Dr. Bernstein appointment

I saw Dr. Bernstein yesterday. This is how the appointment went:
She did a lot of listening throughout the appointment (which was over 1 hour). I explained all my symptoms, and she was extremely empathic. She seemed to genuinely feel horrible for me and my situation. I feel thankful for her kindness, but was sad after relaying my whole story and the realization of how disabled I am. She spoke to me a great deal about taking advantage of any helpful services (home health aid, etc. ) for me. Again, I was thankful for her suggestions and support, but just so sad about the reality of my situation. After I relayed my story, she indicated that she is surprised that I wasn’t crying. I guess she thought my situation was quite grim. Later in the appointment, she asked if I was happy about anything, like having a baby, and I broke down, because I am just no happy about anything.

She suggested that I get another MRI (I already had 2) after the baby is born. Of course, this made me uneasy, as I begin to worry that it is something more serious. She didn’t indicate that she thought it was serious, but said that she is obsessive or neurotic with checking things. Forget her words. I keep on thinking back to Bucholz appointment, and his discussion of what a waste all these tests are when migraine is so clear.

Just a reminder that Dr. Rauch referred me to her, who said that he would like to put me on Nortriptyline for sure. when I asked about treatment, she wasn’t so decisive. She said that she is going to think about things and we’ll email each other. She did say that she sees pts like us, and has given neurontin in the past. She said that she doesn’t use Nortriptyline and doesn’t even use Verapamil. I get the pic that she treats a lot of regular headaches and uses abortives much more than these preventives. She did say that she’ll speak to Rauch since he referred me and they are not on the same page w. meds.

She then spoke about going for VRT, even though RAuch said it wouldn’t help. She said it cannot hurt and will give me something to do.

She also said that she is going to speak to this colleague, Rami Burstein, about some nerve block work that he does and see if that would work for me. I’m sure that’s more for pain. here’s some sites I found on it:
thebostonchannel.com/bethisr … etail.html

thebostonchannel.com/bethisr … etail.html

I’m feeling VERY said this morning. Was up almost all night in tears. I just feel so very hopeless, and frustrated by the difference in docs opinions and the reality of how grim my situation is. btw - she also said that she never uses SSRIs. But, again, I get the feeling that she might not use many preventives as options. she also mentioned the potential of lyrica

Lisa,

First of all I am so sorry that you are feeling so very hopeless about your circumstance. I know this has been very difficult for you and especially being pregnant now and not being able to try and additional medications.

Did she talk about the lifestyle changes she talks about in her book at all while you were there? Did she seem to think any of this spiral you are in could be caused from your hormones? Did she seem to think that once the baby is born that things could or would improve given the ability to then treat you? Do you think she treats many patients with MAV? Did she give you any suggestions as far as what to do daily to try and help your symptoms until after you give birth.

It is very hard to know what is right and what is wrong when you have many of the experts in the field who all seem to be on a different page as far as treatment is concerned. What to do and who to listen to. I guess everyone has to decide for themselves which is the best route to take as it seems to me based on conversations here that they all use different treatment options.

Do you feel like you gained anything from seeing her or do you at least feel like she is someone with whom you clicked. Sometimes I think the doctor we trust the most is the one with whom we are going to feel most comfortable.

I am really so sorry you are having such a rough time but I just hope for better days ahead for you. You are in my thoughts and prayers.

Hi Lisa,

I am too very sad for you that the appointment didn’t give you the confidence that you will get better, but I truly believe that you will. This is based on all of the wonderful people here who have seen at least some relief under various treatment plans. It really is frustrating when all of the Drs vary so differently in their treatment regimes. I wouldn’t worry much about the MRI, if anything it will give you peace of mind when it comes back all good. I actually am having another one this Friday too (I have an arachnoid cyst that they want to keep an eye on, although they have told me that it has nothing to do with my MAV symptoms).

