Author Topic: high dosage SERC update. (Read 19425 times)

harry · « **on:** Jan 08 2014, 11:48 AM »

I thought I would give you an update on my high dosage SERC experience.

I am bilateral MD with burnt out right ear and active left ear. I have previous hearing problems prior to MD so my hearing is worse than normal MD.

Have been on SERC for at least 12 years but in march 2012 went onto 192mg per day (4 x 16mg x 3 per day) after a very bad 12 months attacks continued until Sept 2012. since then no bad vertigo attacks ( never gone more than 3 months before) and hearing in left ear has improved by about 20 - 30 db which for me is massive. Right ear remains unaffected.

Have now gone down to 144mg as a maintenance dose. I expect to remain on this for quite some time. My consultant says that this is now considered to be an effective maintenance dose as any lower has no real effect.

Will go back in 6 months for a review. He now considers me as in remission.

My consultant is very surprised at the level of hearing increase.He expected some improvement but not this much. Has anyone else seen a marked improvement in hearing whilst in a remission period?

I have never had a remission period for this long and my hearing has been steadily getting worse over the last few years so this is a welcome surprise.

Regards

Harry

Emma · « **Reply #1 on:** Jan 08 2014, 01:15 PM »

Wow sounds brilliant. I may ask about this next time I see my consultant. So pleased you are having such such a welcome relief x

Elaine · « **Reply #2 on:** Jan 08 2014, 04:34 PM »

Wow that's a massive dose but glad it's helping you Harry
Elaine x

allanander · « **Reply #3 on:** Jan 08 2014, 08:01 PM »

Good to hear you are getting some relief from the dreaded MD.Your consultant seems really switched on. When I asked my about higher doses of Serc he was not even prepared to discuss it. His answer was always lets see what happens.

harry · « **Reply #4 on:** Jan 09 2014, 12:04 PM »

I see an inner ear specialist/consultant physician and not an ENT consultant who is normally a surgeon. He is very knowledgeable about MD and uses high dosage Betahistine on the back of research done in Germany which shows that taking a higher dose can reduce vertigo attacks and sometimes improves the hearing.

Sometimes an ENT consultant knows something about lots of things but does not have the time to read up and keep up with more complicated illnesses that are not so easy to treat.

My previous post was not very good grammar. It took a little while for the increased dosage to have an effect and although I started the increased dosage in march 2012. It was not until September that things started to improve. I remained on 192mg per day until yesterday.I am now on 144mg per day.

As I have said before I don't know if it is the increased SERC, a remission all by itself or the reduced stress of not working anymore ( took early retirement in Nov 2012 although I was VERY stressed in Sept/Oct 2012 whilst waiting for early retirement to be agreed)

It is just that it may be worth other people giving it a go to see if it helps them.( please speak to your consultant first)

Giddy · « **Reply #5 on:** Jan 12 2014, 11:06 AM »

Quote from: harry on Jan 09 2014, 12:04 PM

It is just that it may be worth other people giving it a go to see if it helps them.( please speak to your consultant first)

That is good news you are feeling better Harry.

My Mum is off to the Hospital tomorrow so, we may ask the Consultant if my Mum could have a higher dose of Serc etc....

Don · « **Reply #6 on:** Jan 18 2014, 12:35 AM »

Does anyone know how Serc works? What is its course of action that helps with MD symptoms?

harry · « **Reply #7 on:** Jan 18 2014, 12:10 PM »

I not really sure, but I believe it is to do with increasing the bloodflow in the inner ear.

Elaine · « **Reply #8 on:** Jan 18 2014, 02:01 PM »

Yes it's a vasodilator and stimulates blood flow to the inner ear

Stephen Spring · « **Reply #9 on:** Jan 19 2014, 06:53 AM »

Quote from: Don on Jan 18 2014, 12:35 AM

Does anyone know how Serc works? What is its course of action that helps with MD symptoms?

Betahistine dihydrochloride (serc) is an immune modifier. It works, up to a point in MD because MD is an immune mediated condition. It works on histamine receptors and thus interferes with the inflammatory cascade. Older and less informed studies from the 60-70’s thought it just improves blood flow to the inner ear, but it doesn’t seem to do it effectively in other areas of the body so alternative mechanisms have been sought which explains both effects. Besides, there are other, much more efficient ways of improving blood flow such as heparin and other vasodilators. Heparin was once used as a treatment for MD incidentally. Serc is not approved by the FDA in USA due to its limited efficacy, where it is in many other places where contradictory results show its usefulness.

