Quick spins while sleeping. What's going on?

Specific Illnesses & Conditions VM/MAV
1

I was recently diagnosed with MAV. I’m very early in treatment but so far okay.

I have dizziness, imbalance, tinnitus, ear fullness, ear pressure, sound sensitivity, motion sensitivity. Every symptom has been somewhat curtailed by Topa (evil in a pill) except one: I have these vertical spins at night which last between 5-10 seconds. It feels like I’m doing a quick, comforting loop on a roller coaster. The sensation is not alarming or unsettling. It’s kind of peaceful. Then again, it does wake me up. This started out of nowhere about four months ago and is happening more frequently (a few nights a week).

I don’t know whether a quick night spin like this is heard of. Then again, I can’t find anything on Google to save my life. I have even questioned whether what I am experiencing vertigo since it is so benign. Here’s the best description:

• It almost feels like a rush of blood to the head. Vertical spin. Movement and then the somersault.
• I have preempted it by changing positions.
• If I sleep sitting up it doesn’t happen.
• At first only happened while sleeping on left side but now has taken up on right and even happens when I’m on my back. So, if positional that position is on my back in any head position.

Does anyone else experience this? Does this sound like BPPV?

What vexes me most is I can’t pinpoint whether it makes my other symptoms worse afterward. Sometimes it happens with heightened symptoms. Sometimes it happens when symptoms are retreating. Now that I’m on a med (lowest dose, my body can’t handle this drug) and everything is tamped down, the quick night spin is the only unaffected symptom.

2

Hi Memofromturner

Yes I have these spins that wake me up, I call them my mini spins, you describe it very well, except I wouldn’t exactly call them comforting, I don’t like them at all, the following day is usually a rubbish day with all the after effects of a migraine.

If I sleep to the left this rarely happens it’s always on the right, if I sleep upright and tilt my head to the right it could still happen. My ENT consultant insists this is MAV.

I am also taking Topa 25mg, and it has helped tremendously with my rotational vertigo.

Thankfully I have not had any spins for a few weeks now ( fingers crossed).

You are very early in your treatment and hopefully everything will settle down soon.

Wishing you well.

Jackie

3

— Begin quote from “Jackie”

Hi Memofromturner

Yes I have these spins that wake me up, I call them my mini spins, you describe it very well, except I wouldn’t exactly call them comforting, I don’t like them at all, the following day is usually a rubbish day with all the after effects of a migraine.

If I sleep to the left this rarely happens it’s always on the right, if I sleep upright and tilt my head to the right it could still happen. My ENT consultant insists this is MAV.

I am also taking Topa 25mg, and it has helped tremendously with my rotational vertigo.

Thankfully I have not had any spins for a few weeks now ( fingers crossed).

You are very early in your treatment and hopefully everything will settle down soon.

Wishing you well.

Jackie

— End quote

Jackie, Thanks for your response. I can report back definitively that I feel worse after last night’s round of spins. Do you have vertigo other than the overnight spins? When you said Topa has helped with rotational vertigo I wasn’t sure if you meant more than these night events. I am also curious whether you have stayed at 25mg because you’ve determined the side effects aren’t worth the added padding of symptom relief or whether this was the right spot for you. I will need a lot of convincing to go any higher on this med. I am on day 20 and the side effects frighten me.

Chris

4

Chris
I called these ‘mini spins’ and had them while lying down or moving my head to different positions during the day. Topamax eventually controlled them. It was a long, slow process though. As you say, it’s a hard med to get used to. I eased into it gradually - upping by 12.5mg every two or three weeks and taking it at night only until I got up to 50mg then only taking 12.5mg in the morning for a while as I found it sedating. Even so, there were side effects - dizziness, headache, some word finding issues. I achieved 100mg after six months and three months later side effects had tapered off. I’m glad I stuck it out.

After three years of MAV hell Topamax has been a life saver for me! I was very wary about taking as some people had not had good experiences with it but having tried many meds I was pretty desperate so followed advice from others on the forum who had been successful! I hope it will work for you too.
Barb

5

Hello Chris

Sorry I didn’t make myself very clear, I was writing my response early hours in the morning, unable to sleep and tbe brain obviously not at the brightest.

The topa immediately helped with my rotational vertigo and rocking sensations, which surprised me as I expected it to take a lot longer than that, however the night spins rear their ugly head and seem to reappear when I am recovering from a virus, such as a cold or throat infection, stress and lack of sleep also adds to it.

I was on 25mg of Topa for three months and was happy to stay at that level because it did the job, however when the night spins crept back in I did increase to 37.5 with the intention of going up to 50mg. I stayed at 37.5 for about six weeks, but found that I was feeling like I wasn’t me and very forgetful (more so than usual). So I am back at 25mg. I will have to reevaluate the situation if things change and the symptoms get worse, but for now I am happy with the way things are.

Barb is right you have to take Topa slowly, it’s a long slow process, and yes theres side effects, but this med has worked wonders for many people on this forum and like Barb I was wary of this drug and my gp wanted me to start at 25mg for a week and then up to 50 after that, but after posting on here my worries, Barb gave me exactly the same advice as she has given you, to which I was extremely grateful. Barb I hope you are well.

I do hope this helps and that you are feeling well today,

Jackie

6

— Begin quote from “Barb”

Chris
I called these ‘mini spins’ and had them while lying down or moving my head to different positions during the day. Topamax eventually controlled them. It was a long, slow process though. As you say, it’s a hard med to get used to. I eased into it gradually - upping by 12.5mg every two or three weeks and taking it at night only until I got up to 50mg then only taking 12.5mg in the morning for a while as I found it sedating. Even so, there were side effects - dizziness, headache, some word finding issues. I achieved 100mg after six months and three months later side effects had tapered off. I’m glad I stuck it out.