I would definitely follow up with her and ask if perhaps after the baby is born you may be able to expect some improvement from the hormonal shift that will occur. At the very least, get her to work up a treatment plan that you can begin as soon as you give birth. I think George is currently trying nuerontin and someone else has spoken about lyrica before. I am hoping that it will be only a matter of time and finding the right med to get you back to enjoying your life!

Wishing you the best.

Ben

Hi Lisa

Although we all know there is no magic bullet with MAV, I was rather hoping, as I’m sure you were, that Dr Bernstein might have said or suggested something which gave you real hope of things being better in the future. I’m so sorry it didn’t turn out quite like that. But I’d take great heart if I were you she said she’s going to think about things and keep in touch with you via email. You don’t know what might come of that Lisa. Perhaps through future communication with her, something might just fall into place and be of help to you. And to have such a respected migraine doctor on your case so to speak has to be a plus, no?

But of course I understand your present sadness and huge desire to be free to live NOW and I feel so choked every time I read of how bad you feel and wish I could wave that magic wand we all wish we had. But I’m certain Lisa that one day it WILL be your time, and you WILL get better. Life has a way of surprising us sometimes. I hope it’s that way for you.

Sending you a hug and lots of love,

Brenda

I can always count on all of you for such great support. I appreciate all the kind words.

Brenda - That is a great point, thanks. It cannot hurt to be in contact with Dr. Bernstein. she was such a kind doctor, and maybe she’ll consult with colleagues, etc. you’re right

Ben - Yes, I will definitely be in touch with her, and curious to hear what she and Dr. Rauch have to say. My gut has just been telling me that I need something very potent like Nortriptyline to knock this out. I think I feel this way, as I keep in touch with a lovely women (who shared all my symptoms) and is doing so great on that drug. but, who knows?

Timeless - thanks for your kind words, as always. I didn’t get the impression that she had any clear treatment protocol for MAV pts. I didn’t ask many of those ques as the answers are in her book, and at this point I have learned that there are just no direct answers for this. she didn’t mention much about pregnancy. She said you never know what will happen after the pregnancy - but I’m not holding my breath. In terms of lifestyle, I strongly feel like the only thing that will bring me on the road to recover is the right med. Of course, lifestyle is important too in addition to that. But, it’s not going to help me as a sole treatment.

Hi Lisa,
Just got home to read about your appointment and like all the others, I was hoping for some positive clue, some secret that she shared with you that was gonna make it all better… I am so sorry you feel so sad and helpless.I am suprised you didn’t cry right from the start, I always have with everyone from doctors to dentists, even when I have a massage. you are so strong and brave.
I think that we , in this situation , have so much hanging in limbo that an appointment like this feels such a huge thing, maybe we hope for to much…I know when I finally met my UK doctor I felt euphoric afterwards , but then had like an adrenalin drop after that when I realized that I was still feeling dreadful , still dizzy and that nothing had changed.It is a let down when everything depends on one hour of consultation.

I do think that she sounds very sympathetic and caring , which apart from anything else is rare. She gave you plenty of time and listened rather than treating you just like another patient the same as all the rest. I know all doctors should be like this, but we all know that the reality is sometimes very different. It sounds as if she has taken your case to heart and will try to think about the next move.

It is always a worry when I hear doctors that are not into the meds I am taking as it raises doubts, I guess we have to believe in who we feel most comfortable with and follow that path. My doctor explained that I would get better ,and be able to live without meds forever , but that without meds my body just couldn’t get over this hurdle. I guess that made sense for me at the time. None of us know if we are doing the right thing or not taking any meds.
For now this is not an option for you now so this will be something you can explore and decide about after your baby is born.
In the meantime you have built another expert and professional contact , and I know it doesn’t seem enough , but you are doing all that you can.I had your kind of situation only for a few months, I know how terrifying and hideous it is, it must seem endless for you.

Please take care, my thoughts are always with you.

