I went for the Celexa. Gonna start with 5mg and work my way up. Also got Valium as needed. How long should I stick with the 5 mg? Is it cool to take in the morning?
Awalker,
Iâll post the summaries to your tests and Balohâs report for you to add your own comments to on Monday. I will have to print them out and block out your name manually as the PDFs are scanned images.
Something you should pay attention to after reading Rauchâs response. You had direction changing nystagmus in the Dix-Hallpike â a central finding, and you have shown a deficit by the caloric â a peripheral finding. This is not clustering of symptoms and is highly suggestive of MAV. Furthermore your hearing is fine as is your VOR as shown by the head impulse test. These results suggest no permanent vestibular damage has occurred.
S
Which head impulse test are you referring to?
â Begin quote from âawalkerphoenixâ
Which head impulse test are you referring to?
â End quote
Itâs right there in the report from Baloh. He must have done this on you. Itâs a very standard test.
âHead impulse testing shows normal vestibulo-ocular reflexes.â
From Dr Jones: Videonystagmography did not reveal an acute contributing or etiological vestibular (inner ear) cause. Although a reduced vestibular response of 71% on the right was elicited, no supportive peripheral findings were associated.
S
Letâs not be selective hereâŚthe other two tests show multiple abnormalities. Baloh shook ny head twice, as the three rounds of tests used machines and trained technicians. I will point these out later when i have results with me.
Hi,
Havenât been around for a while⌠Things have calmed down a lot for me in last few weeks but just scanned thru this post and wanted to add my short bit:
Visual problems were my first real big symptom. Floaters and photosensitivity. Then my vision seemed too strong for 2 years. Docs thought I was mad as did opticians. I then developed scintillating scotoma. 2 yrs later, I got the big bang vertigo day. And ever since then I was chronically dizzy. They said it was vn. Then that it was chronic migraine. I landed up with mav. I was hesitant to accept but it makes sense. Migraine is your brain having a problem processing sensory stimulation- visual stimulation counts.
Iv followed the migraine diet since may 2011. Iv followed it to dr s standards ie no dairy no egg no yeast extract no lemon juice no life etc ! Since oct 2011. Iv tried scoffing chocolate and seeing what happens- nothing. Iv tried other bits- nothing.
So it doesnât have to b like that. Also my dizzyness isnât episodic. Neither r any other symptoms. Theyâre constant.
I know your anxious- hell anyone would be. But my advise is that as hard as it is, when you stop analysing everything, stop expecting yourself to follow the same steps other people have, stop looking for answers, and stop worrying that a drug is going to b bad for u (bcos trust me iv been there and u end up with a self fulfilling prophecy)⌠Only once I chilled out and stopped analysing, and obsessing, did this thing calm down.
Itâs hard. Il prob feel worse tomo but hey!
Also I read on another forum u talking about mornings being hard- I hear ya. I feel hungover every morning it is hell. Nobody gets it, think Iâm whinging, moaning. But I think itâs all a mav thing
Hard part of accepting mav is knowing thereâs no quick one pill cures all.
Time heals tho. Till then, Iâm sorry ur suffering ESP the visual shit.
Ps heal your headache book confirmed mav in my mind- u read that? Not the trigger part but other sections
Also, I read u have ear crackles etc- same here.
Balohâs report here:
http://www.mvertigo.org/articles/baloh_report.pdf
Other doctors here:
Iâve been following this discussion with great interest, trying to keep an open mind. But having read all these reports I have to say they scream out to me very loudly: migraine.
Brenda
Scott, if you are going to post my test results, as a courtesy to me, please repost them in their entirety with ll of the tests and their findngs. Also post the test from the Ear Institute in itâs entirety.
Notice how the first test says no peripheral findings, but they second does.
Regarding the Baloh report, there are a few inaccuracies. Believe what you want, but I have no reason to make these things up:
I never had a true vertigo spell as he describes, just the quick spins. Nothing ever lasted longer than 20 seconds. I never had trouble walking or rolling over and trouble with any kind of head positions.
He mentions the fogginess that would come and go. It was always constant. Never in the last two years has that cleared up. Not even for a second.
He mentions that I had daily headaches which was untrue. I would get pressure in and around my head, like wearing a hat that was too tight. I have had headaches before, obviously, and some really bad ones after nights of drinking, but this was not the same. Not even close. It was just pressure, you know, from being unbalanced all day. Many VN sufferers complain about this at the start of their attack. This cleared up after about 4 or 5 months and has not returned.
