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Author Topic: high dosage SERC update.  (Read 17353 times)

Offline Darren13

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Re: high dosage SERC update.
« Reply #50 on: Jun 06 2016, 07:17 PM »
Harry I'm exactly the same as you I've not really had much change in symptoms for 10 months. I have problems pretty much every day. I increased my Serb from 16mg x3 a day to 32mg x3 a day not really found it helps. And usual low salt and caffeine.  I guess after 10 months like my doctor suggests I'm going to have to come to terms with it now and excerpt it's a long term problem.i lost my driving licence and I've as good as lost my job and I'm looking at ill health retirement in the face, so can it get much worse lol.
On a better note I'm getting counselling and the deaf society are helping me.

Offline harry

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Re: high dosage SERC update.
« Reply #51 on: Jun 09 2016, 03:41 PM »
Hi Darren,

MD is very much a long term condition and there are no quick fixes. We do however get remission periods which we must make the most of.

I took ill health retirement about 3 years ago at 49. It was the best thing I did !!! and I would recommend that people who have that option look into it as it may be a positive option.

The big issue for most people is "can I afford it?" I would suggest that people look into the figures and options before deciding that early retirement is not an option. You will be surprised on what income you can actually live on if you have to.

In my case I knew at some point I would have to stop working( I had severe hearing loss before MD) so I started planning and saving about 5 years before hand.When the time came I looked at the figures and with my wife working some extra hours it became a positive option.

The reduction in stressful thoughts about having to work, doing a good job, worrying about the sack etc is very important in coping with MD.

Of course not everyone is able to consider early retirement due to pension arrangements and length of service,but it sounds like for you it may be worth looking into.

Harry


Offline chrissieg

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Re: high dosage SERC update.
« Reply #52 on: Jun 09 2016, 04:00 PM »
Hi

I know this may be a controversial opinion and it is my personal only view but ....
If MD is so adversely affecting your life , its quality and its potential, why are people not prepared to consider something more permanent and drastic such as steroid or gentamicin treatment or even a labrynthectomy? I just feel you only have one life and it may have to change but that must be better than having it on hold indefinitely. Worth discussing with experts at least .
I'm sorry if that sounds unsympathetic, I am just puzzled why these treatments don't seem to be mentioned much on the forum anymore and why consultants aren't offering these options? I think I would go that way after a year of trying gentler treatments if necessary.

Chrissie
Chrissieg

Offline harry

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Re: high dosage SERC update.
« Reply #53 on: Jun 09 2016, 05:09 PM »
Can't speak for others,but in my case any form of invasive treatment will not be considered due to the fact that I only have hearing left in one ear and that is already down by about 70%. So the risk is considered too high. Very much a last resort thing if at all.

But I agree that some people have had good success with surgical treatment for the vertigo side of things.




Offline Darren13

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Re: high dosage SERC update.
« Reply #54 on: Jun 09 2016, 05:42 PM »
Hi Harry
I agree I also have only one ear that works and I'm down to about 70% in the other.  I haven't been offered anything else in forms of treatment from my ENT specialist and he's even said on my second appointment nothing else we can do for you learn to live with it. I guess the NHS is strapped for cash and are cutting back. I've read the other treatments only work about 50% of the time and can do more damage than good.
Yes Harry I've done 25 years in a local government pension it may be worth a bit if it come to having to be retired off early. Just seemed so daunting at the age of 51. But you've done it at 49. 

Offline The Wobbler

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Re: high dosage SERC update.
« Reply #55 on: Jun 09 2016, 06:01 PM »
Darren

You are so lucky that you donít work in the private sector.  Imagine the Sports Direct approach to one of their employees with MD!  :'(

Offline Darren13

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Re: high dosage SERC update.
« Reply #56 on: Jun 10 2016, 12:15 AM »
Yes very lucky,  but when you're  lumbered with MD you don't always feel too lucky as I'm sure you'll know.