Penny

Penny,

Your message was so kind and thoughtful. Everything you said makes a great deal of sense. I put so much weight into these appts, and am usually disappointed. I have also had positive appts, and like you said I feel very upbeat at first, but that doesn’t last too long. I’m so sorry - I forget. ARe you on medication now? If so, what? Thanks again for your extremely kind message. I can’t wait until this horrendous experience ends for all of us, and we can have a great life.

Lisa

Hi Lisa, yes I am still doing 20 mg of Norti … trying to get an answer from my doc re whether to be happy I am a lot better a lot of the time and stay with 20 , or whether to go for 30 in the hopes it kicks all of the MAV left in me, on the ass … but worried about the SEs if I go higher.
I still feel like it is always there gently disturbing me… I know, I should be satisfied, and I hope you get to that point soon , but I would SO love to feel normal again !

Have you ever looked at Dizzy Times ?..www.dizzytimes.com
I guess you have a lot of time on your hands, it is a great site with lots of Dizzies…there is a MAV area , and a general question forum, both of which I find useful. Just in case there is something or someone there who can add to your advice , if you do not already know the site.
By the way , I would start the vrt just in case, it made me slightly worse at the start which I guess you don’t want to risk, but maybe helping me, hard to tell.
I am always open to anything that may help.

Take care,
Penny

Hi Penny,

Yes, now I remember. If I am remembering now correctly, it took you a few months to feel effects. I was on nori, but only on 20mg for 10 days. I can’t wait to give it another go. will most probably go with Nori. heard so many success stories about it. I have looked at the MAV board on dizzytimes, but I felt like the people on this site are more informed and I didn’t always agree with what the moderator said. So, I ended up looking more at our site. I peak at the other every now and again though.

btw - it is very understandable that you would want to feel even better. Of course!! Dr. Rauch told me that most people don’t feel better until 30-50mg so that’s so positive that you are feeling results from 20mg. With an increase in meds, I bet you’ll do any better once your body adjusts. I know someone that felt better and better with each increase after her body adjusted for about 10 days. I know side effects can be rough. keep us posted,

Lisa

Hi Lisa,

I understand very well, as does everyone on this board, the horrible feeling of hopelessness and helplessness we can all feel with this schitfull condition, especially when it is so relentless (there’s a lot of lessness in there…).

Dr Bernstein sounds like a lovely woman - empathetic and a great listener. I got the sense, from what you wrote about the consultation:

*After I relayed my story, she indicated that she is surprised that I wasn’t crying. I guess she thought my situation was quite grim. Later in the appointment, she asked if I was happy about anything, like having a baby, and I broke down, because I am just no happy about anything. *

that she may have been considering that you also have a clinical level of depression. What do you think? Given that MAV is firing off all sorts of in the brain as well as a very rational emotional response to how awful it all is I think that could well be the case. As such I’m kind of surprised that she didn’t prescribe an SSRI. I know you’ve been concerned about this because of your pregnancy but maybe it’s worth reconsidering?

Hang in there!
Victoria

Hi Victoria,

I displayed and verbalized that I was depressed during the appointment. however, she said that she does not use SSRIs for MAV, as it wouldn’t help. HATE how everyone has different opinions. You raise a good point, though. At this point, I’ve waited this long. I’m 6 mos along tomorrow. I might as well wait a few more months, and by then will certainly decide which drug to proceed with. I am leaning toward nortriptyline, but we’ll see. Dr. Bernstein said that she doesn’t like the side effects of Nori, but I think it might take such a drug to help me. Just my gut.

Thanks for your support and understanding.

