I have just had one of those real bad pressure sessions, followed by the whole head tingling, fuzzy vision, hot/burning sensation in ears. . . .what has caused this, I've eaten all the right things, not drunk anything I shouldn't have, I'm not stressed, don't have a fever. . .etc. . .etc.
It's left me feeling very deflated and tearful.
FED UP!!
Jayne

Just thought I'd say hi as we both have the same condition and I'm also 5 wks in to a relapse. I got ill four and a half years ago. Had a fantastic nearly symptom free year, and wasn't on the board much, stressed out over something badly 5 wks ago and have been hit ever since.

Just curious if you also suffer from light sensitivity? And when you say head pressure what do you mean. I'm not on a diagnosis hunt - I know EXACTLY what I have - vestibular migraine. More curious to see if there's anyone else currently who feels like their face/head is being slowly squeezed by a vice. Even my nose is in on the act, like someone has their hand on my face and is trying to push it in to my head. Its such fun, not. I'm also in the uk.

As for what triggered this - what gets me is that on the food side of things I am getting the feeling it can be really tricky to know what your triggers are. I follow a loose migraine diet - no cheese, choc, alcohol, but sometimes wonder whether I should be doing a hardcore elimination diet. Food triggers can hit up to 48 hrs after eating something. In your case it could even be the change in the weather - it's suddenly quite sunny again - alternatively no reason at all - pure bad luck.

Are you on a migraine preventative - mine - propanonol - seems to have stopped working. I'm in to see the neuro in a week - let's hope he comes up with something,

best,

Hi Sorry to hear you've been hit too!
The head pressure is just as you say, sometimes it feels like someone has put a hand up my nose and is punching my brain. . . .does that make sense???? Other times it's a feeling that there is something under my skull trying to force my brain down, so difficult to explain. The bridge of my nose feels sore to touch and my nose itself is very dry, post nasal drip is on overdrive though, but I'm sure I would feel better if it actually came down my nose.
I have tingling sensations on my scalp and down my face as well.
Light sensitivity I do have but only when changing rooms to bright lights and dark rooms with bright TV screens, once my eyes have adjusted to the light changes they don't hurt, it only lasts a few minutes. I have taken to driving at night with sunglasses on though as the lights from on coming cars really do my head in. Computer screen contrast is turned down.
I have been doing the elimination diet and I can't think of anything that has triggered this off at all, I will stick with it though, no point in giving up and it has helped me to loose 8Lb. . .lol.
I don't take migraine meds at all, my Doc suggested staying off them for as long as possible, he said he will review this in August when I see him next, he felt because I have very few bad headaches just these other symptoms, that they may not work very effectively. I still inhale steam twice daily, do VRT's and balance exercises.
The warmer weather is the best time for me, summer I love and Christmas as we usually fly off to somewhere warm, so the warmer weather the last couple of days I don't think will have triggered anything.
I think this one is down to the pure bad luck, it brings back all those insecurities about what else could be going on though. I've gone back on the "quiet life" pills to stop the stress/anxiety aspect kicking in, they should give me a good nights sleep anyway.
Hope you get some answers when you see you Neuro. Lets hope we wake up tomorrow feeling great.
Jayne

Hi there,

What sort of doctor did you see - a neuro? Ent? I'm guessing if the doctor said that to you that you don't have symptoms 24/7? How often are you hit like this? If you are suffering with these symptoms a lot then the advice the doc gave you is bad advice, if you are a migraineur with constant symptoms, you should be on a daily preventative medication which could halt the process completely. These symptoms ARE migraine. The drugs people take called triptans which are migraine abortives taken during a typical migraine headache would very likely not work for symptoms like this as they are mostly effective for migraine pain, BUT daily preventatives are absolutely for symptoms like this. In fact many people on this board have been cured with just such medications and would still be ill now if they hadn't taken them. I am seen in a neurotology and neurology department in London and that is how they treat these symptoms - always. I was mostly symptom free for a year because of a low dose of a beta blocker, sadly after a year it seems to have become ineffective - but I was pretty damn happy for that year. I have upped my medication so hopefully that might kick in soon and I'll be rid of this again. If this is a fairly rare thing for you then I could understand avoiding the medication, but if not it makes no sense at all.

Sorry to be so blunt but over my four and half years ill I have seen enough docs to know some don't have a clue what they are talking about, especially when it comes to dizziness. It's a fairly specialised field. A very simple answer to why you would have had another attack is because you haven't been given the medication that's likely to stop them. In fact doing VRT when you are a migraineur who isn't medicated for the migraine could very likely trigger your dizzy symptoms. The general consensus amongst dizzy docs seems to be treat the migraine, get that under control, then do the VRT if it's still needed. Although often the medication does the job and VRT isn't necessary. Vestibular migraine isn't like vestibular neuritis, which gets better through a process of compensation. It rarely simply clears up on its own. People generally take a preventative for a period of months or sometimes years and can then try weaning off it and see whether it has interrupted the migraine cycle. Yes, it can just stop one day - migraine works in phases, but wouldn't want to chance it to luck.

