I hate my doctor, in tears as soon as I left his office

Physicians, Specialists, Clinics & Visits 👨‍⚕️👩‍⚕️
1

What a waste of time this appointment was. I can’t stop crying. The first time I saw this doctor (a neurotologist) in September I liked him so much, he took his time with me and really listened. He even told me I wasn’t crazy unlike the last one who told me I was a wacko. Today was my fourth and last visit with him. Never even suggested I go on verapamil. Told me he doesn’t know what to do with me, here are some exercises you can try and good luck. Shrugs his shoulders, said I’m one of those people with bad balance.

I tried to ask him some of my questions but I was brushed off. Asked him about taking the ECOG, he said no, it’s not accurate, no one uses it any more. Asked him if my caloric showed any weakenss on either side, said no.

Asked him how he can be sure I don’t have Meniere’s. He shrugged his shoulders and said he can’t. Said my kind of vertigo isn’t suggestive of vertigo. I asked him what is vertigo for Meniere’s like? He tells me one is on the floor for 24 hours vomiting. Okay, I say, I only have vertigo for 4 or so hours. If someone with Meniere’s takes valium will their vertigo last 24 hours or 4? Four, he tells me as he shrugs his shoulders. I knew I was written off as a patient as this point as he has absolutely no idea what my vertigo is like even though I told him months ago. He said I have no symptoms of Meniere’s. Well excuse me, I do have EPOSODIC SEVERE ROTATIONAL VERTIGO in which I am totally unable to move without it becoming 1000 times worse, tinnitus and ear fullness. The only thing I don’t have is the hearing loss, but I have had two eposodes where my hearing in one ear went way off for 24 hours (but had no vertigo during these times).

Tell him I constantly feel like I am going to topple over, live in fear of when the next vertigo attack will happen. Shrugs his shoulders, try these exercises.

Asked him about going back on the HCTZ. Shrugs his stupid shoulders and said I can do that. But he won’t give me a prescription for it, I have to get that my my regular doctor.

So I’m in tears, back to square one. I don’t know when my next vertigo attack will be or where I will be. I don’t know what to do, he’s the fifth doctor I’ve seen for this and in the end he turns out to be as bad as the others. There are no other neurotologists within 150 miles of me. I feel so depressed to think I have to live like this for the rest of my life.

2

This must be the day for that…i went in to see my gastro since I have been having all these problems with my digestive tract. He did an endoscope and said everything is just fine other than a hernia that he seems pretty unconcerned about. So now what do I do…

I cannot eat, my stools are not normal color, i switch from constipation to diarrhea and stomach pains, stomach spasms, muscle spasm in abdomen and stabbing pain.

I was so frustrated…we went to Kohl’s and i ended up crying in the middle of the story so we had to leave and come home. I am so sick of not having a life and no where to turn.

I asked about going to an endocrinologist but he said that might work but there are none he would recommend in this area…I am just beyond knowing what to do and where to turn next.

3

Wow, we really get some useless doctors, huh? Bookworm: I’d say you’ve encountered a doctor who shows exactly what NOT to do when one is stumped: throw your arms up and send the patient on their way. No kind words, no tests to recommend, no doctors to suggest, no medicines to try.

It might be hard initially (since you have some history with the doctor and once liked him), but I think you should put the experience behind you as best you can. Remember, just because this doctor is a twit doesn’t mean all doctors are like him. Just because he gave up doesn’t mean other doctors will. Nor should you.

By the way, your doctor is wrong on multiple levels. Hain (among others) uses ECOG – he says it has its limitations (e.g., one could have Meniere’s and not necessarily show it on the ECOG), but the idea that “no one uses it any more” is baloney. And your dr’s idea about what Meniere’s has to “look like” is a joke. He admitted he CAN’T be sure you don’t have Meniere’s, so you have to take whatever else he said about it with some skepticism. If he can’t rule it out, he should have pursued further testing!

I don’t think you’re totally back to square one, though it may seem like it. In terms of finding a good doctor for you, the situation’s gotten tougher, yes, but all’s not lost.

Perhaps one of the best-known and respected doctors (like Rauch [who’s in the Boston area], or Hain/Cherchi [Chicago]), would be willing to do a phone consult.

Suppose you decided to request a consult from Hain by phone. This is what he could likely do for you:

  • suggest/order additional testing he feels would be useful (you could have it done somewhere in your area, and have the results passed on to him)
    - help try to figure out what your problem ISN’T (e.g., rule out PLF or whatnot) – narrow the field of diagnostic ideas
  • decide on a most-likely (tentative) diagnosis and begin some treatment approaches accordingly

He doesn’t give up on patients, no matter how tough the case. In advance of the call, he’d look at any records and info you send (you can mail it). Judging by your post, I’m guessing that distance traveling is not a good option for you.