Elaine · « **Reply #10 on:** Jan 21 2014, 07:28 PM »

Stephen ,
The blood flow theory must be true to some extent as I'm on warfarin and have noticed that my serc does not work effectively when my INR is not in target range .Put it back into target range and it's working much better and the spins are a lot less .My 9 hour spin after my recent saccus decompression op was after an absence of warfarin/heparin and I'd not taken any serc that day either !

Stephen Spring · « **Reply #11 on:** Jan 21 2014, 11:27 PM »

Quote from: Elaine on Jan 21 2014, 07:28 PM

Stephen ,
The blood flow theory must be true to some extent as I'm on warfarin and have noticed that my serc does not work effectively when my INR is not in target range .Put it back into target range and it's working much better and the spins are a lot less .My 9 hour spin after my recent saccus decompression op was after an absence of warfarin/heparin and I'd not taken any serc that day either !

Its true, to some extent. Many people with MD are hypercoagulated. This is as a result of, not the cause of MD. The blood vessels that “feed” the cochlea and surrounding structures are one cell wide and are part of the tiny capillary system. Heparin and other drugs interfere with clotting agents in the blood and thus assist with extravascularization. Blood flow to the inner ear is vital of course, but one should not confuse cause with effect. Hope you remain spin free.

Elaine · « **Reply #12 on:** Jan 22 2014, 06:20 PM »

Quote

This is as a result of, not the cause of MD

My sticky blood is a separate condition but was stated to be the possible cause of my MD by the Lupus docs at St Thomas's in London at one point .As it turns out I have both conditions but the effect of my anticoagulation on the effect of my Serc is quite marked tho by far means perfect .I need my blood thinning but it also needs the serc to send it to the right place too

.I wouldn't say spin free exactly but "less spinny " when my INR is in range

Stephen Spring · « **Reply #13 on:** Jan 24 2014, 02:50 AM »

Quote from: Elaine on Jan 22 2014, 06:20 PM

Quote
This is as a result of, not the cause of MD
My sticky blood is a separate condition but was stated to be the possible cause of my MD by the Lupus docs at St Thomas's in London at one point .As it turns out I have both conditions but the effect of my anticoagulation on the effect of my Serc is quite marked tho by far means perfect .I need my blood thinning but it also needs the serc to send it to the right place too .I wouldn't say spin free exactly but "less spinny " when my INR is in range

Yes, my response was poorly worded; in certain individuals there are other factors, but generally, the complex fibrinogen related cascades are dysregulated in people with MD due to the underlying immune dysregulation. Lupus and other misdirected immune conditions are prevalent in people with MD.

Jane_Jig · « **Reply #14 on:** Jan 27 2014, 01:20 PM »

I'm pretty new to MD.

My audiologist in July 13 suggested my symptoms in early 2013 might be MD and started me on Betahistine - 16mg x 3, then after to month 24 mg x 3 a day.

No effect at the lower dose.

At the higher dosage, I would feel nauseous unless I took them with a good amount of food. AND THEN I STARTED HAVING SPINS! which were entirely a new thing for me. I just took myself off them and the audiologist has give me a diuretic.

I was hoping I was heading for remission, but some recent symptoms are just like those a year ago: sudden tinnitus, headaches.

So, I don't know if the dose I had was high, but Betahistine hasn't worked for me, which suggests either it doesn't work, or what's happening inside my ears isn't relevant to what Betahistine does to the body.

ladar · « **Reply #15 on:** Feb 04 2014, 09:57 PM »

I thought I would give my experience re higher doses of Serc. I saw ENT consultant today and asked about increasing Serc as I've had 5 attacks since Christmas which is unusual for me. I tend to go no longer than three months between vertigo attacks. After trying to persuade me to have a grommet fitted (which I'm not ready to do yet) he agreed to the dose increase.

I am now due to take 2 x 16mg three times a day but he did say build up gradually not all at once. So I'm going to increase on a weekly basis until I'm up to the new full dose. He did say I should only stay on this new dose for three months and when I start reducing back to 1 x 16mg three times daily to do it even more gradually as it could cause spins etc. If it works I will be considering staying on longer than 3 months if possible. A tempting thought!

