of course!!!!

Jayne
x

 
Old 03-11-2008, 04:02 PM   #3
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Re: My ENT Appt Today

Well the scoop is without tests you can't know for sure. Mav is a diagnosis of exclusion...

That said, I would do what Jayne said to do. Get the book heal your headache...read it. Follow it strictly. Then I would try noritriptyline. I posted my questions to my doc regarding mav on this site... feel free to read it.

I am SOOO much better since being on meds. Running, planning more fun...much more active. My doctor said it is not forever....so keep that chin up.

 
Old 03-11-2008, 05:41 PM   #4
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Re: My ENT Appt Today

D&S,

First, I'm surprised you found an ENT who was able to pin down vestibular migraine! I didn't think any of them even knew what it was. Maybe there are a few out there who do their homework afterall.

Second, try to be happy that you have a diagnosis - now you can move on and kill this thing. Which antidepressant were you on that made you feel so bad exactly? Don't forget that they all have different effects on different people. Just because one AD made you feel bad doesn't mean another one will as well. And you probably don't need one anyway. There's tons of migraine meds out there to try.

I totally agree with what Sheriff and Charlotte have said. Get your diet under control first. I wouldn't be surprised if by simply eliminating coffee that you don't begin to feel infinitely better. Your nervous system will calm down and a major migraine trigger will be removed. Start the diet asap.

Good luck ... Scott

 
Old 03-11-2008, 06:45 PM   #5
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Re: My ENT Appt Today

I was on a ton of antidepresssants as a teen i never had any issues or side effects from ANY meds. then i had my second child an since then even cold medicines make my heart palpitate and stuff. after my son i went on paxil or effexor i cant remember but it was one i was one a few years before and was fine. Well the first night i took it i woke up from a sleep completely disoriented shaking and feeling like white hot heat searing through me i didnt take it again. At the start of this the doc put me on lexapro and i got the same wierd feeling adn the hot searing stuff i deduced it was the antidepressant in there making me ill. i wont take them. I am sooooo freaking out right now that i will have to try a new med ANY med, i have developed this enormous fear that i cant shake......my husband is going to have to miss days of work to be here when i start whatever they find for me and if i have a bad reaction what do i do...ride it out? go to the ER? This is why i hoped beyond hope it wasnt MAV.

 
Old 03-12-2008, 06:49 AM   #6
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Re: My ENT Appt Today

D&S...it is what it is. None of us want vestibular vn/labs or migraine. That said, my doctor and dr. Rauch...the top docs start you out on a migraine diet. If you really do believe it is migraine, and you really want to get better...do the diet...religiously and without exception.

Get the book "heal your headache".

It is ok to be anxious..upset. But you either move ahead and help yourself...or stay where you are.

 
Old 03-12-2008, 04:32 PM   #7
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Re: My ENT Appt Today

I am doing my best and cant afford to buy the book right now. today i started the less sodium and cut out caffiene chocolatee cheese etc....i had some caffiene as i took a half dose of excedrin migraine cause i cant shake this migraine......my biggest concern right now is trying to get my anxiety under control it usually is but for some reason it is completely out of control the past two weeks......i emailed you let me know if you get it ok?? and i know smoking is bad and all but there is no way i am going to quit right now like i said it is the only thing keeping me sane i havent had a drink since this started and now i am giving up chocolate caffiene and all the food i love so unfortunatly that is the only crutch i have left. I want to deal with anxiety med free but i seem unable to do that. i am going to see my PCP tomrrow and maybe come up with a plan to tackle that thing......now that they dont belive i have an inner ear thing i guess i can take a med all the time?? the only reason i didnt take the valium as prescribed twice a day was cause i was told it dulled the vest system and messed with compensation but i need to get rid of headaches not compensate right?? i dont know just really need to chat with someone that has this since the dr's dont comfort me at all

 
Old 03-12-2008, 05:30 PM   #8
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Re: My ENT Appt Today

Dizzy...I did get your e-mail and will get in touch. The ent did no vestibular tests. What this means is he is guessing you have migraine. My doctor did the tests..it showed no vestibular issues so he diagnosed migraine since it is a diagnosis of exclusion. Since your ears have not been tested it could be vn/labs or migraine or migraine that is halting your compensation from labs/vn.

Smoking wont hurt anything concerning the vestibular or migraine. So let that go...you can't do everything at once. Second I will get you a copy of the diet that my doctor got me on...then you will know what to avoid.

Last, I think you are smart to get anxiety in order. I know how hard this is, esp. with kids. That said, consider a yoga tape...or could you do some exercise that would help you chill out? I jog when my spouse is home...or when my daughter is napping. I also take the baby out in a stroller and jog with her too. I am not 100%...but I am improving.

Also keep in mind noritriptyline has very low side effects for most. The last two ssri's you have taken have much more chance of side effects. Do not count it out before you try it.

Peace.

 
Old 03-12-2008, 05:39 PM   #9
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Re: My ENT Appt Today

D&S,

>>> i had some caffiene as i took a half dose of excedrin migraine cause i cant shake this migraine

Throw this stuff away. You must ELIMINATE all caffeine - all of it. You may have to cope with some fallout headache for a day or two but you have to understand that caffeine does two things:

1) It will cause you to feel much more anxious and promote your panic attacks.

2) It's a strong migraine trigger even though it *seems* like it helps them initially. Caffeine is to migraine like smoking is to cardiovascular disease - they are the first two things that have to go.

Obviously you need to throw cigarettes away as well but wait until you're ready. As you said, the likelihood of failure is high if you try to stop everything at once. One thing at a time. For headache relief, stick to ibuprofen. Apparently it does not cause rebound headache like so many pain killers do. That's what I use and it works well.

S

Last edited by studyin; 03-12-2008 at 05:40 PM.

