New and Looking for Some Tips

[Curious]

Hi,
I am new here and just looking for some tips on what I can say to my Dr in an attempt to get a referral for investigation re PT.

Approx 3-4 months ago at Christmas I developed a boil in my right ear as soon as I began my Christmas leave from work. Just as the antibiotics started to take effect ( couple of days) I developed a chest infection and this was followed by PT which is in my left ear ( opposite side to the boil).
I suffer from migraine aura (no headaches), I take aspirin and use a low dose estrogen patch.
My PT is not present all the time and this is what puzzles me the most.
I mentioned it to my Dr when it first started he said it's harmless and not to worry adding that it's probably just pressure from the virus (chest infection/cold) that I'd suffered. I felt that I had wasted his time, he dismissed vascular causes saying I had 'Googleitis' ... nice eh! I havn't been back therefor not had any investigations.
Recently it seems to be getting worse but still not permanently there, it stops and starts. I have a fear of stroke and don't think I could ever consent to an investigation that risked one.
I would love to hear advice/ tips/ remedies etc as my anxiety levels are rocketing after reading online today.

 

[awbw8]

Hi @Curious! I can't say that PT or T caused by any kind of drug is really my area of expertise, but I just wanted to say hello and we're happy to have you!

I know there are a lot of great PT people here and I believe there is a section specifically for PT on the forum, you might want to try adding a thread there.

In my humble opinion, it sounds like you should find another doctor. If your PT is intermittent then it's possible it's being caused by something you can stop - you want to make sure it's nothing dangerous and it could help stop the PT from becoming more frequent.

 

[Karen]

Hi, @Curious, and welcome to Tinnitus Talk!

As a fellow PT sufferer, I read your post with great interest. Like you, my PT started (in my right ear only) after taking a drug; in my case, it was a blood pressure drug. Mine is a constant sound, in sync with my heartbeat. It never stops and never waivers. So, a couple of questions for you:

1. Did you have any hearing loss or regular tinnitus in your left ear before the PT started?
2. Have you checked the pulsation to make sure it is really in sync with your heartbeat?

There are other conditions, such as tensor tympani syndrome, which are similar to PT, but in which the pulsating may be erratic. So -- if yours is in time with your heartbeat, you probably do have pulsatile tinnitus.

Here are some suggestions, based on my experience over the last 4 years:

1. If your doctor doesn't take your condition seriously, then consider finding one who will be more receptive and understanding. Most general practitioners and ENT's don't know a lot about PT, so it might be a good idea to find a specialist in your area. You could try a neurologist, a neurotologist, or even a vascular surgeon.

2. To put your mind at ease, you might consider having the following tests done: CT scan of temporal bone area; MRI of head/neck, and you can (I found this out later) have an MRA (arteries) and MRV (veins) done at the same time. This will help to rule out any dangerous conditions, such a fistula, blood clot, tumor, etc. The test that is considered the "gold standard" of tests for those with PT (if your doctor thinks it is warranted) is an angiogram. There is a small degree of risk of stroke with this test, so it is something to consider only if your doctor feels it is necessary.

3. Are you familiar with Whooshers.com? It is a website dedicated to those of us with pulsatile tinnitus, and includes information on possible causes, and "cured whooshers" stories. There is also a list you can print out and give to your doctor, called "Top Ten Pulsatile Tinnitus Tips for Doctors". Please do check it out when you have a chance. You could go ahead and print out the Ten Tips list and give it to the next doctor you visit. It talks about what PT is, what to listen for (a "bruit"), possible causes, suggested tests, etc.

4. There is also a Whooshers Facebook group that you can join (it's a closed group) on which you can communicate with other "whooshers".

5. A condition that often causes PT is called "benign intracranial hypertension". You might want to Google it and read the symptoms, just to rule it out.

I wish you well, and hope you'll update us on how you're doing, if you decide to go to another doctor for evaluation. In the meantime, please don't worry! Most cases of PT are not dangerous, and some are highly curable, if a cause can be found. The main thing right now is to stay calm (easier said than done!), try to get some sleep, and don't let it get to you. All will be well!

Best wishes and hugs,
Karen

 

[Curious]

Hi @Curious! I can't say that PT or T caused by any kind of drug is really my area of expertise, but I just wanted to say hello and we're happy to have you!

