Professionally, I’m a management consultant. I work with high-tech organizations to improve how they manage their product development—to maximize management and technical staff productivity and to improve product quality. I take a pragmatic approach; I don’t care where you are, I’m interested in what you could do for your next steps to improve.
I’m well-known for (and have a lot to say about!) project management, program management, project portfolio management (agile or not), and hiring technical people. Please see my books page.
I write tons of articles and columns. I also write a professional blog: Managing Product Development.
Personally, I’m a wife and mother. On September 5, 2009, I suffered an inner ear hemorrhage. That left me with permanent vertigo and total (sudden) deafness in my right ear. This blog is about what I’ve learned and how I’ve helped other people manage their changes—desired or not.
You can reach me by email using the Contact page.
The Socials
Look for my name everywhere. And since social media is so—ahem—interesting lately, here are the various links:
My Link.tree for everything.
hello,
i was browsing through google and came across your blog.
wonderful blog :)
you have vertigo? may i ask what type?
i have bppv, do you have bppv?
i was wondering if you do have bppv, how do you live life daily?
your blog is very encouraging, thankyou :)
hope someday someone can help find a cure for all vestibular disorders.
sincerely,
kaye
Kaye, I have mostly oscillopsia. I also have nystagmus. Every so often, I have BPPV. See this intralabyrinthine-hemorrhage page for the details.
I wrote a series of “how do I” pages: How Do You Drive?, How Do You Travel?, How Do You Take a Walk?, How Do You Dance?
It’s difficult for people without vestibular disorders to understand the challenges we face. it’s difficult for those of us who are Medical Mysteries to keep going. I hope the vestibular docs find a cure for us, too.
Thanks, I’m delighted you enjoy the blog.
I love this blog, the best on the Internet as far as I am concerned. Johanna, people will never understand what those with vestibular disorders have to go through. You are an inspiration.
Johanna– I often worry about falling and severely hurting myself, I often think of using an electric wheelchair when getting around outside in busy places, have you ever considered this as well from a safety standpoint and a mobility standpoint. I live in Chicago.
Please keep up the great work!
Joseph, thank you. I fell again (!) today. I am seriously considering it. I have pictures of getting around Brussels in a wheelchair, that I am planning on posting when I return to the US. The idea of me in a wheelchair? Oh boy. That took some getting used to. More on that later. Thank you.
Johanna: it is amazing you are still able to work! You are an inspiration to many.
I had a question: do you continue to drive? Are you able to walk the busy streets of Boston and walk outdoors for that matter? The fear of getting bumped would scare me as we all know falls can be dangerous. Shopping in stores would seem nearly impossible?
Keep up the great blog. You are an inspiration!
Joseph, I can still drive, because when I keep my hands on the wheel, I have better proprioception than when I am a passenger. When I had more vestibular testing, the technician explained why, but I forgot already. It’s about feedback to my brain. (Calling her a technician does her a disservice.) Driving at night is exhausting. I can drive for a few hours during the day and then I crash.
Walking outdoors is a huge challenge anywhere and quite scary. If I have a good day and can pick up my feet, it’s okay. But I get tired quickly, and forget to pick up my feet, and then I’m a fall waiting to happen.
Grocery shopping is easy because I have a cart. Mall shopping is okay, but exhausting. I have a limit of about 90 minutes, including the driving. On a good day, I can push that to two hours. Thank goodness for internet shopping.
Johanna:
I love this blog— keep it up.
As someone who has no vestibular function in either ear, I struggled wih balance for last 4 years and many of the visial stuff/oscillopsia. I finally told myself enough was enough and got myself an electric wheelchair for outdoor use. WOW I am free and now nobody can keep up with me and never worry about falling.
At home it is the cane and long hours on the treadmill and stationary bike to keep my muscles strong. My chair is a life saver not just mobility wise but confide ce wise as well.
Keep writing—-you are the best!