And yes I know the sensation of feeling like my brain is being pushed down very well.

Have a look at the Dr Rauch's otology clinic clip on migraine in the archives if you haven't already. I think there is also the article on migraine associated vertigo by Robert A Battista - which is one of the best articles out there. I think both of them discuss the treatment of the condition with preventative meds.

best,

What sort of doctor did you see - a neuro? Ent? I'm guessing if the doctor said that to you that you don't have symptoms 24/7? How often are you hit like this? If you are suffering with these symptoms a lot then the advice the doc gave you is bad advice, if you are a migraineur with constant symptoms, you should be on a daily preventative medication which could halt the process completely. These symptoms ARE migraine. The drugs people take called triptans which are migraine abortives taken during a typical migraine headache would very likely not work for symptoms like this as they are mostly effective for migraine pain, BUT daily preventatives are absolutely for symptoms like this. In fact many people on this board have been cured with just such medications and would still be ill now if they hadn't taken them. I am seen in a neurotology and neurology department in London and that is how they treat these symptoms - always. I was mostly symptom free for a year because of a low dose of a beta blocker, sadly after a year it seems to have become ineffective - but I was pretty damn happy for that year. I have upped my medication so hopefully that might kick in soon and I'll be rid of this again. If this is a fairly rare thing for you then I could understand avoiding the medication, but if not it makes no sense at all.

Hi hbep. I am so glad you addressed this as I tried to post to you about this earlier (healthboards would not allow me to post for some reason) as it had me a little upset even though I knew this doctor has to be wrong. As a matter of fact, three months into this ordeal for me a dum doctor prescribed me Immitrex which would never have worked in my case, I now know this. I took one and threw the rest out. It never helped me at all and made me feel like I was having a heart attack.


People generally take a preventative for a period of months or sometimes years and can then try weaning off it and see whether it has interrupted the migraine cycle. Yes, it can just stop one day

This is what Howies headache specialist told him as well. He said some people can come off it and feel fine after taking the med for a period of time.



The brain being squeezed in a vice and the heavy headedness is something that I have had exactly 2 years, 3 months and 3 days now. Never went away, but on the brighter side, I have over the last few months experienced periods where these symptoms weren't as severe. I hope it just stops one day. I also felt for about 6 months like the palm of someones hand was on the inside of my head pushing outward behind my nose. I am so glad that symptom went away and has stayed away for almost 2 years now.


Hbep has your doctor ever said the preventatives can just stop working for someone after they had a long period of feeling great, like yourself? How long did the preventative take to start working the first time you started it? Maybe it is just taking your body time to adjust. I hope so.

One last question, my appointment with the headache specialist is finally next Wednesday. I am terrified but feel a little relieved if that makes any sense. I think I have prepared myself for the visit if he will allow me time to talk. Is there any advice that you have in your experience that I should know before the appointment? You've dealt with this 2 years longer than me so just in case I may have missed something, I thought I'd ask.

You two feel better soon........Gloria

Hi Hbep. VM or VN was the diag I got from a Neuroto team in the Midlands. The symptoms are not constant I can have maybe 3 sessions like this one a year and after recovering slowly can be at 95% the rest of the time. Each bad attack I have is never as bad as the first and I think the recovery time gets quicker each tiime.
I'll take a look at the Dr Rauch's, although I think I've checked this one out before.
I've woken up with an awful stiff neck this morning, off to see the chiro later. . . good timing!
Hope you feel better soon.
Jayne

Hi Gloria and Jayne,

Apologies Jayne, if the symptoms are very infrequent then it makes total sense re the drugs. Didn't realise that or that you were under the care of a neuroto. If I sounded exasperated it's simply with the amount of dreadful docs people have seen during my time on these boards. The bad advice some people get and also the lack of sympathy makes me want to tear my hair out sometimes. But this obviously isn't the case in your situation. For what it's worth sounds like VM not VN to me. The tingling and light sensitivity aren't features of VN.

Gloria,

Don't be terrified about the dr's appointment. In your shoes I would approach it with low expectations, my mission would simply be to get the drugs I needed. As I said above, some docs can be really unsympathetic and unhelpul. I have seen some great ones but also some really bad ones. At the end of the day I would take it as read that you need a preventative for your head pressure. The chances are it is migraine - if you go by the Bucholz assertion that all headaches are on the migraine spectrum. It doesn't really matter whether he diagnoses you with - vestibular migraine or Vn which you are failing to fully recover from because of migraine. Or even if he stares at you blankly and fails to come up with anything significant at all other than that he'll treat you for your head pressure. The important thing is to get treatment. You know enough from these boards to have a fair idea of what is going on. As long as he gives you a migraine preventative to try the diagnosis he decides on is irrelevant. I say this in case he's unhelpful and you end up feeling dissapointed.