Due to see him again in 3 months so will give an update before then how things are going. I'm living in hope that things will improve somewhat.

Thanks to everyone for all the helpful info coming through at various times.

Linda

NEWOSA65 · « **Reply #16 on:** Feb 05 2014, 10:11 PM »

Hi Linda,

I have been on 32mg x 3 Serc daily for the passed 8years!!!! No side effects whatsoever, in fact, one of the safest long term med you can have! If it works for you which chances are it will make a difference, then I cannot see why you would need to reduce your dose unless you suffer with asthma. I think some people may be sensitive to them eg some have more headaches than usual due to the histamine and some have mild stomach upsets but most have no side effects at all.

Best wishes,

Simon

I think someone on here takes 12 x 16mg daily???!

ladar · « **Reply #17 on:** Feb 08 2014, 06:36 AM »

Hi Simon

Many thanks for your comments and support. I am going to build up as consultant suggested and see how it goes and continue use with increased dose if it's a success. Am hoping for good things!

Linda

Kayls · « **Reply #18 on:** Mar 09 2014, 02:42 PM »

Hi I am also on a high dosage of serc 6 3x daily, and just wondered if any of you that are also on a high dose get any side effects. I seem to be having real trouble sleeping and have also been getting very warm at night where as in the day I really feel the cold, I seem to have noticed this since starting to take a higher dose of serc a few months ago.
Thanks Kayleigh

harry · « **Reply #19 on:** Mar 10 2014, 11:19 AM »

Hi Kayliegh,

Just to confirm you are on 96mg 3 x per day?

I was on 64mg 3 times per day for about 18 months with no noticeable side effects.Now on 48mg 3 time per day maintenance dose.

Not sure if your side effects are linked to the betahistine. I am always hot in bed.

Did you have these symptoms before going on the 6x3xper day. What is your previous betahistine history. ie what dosage were you on before going on the high dosage and for how long.

if you previously had no problems whilst on a lower dose then maybe not linked if you went straight onto high dose then maybe.

Regards

harry

ladar · « **Reply #20 on:** Mar 11 2014, 03:56 PM »

Hi

As my earlier post in this thread said, my consultant agreed I could increase my Serc from 1x 16mg 3 times a day to see if it improved feelings of pressure in head and ears as well as tinnitus and hyperacusis. So I've been on 2 x 16mg 3 times a day. Initially I thought this increase may be helping as I began to feel slightly better (not brilliant but a bit better even to going out for lunch with a friend). And then wham! I had a very bad vertigo attack last week and since then I've been having dizzy episodes every day lasting from about 20 mins to 4 hours. The attack last week was a really strange one where it felt as though my brain had a jolt/been zapped and then I went really dizzy and thought I was going to faint. Also if I'd been standing up I'm sure I would have fallen over? Has anyone else felt like this with a vertigo attack or could it have been a type of drop attack? I've had similar attacks as this twice before with about 6 months in between them and GP put it down to unexplained faint.

The reason I ask about drop attacks is that usually the vertigo attacks obviously start with no warning (and there wasn't any warning last week) and balance is really all over the place and eyes feel like they are out on stalks (this didnt' happen last week either) and I wasn't sick at all. Must admit I don't understand drop attacks at all so presume I've never had one. I will be seeing my GP next and will mention the this odd attack in case there is anything more untoward happening which migh need checking out. Usually vertigo attacks have been happening about every 3 months so really not sure what's going on at themoment.

So at the moment I feel as though my head is permanently swimming, with fog brain and whoozy head and ears and fullness is really horrible. With no confidence about going out anywhere on my own again.

I haven't taken any Serc for the last 3 days but am going to start back on the 1 x 16g 3 times a day and seen what happens. Has anyone else had any adverse effects from increasing Serc dosage? Oh to feel a little bit 'normal' again if that's at all possible with this fickle disease.

Linda

ladar · « **Reply #21 on:** Mar 11 2014, 04:18 PM »

Following on from my last post - forgot to mention that at no time did I lose consciousness during these strange attacks.

Linda

harry · « **Reply #22 on:** Jul 23 2014, 02:13 PM »

FURTHER UPDATE ON HIGH DOSAGE BETAHISTINE.

I have just been for my six monthly check up with my consultant. So I thought I would give you an update.

Still no vertigo attacks since Sept 2012!!!!!!! Hearing loss remains constant with overall improvement of about 20db since going onto higher dosage.

