I have spent HOURS today reading through any posts about Dr. Hain. Being that I’m so sick, I have more than enough time to read through posts. I live in NY, and have been on many meds. However, the only med that I reached a high dose is Verapamil. I am on 480mg with no effects. I last saw Dr. Buchholtz. However, he does not prescribe the meds himself, so I am on a quest to find another neurologist. I would have to fly to Chicago, but I would be willing to do anything at this point. I notice that he prescribes Effexor quite a lot. I would definitely be willing to try that over Nortriptyline which is my next drug that I was planning on trying. I am just always so confused by doctor’s discrepant viewpoints. This makes this illness so much harder to handle. Please write a note if you are doing well on Effector. Also, any feedback on Dr. Hain is greatly appreciated. I will call his office on Monday. I am so thankful for this site. I would not found out about Dr. Hain otherwise. I can’t wait to get my life back. it has been much too long.
I also forgot to ask if Dr. Hain stresses exercise and diet like Dr. Buchholtz. thanks
— Begin quote from “MAVLisa”
Please write a note if you are doing well on Effexor.
— End quote
Hi Lisa,
It’s premature for me to comment really but I will say that after having just been through 4 solid weeks of continuous headache, neck pain and occasional dizziness, I am finally seeing the backside of it on day 5 of Effexor XR. I’ve started on a low dose to avoid sleep problems/anxiety etc. I learned the hard way last August (on Lexapro) what happens when you crank up an SSRI too quickly. It felt like someone had dumped 15 coffees down my throat all day long! Anyway, I’m on about 5 mg of Effexor and it’s day 5 now. No increased dizziness or any hassles apart from a really sore right heel that started the day I took the first dose and escalated over 3 days. Apparently a rare side effect is “bone pain” and I’ve read of isolated cases complaining of foot arch pain and heel pain on it. I’m hoping it’s temporary. I’m going to bump the dose up this week to 7.5 mg, 10 mg next week and so on. I think this is a pretty clean drug actually and Hain does say the side effect profile is very low for most. Conversely, Prozac for me was like being hit in the side of the head with a bat 10 days back. Astonishing how these meds can all have such different effects on people (great and not so great).
Cheers … Scott 8)
Hi Lisa,
Dr. Hain is my doctor but I didn’t fly all the way to Chicago. He gives consults over the phone too. It’s kind of expensive but I think it’s worth it. He put me on Effexor and I’m on my 3rd day and doing OK so far. I’m not a big fan of taking drugs in the first place, but Effexor seem to help in 80% of MAV cases so I’m giving it a try.
How long have you had dizziness for? And headaches if any?
Emma
One thing I forgot to add was how my appetite has gone through the roof. I can’t stop thinking about food. I lost 3 kg in Feb (don’t usually think about food) and at this rate will put it all back on and then some. Are you guys feeling a massive desire to eat all the time?
Scott
Scott - thanks for your response. lots of luck on the drug.
Emma - I have had chronic disequilibrium for almost 2 years. I have a history of headache and migraine with aura; however, my headaches are nothing now compared to the disabling dizziness. I have headaches about 2x per week. You said you did a phone consult - do you live outside of the US? I am currently on the highest dose of Verapamil. I wonder if he’ll keep me on that and add effexor. so, he was very positive about effexor? did he try to push Topamax as well or Effexor first. From what I hear, Effexor is much better tolerated than Topamax.
I forgot to also ask, did he say that the migraine diet is important. How about exercise and VRT? thanks
Overall, Dr. Hain is a good doctor and a talented diagnostician. Nonetheless, he is human and certainly not perfect. Like any doctor, although he is unusually thorough, he can miss some things.
To put that in proper perspective, he is the doctor who diagnosed me with MAV after previous docs diagnosed me with atypical Meniere’s. He is the first doc to put me on verapamil, and it helped. He indicated that he would put me on effexor if I failed on verapamil. Dr. Hain didn’t recommend physical therapy or diet in any way. No diet literature…no suggestions…nada. My wife and I figured a lot of that out on our own.
For various reasons, I ultimately moved on from Dr. Hain. Another doc picked off a few other things.He felt physical therapy would help me greatly. I was skeptical. I went for another opinion beyond that, and the puzzle was put together.