At the neurotology department I go to, the first two drugs they generally try are propranonol - a beta blocker - which I am on, and amitriptyline - a tricyclic anti depressant, which I can't take because of a stomach problem which won't be an issue for you. I know you aren't keen on the anti seizure/epilepsy meds - nor am i - not since I tried one - so it might be worth bearing the above drugs in mind. They are of the more benign SE variety. Of course there are also the calcium channel blockers like verapamil, although I think the jury is out on how effective that is. Hopefully the doc will be good and will figure out what's right for you.

Re my drugs failing to work now - it's often the case that a drug can stop working or that you need to up the dose. I am now on double the dose and touch wood may be seeing slight improvements, although I am battling with the tiredness SE which can make me dizzy in itself, it could take a while for my body to sort it all out. Or alternatively I may need to try a different drug. I am sticking with this one for a while as the increase can take a few weeks to take effect. As of today the head pressure lifted a bit and I had periods where I felt less lightheaded. The light sensitivity is also a bit better. The symptoms have been pretty brutal and I am nowhere near out of the woods, but I am grateful for any signs of improvement. I have been thinking of you as my tinnitus has doubled in intensity during all this. It feels like my ears are angry - this has happened before during episodes and touch wood, it generally gets quieter when the symptoms ease up.

Let me know how the doc goes. I see my neuro on Monday,

best,

Hi Hbep.
No need to apologise hun, I fully understand, Docs, Neurotos, Neuros. . . I don't think any of them know the exact casues or diagnosis, I truly beleive that unless you have suffered any of these symptoms you can't possibly begin to understand, thats where we are one!
You mention angry ears. . .good description....know exactly what you mean.
Fingers crossed today is better still for you.
Take care
Jayne

Jayne...

Have you noticed improvement overall? Do you do your vrts religiously...and when you do...do they still make you dizzy?

I am sorry you don't feel totally well.

Jayne...

Have you noticed improvement overall? Do you do your vrts religiously...and when you do...do they still make you dizzy?

I am sorry you don't feel totally well.

Hi Charlotte, I don't feel as bad as when all of this first happened, i do my VRT's daily at the moment they are making me dizzy, but when I feel bout 95% they don't so much. I also do balance exercises and at the moment I'm struggling with those real bad, yet 2 weeks ago, I could rattle them off???
Hope you are keeping well.
Jayne

What does your physician or PT say? Have you noticed a steady increase...Let me make myself clear...I have noticed...bad periods...then increased good periods, then bad periods..but not so bad. Occasionally, some bad patches that are worse than usual...then a bump to a better dizzy state. Is this what you have noticed?

Yes Charlotte, thats it exactly, each "bump up" is a little better, but still the blips (which vary) in between, but I am 18 months down the line and still having the blips, so it takes time, no quick cure here is there?
I'm on phone support only with my physio now, unless I need to see her again. The NHS here in the UK has long waiting lists for PT's so they move you onto phone support as soon as possible, there wasn't much more she could show me and phone support works well.
Jayne

Jayne...if ever you want some exercises I do...let me know.

Thanks Charlotte, I have sheets of them I'm doing at the moment, each sessions takes up about 3/4 of an hour, twice a day. if you want some of mine just yell!!
Jayne

Hi Hbep,

I appreciate your advice regarding my headache specialist visit next week. You are so right in what you said and I am going to go in there without the high expectations that get us all down when something does not go the way we plan or hope (like Scotts more recent visits to the headache specialist). You gave me great advice to ponder over and that is it does not matter at all if he diagnosis me with something or not, but what matters is that I hopefully get something to help me with some or hopefully all of my symptoms.

My husband made reservations last night for us to go the coast in July. I kept putting it off thinking that I really don't want to go feeling like this. I found myself thinking about you and the fact that you were able to enjoy life again all last year so I keep hoping just maybe, I'll feel a little better taking a preventative. Besides my husband convinced me that I can stay home and feel bad or feel bad while looking at the lovely beach. Besides it will be just in time for the final Harry Potter book to be released.


I am happy to hear that you have seen some small improvements in your symptoms finally. Hopefully it will continue over the next few days and you will be back to having another fantastic year by mid-Spring. I will keep my fingers crossed for you. I hope your tinnitus settles down too. Mine has always been loud and bothersome; however, when I was coming off the klonopin, every time I would decrease the doseage, my tinnitus would become louder with a high pitched tone to it. So I know what you mean. I find that I am the happiest when I am outdoors as the tinnitus is not as noticeable so I am happy the warmer weather is finally here. Angry ears and I know each other very well. I sometimes think angry ears and the tinnitus are much worse than the headaches and dizziness.

