Last night I struggled to get to sleep for hours and then woke at 5.30am really hot with the room spinning badly. I got out of bed and the spinning carried on, the landing was swaying, went downstairs and was on my hands and knees on the kitchen floor with the room moving feeling like I was going to throw up, have a panic attack and faint all at the same time. I spent the last few hours on the sofa then in bed wide awake not moving and I have just been slowly moving around the house. I am not spinning but every time I move my head or move positions I feel all vertigo-ish and awful. It has set me off crying and having a massive melt down. I am totally freaked out. I had some vertigo type things in July and August as my relapse was taking hold but I hoped now I was on nortriptyline that would be over. This is the worst vertigo I have had and I am so scared. I know the ‘v’ in MAV stands for vertigo but I am so worried what is going on with me. I don’t know what to do. I am wondering is there some kind of blood flow problem in my brain but is that actually migraine anyway…I don’t know. Crying is giving me headache but I can’t stop. I am really fearful! x
Jem
It could be a migraine attack , do you get ear symptoms with the vertigo?
I do think vertigo is the worst symptom I get it too and I shake i have been known to scream when it happens I hate it! Could you get some Valium or have you got stemetil or sturgeon? I have found sometimes a big attack of vertigo sorts me out dizzywise and I go back to feeling more normal a few days after its happened maybe this will happen with you I hope so.
I feel terrible again today been crying all morning I feel like I just do not know what is happening to me really losing the will to live at the moment its so unfair we have this and so young too!
Jem
Ask your doctor for pitzo to try I think its one of the best especially for acute vertigo x
Jem
The fear in your post is almost palpable. I get it totally. Been there. You’re right, vertigo is terrifying. I used to try to fight it, would roll off the bed or sofa if I could and desperately try to move around on my hands and knees. More often than not though I wouldn’t be able to move a muscle, couldn’t even lift my head off the pillow, not even a jot, without spinning and losing the plot altogether. My heart would race and the sickening panic rise. And such a terrible feeeling of foreboding, as to what was going to happen next. It was AWFUL. The scariest thing ever.
I’ve had these real vertigo attacks for many years and now when I get one I don’t fight it any more, I give in to it, accept that’s how it is for now and eventually it subsides and when I feel ready, THEN and only then do I set about seeing what I can do in terms of trying to move and getting through the residual dizziness and MAV symptoms that inevitably follow. While it’s going on though I just lie still - I have no choice really. What I mean is that I don’t even begin to contemplate moving AT ALL until I judge I might make some progress in that regard or else all I do is torture myself anf beat myself up because I can’t do it! I’ve done that (lain still) for hours and sometimes days but it always eventually subsides. And yours will too.
Please try to allay your fears, concentrating on them will make it all so much worse. Just talk to yourself calmly and tell yourself it’ll pass, difficult as that must seem right now. There are tablets you can take to help in such acute vertigo attacks, so perhaps that is someting you could ask your doctor about if you wish, I must say though that I’ve tried a lot of them and found that the passing of time seems to work as well for me. But they can help you not to feel quite so helpless in such situations, at least you feel you have something to alleviate the problem which in itself can go a long way to taking away the inevitable anxiety.
Really hope you feel better soon.
Brenda
Thanks Donna and Brenda. It is so comforting to know I am not alone. It is the scariest thing ever and I am a total wreck today. I can move about in the home slowly now but I will take your advice Brenda and not do much at all. My mum told me to try and email Dr Silver to get some reassurance about all this because he didn’t really do that at my appt. I still haven’t got his letter.
I haven’t got any other symptoms except dizzy/vertigo right now Donna, although all the crying is starting to give me a headache so got to calm down and try and stop that. I know just what you mean about losing the will to keep fighting this.
Do you think it could be all the stress of the wedding and going to the church yesterday which has caused this latest vertigo attack? x
Could well be Jem. With hindsight I can see that some of my worst vertigo attacks have been following a build up of stress. And it’s often when you do whatever it is that has been stressing you (as in going to wedding)that afterwards you get what’s called a let -down migraine. And vertigo is just another arm of migraine.
Brenda
Jem, I have had many many of those severe vertigo attacks over the years, I have just got over a run of them, 8 in 5 months, horrendous, but the pattern usually is first the vertigo, then the day after or day after that migraine, usually once the head pain starts the vertigo goes. Sometimes its the other way round, bad migraine for day or two, then vertigo after.
Brenda, what are the tablets that have helped you in an acute vertigo attack? I have never found anything to help. Stemetil does nothing when its a bad attack, stugeron dont help me either. Is it something else?