Lisa

Hey Lisa

Without sounding negative, if I was in your shoes I would really be pissed off too. While an emotionally sympathetic response is good ( a lot of Drs dont have it), it really provides you with no solid plan of where to go moving forward. I would have left the appt too like you said (ive been there too) thinking ‘’ Great - now what’'. From your posts and you current mental state,i think having a doctor lay down a plan of recovery would really help you see some direction toward getting out of this mess. Because, the truth is , you can get out of this mess. You just need a doc to laydown the plan and then you have to take the hit on all the med trials. Its sounds quite mechanical, but wth lifestyle adjustments I think its the only way we can look to the future and a way out. Not easy I know, but better than dwelling in no mans land.

Is there no way Rauch could but a plan together for you? Have a look at Hains flowchart and maybe take this with you to showhim.

I would advise you get all the preganancy stuff out of the way first though and start on a clean slate.

Sorry if this post seems a bit harsh ad upfront, just hate to see people suffering and coming away from appointments upset and disspointed with no course of action.

Bonne Chance.

luke

Hi Lisa,

I’m sitting here typing to you on the bus heading into work. Thanks for posting about the appt even though you’re feeling so deflated this morning. It’s always enlightening to hear what another specialist has to say about this. I’m really sorry you left feeling so sad and not exactly upbeat after chatting with her. I really am scratching my head to be honest that she was not more familiar with the level to which this aspect of migraine can drop people given the comorbdity with anxiety and depression. Rauch says and so does Bernstein in her book (maybe where Ranch got the stats) that 25–35% of migraineurs suffer from dizziness. It makes sense that, of this group, there would be a spectrum of dizzy migraineurs who merely get the odd blip with attacks at the best end and those like us who are more to the other side of the bell curve where symptoms can be continuous, miserable and unrelenting.

I am very happy to hear that she and Rauch communicate because he seems to know MAV better than what she does. That she thought “VRT couldn’t hurt” sounds very naive and lacking MAV knowledge on her part because as we know it almost always exacerbates the whole problem and makes a migraineur feel worse. There’s no sense doing VRT unless the migraine is controlled first. To her credit though, there is one science paper out there that claimed VRT did help some people with MAV. However, it sounds like she naively threw that out there as “it can’t hurt let’s try something” sort of thing. No doubt Rauch will set her straight on that. Having yet another MRI seems like overkill too but I guess she wants to be certain herself. Lastly, skipping over the SSRI idea I think is short-sighted on her part as well when you consider there’s a clinical trial underway for people with MAV using Paxil as a treatment. This is being run by Dr Tusa’s group in Atlanta; he uses Paxil as a first line approach.

In terms of meds and different docs using a whole spectrum of migraine meds etc, I wouldn’t sweat this at all. Bernstein herself says that no two migraine brains are the same. We all have a unique “finger-print” if you like and therefore there is no single drug that works for everyone as we already know so well. Each doc seems to gravitate towards a few they like best for some reason –- I guess they see results (anecdotal observations) and feel at ease with particular drugs. As well, none of us has the exact same symptom set either.

Again, I’m not surprised at how badly MAV is kicking you around right now being pregnant and feeling so low and that things are grim. One of the worst part of this miserable illness is when it has you in it’s full grip, and the symptoms have gone on and on, it seems like it will always be this way. You cannot remember how it was to feel well and this present situ becomes your new reality. Try to remember again and again if you can how bad Victoria said she was with this – bed bound, yet she has bounced right back on a number of occasions to feeling 100% and has been mostly pretty good on Prothiaden (Halmagyi’s personal favourite).

My fingers are crossed that Bernstein and Rauch come up with a good plan for you – and fast. This has gone on too long. I think it’s a very good thing that Bernstein said she wants to think about it. Clearly she is really analysing your situation and doesn’t just want to throw just anything at you. At least you know it’s a thought out process on her part. She sounds as though she really listened to you which is a major plus.

Hang in there champ. Once your baby is born you can nuke this thing with something and finally see some gains.

I think to summarise all of this, it really boils down to this formula for all people with MAV:

— Begin quote from ____

  1. Keeping a record of your personal symptoms (to understand how your own migraine brain displays symptoms) and what seems to make them worse (certain foods for example) and then putting a lifestyle program into effect.

