Ear problems anyone?

[minnime63]

Hi all! I've suffered from tinnitus for years - mostly when I've been run down or ill but it's been constant for the last two. I now get a rushing sound when I bend over and also an intermittent "echoing" of voices or the tv. It's like my ear is spasming! Does anyone get this/know what it might be? I'm useless at describing symptoms, sorry!

[Lure2]

Hi, I think I understand what you mean but I have never had that. I have always a mild Tinnitus in my ears but I do not think of it because I am so used to it.

I wonder how your INR is behaving? Is it steady and in range? I know you wrote that your Consultant wanted to raise it from 2.5 - 3.5.

As to the Tinnitus and ear-issues I suggest you see a Specialist if it will not be better soon.

Best wishes to you from Kerstin

[minnime63 in reply to Lure2]

I am actually at 3.1Kerstin! It's not been behaving well at all but just about to start self testing, as want to see if INR has any bearing on the seizures. I'm going to ask my doc to refer me to an ENT specialist, I think 😗

[Manofmendip]

Hi.

You may need to have your INR raised. I used to have to have it around 4.0, when I was on Warfarin, now on Fragmin.

Ask to be referred to Peter Savundra at The Portland Hospital in London. Peter is a Consultant Audiovestibular Physician and a colleague of Prof Hughes. He has a very good understanding of APS and Ears and he is a lovely, patient centred Dr.

Best wishes.

Dave

[minnime63 in reply to Manofmendip]

Thanks Dave. I'll talk to my GP 😊

[Hughes-Comrade in reply to Manofmendip]

Dave I'm trying to remember if you take anything in addition to fragmin injections like a baby aspirin or other. Thx..

[Manofmendip in reply to Hughes-Comrade]

Hi. Yes, I take baby aspirin too. Dave

[Hughes-Comrade in reply to Manofmendip]

Thank you for your reply. Forgot to ask if the baby aspirin made a little difference and if that is staggered a few hours later after the injection or the same time. I'm going to ask my doctor about this. Thx.

[Manofmendip in reply to Hughes-Comrade]

I take the baby Aspiring after breakfast and another, later in the day, if I feel I need to (Dizziness etc).

I inject Fragmin first thing in the morning.

Dave

[Hughes-Comrade in reply to Manofmendip]

Thx

[Lure2 in reply to Manofmendip]

Hi Dave, So the Fragmin does not help with the symptoms?

Best wishes from Kerstin

[Manofmendip in reply to Lure2]

Hi Kerstin. Yes, mostly it does. I sometimes get flares of symptoms though but nowhere near as many as I did on Warfarin.

Best wishes from Dave

[Lure2 in reply to Manofmendip]

Are you Lupus Anticoagulant Dave?

Did you selftest? I know you were on almost 4.0 in INR.

Lately I have had some problems to keep my INR high enough so I had had to take Fragminshots also several times. Then I take two sorts of anticoagulation. I know I should take it when I am under an INR of 3.0 but it can be difficult to tell exact and I have had symptoms like AURAs and

[Lure2 in reply to Lure2]

It got away too fast (sorry).....difficult to think. You and I have had a bit the same neurological symptoms I think. I guess I can feel safe with both drugs but I do not like how it has been the last time though. I wonder what should happen if I also took Baby-Aspirin.

I will work it out. Wanted to speak with you about this. Thanks for your answer.

Kerstin

[Manofmendip in reply to Lure2]

Hi Kerstin

No, I'm not LA, just ACl positive.

I used to self test, yes.

I take baby Aspirin as well as Fragmin.

Best wishes.

Dave

[Fra22-57]

Yes I've been same sincing having APS.Thought it was another add on to have.waiting to see specialist

[Lure2]

Hope you can selftest. Tinnitus better after I started Warfarin.

Dave is right! I also saw one of our leading Experts on balance/ear-issues here at Karolinska hospital in Stockholm. He told me to start Warfarin.

I have forgotten now if you have got other neurological symptoms from your APS. It could of course have an other cause with your ears as we are no Doctors but often we feel better when we have our Waran steady at a rather high level. Everyone should have the possibility to selftest!

Talk to your GP and I hope he will understand.

Kerstin

[Lure2 in reply to Lure2]

Sorry. I wrote "Waran" which is Warfarin in Swedish.

Kerstin

[minnime63 in reply to Lure2]

Yes, Kerstin... most of my symptoms are neurological. Im seeing a neuro next month about seizures, have had a silent stroke and have two aneurysms on the brain. I have also been dx'd with lupus now. The hospital is too cautious with INR which is why im trying self testing. I have a machine on loan from the Hughes Syndrome foundation xx

[helentad]

Hi. I don't have your health issues or take warfarin but I do have tinnitus and was recently diagnosed with something called Meniers Disease. I had tinnitus and it started to get a lot worse and I noticed hearing loss and balance issues getting worse so asked to see an ent specialist. They did a balance test with these goggle things you wear over your eyes that have a camera in and they watch how your eyes move and wobble etc. The last part of the test they put warm water in one ear and watch your eye reactions then they do the same on the opposite side, my eyes didn't react at all so they did the same test but with cold water and again my eyes didn't react so that meant my ears have been so badly damaged no treatment could be done. It looks on my notes like a doctor did think I had meniers 16 years ago but did nothing about it and if he had the I could have had treatment which would have stopped the damage and the disease from progressing. Anyway I'm going on sorry. Your problems with dizzyness, tinnitus etc sounded very familiar to me early problems so my suggestion would be to see an ent as soon as possible to rule anything out and possibly receive treatment of needed.