Joseph, My goodness. Good for you for getting a wheelchair. Having the confidence outside the house is key. Having the stamina is also key. Keep those muscles going!! I will think of you tomorrow at the gym when I think, “Oh, I just don’t wanna. Well, Joseph is.” Then I will go. We’ll keep each other going. — Johanna
Johanna:
Just read your last post about independence, and I agree with you, a power chair will give you back your independence , safety, self confidence and keep you from getting so fatigued outdoors. Mine has given me my life back, with it I can go anywhere and not worry about the environment. Falling at the wrong time in the wrong place could be a matter of life and death. Falls can result in serious injury and even death. Be very careful.
Love the blog.
I “hear” you about the balance issues. My acoustic neuroma and subsequent surgery left me with single sided hearing loss and a wobbly walk. My brother Jimmy directed me to your blog. I look forward to reading more of your adventures! <3
Hi Jeannie, welcome! Us dizzy broads have to stick together, don’t we? (You dizzy gents are included!)
Hi, Johanna , hope this is still an active site! I was looking for an otoneurologist and I found your postings…I have Ménière’s disease ,balance disorders, nystagmus ….I’ve been treated with gentamicin , Valium , serc….and physical therapy …trying to regain what I can! I’ve thought of looking into the possibility of using a balance /hearing service dog…what do you think? I like that idea better than other options. Thanks Carol
HI Carol, yes, this is a very active site!
My otoneurologist suggested these things to me:
– steroid injections
– gentamicin to kill the rest of my ear
– what I call the rotor-router option to surgically remove the rest of my inner ear.
I did the steroid injections. I wrote about that in Making Difficult Choices.
The steroid injections lasted about a year. My vertigo got worse for other reasons.
As long as you don’t trip over a dog, a service dog might be a great idea. The problem is that the dog won’t help you keep your balance. I use a cane and/or a rollator. I am at the point of using a rollator whenever I leave the house, because I am undependable walker :-)
The question is this: What will give you stability? What will relieve your symptoms? Those are questions you need to answer.
Hi johanna ,
Thanks for your post. I had vertigo on 11-06-2015 and my ENT suggested it’s BPPV next two months I suffered a lot but no vertigo after 1 week, but I had balance problems but now I am feeling almost 99% cured. And I don’t have any symptoms I am able to do all the work as previous. But I saw most of places they are written it may recur. It is a night mare to me Kindly help me to how to avoid this one permenantly. I did the following tests to rule out other problems Cartoid duplex related to artery blood flow, EEG,Lot of hearing tests,MRI everthing is normal.
I did below things :
Daily I will drink around 3 litres of water.
Frequently I will drink Ginger tea.
Eat lot of Greeny vegetables and fruits.
Now started playing cricket :)
Hi Johanna,
Just want add some more points for more clarifications.
My age is 27 (male) and I did bungee Jumping,Rafting,Zip lining before the one week of vertigo. May be that could be ther reason for the vertigo ?
HI Bala, if you have BPPV, it’s possible your crystals got “dislodged” aka moved around with all your exercise. I’m not so sure your activities caused it.
As to what you can do, I wrote a post called Seven Things You Can Do to Help Manager Your Vertigo, The water is great. I think ginger tea doesn’t have caffeine and might help with nausea. Vegetables are quite good. As long as the fruits don’t raise your blood sugar, they are good, too. I don’t know anything about cricket; I know about baseball :-)
If you have another attack, go see your ENT. If you are feeling good now, keep taking care of yourself and don’t worry. I am dizzy because of my oscillopsia all the time. I don’t care! Good luck to you.
Thanks Again Johanna. For your quick reply. I am really happy and inspiring to see a woman like you. God bless you Mother.
Thanks for your suggestions I will follow it. First I did Brandoff excercise but that one is not effective for my vertigo. After that I did Half somersault maneuver it’s really cured my vertigo quickly :-)
It’s so surprising which exercises work for which people, isn’t it? Delighted you found something that works.
Thank you for your kind words.
