Posted , 6 users are following.
Hi,
I'm getting daily attacks of MD, where for about 5 mins everything feels upside down, then I feel really dizzy, disorientated and nauseous and fatigued. I normally take Betahistine 16mg 3x daily, Cinnarizine 15mg 3x daily and my GP has just prescribed Prochlorperazine 5mg when required, none of it seems to be helpful. I have requested a cancellation appointment with ENT before my scheduled appointment at the end of January, so I'm hoping to get seen by them quite soon, my question is, is it MD? Does anyone else get this? And what can be done about it? It's really interfering with my life.
0 likes, 12 replies
JMJ terri-ann28375
Posted
Hi,
When I'm in crisis, my rotational vertigo attacks last anywhere from 20 to 45 minutes (but a few have lasted as long as 90 minutes). I typically fall down as soon as they begin, and the vomiting starts soon afterward. I take my rescue meds as soon as possible, and then about an hour later, the "Meniere's hangover" begins, which is also quite disabling: Dizziness, nausea, fatigue, confusion, loss of balance, deafness etc.... That will persist for 24 to 48 hrs, until the next attack of vertigo hits. So, I've had multiple episodes of dizziness in a day, and a sense of "the boat rocking"....but I've never had multiple episodes of actual rotational vertigo in a single day.
I can imagine how sick you must be feeling. Ugh. It's a really horrible disease.
Only a doctor can truly diagnose MD. They will initially do tests to rule out other causes for your symptoms — These tests might include an audiogram, BPPV test, and an MRI. The classic picture of MD includes 2 episodes or more of vertigo, associated fluctuating hearing loss, tinnitus or sense of fullness in the ear, unilateral hearing loss in the low range (though a small percentage of MD patients do have it bilaterally), and absence of any other obvious causes.
It might be a good idea to keep your sodium intake below 1500mg/day for now, and see if it helps at all. If you're diagnosed with MD, you'll probably be prescribed some sort of diuretic.
I failed conservative measures (low sodium diet and oral medications), and am being treated with intratympanic injections of dexamethasone. For me, it's the only thing that has helped.
I can understand how desperate you must feel. But this forum is a good place to go for support, answers, and suggestions. I think that as a group, we've seen it all! There's no symptom too strange!! LOL!!!
Take good care,
J-
terri-ann28375 JMJ
Posted
carol04816 terri-ann28375
Posted
You may have BPPV also like I do. Have you been shown any exercises called the Epley maneuver? Sometimes it will help.
Tunsc1963 terri-ann28375
Posted
Hi Terri, I think JMJ has given you some good advice. I had my last vomiting and dizzy episode about 8 weeks ago. I still have the odd episode but it only lasts seconds. I have stopped having salt altogether I don't have it on my food at all if I cook with it I use low salt, but not much. I use more pepper, have you cut your intake of salt? I do feel there is definitely a connection. You also need to keep yourself hydrated that's important. My symptoms are a lot better now and don't have many attacks since reducing my salt caffeine and alcohol intake. One thing I would look at is the Prochlorperazine your taking I was originally prescribed this and it made me feel worse and caused me to be sick this could be contributing to your symptoms? I've also looked into taking vitamins c and d these are thought to combat the sickness and dizzyness. I was then prescribed bethahistine it seems to be the go to drug to use for MD sufferers but this didn't really help so I decided not to bother and I no longer take any medication since cutting down on my salt caffeine and alcohol. I also don't eat take away food or eat out a lot I make my own food so I know what's in it. I make bulk and freeze a lot which makes life easier.
Good luck xx
NeddyO terri-ann28375
Posted
If you have been positively diagnosed by ENT with Meniere's then you should ask about increasing the Betahistine dosage significantly - I was started on the same dose you are taking but although it helped with tinnitus and hearing loss it did not stop the attacks so the dose was tripled to 48mg tds which did the trick. It will take at least a month to become fully effective. After 6 months free of attacks I was able to wean off the drug and had 21 months with no problems. When the warning signs reappeared I went straight back on the high dose betahistine and had to increase the dose to 64mg tds which has re-established control.
I also found that although initially helpful with the acute symptoms Prochlorperazine 5mg lost its effectiveness - I only use it if an attack threatens. It is a very sedative antipsychotic that makes me very drowsy and lethargic!
Good luck.
Tunsc1963 NeddyO
Posted
NeddyO Tunsc1963
Posted
Good luck.
Tunsc1963 NeddyO
Posted
Thanks I was on 16mg 3 x a day but it didn't help I did discuss this with my Doctors they would not give me a higher dose so I stopped taking them altogether I couldn't see the point. At my last visit to my consutant I mentioned this but he just brushed me off and told me not to bother taking them.
NeddyO Tunsc1963
Posted
terry48784 terri-ann28375
Posted
My ENT in New Zealand told me to start with 16mg betahistine once a day and increase by 16mg per week until my vertigo went away. He said I could go up to 64mg three times per day. I had my last vertigo attack April 2015 when on 32mg x 3 times a day. I decided to carry on and decided to stop at 48mg x 3 times per day. Have had no further attacks and decided Aug 2016 to wean myself off and got down to no betahistine before having a 5 hr dizzy spell which was not as bad a previous vertigo but I was worried it might get worse again. Tinnitus also got worse when i reduced my dosage. Went back to previous dosage of 48mg x 3 times a day which I am on now. I have used both Cinnarizine and Prochloroperazine to treat nausea during an attack. Don't believe they stop an attack but help with nausea(later attacks I had no vomiting) and I ended up using Prochloroperazine(Becastem). You stick it under your top lip and it at least makes you feel like you are doing something while you ride it out tucked up in a ball in bed. I carry some in my wallet in case I have another attack. I notice your GP has prescribed your last treatment but only your ENT can diagnose MD. Low frequency hearing loss, tinnitus, aural fullness(pressure) in one ear along with vertigo are all needed. A good friend of mine has dizzy episodes(eg has to sit down on the floor in the supermarket till it passes) and her ENT has ruled out MD but they are still struggling to find out what is causing her problems.
terri-ann28375 terry48784
Posted
Hi, my ENT diagnosed the MD 10 years ago, but my GP is the one who has been dealing with it. I have since rung the hospital and requested a cancellation appointment with ENT as my scheduled appointment isn't until the end of January. This way I'm hoping he'll see me quicker and we can decide on a plan of action.
I doubt he'll go higher on the Betahistine as he says I'm on the maximum dose I can be, which is one reason my gp prescribed the Cinnarizine and Prochlorperizine. I get all the associated symptoms, which is why I know it's my MD that's the problem. I'm really hoping he doesn't opt for intratympanic gentamicin as I've got a terrible phobia of needles, especially near my ears.
NeddyO terri-ann28375
Posted
Gentamycin injections are falling out of favour and being replaced with steroid injections which have a good success rate.Thankfully I have not needed to go down that route yet.
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