Indeed, my case is a combination of MAV, Meniere’s, Cervical Vertigo, & Palatal Myoclonus. If I could pinpoint one thing that has helped me the most since 2005…unquestionably…it has been physical therapy. My new doc also helped me with diet a lot. I thought I had the diet part of it nailed on my own, but the list of foods he gave to me helped me even more.
Having said all of that, I would definitely recommend a consult with Dr. Hain because he is more thorough than most docs out there. At the same time, I would not hesitate to recommend an extra opinion as well.
MSDXD - I can definitely understand you wanting to move on to another doctor. I have been to many doctors that have diagnosed me with MAV. Doctors w/ good reputations, but I now want a new look at things. What are your symptoms being that you have a combination of diagnoses?
— Begin quote from “MAVLisa”
MSDXD - I can definitely understand you wanting to move on to another doctor. I have been to many doctors that have diagnosed me with MAV. Doctors w/ good reputations, but I now want a new look at things. What are your symptoms being that you have a combination of diagnoses?
— End quote
Constant sense of disequilibrium which fluctuates. I have tinnitus…but not constant. Ear fullness & pressure. Some hearing loss, but not much. I can get a loud clicking sound out of both ears, which is audible to others…sometimes up to about 15 feet away (palatal myoclonus). I have pressure throughout my neck, upper body, and head. I sometimes get intense migraines, but not often. There are certain physical movements which will drastically increase my disequilibrium.
Etiology…a bad virus in early 2005, coupled with head & neck trauma…and a few other things.
All of this has improved tremendously over the years. The most significant improvement has been realized since last summer.
One clarification…I want to make sure this is articulated clearly. It would be wrong for me to write off Dr. Hain as “just another doctor.” I don’t think he fits that description. He is a good doctor, and I think he’s a good man…he means well. If I could fault him for anything, it’s that he might—don’t know for sure—take on so much, that it’s impossible for him to manage the amount patient —& non-patient—inquiries from around the world. Perhaps he’s too visible. His website is probably the best out there relative to these types of ailments, and that attracts a lot of attention. In the end, despite his obvious depth of knowledge, it doesn’t necessarily mean he’s the absolute best doctor out there to treat everyone. He’s one of the better ones out there.
— Begin quote from “MSDXD”
— Begin quote from “MAVLisa”
If I could fault him for anything, it’s that he might—don’t know for sure—take on so much, that it’s impossible for him to manage the amount patient —& non-patient—inquiries from around the world. Perhaps he’s too visible
— End quote
. His website is probably the best out there relative to these types of ailments, and that attracts a lot of attention. In the end, despite his obvious depth of knowledge, it doesn’t necessarily mean he’s the absolute best doctor out there to treat everyone. He’s one of the better ones out there.
— End quote
MSDXD - I’m sure you are absolutely right on a patient-care level; that being said I do think Dr Hain’s website is doing a great job as it’s absolutely crucial that reputable Doctors do publicise and get the word out about this awful condition and the treatments available. As I’m sure happens to most MAV sufferers in every country, here in the UK I have had a terrible time getting this my illness diagnosed, treated and recognised. Having accessible websites I can refer or direct people to (both medical and non-medical) has been invaluable.
Dr. Hain didn’t recommend physical therapy or diet in any way. No diet literature…no suggestions…nada. My wife and I figured a lot of that out on our own.
Halmagyi was pretty much the same here in Sydney. He never mentioned migraine triggers at all … just wrote a script for Prothiaden and said ,“send me a postcard when you feel better”.
Scott 8)
— Begin quote from “Beech19”
— Begin quote from “MSDXD”
— Begin quote from “MAVLisa”
If I could fault him for anything, it’s that he might—don’t know for sure—take on so much, that it’s impossible for him to manage the amount patient —& non-patient—inquiries from around the world. Perhaps he’s too visible
— End quote
— End quote
. His website is probably the best out there relative to these types of ailments, and that attracts a lot of attention. In the end, despite his obvious depth of knowledge, it doesn’t necessarily mean he’s the absolute best doctor out there to treat everyone. He’s one of the better ones out there.
MSDXD - I’m sure you are absolutely right on a patient-care level; that being said I do think Dr Hain’s website is doing a great job as it’s absolutely crucial that reputable Doctors do publicise and get the word out about this awful condition and the treatments available. As I’m sure happens to most MAV sufferers in every country, here in the UK I have had a terrible time getting this my illness diagnosed, treated and recognised. Having accessible websites I can refer or direct people to (both medical and non-medical) has been invaluable.
