Hi everyone. Haven’t been on here for a while and missed you.
I am now awaiting a catheter angiogram with Dr Higgins. The wait is going to be a very long one thou
I just needed to vent as my symptoms are really baffling me and I just hope I’m not going down the wrong road with all this es stuff and jugular compression.
My worst worst worst symptoms by far are that behind my eyes there is this intense sucking/pulling. Also in my neck and head I feel so physically drained and like gravity is pulling me down. The presyncope is getting worse and the derealisation. I just want to release this feeling so bad. I also leak clear fluid from my nose most days.
I can deal with my ear fullness and whooshing tinnitus etc but these symptoms are awful.
My head had more exploding in the first year but now it’s definitely imploding and sucking numbness.
Anyone on here have a secondary csf leak caused by all of this, that feels more like they are low pressure as opposed to intracranial hypertension?
Thanks for listening
Oh Natty, I’ve missed you, too, & have been meaning to check in to see how you’re doing. I’m so sorry for what you’re going through and for so, so long! I think our member JustBreathe has had some similar challenges to yours as she has a CSF leak that refuses to stay repaired. You could try sending her a PM to discuss your situation compared to hers. She is very knowledgeable & could possibly provide you w/ some insight.
We do have several members w/ CSF leaks whose doctors felt that the pressure from ES IJV compression could have contributed to the leak & removal of the styloids & opening of the IJV would help stop the CSF leak. I think in some cases, ES surgery has made a big difference in that arena but not in others. CSF leaks can be tricky to take care of.
You have a double whammy going on with the IJV compression & a CSF leak. One could cause high intracranial pressure & the other low IC pressure. I wish so much your situation could be recognized as critical (CSF leaks need to be taken very seriously) rather than as something that can wait till they get around to fitting you in. I can’t imagine how hard this must be for you especially with a job and children to care for.
I will pray that the days seem to pass quickly till your appt. & that the angiogram produces very helpful results that will move your medical care more quickly forward.
Thinking of you- so tough to have such a long wait…the CSF leaks are generally indicative of high pressure I think; have you had the fluid tested to check it is CSF, I’m sorry, I can’t remember? With low pressure, you tend to get headaches with being upright, but with high pressure it’s the opposite, so you would feel bad laying flat, if that’s any help. I suppose if you leaked a lot, then you could get low pressure though…
You know from your scans that you have jugular compression from the styloids, so it seems likely that you’re on the right path.
Feel free to vent, we know how you feel & are happy to listen. Keep strong for your children, thinking of you & sending you hugs
Yes, yes, yes, everything you are experiencing is justified by the back and forth of leaking and jugular compression, low and high pressures. It is a miserable place to be, I am so very sorry. You absolutely need help and you have the team but the system is crushing all of this for you
I wish there was a way to push you to the front of the line or get you out for the care you so desperately need. Your fortitude is incredible.
Stay the course
Aww thank you so much for your lovely response.
Honestly you are all so supportive and always take time out to reply to people suffering
Yep I wish that too. I am always just waiting and waiting and when I call up and stress how unwell I am, they just say unfortunately you just have to wait.
It really frustrates me, as I think how unwell does someone have to be to get more urgent care.
My time of the month is due (sorry tmi) but this always heightens my symptoms ten fold.
@JustBreathe is very knowledgeable. We have been messaging and she has been such a great support, when she is going through so much herself. Bless her
Keep safe and thanks for being there
Thanks Jules. A lovely message of support to read
My symptoms are very contradicting and very much all over the place. My worst time is mornings and day time. They ease a little late evening and then the cycle starts all over again. Even lying on a bed wedge doesn’t make a huge difference.
I just feel like my neck isn’t on right and flow can’t get through. But this sucking feeling in my eyes, head, base of skull and ears is just beyond.
I don’t leak huge amounts so very hard to collect. However what I do leak does tend to give a positive glucose reading of around 60mgs on my machine.
I just want this nightmare to be over now. I’m exhausted physically and mentally by all of it.
Thanks as always for your support and kind words x
Thanks my love, for reaching out.
Yep unless you are literally dying, forget the nhs in this country at the moment. Covid has taken over.
I honestly have no clue what pressure I’m in anymore it just all feels horrendous.
I have emailed Dr Higgins some images as o believe this may be an suspicious area for a cranial leak. But I’m not quite sure. Hopefully he will get back to me.
I hope you are making some progress hun. I’m sorry for your suffering. Wish I could take it all away for all of us
My time of month always makes my symptoms crazy as well! You are not alone there. It’s really insane what the body does!
Thanks for reaching out. Crazy isn’t it how hormones effect these types of issues for people.
I know it’s ridiculous with the NHS right now, just makes you wonder how many are dying of other things because they can’t get treatment…if you went to A&E when you’re feeling at your worst I wonder if it woud help to bump you up at all?
I like Jules suggestion about visiting the A & E to see if it would get you bumped up to a sooner spot on your doctor’s schedule. Since I’m in the US I don’t know how your medical system works exactly, but maybe something like that would help.
It really is ridiculous Jules. I could go to a&e however when I have done in the past, they just say that you need to speak with your specialist who is taking care of this and a&e is more for emergency not on-going chronic conditions
Thank you. It’s a great suggestion and should help in theory but the system has faults. Also mr Axon who I’m under is 2 hours away so the a&e I would go to isn’t connected to him. X
Oh, no, it’s beyond mad…if it wasn’t so painful, you probably feel like banging your head against a brick wall! They wouldn’t say that if you had a heart condition, & IH can be pretty severe
So frustrating for you, Natty! I wish our sympathy/empathy alone could help diminish your symptoms.
Hi, I’m on Mr Axons list for an operation to remove my stylus.It should have been done last year but with covid I dont know when it will happen.I’ve had a couple of letters to say that i’m still on his list.Have you seen him recently and is he going to do your operation? I am in agony at the moment, I have compression on my carotid artery…Jan xx
So sorry that you’re having such a long wait too, it’s tough. Hope that things will improve in the NHS soon. Gentle hugs
Waiting is the WORST when one feels terrible. Hopefully the COVID limitations will ease up soon & you’ll have your surgery before too much longer. I’m glad you’ve got acknowledgement that you’re still on Dr. Axon’s surgery list.
So sorry you are in so much pain. No I haven’t heard anything and I ring every couple of weeks, stressing how unwell I am. I need the catheter venogram first, so surgery is way off for me.
I really hope you get to surgery soon x