Having Trouble Getting A Diagnosis.

[thegron]

Hey all,

I still haven't been able to secure a proper diagnosis and honestly, I'm not even sure I have POTS anymore. It could be something else that is causing similar symptoms.

I saw my neuro (not a POTS specialist) recently and he referred me to an ENT to check for any inner ear disorders. The reason being, I described to him that I often partially lose my hearing (things get quieter) when I stand (and get orthostasis) and even when I'm sitting or lying down. Often I can change the position of my head and my hearing will come back. Anyone else experience this before?

Anyhow, certain inner ear disorders (e.g., Meniere's Disease) can cause dysautonomic symptoms so it is not a bad idea to get checked out even though I don't have vertigo. These ear disorders can also have a more direct effect on cerebral blood flow (explaining my constant brain fog).

If the ENT doesn't find anything, I may just pay out of pocket to get an fMRI or SPECT scan of my brain to look for regional cerebral hypoperfusion.

So I was just wondering if any of you had any comments on this.

Also, I was on rounds the other week and one of the other medical teams had a patient who had POTS. It was so classic... No one knew what the heck to do for her and everyone was clueless. I wanted to help but legally I couldn't speak to her because she wasn't my patient. It was just interesting to see first-hand what many of you go through when you get admitted to the hospital.

-Thegron

[Guest Hanice]

R u a dr.?

[thegron]

I'm a pharmacy student training to become a clinical pharmacist (or I may go to medical school after).

Sorry, I thought most of you knew that.

[sue1234]

I have had ear problems for many years prePOTS without any firm ear diagnosis. It began with left ear ringing. I went through all the usual testing and had had an MRI. Nothing showed on the MRI, but the ENG testing said something about it possibly being "central"(I can't remember what it said, something about it could be not necessarily ear-related, but brain related??). Anyway, I did not have an acoustic neuroma, which they were looking for.

A symptom that also came with the tinnitus was nystagmus. It got to the point that I actually quit driving. It felt like I was driving "drunk", where my eyes would not stay focused.

I still have it almost 20 years later. I don't have vertigo as a rule, but have had episodes of vertigo a couple of times over those 20 years. I seem to have sensitive hearing first thing in the morning as evidence by my keeping the tv volume extra low. As the day progresses, I turn it up more and more.

The last symptom which I've never mentioned because I forget about it, is like you, my hearing can come and go(not totally) when I change position, but weirdly also as I lie on my back and breath in and out. My hearing "dims" at full inspiration.

I went to a neuroENT two years ago to point-blank ask if there could be a relation to ear issues and POTS. I had even more in-depth testing and he had no answer for me...even for the nystagmus.

[thegron]

Thanks for your response. That is unfortunate that you couldn't get a good answer for why you have those symptoms.

[HopeSprings]

Why are you unsure if you have POTS? What does autonomic testing show? We've discussed the possible connection between inner ear disorders and autonomic symptoms here before. I also started with vestibular symptoms when I was young, have high frequency hearing loss, tinnitus and constant pressure/cloggy feelings in my ears and constant off balance, foggy/spacey/drunk feeling. I did have some abnormal inner ear test results. One Doctor diagnosed borderline Meniere's, but later changed her mind. Another Doctor thought possible perilymph fistula - Doctor number #1 said no way. Another Doctor told me it was Hydrops. Most treatments I tried either made things worse or did nothing. You state so definitively that inner ear conditions cause autonomic symptoms. I've read this in research studies, but regular Doctors don't seem to know anything about this. Tell me what you know please! Also, I had the SPECT scan, (posted a link to your last post on this) and it did show hypoperfusion, but knowing this doesn't seem to lead anywhere. It was like okay, now we know this, but we don't why it's happening or what to do about it. And what do you mean about ear conditions having an effect on cerebral blood flow?

[thegron]

Hey Naomi,

I guess it is more that I don't like saying that I have POTS because that doesn't help at all. POTS is just a syndrome but can be caused by so many different things. I want to find the cause!

I haven't gotten any official autonomic testing. I'm going off of my symptoms, which are pretty classic OH symptoms.

