I'm not alone!

Specific Illnesses & Conditions VM/MAV
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Hi everyone!
I just discovered this forum and I’m so glad I did. I’m not going crazy after all. For about 30 years I’ve had “attacks” that no one seemed to know how to categorize. I would have 2-3 days of extreme dizziness and my head, while not actually hurting, would feel like it was being squeezed. Fortunately, I only would get these episodes rarely; sometimes years between them. But, they always followed the same pattern: 2 days of dizziness, one day of complete exhaustion. I went to an ENT in 1987 who said it was Meunieres, then I went to an ENT a few years later who said it wasn’t Meunieres, it was probably sinuses. Finally I saw an ENT who said he thought it was some form of migraine and gave me Relpax. True to form, however, I didn’t have another “attack” for a few years. I used the Relpax, but wasn’t sure it helped.

They went away again for a while, only happening sporadically and always following the same pattern. In December 2014 I had the first one for a few years and it was the same. I went to a neurologist (finally) near where I live who said it was a “basilar migraine” and prescribed Imitrex. Then, in May of 2016 I had one that lasted for 2-2 1/2 weeks. I took the Imitrex, which didn’t seem to do much. It got better after the initial 2-3 day blast, but then leveled off and I just felt some vertigo, heaviness in my head. After about 2-2 1/2 weeks it just disappeared. Until January 13, 2017. That was three weeks ago and I’m better, but still feeling not right. I went to my neurologist who wants to put me on Topomax, but after reading all the nasty side effects I decided to get a second opinion.

I went to a neurologist at the Weill-Cornell headache center which is part of New York-Presbyterian Hospital. The doctors here are considered “super-doctors” and I was lucky to get an appointment as quickly as I did, because someone had cancelled.

This doctor listened to my symptoms and immediately said I was having vestibular migraines. He does not want to put me on Topomax because of my history of only having them once a year or so. However, this is just hanging on and, while I’m better than I was a week ago, I still feel like I have a heavy head and some dizziness when I move my head a certain way. I actually feel better as the day progresses and I can almost forget it, until I move my head that way!

However, I was starting to become anxious that I would never get better and I called the NY doctor who called me back rather quickly, thank goodness. I asked if it would go away and he said “absolutely.” I asked if he was sure and he said “100%.” I asked if there was anything I could take and he said he doesn’t believe in over medicating patients and that I needed to “let nature take its course.”

Sorry this is so long, but I have been suffering from this for 3 weeks now. It has gotten better, but it still is awful. I’m a high school teachers, so I have been going to work and just sticking it out. As I said before, I do feel better by the afternoon. I don’t have any problems driving and I don’t feel off-balance, I just feel “off”, if you know what I mean. I have hope because so many of you say it does go away, albeit slowly, and many without meds.

Any suggestions?? Thank you in advance!

Sherri

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Hi Sherry,

I was reading your post and I too gave a long history. I will fast forward and tell you that my symptoms began initially with visual issues and a heavy headed feeling. That was 40 years ago. The past 20 years , I have seen my symptoms progress from the above to daily bouts of vertigo ( not room spinning type), bilateral tinnitus and mild bilateral hearing last loss. I was diagnosed MAV in 1999 and have been in and off different meds since.

I tell you this as I believe MAV should be treated even when not full blown symptomatically. Reason being, I have also been evaluated by every “super specialist” on the East coast. Final diagnoses is MAV with bilateral hydrops. The consensus is repeated migraine since childhood has damaged my inner ears bilaterally. Perhaps if I had been adequately treated for symptoms as a child and young adult, I would not have this damage. This is their theory. Cannot prove it but I’ve seen The continuum occur.

Perhaps, get another opinion elsewhere. BTW, my regular neuro happens to be affiliated with NYP. All the best moving forward.

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Hi, thank you for your advice! The doc did give me a prescription for prednisone to take at the first sign of the migraine. What medicine do you take and who is your doctor? Is he/she local? I would gladly go for another opinion. I have one neurologist in NJ who wants to give me meds and the one in NY who doesn’t.

