Describe an attack

Thanks for the reply. I would assume though you have to be diagnosed though for any meds to be changed? I'm on 16mgs of the beta histine and a fella on another post said that he was on 64mgs x3 a day

Getting diagnosed takes a while.  I was diagnosed in France where I used to live.  Here in the UK when I saw the specialist (not the consultant but one of his registrars - a different one each time of course!) the first one put me on Betahistine (despite me saying I'd tried it in France and it hadn't worked) and told me to come back in three months! Well, they would have been the worst three months of my life as it didn't work one bit but I got my GP to prescribe me a different med - the Cinnarizine and that really saved my life.  Doctors are so fond of trying what they think is best and not listening to the patient.  The next registrar I saw was really cross when I refused to stay on the betahistine!  It was quite funny.  Stand your ground and demand to be treated and if the meds don't work ask for something else.  You can actually buy Cinnarizine over the counter as Stugeron as it is for travel sickness. I got it on prescription though.  

Fil

I have had the ear infusion where they put mes in the inner ear and I'm on steroids now and valum but I'm still having problems.

Hi.

I was also put on the same medication, it contains anti sickness medication and for me, it was a miracle. At one point I honestly thought I'd had a stroke in my sleep, the whole side of my face felt unresponsive and my head was pounding. Took the medication prescribed by my doctor and I've had nothing as severe since. I get the odd time when I feel like I'm leaning to one side.

A change in air pressure, I found would set off my menieres and the thought of theme parks of fairground rides makes me feel queasy.

Are you on valum and dexamethasone?

I was only given cinnerazine (sp). I've had a severe bout of MD since, I was out and about and it just came from nowhere. The doctor called me straight back and arranged for me to pick up a prescription straight away. That was in January, I've been taking one tablet a day as opposed to 2 and I've been fine.

Ravenslave I have never heard of that medicine before

It contains an anti-sickness element as well, so as well as dealt ngvwith the 'spinning', it Alan deals with the nauseous feeling.

I would definitely recommend it for MD

Is it available in the US?

I'm not sure. Ask your gp, it may be available under another name.

Ask for an anti-sickness combination for MD, or, experiment yourself with travel sickness tablets, if you have any.

It's exhausting to spin and feel sick all at the same time and to explain it to someone that hasn't experienced it, can lead to raised eyebrows and blank stares.

I carry my tablets with me wherever I go, I notice that I get rain headaches, sounds strange, a headache that doesn't break into a headache, exhausting all the same, when rain is coming and I would say 60% of the time it's followed by spinning, not always nauseous, again, exhausting because efforts to concentrate are increased.

Maybe have a chat with a pharmacist first, see if you can find a name for the combination before you make a visit to your gp.

Thanks ravenslave. I will check in to it or weather has been so crazy here hot one day cold the next and rainy a lot might be why it's acting crazy. Just talked to my regular doctor and he told me to get some phenylephrine pills and try them it's supposed to be for sinus pressure so we will see

It does do that to you. Until you get stabilized on something you will not feel better but even then I feel tired alot but am still able to push through and get things done. I get mad at it and want to show it who is boss.

Hi Chris,

I actually have partial complex seizures, along with MD.  However, they were diagnosed years ago, and for me, don't cause the same symptoms as MD.  (For these, I take Vimpat and Keppra). Did they see something on an EEG?

I share all of your symptoms:  The ear fullness, the vertigo, the "wooooooow", the panning camera sensation, and  Yes!  The fatigue!  There's nothing quite like the "MD hangover".  Ugh.  It's a deep and exhausting feeling.  It's the vertigo with vomiting however, that defeats me. I just can't take it.  It's debilitating.  And the unpredictability of the epidsodes are the MD hallmark.  I think that's what makes many of us very anxious, over time.

You mentioned the severe head pain.  I don't know much about it, but I have read about (and there was a forum member here at one time who had it) a form of MD called "Meniere's Associated Migraine"?  I think you get all of the "gifts" of MD with the migraines thrown in! Sigh. It would be worth researching. 

I'm so sorry you're having to deal with this. It's so life-disrupting.  But my hope for you is that you can find a combination of meds, or perhaps more advanced treatments that will help you, once a firm diagnosis has been established.  

Welcome to this forum. It's a great place for you to find information and wonderful support.  You'll find lots of people who are in the same boat!  The disease-specific informational pages on the site are really very good as well.

Take good care,

J-

Hi J thanks for your reply. I didn't believe the seizure diagnosis as once I researched it, it didn't fit. I think I was lumped with that as it was weird symptoms i couldn't describe, the pins and needles and the occasionally getting hit with like a wall of fear, which i know now was a panic attack. Never had one before. The EEG I had done showed nothing but according to the neurologist an EEG is a lucky dip as you would have to have some form of seizure activity in the 20 minute test window. Here in the U.K. epilepsy is diagnosed by, if you take epilepsy meds and it goes away then it's epilepsy.