— End quote
No doubt…just my opinion…the website is one of the biggest contributions to the field, and has helped an enormous amount of patients become very educated. I still refer to it when I’m curious about something. Lots of good information on there.
Lisa -
Another side effect I can report is this feeling of “everything is all too hard”. It’s like I just can’t be bothered. I have a ton of stuff to get through at work yet feel like lying on a couch and doing nothing all day. It feels like I’d be happy to stare at the ceiling for the entire day. This is not the norm for me at all. I’m already going to be late for work today and I don’t care! :?
Scott
— Begin quote from “scott”
Dr. Hain didn’t recommend physical therapy or diet in any way. No diet literature…no suggestions…nada. My wife and I figured a lot of that out on our own.
Halmagyi was pretty much the same here in Sydney. He never mentioned migraine triggers at all … just wrote a script for Prothiaden and said ,“send me a postcard when you feel better”.
Scott 8)
— End quote
I wouldn’t say Hain was that abrupt. He’s not lazy, and he’s not arrogant. If anything, I wouldn’t be at all surprised if he works **too ** hard. I went through a lot of testing with his staff, and met with him for quite a while afterwards. My second appointment was somewhat extensive as well. Despite the testing and solid appointments, some things were missed. Even the best out there—like Hain—can miss key components.
In the final analysis, the focus was drug therapy. Verapamil & Serc. We agreed to drop serc after a while, because it was evident that the verapamil was helping more. Still, my wife and I really spearheaded the diet part on our own. I experimented on myself, and found a heckuva lot of triggers through independent study. Later on, the physical therapy part through the other doc—he referred me to a great PT— was a big surprise to me. I had gone through VRT before—in 2006…a year before I met Dr. Hain—and it didn’t do as much good as I hoped. The PT I went through in 2008 was a big catalyst. Big surprise.
Overall, I would suggest to anyone to go through Dr. Hain’s website in depth. It’s worth it to spend several days going through the whole site. Anyone can benefit from it. Is it, however, **THE **answer? Nope. The nature of these types ailments continue to be elusive. When I get into a conversation with people about MAV/Meniere’s, etc., I often use the term “unfortunately fascinating.” It’s a journey with more questions than answers.
I do hear Hain and Cherchi have excellent bedside manner and Cherchi is quick to repsond to emails etc which is amazing. I sent Halmagyi an email once and never heard a word back unfortunately.
— Begin quote from ____
Later on, the physical therapy part through the other doc—he referred me to a great PT— was a big surprise to me. I had gone through VRT before—in 2006…a year before I met Dr. Hain—and it didn’t do as much good as I hoped. The PT I went through in 2008 was a big catalyst. Big surprise.
— End quote
Do you think that was because the migraine was uncontrolled the first time around?
Scott 8)
Hi MSDXD,
Where did you go for physical therapy? Do you have a website you can share?
Hi Lisa,
Dr. Hain was very positive with taking Effexor, but it’s best if you talk to him yourself to see what’s right for you.
I’m in Los Angeles but I think he does consults over the phone from other countries too.
Best of luck,
Emma
— Begin quote from “scott”
I do hear Hain and Cherchi have excellent bedside manner and Cherchi is quick to repsond to emails etc which is amazing. I sent Halmagyi an email once and never heard a word back unfortunately.
— Begin quote from ____
Later on, the physical therapy part through the other doc—he referred me to a great PT— was a big surprise to me. I had gone through VRT before—in 2006…a year before I met Dr. Hain—and it didn’t do as much good as I hoped. The PT I went through in 2008 was a big catalyst. Big surprise.
— End quote
Do you think that was because the migraine was uncontrolled the first time around?
Scott 8)
— End quote
Partially…yes. Back in 2006, I was being treated only for Meniere’s.Indeed, the verapamil had improved me quite a bit in 2007 & part of 2008. However, the new doc added effexor along with the verapamil, & picking off the cervical part was new as well. The PT in 2008 was much different compared to 2006. She was extraordinarily sharp. She knew more than most docs. I found that I have to do those exercises daily. If I don’t, I feel the impact.
— Begin quote from “emmasaga”
Hi MSDXD,
Where did you go for physical therapy? Do you have a website you can share?
— End quote
Sent you PM.