Offline sylvespa

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Re: high dosage SERC update.
« Reply #57 on: Jun 10 2016, 08:05 AM »
Hi All,

I felt I needed to join in with this one!

I'm just returning to work now after 10 months and although I haven't got my licence back I'm lucky that I work in the NHS as a manager and am able to work out of my local hospital on a very part time basis, all part of a phased return to work, until I can apply for my licence back. (Three months well controlled symptoms so my consultant told me).  I have a disabled bus pass which I got when I lost my licence and the journey is only 25 minutes on one bus so very doable.

I'm curious to find out about ill health retirement as I was getting to the stage of loosing my job before a plan came through from my manager and HR to manage the local hospital, as the previous manager left at short notice, luckily for me!

I was told by my consultant, who has been fantastic, that ill health retirement is very difficult to get with MD due to the uncertainty of the condition and that remission can happen in many cases. 

To be successful in getting ill health retirement you have to demonstrate that you will never again be able to do the job which you were employed to do, something I think would seem difficult to prove given the level of uncertainty.

I'm currently taking 192mg a day of Serc and actually find its helping to control my symptoms, makng them less severe and less frequent, meaning I can remain at work and function. If an attack does occur it's minor and I need to take a Stemitil, sit quietly in my office and wait until it subsides, which is normally only 20 to 30 mins.  Not everyone would be able to do this I know.

For me I swear by high dose Serc and fortunately so does my consultant.  He's now referred me to a specialist centre in Leicester to help with my lost balance which is a real issue for me, especially at night.  I've lost over 80% balance in my bad side and my good side isn't compensating for this, hence the referral.

I do agree with Chrissie in that I would try all options before changing my life so drastically at my age (I'm also 49), however we're all suffering with different degrees of symptoms, we all do different jobs, we all have different levels of hearing loss (I've lost some hearing and wear hearing aids) and we all have different consultants, some who are fantastic and supportive and others who are less experienced in MD and much more dismissive!

My view is that we have to do what's right for each of us, based on the level of support we have from our employers and the medical profession and hope that whatever happens our lives aren't damaged further by this most unpleasant disease. 

Good luck!

Paul








Offline Darren13

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Re: high dosage SERC update.
« Reply #58 on: Jun 10 2016, 08:55 AM »
Hi Paul

Yes that's my big problem my job involves driving "no licence any more" and tasks that involve loft ladder and confined spaces work. And lone working
All these activities have been ruled out by my occupation health my doctor and my specialist and obviously I know in myself I couldn't do it any more. For my safety and others.

I'm not an office person I've done the job I'm doing now for 27 years and others similar for 10 before it. They've tried to find a more suitable role for me but unless I want to become a social worker or a teacher there's nothing as yet.

Car journeys as a passenger are difficult still as are bus journeys I can do about 25 mins on a bus before the need of having to get off.

Early retirement filled me with dread at now fast approaching 51, but it's looming ever nearer if no suitable job comes up in the next 2 weeks.

I still awaiting an appointment at ENT to arrive to thrash this out more but I've been waiting 9 weeks already just to even receive an appointment date.  I need another specialist opinion as my specialist seems to have given up. I'm not sure if I'd even get the early retirement even if they were to apply for it but it seems now that's the route it will go down as time is running out fast as my year is up in August.  It just all adds to the stress of everything really.

Offline chrissieg

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Re: high dosage SERC update.
« Reply #59 on: Jun 10 2016, 09:48 AM »
Hi Paul
Great to hear you have managed to get back to work and I hope you continue with this progress. I just wanted to say that the Leicester centre is brilliant. Mr Rea is a world expert in MD and a lovely man! He has a private clinic but is also the head of the NHS Balance clinic and all his staff take their cue from him and are knowlegeable. Andrew Clements is his chief vestibular physio and he is a trustee for the Menieres Society and again very helpful .I saw a young woman called Michaela and she too was great and really helped me with the balance issues - so much so that I managed a Bruce Springsteen gig this weekend , in the top tier at a stadium with thousands of people!.
 I am lucky to live in Leicester and have these resources on tap but I would recommend anyone who can feasibly travel here to ask for a referral to this clinic.
Chrissie
Chrissieg

Offline sylvespa

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Re: high dosage SERC update.
« Reply #60 on: Jun 10 2016, 02:41 PM »
Hi Chrissie,

That's fantastic to hear as its Mr Rea who I've been referred to.  I live near Lands End so it's a long way to travel but having read your reply I'm definitely glad I agreed to go.

