Thank you for the PSH link. Very interesting & the symptoms description totally fits what you & some of our other members have noted for yourselves.
Cushings reflex is less exact especially in light of when it’s noted to occur (terminal stages of acute head/brain injury) but it’s interesting none the less.
The shaking isn’t always caused by vascular ES @zeagle. It seems even the non-vascular form of ES can cause it as well. I had significant BP drops when I exercised so problems at the other end of the bp spectrum. These would cause my heart to race which would make me feel very dizzy/light-headed. As far as I know, I didn’t have VES, and these symptoms resolved once my right styloid was removed. The vagus nerve can also wreak havoc w/ heart rate & bp.
Wow, I wonder if that gives me something more to think about now? Do you think this is related to my situation or do you think the stomach storms are separate? I had 20 episodes when this all started back in 2020 through 2021 with my heart racing in addition to the blood pressure spikes. Thankfully to God I have not had any real issue with the heart rate spikes since then. It’s very difficult to get through all of this when the blood pressure is in an extreme state and the heart is racing over a hundred beats per minute so I don’t want to ever return to that - that’s for sure.
Wendy, do you know if Dr Constantino would be looking at that as a consideration or if he would be addressing that at all? I wonder if he has ever had a patient with the dystonic storms?
I don’t know if Dr. C has had any patients w/ dystonic storms or with the symptoms you have but he is a very experienced surgeon so I expect he’s capable of dealing with the challenge your symptoms will present to him. I expect he’ll want to hear about your symptoms during your consult.
I also have these “fits”. I get dizzy, then my stomach starts to hurt. I get nauseous and then uncontrolable yawning and yawns that i get stuck in and my jaw opens so wide it hurts… after that i get really cold and start to shake and that’s when i know it’s almost over… then i get really sleepy for about an hour and usually i feel better after that. It’s the craziest thing
This seems quite similar to how my Postural orthostatic tachycardia syndrome (POTS) attacks are when induced naturally. Unnatural ways, like giving blood or lidocaine (because it contains epinephrine) will usually have those same symptoms intensified and I will pass out and possibly have a seizure before I feel normal again. Switching to carbocaine for local anesthetics was needed for me as it didn’t contain epinephrine. Once I knew what POTS was, I had my GP order a tilt table test and it came back positive for POTS. Trying to keep your blood levels high with liquid IV helps, as well as understanding what triggers your POTS attacks. Its still something I hope will resolve with my ES treatment as it is one of my worse symptoms. The tilt table test is designed to make you have POTS attack, luckily I just felt nasty/dizzy/nauseous/light headed during mine.
@Swent39 - That sounds AWFUL! I’m sorry you’re having those symptoms. One bit of advice I can offer is, if you’re able when the yawning fits start, press the tip of your tongue to the roof of your mouth & make it stay there as you yawn. That helps keep you from opening your mouth so wide & will help protect your jaw joint. My jaw used to lock when I yawned & I’d have to smack it on one side to get the other to dislodge. Since my problems didn’t have the same cause as yours, I was able to get it to resolve by getting braces on my teeth to realign my bite.
@BirdsOfSore has also offered you more broad spectrum advice that could help you overall.