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You just described the past 13 years of my life


#1

Wow you just described the last 13 years of my life! I’m 38 this started when I was 25. I’ve had just about every test that can be given by countless neurologists and ENTs. I don’t want to make this a 400 page explanation so I’m going with the parts and pieces, when this started I just got back from my honeymoon within a month found out the wife was pregnant (damn that fertility goddess in Cozumel) LoL… Three months later new house next month new car, 3 months later baby was born. This started about 5 months into the pregnancy. Started as completely off balance, like on a boat no true vertigo, felt like I couldn’t walk a straight line, doctor, must have a viral something (antibiotics) two weeks later off balance, anxiety, stress and completely freaking out, doctor, (sympathetic pregnancy pains) my ASS!!! Couple weeks later ENT, audiologist, 49% broken left inner ear with low frequency hearing loss, Meniere’s disease. Take the Valium and meclizine you will be fine, hahahaha, really the way I feel I’m going to be fine huh!!! I took the Mec, felt worse like I was being pulled or pushed down to the ground, the Valium stopped ALL symptoms THANK YOU BABY JESUS!!! Well not for long all symptoms are back plus ringing in the ear, not long lived! ENT let’s see a neurologist, ok you don’t have Meniere’s disease, you have migraine variants. Ok so then I can be helped maybe cured right doc :smiley: oh no dumbass we don’t know anything about migraine thanks these pills. Now I’m in Chicago at Hain which was a huge disappointment for me (Hain) within 3 minutes of hearing my story you have migraine Associated vertigo, take this 120mg of Verapamil, have a nice day! The very next day I tried this the very next day I thought I was going to die couldn’t walk thought I was going to pass out. Done with him!!! Started working out regularly nothing crazy light cardio and light muscle tone, almost all symptoms gone until I pinched something in my neck, horrible 2 months but did stop again. Fast forward 1 year started new job that makes it completely impossible to get in the gym, 6 months later symptoms are back with a vengeance!!! Fast forward 5 more years I am starting to get very scared that I’m going to have to not work or walk anymore. I’ve never fallen down and only had true spinning vertigo 1 time and I believe it was an anxiety attack. The problem feels like it’s in the center of my brain. Oh ya I recently went to vestibular rehab what a joke!!! Doctor, we can’t help you since your only dizzy when you have migraine variants. WHAT??? Not to mention the 50 migraine preventative meds I’ve tried the 1000s upon 1000s of dollars for doctors and the stress on my life. I’m currently in hell trying more meds and trying to get in shape again but not helping yet. I’ve recently read about a link between allergies and migraine and Meniere’s disease, couldn’t hurt for you to try that route. By the way Hains people tested my inner ear and hearing and it was all normal so the Meniere’s disease was ruled out. I’ve also read how now they believe all these problems could be inter linked. Feel free to ask any questions I hope I can help. Also sleep apnea can cause some neurological issues, just a thought. Good luck


Perilymph Fistula? MAV? Stress/Anxiety? Looking for opinons
#2

Wow Walter quite the story there. Are you currently taking any meds ? I am glad working out helped at least in the past. Did you try simple SSRI even they had 0 effect?


#3

That was the quick story if I list all the previous meds it would be twice as long! I’ve read MAV sufferers are more touchy to medication and I’ve had bad side effects to all meds I’ve tried the 1 that actually stopped the off balance (metroprolol) made my feet swell up horrible. I’m actually trying effexor again starting tomorrow. It’s gotten so bad within the past month I’m dying to try anything! But other than that one I’ve tried amitriptyline and celexa odd feelings from both. Im up for trying anything now. I need some relief!!!


#4

Effexor has been a godsend for me. Hope it works for you.


#5

Thanks GetBetter in praying it helps!


#6

GetBetter I noticed you spoke of Hain also are you in the Chicago area? I’m originally from Chi but moved to Northwest Indiana.


#7

No I am in California. I will be seeing Hain in July. We reference Hain’s website often here.


#8

Oh ok I’ve seen both him and Cherchi in that office. Makes sense what they say just didn’t seem interested in my problem. I was reading some of your other topics and the Meclizine seems to work great but only for like an hour or 2 for me, I am prescribed four 25mg a day but antihistamines dry out your eyes for me anyway worse that they do any good and sometimes when one starts wearing off it makes the off balance even worse.


#9

Help me here. You are Male and your wife got pregnant and shortly afterwards you got MAV. That’s a first as we see women get MAV during pregnancy or after child birth.

Are all your vestibular tests normal , done in Hain clinic?