Hope everything works out for you and you feel better.

[minnime63 in reply to helentad]

Hi, thank you for responding. I did have that test about 20 years ago when i had balance issues. In fact the tinnitus started just after that test! I had thought menieres, so will get a referral xx

[Lure2]

Very good that you can selftest!

I wonder if you like I have the antibody Lupus Anticoagulant? That can make selftesting more difficult. Doublecheque your INR with the lab in the vein rather often to begin with.

I advice you to see a Specialist of Lupus and APS which is a Rheumatologist. Look for one who knows APS which is very important! Some Specialist can also be a Hematologist.

Kerstin

[Lure2]

I hope you can have an INR around 3.5! Is that so?

Kerstin

[minnime63 in reply to Lure2]

Kerstin, yes i am LA, which is why I have the machine on loan firstly. I want to be sure it works ok before buying. I have NEVER had venus draws, always finger prick! This week my INR is 3.1. Last week it was 2... it's a nightmare!

[kittymum78]

I was told that it was a actually a symptom of the APS I wear a hearing aid now in one ear to counteract it and it works well

[minnime63 in reply to kittymum78]

Ah, thanks 😊 did you see an ear nose and throat specialist?

[kittymum78 in reply to minnime63]

Initially yes, my gp referred me to ENT then they referred me on to audiology after they had checked there was nothing else going on it was actually quite a quick process which was good.

[minnime63 in reply to kittymum78]

Well that's good! Shame it took so long in the first place! X

[Lure2]

My machine is a CoaguChek XS and I have used it for 4 years now.

As i am Lupus anticoagulant it can be difficulties as the machine-value does not correspond with the test at the hospital-lab in the vein. It can differ about 1.0 (If I have 4.0 on the machine I may have 3.0 in the vein at the lab.)

Therefore you should have a Specialist to talk to about this. At a lab they do not understand about APS.

Therefore when i started selftesting i had to take a fingerprick test with my machine and two hours later take a vein-test at the lab at the Hospital. Then we could see the difference and that it always was the SAME DIFFERENCE (0,1 - 0,3 in INR) from time to time. I did this for over one year and now i only go to the lab when I want to know or every two or three months.

It is the vein-test value that counts!! This is exstremely important.

Kerstin

[minnime63 in reply to Lure2]

That's what I have... just waiting for the lancets and strips. Using the machine means I can switch to the nurses at my GP practice, who seem to be much more switched on than the hospital clinic!

So my INR, which is currently at 3.1, was tested using finger prick. Does this mean it could actually be even lower? Beggars belief!

[Lure2 in reply to minnime63]

Please talk to someone who knows . It could be the same with you as you are LA. I selftest now since 4 years as the difference is about the same between the two readings.

I understand that you do not believe me but please get information so you know you have got a correct INR. I have a Hematologist here in Stockholm at Karolinska Hospital who knows APS and a coagulationclinic with Experts to talk to any time I want to.

Hope I helped you but I guess you do not like it. Get your own info!

[minnime63 in reply to Lure2]

Something lost in translation, Kerstin... I certainly DO believe you - I very much value what you say, when I talk with the nurses I will tell them this, thank you!

[Lure2 in reply to minnime63]

I doubt the nurses will understand what you talk of. This is a rare condition with APS and also LA.

I am primary APS and you have also Lupus. What has happened with prof Hunt? I reread yesterday and I discovered you have seen her and she also wants you to raise your INR. Talk to her, she will lunderstand and perhaps give you Plaquenil or some other drug. I only know about APS not about Lupus more than what I read here every day.

Good Luck!

Kerstin

[minnime63]

I will email prof Hunt, perhaps she can direct the nurses to do the test the right way, Yes I am on Plaquenil now.. I believe it takes a few months to fully feel the effects, thank you, Kerstin xx

[Lure2]

Yes, I have heard here (do not need Plaquenil myself) that it can take quite a long time before it "kicks in" (learned that expression) . Ask prof Hunt about what she says about "vein-test" and fingerpricktest on the machine and about the difference , if you have any. It can happen when LA-positive but we are all individuals and unique.

Kerstin

[minnime63 in reply to Lure2]

Hi Kerstin, well I had a response from one of Prof Hunt's team, he said it's ok to use fingerprint test. Last time I was there they tested venously and it was 3.1, which was more or less what it was at my local clinic the day before. Perhaps there are different practices depending on the country we are in? It would be so much better if everything was standardised, don't you think?

[Lure2 in reply to minnime63]

Hi again,

I am Lupus Anticoagulant and the test in the vein in the hospital-lab is not at all the same as my CoaguChek XS-test. What is important is to find out before you can test yourself, that the two tests (CoaguChek XS in finger and vein-test at a lab) , give the same INR-result.

For me it always differ, but always the SAME difference with a discrepence of 0,1 - 0,4, which is OK.

I had to doublecheque these two tests for a year before I was allowed to take care of my own testing. I now doubletest within a couple of hours the two INR-numbers every second or third months or when ever I need to do it.

This is the way we do it in Sweden and I guess, as you have the same machine and illness, it should be the same for you.

BUT perhaps even if you are LA the two INR-tests do not differ at all and you are like others here with the two other antibodies. Then it is no problem to selftest. This you have got to find out !

Kerstin

[minnime63 in reply to Lure2]

I will be very cautious, thank you Kerstin xx