By the way, I wanted to mention to you that I do think avoiding ALL the magraine tiggers not just the common ones like cheese, chocolate and caffine really is helping me. I follow a very tight diet probably even more so than Dr. Buccholz suggests. That MSG is a big big big trigger it seems and it is hidden in so many foods just under the alias names Dr. Buccholz list in his book. I do not know what your government allows in your foods, but here in the US they are loaded with msg and other artifical flavorings, preservatives and colorings. I have been shopping at a specialty store and have pretty much eliminated these triggers. Two other ones that Dr. Buccholz does not mention is red dye number 40 and yellow dies. They can be big triggers too. I didn't think at first the foods mattered to me as I didn't have any problems prior to this crap, but since following it very strict since January I ate out over the weekend twice because of a busy schedule and I even tried to avoid big triggers and Monday and Tuesday were nightmare head pain days. Today after 2 1/2 days of watching everything I put in my mouth, the pain is not nearly as bad. Therefore, I think I have found evidence that food does really play a part in all this. I think the one symptom that I notice improving with the diet is the actual head pain and pressure.

Thanks again for the advice. I really appreciate it and I am going to think about what you said and try and remain calm until after my appointment. I hope yours goes well and that by Monday, you notice even a bigger improvement so that you can stick with the current med. Good luck and I hope your ears find a reason to smile again soon.

Gloria :wave:

Hi Gloria,

Thanks for your thoughts re the migraine diet. Got to say I found his advice very, very hard to follow. Just got a bit overwhelmed in the supermarket and didn't know what to buy. Although this morning I couldn't resist these amazing health shop yoghurt nut and fruit bars - I have a hunch that nuts are a trigger andfor me and felt worse all morning. I have beren thinking about the diet side of things a lot and wondering if I should have another push at getting more strict with it.

I think your hubby is very wise to suggest you go away despite the symptoms. Sometimes when I feel lousy I am really loathe to go and do things - sociliase etc but then surprise myself by feeling better for being out and about and having some distraction. He's right, why feel ill at home when you could just as well feel ill with a nice view and holiday atmosphere. And yes, looking on the positive side, maybe you will have found some relief by then.

I am better than I was although spent today feeling utterly fed up. It really is so very, very hard to go back in the dizzy pit when you've been out of it. I'm just not used to feeling rubbish 24/7 anymore. I struggle with accepting it - I suppose I also feel like I've done my time and am angry with it for being back. Stupid I know as there isn't a time limit on this stuff, but that's just how it feels. It seems to have really taken a hold this time, feels v. different from the mini relapses I had during my good year, it's like it's got its claws in to me again and it's going to take a while to shirk it off.

I loved Scott's recent reference to SSRI withdrawal being like trying to get out of the mafia - it doesn't want to let you go - that's exactly what I feel with this illness. I'm done with it but it isn't done with me.

Really hope you get some relief from your symptoms soon. I'll say this - when it lifts and you taste normalicy again, the day to day has never ever felt sweeter. Must be like people feel if they are let out of prison. Just doing regular stuff without these damn symptoms is bliss.

best,

Hi there, all of this sounds so familiar. The doc/physio therapist think that I have eustachian tube blockage. I think that I more or less proved that it is, due to a recent flight that I took that did not go well for me as far as the ears are concerned.

But I have two other things that are going on that I have not noticed anyone talking about...

1. Fatigue, I am always, for the most part, very tired.

2. Trembling, especially when I wake up in the morning. It seems to be worst if I am sleeping on my sides, better if I sleep on my back. It's almost like a vibration......sometimes, when I get tired during the evening, I will tremble a bit....

Does anyone get what I described above...

Thanks and have a nice day,
Gary

Hi Gary I get the trembles, I can feel them and see them but no one else can, I'm always asking can you see me shaking and all I get is blank looks!!
When I'm in the throws of a bad attack I am tired. . . . more weak than tired really, I'm keen to do things to take my mind off it all but feel shattered after and have to rest?? The brains way of dealing with it I suppose.
Hope you feel better soon.
Jayne

Thanks Jayne, so much....I have been worrying about this for quite awhile, for the life of me trying to figure out ow an ear thing could cause the trembling, which I find quite disturbing. I have never had anxiety in my life, but it is daily, especially in the mornings too. But I guess that is part of it..

Thanks for the info... I have ETD, my tubes are blocked, will this ever go away...I sure hope so, I have been dealing with this for a year or more, and finally get to see an ENT, but not until July

Gary