#10

Yes I’m male and it was about the middle of her pregnancy, I had the vestibular tests done in Hains office 2nd his testing came back that I have a small caloric weakness in the left ear but not bad enough to cause the problems that I have. I had all the tests including the rotational chair. Also in vestibular rehab they do a number of different testing and I’m in normal range even when I was in a room with the walls and floor moving. I am a very small percentage 5% of men with this but that’s the luck I have.


#11

The fact that your dizziness came on during a stressful period and no medical cause can be found would point me to stress/anxiety disorder being a possible culprit. Don’t take this wrong, but I’m 8 years into recovery from stress/anxiety disorder and your story has a lot of the hallmarks. (From the timeline, to even the presentation and wording.) This isn’t to say your symptoms aren’t real, they are. But their genesis may be worth exploring.

Are you seeking treatment psychologically?

It’s done wonders for me. I’ve had a few setbacks, including this one with this lifting injury(?).
But if I can get clerance that this isn’t a medical issue, I’m going to treat it as stress related dizziness and get back on with life. It’ll go away when its ready if that’s the case.


#12

Yes thenukes I’m currently seeing a psychiatrist, the neurologist says migraine the psychiatrist says stress, I do believe with the small damage in my ear and the stress it has alot to do with it but then again im one of the lucky aura migraine people I see snowflakes on car lights at night and I hope I spell this right but scotoma every now and again. I think the anxiety makes the migraine worse and more constant, I just started a Prednisone cycle to try and break this bout and going to start a preventative tomorrow so I’m keeping my fingers crossed and my Valium in my pocket. LoL


#13

I’ve had some aural migraines. Tons of headaches of all kinds. Hundreds of symptoms, and I’m not exaggerating. It may be thousands. Ranging from scary to annoy to debilitating. All of the were born from stress and anxiety. I had a friend in a support grop for panic disorder who went through cancer recovery who said anxiety disorder was worse and it wasn’t close for her.

Never, ever underestimate what stress, fear and an unsettled mind can do… particualrly when you may not recognize any of those as a primary cause. We’re quick to assume that we HAVE anxiety because our head hurts, but slow to graps that our head may hurt becuase of stress/anxiety.

Again, this is why I’m treading lightly with questions about PLF… though admittedly it’s probably responsible of me at this point to look into it before I do anything strenuous. (LIfting, etc.)

Good luck.


#14

Yes im in the same boat, I’ve had symptoms that are just crazy and unexplainable. It has come to the point where I can’t feel that I’m having anxiety you know the racing and shaking that you get in the early stages.


#15

Yep.

Most of us have some disorder level of anxiety. SOME of us have true disorder level. All of which can be unlearned and changed.

90% of people won’t want to recognize this in themselves though. It’s easier to chase around symptoms playing wack-a-mole and blaming this week’s symptom… as opposed to our underlying propensity to worry, tendency to take on stress, create stress and other built-in personality patterns like people-pleasing, perfectionism, etc.

I have friends who overcame all physical issues by addressing the psychological only.

I have an aunt who has chased down vague, various physical chronic issues in her body for her whole life… and refuses to think it could be strss/psychology based. She’s never found peace. She countinues symptom-hunting.

I highly suggest, just my opinion here… but based on your words, cadence, the extreme language you use to describe every situation (NIGHTMARE! CRAZY! VENGEANCE! GOING TO DIE!! … everything is huge/dramatic.) … that you wil be best served addressing all of your problems as being psychological in nature… and addressing anxiety/stress. You could look into John Sarno’s work. You could check Jim Folk at anxiety center and his programs. There are many.

Just my opinion. But I improved my life quality by 80% by stopping the symptom chasing and starting at the core. This isn’t to say we don’t have real disease. Humans can and do. But based on what I’m reading here, I think you can make huge strides and I’m glad you’re seeing someone to help you.


#16

Thank you, Bryan for bringing in this perspective. I’ve found thru mindfulness I can often reduce the level of my symptoms. There are unquestionably underlying medical issues, but my reaction to them makes a huge difference. Sometimes just thru mindfulness I can bring suffering down to annoyance. Exercise has also been a godsend. Our reaction, particularly with respect to our perspective, makes a massive difference in how we feel in the moment and overall. Just yesterday my friend Vigs (@GetBetter), who is very wise, told me any of us can turn Heaven into Hell and Hell into Heaven. Pain is mandatory; suffering isn’t. Stepping outside ourselves and giving ourselves a wider perspective in a non-judgemental way is at least as important a skill as any drug we can take.

Emily


#17

I didn’t realize that you were going to see Dr. Hain. Can’t wait to hear how it goes!


#18

My sister lives in Illinois. Hence clubbed the visit with Dr.Hain.

I dread the rotary chair test he wants me to do :frowning:


#19

:grimacing:


#20

Do. Not. Eat. Beforehand.