Hi,I just wanted to give you a brief overview of my situation and ask for your advice. My PT (subjective) started in Jan/Feb with a bad sinus infection and otitis media. Since then I've had an MRI, MRV, MRA, CT scan, and everything else under the sun. All normal. The thought of having a vascular condition that could just kill me or cause a stroke out of the blue is absolutely terrifying. Despite this, I've pretty much given up and got used to my PT. The only option left is an angiogram, yet given the dangers associated with it, I really dont know if its worth it. I also find it hard to believe that it could be something like an DVT etc, based on the fact that it began during an ear infection. Have any of your guy's pt start after an ear infection? If so, did any of you get a diagnosis? Also, I would appreciate you're opinon on getting an angiogram. I'm at a crossroads between acceptance or taking the next, potentially dangerous, step. Some advice would be great. Thanks for your time
6+ Months Pulsating. Help Needed!
- Thread starter adamj
- Start date
ManagerHi, Adamj,
Like you, I have PT (I've had it for over four years now), and have had about the same tests that you've had, with no diagnosis. I've been living with mine, too, and maybe it's my imagination, but mine seems to have gotten calmer recently.
A question: Have you been to more than one doctor, to get a second, or third, opinion of your scans? On Whooshers.com, it is often suggested that PT sufferers circulate copies of their scans to more than one doctor, to see if something that was missed by one doctor could be found by another.
However, like you, I find it hard to believe that you could have some kind of physical obstruction when your PT was caused by an ear infection. Perhaps you could get the opinions of some people who have had an angiogram, to see how it affected them, before you make a final decision.
Is there anyone out there who has had an angiogram who would like to offer an opinion?
Like you, I have PT (I've had it for over four years now), and have had about the same tests that you've had, with no diagnosis. I've been living with mine, too, and maybe it's my imagination, but mine seems to have gotten calmer recently.
A question: Have you been to more than one doctor, to get a second, or third, opinion of your scans? On Whooshers.com, it is often suggested that PT sufferers circulate copies of their scans to more than one doctor, to see if something that was missed by one doctor could be found by another.
However, like you, I find it hard to believe that you could have some kind of physical obstruction when your PT was caused by an ear infection. Perhaps you could get the opinions of some people who have had an angiogram, to see how it affected them, before you make a final decision.
Is there anyone out there who has had an angiogram who would like to offer an opinion?
MemberHi @adamj
I have PT due ear infection ! Mine isn't to bad NOW( in the beginning i was in a very very bad shape emotionally ),but bothers me sometimes . I had all the exams you had plus angiogram . Everything came fine. Honestly i don't think you will find much doing angiogram once everything was fine w the others exams. Took my exams to the best doctor in NYC Dr Shapiro at NYU. He's a very nice and professional doctor . We spent an hour looking into my exams on the screen . Also my pt sounds more like a car alarm than whooshing.
@Karen congratulations for always being very kind and helpful!
Rog
I have PT due ear infection ! Mine isn't to bad NOW( in the beginning i was in a very very bad shape emotionally ),but bothers me sometimes . I had all the exams you had plus angiogram . Everything came fine. Honestly i don't think you will find much doing angiogram once everything was fine w the others exams. Took my exams to the best doctor in NYC Dr Shapiro at NYU. He's a very nice and professional doctor . We spent an hour looking into my exams on the screen . Also my pt sounds more like a car alarm than whooshing.
@Karen congratulations for always being very kind and helpful!
Rog
Hi Adamj.I also have PT.and also have all the same scans you had.mine is also subjective.i saw several specialist including Dr Shapiro.who like Rog says is excellent.only dr Shapiro recommended I go for the angiogram.i have decided against that for now. it just seems like such a longshot to me that an angiogram will find anything especially when the Pt is subjective like yours and mine.i agree with Karen.get a second opinion on your scans before getting such an invasive test.for a fee Dr Shapiro will even look over your scans if you were able mail him copies.well good luck with things the rest of the way. billy43
Hi @Karen . If haven't done the angiogram it would bug me . So decided to get it done . You know we try EVERYTHING and ANYTHING that could possibly help us with tinnitus . But after the angiogram done I don't think it was much of a help once I already had a lot of test/exams done. So I don't think he will find anything in the angiogram .
How a manage my PT? Family , God and girlfriend .
How a manage my PT? Family , God and girlfriend .
Hi, @Rog,
I certainly understand, and agree with you, about trying anything and everything to find a cause or cure for our PT. It's too bad they didn't find anything, and you went to one of the best doctors around, who understands what PT is all about.
I'm glad you're able to manage your PT so well. Thank goodness for God and understanding loved ones! Where would we be without them? If you have any other coping tips, please share them here.
I've found that, in addition to faith and family, getting enough sleep helps, along with remaining calm (not letting it get you upset), and taking magnesium to stay calm and grounded.