Consultant says that this may signal that my MD is coming to an end (burn out) which he says is what is to be expected with MD. My right ear burnt out about 10 years ago. The only way to really tell is to stop all treatment (slowly) and see what happens.

I am not ready to do that yet as this is the longest I have gone without vertigo for about 15 years and I don't want to "rock the boat"

He fully understands and there is no pressure for me to decrease SERC.

Have agreed to stay on 48mg x 3 x per day with a further review with him in 9 months. ( I may go down to 32mg x 3 x per day in 3 months time to see how it goes)

So his view is that either the high dosage SERC is working and/or my MD is finally coming to its end. What I am left with in terms of damage to my ears etc is how I will remain. ( remember that I had previous hearing problems which means that my hearing loss is worse than normal)

However I would rather have knackered ears than vertigo.

Interestingly he said that no vertigo for more than one year indicates that the MD has or is coming to it's end. As he says that MD stops at some point for everyone. But he also said he had someone who was on betahistine for 20 years with no vertigo. Stopped taking It and it came back! So I don't know. But I have read that it is a common belief that MD only last for a period of time then stops ( burns out ) although this period can be many years.

Harry

harry · « **Reply #23 on:** Apr 30 2015, 05:40 PM »

Just been to see my consultant for my review.

9 months on since last post.Still no vertigo

Tinnitus still there but had that before MD anyway and fullness sometimes happens. Hearing remains the same

Now on 32mg x 3 x per day since Jan 2015. No change in symptoms.

Going down to 16mg 3x per day for 3 months then coming off SERC $:-\$ Consultant feels this is the only way to check if I am free of symptoms. He then feels that we can attack it with SERC if it comes back.

He feels that I am in a remission period and after this long it is unlikely to come back,but it could !

He feels that the remaining tinnitus and fullness is down to previous damage to my ears (middle Ear) before MD.

As with all things MD you never quite know but I am enjoying life again and although I still have limitations due to MD and my general Deafness I no longer live in fear of the next attack and the "will I be ok today feeling". My stress levels are much lower.

On the stress point he stated that he feels that my reduced stress levels have a big impact on my MD and strongly feels that stress has a major part to play in triggering MD attacks.

going back in 9 months for another check up.

Harry

asiaasia · « **Reply #24 on:** May 01 2015, 08:46 PM »

Thanks for the update, Harry. I dropped my dosage from 32mg/3x daily to 16mg/3x daily and, almost immediately, my tinnitus noise level rose. So, I jacked my dosage up to 96mg/x3 for a day, or so, and my noise disappeared completely for short while.

Quite a shock to the brain, I would imagine.

Anyway, my maintenance dosage will stay at 32mg/3x daily. On the few occasions when the tinnitus noise level has increased, jacking the dosage up a bit does the trick

Good luck, Harry. I look forward to your trial results.

NEWOSA65 · « **Reply #25 on:** May 04 2015, 11:49 AM »

well done Harry... it may never return!

Emma · « **Reply #26 on:** May 15 2015, 07:39 PM »

Brilliant news Harry

harry · « **Reply #27 on:** Sep 11 2015, 10:37 AM »

Latest update

I am now down to 16mg 3 x per day with no change to symptoms and I am due to come off SERC all together at the end of Sept.

I am really undecided whether to proceed or remain on the maintenance dose of 16mg x 3 per day.

After many years of coping with MD I am now 3 years without a vertigo attack

and although I still have other little things related to MD and my hearing is poor. I am in a good place.

It's a tough call as it would be nice to not take the medication, but is it better to take a maintenance dose that may be keeping the worst a bay? My consultant says that we can't really tell unless I come off the SERC and then attack it with the SERC if it comes back.

I would be interested to hear from those who have had a break from the vertigo etc for a while as to whether they still take SERC or not.

asiaasia · « **Reply #28 on:** Sep 12 2015, 07:45 AM »

You could download, print and present this PDF file to your doctor ...

http://www.mediafire.com/view/lpb0v991ew69v66/High-dosage_betahistine.pdf

You could also show him these pic's of my SERC prescribed container ...

http://www.mediafire.com/view/xz58ybm3xz88a51/serc02.jpg
http://www.mediafire.com/view/3eq6hq8dkm3pb5t/serc01.jpg

Most doctors are oblivious to the benefits of high-dosage SERC. I had to educate my GP, my ENT specialist and even the pharmacist. If you want it, you have to go and get it.

