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How long do your bad spells last?

I have what I consider a healthy baseline of 95%. I function well and it doesn’t stop me but is still annoying. Stress seems to be my trigger. It builds up in layers from different parts of my life and boom. Vestibular migraine attack.

Does anyone else have two weeks where they’re in bed waiting for it to pass?

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Yes I’ve had vestibular attacks that lasted several weeks and kept me in bed. Far as I recall without checking my diary longest stay in bed was 11 days continuously without getting up and dressed but the attacks wouldn’t stop then. It was more a question of me meeting my own criteria for getting up which has always been if I can walk to the bathroom and back unaided I can get up even if that only means getting dressed, being downstairs and almost entirely sitting in a chair and observing life passing. The actual attacks once started tend to take ages, at least a month say, to gradually fade away so I eventually find myself back to where I was pre attack commencement. I can’t say as yet I’ve ever had a steady 95% healthy baseline, not ever since I became chronic. Never that lucky. Somewhat depressingly maybe even the most recent family doctor I’ve consulted as good as said it’s not even to be expected. All I could hope for was an increasing number of better days.

And, to your second question, No. As I’m termed a silent migraineur I don’t think I get the very severe headaches some get so I don’t take triptans though the GP offered to try and I did collect the prescription. Prochlorperazine stops me vomiting 100% and reduces feelings of nausea dramatically but not always entirely. Apart from that from my experience it’s a question of just waiting it out until it decides to settle. That’s what every GP I’ve ever dealt with has said too. Where I am there’s no offers of sudden circuit breaker courses of steroids, hospitalisation for IV Magnesium etc etc. It’s unheard of. But other places offer these and other options. Make enquiries.

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Thanks. Mine are silent too. No pain. Just tinnitus, lightheaded and stiff neck. Of course, anxiety!
Sounds as though we are in very similar situations. My 95% is largely owing to venlafaxine. Before this the attacks were harder and the in between not as good.
I’m told the same, no rescue meds. Just lay down and ride the storm.
I’ve been under lots of stress and it’s created a cycle. Need to break it. Once this has passed I need to be very careful what I take on.
How often are your attacks happening and is it common to think will it ever stop? Mine have for 20 years I’ve managed VM but I always challenge it!

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Interesting you’ve been told the same. This basically is the UK approach. Medics have no idea of the devastation VM can caused. It’s totally unappreciated. You say before Venlafaxine your attacks were ‘harder and the in between not so good’. Before Propranolol I had reached the point where there was no ‘in between’. Attacks had become back-to-back. Propranolol dramatically decreased the severity. Initially the frequency too. I thought they’d stopped for good when I went 3.5 years without one but it didn’t last longer than that.

Can’t say how frequent they are now. Yet to establish a pattern. I’d suspect they may be back to where they were pre-medication which was about two a year. That was before I turned chronic (2014) ended up being sent to VRT by ENT and six months of that just pushed me over to the point I suddenly lost my ability to stand up and into seamless vestibular attacks. In all I’m not far short of 20 years myself.

For myself being as mine is so closely hormone linked I think there’s a good chance it might eventually fade so far into the background I scarcely notice it but I’ve never been offered any form of prognosis. I’m sure most sufferers regularly wonder.

As you say we do seem similar in most ways but I wonder. You say your attacks can keep you in bed for 2 weeks. May I ask why. It so bad for the human body to be immobile for so long not to mention the mental anguish involved. I’ve had to stay immobile, lying down eyes closed because (A) opening them caused severe objective vertigo that didn’t stop until I closed them again, (B) the pressure in the back of my head when I was in an upright position was so painful as to become unbearable and I was in danger of passing out (but never have) and/or (C) I had no balance, ie was unable to stand up unassisted. Tinnitus, being lightheaded and/or having a stiff neck wouldn’t ever have kept me in bed. I suspect because you are so used to having the same symptoms you’ve forgotten to mention them and so it appears you are only telling half the story.

Already covered in this Topic: Rescue meds

Please use search and try to keep one Topic to one major question if at all possible.

My attack in May left me in a hospital bed for four days. I was given pizotifen, prochlorperazine, ibuprofen and IV-fluids. After coming home from hospital it took me another 6 days before I could leave my house, but I did not have to stay in bed.

My last attack a few weeks ago stopped me from leaving the house for 3 days, but I did not have to stay in bed. I was told to take prochlorperazine and aspirin if I have such an attack, but decided not to take anything and to just wait until it passes.

After these attacks it takes me about 2 weeks before I feel myself again. I am on pizotifen (1.5 mg per day).

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It’s the worry and anxiety of feeling this way. I cannot accept I’m having a flare up. My mind goes into over drive. I’m seeking some help with this. I’ve developed GAD. The in betweenness is great, I’ll take it, but the flare ups send me bonkers.

I think that’s often what must happen under the U.K. ‘Ignorance is Bliss’ syndrome. VM is not commonly understood by medics and is under diagnosed and/or ignored. People go on for years therefore untreated and the attacks become worse and worse and even more prolonged until it takes a huge mental toll. I never knew the true meaning of the word ‘Anxiety’ pre VM. I think that is one very good reason why Dr Teixido writes of instructing all his patients to get VM under control fast. Once people develop related mental issues everything becomes increasingly more challenging to sort out. Good on you for seeking further assistance with your GAD. I wish you all the best. The key now is to find acceptance.

On being bedridden

Likewise. I never suffered from anxiety at all save for when you expect to get it like presentations etc.

I keep on telling myself, it’s a flare up, rest, do not analyse it and they pass by.

It’s the anxiety that sends me round the twist; the worry it won’t go away, why it happened etc. Also worth pointing out the ven has been increased to help with anxiety. This maybe unsettling the VM alone.

Thanks for your kind words.

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That could be your answer currently at least. Blame it in the increase.

Have you tried the worry box system? Fix a time of each day when you sit and wallow, really allow yourself to work through those anxieties during a concentrated and time limited session. Then when anxiety starts up any other time insist it goes get in the box until tomorrow’s session is due. Works for some. Or there’s CBT. Or just get out in nature and walk. Try getting a grip on it yourself. Try and see if you can control it rather than it control you. I appreciate anxiety can creep up on you and sometimes cause instant dizziness. Not much one can do there but rely on the meds. If the anxiety is being caused by the condition controlling the one will stop the other. Fact. Look forward to it happening to you. Make it a mantra.

Great idea.
I have no anxiety about VM accept when I get an attack.
Then I know I’m in for a fortnight of hell where my symptoms will make me feel horrid. This is the only time I’m anxious about it. I constantly think will it end or am I stuck with it? I have no evidence of 20 years and several attacks a year never ending. All I have is the evidence it calms over a couple of weeks. I read stories of other sufferers attacks and relapses. But we are all individuals.
Dr Surenthian has the attacks less frequent and the in betweenness to a point where it doesn’t really bother me. I’m addressing the GAD and this can only help. In fact Dr S says an increase in venlafaxine may help the migraine as well. It’s down to me but with a young family it is tough as I feel as though I’m letting people down. My wife is 100 percent supportive and knows the pattern so so well. I’ve been under immense stress the last couple of years and this has caused the pattern to be more frequent. Monthly. However, I still want reassurance that it will end and I’ll return to my baseline. I’m week three of venlafaxine increasing from 225 to 300 mg. so far no side effects but this may have triggered this migraine. Even a Valium will not stop the constant thoughts mind. Crazy!

Mentality

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Ride it out pretty much and don’t let the anxiety win?
Thought crops up. Will it end. Ten myself it always does. Every time.

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Would be good to add more structure here in the form of a poll otherwise it’s not as useful to other people.