I Have Recurring Nocturnal Pulsatile Tinnitus

[deb54]

Hello all... I've have recurring PT since 2008, after a tooth blew up during an Mri.. Yep it can happen.
The PT only occurs after I've been asleep about 2 hrs. It never occurs during the day. At the beginning the sound was that of loud machinery but changed when it was discovered I had a severe b12 deficiency and started treatment. It actually was silent for months. B12 relaxes muscles and I'd hoped this was the end of it.

I have psoriatic arthritis as well as spinal stenosis, both which cause pain and tightening of my neck and shoulders. I was a very active person until the arthritis, farming, building houses, landscaping, even stone carving. My life is limited now. If I strain my neck, even though I don't feel it during an activity such as brushing my hair, looking up or down for a long time, the PT will show up soon. It may not be the night of the activity but it will occur.

Since it occurs at night, it's never been herad by any of my docs. It's considered subjective. I've never had the buzzing, ringing, chirping kind of tinnitus.

Seems simple enough to figure out ( don't do anything to make my neck angry with me) except that it's changed in the past yr. The machine crashing now is a simple pulsing sound, still frightening but better. The bigger problem is I now wake with my head and body pulsing with that sound. My head feels as though it will explode. I feel pulsing pressure all the way to my mid abdomen, stomach. As I shift my head, which is supposed to stay in a form to keep it in place, the sound softens and dies away. This always causes extreme thirst. There is cracking in the back of my right ear, though the sound seems to come from both.

I have a neuro, primary and ENT, have had dopplars of my neck, a heart workup, MRI. Thank goodness that one didn't blow up another tooth.

I've seen my Ent recently for a new thyroid problem that showed up 7 months ago. I failed to tell him of my PT changes. Thinking this might be something I need to report.

There it is, my story. Does anyone have anything close to this presentation of PT? any ideas, suggestions?

deb54...

 

[Karen]

Hi, Deb,
I have subjective pulsatile tinnitus, too, in my right ear only. I thought I was the only one who experienced that feeling of the head and body pulsating, too, while lying down! I've had the pulsating for almost 3 years now, and, if it helps you feel any better, my body pulsating has finally gone away, thank goodness!

They say that thyroid problems and pulsating may somehow be related. I am hypothyroid, and have been for many years (taking Synthroid keeps it under control). I suspect that the thyroid may make us more vulnerable to having this pulsating, due to increased blood flow or turbulence in the neck area. At least, that's what I've read.

Are you taking any supplements or drugs at this time? I am currently taking magnesium chloride tablets (have been for about a year or so), and I think that is what finally calmed down my body pulsating problem.

I'm still going to doctors, too, to find out more about this problem and what to do about it. Yes, I do think you should tell your doctor about the pulsating when you go back to see your ENT.

Welcome to Tinnitus Talk; if I can be of further help or support, please let me know!

 

[deb54]

Karen..So sorry you have the pulsing going on but, wow, glad you shared your experience.

Since I have psoriatic arthritis, Hashimoto's T is most likely what's going on with me. I'm still at a wait and see as my labs are all in the normal range. I spent a lifetime of having no iodine in my diet. The larger than normal thyroid decided to have a fit, causing my thyroid to change shape. I also have several small cycsts.

I'm on a liquid sublingual Methylcobalamin for the b12 deficiency, which has caused a bit calcium/potassium/magnesium problems. I have had several small bowel obstructioin surgeries, with resections, so I have a malabsorption disorder also. My other problems can't be addresed with meds or supplements due to the risk of obstruction. As long as my doctors can keep me alive, food is the best recourse.

My PT may easily be right sided, but after 5 yrs, I still can't tell. I'm so freaked when it happens.

Does yours seem to happen after an especially hard day, one where you worked hard or were extra tired? Mine happens when I relax so much that my head falls into a wrong position or my neck is in pain and tight. If I manage to keep the head in it's pillow form, all is good. I also have a sinus pressure feeling only in my right ear...definately. I hear very well and ears are checked twice a yr. No sinus problems. No tmj, no crimpled arteries or veins show on MRI.

I am going to study up on magnesium...sounds quite reasonable, especially since my b12 supplement improved the PT until my thyroid had a fit.

Thanks again...
deb54...

 

[Karen]

Hi, Deb,
The truth is, I have pulsating 24/7 -- all day and all night. But, yes, it is much more noticeable at night, when I'm lying down. Sleep has been very difficult for me, and now that my body has stopped pulsating, it has gotten a little bit easier.