Good luck, all.

harry · « **Reply #29 on:** Sep 12 2015, 11:22 AM »

Hi asiaasia

I think you misunderstand my post. I have been taking a very high dosage of serc for many years 4 x 16 x3 times per day and have been using this post to update people of the progress as at the time no one else on this site took such a high dosage. I am still not sure if anyone takes 192mg per day. My Md is now stable and I have been reducing my SERC in consultation with my consultant who is very knowledgeable on MD and high dosage SERC.

My decision is whether to stop taking it now that I have had no vertigo for 3 years or stay on a maintenance dose of 48mg per day.

Regards

Harry

asiaasia · « **Reply #30 on:** Sep 12 2015, 04:12 PM »

Hi harry:

Sorry. It was more a general post for all members. My maintenance dosage has been at 96mg/day for about a year now. I tried lowering the dosage but tinnitus made a comeback so I think I'll keep it where it is.

peace/out

chrissieg · « **Reply #31 on:** Sep 19 2015, 08:02 AM »

Hi Harry

I have been without a vertigo attack now for 4 years and am able to lead a life virtually similar to that before MD struck. I have reduced hearing, find some environments rather challenging and have the tinnitus, but, as we all know, nothing is as bad as the spins. I still take 16 x 3 Serc a day though and don't wish to stop and risk the potential problems with life back on hold. I think and hope that they are not doing me any other harm and see them as a preventative rather than a reactive drug in the same way that someone with epilepsy would take a maintenance dose of their meds rather than just when they have an attack. We are told MD is not curable so it seems to make sense to me that I should continue to deal with it.
However, I can see how interesting it would be to try without and the attraction of being off meds. But, you would be braver than me! I will be very interested in what you decide to do and its outcome.

Take care
Chrissie

harry · « **Reply #32 on:** Sep 23 2015, 03:16 PM »

I have decided to stick at 1 x 16mg 3x per day for a bit longer. probably till my next review in Jan 2016.

Not sure I am ready to take that leap of faith just yet. I feel that if I stop then I will be back to "when will the next attack be ?" anxiety time.

Long term goal is to stop, but not just yet.

Harry

harry · « **Reply #33 on:** Jan 20 2016, 03:24 PM »

LATEST UPDATE.
Went back to consultant for 9 month check up. Have had the feeling that Md is lurking in the background for a couple of months and knew my hearing was down.(hoping it was a wax issue)

No vertigo for 3 years 3 months. Although have felt that it could happen a couple of times but it didn't.

Tinitus a bit worse than normal

Consultant confirms that hearing is down and I have noticed the distortion of sound much more.

Fullness is more noticeable

Result - Back up to 3 x 16mg x 3 times per day and back for a review in 3 months. Will go up to 4 if it continues much longer.

Feeling a bit down but I know this happens with MD and I still have no vertigo so it could be worse. Will take things easy for a couple of weeks, wait for the betahistine to kick in and remain positive that this is just a temporary setback.

The Wobbler · « **Reply #34 on:** Jan 20 2016, 04:36 PM »

So nothing else changed Harry? No stress, illness, exercise changes, dietary changes etc. so that you can attribute the worsening of symptoms entirely to a lower dose of Serc? (excluding the random and spontaneous changes that the beast throws us from time to time).

I think that you went down to 16mg x3 about 9 months ago in April 2015. When did the deterioration start and was it a straight line or noticeable blips?

harry · « **Reply #35 on:** Jan 20 2016, 05:06 PM »

No nothing really changed. I had a cold in september

Started to notice hearing was a bit off in October it was intermittent in that it would go down at points in the day then recover. gradually got worse to the point about 3 weeks ago where it was just poor all the time. I put it down to the cold or wax but it just didn't improve. Consultant removed some wax but said it wasn't enough to support hearing loss and the cold could still be having a residue effect hence the 3 month check up.

You are right I went down to 16mg x 3 time per day in the summer.

Who knows what's happening

We will try the increased SERC and go from there

The Wobbler · « **Reply #36 on:** Jan 20 2016, 05:48 PM »

A cold must have an effect on the immune system. I wonder if whilst it battles the cold it weakens its defences elsewhere, and gives the beast a chance to re-awaken from its slumbers.

I note that it wasn’t the other way round with the MD deterioration preceding the cold.