In all, I think it’s terrible the way many of your doctors have treated you. But put them behind you and find someone who won’t give up and will take you seriously. Whoever you see or talk to next, you could even say that – “I’ve had a lot of doctors give up on me or tell me I’m crazy, and I’m tired of it.”

4

Hi Book,

Sorry to hear you had such a bad time with another jerk doctor. George covered it all perfectly …

So has anyone told you that this is migraine-based? Do you not think that you might be dealing with MAV?

Hang in there … Scott

5

Ahhh what shame they are arseholes at times , no hearing loss dosent mean its not menieres ur symptoms sound like it and the vertigo lasts anywhere from 3o mins to 24 hours in most people nothing is set in stone. You know your own body better than anyone if you think thats what you have then maybe you do.
I hope you get some answers you truly need xx

6

George, thank you for your great words and acknowledging that this is another twit of a doctor and that he should have done more to try to figure out what is wrong with me. I’m glad to know it isn’t in my imagination that he was wrong.

I’m so angry that he just shruged his shoulders, said I don’t know and wished me good luck. aaarrrggghhh!!! It makes me wonder if something is terribly wrong with me because so many doctors have said they can’t help me or do they think it is all in my head? I wish I could find a doctor who takes me seriously.

Scott - re MAV - yes, this is what he originally diagnosed me with as in addition to vertigo I also suffer from extreme motion intolerance, motion sickness, light problems, photophobia during vertigo attacks, etc. My caloric was normal as was my hearing, he said I definitely don’t have Meniere’s. I guess I am the one who is questioning Meniere’s as it seems the diuretic helped me (see my other post about Meniere’s vs MAV which I posted over the weekend). He was treating me for MAV and had prescribed nortiptylene but because of the terrible insomnia I had to stop.

He wanted me out of the office so fast today, practically pushed me out, he’s walking me to the door and I’m still asking him my questions. What’s with these doctors who think just because they can’t help someone they have the right to just drop the issue as if it will go away??

I’ll take George’s advice and do my best to put him behind me and try to move on. Geesh, it’s like breaking up with a boyfriend. :slight_smile:

7

Hi Bookworm,
I am so sorry to hear of your experience. George did a nice job of laying things out so I will not reiterate.

I think you mentioned you lived in upstate NY? How far from NYC? Dr. Newman is a MAV expert, is very caring, and does not give up on his patients. I would highly recommend you see him. I think maybe if you dealt with a neurologist specializing in migraines/headaches, they would be more well versed in handling MAV and managing the meds. Plus, most neurologist in my opinion have better bedside manners than ENT’s… :lol:

All the best,
lisa

8

Grrrr! These sorts of doctors make me so angry! Are their egos so fragile that because they can’t figure out what’s wrong with you they infer that’s it’s “all in your head”? Two things - even if it IS “all in your head” (ie mental rather than physical) - who cares?? You are still sick and need medical help - you can’t just “pump up” and “get over it”. And if it IS a mental health issue (not necessarily in your case but in general) then fobbing you off is actually going to make you feel even worse rather than better. Sheesh. Second thing - it is NOT acceptable to just wash his/her hands of you and say “good luck”. If this doctor doesn’t know what’s wrong with you he/she needs to keep investigating and/or refer you on to someone else who may be able to make a diagnosis and offer appropriate treatment.

Bookworm, I am so sorry you’ve had this experience, but don’t give up. The right doctor, diagnosis and treatment is out there.

Vic

9

Lisa, I am in upstate NY, about 150 miles away. Going to NYC or Boston (180 miles) may be the next thing I have to do, though I don’t know how I will ever get there. Is he right in the city or in the outskirts? I guess I’m wondering how easy is he to get to. Buses, etc make me incredibly carsick, but driving myself in the city, well, that really scares me. I wouldn’t have a clue as to how to get around. I don’t even know if my insurance would cover something like this. I have such a headache and I feel so carsick tonight. ugh!!

Vic, thank you for your kind words. I do have a history of depression but I know the vertigo and related issues I have are not in my head. He really did leave me with a “good luck.” I wouldn’t have believed it if I didn’t hear it with my own ears.

Book

10

I know how you feel. I had a few doctors treat me that way before I found Hain. I wouldn’t let it bother you. You are not crazy, this is not in your head. That doesn’t say much about him as a doctor or as a human being. I definitely would do a consult with Hain or travel to see Newman as Lisa suggested.