I'll post this study that may answer some of your questions: http://news.bbc.co.uk/2/hi/health/8268336.stm

Yeah I remember seeing your SPECT results and I agree that knowing that you have hypoperfusion doesn't really help that much. BUT I could reallllly use some objective findings. I find that physicians are rarely "on my side" because they don't have anything concrete to work with (besides my symptoms which I think are pretty concrete). Also, finding out whether or not the brain fog is caused by hypoperfusion would help point me in the right direction and provide some validation for me.

[HopeSprings]

OK, that's really interesting! If you haven't seen his work and you're interested, look up work by Professor Bill Yates http://neuroyates.com/research-interests.html Goes along with what you're saying. And I completely understand about objective findings providing validation. Please let us know if you get any vestibular testing or the SPECT done. I'll be curious to know your results and what Doctors make of them.

[Guest Hanice]

I didn't know sorry. Maybe I just forgot?

[sue1234]

thegron, I bumped up a thread called "Ear Issues" that has a poll and comments. It seems lots of people here have chronic, vestibular-type issues. Would be nice if someone can find more concrete possibilities.

I had emailed that Dr. Yates a couple of years ago, as I had found his website and how he studied orthostatic issues related to vestibular problems. He did not get back with me, but that is what led to my finding a neuro otologist(which resulted in no help).

[Akgirl]

Just wanted to briefly comment that I also partially lose my hearing alot when I Stand or usually before I faint. Things get very very quite along with a bunch of other symptoms.

[Akgirl]

Sorry, also forgot to add that I was going to vestibular therapy twice a week. And it was really helping with the dizziness vertigo and a lot of the inner ear stuff. But unfortunately for me it started triggering my migraines so I had to stop. But something others could look into.

[thegron]

Hanice, no one on this forum ever has to apologize for having a bad memory hahaha!

Naomi, Thanks for the info. Yeah I'll let you know how it goes if it happens.

Sue, thanks i will definitely look at that post.

Akgirl, nice to know someone else experiences this.

[thegron]

Sue, would you mind posting a link to that thread? I can't seem to find it.

[Guest Hanice]

Hanice, no one on this forum ever has to apologize for having a bad memory hahaha!

Naomi, Thanks for the info. Yeah I'll let you know how it goes if it happens.

Sue, thanks i will definitely look at that post.

Akgirl, nice to know someone else experiences this.

Lol I know seriously! :-P worst memory ever! I guess it's all the hypoperfusion getting to me!

[Guest Alex]

One test that might give you even more validation would be a transcranial Doppler during the TTT. I posted a link to a research article about this procedure and the findings associated with POTS (let me know if you can't find it so I repost the link or bump the thread). I'm assuming you've already had a regular TTT that led to your dysautonomia diagnosis - I'm not familiar with your medical history, sorry

The reason I'm mentioning the transcranial Doppler during the TTT is that it can analyze the blood flow to the brain lying down and standing and compare the two. I don't know whether the MRI or the SPECT scan can be performed when upright.

Best of luck,

Alex

[Guest Alex]

Here is the link to the article I mentioned above

http://circ.ahajournals.org/content/104/22/2694.full.pdf+html

Cerebral Vasoconstriction in Vasovagal Syncope: Any Link With Symptoms? A Transcranial Doppler Study

[thegron]

Thanks Alex. Yes I'm familiar with the doppler studies and may do one. I've never had a TTT actually. I am convinced I have white-coat hypertension because I rarely have bad orthostatic symptoms at the doctor's office but they are bad when I leave...

So my cognitive symptoms are actually constant. It doesn't matter what I'm doing or anything. Sure, when I stand up suddenly and get that wonderful feeling of orthostasis, my cognition definitely worsens a bit but it is constant otherwise. That's why my condition is so strange. So it won't matter if I'm lying down or standing up for the scan.

You see, the thing is that my dysautonomic symptoms (the orthostatic hypo, etc.) aren't that severe compared with everyone on this forum. That's why I'm wondering if they are actually secondary to something else that's going on. My cognitive symptoms are BY FAR my worse symptoms. I could live with the orthostatic ones.

Is there anyone else here who has milder symptoms like me? I mean, besides having bad cognition, I am fairly functional. I can walk around as I please and do the things I need to do. I have tried exercising but I get headaches and feel like once again I'm losing my hearing.