Will let you know how I get on when I've seen him.

BW
Paul

Offline Darren13

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Re: high dosage SERC update.
« Reply #61 on: Jun 10 2016, 03:27 PM »
Yes you've been lucky to get that appointment at Leicester Paul.
I've been banging my head against a brick wall trying to get anything to happen like that.
My replys are there's no cure for MD grin and bare it as best you can and learn to live with it, keep taking the tablets.  Not really much help and when I've gone to get a second opinion I'm sent from pillar to post and got no where with it, as I say I'm still awaiting my next ENT appointment after 9 weeks. I'm told expect to wait up to 12 just for the appointment letter to arrive. All adds to the unwanted stress levels lol.

Offline Gatzby

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Re: high dosage SERC update.
« Reply #62 on: Jun 10 2016, 04:44 PM »
I also live in the Leicester area and Mr Rae is my consultant along with Andrew Clements. I cannot praise the staff there at the balance clinic highly enough, don't want to be over dramatic but that team have brought me back from a very dark place.
God is a figment of the imagination according to Stephen Hawking and I agree with him.

Offline sylvespa

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Re: high dosage SERC update.
« Reply #63 on: Jun 10 2016, 05:31 PM »
Thanks Gatzby,

Great to know they're a good team.

Darren,
Would it be worth chatting with your GP to see if he/she is willing to refer you to Leicester direct rather than waiting to discuss again with your ENT specialist. From what you've said the specialist isn't likely to change their mind.

Might be worth a try, anything to help. Although I'm being referred for my balance issues as much as for my MD symptoms. 

My specialist has tried everything to help address my poor balance and so is hoping Mr Rea and his team may be able to help!

Good luck!
Paul

Offline harry

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Re: high dosage SERC update.
« Reply #64 on: Jul 27 2016, 04:12 PM »
Time for an update

Good news my hearing and head are back to pre sept 2015 levels.

Went up to 5 x 16mg  3 times per day (240mg) early June by mid June my head had started to clear and the distortion and hearing loss I have suffered since sept 2015 improved.

Saw Consultant today who confirmed that my hearing is almost back to last years levels. He says the SERC is working again.Will stay on 5 for 3 months then move back down to 4 for 3 months with a review in Feb 2017.

So what can I conclude from this ?

Well for me it would seem that the high SERC was driving my remission and that when I lowered the dose the symptoms reoccurred. It took time for the increased levels to take affect.(this fits previous pattern when the SERC took time to take effect)

This is simply what has happened to me and by no means a scientific proof of high SERC working.

The main issues for me of Vetigo,full head and distorted hearing/hearing loss have been improved and my quality of life is better.

Would this help others ? I think so and would suggest that High levels of SERC are tried but don't expect immediate results and with me things got a little bit worse (vertigo) before SERC kicked in. If I was working I think it would be making a big difference to my working day/life.

Regards

Harry




Offline The Wobbler

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Re: high dosage SERC update.
« Reply #65 on: Jul 27 2016, 06:35 PM »
Question Harry

Does the improved hearing test result co-incide with improvements in other symptoms?  I am thinking here primarily of a reduction in the incidence of vertigo attacks.

It might then follow that whatever causes that reduction (in this case attributed to high dose Serc) would then lead to improved hearing.

However, I have heard others opine that hearing loss is not reversible, but a continuous long term decline with short term fluctuations.  (Oops - I sound a bit like Mark Carney there!)