How about other PT sufferers? How do you cope with your PT?
I certainly understand, and agree with you, about trying anything and everything to find a cause or cure for our PT. It's too bad they didn't find anything, and you went to one of the best doctors around, who understands what PT is all about.
I'm glad you're able to manage your PT so well. Thank goodness for God and understanding loved ones! Where would we be without them? If you have any other coping tips, please share them here.
I've found that, in addition to faith and family, getting enough sleep helps, along with remaining calm (not letting it get you upset), and taking magnesium to stay calm and grounded.
How about other PT sufferers? How do you cope with your PT?
I think the worst part for me is just the not knowing. Although my PT (which is a long "whoosh") is pretty bad and apparent, I would be fine with living with knowing it was nothing serious. Thank you Karen and others for your advice and suggestions. Although I am seeing highly acclaimed neurotologist (not neurologist) at USC in Los Angeles, I still think it may be a good idea to shop around my tests.
Hi Karen, adamj, Rog and Billy43, I have had this PT for more than 6 months. It started after a whiplash-injury. It is extremely loud and always present. Each moment of my life. I also was about to have an invasive angiogram, but in the very last moment I canceled the appointment. Before, I hat MRA/MRI/CT-native and Doppler. All perfect.
My question: I heard their is a very special CT of the temporal bone. (Hope, that is the right translation). As I already had those exams above, do you think it is worth to add this special exam? Shouldn't they have seen everything on the MRI/MRA/CT-native? I am not sure about it. What is your experience
I would really love to hear from you how you get along with this nasty condition. Because I have problems to manage anyhow. I am full of panic and fear.
Another point: Do you thing that the PT is comparable with regular tinnitus? Regarding treatment and habitation. (My worst case scenario is, that it might had been an objective tinnitus due to the whiplash in the very beginning, but then - in the course of months - it changed to the "normal" auditory-paths-neuronal-story. That would be dreadful, because I fear I get never used to that pulsating hissing.)
I am sorry for my poor English. I am from Germany. Hope you can understand what I was going to ask.
A big hug specially for you, Karen, and best wishes to all of you,
Catherine
My question: I heard their is a very special CT of the temporal bone. (Hope, that is the right translation). As I already had those exams above, do you think it is worth to add this special exam? Shouldn't they have seen everything on the MRI/MRA/CT-native? I am not sure about it. What is your experience
I would really love to hear from you how you get along with this nasty condition. Because I have problems to manage anyhow. I am full of panic and fear.
Another point: Do you thing that the PT is comparable with regular tinnitus? Regarding treatment and habitation. (My worst case scenario is, that it might had been an objective tinnitus due to the whiplash in the very beginning, but then - in the course of months - it changed to the "normal" auditory-paths-neuronal-story. That would be dreadful, because I fear I get never used to that pulsating hissing.)
I am sorry for my poor English. I am from Germany. Hope you can understand what I was going to ask.
A big hug specially for you, Karen, and best wishes to all of you,
Catherine
hi Cathrine.sorry to hear that your PT is causing you so much distress.in regards to CT of the temporal bone.im not sure if that is the same as what you already had with your CT -native.Karen may know more on that,my PT is a pulsating hissing just like yours.best I can tell you is at the six month mark I was still doing terrible and felt like it was gonna be that way forever.but im doing much better at 13 months.i just try to stay as busy as possible and try to keep a positive attitude which obviously is not easy.one other positive post I saw was from Dr Nagler,who has treated a good amount of PT patients.he stated that PT patients have the same success rate with TRT therapy as those with regular tinnitus. also your PT was the result of whiplash injury so as time goes on it should get quieter or hopefully resolve on its own.ok good luck with things and hope you start to feel better. billy 43
Hi, @Cathrine, and welcome!
We're glad you've joined us on this forum, but I'm so sorry you're suffering with this condition. I'm glad to hear that the results of your tests were all negative; that is good news that there is probably nothing dangerous going on.
A CT of the temporal bone is used to determine whether or not there is a dehiscence (hope I spelled that correctly), or wearing away, of the bone. People who suffer from superior canal dehiscence have a variety of symptoms, one of which is pulsatile tinnitus. This condition can be corrected by surgically repairing the hole in the bone.
Here's some more information about this condition:
http://www.hopkinsmedicine.org/otolaryngology/research/vestibular/recent_findings.html
If you think that this test might be beneficial for you, you might want to ask your doctor about it.
I've had just about the same tests you've had, plus the CT scan of temporal bone, and all were clear. I have not had an angiogram, and like you, I am not sure I want to have one.
