I am having yet another issue and do not know if it’s related to the MAV. My hearing is still excellent, and in the past I’ve had some fullness in my ear, but that’s about it. During the past few weeks this weird symptom is getting more frequent. So hard to explain. I experience a whooshing type sound in my right ear when I am in certain positions, and also notice that it intensifies when I first sit down after walking a little bit. I definitely don’t believe it’s an ear infection - I have no pain at all. It is mostly just annoying and I am worried to have yet another symptom. My husband suggested that maybe it’s from the water retention that occurs during pregnancy that can inflame the eustacian tube - that doesn’t sound right to me.
— Begin quote from “MAVLisa”
I am having yet another issue and do not know if it’s related to the MAV. My hearing is still excellent, and in the past I’ve had some fullness in my ear, but that’s about it. During the past few weeks this weird symptom is getting more frequent. So hard to explain. I experience a whooshing type sound in my right ear when I am in certain positions, and also notice that it intensifies when I first sit down after walking a little bit. I definitely don’t believe it’s an ear infection - I have no pain at all. It is mostly just annoying and I am worried to have yet another symptom. My husband suggested that maybe it’s from the water retention that occurs during pregnancy that can inflame the eustacian tube - that doesn’t sound right to me.
— End quote
Lisa,
When this all first started with me about four to five months into it I started having the fullness in the ears and what I refere to as a pulsating , whooshing type sound or sensation in my left ear … the same side I get my headaches on. It was always when sitting down or laying down at night it seemed to start for no reason.
I had my ears checked and they said I had no problems there…I think it was either a symptom of the MAV or of my hormone changes that I am going through. All of sudden one day it just went away…I get it ever so lightly at times. No pain just a very strange and annoying sensation.
So I would think it could be due to the MAV or possibly hormone changes going on in your body due to the pregnancy.
I think I get something similar. It usually doesn’t last very long, and isn’t too bothersome. I think I usually feel it in relation to my heart beat…like it whooshes at the same pace. So maybe that’s why you get it after walking? I don’t think its anything to worry about. Honestly I don’t even know what normal means anymore when it comes to my body.
Thanks Timeless and Cassada.
Cassada - so interesting that you said that about the heartbeat. I was thinking that mine is related to it as well.
Hi Lisa,
Sorry to hear about this new symptom. Hopefully it will go as mysteriously as it came. Does noise make it worse? How long does the whooshing sound last for? Does it disrupt your sleep?
lisa
I don’t think noise makes it worse. It can last for a VERY long time if I don’t reposition my head, and sometimes that doesn’t even help. I believe it woke me up one time.
otohns.net/default.asp?id=14642
Pulsatile or pulsating tinnitus
Q: What causes the sound of your pulse to be heard in your ears?
A: This is known as pulsating, pulsatile or vascular tinnitus. Here is a list of the possible causes of pulsatile tinnitus:
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Chronic inflammation and/or infection of the middle ear. Chronic inflammation is almost always accompanied by increased blood flow to the inflamed tissue; since this tissue is in the ear, some people are able to hear the increase in blood flow.
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Eustachian tube dysfunction. For reasons which are unclear to me, ETD can sometimes result in pulsating tinnitus.
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Middle ear effusion (fluid.) The middle ear is normally an air-filled space. If, due to infection, inflammation or Eustachian tube dysfunction fluid accumulates behind the middle ear, pulsating tinnitus may result. It would be accompanied by decreased hearing and a pressure sensation, and may also be accompanied by pain. Treatment may be medical (with antibiotics, decongestants, nasal steroid sprays and so forth) or surgical.
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Vascular tumors. Such tumors in the middle ear go by a variety of names, but are most commonly referred to as glomus tumors or paragangliomas. They are benign (not cancerous), but due to their location and vigorous blood supply, they can be very troublesome. Treatment is surgical.
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Arteriovenous malformations (AVMs.) AVMs are abnormal collections of arteries and veins that sometimes occur within the cranial cavity near the auditory nerve. AVM pulsation against the auditory nerve stimulates the nerve, resulting in a pulsating tinnitus. AVMs can also occur outside of the cranial cavity. AVMs can develop as a result of trauma, but can also occur due to abnormal development in the womb– the individual is born with a small AVM which enlarges later in life. Treatment is usually surgical.
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Carotid artery-cavernous sinus fistula. A fistula is an abnormal connection; thus, carotid artery-cavernous sinus fistula is an abnormal connection between a very large artery and a very large venous “lake” (not really a “sinus” in the sense of facial sinuses) within the cranial cavity. It is usually the result of severe head trauma. Treatment is nonsurgical, requiring the services of an interventional radiologist.
**7. Venous hum. Patients who are pregnant, anemic, or have thyroid problems may develop increased blood flow through the largest vein in the neck, the jugular vein. The jugular vein carries blood from the brain back to the heart; in so doing, it traverses the middle ear. Turbulent blood flow anywhere in the course of the jugular vein can be heard in the middle ear as a “hum” which may or may not fluctuate with the pulse. Correction or resolution of the underlying problem often results in improvement.
**
There are other, less common, causes of vascular tinnitus, but these are the “biggies.”
Hi Lisa,
Your husband could be correct with possible inflammation or fluid in the ear. A mild diuretic, maybe even something like Diamox (which is used to help pull fluid from the ear as well as used in Meniere’s) might be worth a try if this lasts much longer or becomes more bothersome. Is there an neuro-otlogist you can get in to see soon?
