Sorry to hear that. I don’t think you can stop the spinning, Chris, only dampen the sensation with meds whilst you wait for it to abate. One of the reasons I don’t believe this is some migraine ‘hallucination’ of spinning, I believe it’s literally fluid moving past your movement sense and causing the experience you have. That has a plus side: means it’s working!
It’s this spinning whilst looking left, no spinning looking right and half way in the middle I can’t seem to shift properly although I popped an Amitriptyline and Pizitofen and it was ok again 10 minutes later although I just had a massive quick spin whilst writing this!!! Plus I suspect the fact the tinnitus has got louder as well is no coincidence. Last few days when I improved the tinnitus was quieter.
Also can you help me with this because I can’t find the answer on the internet probably because I can’t phrase it right. If you look at something straight ahead and focus on it would a normal person whilst moving their head up and down and side to side be able to focus on what they are looking at without that focal point moving? For me even at my best that focal point moves. I ask because it’s so long since I was “normal” I have forgotten if that is the case where the brain compensates so when you move your head so things don’t move.
tinnitus is often due to ear pressure, from what I understand, reversible if and when the pressure drops, varies and changes with different pressures.
If your inner ear is playing games, you get nystagmus (one ear) and oscillopsia (both ears I believe), this messes with your focussing. Again reversible if you calm the ear. If you are spinning you will be certainly getting eye issues too. I found Amitriptyline really helpful for dampening the link between ear and eye. Suggest you consider upping Ami dose if you haven’t got to a point where your eyes are more independent. For me that happened as low as 20mg, at which point nystagmus had all but gone for me, at least wasn’t affecting me.
Interesting especially regarding the oscillopsia because I have googled that and it’s not far off from what I experience. I have attached my results from Vemp tests. You may find it interesting although I have no idea what it all means!!!
He/she doesn’t draw any conclusion for the reasons for this? Not brilliantly helpful.
No not great eh? More questions than answers and that didn’t come cheap!!! The “guess” was Basilar Migraine but no real options bar Serc, which didn’t work!!
Turnitaround - Not sure if you are in the UK but what would your suggestion be in seeing another Specialist? Are there specific specialists in vestibular “diseases” or a particular hospital or clinic in the UK? Or is it literally a case of ENT again? Apologies if I have asked this before.
I saw a neurologist in a fully specced balance centre and three ENTs. To manage your expectations I am quite disappointed with ENT medicine. It’s amazing how little they can do. And as you say they don’t come cheap! But without a reasonable diagnosis you are left confused and frustrated. I’ll PM you a specialist I most appreciated. Your mileage may vary though.
Well all an interesting development. Friends dragged me out tonight for a meal and a few drinks. Picture the scene - this afternoon I was totally sober and went to the chemist to pick up a prescription and thanks to my 2nd attack of the day and was walking on what felt like an inflated bouncy castle under my feet!! Was lucky I made it home without falling over. This evening had said meal and a host of beverages of the alcoholic kind and I write this 8 hours without an attack which is quite an achievement this last couple of weeks.
Interestingly it made me think back and I rarely drink but on every occasion when I have had vertigo I have never had an attack whilst out with friends having a few jars of whatever. Now after several beers, two glasses of wine and a couple of JD’s I should be wobbling all over the place (and that’s without the vertigo) but nope, at the time of writing it’s the longest waking period without an attack and I feel remarkable stable on my feet,.
So the question is does alcohol have an interesting positive effect on vertigo, and if so how and why? Or is it because you are relaxing and not being worried or anxious? I would be very interested to see if anyone has had similar positive experiences with or after alcohol because this is quite a weird realisation.
Most of my vertigo attacks happened in bed so chances of it happening in evening were slim. That’s down to head pressure which increases when lying down.
Alcohol definitely masks diziness as it compromises your balance ‘acuity’. Yes there will also be a relaxation dividend.
Finally, social distraction is an awesome relief mentally, so well done for getting out its really good for you psychologically!
Laura, how is the vertigo now? (and your MAV in general?). I was thinking of using the chair sleeping trick.
In fact, I had a major step improvement in my condition after taking a long haul flight. I wondered if that was down to saving my ear from head pressure for longer than normal …
That’s great if your symptoms have lessened! I’m still trying to find the cure without the use of the meds. I have been taking vitamins (B2, Magnesium and Histablock). I even started getting acupuncture for some digestive issues and sinus problems. That really worked for sinus, but I still have occasional dizziness. I had vertigo 3 times but all within a 2-week period when I could feel the pressure in my head/ears. (Right before the acupuncture.) So, I am better than before, but not 100%. I no longer feel dizzy or like if I’m floating every single day, but I do still have times when it occurs. For me, I think it is all related to my sinus issues, because when those are not a problem, neither is the dizziness. I am going to get some herbal drops from a Chinese Medicine Doctor in a couple of weeks to see if it can stop this tinnitus. If it works, I will definitely post! Thanks for asking. I hope your symptoms stay away for a while! It’s nice to have a break and actually feel normal, if only for a few days. Sleeping in a chair definitely helped me get through the bad vertigo. At least I got some sleep during that time! Keep me posted on your progress! Take care, Laura.
