I had my SAH 4 years ago. About 3 years ago- to this day, my ears began to get very "clogged" (or echoey) while I am in a sitting or standing position, but not while lying down. My family can always tell what position I am in when they call me, because they say my voice changes due to this. Others often ask me if I have a cold, because I try to relieve the pressure build up by sniffling. I'm just wondering if anyone else is experiencing anything similar.
I’ve had more issues with my ears since rupture, usually have to lay down on the opposite side of the one that feels clogged. I thought it was allergies.
Do you have allergies? I don't.
Moltroub said:
I've had more issues with my ears since rupture, usually have to lay down on the opposite side of the one that feels clogged. I thought it was allergies.
Alice, I do have allergies. Guess that’s why I thought it was allergies. But recently I found I was heading to a sinus infection. It was doing weird things to the right side of my brain which felt like it was moving in waves. Have you talked to your PCP?
Yes, I did. She offered me Claritin. It doesn't help. I've also tried changing my diet to a gluten free diet. that didn't help. Now I'm in the process of giving up coffee(caffeine). I drink one cup in the morning. Otherwise I only drink water. Since you're the only one who responded, I guess no one else is having this problem.
Moltroub said:
Alice, I do have allergies. Guess that's why I thought it was allergies. But recently I found I was heading to a sinus infection. It was doing weird things to the right side of my brain which felt like it was moving in waves. Have you talked to your PCP?
Hey Alice,
Post craniotomy, whilst still in hospital, I had a visitor. She made a comment about my head being like a bowling ball, finger holes and all. I cracked up laughing and I heard a loud gurgling sound a bit like blowing air through a straw into a milkshake. Nobody else could hear it but I sure did. I spoke to a nurse about this and was told, they had broken the sealed unit (my skull) so any pressure was leaking out through the holes. She told me once the holes had grown over the problem would fix itself, and sure enough the 'gurgling' did stop BUT, walking was awful. With every step I took I would get this whooshing sound. I have a pair of little mutts that need walking and this was a real challenge. By the time I had taken them out for their walk and returned home the whooshing had changed to an almighty pressure behind my eyes. I saw my PCP, he made out it was all in my imagination, gave me psych meds. I saw the surgeon who sent me to an ENT (Ear/Nose/Throat specialist) They couldn't find anything. Saw an ophthalmologist and he couldn't find any cause, so I just learnt to put up with it.
Since my last surgery where they replaced the entire shunt train I have not had the whooshing, but the pressure behind my eyes is MASSIVE. At times it feels as if my eyes are going to pop out of my skull. The pain associated with this is awful and I'm being told"...it will take time to settle..." its been over 2 yrs since my last surgery and still the pressure/pain is beyond belief. I have been prescribed anti nausea meds, blood pressure tablets, antihistamines and as I said psych meds, none of which have had a positive impact. And as for the PCP (which I have now changed), he told me "...ohh don't worry, its all in your head..." as if I didn't know it was all in my head. But he's meaning psych and I'm sorry, I might be crazy, but this IS NOT imaginary. The neuro's have adjusted the valve for the shunt and this has not had a positive effect, no matter what their tests show, I'm still having pressure problems.
All I can really say is get it checked. They may not be able to find a direct cause but if they can rule out anything serious, like me it may be a case of 'this is as good as it gets'.
Merl
Hi Meri,
Thanks for responding. I really thought I was the only one with pressure issues until you wrote me.
I've been to an ENT also, who told me wear a night guard, which didn't help. I don't remember anything from my stay at the hospital as I was in a coma (sometimes induced)for most of the time I was there.(3mos)
I felt fine for the most part except for horrifying headaches when I first returned home. The pressure in my ears started about a year later, I think, as things settled in I guess. People often tell me I'm crazy, but I think it's a response that comes from not being able to relate at all...an imaginary thing they think I'm experiencing. I never thought to get the shunt checked out, but I just don't want to go down that road again. The doctors are so far away. I've always accepted it as part of the destruction/reconstruction of the rupture.