Hi! Posted on another of your postings. Just wanted to say that you have an AWESOME blog and I’m thrilled to have found it! I’ll probably post a lot for a bit as I do NOT have a good in-person support system so I do look forward to online “support” where I can :)
On a professional level want to say you’re SUCH an inspiration! I’m mid-40’s myself, a PMP and BA. Worked in technology for probably 18 years or so. Used to work in Boston myself through KPMG Peat Marwick (just before their “Bearing Point” years). I was a road warrior, did the travel thing, on and off planes and in and out of airports despite my tremendous fear of flying.
Now? I have left my career due to this issue. Couldn’t do the corporate stress (although I worked in a VERY hostile work environment, totally toxic!) anymore and made a “quality of life” decision, particularly given I was trying to manage what I now have been told is BPPV (by an ENT who did the Dix Hallpike to diagnose, althoughhhhh, in reading further they are supposed to do it three times to ensure the nystagmus fatigues), and raise my 9 year old daughter. Her dad lives in NY (I’m in CT) so there’s bi weekly travel and I need to keep energy and ability up to do THAT travel. Sooo, different life choices. Adapting :)
Anyway, I think what you do is amazing!!! Did you ever experience panic with what you are dealing with? I would say that’s my biggest thing now. Overcoming the panic I get with it…
Dawn, I’m delighted you like my writing. Read and comment away!
I agree, leave toxic environments. They are not worth it. Maybe you can consider something in another organization? (I really like to work :-)
I don’t have real panic attacks. I do find myself worried and anxious more before I travel. I make all the arrangements in advance to make my travel as easy as possible. I use limos (they pick me up in baggage claim), I fly business overseas so I can sleep, and that kind of thing. I use a rollator to get myself to/from anywhere I need to go, which helps me focus on walking fast instead of walking carefully.
When I teach, I double check my checklist to make sure I have done everything I am supposed to do, and have everything I need so the day(s) will go smoothly. I also tell people I have vertigo (I say, “I have vertigo. I’m unsafe at any speed,” when I introduce myself.
I find that driving tires me, more than I expected. I can drive for about 2-3 hours at a time. After that, I better not drive anymore for 24 hours, because I will fall asleep. I can do 2 shorter drives of up to 1.5 hours, and then I fall asleep. Vertigo takes a lot out of me.
I think, “What’s the worst thing that can happen?” and then I proactively plan for that.
I find the nystagmus to be exhausting. I find that my lack of a vestibular ocular reflex makes me dizzy. I am finally on meds that work for my oscillopsia (baclofen), which helps enormously. My eyes only go up/down/side-to-side when I am quite tired.
It took me years to discover the baclofen. My otoneurologist tried as best he could, and my unique-ness was no match for him. I would prefer to be like everyone else. Oh well. Not going to happen. That’s why I recommend you find an ENT and/or otoneurologist who will work with you. (A regular neuro suggested baclofen.)
You’re wonderful. My vertigo has been making me anxious and I finally found your blog. Knowing other people are suffering is so incredibly comforting. Thank you for writing this and for engaging with fellow sufferers.
I have occasional anxiety anyway and the vertigo makes it so much worse. I had my first episode about two years ago (when lying down on my right) when I was in graduate school and the university doctor checked my balance and reflexes and declared it idiopathic and assured me it would improve gradually. It did.
It started again about a month ago – again only when lying down on my right – and has been getting gradually better but I just had a bad episode when lying down to take a nap and I realise I had more caffeine than usual so I came to the internet looking for “caffeine + vertigo” and found you. The vertigo makes me terribly anxious.
I’ve self-diagnosed BPPV since then. Both times the episodes have followed periods of high stress or anxiety and then once I get the vertigo, the anxiety gets worse and that’s the cycle I’m stuck in. In all your research, what have you discovered about the relationship between anxiety and positional vertigo?
I’ve tried the Brandt-Daroff exercises but I don’t like the sensation and since it doesn’t work on everyone, I decided it wasn’t worth it.
As per your suggestions, I am now sipping large amounts of water and plan to switch to green tea from tomorrow and then gradually remove caffeine from my diet.
I am currently traveling through less developed parts of the world and won’t have access to a good ENT until the end of February so the internet is all I have. Do you think it’s safe for me to try the Epley maneuver by myself? And if so, should I take an anti-nausea pill before I do? My nausea isn’t too bad. Reading about what other people here go through, I am feeling fortunate that mine isn’t so bad as yet.