I know there are a lot of great PT people here and I believe there is a section specifically for PT on the forum, you might want to try adding a thread there.

In my humble opinion, it sounds like you should find another doctor. If your PT is intermittent then it's possible it's being caused by something you can stop - you want to make sure it's nothing dangerous and it could help stop the PT from becoming more frequent.

Hi awbw8,
Thanks for taking the time to respond. You'r right I'll make an appointment with a different Dr at the surgery ASAP.. It's just I feel I'm making a nuisance of my self, I had an MRI brain about a year ago for migraines along with lots of blood tests.. I might get back in touch with the neurologist who repor. I let you know how I get on.

Hi, @Curious, and welcome to Tinnitus Talk!

As a fellow PT sufferer, I read your post with great interest. Like you, my PT started (in my right ear only) after taking a drug; in my case, it was a blood pressure drug. Mine is a constant sound, in sync with my heartbeat. It never stops and never waivers. So, a couple of questions for you:

1. Did you have any hearing loss or regular tinnitus in your left ear before the PT started?
2. Have you checked the pulsation to make sure it is really in sync with your heartbeat?

There are other conditions, such as tensor tympani syndrome, which are similar to PT, but in which the pulsating may be erratic. So -- if yours is in time with your heartbeat, you probably do have pulsatile tinnitus.

Here are some suggestions, based on my experience over the last 4 years:

1. If your doctor doesn't take your condition seriously, then consider finding one who will be more receptive and understanding. Most general practitioners and ENT's don't know a lot about PT, so it might be a good idea to find a specialist in your area. You could try a neurologist, a neurotologist, or even a vascular surgeon.

2. To put your mind at ease, you might consider having the following tests done: CT scan of temporal bone area; MRI of head/neck, and you can (I found this out later) have an MRA (arteries) and MRV (veins) done at the same time. This will help to rule out any dangerous conditions, such a fistula, blood clot, tumor, etc. The test that is considered the "gold standard" of tests for those with PT (if your doctor thinks it is warranted) is an angiogram. There is a small degree of risk of stroke with this test, so it is something to consider only if your doctor feels it is necessary.

3. Are you familiar with Whooshers? It is a website dedicated to those of us with pulsatile tinnitus, and includes information on possible causes, and "cured whooshers" stories. There is also a list you can print out and give to your doctor, called "Top Ten Pulsatile Tinnitus Tips for Doctors". Please do check it out when you have a chance. You could go ahead and print out the Ten Tips list and give it to the next doctor you visit. It talks about what PT is, what to listen for (a "bruit"), possible causes, suggested tests, etc.

4. There is also a Whooshers Facebook group that you can join (it's a closed group) on which you can communicate with other "whooshers".

5. A condition that often causes PT is called "benign intracranial hypertension". You might want to Google it and read the symptoms, just to rule it out.

I wish you well, and hope you'll update us on how you're doing, if you decide to go to another doctor for evaluation. In the meantime, please don't worry! Most cases of PT are not dangerous, and some are highly curable, if a cause can be found. The main thing right now is to stay calm (easier said than done!), try to get some sleep, and don't let it get to you. All will be well!

Best wishes and hugs,
Karen

Hi Karen,
No I didn't have any hearing loss or tinnitus but now you come to mention it I have slight ringing now in the left as well as the slight, faint PT which is in sync with pulse.
I had PT about 16 years ago after having a baby but I can't remember how long it lasted and I suffered from ringing tinnitus & dizziness for about 4 months about 10 years ago. Dr treated this as Menniers??but I was later told that it wasn't as no hearing loss.
Thanks for all the info. I'll check out the resources and get a 2nd opinion ASAP and will let you know what's said. It's great being in touch with someone who has experienced it.. Thanks.

 

[Curious]

Just popping up to let you know that I saw my doctor, he checked my ears and said the left drum is dull and didn't move when blowing out (pinching nose) took my BP and listened to carotids and jugular and said he has no concerns re vascular cause. He backed this up saying I was low risk as no family history of cardiac/stroke, I'm a non smoker with an average BMI. I think he sensed my anxiety and realised I wasn't reassured by what he was saying so he's referred me for an ENT assessment but asked me to try a steroid nasal spray and antihistamine for congestion (maybe sinus involvement) in the meantime.
Will keep you posted how this goes.. Fingers crossed.
I must have a look around the forums properly as only checked in on phone.