 
Old 03-12-2008, 10:13 PM   #10
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Re: My ENT Appt Today

If there is one thing I have learnt, you need to take responsibility for your own health with this condition. The migraine diet is definitely important and is something you can do without any assistance. Giving up caffeine is also a small price to pay.

If you can afford to buy cigarettes, but can't afford to buy Heal Your Headache - an $11 book - you might need to prioritise things a little

 
Old 03-13-2008, 05:38 AM   #11
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Re: My ENT Appt Today

D&S,

A recent interview with the author of "Heal your Headache":

Over-the-counter drugs that lead to rebound headache also include those containing caffeine (Excedrin and others). But plain acetaminophen or aspirin (without caffeine) and anti-inflammatories (ibuprofen and naproxen) do not cause rebound.

Don't make the mistake of falling into the trap of rebound headache, which can result from drugs such as the Maxalt and Immitrex. If you use drugs of this sort more than two days per month, you're liable to get into a vicious cycle of ever-increasing headaches and drug use. This rebound effect also occurs with over the counter drugs that contain caffeine such as Excedrin as well as sinus medications with decongestants and a long list of other prescription drugs, inluding Fioricet and Midrin.

 
Old 03-13-2008, 05:56 AM   #12
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Re: My ENT Appt Today

Thanks scotsman I will def pick up some ibuprofen cause reg tylenol doesnt even touch a migraine if i take it.

 
Old 03-13-2008, 06:09 AM   #13
charlotte67
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Re: My ENT Appt Today

Dizzy...I've got to be direct here...No one wants to be ill, including you. That said, your wellness is in your hands.

I didn't want to give up coffee, chocolate...cheddar cheese, pizza on occasion. I hate working out...but have started doing it. Why? Because I have talked to many and know that all of these things should make me better.

Secondly valium, smoking, drinking for now you should try to exclude. If you can't do smoking right away...taper over time. Actually Maine Medical Center in Portland offers 2 months free of the smoking cessation drug Chantix...you could try that.

This said, you either do it all the way...or don't. Does it suck? Yes. However, I did it because I love my family and love life...and I would rather feel well and not eat certain things...then to eat those things and feel so crappy I can barely deal with my child.

What Adam said is honest. Cigs cost 5$ at least...and the book costs 10-12 bucks on Amazon. If you really think you have headache...this book is a MUST. I don't have time to really read right now...very busy. That said, I bought the book and read it and keep it as a guide. It is really a Godsend.

Finally, we live off one salary too...and live on a small budget. I gave up my favorite drink (decaf ice tea) for a month so we could afford the book. We have a monthly cash budget. So it can be done. If I need to save for something I try to cut back elsewhere.

No one can do it for you, you need to do it yourself.

Chin up.

 
Old 03-13-2008, 06:41 AM   #14
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Re: My ENT Appt Today

Hey charlotte:

Great advice and great attitude..... Half the battle...None of us want this but we need to do what we need to do...

How are you feeling on the Meds... I am like 85% to as high as 95% on certain days....

I am going up on Zoloft one more time to 100 Mg's this week so hopefull that kills the rest

My support group is once a month with MAV patients. Second Support group is next week. Very informative and a lot patients that are a lot worst and severe. There is a lot of research being done. They are close to a test for Migraines.. A lot of the research to get a med is what Adam has stated that they feel this is genetic. What my doctor explained we are born with Over Active or Hypersensitive Trygenial Nerve. This is connected to the Vestivbular Nerve thus our symptoms. It can also cause seratonin problems thus why a lot of us are treated with SSRI's and have a secondary anxiety and depression condition. Very interesting. He is a Migrainer as is every doctor on his staff. His 2 young children get Migraines

He reccomended Biofeedback and it has helped with my anxiety and help me develop a more realistic positive attitude. What he says is a lot of young children have migraines and they dont want to do drug trials on 8 year olds so they work with Biofeedback and Accupuncture...
a lot of meditation or Lamaze based.

I asked him about the food triggers and he said everyone is different... I cut everything out for the most part. I like coffee and asked him. He said 16 0z of coffe a day or less should be ok. Have half decafe. But just like some meds work for some and some do not. It is trial.. If you like your tea and coffe try at a minimal basis.

He is doing the first news report on MAV on CBS NY to try to create awareness.

Very proactive doctor

Continue good luck.....

Howie

 
Old 03-13-2008, 07:43 AM   #15
dizzyandsad
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Re: My ENT Appt Today

thank you all for your advice i do appreciate it. that said alot of you sound like i am resisting this. I didnt know the book was only 11$ and I will try to get my hands on it. as far as the diet this is my second day on it. the only caffiene i had yesterday was in the excedrin because i thought my head was going to burst but now i know to try ibuprofen so iwill need to buy some of that too. as far as the meds i HATE to take ANYTHING but i am trying to composite a list of ones you have tried and research them and find one i might wanna try. so i DO want to get better noone would WANT to stay this way. I am simply scared of being horribly sick from a med while i am alone with my children. so yes i am a little hesitant but looking into it. My biggest issue right now is my anxiety and i am getting a dr appt today to see my PCP and talk about that.I am also cutting out my sodium as the ENT thinks i have some Menieres symptoms. So within the past three days I have had HIGH anxiety, vomiting, headaches, upset stomache, inability to sleep, and bad dizziness, found out i have migraines (even though i hear form some of you there is no way to be sur eof this), stopped any caffiene, salt, pizza, MSG, cheese, fast food and chocolate....so for me pretty much everything i used to eat. So I am hungry tired nauseous dizzy and terrified. i appreciate everything but right now i cant and wont quit smoking i know that makes me seem like a horrible pathetic person who doesnt want to get better but have any of you ever smoked? does anyone understadn my point?but like i said i do appreciate all the advice

 
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