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Freezing spells


#21

Hi Sweet_Cakes!

My mom has been having similar episodes to what you described above! We haven’t found anyone else that has the “freezing episodes” 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 can’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. It’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.) She’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 didn’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 she’s worried about the side effects. Have you tried Topomax? Are there any meds you’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 … 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!


#22

I am so sorry to read your Mum’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 it’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 doesn’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.


#23

So sorry to hear yr Mom. That’s extremely distressing for the whole family. It’s awful feeling powerless to help.

I am not a medic. I’m here because I’ve had MAV for many years. I’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 ‘freezing’. 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 it’s common, this ‘freezing’ in Parkinsons Disease. Quite often apparently they ‘freeze’ 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 ‘rescue’ 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.


#24

My heart goes out to your Mom. I wouldn’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. That’s when my "seizure"symptoms started. Stopped the Topamax, but the problems didn’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 “sleep attacks”. Starting to wonder if it is possible mild narcolepsy.


#25

You’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. I’ll keep you posted on her progress. It seems like you and my mom have a very similar diagnosis, we would love your help!