Thank you,
Sherri

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Hi Sherri! No, you are not alone !!!- Finding this site has been wonderful for me - to find others with whom I can identify!!
I too, am a long time sufferer of vertigo etc, etc, dating back almost 50 years. Eventually diagnosed as meniere’s, by which time had already lost most of the hearing in the affected ear/side. Had an op…put on something called Stugeron which did nothing. Same story - on and off - sometimes off for years at a stretch till it re-surfaced in Dec 2015 - with a vengence! Got nothing new out of Dr/ENT,… and then it went away for 3 months…and returned in a different form that fits the MAV symptoms far more than before! I have experimented with supplements ( information largely gleaned here), including Magnesium (chloride) and Feverfew. I have been almost 100% for about 2 1/2 months - whether due to supplements or just a ‘break’, I cannot say with certainty.
Perhaps you could research the Magnesium so long and give it a try, as it can basically do no harm (unless larger doses cause a runny tummy for you), and is something that apparently most of us lack nowadays anyway. My personal belief is that if the body is healthy overall it is better equipped to fight whatever this is that ails us! It’s just not always easy to eat well if one is feeling ‘off’ all the time!
Good luck - hope you can soon find a solution to suit your needs!
Beth

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Hi Sherry,

My current drug regimen is Nortryptiline 25mg, neurontin 300mg 2x daily,
torsemide 10mg. I will PM you Doctors names if you’d like! :blush:

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That would be great! I don’t know how to PM on this forum, though. Do you?

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Also, I found a Dr. Cohen who seems to be a specialist in Vestibular migraine in NYC, but also a Dr. Gizzi at the JFK Neuroscience Center in Edison NJ. Do you know anything about them? I’m anxious to nip this in the bud!

Sherri

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Sherri,

I know of Dr. Gizzi. Consulted with him way back in the nineties. Not sure he is there at JFK in Edison any longer I can highly recommend a Dr. Philip Kramer MD. He’s also at the Neuroscience institute at JFK. I met with him in November. Dr. Kramer is Hopkins trained under David Zee MD of Johns Hopkins ,a brilliant neurologist who I have also met with. I do not know Dr. Cohen. Where does he practice in NYC?

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Dr. Cohen is at the New York Headache center on W. 59th st. I googled Vestibular migraine specialist NYC and his name popped up. He has a page on his website all about Vestibular migraines and apparently he’s written articles about it, etc. I also read about Johns Hopkins. So, Dr. Kramer is familiar with vestibular migraine? I definitely need a third opinion. I’m not sure I want to be on a lot of meds, but I’m not sure not treating me is the way, either. There has to be a happy medium! My problem is that all these medications have side effects like making you tired and as a high school teacher, I can’t be “off my game” if you know what I mean. They sense it!
!

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He is Harvard, NYU educated etc. Affiliated with Mt. Sinai/Roosevelt/St. Luke’s

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Yes, I checked out Dr. Cohen and he does have an impressive CV and seems to head up a headache clinic. Keep me updated if you decide to go for a consultation. Dr. Kramer is very familiar with MAV and gives a thorough evaluation. I can understand not wanting to be on meds but most times , not always, the body will adjust . My personal experience with preventatives and I’ve tried quite a few, is that after a few days side effects if any dissipate.
I can understand your need to be “on” as a teacher and not groggy, but living and trying to work with a dizzy , heavy migraine brain is not conducive to a work day either.
Good luck and let me know how you come along!

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What can help with vestibular migraines…

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There’s quite a lot you can do. First thing is to see a good doctor who knows what they’re doing with this. With medication, diet and lifestyle modifications you can make a big difference. What stage are you at?

