Thank you . You did well 
1 Like
Dr. Hepworth used to put his patients w/ IJV compression on Plavix but a couple of years ago he switched to Brillinta (not sure why).Taking a blood thinner seems to help improve vascular outflow from the brain for some people thus reducing symptoms. Thatās likely why Dr. Fargen prescribed it for you.
1 Like
@Isaiah_40_31 , I prefer plavix because it has a lower bleed risk, it is once daily dosing, and it cost me $3 with my insurance plan. Now letās see if it helps.
2 Likes
Yes - surgery wasnāt badā¦ but didnāt properly check my schedule before moving forward with it and had to go back to work only three weeks later. Definitely recommend better planning !
2 Likes
Brillinta is quite pricy for sure!! I paid a whopping amount for mine then couldnāt take it for even a month because it made my symptoms worse. I hope Plavix is very helpful for you.
1 Like
@Isaiah_40_31 @TML @Jules @Bmmac @ROkhuysen it has been a while since I posted. I went back to work in august and have been very busy but i have an update that I think some will find interesting. My venogram showed many collaterals and confirmed ICH and severe venous compression with head turning. Iām scheduled for a right styloidectomy and C1 shave in January. I convinced Dr. Hui to allow me to try hormone replacement therapy and started it a month ago. It has relieved my symptoms significantly. I believe the estrogen is keeping my collaterals from collapsing. I can sleep much longer and better. I still have to sit to sleep but only at 25 degrees so thatās a massive improvement (I was sleeping at 45 degrees before). I havenāt had a morning headache 98% of the time since starting hormone replacement therapy. I really think that doctors need to consider this in post-menopausal women who are deteriorating. The past one year has been a nightmare for me until I started estrogen. Iām looking forward to getting my surgery and hopefully lay down to sleep flat one day. I know the tinnitus is unlikely to ever go away but if thatās all that I have to live with then Iām ok with that.
4 Likes
Awesome news. I am assuming you are doing bioidentical estrogen and progesterone therapy?
Interesting it is helping you so much 
3 Likes
Wow, fantastic to hear how much the HRT has improved your symptoms! Iām so pleased for you & hope this helps other women of a certain age members! Thank you for sharing this, and long may it continue! 
1 Like
I think so. Combipatch is what I am using as that is what my insurance covers
2 Likes
I think our doctors need to pay attention to this. I did a lot of research on estrogen and its effects on vessels. Here is one review that was very helpful Estrogen and vascular function - PubMed
Estrogen is a vasodilator. I think I was compensating with my collaterals very well until I turned 49 when my estrogen levels probably started to drop slowly over the subsequent 4 years. I wish that I (and my doctors) had thought of this relationship before, given my age!
3 Likes
Thanks for sharing thatā¦Iāve posted a link to the article in the Research papers category.
I truly appreciate how we all work together on this forum to share the information we learn on our ES journeys about whatās helped us so it can also help others!
Thank you for sharing the research link & your experience , @Garden_Smurf! Iām so glad to know about your improvement. Iāve been on HRT since 2017, & what youāve shared may be the answer to the reason my vascular symptoms were so mild.
Weāve long known hormones played a role in ramping up ES symptoms, at least for women, as so many have commented about symptoms increase premenstrually or menstrually. Itās most interesting to now know that those same hormones that can aggravate symptoms in a younger woman also help preserve vascular integrity which is lost when they decline.
Who are you planning to have do your surgery?
2 Likes
The estrogen piece does make me wonder if thatās why ES is statistically most typically presented in mid-life females (vs younger females or males in general). One could counter-argue and say that itās because the styloids/stylohyoid ligaments calcify as you age, which is why mid-life is more typical. However, youād expect to see ES equally in males too then (especially since population research shows that males have on average longer styloids than females). The estrogen decline is a differential factor.
1 Like
So glad you are feeling better, and on the books for surgery ! Take care !
1 Like
@TML @Isaiah_40_31 @Bmmac @Jules @ROkhuysen
Thanks for the well wishes. I wanted to clarify something. I do not think that the lack of estrogen caused by jugular compression/ICH. I think I have had this for at least a decade or two (I have had morning headaches for a very long time). The styloid still needs to come out.
However, I do think that the collateral circulation that my body was using to drain my brain (inefficiently) just didnāt work very well once my estrogen levels started to decline in peri-menopause (starting at age 49). When I went into complete menopause I completely decompensated to the point that I could barely sleep and had to stop working. I couldnāt even lay down for short periods without feeling pressure in my head so Dr. Hui thinks I was collapsing the collateral circulation. The long term solution here is not estrogen, but instead, right styloidectomy with C1 shave. I do have issues on my left side too but not because of the styloid. I donāt know why but when I turn my head as far as possible to the left, I also collapse the jugular. But I just wonāt turn my head left that much (I had a hard time doing that anyway for the venogramā¦arthritis). Fine with me!
From the venogram:
3 Likes
I understood what you meant!
What Iām trying to say is that stylojugular compression can result in symptoms, but that stylojugular compression PLUS drops in estrogen levels could more likely result in symptoms due to the mechanical obstruction of the IJV in combination with the reduction of vasodilation (due to reduction in estrogen levels). I think this may be why we see ES most commonly in middle aged women - they had the mechanical obstruction for years but it wasnāt until adding the estrogen level reduction that symptoms started to appear
2 Likes
@Garden_Smurf - I also understood you to be saying the estrogen has helped reduce your symptoms/made them more tolerable, but that you will ultimately need a styloidectomy & C1 shave to allow your IJV to open & thus more permanently reduce/relieve your symptoms. Thank you for your clarification, though.
@TML - I really like your insight as well:
2 Likes
I bet youāll feel lots better after surgery Garden_Smurf. The headaches improved immediately, and the tinnitus is slowly getting better. I do have a little stingy earlobe (improving) while nerves reconnect, and mild weakness of the right shoulder, which is also improving with physical therapy - but feeling SO much better
Make sure you take time off! I was only able to take 31/2 weeks off and it was not enough.
Best wishes!
Regina
3 Likes
Iām glad that youāre doing better @ROkhuysen
1 Like
Really good to read your update, @ROkhuysen. Iām glad your headaches disappeared so quickly & hope your remaining symptoms slip away one by one. Youāre right that the nerve recovery itself can be uncomfy apart from the surgery. I hope that aspect of nerve recovery gets over with quickly for you.
1 Like