I have not been on this site often because although I have ES, I have been told that my symptoms are due to other problems. This past week I had a VEMT test because of dizziness. I found it difficult to turn my head as far as needed, but I pushed myself to the limit. About half through I started having an intense headache. It has been 4 days and it is not getting better. I feel like the top of my head is going to explode and it is almost numb to the touch. It almost feels like I have a very tight rubber band cutting off circulation around the top of my ear level. Has anyone else had this sensation due to ES?
Not that I’ve read, but your headache could certainly be a symptom of vascular ES. There have been a number of people who’ve suffered w/ headaches from ES that were so debilitating they went to the ER for treatment. These mostly quit after ES surgery.
Thank you, I do have occipital neuralgia, they say it is not related to ES, but this headache came on during the test so I have worried that it may have caused something to get pinched or something due to holding my head so far over. I wonder if the styloid is pressing on a vein but I don’t even know what Dr to ask.
It could be that a nerve has been irritated or compressed, giving the numbness feeling. Vascular ES can cause dizziness and headaches, and if the jugular veins are compressed, then that can cause the feeling of pressure in your head, and weird feelings like that you’re wearing a hat. A CT with contrast would show what’s going on with the blood vessels in your neck, and if the styloid processes or calcified ligaments are compressing them.
It’s frustrating, and I can understand that doctors want to rule out other conditions, but those symptoms are in line with ES… you could try looking through the ES Info section in the Newbies Guide where the symptoms are explained, and print off info which is relevant to you (there are studies mentioned in there which might help), then take that with you to any appts. Members usually try an ENT doctor for a referral, or otherwise an otalaryngologist, or neurovascualr surgeon. In the doctors info section there’s a list of doctors familiar with ES, so maybe you could see if there’s someone not too far from you.
Incidentally, I had occipital neuralgia, but had physio for my neck and that really helped. I used to get regular pain, but it’s only happened rarely since having exercises to do at home. Don’t know what treatments you’ve tried? There’s info in the ES INfo treatments section about nerve pain medications as well.
I had headaches where I felt like my head was under pressure and had to take my sunhat off because it felt like it was getting tight, then continued to have the same sensation. My face turned red [like heat stroke] when this occurred and has stopped so far since my surgeries [1 & 5 months ago].
Thank you Jules. I have printed off a few things from the newbies guide to talk to my Drs about. Because of the holiday today I have been unable to ask any of them about the new pain, but I have to say it is calming down so my hope is that a nerve may have just been irritated and not compressed.
As for the Occipital neuralgia, I have taken a few things, and have been doing vestibular therapy for over 2 years. I even have pain shots every 3 months but nothing stops that pain, other than Advil, 12 a day, more when shots are wearing off. After reading many things last night, I wonder if they are treating me for the wrong kind of headache so that is another question.
As you said, it is frustrating that Drs want to rule out other conditions, but in this case, it was not to rule out another condition, it was follow up because I did for sure have Superior Canal Dehisence Syndrome, I had surgery that has improved many of my symptoms caused from it and this was just to make sure my other side which we know is thin has not broken through.
(I also have a renal disease that causes many of the same symptoms so I am always a puzzle to the doctors, not to mention I am diabetic!)
Thank you for all of your help. Although my past problems were from other things, it may be time to pay more attention to ES now!
I bet you had to take off the hat, I can’t imagine putting one on at this point. All I can think of is it feels like a rubber band on my head! It is calmer today though but still faintly there. I can’t wait to be able to talk to a doctor tomorrow, even though getting better, I want to know its okay or not.
Good luck at the doctor tomorrow. I was wondering If your face is red? Do you know if your blood pressure is up? They told me for years it was just menopause and hot flashes.
I don’t believe it is blood pressure, it was fine the other day when I had the Vemp. The pain for sure started during that test. I know I have ES on both sides, but have been told in the past it was not causing any problems. Worried that holding my neck so far over caused a problem. I will let you know if Dr has any answers, thank you for thinking of me!
I was diagnosed and had successfull surgery for my ES. I had sever pain in the top of my head, in the trigeminal nerve around my teeth and lost the a ability to turn my neck. After surgery I was diagnosed with TMJ and still go to therapy weekly to relax the muscles in my neck. Sometime our body compensates and creates other issues in adjoining areas. I manage my pain now but I will never be painfree. When my head pain starts I take a migraine type med, watch my posture and go to therapy.
Ann, I also have TMJ, one night while sitting talking with my family, I got a terrible pain in my jaw and could not open my mouth. My jaw disc just “broke”. I had surgery for it and it was at that time that the ES was found in the scans. I have also had a sinus tumor surgically removed and SCDS surgery so it just seems my head loves medical attention!
Yes, head and ear pain is one of the symptoms I suffer most from.
My ears don’t always hurt, but the back of my head does. I feel like doctors just really have no idea what ES is all about