I’m curious to know if any one with PBC has been diagnosed also with meuniers disease
I have been asymptomatic PBC for years with few problems . Now at 70 suddenly my blood pressure has risen and I experienced ear pressure , head aches and tinnitus . Last Friday a sudden attack of hideous vertigo lead me to think I was in fact experiencing in culmination what could be meuniers. I had recently had hearing test and seen an ent specialist who diagnosed tinnitus but this vertigo attack has really scared me as the implications on my daily life are far more affecting ie driving
Any thoughts would be appreciated
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boneytoys
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I had tinnitus for years (noise and ringing in ears). Last year I had a serious very strong vertigo episodes, each lasting 2-3 hours. I also had painful pressure, mostly in the right ear, but, later on, I had the same, in both. I went through the battery of tests by ear specialists in January of 2020 and in the end, was diagnosed with Ménière's disease. It doesn't look like there is an exact science in diagnosing this condition. I have pressure in both ears from time to time, but, it's been a long time since I had a strong vertigo. The doctor suggested valium pills, when it happens. Last time it happened, I took the pill and fell asleep. When I woke up, I felt fine, the vertigo was gone. I never had an attack while driving. Maybe it won't happen when your other senses, like paying attention to the road, are elevated. At least, I hope, it won't happen. But, if it does, you just have to stop and call somebody for help. I was diagnosed with PBC in 2016. I have also Hashimoto's thyroiditis, which is another auto-immune system disorder.
None for Ménière's. Generally speaking, trying to stay on balanced diet, variety of foods. I'm avoiding alcohol, too many sweets and carbs, deep fried foods. But, on occasion, I eat even these forbidden foods. Balanced approach is best.
Hi, yes I’ve had Ménière’s disease for 25 years. Deafness and pressure in one ear, tinnitus and unsteadiness. When it first started I had frequent vertigo where everything spinner, I vomited if I moved my head and I couldn’t focus my eyes. I sympathise with you it’s horrendous. But as the years have passed the vertigo is very rare, just days when I feel unsteady. I’ve been taking Betehistine 16mg x 3 daily. Diagnosed with PBC two years ago, so I now think the Ménière’s is also autoimmune. Good luck to you. Xxx
I have experienced the spinning, cannot get out of bed without cold sweat taking me near to vomiting. I also have tinnitus which I feel is stress related for me. I used the Epley manoeuvre which was successful on the first two attacks (can be found on YouTube) although I believe there is a similar therapy with a different name as well. My last attack did not respond to the Epley manoeuvre so ended up at GP who suggested sea sickness tablets which can be purchased over the counter would help. Having bought these and have them with me I have not had a severe attack since. I do though experience a mild spinning if I turn over in bed to quickly. Hope some of this helps, if not maybe a call to your GP can be of help.
Please see your GP when you get the opportunity. Call me crazy, but the cold sweats along with nausea are a red flag for me. It could be anything it could be nothing, but I personally would have my doctor rule out hypoglycemia (which is low blood sugar), diabetes mellitus( especially if you have noticed that you have been urinating more frequently, are extra thirsty, more hungry than usual, or have experienced double or blurred vision as these are all symptoms of diabetes.) I also would have them do an EKG, just to be safe to rule out a silent heart attack, and lastly a chest xray to rule out pneumonia. I apologize, if it all seems a bit extra, but I am a firm believer that it always better to be safe than sorry. Take care.
I'm not sure, but I am definitely going to find out. I am only 37, but I have all of the same symptoms. I also have been experiencing blurred vision and pressure in and around my head and eyes. I thought it was stress, but because of your post I may be able to get some answers. I hate it so bad. It comes and goes, but I have it more often than not, and when it comes on I get so frustrated I just go to bed because it feels almost impossible to do anything. Thank you for your post! I pray things improve for you.
We are in this together . This has only just started so it’s very scary and I too have found this site amazing for giving advice and support but now i seek assurance and advice from others. Quite the role reversal
I also have asymptomatic PBC , but have also had vertigo for the last 6 years . Mine comes and goes , I have BPPV vertigo , no pressure in my ears but Pulsatile Tinnitus ( heart beat sound in ear ) ENT specialist were hopeless and told me I had to learn to live with it ! I have learnt to live with it and tried not to let it affect my life......if I feel at all unsteady I don't drive but I'm usually ok . It's frightening when the room starts to spin , first time it happened I thought I was having a stroke , now I can remain calm and talk myself through it.
As I write I have pulsating tinnitus as you describe and it’s what I wake up with and a head ache . So I guess it’s my itch as if were- as other PBC sufferers have an itch - I have this!! What a turn up as if PBC weren’t enough!!
I just have suffered a hypertensive crisis. Usually, I have lowish blood pressure but I wasn’t feeling well and the gp took my blood pressure which was 199/111. After injections and tablets under the tongue they got it down to a more manageable 155/90 and put on a tablet a day. I too have also had sore ears get dizzy and headaches but no tinnitus. It seems a mystery to me and I am going to talk to my consultant early April at my appt.
I went back to my doctor today abd she has increased my blood pressure medication so I hope it brings relief from the headaches and pulsating tinnitus. Gosh it can get hard ehAll the best
I have had Meniers Syndrome since I was about 23 years old, not very good when I had two very young children. I experienced some quite violent vertigo attacks, one resulting in broken bones in my foot. I had, and still have, tinnitus which can be very annoying but I think I've managed to successfully ignore it, although sometimes it is troublesome. When first diagnosed I was prescribed medication but decided I didn't want to continue with it for family reasons. So, I am now 70, I have led a full life, raising my two boys, married for 52 years to the same lovely man, learnt to drive and have tried exceedingly hard to forget I have Meniers Syndrome and just get on with my life. I have worked all my life and still do so. Get a formal diagnosis, take the meds if necessary, it may sound daft by make the tinnitus your friend and just forget about it. If you experience vertigo, just make sure you are safe. I lost count of the number of times my husband had to rescue me and our boys when I was out and about with them and all before the days of mobile phones, thank goodness for the old red telephone boxes. Keep yourself well and safe.
A month has passed and apart from a massive headache one night my symptoms have eased all except the pulsing tinnitus. I am however in the process of having a barrage of tests heart and brain so regardless I’m having a updated warrant of fitness. Thanks to all for the support abd adviceXx
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