I have been prescribed Brilinta and Xarelto by Dr. Hepworth. I tried Brilinta but only for 1 week before needing to stop for a different surgery. It didn’t help much, so after that surgery he switched me to Xarelto which I’ll start today.
Did blood thinners help your symptoms at all? My main symptom is a debilitating headache 24/7.
Also what dose are you on? I was written for Brilinta 60 mg twice daily or Xarelto 2.5 mg daily. The Xarelto dosing is really low compared to what’s used for DVT or other indications.
@jsisto - Different blood thinners have different mechanisms for working in the body (this is true of all medications that have similar effects to each other) which is why Dr. Hepworth probably put you on a lower dose of Xarelto. If it doesn’t help after you’ve taken it for a couple of weeks, you should ask about increasing your dose. For the most part, blood thinners do help reduce headaches caused by IJV compression, but we’ve also had some members who weren’t helped by it.
Hopefully someone who’s had good results will post a response to encourage you.
I have been on Brilinta 60 mg BID for 3 weeks, unfortunately no improvement with symptoms. But I was informed I need to try it for 3 months. So I hope I have some improvement within that time
Thanks. May I ask who said 3 months? Hepworth made it seem like if it was going to work, you’d see benefit the first week. This seemed like a really fast time to see a positive effect.
I was told by my Neurologist that diagnosed me with VES, she is also on the doctor list on this site. I agree one week seems too soon and 3 months seems too long.? I think in my case it can just be documented as a true “trial” period of being effective/ineffective. I also see another Neurologist specific for migraines, which I have tried different medications, infusions, botox injections for temporary relief. I know it does not solve the condition, but any relief from symptoms is a plus.
That’s amazing your neurologist diagnosed you with VES. The neurologist I consulted with at Mayo missed this even though my venogram stated mild compression (it’s more moderate to severe) and my home neurologist definitely doesn’t know much about this.
What migraine meds work for you? I was well controlled with Botox and Ajovy for 2 years and then they stopped working. Nothing helps anymore and I’ve had a moderate to severe headache 24/7 for over a year.
Hi @jsisto
I was prescribed plavix / clopidogrel pre surgery from dr Hui
My dose is once a day at 75 mg
During my first week of taking it I saw major improvements in cognitive functioning, and less brain fog
Second week was great as well but eventually I think I just got to a point where it didn’t seam to progressively get better and better
I was taking the generic brand because plavix brand name cost about 200 for a month dose,
It helped me over all but
A couple months of taking it my pharmacy gave me “same meds” but by a different manufacturer .
A couple days into taking it I was hit with major depression and anxiety attacks, it was suggested to me it may be the new meds and I stopped taking it till we could find the same manufacturer as was provided before.
I stopped taking plavix all together before sept 2023 surgery with Hepworth
And although we had good results from the procedure initially , about 5 months or so afterwards the head aches and brain fog, speech problems and tinnitus and symptoms started getting bad again
Anyhow I started taking the plavix again after my 1 year check up from dr Hepworth
I notice better planning and less brain fog again initially but after about two months of taking it,
I am still having my normal symptoms and am wondering if it should continue
I am told it is an anticoagulant and not sure how it compares to the other meds you spoke of though
Just my experience
One thing I do notice is my tinnitus and head ache , and eye pain and ear pain all ramp up when I lay down with a pillow,
I don’t use one for sleep but spend about ten minutes on occasion with a pillow to read until it becomes unbearable
Head Position seams difficult to find the right spot and happy place but makes all the difference in my day
Wishing you the very best today
I due hope you can find some relief with your head aches as well
@mekanX - If you had bilateral compression & have only had one side done, getting the other styloid removed & IJV decompressed, too, can make a big difference. In spite of what doctors say, unilateral repair in bilateral cases rarely is as beneficial as getting the whole bilateral problem treated when symptoms persist after the first surgery.
@jsisto asked a good question: Have you had post op imaging? If so, what does it show? If you haven’t had it, you should see about getting a follow up CT w/ contrast or whatever type of test Dr. Hepworth recommends.
In the last three years, I have had yearly testing thru Mayo, with no answers! and they are supposed to be the best, Right? But with all of the testing, they did find additional issues, So I still go to Mayo for those providers, which are awesome. But I am done with Neurology at Mayo. And I was so lucky to find this Neurologist, referred by my Cardiologist, to finally have answers. All of my imaging notes severe bilateral compression. And they were unable to successfully perform a venogram due to the compression. I am anxiously waiting to get an appt with neurosurgery for further treatment.
I have tried many migraine meds Emgality, Nurtec, to name a couple I was taking Nurtec every other day for a while, but I dont think there was much improvement. And you can take Nurtec along with Ajovy. Fioricet can sometimes stop the pattern, although, you can not take that medication to often or it causes rebound headaches. But I have had the best response to break the constant headache with a double dose medrol pak taper. All of these meds are diagnosed by my “headache Neurologist” like your Neuro they really do not deal with ES.
I recently just tried the medrol pak again but unfortunately no improvement this time. My symptoms are severe dizziness, visual problems, fainting, head pressure but not really migraine. Im on leave from work, I had hoped to go back last week. But I dont know how to function with such awful symptoms.
I’m so sorry that you’re feeling so rough @birdie1 … unfortunately we’ve found that Mayo aren’t good with ES either. Will you be able to have surgery? @mekanX I hope that you can see Dr Hepworth again, and find out what’s going on…so sorry that you have symptoms back after the initial success of your surgery
I hope surgery could happen soon but need to be seen. Referrals sent to Fargen and Nakaji. Dr Fargen, no information on when I can be seen???. Dr Nakaji is recent referral, I called today to see if they have all the information and waiting for a call back. Fingers crossed I can get an appointment soon.
Did you get all your imaging transferred to Fargen too?
They want the referral and imaging received, then it goes to Fargen’s NP for review and then they call you to schedule.
At least that’s my understanding.
Yes, Fargen has had all of my records for one month. I am told the intake nurse only calls on Fridays by going down the list. I just wish I knew what number I am on that list. The nurse calls and gets more information regarding the case, then it is sent to Dr Fargen for review. After review they call back to schedule. I was informed it is a long process. Very discouraging
Ajovy and Botox worked well for me for 2 years and then stopped working. I have tried almost every medication, nerve block, inpatient admission possible and nothing seems to help anymore. i am trying Low Dose Naltrexone now and was going to try Boswellia- a natural supplement to see if that helps. The headaches and tinnitus are my worst symptoms.
@birdie1 - As you have discovered, when it comes to ES, Mayo (that’s all Mayo clinics in the US as far as I know) is worthless so are a lot of other large medical institutions in this country. I think ES is something many doctors heard about in med school in passing but never learned anything about. A number of our members have been told ES doesn’t exist & their symptoms are psychosomatic so they were referred to psychiatrists. We are always aghast when we hear those stories on here!
@jsisto & @birdie1 - I think I’ve said this before but will reiterate that Dr. Fargen is a “stent guy”. I don’t believe he does IJV decompression surgeries. He’s done a few styloidectomies but is still relatively new to that surgery so some of those patients have had to have revision styloidectomies done by other more experienced doctors. You need to have the cause of your IJV compression removed before ever considering a stent in that area. Drs. Costantino, Hepworth, Nakaji, Cognetti & Damrose are your best options for that surgery.