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Hi everybody and NYGAL,
Well, my symptoms did go away in March 2017 and I was fine for about 3 months. I did go see Dr. Kramer at the NJ Neuroscience center who said I had vestibular migraines and prescribed vestibular therapy. However, sometime in June I started just feeling “off” again. No vertigo, but a heavy headed feeling like before and just off; hard to explain. I then started to get almost daily headaches! This was similar to how I felt in January 2017, but not as intense and not as bad.

So, I went back to Dr. Kramer who is an oto-neurologist and they put be on 5 mg of desipramine once a day to start plus a vitamin supplement called Migrelief. I’ve been on them for about 2 weeks and I’m feeling better. I declined amitriptyline (spelling?) as I had tried that before for overactive bladder and it made me seriously stoned. My “off” feeling would be worse in the morning and would be better by the afternoon. I just am so confused as to how my migraines have changed suddenly. I guess it’s just life and old age! Also, my doctor stated that age is on my side as most types of migraines tend to taper off after the age of 60.

Hope it gets better and stays away this time! I just turned 60, so maybe this is it’s last “hurrah!”

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Hi NYGAL, So sorry it’s taken me months to reply. I couldn’t remember my user name, etc. Dr. Cohen no longer is affiliated with that practice and I couldn’t find him anywhere. But, I did go to Dr. Kramer who is great! He was very upbeat and optimistic and said I was going to be “just fine!” I have started on a daily med, desipramine 5 mg, and Migrelief supplements. I felt better for 3 months or so, then started feeling “off” again; heavy-headed, slight headache, etc. So, that’s when he started me on the meds. He also said that migraine can taper off dramatically after the age of 60 (which I am) so perhaps age is on my side.

Hope you’re doing okay, and thank you again!

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Hi there!

I’m so happy to hear that your doing better. Dr. Kramer is very knowledgeable. Keep me updated and continued good health!

Corinne (NYGAL)

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We could do with more doctors like that! Good for you!

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I just started on this forum. It is clear to me after reading many of your posts that there seem to be many possible diagnoses for the same or similar symptoms. My current diagnosis is Vestibular Migraines. I think the doctors just keep trying treatments until they find one that works. Every patient is different. I have been sick for 3 1/2 years and have now tried 6 different daily migraine meds. along with a lot of other things. Started botox in April and was put on Depacote as a daily prevention drug and Maxalt for an as needed drug. I don’t want to jynx this, but I’m not as sick as I have been. I haven’t had to go to bed for 9 days now. New record.I know how discouraging this can all be. It’s so completely unpredictable that it makes it hard to make long term plans. I think one thing I did that my doc recommended was to only allow myself 9 migraine medicated days a month in hopes of preventing rebound headaches. So, for the las month or so, I have just gone to bed when I feel a headache coming on. Think it has helped… So, you are not alone. , just feels like it sometimes. Good luck!!

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Hi, I’m replying to you because I can’t figure out how to just post a question on this forum! I have been dealing with some symptoms since June 10. Mostly, heavy headed feeling and just feeling “off”-maybe slightly dizzy, it’s hard to explain. My symptoms are worse in the morning and seem to get a little better as the day progresses and night time is the best. It’s better if I wear my contacts instead of my glasses, but I have dry eye problems, so I can’t always wear contacts. I don’t have problems driving or working on a computer or anything like that, I just feel unwell, like all I want to do is put my head down. Exercising makes it better, driving makes me forget I’m even having problems, and walking is good. It’s just the everyday moving around at home that makes me feel off. Anyway, my doctor prescribed desipramine-first 5 mg for 2 weeks, now I’ve been on 10 mg for 4 weeks. I do feel better than I did, but it’s just not going away like it did last time.

My question is, does anyone have experience with this drug? It is a tricyclic antidepressant, like amitriptilyne only with less side effects. It’s also a milder drug, which I asked for because I understand amitriptilyne can cause extreme drowsiness. I’m thinking I should increase to 20 mg, but as I am feeling somewhat better should I stick with the 10 mg and see if it continues to improve? Anything would be helpful! This “beast” is a horrible thing; and I just hope it will eventually go away!

Thanks!