I understand your fear of vertigo/dizziness. I am currently fighting that fear again. Since I had alittle flareup, (I had felt good for months), I have been thinking about it nonstop. I am actually seeing a counselor now to deal with my anxiety especially since my husbands diagnosis. I know a large part of my anxiety is worrying if I am out and mav hits. I was at the hospital all day for my hubby’s 3rd surgery today and kept thinking…what if I get vertigo…what if I have to leave…what if the elevators set if off…Needless to say I wore myself out completely and ya know what? No vertigo ever came. I was very uncomfortable and anxious the whole time.

I feel for you. You are going to be okay and will find the right doctor. I have to say, my phone consultation with Hain was great. He took the time to really listen.

You are in my prayers. Just forget about that ent, he is a joke. What goes around, comes around. Someday he will need help and will not be able to find it.

Nance

11

Hi Book,
Dr. Newman is in Manhattan. I suppose a phone consult with Hain might make more sense although I am pretty sure that insurance won’t cover that. Are there neurologists that specialist in Migraine/Headache in your area that you can consult with? That may be a good start. None of these big names docs have the magic. All you need to do is find a doc familiar in treating MAV. Where in upstate NY are you? Syracuse must have some top neurologists as I believe there is a medical school located there. Perhaps that is closer to your hometown?

All the best,
lisa

12

Hey Book,

Sorry about your disappointment with the crappy doctor. Boy do i know where your coming from. In the 17 years with this chronic illness i have had a few rude ones that thought it was all in my head. I felt bad for a few days…then i picked myself up, wiped off my hands and got back to work trying to find another doctor. Please…don’t give up…there are a few good ones out there.

I soppose you could actually make a complaint against this doctor and request to see another Neurologist…i did that once…had to write a letter explaining the situation and you know what…they let me see another doc.

Good Luck Book…

Joe

13

I’m so sorry you went through this! It makes us feel so vulnerable when we’re left “doctorless” before we’ve found a good treatment. They need to get people skill lessons at some point in medical school!

But a couple things jumped out at me in your story that might be good news:

1 - My neurolotogist referred me right away to a neurologist once he diagnosed me with migraine-associated dizziness (his preferred term). He said he doesn’t usually treat it himself. So maybe getting away from this guy at this point isn’t such a bad thing because if you have M.A.D. (as I like to call it) - or MAV, you may be better off seeing a neurologist anyway for the treatment part.

2 - Who says water pills only help Meniere’s? Women + hormones (often) = migraine troubles, and that often includes fluid retention. I know my ear fullness was the worst it’s ever been when I went on a supposedly local hormone treatment for perimenopausal symptoms “down there” that did in fact enter my system (no matter how tiny the amount is supposed to be that gets into the bloodstream, you know how sensitive we migraineurs are). Dizziness came back too after being mostly symptom-free for about 3 months on Topamax. It even caused some hearing loss - that was a new symptom. After 3 days of ear fullness (that usually only lasted a few hours when I’d had that before) plus the hearing loss, I took half of one of my husband’s HCTZ pills (he has high blood pressure) and that took care of the ear fullness and hearing problem.

So you may have M.A.D like me (it sounds like it’s possible he may have been right all along about that), he may not have been willing to do any testing that he doesn’t believe in anyway (even if others do believe in it), and since his mind is made up about your diagnosis he just may have written you off as someone he was just going to be “at war with” because he thought you were convinced you have Meniere’s. But if he was really wanting to pursue M.A.D. treatments, there are so many other options, and he should have communicated that to you! There IS hope if he really does believe you have what we have.

Maybe it’s for the best because you and he were not going to be a “good fit” - you have to have that with a doc. This is just too important. I hope you find one who will work WITH you, not against you.

(Incidentally, my neurologist has increased my Topamax so I’m now in the waiting period for this latest dose increase to “kick in.” The last time I got up to the therapeutic dose - the one that worked for me in the absence of added hormone medication - it took several weeks for it to start showing results. But it DID eventually work, so I AM hopeful that it will again!)

14

Hi again Book,

I’m sure you already know this but depression and migraine/MAV are often comorbid.

I will reiterate, even if it were depression you were suffering, a doctor pushing you out the door with a “good luck” is not going to make you “snap out of it”. Depression, like any illness, is not under the control of the person who has it. It (usually) won’t go away on it’s own, you can’t just “snap out of it” and it is a real illness, not malingering. Sorry to rant but it makes me so mad that this attitude persists. The ironic thing is that if you were suffering from depression this doctor could have prescribed you an anti depressant - many of them work for MAV!