It's reassuring to hear that you have the same symptoms as me but also sucks that you are having the same symptoms. At times it really is soul destroying. I would recommend though if it is kicking off badly to take cyclizine and diazepam. It really does take the edge off for me.

RE: "Here in the U.K. epilepsy is diagnosed by, if you take epilepsy meds and it goes away then it's epilepsy."...Oh no!  LOL!! That was an "ironic LOL"! - You have a way of expressing a sad truth, in very amusing way!! 😂 And a good sense of humor defnitely helps in trying to  survive this insanity!

I had an audiogram yesterday and my tinnitus was so loud, I could barely hear.  So I'm trying to describe it to the audiologist:"There's a huge windstorm, and within that, there's the steam boat repeatedly blowing its horn..." She nodded sympthetically...."....and sometimes lately, I think there's an organ in my ear...".  Her eyes flew wide open and she looked so surprised! So I clarified: "No...I mean an organ like you hear being played.  At a  baseball game...playing chords....like a Hammond!"  And we both had a good laugh!!  You just can't make this stuff up.  But that's nothing compared to trying to explain to an ENT, your MD symptoms, and watching his face!  It all sounds sound sooooo crazy. I think they understand "fullness and vertigo". Period.  It's all of the other stuff that goes along with it...the destortions in perception, and sensations in your head and stomach - it's really hard for them to get.   I don't even talk about it anymore:"Just prescribe my rescue meds and keep the vertigo and vomiting away, and I'll leave you alone!"  I had a good run of freedom, after several months of intratympanic steroid injections.  But then a relapse, so I'm having them again.  I find that you have to fight very hard for what you need (when you least feel like fighting!) but that there are ways that you can feel better.  

Thanks for your great note!

J-

Lol Typical NHS for you and if u don't laugh you cry. It was the epilepsy nurse that told me that interesting factoid and also that she is the only epilepsy nurse for 20k people here in Northern Ireland. The benefit of the dr being 90% sure that I had epilepsy was, the drug he has me on, lamictal, is used for people with manic depression and as a mood stabiliser for people with bi polar. So I refer to them as my happy pills and they have helped greatly with my mood or at times I wouldn't be surprised if I were to headbutt a wall lol

I would quite liked to have saw the audiologists face when you said that. I'm sure it was a picture

Its just very soul destroying for when it goes away and you're like yay I'm feeling great and I'm not cursed anymore and I can do whatever I want again and then your body goes nope, it's troll time and hits u with an attack and then you're saying to yourself FML I'm away to bed lol

One epilepsy nurse per 20 thousand people????  That's as insane a nurse/patient ratio, as I've ever heard!!!  Unreal!  Lamictal work as your happy pills?? You lucky duck! 😁 They caused me to have a sodium deficiency, which rarely occurs.  No happiness whatsoever. Sigh.  But glad that you got yourself a nice bonus! Lol!  

You're right.  Nothing like getting hit after you've been in a good place for a while.  I really think that's why anxiety is a fairly major issue among so many of us. Like hypervigilent birds...always wondering where and when the hawk is going to swoop down again...  Ug.   But, at least we can have a good laugh once in a while.  It really does make it so much more bearable!  

Wishing you a quick road to recovery!

J

Yup lol and she knows more than the speciallists do so guess that tells you everything you need to know. And that sucks you weren't able to take the lamictal, my wee miracle pills

Yeah I was getting to that stage you're describing awhile ago where I wasn't wanting to leave the house in case I had an attack and then one day I just decided sure if it happens it happens. The dice have been rolled so just have to see where they lay. Have to say having a positive mental attitude and of course the happy pills lol

Have you ever had on the MD side feel like something was pulling on your head and that eye get a little blurry and tinder with off balance and sick on the stomach?

No Daniel don't think I have. Is that what you experience? Has anybody else experienced this? What i have had, for example today, is that my head feels kinda heavy on my neck and if i am sitting I would have to put my head back against the head rest but it didn't last very long today and generally doesn't

Yeah I have had it a few times and had it last night sitting in the dark watching TV once I turned the lamp on it got lots better maybe with no light on but the TV had something to do with it idk. But yes the heavy head I have had and got it today but I'm trying to stay up and fight it

Not good. I'll find this link now regarding the visual vertigo and post it as it maybe that. Some of the reading may be helpful for people on here to read

I've posted the links below but it's currently waiting to be moderated so hopefully be good to go soon

Thanks chris

Yes, the stugeron is the same as you buy over the counter but you take two tablets three times a day.  They themselves make you quite tired and sleepy so watch the driving etc.