Posted , 7 users are following.
Hi all, I was wondering how long it took for you to enter into remission after all of the horrific vertigo attacks? I really want to return to university but as it stands I can’t do anything. I was wondering if I could just wait until remission to do so? Thanks in advance
0 likes, 31 replies
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clifford64549 christina91807
Posted
Hi Christina,
Oh my word, I feel for you. I went through 6 months and it seems to be different for most folks. The anxiety it causes also does not help. The good news is that you seem to be in capable hands; remember the betahistine takes a month to really kick in and the steroid jab in the ear also tends to give favorable results. Whilst it is so difficult to diagnose, has your doctor given you any advice on the cause - viral, allergy, knock on the head previously, change in season (sinus) etc. Are you seeing the audiologist for change in your hearing patterns?
You will get over it, do not let your mind tell you anything else! At this stage stay away from from the "kickers" - salt, caffeine, chocolates, smoking etc. - but you will find these for yourself. Do a little research on the things that can help like the APLEY maneuver, get a family member to practice it for vertigo. Do the little exercises that help the nervous system around your head.
It is going to go away, I wish you the best, it is so difficult and we all go through what you are at the moment - you are not alone.
x
christina91807 clifford64549
Posted
NeddyO christina91807
Posted
I have looked through the various exchanges you have had. I gather you may be on betahistine. This will take a month to become effective and you will probably need a significantly higher dose than the standard dose you are taking! Your ENT/auralphysiology consultant will hopefully be up to date in this area.
Nobody knows how long remission will last. For some recurrences are quite frequent whilst the luckiest only ever have one attack! The important thing is to to become free of the nausea and vertigo attacks (some degree of tinnitus and lower frequency hearing loss may be permanent) so that you can resume as normal a life as possible. Once under control I was advised to wean off betahistine slowly once 5 to 6 months had elapsed with no relapse. If symptoms start to come back don't wait for a full blown attack - go straight back to previous highest dose of betahistine and if necessary go to a higher dose to regain control. This approach has served me well such that I can lead a pretty normal life.
There is hope - 70% of patients recover. So get the best advice available (including MRI scan) to be sure of the diagnosis.
christina91807 NeddyO
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NeddyO christina91807
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Nothing is certain in this life so the best thing to say is once under control get back to normal but remain alert to the possibility of a recurrence and act quickly to pr-empt it. To that end I always have Stemetil and Buccastem tablets with me in case I get caught out, and have a stock of betahistine so that I can resume treatment without first needing a GP appointment.
I had 21 months free of symptoms after the initial onset, then felt problems returning (ear fullness, increased tinnitus and some dizziness) so went straight back on betahistine which I finally stopped at the end of August so my current remission has lasted 14 months.
If the medical profession give you the tools it is up to you to manage the problem. You will feel a lot better if you feel in control.
Stay positive and get back to UNI !!
paul01145 christina91807
Posted
Migraine has nothing to do with md I've had md for 43years and never suffered with migrane I think people are just putting 2and 2together and coming up with 6 md is is what it is
christina91807 paul01145
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paul01145 christina91807
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Hiya Christina I was in remission for 15 years but it came back worse than ever and now I don't even leave the house they did tell me with getting it at such a young age this would happen but you think it will never happen to you but I have it in both ears and have a really good family behind me so I'm lucky x
christina91807 paul01145
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paul01145 christina91807
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I got it wen I was 8 years old I've tried to lead a normal life as possible but now I have bad attack every day and I have had them when I was out bymyself so now I have lost my confidence and feel really vulnerable also my hearing as almost gone altogether so most days when I'm bad I'm in bed x
JMJ paul01145
Posted
Dear Paul,
You poor guy. I’ve suffered with MD for nearly 4 years...I can’t imagine what it must be like to deal with it for 43 years!! You must be very strong. Was there much in the way of treatment available to you 43 years ago?
In terms of Migraine and Meniere’s: Researchers are finding that Migraine occupies quite a wide spectrum (classic head pain with nausea and light sensitivity, but also visual distortions, dizziness, imbalance, etc...) and many have shown and/or theorized during the last 10 - 15 years, that Migraine and Meniere’s Disease are indeed related. In fact, certain types of Migraine —Vestibular Migraine for example, can be difficult to distinguish diagnostically, from Meniere’s. And, they can exist along side Meniere’s.
This is all relatively new information that was certainly not available 43 years ago. In fact, I don’t think it was being talked about even 20 years ago.
It has been known for quite a number of years that a significant population of Meniere’s sufferer’s have had classic Migraines headaches at some point in their lives (especially the people in whom Migraine manifests at a young age.). But now, as the definition of Migraine expands, researchers are beginning to look more closely at a relationship between the two diseases.
If you do a search using the words - relationship between Meniere’s Disease and Migraine - you’ll come up with a quite a few articles from reputable organizations and researchers.
I don’t think there’s any question that Meniere’s Disease is its own entity at his point. But, there are so many syndromes that appear to be so similar but with subtle differences, including resistance to classic, Meniere’s treatments. Thankfully, as time goes on, so does the research, and people with Migraine symptoms similar to MD are now getting properly diagnosed and getting treatment that relieves their symptoms.
Wishing you all the best.
J-
paul01145 JMJ
Posted
No there was not a lot of medicine available at first the doctor told my dad I was a liar and to give me a clip round the ear but he got sick of having my friends coming to tell him I was laying in the street been sick and not being able to stand up lol I think you just learn to live with it the best you can especially wen I got it so young I am now nearly totally deaf learning sign language and not allowed to drive anymore but with me having attacks every day that doesn't bother me the only thing I would say is that now I don't go anywhere I feel very lonely and depressed but I suppose I'm a lot better off than some people now I'm just waiting to see what operation are available to me thanks for your reply and good luck in the future
JMJ paul01145
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My God. What you went through is barbaric. I’m so sorry you suffered so, with no help. And to not be believed!! Arrrrgh!!! That’s the worst!!
Hopefully you have or will, find a good health care provider who will give you some relief after all these years.
I understand why you would be lonely and depressed. I hope you find some comraderie here, where everyone really does understand what it’s like to live with this.
Take good care,
J-
paul01145 JMJ
Posted