Lisa
Timeless- thanks so much for that. it is reassuring to know that it might actually be from the pregnancy. I sure hope so.
Lisa - I don’t have an appt with a neuro-otologist. But, I ended up making an appt with Carolyn Bernstein. Remember, doctor Rauch recommended that I see her. my appt is on oct 19. I forget if I told you, but when I emailed Dr. Rauch with a question, he again mentioned that I should really speak to Dr. Bernstein.
Hi Lisa,
I am still very confused as to why Rauch passed you to Dr. Bernstein? I still would think a neuro-otologist (ENT-anyone, not necessarily one who deals with MAV) might be able to better help you then a neurologist with regards to this new sensation in your ear. I know the last thing you want to do is see another doctor, but maybe there is an ENT locally that can see you about this specifically. You don’t even have to go into the whole MAV explanation.
Lisa
thanks for the suggestion, but I just hate to go to a general ENT when this can very well be MAV related. And, I sure don’t want to see the bewilderment on the ENTs face when I tell them about MAV. I can always email Rauch, as I believe his background is as an ENT, not neurologist. I’ll have my husband look into my ears tonight, but highly doubt it’s an infection or anything like that.
sorry lisa. I just realized that I may have been unclear. I never emailed rauch about this new sensation. He just referred me to Bernstein in the past. still confusing, I know.
It definitely doesn’t sound like an infection. I also don’t think you even have to mention MAV to a local ENT…just see what he or she says with regard to the whooshing sound and your pregnancy. Fluid retention could absolutely cause this and as I mentioned before a mild diuretic may do the trick. Any ENT should be skilled at this issue. Just a thought. Yes, Rauch is an ENT.
I remember that Rauch referred you to Bernstein way back, which just doesn’t make any sense if he believes you have MAV since isn’t that his specialty. In any event, let us know what Bernstein has to say.
Lisa
yes, I’m still so confused by that referral as well. he was as sure as he could be that it was MAV. in any event, I’ll see what she has to say and let you know
— Begin quote from “MAVLisa”
yes, I’m still so confused by that referral as well. he was as sure as he could be that it was MAV. in any event, I’ll see what she has to say and let you know
— End quote
So Dr Rauch referred you to Dr Bernstein after you saw him last or when you emailed him a question? Did he diagnois you with MAV…and would he treat you for it were you not pregnant. I know my ENT who diagnoised me said I would have to be treated by a neurologist, I am not sure I understand that thought process.
So Dr. Bernstein is a neurologist correct, maybe she can help you with ways to help while you are pregnant or at least you can also have a womans perspective and if I am incorrect she suffers or suffered from Migraine herself, correct?
Timeless - When I went to see Dr. Rauch he did diagnosis me with MAV. In the course of our conversation, he recommended that I read Dr. Bernstein’s book and also said that it would be worthwhile to see her. I was perplexed by that, and inquired about whether he would be able to treat me after pregnancy and he said yes. I remain confused. I ended up making an appt with her, as I figured it cannot hurt. She is director of a woman’s migraine center. I sure hope she knows about MAV. I cannot emotionally handle an appt with a doc who doesn’t get it. Her book didn’t really mention this, but maybe she didn’t choose to write much about it. Perhaps, she knows a lot about it. That’s a good point - maybe she knows more about pregnancy and this being that she only txs women. I’ll let you know how it goes.
— Begin quote from “MAVLisa”
Timeless - When I went to see Dr. Rauch he did diagnosis me with MAV. In the course of our conversation, he recommended that I read Dr. Bernstein’s book and also said that it would be worthwhile to see her. I was perplexed by that, and inquired about whether he would be able to treat me after pregnancy and he said yes. I remain confused. I ended up making an appt with her, as I figured it cannot hurt. She is director of a woman’s migraine center. I sure hope she knows about MAV. I cannot emotionally handle an appt with a doc who doesn’t get it. Her book didn’t really mention this, but maybe she didn’t choose to write much about it. Perhaps, she knows a lot about it. That’s a good point - maybe she knows more about pregnancy and this being that she only txs women. I’ll let you know how it goes.
— End quote
I have read part of her book but she did not mention much about MAV at all that I have read so far.
I would be confused too as to why he would want you to see someone else if he could /would treat you. Of course maybe it will not hurt the only thing I have found is seeing different ones they seem to have a diff perspective on what to do and sometimes even a different diagnosis which is frustrating by itself. Maybe she will just be the perfect fit that you need to move forward with all of this …that is the I have had is finding a doctor with whom I have felt a good fit. and without that the trust level is diminished and it makes it hard.
So maybe her being a woman that will work great for you , I hope so …so that perhaps your suffering can be helped and you can move forward with your life for you and your family, especially the little one.
Timeless - forgot to answer your other question. yes, she is or was a migraine sufferer.
The swooshing noise has been a symptom for me, sometimes loudly and sometimes faintly. I used to describe it as hearing my heartbeat through my ears. It is worse at night when everything else is quite. Sometimes it is so bothersome that I cant fall asleep. I get actual ringing at times too. When I was on Verapamil I didn’t notice it nearly as much as when I have been med free or when I was on both Effexor and Topamax. Lisa it could be that yours is directly related to your pregnancy but for me I have always attributed it to yet another odd MAV symptom.
Hi Ben,
That sounds like classic tinnitus that is probably driven by MAV as the meds seem to help. I have tinnitus as well and when it was at it’s worst I found listening to a white noise sound machine helped to drown out the noise a bit when I was trying to sleep at night. Sharper Image sells an excellent one if you are interested.
Lisa