Merl said:
Hey Alice,
Post craniotomy, whilst still in hospital, I had a visitor. She made a comment about my head being like a bowling ball, finger holes and all. I cracked up laughing and I heard a loud gurgling sound a bit like blowing air through a straw into a milkshake. Nobody else could hear it but I sure did. I spoke to a nurse about this and was told, they had broken the sealed unit (my skull) so any pressure was leaking out through the holes. She told me once the holes had grown over the problem would fix itself, and sure enough the 'gurgling' did stop BUT, walking was awful. With every step I took I would get this whooshing sound. I have a pair of little mutts that need walking and this was a real challenge. By the time I had taken them out for their walk and returned home the whooshing had changed to an almighty pressure behind my eyes. I saw my PCP, he made out it was all in my imagination, gave me psych meds. I saw the surgeon who sent me to an ENT (Ear/Nose/Throat specialist) They couldn't find anything. Saw an ophthalmologist and he couldn't find any cause, so I just learnt to put up with it.
Since my last surgery where they replaced the entire shunt train I have not had the whooshing, but the pressure behind my eyes is MASSIVE. At times it feels as if my eyes are going to pop out of my skull. The pain associated with this is awful and I'm being told"...it will take time to settle..." its been over 2 yrs since my last surgery and still the pressure/pain is beyond belief. I have been prescribed anti nausea meds, blood pressure tablets, antihistamines and as I said psych meds, none of which have had a positive impact. And as for the PCP (which I have now changed), he told me "...ohh don't worry, its all in your head..." as if I didn't know it was all in my head. But he's meaning psych and I'm sorry, I might be crazy, but this IS NOT imaginary. The neuro's have adjusted the valve for the shunt and this has not had a positive effect, no matter what their tests show, I'm still having pressure problems.
All I can really say is get it checked. They may not be able to find a direct cause but if they can rule out anything serious, like me it may be a case of 'this is as good as it gets'.
Merl
You most definitely are not the only one having pressure issues/concerns/difficulties
It took me a l o n g t i m e to get to that acceptance bit and some days I still don't accept it very well and next year I'm 20yrs past my first surgery. I still have people think "What the hells wrong with you?" that is why I tell people to come here, speak to people who know from experience and not just what they have read in a book or seen on a TV show. Even some PCP's have very little to no idea. One such PCP said to me "They've operated, they've fixed, there's nothing wrong..." then when I went to see the surgeon 3mths later he blew up at me because I should have been back to see him urgently if there was a problem. Problem being to see him I need a written referral from my PCP who says 'everything's OK'???
I understand your concern about being so far away from the specialists BUT I did something similar and ignored things for way too long and when things got real bad, I needed emergency surgery. My advise "Don't do that". Recovery from that episode took a long, long time. I'm not sure what sort of valve you have, but if its a variable valve, an adjustable valve, the settings may just need adjusting to relieve the pressure. Things do just become "acceptable" but just because its acceptable doesn't mean everything is OK. Be sure, get it checked out. We may still get labelled 'Crazy' but at least you'll know its a "Safe crazy"
Merl
My valve is by Sophysa and is programable. I guess I'll have to go to St Louis.
Merl said:
You most definitely are not the only one having pressure issues/concerns/difficulties
It took me a l o n g t i m e to get to that acceptance bit and some days I still don't accept it very well and next year I'm 20yrs past my first surgery. I still have people think "What the hells wrong with you?" that is why I tell people to come here, speak to people who know from experience and not just what they have read in a book or seen on a TV show. Even some PCP's have very little to no idea. One such PCP said to me "They've operated, they've fixed, there's nothing wrong..." then when I went to see the surgeon 3mths later he blew up at me because I should have been back to see him urgently if there was a problem. Problem being to see him I need a written referral from my PCP who says 'everything's OK'???