When he talks about aura, I have absolutely no idea why he used that word. I never once had any kind of aura whatsoever before seeing him that day. No floaters, no Scheererâs and no scotoma. I have no reason to lie about this, this is just 100% incorrect. I have no idea what he heard from me. Perhaps he was referring to the afterimages thing I have had since this all started. That was the only visual thing I ever had until my first scotoma about 6 months after I met with him. Other people with VN have had the afterimages. Although migraine can maybe explain it, it is not a definite symptom of one. I supplied you a picture of the after-images I have.
No idea what he means about the tremors thing.
My mother does get migraines. Maybe once every 6 weeks or so. Hers are classic, where her head hurts and she needs to lay in the dark and sleep. I have never had one like this.
I can still not walk tandem without difficulty, so not sure why he added that. I think he only had me take about 3 steps in his small office. My balance has improved with VRT, but still a bit off.
He mentions I had about 10 brief vertigo spells in two years leading up to see him. Again, false. The first quick spins I ever had were about 7 months before I saw him. The spins lasted 20 seconds with no other symptoms. Didnât have another one until 6 months later when I started to feel a bug and tremble in my right (affected) ear. I saw him about 3 months after this.
He talks about crackling tinnitus in both ears. Again, no idea where he got this. I had the crunching noise when I swallowed, and this was because an ENT convinced me to do the vasalva maneuver over and over again to pop my ears. I am pretty sure I ruptured something in my ear or E Tube doing this. I have never complained about tinnitus.
He mentions dizziness with light, sound and movement is 100% false. Loud noises were uncomfortable and annoying, but never caused dizziness. Same with light. I felt more confused by all the stimulation outside in the sun, but again this is common with most any vestibular disorder (I pointed this out in that PDF I put on MVertigo as well as VEDA website points this out). I also never had motion sensitivity. Never once in my life. Now that I understand how the eyes and head movements are affected by dysfunction I realize I might have said that turning my head in uncomfortable or troubling, but it NEVER caused dizziness. This is text book for why VRT starts with doing head turns. This, again, has improved with VRT.
He mentions that a quarter of those with migraine will have reduced calorics. This could very well be true, I have no idea. but 73% possibly 91%? Come on⌠How is that possible??? That would mean that somehow a migraine caused that much damage. I have never read that anywhere and I have been researching VN and labs for almost 2 years now.
Again the head thrust test being negative - no way in hell. There have been separate head thrust tests by other doctors who all confirmed I did have this. Back then I couldnât keep my eyes fixed on a target if I had a gun to my head.
Otherwise, I am on my meds now and will be staying off the boards for awhile. Scott, please repost all three tests.
Thanks
Awalker,
The rest of the reports are just test results with graphs etc which I doubt anyone will understand and amount to 12 MB of data. The summary pages, or the doctorsâ interpretation was what I posted. Which tests do you want posted? Most, apart from the caloric, appear to be normal but I didnât go through them blow by blow and not sure what that will add to what the doctors already said.
S
On Doctor 2 you left off the 4th page with her assessments. It shows my abnormal peripheral.
On Doctor 1 you didnât show any of the test results which show multiple abnormalities.
The test you did not post shows my calorics as well as nystagmus.
My main point is that if a doctor were to review me, they would look at everything. Not just what the doctor wrote. The graphs and notes would be beneficial to someone who knows how to read them.
The doctor for the âDoctor 1â PDF knew so little about condition he told me to just take Mucinex D. He wrote that no peripheral findings were found, but if you read through the test, all pages, Asymmetry, vertical and horizontal phase, hypofunction, positional and dix hallpike. He even says on one of the pages âVNG indicates peripheral vestibular involvementâŚ"
You donât have to include every single graph, but all of the notes and findings can tell more of the story. You will see that doctor from Doctor 1 PDF contradicts himself in his own reports, you just have to read the rest of it. I am willing for you to use my test results in order to help, but you need show everything, not just pages that point toward ONLY migraines. Please.
Thank you.
Instead of posting 12 MB of data which no one will download, let alone get through, can you name the exact page numbers that you think are relevant?
Thanks
Sure, on the Doctor 1, pages 2, 12 and 13
Page 4 on Doctor 2
If someone like Dr. Rauch would be interested in my case, I assume heâd like to see all of the graphs and doctor notes. For the layman on here, they would not understand. I just feel that in order to get the full story, someone with professional expertise should see everything.
I didnât have to download it, it takes me to a webpage.
Thanks
Awalker,
Iâm not sure thereâs any benefit in me or anyone else responding to you as you seem absolutely determined to discount 95% of everything we and your many doctors say as soon as the âmigraineâ word is used. What is it you want from this board? We are a bunch of lay people with migraine. We have told you our opinion on your results - you are not happy with our opinions and continue to disagree with us. Really, please, what is it you want from us?? I donât know if you are trying to convince us, your doctors or yourself that migraine is not your issue and that the main cause is VN. We believe it is CLEARLY migraine based on your descriptions, the doctorsâ notes, your response to meds and our own knowledge and experience of migraine and other vestibular disorders.
