Freezing spells

Hi Sweet_Cakes!

My mom has been having similar episodes to what you described above! We havenā€™t found anyone else that has the ā€œfreezing episodesā€ with the Vestibular Migraines and her diagnosis took over a year to figure out. Would love any help or advice from you!

My moms symptoms start off with being dizzy, nauseous, really bad headaches, feels like someone is choking her. It then turns into spinning out of control, hard to catch her breath, loss of speech, and she canā€™t move her body. Then her eyes lock on something and she freezes. She has all the same symptoms that you described, she can hear everything and is aware that she is frozen, but she cant move. Itā€™s like a cationic state with the waxy limbs. The only thing that gets her out of her episodes is 1mg of Ativan (she had episodes that have lasted for 7 hours.) Sheā€™s been dealing with these episodes since Feb 2018 and they just keep getting worse. Shes been having them everyday lately, or at least 1-2 a week. She was tested for everything you could possible get tested for, and it all came back normal. So the doctors told her she had FND (functional neurological disorder) and shes been going to Cognitive Behavioral Therapy, acupuncture, and massages to try and help with all her symptoms. Not a single doctor could tell us why she was freezing!! so frustrating. SO, a few weeks ago she finally had her family doctor schedule her with a ENT Neurologist they ended up doing a 3 hour balance test on her. This is when they found out she had Vestibular Migraines and also Vertigo in her right ear, which all the doctors kept telling her she didnā€™t have.

We now are in the process of slowing getting her off the Ativan, because its the only thing that has helped her from getting the episodes, but really its just masking the symptoms and not helping her get better. And the doctors are having her do Vestibular Migraine Physical Therapy, which she just started this week. She also was prescribed Topomax to treat the migraines, but sheā€™s worried about the side effects. Have you tried Topomax? Are there any meds youā€™ve tried that have worked the best? Any help with this would be greatly appreciated! We are looking into Cleveland Clinic that specializes in Vestibular Migraines, she has an appointment scheduled at the end of August. Has anyone had any treatment there? Any success?

Also, i should add to all of this ā€¦ my mom was also diagnosed with TD (Tardive Dyskinesia) in Feb from going off her medicine Abilify. So, that on top of all of this causes her symptoms to be even worse. TD and VM all cause a lot of anxiety, so they have her on Busebar which has really been helping!

Thank you to anyone who reads this! We would love some help!

I am so sorry to read your Mumā€™s story, that is tough. The thing I can help with is the topamax/topiramate as it was prescribed for me 18 months ago and changed my life for the better. I take a very small dose, 12.5mg twice a day with 10mg nortriptyline once a day because that works for me. The neurologist suggested titrating up to 70mg twice a day but I saw little point in doing so when the small dose worked itā€™s magic without side effects. Please tell your Mum to start topamax slowly, not to increase the dose unless absolutely necessary and to give it a chance. It doesnā€™t agree with everyone I know but when it works it is amazing.

I wish you both all the very best and hope topamax really helps.

So sorry to hear yr Mom. Thatā€™s extremely distressing for the whole family. Itā€™s awful feeling powerless to help.

I am not a medic. Iā€™m here because Iā€™ve had MAV for many years. Iā€™ve read and researched LOTS. About MAV and lots of related conditions. Without going into too much personal detail we thought there was a Movement Disorder inherent in our family. My only sibling, a brother was diagnosed with it. I eventually saw a neuro-otologist to see if I too had it and whilst I was with him he diagnosed my MAV. Because of this connection I did read up alot on movement disorders so as soon as I saw your word ā€˜freezingā€™. Parkinsons Disease came into my mind. Read up on it a bit. May not be the same thing as you describe your Mom as having at all but itā€™s common, this ā€˜freezingā€™ in Parkinsons Disease. Quite often apparently they ā€˜freezeā€™ in bed and even people mildly affected and living independently still, ie not badly affected, get and the emergency services have had to break in to ā€˜rescueā€™ them. If the symptoms seem to fit it might be worth taking her to a neuro-otologist with specialises in Movement Disorders. Hope you soon get it identified.

My heart goes out to your Mom. I wouldnā€™t wish what I went through on anyone. Part of my long road started with Dr. Cherian a Neuro/Ent specialist at Cleveland clinic. I was sent to a Seizure specialist there after that. Where they eventually they had me do an inpatient 3 day EMG while being video taped- which is how I got the diagnosis non-epileptic seizures. Migraine symptoms were too overwhelming. I stayed in town a couple of more weeks and went to a Seizure psychologist they recommended at the hospital. It helped. I have been on Topamax, but it was an ENT doc who ordered it(to help until I could see s neurologist), but he started me at 100mg right away. Your suppose to start low and go slow. Needless to say it made things soo much worse. Thatā€™s when my "seizure"symptoms started. Stopped the Topamax, but the problems didnā€™t. Acetazolomide i think is what finally took the non-stop vertigo away. I was on med after med, but nothing worked for most of my symptoms. I get sphenopalatine ganglion blocks now and that is the only thing that has helped my migraine symptoms. No needles involved, yay! I still get ā€œsleep attacksā€. Starting to wonder if it is possible mild narcolepsy.

