I visited with Jeffrey Brown, he is listed on this forum under Top Docs for Mav.
He is a Neurologist/Neurtologist that specializes in dizziness.
Well after reviewing all my chart notes, examination and talking with me. He doesn’t believe that I have MAV.
He ordered 3 tests. CFS pressure test, Table tilt test and a new ECOG test. He feels a little iffy about the hydrops.
Very nice, and very knowledgeable. I would recommend him.
He also has the nicest office staff, I have ever come across.
He is leaning towards my heart being the culperate. Hopefully I will get these test done quickly.
Just thought I would pass along the info for anyone needing a new doc in the Northwest.
How does he feel it is heart related, did he give you any indication of what it may be? Do you also have a cardiologist referral? Let us know when your tests are scheduled-hope they can get you in quickly so you can get some answers.
I am also wondering why he thinks it is heart related??
Let us know how the tests go and what you find out.
Tilt table testing is usually done based on symptoms which are usually presyncope or syncope. Many people also relate that they have dizziness. Tilt table testing is done to see if you have a significant drop in BP or syncope during the exam. Possible diagnoses related to it would be dysautonomia, orthostatic hypotension/intolerance, or neurally mediated hypotension.
I am curious to know if you have ever passed out or what your symptoms specifically are?
Have you had any heart related symptoms before? I know they think (thought) you had POTS. Have you seen the cardio yet? Was your EKG normal?
BTW, I did the orthostatics myself and they seemed to be normal but my Neuro is going to check just to be sure.
Good luck, I’ll be thinking about you!
When I got this my neuro thought it was heart related too… A PFO… Basically thought I might hVe a hole in my heart. Turns out I do but do dies about 25% of the population. There was a study about PFO and migraine… They did a double blind study to see if people got better after having the hole closed. I think the results were inconclusive.
I still wonder about it…
My symptoms are constant dizziness. Worse when laying down. Better in the car, and feel great when walking on the treadmill.
Feel a sensation of swaying and a very slight rocking. Never passed out. Feel lightheaded now and then.
Thinks its more heart related do to the fact I have tachycardia. My heart speeds up when I go from a laying to a standing position.
Most hearts do speed up, but mine is faster than it should be.
I also have bicuspid aortic valve. Which just means that I have 2 chambers, when your supposed to have 3. I will need to do a valve replacement
surgey in about 15-20 yrs.
The tilt table test measures heart rate and blood pressure when put in different positions. “postural”. Testing for POTS. I had a test done last week and the NP said that seems I may have a mild case of it, but not enough to treat. Neuro says, everyone is different, and he noticed the tachycardia just in the exam we were doing. Tilt Test will confirm the dx of POTS. Pots has very similar symptoms as Mav. Some med’s are the same, but different doses. I do have a cardiologist. Actually more like 3. They say patients that have POTS are usually dx with mav first. A symptom of POTS is headache, and migraine. Dizziness, ear stuff… along list. But you have to have the hallmark symptom to have POTS and that is tachycardia. Usually at least a jump of 30 per min. Or above 120.
He was leaning towards the heart, but also checking CSF pressure. Not a spinal tap, an MRI that tests the pressure in neck and head… ( I think he is doing neck and head) Something about making sure that the pressure is flowing properly and its not to fast to slow or being held up for any reason. As I have had 2 cervical surgery’s. Following up with another ECOG just to see. As alot of ECOG’s show a false positive. I read that ECOG’s are not that great for dx of hydrops. Even the T hain website says something in that nature.
Remember, he believes in MAV. Just doesn’t think I have it.
I never really thought I did either. As most on this sight have hard time driving and walking and feel better laying down. While Im the exact opposite.
I know, everyone is different… but just never seemed right to me.
We will see. Thanks for the comments, I will let you know. Im doing the MRI for CSF this week and dont have the others scheduled yet.
This is interesting I actually think I have a heart problem I had an ECG n that came back normal but I still want further tests, I hope I don’t have a heart related problem.
Thanks for sharing this
Dont worry. My EKG and heart tests have always been normal with the exception of finding my aortic valve 5yrs ago.
Having Pots has nothing to do with heart disease. The only thing POTS has to do with is the heart beat per minute.
Having POTS does not mean that you have heart disease, nor does it increase your chances. I know it seems odd, like if my heart
is beating irrgegular that should mean something bad, well not always. That is why pots is often not dx properly. Its not everyday
that you have a doctor monitor your rate rate while laying then standing. I just happen to have one on 4 months ago when I was
seeing a chiropractic neurologist trying to figure out my headache. He noticed it. BTW headache was due to bulging disk, and surgery corrected it.
wow…good luck to you…sounds like he is getting to the root of the matter. I hope it all turns out good & you can get some answers.
I know the treatment for POTS and NMH have some similarities and some differences than with that of MAV. (I work in a cardiac unit, specifically where we do studies on your hearts conduction, including tilt studies) I know the doctor I work with recommends liberal salt intake, which in migraine world is very bad! I am curious though to know how they distinguish which pts need cardiac f/u and which don’t. When I saw ENT he said we probably needed to rule this out, but when I went to neuro he didn’t think the same. My son was also diagnosed with a biscuspid aortic valve. The cardiologist doesn’t think this will become an issue (if at all) til about his 6th decade of life.
Cardiac follow up is only when you the hallmark symptom of Pots which is tachycardia. Above 30bpm or over 120 standing.
Bicuspid aortic valve- nothing you can do to hurt it, nothing you can do to help it. Has nothing to do with any of this, I just stated it,
as to explain why I had cardiologist in the first place. ENT’s do not deal with heart stuff. Neurologist and Cardiologist are related on several levels.
I saw Prof Phil Cremer in Sydney for migraine associated vertigo and secondary hydrops. (I have both).
I have seen lots of docs over the years who were clueless.
Prof Cremer was great. He really helped me.
He is in Sydney, and his website is www.vertigoandneurology.com.au
After years of getting nowhere, I would definitely recommend him for vertigo treatment.
Thanks kristina, I’m going doctors 2moz to get referred again to see my ENT as my dizziness has got bad again, I hope he does some test this time
Got a new ECOG today and NO hydrops.