MissCheeva · « **Reply #37 on:** Jan 21 2016, 01:09 PM »

Hi Harry,

That sounds just like me. My hearing deteriorated before Christmas for no reason that we could work out. I did have a cold which is what I thought was the problem, but when the cold cleared up my hearing didn't return. I had a couple of vertigo attacks and went back for another steroid injection. I am on the same dose of Betahistine as you with a low salt, no caffine diet. I am just glad I am not spinning now. I hope you hearing improves soon.

Best Wishes
MissCheeva

The Wobbler · « **Reply #38 on:** Jan 21 2016, 08:44 PM »

But what if MD isn’t that obvious where cause and effect are instantaneous? What if the cold weakens the immune system thereby letting the beast awaken from its latent state and out to do its’ stuff and the consequences are not seen until later.

One of the frustrations of this condition is the lack of immediate and/or obvious cause and effect.

Why does Serc take time to work? Most people report a time lag between starting and symptomatic relief.

harry · « **Reply #39 on:** Jan 22 2016, 11:34 AM »

Hi Wobbler,

As with all things MD who knows?

?

I think that there is some thinking around the cold virus triggering symptoms and my own personal experience I have been able to associate two significant losses of hearing and MD episodes after a very bad cold. But then I can still have MD episodes and loss of hearing where there has been no cold in the previous months.

With regards to SERC you are probably well aware that the thinking behind it that it dilates the blood vessels within the inner ear. This probably can't happen too quickly for medical reasons. It is believed that high dosage SERC works and I believe that there is also now a belief that SERC works on a cumulative basis. Which may be why high dosage SERC is working and lower doses take time to build up within the system.

I end as I began

With all things MD WHO KNOWS

jojo · « **Reply #40 on:** Jan 22 2016, 02:34 PM »

Quote from: harry on Jan 22 2016, 11:34 AM

I think that there is some thinking around the cold virus triggering symptoms and my own personal experience I have been able to associate two significant losses of hearing and MD episodes after a very bad cold. But then I can still have MD episodes and loss of hearing where there has been no cold in the previous months.

This recently happened to me. I had a really bad cold in October and following that my MD went in to overdrive and that lasted for around 3 months and through Christmas. I spoke to my Doctor about this fact and she said that it is common for MD symptoms to flare up after a virus. My MD also flares up for no apparent reason too.

Jojox P.S. Lovely to see the site busier and MD sufferers helping and supporting each other once again.

dmj · « **Reply #41 on:** Jan 22 2016, 05:21 PM »

Thank you Harry and Jojo for those posts. I have had a very rough week with my balance. I'm much worse than usual. I suspect I may have a slight cold and for some reason it has affected my ear a lot. I take ibuprofen which seems to help a bit.
dorothy

ladar · « **Reply #42 on:** Jan 22 2016, 05:50 PM »

Sorry to hear how many of us seem to be suffering the effects of colds and coughs and how it is impacting on MD. I too am getting over a cold and cough and hearing has deteriorated quite drastically and fullness has increased so very uncomfortable. Not seeing consultant until May so hoping things improve a bit by then.

Linda

harry · « **Reply #43 on:** Mar 17 2016, 07:57 PM »

Latest update

Have now been on 144mg per day for 2 months.

No change

hearing still down and very fuzzy and distorted. Changes every day and throughout the day.

Fullness just as bad and tinnitus is constantly bad

No vertigo

Gone back up to 192mg and review appointment is next month

We will wait and see

Harry

monicamck · « **Reply #44 on:** Mar 18 2016, 10:37 AM »

Great posts! Thank you for the update Harry. For me, as newly diagnosed (although not Meniere's yet) gives me a better understanding of this illness and its evolution. Thank you.
Hope everyone feels better x

jojo · « **Reply #45 on:** Mar 18 2016, 10:59 AM »

Hi Harry

Thank you so much for posting your update for us to see. It is interesting to read.

Glad you have not had any vertigo.

All the best

Jojox

harry · « **Reply #46 on:** Apr 20 2016, 02:50 PM »

Latest check up today.

Hearing remains the same as in January. So down overall from last couple of years. But not as low as it has been in the past.

HOWEVER my hearing changes throughout the day and I was tested this morning when it was not so bad. It can go a lot lower during the day.

Hearing distortion is still a major issue and when it goes down like this and when it goes lower it makes working out what people say VERY difficult. However distorted hearing is common in MD so it is to be expected.

