New to site and recently diagnosed with vestibular migraine. Symptoms have now evolved from dizzy/vibrating to include freezing spells and speech problems. Haven’t found anywhere through my research anything about these spells. I just get stuck whatever I’m doing. Unable to move, blink, talk and sometimes my breathing stops too. Is there anyone out there who has had these freezing/staring spells or knows anything about them?
Have had eeg, MRI and CT. All normal they say except a 11mmx15mm pineal cyst. Follow up MRI for that tomorrow.
I’m assuming you’ve had Parkinson’s Disease ruled-out as well as absence seizures?
Also, did the doctor seem to think the pineal cyst might be to blame?
“The National Organization for Rare Disorders says that pineal cysts larger than 0.50 cm are “rare findings” and are possibly symptomatic. If narrowing of the cerebral aqueduct occurs, many neurological symptoms may exist, including headaches, vertigo, nausea, eye sensitivity, and ataxia. Continued monitoring of the cyst might be recommended to monitor its growth, and surgery may be necessary.”
Thanks KennedyLane for the info, but no the Dr.s don.t think it.s d/t the cyst. I think it is but the common belief among Dr.s is pineal cysts are not symptomatic unless there is hydrocephalus or upward gaze paralysis. Despite the cause of the migraine I’m more curious of the symptom. Ihad an eeg and they ruled out seizures. So still looking for anyone who has had this as a migraine symptom or know of anyone who has.
Did they do an EEG during one of these spells or immediately after? For many people with seizures, EEGs are normal in between seizures. Are you aware that this is happening to you or did someone else tell you? I have confusion and loss of speech, sometimes it makes me kind of just stop and stare since I can’t totally figure out what is going on around me, but to stop breathing sounds really scary and I’m not sure I have ever heard of that associated with migraine. I am far from an expert though, so maybe it is a symptom of certain types of migraine.
Sorry it took so long to reply, computer problems. No the EEG was not done anywhere near one of these episodes. During the episodes I am completely aware (that is since the dizziness and vibrating have been under control). I can hear, completely understand and feel during. My friend was present for the last one and she was trying to make me laugh. She said something funny during the episode, I just stood there and stared, eyes watering because they don’t blink. After I came out of it I started laughing. While talking to my son (I talk with my hands) I got stuck in mid word and hand up in the air for about 30 sec to a minute. I’m not sure if he wanted to be scared or laugh at me.
On another note the follow up MRI for pineal cyst showed no changes.
Hey this could be catatonia,(not sure if it may be another symptom of migraine) there are lots of reasons why catatonia occurs. Sometimes it can be a reaction to some drugs or extreme lack of sleep but there are a whole host of reasons and different types of catatonia. I’m only guessing and it might not be this but I suppose it’s worth looking in to…
Thanks Julia333. Never heard of that before. Definitely worth looking into.
I have a lot of experience with absences/absent seizures. My ex boyfriend who I lived with for 3 years is epileptic, suffering from both absences and full tonic clonic seizures.
Although you would expect to see some kind of abnormal EEG result in an absent seizure patient, I think it could still show clear. As it can be quite hard to run an EEG when you feel one coming on or have one, I think they can ask you to breath deeply and quickly i.e hyperventilate to bring one on.
I’m not a neurologist but I would wonder whether these episodes were more epileptic in nature given the breathing cessation. Having said that, migraine can produce weird and wonderful symptoms. Look at the work of Oliver Saks. Moreover though, I urge you to look at some of Dr Nicholas Silver’s presentations which you will find on this forum. He says that migraine can affect the autonomic system. ( Everyday examples include breathing, swallowing, and sexual arousal, and in some cases functions such as heart rate.) So although perhaps rare, it seems that migraine could indeed be the factor for you with the breathing.
Have you sought a 1st and 2nd opinion of a neurologist?
Missmoss83, I have thought about seizures. Simple partial seizures to be specific because I am aware and conscious the whole time. I want to press that issue with my neurologists next visit (2 months) or next episode.
Unfortunately my insurance won"t pay for a second opinion. They say I have already had 3; primary care physician-1, ENT-2 and neurologist-3. Yet I didn’t have a diagnosis until the neurologist.
Thanks for some insight and the reading referrals. I hope your boyfriends seizures are under control.
Update…Freezing spells were non-epileptic or overload seizures. My non stop migraine symptoms were too much for my body to handle. Instead of staying on short/long term disability until I was well. I forced myself to try and function as a wife, mother, house keeper, financial manager and work a full time job even though I could barely stand upright.That on top of feeling like a failure at all the above. My body couldn’t handle any more stress. So everything a normal stressor occurred, I would have a seizure. These stressor would be things like eating, body temperature fluxuations, hormone fluxuations and certain sounds (d/t sound sensitivity from migraine). Went through some seizure counseling that helped along with the non stop vertigo subsiding finally! (I think the acetazolamide helped with that). It was a long 4 years. Still fave frequent migraines. Nausea, vomiting, eye pain, sinus problems, general ill feeling and major brain fog. But it usually only lasts a day at a time. Nowhere near what I was going through. I now can function normally. Just started Petodolex for better migraine control. Since none of the regular medications have helped. To early to tell, but it seems like they are less in intensity already. Here’s to hoping they go away all together. Let me know if any of you have tried Petodolex.(Butterburr)
Very interesting thread. Would be interested to know how things have been with it since last August. Anymore freezes? Saw the same thing happen for the first time last night with a relative. Just froze for up to 40 seconds. Has also been diagnosed with Vestibular Migraine like you.
Glad they found what it was…
I have not experienced any more freezing episodes. No longer on Petodolex. Tried Amitriptyline for better migraine control due to Jan-April migraines increase greatly. Could not stay on it because it caused vertigo and some of the precursors to my freezing spells. Did not want to go backwards. Now on depakote. Seems to help some for the migraines. More than any med I’ve tried, but I feel dull. Not experiencing full emotion. No vertigo as of yet. Still have the pineal cyst in my head 12mmx15mm. Still think it’s the cause of most of my symptoms. Let me know if you have any specific questions.
Has this been going on long with your relative? To be diagnosed I had to be admitted to the hospital and wear EEG equipment on my head and be monitored 24/7 with video surveillance. They would then try to induce seizures. It would be interesting to hear your relatives account of what it’s like when this happens. Hope all is well.
What precursors to your freezing spells did amitriptyline cause?
It was the first freezing spell on Saturday. They cannot remember anything of what happened at the time but there was a migraine with a pain score of 9/10 leading up to it. Afterwards it was 9.5/10.
Started having symptoms of dizziness, and extreme tiredness. So extreme my eyes will not, and I mean will not stay open. I have to pull off the side of the road if driving or just sit for awhile. Then it passes in about 15 minutes to 1/2 hour.
I’m not an expert, but not remembering what happened is more indicative of a regular seizure or something else going on. Not overload seizures. Hopefully he’s getting it checked out.
Did the extreme tiredness include lots of yawning as well? Comes on without any warning.
The ‘something else’ is delirium. Not a good combination to have.