This is topic Desperately Seeking Quiet-hearing my pulse in ears in forum Medical Questions at LymeNet Flash.


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Posted by amydee (Member # 34832) on :
 
I am desperately seeking the reason and possible cure for the symptom of hearing my pulse in my ears.

This symptom has been ongoing since I became really ill in 2010. I have been in treatment for 1.5 years.

This pulse sensation that I hear in my ears occurs at all time of the day but seems to increase at night. It has made any exercise, besides easy walking, nearly impossible. As my exertion increases so does the sound and then pressure in my head. Also, heat makes it worse.

I have tried incorporating light weights for exercise and the pounding happens even with the light weights. It happens when my stress level goes up. I can hear the increase in pulsations with my increase in stress.

I just keep thinking that I cannot spend the rest of my life like this. I cannot NEVER exercise again. Never run again, never have peace in my head.

I went to see a Neurologist today and he just looked at me and told me that I was just going to have to live with it. WHAT? I mean, I don't put a lot of stock in anything a Neurologist has to say but really? What a jerk.

I was evaluated for CCSVI back in January and found to meet 4 out of the 5 criteria for the condition. I have since changed LLMD's and am going for a consultation with an Interventional Radiologist about having the procedure. Wondering if he might shed some light on this.

Anyone out there ever had this symptom and had it resolve? Anyone out there who has/had CCSVI with this symptom and had the angioplasty procedure and the symptom resolve?

Anyone, any info or advice?

Thank you in advance!
 
Posted by Ellen101 (Member # 35432) on :
 
I had a strange issue with this recently after having a tooth exracted. It was extremely irritating and worrisome. Mine was definitely related to having inflammation from a dry socket. Could there be some dental inflammation? Have you seen an ENT?
 
Posted by Jessig627 (Member # 36240) on :
 
Hi Amy! Sorry to hear you are having this horrific symptom. I had this quite often and it was much worse at night or upon exercising.

Have you been evaluated by a cardiologist? Only after being evaluated and starting beta blockers did this resolve some for me. It hasn't fully gone away, but it's much more manageable.

Being able to tell your heart rate by just sitting still is scary. I hope you can find the cause or at the very least get some relief soon!

Take care!
 
Posted by nonna05 (Member # 33557) on :
 
Sorry,,what is CCSVI?

Are you getting dizzy or stuffy head?????
 
Posted by amydee (Member # 34832) on :
 
Ellen 101, no, I have not seen an ENT. That would be my next step I suppose.

Jessig627, I haven't been evaluated by a cardiologist lately. I could try that again. I just hate to be on another Rx but I sure could use some relief.

nonna05, CCSVI is chronic cerebrospinal venous insufficiency which is narrowing of the jugular veins that bring blood flow back from the brain. They think it is from biofilm buildup.

It was first found in MS patients and is now being found in Lyme patients. (Makes sense since a lot think MS is Lyme)

Anyway, you can open the jugulars with a procedure called balloon angioplasty. The downside is that there is always a risk of restenosis not to mention other risks just from the procedure itself.

I was evaluated by a practice called CCSVI Atlanta.

No, I don't get dizzy or a stuffy head although sometimes I do feel pressure in my head usually with physical exertion of some kind.
 
Posted by Keebler (Member # 12673) on :
 
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Hearing your heart beat could be due to inflammation, circulation and other things. Your LLMD is the best to first report this to and they can help sort it out and refer you out if necessary.

However, lots of ear detail here - especially about how to reduce inflammation:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS & SCD - Superior canal dehiscence
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Posted by Keebler (Member # 12673) on :
 
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important to consider:

" . . . CCSVI is chronic cerebrospinal venous insufficiency which is narrowing of the jugular veins . . ." (end quote)

If that vein is narrowed, lifting weights can be dangerous. You say you met 4 of 5 diagnositic criteria but also know that lyme can cause the symptoms - or lyme and CCSVI can also be piggy-backed.

For now, as you wait to be more fully assessed: Tai Chi, Qi Gong or Restorative Yoga might be best. Pilates may work just find a good LL instructor.

Whatever movement therapy you choose, clear any questions about what moves are okay or not with your doctor first.

A few Qi Gong and Tai Chi moves have the head bowed down to the floor. You might avoid those. I pushed to do these (even if gentle) but they were not right for my body. I just started leaving out that move and did the rest.

I hope you find the answers you need.
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[ 05-02-2013, 02:09 PM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
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Circulation & inflammation matters discussed here, too:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=077325;p=0#000000

CARDIAC INFO & SUPPORT

Includes:

Dr. B's SAFE EXERCISE and PT Rehab guidelines,

EXERCISE INTOLERANCE is (partially) explained in the article: "when exercise doesn't work out" (and what we can do about that)

ADRENAL, CARDIAC, MITOCHONDRIA & MYELIN SUPPORT - that all helps movement better work for us

Styles discussed: Pilates; Qi Gong; Tai Chi; Yoga; water; strolling; etc.
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Posted by Keebler (Member # 12673) on :
 
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This comes to mind as something that could be very helpful to reduce inflammation and nourish cells:


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/115258?

ASTAXANTHIN


I assume you are gluten-free, and also free of dairy, corn, and soy? If not, in the order listed, they are very likely candidates that cause inflammation.

Mold exposure can also contribute to inflammation as can chemicals in household and person care products, and lawn.