It is difficult to live with PT and regular tinnitus; my pulsating tinnitus sounds like a drum sometimes, and my tinnitus is a high-pitched hissing sound. Is yours like that, too? I've had this condition for almost 4 1/2 years, and the way I have been coping with it is to distract myself as much as possible, and stay busy. That is one of the best ways to habituate to the condition. Also, some natural supplements have helped me, such as magnesium, B vitamins, holy basil, and pharma GABA. Anything you can do to keep yourself calm, and keep your blood pressure/pulse under control really helps.
I wish you well, and am glad you've joined us. I'd like to know if you do decide to have the CT scan of the temporal bone, and what your results are.
Best wishes and hugs,
Karen
We're glad you've joined us on this forum, but I'm so sorry you're suffering with this condition. I'm glad to hear that the results of your tests were all negative; that is good news that there is probably nothing dangerous going on.
A CT of the temporal bone is used to determine whether or not there is a dehiscence (hope I spelled that correctly), or wearing away, of the bone. People who suffer from superior canal dehiscence have a variety of symptoms, one of which is pulsatile tinnitus. This condition can be corrected by surgically repairing the hole in the bone.
Here's some more information about this condition:
http://www.hopkinsmedicine.org/otolaryngology/research/vestibular/recent_findings.html
If you think that this test might be beneficial for you, you might want to ask your doctor about it.
I've had just about the same tests you've had, plus the CT scan of temporal bone, and all were clear. I have not had an angiogram, and like you, I am not sure I want to have one.
It is difficult to live with PT and regular tinnitus; my pulsating tinnitus sounds like a drum sometimes, and my tinnitus is a high-pitched hissing sound. Is yours like that, too? I've had this condition for almost 4 1/2 years, and the way I have been coping with it is to distract myself as much as possible, and stay busy. That is one of the best ways to habituate to the condition. Also, some natural supplements have helped me, such as magnesium, B vitamins, holy basil, and pharma GABA. Anything you can do to keep yourself calm, and keep your blood pressure/pulse under control really helps.
I wish you well, and am glad you've joined us. I'd like to know if you do decide to have the CT scan of the temporal bone, and what your results are.
Best wishes and hugs,
Karen
Hi, @adamj
I took an angiogram and the doctor told me that he intends to take it with me awake, in order to take "still" pictures. While taking the pictures he told me to stop breathing.
I am not familiar with the dangers of an angiogram, if you want, please tell me about that.
All I want to say that maybe it's better to take an angio-MRI, cause an angiogram, let me tell you, was one of the most horrible things I went through, and after that I was staggering, I had very high Tinnitus, and I was given a diagnosis of intracranial hypertension, but not proper treatment for that.
If you are awake during an angiogram, the iodine dye they release in your neck/brain burns like sulfuric acid (I was told that I will have a "hot' sensation, but the truth is that you have a chemical burn sensation.
The solution goes also into your eye bulb, enlarges it's volume and I had the sensation that my eye will explode!!!!!!
One of the most difficult experiences in my life, with absolutely no benefits)
Although I was given in the aftermath the diagnostic of "intracranial hypertension", they didn't prescribe me the treatment indicated in those cases, that cause the production of lower quantitities of cerebro-spinal fluid, but other medicines that aren't linked with hypertension, but that was only my case, maybe if your case the doctors, if they see something, they will prescribe you proper treatment.
Angiogram while awake was the most challenging things I had to go trough, only to be given mocking treatment.
Maybe an angio-MRI is better, they fix your head somehow and maybe the solution in that case doesn't burn and maybe you don't have to be awake.
Just wanted to help.
I took an angiogram and the doctor told me that he intends to take it with me awake, in order to take "still" pictures. While taking the pictures he told me to stop breathing.
I am not familiar with the dangers of an angiogram, if you want, please tell me about that.
All I want to say that maybe it's better to take an angio-MRI, cause an angiogram, let me tell you, was one of the most horrible things I went through, and after that I was staggering, I had very high Tinnitus, and I was given a diagnosis of intracranial hypertension, but not proper treatment for that.
If you are awake during an angiogram, the iodine dye they release in your neck/brain burns like sulfuric acid (I was told that I will have a "hot' sensation, but the truth is that you have a chemical burn sensation.
The solution goes also into your eye bulb, enlarges it's volume and I had the sensation that my eye will explode!!!!!!
One of the most difficult experiences in my life, with absolutely no benefits)
Although I was given in the aftermath the diagnostic of "intracranial hypertension", they didn't prescribe me the treatment indicated in those cases, that cause the production of lower quantitities of cerebro-spinal fluid, but other medicines that aren't linked with hypertension, but that was only my case, maybe if your case the doctors, if they see something, they will prescribe you proper treatment.
Angiogram while awake was the most challenging things I had to go trough, only to be given mocking treatment.
Maybe an angio-MRI is better, they fix your head somehow and maybe the solution in that case doesn't burn and maybe you don't have to be awake.
Just wanted to help.
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