I myself suffered from a bad depressive episode about 15 years ago. I was on Aropax (I believe also known as Paxil?) and Prothiaden (Dothep) as needed. My neurologist I now see for MAV was very keen to know if I had more/less migraines during that time (of course I can’t really remember - was not my focus at the time). The “upside” of that treatment was that I already knew that I tolerate Prothiaden well, which is what I’m on now.

Keep fighting the good fight!

Vic

15

I want to say thank you for your kind words everyone. Your support means a lot to me as does knowing I’m not the only one who has been through this. I’ll be seeing my PCP next month for my yearly physical and I’ll ask him, once again, what I should do. That is if Ican hold on until then. Meanwhile I’ll do my research and try to find another doctor. Syracuse is a good idea Lisa. It might be a little closer than NYC and most likely it is easier to get to. Also there may be something in Poughkeepsie.

I have all they symptoms of MAV and test results point to that, yet I am stumped because I seemed to be okay while on the diruretic, but it is possible that may have been coincidence. Needless to say I am back on the diuretic. I have some left over from when I was on it last year, enough to hold me over until I see my PCP. Mary Alice, you mentioned women+hormones=migraine and fluid retenetion. That is true and what I would like to believe, but at 55 yrs my hormones have kind of flattened out.

Vic, this doctor did prescribe Nortriptylene for me last visit. I was so sure it would take care of the MAV as well as work on my depression, but it gave me such bad insomnia I had to stop after a month. I was really disappointed as I had such hopes for this.

Here’s to another day - hope it’s a good one for you all!

16

One thing about MAV - it can be bizarre! I had one aura during fertility treatment 15 years ago (that was a hormone spike like I’ve probably never had before) of temporary colorblindness. I thought I’d had a stroke. I went to my eye doc for tests that of course all came out fine. I didn’t figure out what it was until just last year when I was diagnosed with MAV (or M.A.D.): I did a bunch of reading and found that it was a rare aura, but actually Oliver Sacks, the neurogist/writer, has had this one himself.

I can’t remember where I’ve read it, but I’ve come across some other info about fluid retention/congestion and migraine that’s not strictly related to hormones. For example, the runny nose a lot of us get! Ear fullness may be one of those fluid things too because a lot of people get it - I know mine sure responded to the diuretic, and I won’t hesitate to “borrow” a half of hubby’s pill again if I get that for more than a few hours again.

All of us have slightly different presentations of our migraine disease - we are unique. If you keep a diary of your symptoms and can document reduction of them with use of the diuretic, a good doc should not hesitate to prescribe it again (unless your blood pressure falls too low or some other bad side effect happens). Hope you find one who will listen, and be supportive, and work with you. You deserve it.

17

The last time I went to a neurologist she said she didn’t know what else she could do for me and left it at that. I started crying (I couldn’t help it this time). I could tell she felt really bad but at least she was admitting she didn’t know how to help. When I got home she had left me a message telling me of a vestibular therapist I should try (I think she only phoned me because I was upset). The only problem is that I don’t want to drive across the city several times a week to see a therapist.

I have found doctor’s to be very frustrating. I am not an anxious person, but everytime I see a specialist now I feel like crying. I know exactly how you feel! Why do people become doctor’s if they don’t care about the individual.

18

I guess I felt the need to speak up on this last post as I am a physician. Doctors do really care. And I understand there are some bad apples so to speak in all professions, but for the most part docs do really want to help. We really do. I think what happens is that we want to help so much and feel so frustrated when we don’t have the answers. Heck, I am a physician and I am still one of the sickest people on this board, bedridden for over two years now, with very little light. I have access to the world’s best docs and I still am struggling to find my meds that will get me out of MAV hell. Docs may detach because they don’t know what to do to help us as there are no definitive answers to this illness… that is the frustrating part. They would love to give all of us a pill and cure us… trust me. Sure, bedside manners vary, but doctors go into this profession to help people.

However, I do not think it is ever okay that if a doctor is frustrated to treat a patient in an unkind manner. That is never good doctoring. Keep searching until you find a doc that is aware of MAV and won’t give up on you until they find the med or combo of meds to get you better! All we can do.

lisa

19

Hi Book,

Sorry to hear about your experience. If you suspect Menieres have you tried the John of Ohio regimen from Menieres.org?

20

I say go for the phone consult with Hain. Even if he doesn’t end up being your doc, he’s definitely capable of steering you in a better direction. He’s pretty good at finding things other docs can’t find.

He has an excellent questionnaire patients are supposed to fill out before seeing him. It’s like 8 or 9 pages.

Here’s how phone consults work:

dizzy-doctor.com/consult.html

You can open the above mentioned questionnaire within that link.