Confused as ever by this condition that we share!

Offline harry

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Re: high dosage SERC update.
« Reply #66 on: Jul 27 2016, 09:14 PM »
Hi Wobbler

Yes since the hearing got better and by that I mean distortion much much better and hearing up. I have had no vertigo attacks or dizzy feeling. Head a lot clearer and tinituss is not so bad but I have always had tinituss due to other ear problems.

The research on which the high dosage of SERC is based did show a reduction in vertigo and improvement in hearing although my consultant said that the improvement in my hearing is very good from his previous experience. But I still have a loss in that ear of between 50db and 90db due to other issues. So for me any increase is noticeable just like I notice a drop very quickly.

The distortion improvement is massive for me as I could hardly make out what people were saying before.

So I am basically back to where I was last summer although it has only been 1 month I am very hopeful it will continue for some time.

Consultant confirmed that SERC works by increasing the bloodflow around the inner ear and something to do with the fluid in that area .

Harry


Offline The Wobbler

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Re: high dosage SERC update.
« Reply #67 on: Jul 28 2016, 05:39 PM »
My hypothesis is that it is the lack of vertigo attacks that has lead to your improved hearing rather than the other way round.

By own view is that blood flow is important and that moderate exercise can help in combination with the Serc.  However, things are never that simple and there are also other triggers to control including (but not limited to) dietary, stress and taking good care of your immune system.

Offline harry

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Re: high dosage SERC update.
« Reply #68 on: Jul 28 2016, 07:17 PM »
I am not sure one drives the other.  The increased bloodflow would seem to reduce the vertigo effects while it would seem to help improve the cochlear inner ear hearing loss. It would therefore suggest that if I stopped taking it then both would return.

My hearing loss as you know is both middle ear and inner ear due to previous problems with my ears. Therefore it is very difficult to judge why it has improved,but the distortion is considered to be an inner ear problem and linked to Meniere's. The fact that it has improved would suggest that the improvement is linked to changes within the inner ear.

I am not suggesting that the improvements are solely down to the SERC, but for me it is an important part of the treatment plan that works for me.As with all treatments for MD some work for some and others work for others.also with any medication the results will often be different to some degree. Therefore it should not be assumed that taking High levels of SERC will have the same results for everyone. But it is certainly worth considering and given a try as it may help.

Offline ladar

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Re: high dosage SERC update.
« Reply #69 on: Aug 04 2016, 06:40 PM »
Hi Harry

It's encouraging to hear that your symptoms have lessened with a big increase in the Serc.  I hope it continues and that you continue with this latest 'remission'.
I have done similar increases over time with the latest only up to 3 x 16mg three times a day, which made a difference for a while.    I'm very tempted to go up to 4 tablets as the fullness is very difficult to deal with again at the moment. 

However, I know that my consultant won't be happy about this as he's told me on previous occasions to go back to 2 tablets three times a day when I had upped it to 4 tablets three times a day.  If  I increase it  again off my own back and he disagrees that will mean that I wont be able to get my prescription increased.

Would you mind saying where your consultant is based (no name necessary) so that I can then say to my consultant "there is a consultant in -------------- who prescribes Serc at these higher doses without any side effects".  I hope that will then persuade him to increase mine to see if it has an benefit (which I has done before).

Many thanks and I hope things continue to improve for you.

Linda

Offline harry

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Re: high dosage SERC update.
« Reply #70 on: Aug 04 2016, 07:35 PM »
Hi Linda,

I see a Peter West who is a Audio vestbular consultant (inner ear). I see him in Chichester and his secretary is based at St Richards in Chichester.

Hope it helps

Harry

Offline ladar

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Re: high dosage SERC update.
« Reply #71 on: Aug 05 2016, 01:51 PM »
Many thanks Harry

I'll post an update after my appointment next week.  I'm hoping this will help me.