Right now as the plant kingdom is blooming, pollen is also suspect. Stinging Nettle helps me.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=031228;p=0

STINGING NETTLE - Links set

The herb, STINGING NETTLE may serve to compensate for the reaction by calming the the cytokine storm that is often part of a herx reaction, infection or even allergic reaction.
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Posted by Keebler (Member # 12673) on :
 
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: Magnesium - LINKS sets

See the Magnesium in the ER and hospital - and blood vessel health - notes here. As a wonderful agent to lower inflammation, it could be a great help.

Also cross-search terms at PubMed
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Posted by amydee (Member # 34832) on :
 
Keebler:

Thanks for all the great links and input. I will have many things to look into now.
 
Posted by Judie (Member # 38323) on :
 
I had horrible thumping in my ear.

I had a couple docs suggest magnesium

I take around 800mg of high quality magnesium per day now. I take a combo of Opti-mag and Ultra-mag.

I have had no thumping for awhile. I assume it's from the magnesium, but who knows...
 
Posted by Lymeorsomething (Member # 16359) on :
 
I developed this recently too. It's pulsatile tinnitus and should be checked out by an ENT or neurologist because it can be associated with blood flow issues, aneurysm, etc. However, a cause is often not identified. MRI/MRA helps rule out serious causes.

Lyme is associated with tinnitus too though and is a confounding factor.

Do you have any overbite in the jaw? Sometimes correcting this or using a teeth grinding guard at night can resolve it.
 
Posted by amydee (Member # 34832) on :
 
Judie, I take Magnesium but maybe not enough. I will try to boost it and see what happens.

Lymeorsomething, Yes, had an MRI and neurologist scheduled me for an MRA. I don't have an overbite and don't think I have any teeth grinding issues. I am sure my hubby would have noticed this.
 
Posted by Judie (Member # 38323) on :
 
That's really interesting about the teeth grinding.

I use to clench my teeth at night .Some meds will make you have a stiff jaw and effect the ears.
 
Posted by phyl6648 (Member # 28522) on :
 
I have this too along with my ears ringing 24/7 and have seen ENT, Neuro. and my regular MD, no cause has been found .. Unless its lyme related..

So tired of doctors not taking me seriously...
Hope you find an answer and when you do please, please let me know,
Mine is so much worse at night and when there is no noise.. My right ear is the worse for hearing the heart beat.. I am going to request an Ultra sound on my neck to see about blood flow..
 
Posted by phyl6648 (Member # 28522) on :
 
I have this too along with my ears ringing 24/7 and have seen ENT, Neuro. and my regular MD, no cause has been found .. Unless its lyme related..

So tired of doctors not taking me seriously...
Hope you find an answer and when you do please, please let me know,
Mine is so much worse at night and when there is no noise.. My right ear is the worse for hearing the heart beat.. I am going to request an Ultra sound on my neck to see about blood flow..
 
Posted by amydee (Member # 34832) on :
 
phyl6648, I will let everyone know if I find out anything. I go for my CCSVI consult in a couple weeks. We will see if they think this might be related.

Judie, I increased my magnesium and I think it is a little better!
 
Posted by Al (Member # 9420) on :
 
.

I have had this for a about a year now;
It's not the heart pulsing or feeling your heartbeat! I have tried to match it with the heart beat and it's not connected, It feels like an ear problem but not outside.

My only guess is a nasal infection most likely Fungal; The nose is connected to the ears !
Do you have a thrush issue ?

Google this for some possible causes,

(Ear pulsing, lyme disease)
 
Posted by Al (Member # 9420) on :
 
.

I have had this for a about a year now;
It's not the heart pulsing or feeling your heartbeat! I have tried to match it with the heart beat and it's not connected, It feels like an ear problem but not outside.

My only guess is a nasal infection most likely Fungal; The nose is connected to the ears !
Do you have a thrush issue ?

Google this for some possible causes,

(Ear pulsing, lyme disease)
 
Posted by Al (Member # 9420) on :
 
.

I have had this for a about a year now;
It's not the heart pulsing or feeling your heartbeat! I have tried to match it with the heart beat and it's not connected, It feels like an ear problem but not outside.

My only guess is a nasal infection most likely Fungal; The nose is connected to the ears !
Do you have a thrush issue ?

Google this for some possible causes,

(Ear pulsing, lyme disease)
 
Posted by Judie (Member # 38323) on :
 
"Judie, I increased my magnesium and I think it is a little better!"

That's fantastic. I really hope it helps. [Smile]
 
Posted by one4islands (Member # 28187) on :
 
Prior to my confirmed Lyme diagnosis, I was experiencing this.

It would only happen when I put my head on the pillow at bedtime and throughout the night. Quite often when getting up to pee in the middle of the night-never long lasting.

I saw an ENT two months before I began experiencing this and was diagnosed with eustachian tube dysfunction.

I originally went to see the neurologist due to 1.5 years of daily headaches and some numbness and balance issues.

He heard the swoosh in my neck and asked if I heard my heartbeat which I thought was normal.

I also experienced ringing in my ears, which I too thought everyone else did too.

He ordered an MRA of the blood vessels in my neck, along with an MRI of the brain due to the headaches.

Everything came back normal and after several months the swooshing of my pulse in my ears disappeared.

It hasn't returned, but the ringing in the ears is always there along with the feeling of clogged ears.
 


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