Let us also not forget that my hearing was very bad pre MD.

No rotational vertigo but a couple of near misses in last few weeks. By that I mean no room spinning ( MD Vertigo) but distinct dizzy feeling with objects appear to be moving/shaking and a feeling that it could go into a full spin at any moment.

Have been back on 192mg per day for 1 month. whilst I had hoped for an indication that things were improving nothing yet.Will carry on for another month and if no change then up to 240mg and give that a try.( not been that high before )

I have experienced this type of period of prolonged distorted hearing loss before and I am hopeful this will sort itself out soon.my hearing is always a bit distorted but this is much worse ( than normal) but like I say has happened before so we will wait and see.

Consultant is of the opinion that MD is active again and believes that the SERC may (

) been stopping full on vertigo attacks.

Remission period officially over after 3 years

Back for another review with consultant in 3 months

Harry

ladar · « **Reply #47 on:** Apr 20 2016, 04:00 PM »

Hi Harry

So sorry that your remission is over (hopefully only for the time being). You were doing so we'll having three 'good' years. Here's hoping the increased Serc starts to have some effective soon.

I'm now on 144mg a day having increased to that from 96mg a day when the fullness got so bad I didn't know what to do with myself. It relieved the fullness after a couple of weeks and it has been manageable to the point where I could go out without suffering massive anxiety. But it is gradually getting worse again so am waiting to see how much worse it gets and may consider increasing it again. I am doing this without GP or consultant's knowledge (luckily I had a supply from when I was on a high dose a few months ago). I know my consultant won't be happy with this high dose but if it helps me to cope with the MD better I will have to tell him I want to continue. (Its strange as when I saw a registrar and my GP when I did the first increase the first time they were happy but as soon as I saw the consultant he said no, too high. But I am going to stick to my guns this time.

When you were in your remission did all or just some of the symptoms disappear or did they just reduce to a lower level? I have been almost three months without a full blown vertigo attack and consider that a good length of time for me. I am a bit on tenterhooks at the moment as this is the second time I have gone that long without an attack and am hoping the same thing won't happen again. It seems so much harder coping with the vertigo when they haven't happened for a while.

I do hope your remission starts again soon and that I can reach the same milestone as you, it must be bliss. Did you manage to forget about it at all during that time?

Linda

harry · « **Reply #48 on:** Apr 20 2016, 04:39 PM »

Hi Linda,

Thanks for the comments.

Whilst in "remission" I had no vertigo,hearing improved a bit, Fullness was still there and tinnitus didn't really change ( but I had tinnitus before MD) although it stopped in one ear.

I never forgot about MD and still felt the need to keep an eye on things. I always felt it was there to some degree but not fully active. I started to lead a more normal lifestyle. The improvement in hearing was very nice.

I have had MD for a very long time and could easily go 3 months or more with no real attacks at times. But never really went more than 5/6 months before another cluster of attacks so 3 years was very nice

I learnt along time ago that life with MD is never straight forward,but you must not let it run your life.You will often feel anxious about the "next " attack but there is nothing you can do to prevent it happening so I try not to worry about it happening now I simply accept that's what life with MD is.

6 months of poor distorted hearing is beginning to annoy me and to be honest is a bit of a concern (with my existing hearing problems) but I can't do anything apart from try the increased SERC. so I have to just wait and see.

Harry

harry · « **Reply #49 on:** Jun 06 2016, 05:01 PM »

No real change in terms of my MD at present.

Still have bad distorted hearing,fullness and dizzy feeling most days.

Tinnitus worse and now have the return of musical tinnitus as well !!!!

Some rotational vertigo over last few weeks and seem to be affected by some visual vertigo as well. which again I have had in the past.

Dull headache most days.

anxiety/stress levels are higher than normal.

After 3 months on 4 x 16mg x 3 times per day with no real change. Now increased to 5 x 16mg x 3 times per day.

All in all not having a great time at the moment. Although I have had some spins and a fuzzy/dizzy feeling ( most days ) it's the distorted hearing that is affecting me the worst at the moment.

On the bright side going on holiday in 3 weeks (although the journey could be a challenge ) but lots of sunshine and food to look forward to.

Consultant review due on 20/7/16

Author Topic: high dosage SERC update. (Read 19425 times)

NEWOSA65

NEWOSA65