  2. If #1 doesn’t work well enough or MAV symptoms are so overwhelming to begin with, then a drug is used to gain some ground and let #1 also make some impact.

  3. The drug used is anyone’s guess and ranges from SSRIs to anti-convulsants to Ca+ channel blockers. No two specialists seem to agree but we know that all classes work for some people. Unfortuantely it’s trial and error.

— End quote

Take care … Scott

Just as a footnote to my earlier post - a colleague of mine is pregnant with her first. She’s 30 and about 7 months pregnant now. This morning she told me she’s recently had three or four migraines, just like my “classic” migraines, with the scintillating scotoma aura which lasts for about half an hour. Just like me no headache and a very fatigued, “hung over” feeling after. She’s never had migraines before, but her mother does. She does suffer from motion sickness.

I say this this to make the point that pregnancy seems to set migraine off, or make it behave differently, for a lot of women so if you can hang in there Lisa this all may change once your baby is born.

Just as a final, odd footnote - the colleague went to an opthamologist who DIDN’T diagnose migraine. He said it was “stress”. Jeepers, Migraine Blinded Freddy could see that is migraine.

Best
Vic

You guys are the best!! I woke up sick and depressed as usual, but then opened the computer to such thoughtful comments. Thanks!

Luke- doesn’t sound harsh AT ALL. I agree 100%. Rauch actually did lay out a plan. He wants me on Noritriptyline as soon as I am able. He was very clear with his plan, which is why I am so confused as to why he wanted me to see Bernstein. AFter they speak, I am going to contact him.

Victoria - yes, hormones can definitely influence this. i first got this when on BCPs, so I’m sure of it. What a naive doctor - when I first had migraine with aura my eye doc was certain of what it was. I miss those days of just having migraine with auras and headaches. memories…

Scott - thanks for your very kind response. I really need to get to the bottom of why Rauch referred me to her, as he had a clear plan for me and was so familiar with this dx. I will surely contact him after they chat. Just wondering - did you ever ask Rauch about why he doesn’t use SSRIs. During my appt, he said that it will not work. I think Nortriptyline is in my future. I took it last year, and had a tough time handling it, but I will revisit it and do my very best. Seems like so many do well on it. Dr. Rauch very much wanted me on it, and Bernstein spoke about how bad the side effects are. Well - when you’re feeling so ill, it might be a med w/ side effects that helps. As far as VRT, I was hoping that her experience with this disorder would help her come to an informed decision about whether it would be helpful, but that wasn’t the case. It seems liek the majority of docs have not recommended it for me.

Just wanted to give you a quick update. Dr. Bernstein emailed me to let me know that she spoke to Dr. Rauch and is eager to speak to me. She said that she will probably call tomorrow morning. she is a very kind doctor, and I appreciate her calling Dr. Rauch. I will let you know what happens. thanks again for all the support and good wishes.

Oh Lisa, that’s great. I’m so glad she was as good as her word and has followed through. I hope her message has given you a bit of a lift. I’m sure we’re all eager to hear what she will have to say to you. Hopefully something to set you on the right path to progress. Thanks for the update.

Brenda

Great news Lisa. Rauch would have made the whole MAV thing clearer to her if she wasn’t quite on the same page.

Very interested to know what she says.

Keep us posted!

Scott

Lisa: That’s fantastic. It sounds like maybe they have come to an agreement on a course of treatment. I will keep my fingers crossed for you. Let us know what happens tomorrow.
Joan

Thanks for all the responses. I did speak to Dr. Bernstein. She is still recommending neurontin, but said she’s willing to try Rauch’s choice, Nortriptyine. She again spent a lot of time speaking to me about taking advantage of resources for disabled people and going to rehab. I am putting in a call to Rauch, who seems to have more experience with MAV. I have to clarify everything, and will hopefully feel better after I speak to him. will keep you posted.