Linda

Offline harry

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Re: high dosage SERC update.
« Reply #72 on: Aug 05 2016, 03:25 PM »
Remember to keep in view that SERC takes a while in kick in and in my view you should allow at least 2 months for any new dosage to take effect and not expect too much too soon.

Also I have to remind everyone that it is not a cure and may not work for some. My own results are great and I am particularly please with the improved hearing. But the last few months would strongly indicate that if I dropped back down then I could expect the symptoms to come back. Although as I have previously said I always feel that my MD is there in the background and that the SERC is supressing the vertigo etc rather than curing it.

Harry

Offline harry

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Re: high dosage SERC update.
« Reply #73 on: Sep 16 2016, 05:45 PM »
3 months on 240mg and no vertigo and clear head and hearing stable/improved. HAPPY DAYS !!!!!!!

Offline harry

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Re: high dosage SERC update.
« Reply #74 on: Jun 01 2017, 09:25 PM »
Been on 192mg per day for about 6 months. Still good and no vertigo attacks since May 2016. Review with consultant in July when he will try and persuade me to go down again. Not convinced about that but am aware that I am on a very high dosage and can't stay this high for much longer.

Offline harry

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Re: high dosage SERC update.
« Reply #75 on: Aug 17 2017, 02:08 PM »
LATEST UPDATE ** Review in July shows no change in hearing, vertigo stopped and tinnitus remains constant. Consultant convinced my Meniere's has stopped and I am now left with whatever damage I have now.Only way to tell is to reduce SERC again and wait and see.For me higher dosage of SERC has made a real difference. Agreed to drop to 3x16x3 times per day for 4 months then down to 2x16x3times per day. with a review in 6 months. Consultant wants to get me off the higher dosage but would be happy to stick with 2x16x3times per day as a maintenance dose for a while.

Last time I went down as low as 1x16x3times per day before symptoms returned.

we shall wait and see.

Offline The Wobbler

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Re: high dosage SERC update.
« Reply #76 on: Aug 18 2017, 02:15 PM »
Keep up the good work Harry.  We need more of this altruistic self-experimentation in the interests of science, and it keeps the board alive as we await the results...  ;)

Offline Rickiemark

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Re: high dosage SERC update.
« Reply #77 on: Aug 18 2017, 05:36 PM »
Hi - I m a new member so this is my first message I believe I have had 10 attacks since 2012 2 attacks I have ended up being taken to hospital by ambulance the last attack is the worse so far I have had it now for two weeks
Lose  of hearing in my right ear continuous ringing feeling very nauseous
And my balance is affected my gp has given me Betahistine Dihydrochloride 16mg 3 x daily today's there is no improvement
I would welcome feedback from other sufferers thanks

Offline Gatzby

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Re: high dosage SERC update.
« Reply #78 on: Aug 18 2017, 06:14 PM »
Hi Rickiemark and welcome to the forum.
 From my own personal experience I found that 1*16mg betahistine 3 times a day did nothing to help me but when upped to 2*16 mg 3 times a day just over twelve months ago ( i hate to say this !!) I have been spin free for all that period. My balance has been permanently damaged along with the hearing in my right ear but I can cope with that and I have no side effects at all that I know of through taking Betahistine .

I'm sorry you've had a rough time and hope that things will improve for you in the future (as I'm sure they will)
God is a figment of the imagination according to Stephen Hawking and I agree with him.

Offline harry

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Re: high dosage SERC update.
« Reply #79 on: Aug 18 2017, 07:27 PM »
Hi rickiemark
Your situation is a bit unclear.Have you been to a ENT consultant and been diagnosed with MD? Gp's are unlikely to prescribe an increased dose of Betahistine as 1x16x3times per day is UK recommended dose. It's important to remember that MD comes and goes as it pleases and there will be times you feel ok and times (can be weeks) you feel worse.