I donât think you will listen but Iâll put it out there anyway.
Tinnitus - itâs not just a high pitched screech. It can be crackling, whoosing, humming, roaring.
Headache - is not just head pain. That sense of pressure you get (which I get too by the way - feels like my brain is expanding and my skull is shrinking) - thatâs a headache.
Your motherâs migraines - She getâs the traditional symptoms. You donât. You both have migraine. How the symptoms present is irrelevant to the diagnosis.
Aura - is not just scintilling scotoma. Itâs any change in perception - that includes sights, sounds, smells, tingling and mood. Mood includes depth perception, confusion, derealisation, anxiety, panic, nervousness.
Dizziness - a very broad term covering everything from discomfort through to disequilibream, unsteadiness and vertigo. Itâs a subjective thing and the term captures a lot of experiences.
Are these thing more likely to be migraine or VN? It SCREAMS migraine to me, everyone on this board and Baloh. Baloh is one of the worldâs leading experts in dizzy disorders. But possibly he is wrong. Possibly we are all wrong and you are right.
What I think is happening is that your anxiety over all this is seriously hampering your ability to think clearly and without prejudice about your illness. You canât seem to accept that migraine could account for your protracted misery. Many of us have struggled with the same thing. I know I certainly have. But itâs a road block to you getting well. You need to get your anxiety under control in order to look at your own health objectively.
Have you looked into CBT like I recommended?
Victoria,
Itâs not too much to ask that all of my tests be there. I was nice enough to offer them up, so all I am asking is for it all to be there. My beliefs are my own. Iâve lived with this and seen all the doctors personally. I am not arguing, just wanted everything to be presented, more so for doctors, not for people who self diagnose over the internet.
I wrote a post shortly before Victoria did and my phone erased it⌠But it basically said the same thing, only much shorter and not really as sympathetic. :?
You seem to be directing your frustration with your symptoms/illness, at the guys here who are only trying to help after you asked them to. Youâre in danger of them telling you to f-off if you keep being so rude. Actually, theyâre all so damn nice round here they probably wonât tell you to f-off, but Iâd be inclined to.
These guys have done nothing except try to advise and help you. It seems youâve made your mind up on VN and nothing even one of the top Drs in the US says, will change it. I really hope you have a change of heart, take a step back and are able to get on top of the anxiety. For me it made about a 80% difference, I hope it does for you too.
I never had a true vertigo spell as he describes, just the quick spins. Nothing ever lasted longer than 20 seconds. I never had trouble walking or rolling over and trouble with any kind of head positions.
If you admit to never having true vertigo, how can you believe you have VN? The ONLY symptom of acute VN is true vertigo (and often nausea as a result), and it usually lasts a few days. So to sum things up, Baloh misunderstood you and thought you had an actual vertigo attack, and he STILL didnt think you had VN. So how could you possibly of not had a true vertigo attack and had VN? See the logic here?
Your caloric did show a deficit, but as Baloh stated, and as Rauch stated, this can be explained by migraine. But the most important thing of all, your test results were suggested of central involvement, not ear involvement.
Alright, Scott, forget about it. I will keep to myself for the time being. Thanks for all the help guys.
Scott, I will keep in touch via email.
â Begin quote from âawalkerphoenixâ
Victoria,
Itâs not too much to ask that all of my tests be there. I was nice enough to offer them up, so all I am asking is for it all to be there. My beliefs are my own. Iâve lived with this and seen all the doctors personally. I am not arguing, just wanted everything to be presented, more so for doctors, not for people who self diagnose over the internet.
â End quote
Yes, it is too much. Scott explained to you about the bandwidth. While the cost is not high this forum does cost the admins money to run, which they pay for out of their own pockets.
You were âniceâ enough to offer up your test results? What, so we can all continue to volunteer our time, free of charge to review your copious notes to help you out only to have you keep telling us we are wrong?
You want these notes uploaded to be presented here for doctors? Do you think Rauch and others spend their time reading this forum so they can diagnose and treat people over the internet, for free?
Just to clarify. This forum is not a place where you can post your doctorsâ notes and have world class specialists check them out and give you a free diagnosis, although Scott has VERY kindly corresponded with Dr Rauch on your behalf who has VERY generously responded. For free. I donât think you appreciate how much time and effort has been put, for free, in helping you out. I know you are unwell. We ALL are, that is why we are ALL here. We help each other out. In your case it has been all one way and you come back at us, with a whole lot of attitude and tell us we are wrong and arenât doing enough for you.
Sheesh. Stick a fork in meâŚ