Blame hormones and also trying not to be “that hypochondriac” because you just know they will bring it up. “Maybe it’s hormones, your depressed, you have acid reflux, you have anxiety, it’s all in your head…” I don’t have that feeling all the time but it does seem to kick up with activity or after eating. I’m not sure why after eating but based on what I remember about anatomy, a lot of blood goes to your GI system during digestion. It’s strange.
Oooh that’s interesting that it effects you after eating! I haven’t been paying attention to that, so I’m totally going to start and see if it’s also a factor for me.
And I know. The neurologist who put me on anxiety meds took me off the anti-dizziness meds (which were helping) another prescriber put me on, and it made everything 10 times worse. This was during Covid so he didn’t even see me in the office, it was like a 5 minute tele-visit and just said I was ‘over-reacting’ and that I just had too much ‘anxiety’. I wanted to believe him so bad, because that would have been great haha. I’m sorry to hear you’ve also experienced a ton of this… Having to be your own advocate is so hard. But that’s why we keep fighting!
Hi @JustBreathe, may I ask what is reflexive valsalva and what do you experience when this happens? I have what I call full body contractions with involuntary valsalva that happens during the night and upon waking in the morning. I haven’t received any answers to why this is happening and wondered if ES could somehow be contributing. I was just diagnosed with ES. Thank you!
HI! My use of the term valsalva reflex is not a formal medical term, just best way I could describe what I experienced. Further discussion with my surgeon brought up “baroreflex” which may be more accurate but still theoretical. I can say this was 80% resolved for me after bilateral styloidectomy and IJV angioplasty! I do believe it was largely related to the vascular stenosis. It would appear that the residual is related to my latest diagnosis of CCI/AAI that is influencing my vertebral artery. I hope this is helpful! There is a reason for your reaction, don’t give up.
Hi @JustBreathe, thank you for your response and encouragement! That’s wonderful it is 80% resolved for you after surgery!! That gives me some hope. My jugulars are compressed and I have CCI/AAI too. My brain MRI also shows signs of SIH and it’s so hard to figure out what comes from what and what to treat first. Thanks again for taking the time to reply, I am wishing you the best!
Yes, it is a tricky road to navigate with the order of operation. There is high speculation that CCI/AAI negatively influences CSF flow dynamics in relation to intracranial pressures, as does vES. Sounds like you are on the right track. Take good care and lmk if there is anything else I can help with.
@ButterflyWishes - I’m sorry for your situation & especially the length of time you’ve had symptoms. So many of our members w/ IJV compression have other complicated health challenges. It is difficult to know where to start with treatment, but most of our members who have VES decide that styloid removal comes first as it’s the best chance for the IJVs to re-open. Many have realized great symptoms reduction once their IJVs are flowing again, as @JustBreathe mentioned.
ES surgery alone doesn’t always work so angioplasty or stenting (if angioplasty doesn’t help) are the next possible steps.
Dr. Hepworth in Denver is the most experienced VES surgeon on our list though there is a doctor closer to you who has recently been surgically trained by Dr. Hepworth. His name is Dr. Fargen. We haven’t put his name on our doctors list yet because he’s still very new to ES surgery, but I expect he’ll be added soon.
@JustBreathe thank you so much for your support! Hopefully treating VES will provide some relief in the CSF flow department too.
@Isaiah_40_31 thank you for your kind words. You and @Justbreathe have helped clarify a lot already. It’s encouraging to hear about others improvements and similarities. I have put a call into Dr. Hepworths office and I look forward to learning about Dr. Fargen as well. Thank you so much!
I have been going through the same thing like brain fog and I actually am blind in my right eye just woke up one day after having severe pain and pressure in my head and I lost my vision. They said it was a retinal detachment. I have problems with having irregular heartbeat and so many things that everyone is talking about and the ear pressure and the pain. Like it’s like my face hurts so much at times I just pass out because of the pain. I can’t seems to sleep comfortably because my neck hurts really bad when I turn to either side and I definitely can’t lie down straight which makes it difficult because I have been in remission for bone cancer in my lower spine and right hip for about 13 years now so it’s very uncomfortable having to sleep up because of the pain in my back and hips. If anyone know if it’s possible to have issues with the pain and unable to swallow and the pain with the throat and ears and neck and head and with the jugular compression please let me know thank you
It sounds like you have compression/irritation of some of the cranial nerves @Emily - there’s explanations in the Newbies Guide Section & also some good videos on YouTube @Isaiah_40_31 found, here’s a link: (I think it’s the right one!):
2-Minute Neuroscience: Trigeminal Nerve (Cranial Nerve V) (neuroscientificallychallenged.com)
There are medications which can help with nerve pain, like Gabapentin, Carbamazepine, Amitriptyline (info in the Newbies Guide about that too), so it might be worth asking your GP/PCP if you can try this while you wait for your referral? It can take a little while to work & to find one which works for you though. So sorry that you have trouble with your back too, sounds like you have loads to cope with, sending you a hug
I have seizures and had been on gabapentin and it actually made my nervous system worse to were I went into a catatonic state for a few months. I’m on oxcarbazepime 300 mg 2 times a day
If you can take a blood thinner, Plavix has been helpful to relieve the vascular symptoms for some of our members who have IJV compression. They have been able to reduce the dose or stop taking it completely, once the jugular compression is resolved.
I’m sorry for your vision loss. It’s scary that happened overnight. Visual changes are often one of the symptoms of IJV compression but if you have a detached retina, that’s a different problem.
There is a Two Minute Neuroscience video for each of the 12 cranial nerves. They provide scientific information in an easy to understand way.
Thank you I’m about to watch them.