Please keep writing. As many people have noted, just knowing there are others out there helps.
Hi D (What is your first name? No worries if you prefer not to share), I’m so glad you have found this site useful. Let me be clear: I’m not a doctor of anything. I am a fellow vertigo sufferer. I can tell you what works for me. It might or might not work for you.
I find that I am anxious when I have not slept enough, I’m nervous about a situation, hepped on caffeine—times when I feel unsafe. I try to ask myself, “Why do I feel unsafe?” and go from there. The first step in resilience is physical safety. See Building My Emotional Resilience, Part 1. What do you need to do to help yourself feel safe? Can you do any of that now?
For *me*, I don’t appear to have a link between anxiety and vertigo. I know that I am less steady because I am not breathing properly. I walk worse, even though I am not dizzier. But if I’m not breathing or drinking water or otherwise taking care of myself properly, I will walk worse. I am more likely to fall down.
I don’t have BPPV often, so I don’t know if there is a link between anxiety and vertigo. I do know that for *me*, the BPPV is exhausting and confusing. I used the Epley maneuver, not Brandt-Daroff. As with everything, your mileage will vary.
When I went for my vestibular testing, I discovered a spot I could focus on that would calm my dizziness. My right ear is broken. When I look up and to the left, I can calm my dizziness. When I look straight down, my dizziness increases. I am sure this is *my* trigger spot for worse/better. You might experiment with where to look for maximum ease. I can only suspect that up somewhere is better rather than down. Up will help your crystals find their way back to where they belong.
I never took an anti-nausea pill before the Epley. If you have access to a vestibular therapist even without an ENT, see if you can get a professional to help you the first time you do the Epley. I did and that was helpful. On the Inside a Vertigo Attack page, some people report that the Epley did not help them. We are all so different even though we have similar-appearing symptoms.
I’m so glad you found my writing (and everyone’s comments) helpful. You have made my day! Please take care of yourself and I hope you manage the next couple of months well. Best wishes for your recovery.
Thank you, Johanna, for taking the time to reply. I just tried the Epley myself and will let you know how it works out. And I’m hoping to go see a regular doctor in the area tomorrow, for what it’s worth. If nothing else, just to ease my anxiety a bit and be assured that it isn’t anything more serious. It doesn’t seem to be but best to get as proper a diagnosis as possible. My own health anxieties that border on hypochondria always put me into worst case scenarios and that anxiety doesn’t help anything.
I am certain now that caffeine was to blame this morning.
I also read your Building My Emotional Resilience piece and am working on restarting my exercise routine tomorrow. I’ve been nervous to do it because of the vertigo but I think I have to get back into it slowly.
(Sorry for not using my first name – it’s very distinct. But I’m more than happy to use it in email interactions.)
Again, thank you so much! I feel less alone while being alone and that’s such a help.
Hi D, you know, we dizzy people of everyone, deserve a little hypochondria! We are not in control of our bodies. That’s wacko, when you think about it.
Glad to hear you are starting back on exercise. I just returned from one of my little walks. (I take 2 1400-step walks each day, and that gets me to a total of 5000 steps a day. Not perfect, but I’m no longer a slug. I also have my PT exercises which I do every day.) I blogged a little about this in How Often Do You Look for Feedback?.
I have found it quite useful to think in small changes, so I can do big things. No resolutions for me. Nope, I do small things.
You might need to move off caffeine slowly. I decaffed when I had my first child, and I can drink green tea, one diet coke, and/or one Snapple diet iced tea a day. I believe (but am not positive) that my total caffeine intake is less than one cup of coffee. I do not have a diet soda every day except when I travel. At least, caffeine isn’t like nicotine. You have more than a shot of succeeding.
You might want to build a support community where you are now. I wrote about this in Build Your Support System. You have us, this vertigo community. You also need people who know you. I have people all over the world because I travel. I hope you do, too.
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Thank you for this blog!
You’re welcome!
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