Use the site,speak to us and try some of the things that people find helpful - lower salt diet (NOT a no salt diet), less/no caffine ,exercise etc. Some of this helps some and some do not. it's all trial & error with MD

Betahistine is not a cure !! but it does seem to help some of us but normally at a higher dosage

Offline The Wobbler

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Re: high dosage SERC update.
« Reply #80 on: Aug 18 2017, 08:31 PM »
Unfortunately Betahistine is not a magic bullet.  But for many, it does seem to be an important brick in the dam wall, alongside dietary and lifestyle changes and other complimentary medications like diuretics.

16mg x 3/day is the standard NHS dosage.  Harry has had success with larger amounts, which is a more common prescription on continental Europe.

When you say an attack for two weeks you presumably donít mean vertigo continuously?  I ask since most of us would define an attack as that room spinning episode that lasts minutes or hours.

Offline Rickiemark

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Re: high dosage SERC update.
« Reply #81 on: Aug 19 2017, 10:09 AM »
Hi thank you for your replies
Yes Harry I've seen a specialist who has confirmed it has MD I am awaiting a scan  hopefully this week

Hi wobbler I have a full pressure in my right ear continous ringing
 Nausea feeling and room is spinning from time to time

Offline The Wobbler

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Re: high dosage SERC update.
« Reply #82 on: Aug 21 2017, 12:29 PM »
One of the first things to do is to start to keep a diary of your symptoms.  That way you can give more specific information to the medics and more importantly start to see if there is a pattern that emerges.  You might for example be able begin to see links and causality with either diet or lifestyle choices.  Alcohol, salt, sleep, exercise, head movements, stress, yeast etc.  Unfortunately the list is endless, but it is a positive step in dealing with a confusing condition.

The Peter Rea videos linked elsewhere give a good overview of different vestibular disorders.  MAV, BPPV and MD all share common links and sometimes they work in tandem.

Offline Silver Fox

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Re: high dosage SERC update.
« Reply #83 on: Sep 07 2017, 03:16 PM »
Hi I'm new to the forum my name is Ed I'm 63 and have been suffering since 2013 with what has now been diagnosed as MD.
after trying Betahistine for about 18 months which my consultant would only go to 96mg per day with no benefit I'm on his list for the steroid injection.

I'm hoping this works as good as he's says. I should have it carried out within the next 6 weeks with a follow up a month later. I shall endeavour to update my experience as and when.

Regards to all.
Ed

Offline chrissieg

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Re: high dosage SERC update.
« Reply #84 on: Sep 07 2017, 04:25 PM »
Hi Ed and welcome to the forum.

It will be interesting to hear about your experience with the steroid injections as it seems there have been advances in the way this is administered which should result in far more successful consequences- I do hope so  for yourself.

The forum is a bit quiet these days but i understand 2- 3 folk are joining each week but rarely posting so I would encourage them to do so. Many of us have been around a  long time and probably got to the point of exhausting anything useful we can add plus many have learnt to cope and manage their symptoms over time. So new blood, points of view, experiences, suggestions , questions and support would be great for newer members who may be scared , ill informed , depressed and suffering.

Keep us informed!

Best wishes

Chrissie
Chrissieg

Offline ahammond

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Re: high dosage SERC update.
« Reply #85 on: Sep 08 2017, 06:28 AM »
Silver fox have you asked your GP to try you on cinnarizine/dimenhydrinate sold under the trade name of Arievert? I found that this worked for me almost straight away where Betahistamine did not do anything.  I appreciate it varies from person to person and might not work for you but I would have tnought it is worth a shot

Offline Silver Fox

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Re: high dosage SERC update.
« Reply #86 on: Sep 08 2017, 08:42 AM »
Hi Chrissie and Ahmmond. Thanks for your replies I will endeavour to keep all updated as I have my treatment.

Due to a problem with the supply of Betahistine a few months back I was given Cinnarizine as an alternative. Initially these seemed to work really well with no symptoms for two months. Then at the end of August I suffered one of my worsted attacks which I'm only just getting over now.

So hopefully the injection will work for me? Fingers crossed.

Ed