Yes, having a hard day makes my pulsating seem much worse, like my whole head is vibrating. Mine sounds more like a steady drumbeat than a whoosh, but they call us "whooshers" (those of us with PT), so I guess that makes sense!

Will be interested to hear if you find out that you do have Hashimoto's. That and your other issues could be what is triggering the pulsating. Please keep in touch!

 

[deb54]

Mine often sounds like a drumbeat. So terrible for you to have this 24/7. That's what has my docs so confused...mine is random, couple days on, only at night, then good for a week, then it happens again, couple, 3 days..then nothing...for 5 yrs. With the b12 problem healing up, I had 4 months of quiet and calm , then slowly started up again.

Heading to bed..praying the drums and machines are quiet tonight.
deb54...

 

[Roger Cloutier]

Mine often sounds like a drumbeat. So terrible for you to have this 24/7. That's what has my docs so confused...mine is random, couple days on, only at night, then good for a week, then it happens again, couple, 3 days..then nothing...for 5 yrs. With the b12 problem healing up, I had 4 months of quiet and calm , then slowly started up again.

Heading to bed..praying the drums and machines are quiet tonight.
deb54...

Like you folks, I have PT as well, at least that's what I believe I have. Been to a few professionals, including a vascular surgeon lately, just had a CT/angio-scan, and the bad news is that I'm okay, meaning of course, they couldn't find anything lurking in my arteries or veins.

My PT is particularly bad right now, and has been for about 2 weeks now. I am still at a loss as to what makes the symptoms better or worse. I am a musician who plays sax, in a Afro-beat band, lots of Djembes or African drums. Before that I tried playing tenor sax in a big band as well as singing in a choir. I thought these activities would make my PT worse, but they didn't, as a matter of fact they helped me habituate to the tinnitus. While doing these activities I was distracted and did not pay attention to my tinnitus. This is part of the answer, namely being distracted away, or not so focused on your tinnitus all the time. Easier said than done.

I have had PT for practically 2 years, seen my symptoms increase and decrease, but I can mostly say, that I have them most of the time. They consist of a whooshing sound, and a low roaring sound, sometimes I get clicks, all in my right ear. The low roaring sound, moves around in my head while the whooshing sound came about 4 months after the roaring, and was first introduced with clicking sounds. I thought it was my ear coming alive, because of the sound therapy (sic) that I had been listening to at the time.

I have had a number of tests, including an MRI, CT/angio gram, and had my Carotoid arteries listened to as well, I forget the term, anyways, it seems that the only thing left for me to do, is to find some kind of distraction and keep on keeping on, as if it isn't there. This seems to have an effect.

I don't want to go on about all the other trials I've had, but I sure wish that I can return to that place of about a week ago, when I felt totally normal, no anxiety and didn't notice the tinnitus. Perhaps it was the immersion in music and other activities that helped.

Roger, from Canada

 

[Rainey]

Hello guys,
I just signed up today and I realize these posts are a couple years old but I would still like to follow up because what is being described here is so similar to what I am experiencing. I had a high pitch tinnitus in my left ear for about 20 years and a diagnosed subjective pulsatile tinnitus on my right ear started to join in in November of 2014. Right around the same time I experienced the "old" already existing tinnitus getting louder as well.
I did my rounds with the docs and anything serious was excluded, got my ears cleaned out etc. I am pretty much at the end of my rope with that.
The PT usually only occurs when I lay down and goes away when I rise out of bed. Although I have noticed it a few times also when sitting up, but that is very rare. I do get Headaches a lot, not sure if they are tension headaches or Migraines and when I have a headache my whole head and sometimes upper body is pulsating together with my ear. Pretty creepy. Also, I have hypothyroidism and very low blood pressure upon getting up in the morning (90/60).
So, there it is... I suspected it to be linked to any of these symptoms described before but am not sure anymore. There is no pattern to the occurrence. Sometimes the thumping is there every single night starting around 3/4 am waking me up. Some nights it's quite.
Oh and did I mention insomnia?
There is no rhyme or reason, it seems. I am starting to believe that it is mental/anxiety and maybe could be controlled from that end?
PLEASE. Does anybody have a similar experience and would like to share?
Until then...