I am off on holiday tomorrow and flying and have had a two day migraine which I still have, worrying I will have another attack while abroad, as happened twice before, and theres absolutely nothing that helps but time. I think thats the worse thing about these attacks the utter helplessness.
Christine
Poor thing! I can so relate to this.
I use my Valium. And just try to stay calm. Also, Meclizine may help you as well.
Good luck!
K
Jem, my heart really goes out to you. The spinning vertigo attacks are the most horrendous things ever.
I used to cry every day and sometimes get quite hysterical. I really upset my husband &kids but just couldn’t help it. Every morning I would say “don’t cry today” and every day I did.
I hope you are feeling better by now
Regards
Anne x
Jem, I am so incredibly sad for you. What a terrible experience. True rotational vertigo is the worst feeling ever, and my heart goes out to you. I can completely relate to crying making you worse. I swear the same thing happens to me. In my case, when I cry my neck and the back of my head get tight making the pressure in my head so much worse. I’ve learned to whimper softly, and it makes me feel better.
I prayed that your suffering eases very quickly. I truly hope it does. Please try to get some sleep… Kennedy
Thanks for all the supportive messages, it really helps to know I am not alone. I was really bad yesterday and ended up taking a valium to try and calm down. Today I have been taking it very easy and moving about the house slowly, hoping to not have a repeat of the other night’s horror x
So sorry you’re having such a rough time right now. Hang in there…you’re not alone.
You’re pal and fellow freak (said in jest of course)
Judy
Dear Jem,
I read your post. It brought me back to the first time I had a severe, sudden vertigo attack. I was making the bed and all of a sudden a whirling sound started loud in my left ear and strong pressure pressed on my head like a tornado and I went down to the right. I fell right on the bed and had to clutch the bedspread to keep from skidding right off the bed. I have never felt such force and horrible whirling sound. It only lasts , for me, about 2 minutes, and then it just starts to subside. I immediately throw up, as the spinning is so severe that it’s like being on a fast carnival ride that spins. My whole insides are horribly upset, with vomiting and diarriah ( can’t spell that) and that lasts for hours, until my system settles down. It only happened to me maybe 8 times a year, and in between those attacks, I got the headaches, terrible headaches where I took an Imetrex to relieve it. This went on for a few years, with Dr’s thinking I had a heart problem. Finally got diagnosed with MAV and got some Verapamil, Nori and take Lorazapam if needed. 10 months later, I am almost completely better. I have to watch triggers and I do.
Your post made me tear up immediately, Jem. I felt so sorry for you, I just wanted to hug you and tell you it might get fixed, if you find the right drugs and the right Dr. maybe? Please have hope, don’t give up. I KNOW how it feels and I understand exactly what you are saying. Don’t give up.
Jem - just wanted to drop in to send you love. This condition really stinks - and is so scary at times - the whirling vertigo is hideous, just hideous. I hope you get of this chronic phase really soon . X
Jem, I know its tough but remember you can and will get better. It takes time and patience but you will start to feel better
Are you doing the MAV diet and the lifestyle changes?
— Begin quote from “cmoc”
Brenda, what are the tablets that have helped you in an acute vertigo attack? I have never found anything to help. Stemetil does nothing when its a bad attack, stugeron dont help me either. Is it something else?
— End quote
Unforunately Christine I’ve no other help to offer. Yes, I was referring to stemetil and stugeron, along with cinnarazine and various others I can’t remember now because it was such a while ago. Like you, I’ve never found anythng to help except time. Hope you’re enjoying your holiday. I think you’re so brave to fly. And I hope this time it’ll be third time lucky and you’ll remain migraine free for the duration and the return flight.
Brenda
Hi Brenda,
Thanks for the good wishes on my holiday. They worked! First holiday I have had no major migraine and no dizziness!! Just one day a bit dizzy as I actually went right round the clock on no sleep at all. I did book 11 days instead of a week and took it slowly, paced myself this time, which might have helped, but I ate fry ups (hey I am on holiday!) but stuck to chicken and fish mostly, no puddings etc.
The run of vertigo attacks I believe was caused by drinking different decaf coffees, I stopped and the vertigo stopped.
Highlight of the holiday was I got up close and touched dolphins, I am one happy bunny, something I always wanted to do
Christine
Oh that’s wonderful Christine. How lovely for you. And to break that pattern of holidays=headaches, what a bonus. Sounds like an altogether dream of a holiday what with touching dolphins and all. Great memories - bet you won’t ever forget the experience. Really pleased for you.
Also encouraged that just because something has happened once, even twice, doesn’t mean it will necessarily happen a third time. In other words, MAV doesn’t always have the last word!
Brenda