[KareBear]

Thegron, have you checked your BP when your hearing diminishes? To my knowledge it is very common for hearing to fade when your BP drops so it is possible it could be due to Orthostatic Hypotension or low BP in general.

[Guest Hanice]

What is your bp like when standing? Mine used to be wacky and go down or up. Now it only goes down a little, the last reading I remember was 114/75 - 107/64

[thegron]

I've never checked my BP when my hearing diminishes. I recover from it within 10 seconds usually so it is hard to get a reading fast enough. But yes I've considered that that could be the cause. But the question is, why does it happen when I'm laying down or sitting and have no other orthostatic symptoms?

I know my regular sitting BP is around 115/75.

[Guest Hanice]

What is it usually when you stand?

[Guest Alex]

Perhaps you can find a doctor specialized in autonomic dysfunctions that can help you figure out what exactly is it you're dealing with. After I was diagnosed one of my specialists had me keep a record with my supine and standing BP and HR - I measured those several times during the day, at the same time every day (for consistency purposes) and he accepted those numbers as valid (apparently I have white coat syndrom as well). Have you considered that option? - a home version of the poor man's tilt test.

Also, despite my white coat syndrome (my normal bp is around 100-110, yet at the doctors I had readings in the 150's) and the fact that my anxiety was through the roof the day of my first TTT, my results were compelling and my BP hit a low shortly after I was tilted - some of us have that dip in the BP sooner than others, that's why the TTT lasts for 30 min sometimes - in the doctor's office nobody was ever willing to check my BP while I stood for 30 min. So until that point I wasn't able to receive the proper diagnosis.

The symptoms you're describing could be attributed or associated with a bunch of other conditions, not necessarily autonomic dysfunction. Again, in my opinion, only a trained professional can order the necessary tests to help you.

Best of luck and keep us posted.

Alex

[Guest Hanice]

Perhaps you can find a doctor specialized in autonomic dysfunctions that can help you figure out what exactly is it you're dealing with. After I was diagnosed one of my specialists had me keep a record with my supine and standing BP and HR - I measured those several times during the day, at the same time every day (for consistency purposes) and he accepted those numbers as valid (apparently I have white coat syndrom as well). Have you considered that option? - a home version of the poor man's tilt test.

Also, despite my white coat syndrome (my normal bp is around 100-110, yet at the doctors I had readings in the 150's) and the fact that my anxiety was through the roof the day of my first TTT, my results were compelling and my BP hit a low shortly after I was tilted - some of us have that dip in the BP sooner than others, that's why the TTT lasts for 30 min sometimes - in the doctor's office nobody was ever willing to check my BP while I stood for 30 min. So until that point I wasn't able to receive the proper diagnosis.

The symptoms you're describing could be attributed or associated with a bunch of other conditions, not necessarily autonomic dysfunction. Again, in my opinion, only a trained professional can order the necessary tests to help you.

Best of luck and keep us posted.

Alex

Omg I never new there was such a thing as white coat syndrome!!!! Lol I have that too! My home bp is usually ! 105 ish. Whenever I go to the doctor my bp is around 120's 130's and sometimes even 140. They always just say "your bp machine is probably off" they never said anything about WCS.. Thanks for sharing. Now I know what to say at the doctor's office.

[thegron]

Alex,

I've seen Dr. Tullo in NJ but he did not seem to believe that I was sick because when he sat me up, my BP was regular. As I mentioned earlier, I also have white-coat hypertension. But you're right, a TTT would be a better choice. I will def get one done in the near future.

Yeah that is why I'm trying to eliminate other possibilities. Because my symptom presentation is a little bit unique and I want to cover all of my bases. A diagnosis of exclusion!

Yep I'll see the ENT and I'll keep you updated if there are any findings.

P.S. I'm not sure if I've mentioned this but when this whole thing started suddenly one night after dinner... it didn't start with orthostatic symptoms or brain fog. It started with a thunderclap headache that lasted for three days! Then it died down to a milder headache that lasted for a month or two. The orthostatic symptoms/brain fog started after the really bad headache died down a bit. Makes me think of a cerebral vasospasm...

Thanks!