Youā€™ve been through a lot too! So, what was our final diagnosis? Non-epileptic seizures, Vestibular Migraines, and Vertigo? My mom has an appointment to see Dr. Cherian at the Cleveland clinic as well.

How are you doing now? Do you still freeze? What do your sleep attacks consist of?

My mom is dizzy all the time, we are hoping the Topamax starts to work over the next couple weeks. Iā€™ll keep you posted on her progress. It seems like you and my mom have a very similar diagnosis, we would love your help!

Hi!
Reviving this thread because I have had this issue increasingly this month.

I would walk and suddenly stop and stare in the void, my boyfriend told me. To me, it feels like an out of body experience where I cannot move nor answer for a few minutes. Prior to freezing, I have my neck and legs going into tremor. After the freezing spell, I am utterly tired as if I had run a marathon.

I have no pain during or after the episode.

Never had it before January and after the first time it happened I didnā€™t want to draw conclusions.

The weird thing is ā€¦ If I take a benzo in the morning no freezing spell happens during the day.

Soā€¦ Iā€™ll talk about it with my Neuro next week. I had an EEG done but when I woke up at 2:00 at night (the strap around my head to maintain the electrodes was too painful) , dumb me took a benzo to go back to sleep. Didnā€™t know that it affected EEG, duh ^^

Iā€™ll keep you guys updated.

Marianne

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That sounds like an absence seizure.

So weird ā€¦ it happens when there is a lot of sun or when I change light settings or things like that.

I donā€™t knowā€¦ we shall see what the neuro say !

Xxx

Marianne

Maybe itā€™s just an overload of stimulus and your brain needs a moment to sort it out.

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Your description reminds me of the fight/flight/freeze mechanism. A sort of deer in headlights followed by a rush of adrenaline then the crash that comes after.

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:smiley: something like that ! Poor deers & rabbits ā€¦

To give an example that happened when I entered a shop and I could feel straight away that something was off.
I try to force myself to go shopping despite the visual stuff going on with me, light sensitivity etc.

I stopped and froze for I donā€™t know how long, and I recall coming back to my spirits with a man (doing his shopping) looking at me like what is she doing. turns out I was standing in the way to the manā€™s basket so I was blocking him.

Hmmmā€¦ better to joke about it because it really is unpleasant and tiring !

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Benzos calm the nervous system. So it makes perfect sense why they work to keep the freezing spells away if they were due to an overloaded nervous system. Sometimes our nervous system gets stuck in an abnormal behavior like sustained over activity. Therapy is useful in decreasing symptoms. But definitely see your physician. He or she may want to do testing or send you to a specialist to check everything out.

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Thank you :slight_smile: it makes perfect sense about the Benzo.
Yes, I am following a therapy and I find it helpful to cope with everything.

May I ask, I could read that your absences disappeared, do you think the meds somehow helped in that (Depakote?) or was it more the therapy or a combination of both.

:two_hearts::two_hearts::two_hearts::two_hearts:
Marianne

They were diagnosed as non-epileptic seizures. Seeing the seizure therapist helped initially. No meds really helped, but I didnā€™t take any benzos either. They slowly disappeared. I went 2-3 years without any, then out of the blue they started happening again, but only lasting for a minute give or take. Seems to happen around my migraines. So I should probably find a seizure therapist around where I live. Depakote didnā€™t really do much for me. Not enough to keep on it anyway. Caused me to gain 35ibs.

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Result of overstimulation Iā€™d guess then Brain just puts it all on temporary hold. Sot of pressed the DVD Pause button. Initially I could relate to your experience but once change of light was mentioned I think I have memories of similar happening to me couple of times when very photophobia I decided to go walk outside in the garden in bright sunshine. Everything just suddenly stopped. Apparently, as I have just written much earlier on this thread, it can be a common occurrence with Parkinson sufferers too. Not saying you have Parkinsonā€™s, donā€™t think that please, just suppose overstimulation could apply to both conditions.

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Thanks so much for coming back to update us all. Very much appreciated.

Hi everyone :slight_smile:

My EEG was normal ! Good news. I guess what I am experiencing is similar to the sensory overload that was discussed previously by @Sweet_Cakes :slight_smile:

Have a nice evening,

Marianne

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