After three years of MAV hell Topamax has been a life saver for me! I was very wary about taking as some people had not had good experiences with it but having tried many meds I was pretty desperate so followed advice from others on the forum who had been successful! I hope it will work for you too.
Barb

— End quote

Barb,

Congratulations on your success with Topamax. Stories like yours make me feel there is hope. You mention you tried many meds ahead of Topamax. Topa is my first stop. The vestibular doc who diagnosed me with MAV and my neurologist (who came to the same conclusion at about the same time) both chose Topa independently of each other. I took this as a great sign. Then I read about the med. I’m sure it’s why you stayed away for as long as you did. Having gone through the experience of trying other migraine meds out first, would you advise sticking it out with Topamax? There’s a strong part of me that wants to back this up and go to one of the other drugs that the MAV guru doctors prefer first. Not because Topamax is a drug of last resort, but because just getting up to 25 mg was such a high hurdle for me. Some of the side effects have been wild. Nothing has lingered very long but I have a rash that comes and goes. I’ve had a few hand tremors. I’ve had extreme fatigue. I definitely had a day very much like what Jackie mentioned above “feeling like I wasn’t me”. If you were to say oh yeah, you just ride this out on a slow titration, and maybe you’re 2% mentally slower at the end, I could hunker down and prepare for the long fight. Right now, it seems a little crazy to go all in having tried nothing else first. Sorry, that’s a lot. I recognize we are all different and our journeys are ultimately our own, alone. I do appreciate any advice you have. You’ve walked this road and it’s invaluable to someone like me who’s coming along the same path.

Chris

7

— Begin quote from “Jackie”

Hello Chris

Sorry I didn’t make myself very clear, I was writing my response early hours in the morning, unable to sleep and tbe brain obviously not at the brightest.

The topa immediately helped with my rotational vertigo and rocking sensations, which surprised me as I expected it to take a lot longer than that, however the night spins rear their ugly head and seem to reappear when I am recovering from a virus, such as a cold or throat infection, stress and lack of sleep also adds to it.

I was on 25mg of Topa for three months and was happy to stay at that level because it did the job, however when the night spins crept back in I did increase to 37.5 with the intention of going up to 50mg. I stayed at 37.5 for about six weeks, but found that I was feeling like I wasn’t me and very forgetful (more so than usual). So I am back at 25mg. I will have to reevaluate the situation if things change and the symptoms get worse, but for now I am happy with the way things are.

Barb is right you have to take Topa slowly, it’s a long slow process, and yes theres side effects, but this med has worked wonders for many people on this forum and like Barb I was wary of this drug and my gp wanted me to start at 25mg for a week and then up to 50 after that, but after posting on here my worries, Barb gave me exactly the same advice as she has given you, to which I was extremely grateful. Barb I hope you are well.

I do hope this helps and that you are feeling well today,

Jackie

— End quote

Jackie,

I feel a bit like a cat who’s gotten itself up a tree at 25 mg. I’m unprepared to go on for similar reasons as you. And I’m not ready to go off Topa because I am feeling some positive effects. What the med seems to help the most is I’m off these slow 5-10 day cycles of symptoms that build to a really bad day with an odd euphoria attached. The night spins are happening too often, however, and that has me concerned since the ear sensitivity: sound and motion is definitely effected by the vertigo. And of course there’s the feeling crummy after the night spin as you mentioned. I’ve never experienced the rocking vertigo but I’ve heard about it and it sounds awful. I’m glad to hear you’ve kicked that one.

You and Barb are half a world away from me (I’m in Northern California), and half a world away from each other, but I appreciate your solidarity.

Chris

8

Chris
It’s easy to be wise after the event! Looking back I spent months going from specialist to specialist without getting a diagnosis or proper treatment and getting worse & worse! I knew nothing about MAV or Vestibular Migraine or any preventative treatments. My GP was convinced I had Menieres but all tests were clear. He had never heard of Migraine Associated Vertigo. Eventually by finding this forum and finding out about preventative meds I asked my GP for a script for Nortriptyline which began to help. Then I decided to fly to Sydney to see a recommended MAV neurologist who has helped other forum members.

I think you are fortunate to have two good specialists. Topamax has been proven a ‘front-line’ med to help Vestibular Migraine. Each person is different and every doc would have their reasons for prescribing a particular med for their patient.

Because I had chronic daily migraine headaches plus the vertigo my neurologist decided to keep me on a tricyclic anti depressant (Prothiaden) and then further down the track added Topamax as my balance issues still weren’t under control.
Eventually, my headaches went away and I came off the tricyclic. Topamax has been my mainstay in controlling the dizziness, mini spins, falling to the right, visual vertigo, etc. Just recently I’ve added Lexapro which has just given me that final boost in controlling the visual vertigo.

So, in answer to your question - I think everyone’s journey is different. You may be fortunate in having found good doctors, the right medication, etc straight away. It has been known to happen to others on this forum. It can save months/years of frustration trialling medication(s) so putting up with side effect could well be worth while. If you come off Topamax and trial other meds which don’t give good results you will always wonder whether you should have given Topa a really good go in the first place! However, that said I feel the final call should be your Neurologist’s - explain about the increased night spins & whether he feels increasing the Topa dose will stop them.
Barb