Interestingly my friend had dizziness with sinus problems and after the latter were resolved her dizziness went away.
Great that you are trying to cope without meds! It can be done as someone managed it on this board before but nevertheless it’s very brave of you!
Tinnitus. Ugh. Mine has got easier to deal with over time. Yes let us know how you get on with that. I suspect that if the vertigo and the ear pressure hasn’t gone, the tinnitus will take longer to go.
I wasn’t very focussed on the diet before and seem to make great strides without worrying about food. But now I’m off meds it feels like I’m close to the last hurdle and want to see if I can do all I can to make it. Plus I need to find a way to stop the bed vertigo. Last one was a shocker that messed me up for a day or two.
So this morning, instead of my usual whole milk porridge (with chocolate!) I had special K with almond milk!! Wasn’t too bad but it’s a shame, I do love my porridge!
I have a sneaky suspicion the trick with the diet is to keep to low potassium. Avoiding the 6 C’s helps a bunch with that.
I do need to research and test the potassium theory. I got away from the diet, but still don’t eat nitrates, red wine, of caffeine. (I miss caffeine SO much). I did go wheat/gluten/dairy free because of some digestive/inflammation issues. I’m told the wheat here in the United States is horrible, and it causes inflammation. I figured, if it’s that bad, why not cut it out? I feel so much better not eating it.
Anyway, I’m glad you mentioned potassium. Thanks!
And in response to Chris’s question from a month ago, when I’m out drinking, I’m not as bothered by my dizziness, so for me, it must relax me. At least there is that! Ha!
Drinking relaxes me too and I can forget my symptoms. However I’ve noticed it can upset the ear fluids as I can end up with a little wooshy tinnitus for a couple of hours afterwards.
I have stopped taking the Amitriptyline because it was giving me a terribly dry mouth but continue to take Pizitofen and touch wood things are fairly stable at the moment.
I have also got new glasses because I apparently have a prism issue in my eyes. For those who are unaware it means that if I look at something the right eye vision is higher than the left. The optician finds this out when you look at the red lines in a UK based opticians. If one line is higher than the other is a prism issue. Not sure if that effects the vertigo but if there is a prism problem it obviously can’t help it.
Coffee – Can’t do without it sadly!!!
Chris the dry mouth goes. But it’s a few months of taking it before it does.
I love coffee too!!
Don’t forget these aren’t permanent bans. It’s to fix the issue. Then you may be able to return.
Well the dry mouth is back with a vengeance and I am only taking Pizitofen so it can’t have just been the amitriptyline that was the issue. Well weird because it went and now it’s back and worse than ever along with quite bizarrely an incredibly dry nose!!! Not sure if it’s the medication or whether I have “yet another” thing going on. Bloody hell it’s constantly one step forward and two steps back!! I’ll come off the pizitofen and see if that helps although it might of cause the vertigo to get worse.
One good bit of news is that my appointment has finally come through for London. Not Prof Shakeel Saeed though but Dr D Bamiou or a member of their team. A tad annoying considering I specifically asked to see the Prof but I guess you get what you are given these days!!
@NewbieChris In a previous post you mentioned getting prism glasses. Have you noticed a difference since wearing them? If you don’t mind me asking, was it a smaller wedge than they normally use? I’m just asking because there’s a practice here in the U.S. that claims that if the exam shows even a slight misalignment in the eyes a fraction of the prism measurements can relieve symptoms such as headaches, dizziness, etc. The symptoms match MAV and what I’ve been going through to a T, but at the same time my ophthalmologist is skeptical and I agree it seems too good to be true, like a scam. Maybe this idea is more well known and respected in the U.K. than in the U.S. Thanks!
Hi Jess no problem at all. Not really sure if the prism’s have worked or not to be honest. I haven’t been having too many “attacks” recently only really suffering the motion intolerance and a few brief “here we go moments” but not sure if that’s down to prism, medication or just a general lull in my symptoms.
Only thing I can say is according to my optician the prisms do help my sight more than without because without my eyes are seeing images higher on one side than the other. I can honestly say that since I have had the glasses I haven’t had as many headaches but again glasses or coincidence I don’t know.
Not sure what it’s like in the US but just to try I basically took in one of my old frames and had a basic pair of lenses made with the prism so it didn’t cost to have a try,. Problem with having a prism issue though is that apparently it gets steadily worse so it’s not really worth having expensive glasses because they will only need to be changed the following year. That’s for me anyway.
Have you tried Dr Surenthiran at the Medway balance Centre on the NHS https://www.medway.nhs.uk/services/ear-nose-and-throat-ent/balance-centre.htm
i was referred by my GP and only took about 4 weeks to see him. he is by far the most renowned migraine/vertigo chap in the UK (migraine variant balance disorder as he calls it).
(or he does private appts https://finder.bupa.co.uk/Consultant/view/25821/dr_shanmuga_surenthiran)
he is a neuro otologist and he really is very good.
hope that helps. let me know if you have any Qs.