Can't even go over a speed bump or my head feels like it could explode!

I’ve had migraines and headaches since I was a child (I’m now 35). 3 years ago I kept almost fainting and vomiting for 6 months. That improved and then this exploding stabbing pain started in my head on the left side.My head hurts all the time with either a migraine or this exploding pain followed by my tongue going numb, feeling faint and like “I’m going to die”. I can’t exercise, bend over, sleep flat or take deep breaths without my head hurting. If my chair is bumped my head feels like it could explode. I have to get out of the car if there is a speed bump and walk over it because it sets off such debilitataing pain. Any type of vibration from that or a door slamming etc, and strong smells completely wreck me. Chiari has been ruled out, and no pathology on MRI or CT. I just had ultrasound done and the vagus nerve is supposed to measure 1.8 and mine are 1.0, and the internal jugular vein and carotid are also being compressed bilaterally. C1 is also applying pressure to those along with the styloid processes (measured 3.5 and 3.7 cm)
I just met with Dr. Hausser at Caring Medical in Florida and am starting cervical prolotherapy and then cervical curve correction. I am trying to decide if I should also get surgery, and if so internal or external? The styloids are 3.5 and 3.7 causing pressure on the internal jugular vein, carotid and degeneration of vagus nerve. I was most interested in the DaVinci robotic surgery, and would appreciate feedback of any kind regarding the stabbing pain or recommended surgeons, etc. I live in Missouri, but am open to any Dr in the United States and will travel. Has anyone else had the exploding head pain from ES? I have done all diet, lifestyle, alternative care, medications and no relief. My goal is is like my name freedom to not be a prisoner in my own head anymore. I want the least side effect surgery because I don’t want more pain in my head from complications post op.

They look nasty styloid processes! Your symptoms sound pretty grim, I feel for you- I had bilateral jugular vein compression & the symptoms were horrible, yours sound worse…
We have had members who have tried prolotherapy but it doesn’t usually help- you can search for that in the past discussions. Interesting that your CT report didn’t mention ES as you can clearly see the styloids & the compression…
We’ve only had a couple of members who’ve had the robotic surgery, they had good results but it’s not been used often.
Unfortunately there is no cure for ES except for surgery. You would be better having external surgery, as this gives the surgeon much better visualisation of the structures of the neck, & usually they can remove more of the styloid process. If you are really happy to travel anywhere, Dr Hepworth is very experienced with vascular ES, but does get very busy, so there could be a wait. (He’s helped many members with complicated situations and has prescribed plavix while they’ve waited for testing whihc can help). Dr Samji in CA is a very experienced surgeon, as is Dr Milligan in Arizona. As you’ve travelled to Florida, Dr Magnuson & Dr Fernandez have done surgeries, and Dr Hackman in North Carolina has done lots.
Here’s a link to the doctors list for more info:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
As for the sharp pains, it sounds like it could be nerve pain, which can be helped with medications, either anti- convulsants like Gabapentin, Carbamazepine or anti-depressants like Amitriptyline, in low doses.
I hope this helps, and hope that you can get some treatment soon, sending you a hug :hugs:

1 Like

Definitely nasty looking styloids!! They’re thick & somewhat curved both of which can cause them to come into contact w/ more of the soft tissues in the area. Length often has little to do w/ what the styloids are affecting. It’s often more the thickness, angle, how curved or twisted they are that causes the problems. With how terrible your symptoms sound, I expect that getting the styloids removed will give you amazing relief over time. When nerves have been irritated for awhile, it takes time for them to recover after surgery.

I’m completely in Jules camp about your need for external surgery with all the vascular & nerve issues you have. The Da Vinci robotic approach is intraoral so none of the vascular or nerve tissues can be seen during surgery. With external surgery the doctor can actually see where things are, & that helps reduce further damage & can prevent causing new damage during surgery.

I totally agree with everyone else. Dr. Hepworth is amazing. It may be a long wait, but definitely worth it. My daughter has experienced all the symptoms you have described, and it is agonizing. Dr. Hepworth is the most through and caring doctor I have had the pleasure of knowing (and there have been hundreds, between myself and my children’s experience). Each case is so unique, but he explains all the details. I highly recommend getting on his waiting list!