I understand your concern about being so far away from the specialists BUT I did something similar and ignored things for way too long and when things got real bad, I needed emergency surgery. My advise "Don't do that". Recovery from that episode took a long, long time. I'm not sure what sort of valve you have, but if its a variable valve, an adjustable valve, the settings may just need adjusting to relieve the pressure. Things do just become "acceptable" but just because its acceptable doesn't mean everything is OK. Be sure, get it checked out. We may still get labelled 'Crazy' but at least you'll know its a "Safe crazy"
Merl
Hi, my annie rupture was 3 years ago, I had coiling, shunt, and last year started having pressure and odd sounds in ears, they've checked ears, and did a MRA to make sure flow in coiled area was OK. They can't seem to find trouble for ear sounds and pressure other than sinus, just said it was tinnitus. I'm convinced that seems a diagnosis to use when can't find problem. I wish you luck, the rushing ng and whooshing sound is so annoying and it is worse at night. I have tried supplements for Vinnitsa, white noise machine as a distractor and sinus medication. The sounds started after a sinus infection. I've had slight bleeding in the ears at times but that does not seem to alarm the docs like it does me. But all docs seem to be resigned to the tinnitus diagnosis. I've also been trying mindfulness meditation for it. I am not convinced they have found the problem.Best wishes keep us posted.
I have a similar problem.... a LOT of times my head/ears just seem clogged. I am almost 8 years post rupture, have a shunt (I don't think it's programmable), coils & stents. The clogged feeling in my ears has been going on almost since I left the hospital. They did a CT scan and said I would just need to live with it.... that I was lucky to be alive. Shortly thereafter (prob a year after rupture) I went to Europe... the pressure from the plane made my ears pop dreadfully but it sure helped in the long run. I still have the clogged feeling but not 24/7 as before. I guess I am getting used to it???
I thought it was just me. I didn’t know this was a side effect. Thanks for the heads up Alice.
I have stents and constantly feel pressure in my ears. My doctor gave me drops and said it continues I should see an ENT. I thought it was odd that it’s been so long but just thought my body was changing. I’m going to reach out to my surgeon to follow up.
Shana said:
I thought it was just me. I didn't know this was a side effect. Thanks for the heads up Alice.
And Shana that is exactly why we should share here. Let's face it, no 2 stories are exactly the same. But we've all learnt something from our experiences, good and bad. Share it. It might contain the 'key' to someone else's torment. When I started this journey the WWW was in its infancy and I was pretty much alone, except for the dr's. That was more difficult. Now when I go to appointments, I take a note book and write their medical terms and jargon down, come home and get on the net "What were they talking about??"....Ask the question. Someone has the information......."Ahhh, now I understand....." and for me that is has been a HUGE help. Not only to obtain information but also to share it. For me that sharing has put my experience, which has been a heavy load to carry, to a practical use, rather than a destructive one. Helping others to share that load.
I have clogged up ears all the time since my sah it sounds like I have suddenly put my head under water horrible I also get ear infections alot
Hello - we recommend you consult your physician.
I had coiling last December and still get headaches almost everyday. When I do, I feel pressure in my ears and the only way to get rid of the headache is to lie down. I simply have to put my head down no matter where I am. Good luck to you.
Lisa
I know tinnitus. I'd had it for many years before I had the rupture. In fact, when I woke up from the coma,my family asked me 2 questions immediately:1- Did I still have tinnitus? (yes) and 2- Was I still vegetarian?(yes). This pressure or clogging is much different than tinnitus, although I sympathize with those of you who are new to the experience of tinnitus, because I know how nerve-racking it can be. The interesting thing about this ear pressure is that it's positional. When I wake up in the morning, I'm fine. As the day wears on, the pressure increases. If it gets to be too much, I lay down for a while, or put my head between my knees. But I have never talked to my neurosurgeon about it-just chalked it up to collateral damage.
Sorry Alice...I've not had to deal with this. I cannot imagine going through this frequently, though. How frustrating! I'm sending good "ear" mojo your way!
Thanks pixiechick!!!
pixiechick66 said:
Sorry Alice...I've not had to deal with this. I cannot imagine going through this frequently, though. How frustrating! I'm sending good "ear" mojo your way!