 

[Karen]

Hi, @Rainey,

I have had a similar experience to yours, except that my PT is with me all day and all night. I can certainly relate to your comments about your whole upper body pulsating, because I had the same experience for quite awhile. The pulsating body finally went away (not sure why), but I do still have the T and PT 24/7. One thing that seemed to help with the body pulsation feeling was magnesium. After I had been taking magnesium chloride tablets for awhile, I noticed that the body pulsating had gotten less, and finally disappeared. I take two tablets (600 mg per tablet) magnesium chloride at night, about 1 hour before bedtime. It really does seem to help with calming.

Like you, I had regular tinnitus for about 25 years before my PT started. I can pretty much pinpoint when mine started, though, because it was shortly after I started taking blood pressure meds for the first time. Over these past five years, I have gotten myself off the blood pressure meds, and control my blood pressure with exercise, diet, and natural supplements. But the pulsating still remains.

Oh, and another thing: I too am hypothyroid. From what I've read, those of us with hypothyroidism may be more prone to having tinnitus (and who knows, maybe we're more prone to pulsatile tinnitus, as well).

I've had a lot of tests, too, and have never found a cause for my subjective pulsatile tinnitus. Lately, I've given up on trying to find a specific cause, and have been doing my best to live with it. I've found that keeping busy and distracted has really helped.

Thank you for sharing your experience, and I'm really glad you've joined us!

Please keep me posted on how you're doing.

Best wishes,
Karen

 

[deb54]

Rainy, Yes, I still have the PT only at night. I don't have it nearly as often as I did when I first posted. It has always stopped when I sit up. The difference is that my thyroid has reduced in size and 3 of the 4 nodules are gone. I was iodine deficient, which has been remedied. I'm not hypothyroid. I do suspect the nodules may have played a part in the pulsing.

I've had another round of MRIs and MRAs as a recheck on the PT episodes. Everything looked normal.

My BP is normal to low. I've checked it before rising from an episode of PT and found it to be normal. All the head and upper body pounding I feel doesn't seem to affect my BP.

Too little or too much methylcobalamin, b12 supplement can cause the pulsing to occur. Lifting my arms over my head to work, clip bushes, clean cabinets, ect, is also a trigger. Heavy lifting also increases the PT episodes.

My enodo checked out my glucose standing because after waking with PT, I usually needed to to to the bathroom and then drink a couple bottles of water. She thought my blood sugar was dropping too low. I now eat 3-4 bites of meat with a pickle slice. I believe that also helped.

I do not have any trouble falling asleep or staying asleep. Even when PT wakes me, I'm asleep again within 30 minutes, often sooner if I've caught the attack early.

I generally wake from a vivid dream when I have a PT episode. Normal nights, no PT, I remember my dreams as boring.

I do not believe PT is an anxiety or mental issue.

Headaches. Mine are cervical, from the neck pressure. PT will wake me, I sit up, there's the headache. This head pain will stay on until noon or so into the next day, depending on how long the PT episode went on before it woke me.

I've been told I need surgery on my neck at levels c 5-6 and c 6-7 I have a bone spur mess that needs to come out.
Still dragging my feet on this. It could lessen the PT or it could make it worse.

Magnesium. With increased therapy lamp use for vit d and treatment of psoriasis, my magnesium is often too low. Low magnesium can cause extrememly tight muscles. I started using Magnegel, a topical magnesium. I put a small amount on my shoulders when I feel tight. This helps unless I use too much or put it too close to my neck. It then loosens the muscles too much, allowing my neck to relax into the position that I think causes the PT.

The magnesium brought me to a reasonable answer for my PT. I now believe the pulsing, is due to a slight crimp in an artery or spinal cord from the neck to brain. It passes by the ear drum and makes the heart beat sounds, the thumping, whatever. Spinal fluid also flows into and out of the brain at all times. When we lay down, it slows. If the spinal cord is slightly crimped that spinal fluid can slow even more, possibly causing too much pressure. Sitting up would allow the natural flow to resume, either blood flow or spinal fluid.

My neurologist and Endo said this could easily be the reason. They also said since it wakes me, that it's not dangerous. Ha...easy to say when it's not happening. Both doctors told me to sleep with my head elevated, which I do. I also prop my head so it doesn't slide around during the night. I only have the PT, now, when my neck is crooked, head has come out of the pillow bracing. Over extending, head thrown back while sleeping, also can bring on an episode.

Hope some of what I've reported helps you, Rainy. Keep us posted.

Best wishes, Karen.

deb