Dr. hain and mayo clinic and still not well?

I am so discouraged to read about people seeing Dr. Hain, and still searching for a pill or a solution, then going up to Mayo in minn. and getting no relief there either. I have an appt with Dr. Hain late March and I was so excited, thinking he would “fix” me. Noone seems to be “fixed”, and it seems like it’s just a series of taking a pill, even if it makes you feel terrible, waiting, waiting, then changing to another pill that makes you feel terrible and waiting and waiting . Why is Dr. Hain considered so wonderful if people go to him and still are looking for other Dr’s. or other pills??? I mean, I can get a prescription for effexor or nortriptoline or something like that from my GP or any neurologist. I already know I have MAV. I am miserable, spinning, trying to work my dose of Verapamil UP to 240, 10mg at a time for a week each. I know the verapamil is helping as it stopped working about 2 weeks ago and I go hit with 2 huge vertigo attacks and migraine headache came back. Both of those had been gone since verapamil started, but it’s like it wore out at 180 mg. and so I am trying to up it, and now I’m wondering what Dr. Hain could even do for me, besides try and put me on effexor, which he can’t, as I’ve done that and am not doing it ever again. I guess I sound really in a bad mood today, but I’m driving all the way to Chicago from Arizona and now I’m wondering what for??? spinning lady

Hello lovely

OK so you put forward a good argument, why see Hain over any other neurologist when you already know the types of drugs that are out there and used to try and provide some relief from MAV.

Before I went to see my consultant, Dr Surenthiran, in the UK (and I only found him because of this forum), I printed off some of the drug information from this site and went and worked with my GP. We agreed to start me on Nori. It was another 8 weeks before I saw Dr S and he commended me for my research and getting myself on the Nori because that’s what he would’ve started me on anyway.

You have a choice. Either tackle the drugs you know about and work with your GP and/or any local neurologist / neuro-otologist preferably or make the drive to see Hain. Whilst he is an expert in the field, he is not a wizard able to wave a wand with a ‘one size fits all’ drug. It simply doesnt work that way.

I think also you’re only reading the very worst cases on here about seeing different doctors and trialling different meds. No matter who you chose to see, you are going to have to go down this route. The med that works for you is likely to send one of the others on this board running into on-coming traffic!

This illness is torture enough without you being pessimistic on top. You have to believe there is a drug or drugs out there that will make you feel significantly better. Nori and Gabapentin with the odd lashings of Valium has worked well for me, but am I 100% cured, no.

If you dont want to drive to Chicago, then maybe organising a telephone consultation with him instead, enough people do that.

Please let us know what you decide and if you chose to go, how your appointment went.

Peace x

I am so sorry that you are suffering so…I have been there/done that and I know the total feeling of despair! Unfortunately it really is a try this drug and then try another. I am on 3 daily preventatives. so you might just need to add another to the verapamil. I don’t think I would discontinue the verap but perhaps add in a new one. I’m wondering if Nortriptalyne or Effexor would be best to add in…just a thought.
I like what Muppo suggested about a phone consult. If he can do that, that should work just as well as a face to face consult without all the driving!!!
How long have you been on the Verapapmil? I ask because if has been less than 2 months, then it really hasn’t had enough time to do its thing. I take 240 SR in the AM and the same at night. It is a very easy drug to tolerate…so try to hang in there with that.

Keep us posted!
Pam

dear pam and muppo,
Of course you are both right, that I need to keep my spirits up. Sometimes I get so weary. I ask myself, “when will I wake up in the morning, and feel normal?” I just want to walk in the kitchen, and have a nice hot cup of real coffee, like I used to do. But, I know that isn’t going to happen.
I have been on Verapamil since Dec. 24th, so 21/2months. I did try to go to 240, but it scared me terribly as I got so sick from the higher dose. I have since learned about going up SLOWER. I read that Dr. Hain loved effexor so I got some, the real kind, not gereric, and divided it into three’s, as per his advice, and sprinkled the one third on applesauce. It made it so sick, it was 3 days before I could even go outside for a walk. He does say somewhere that I read, that if the pill isn’t good for you right at the start, then it’s NOT the right pill for you. Do you think that is correct? I think Verapamil has the least side effects for ME, but how do I know? I’ve only tried effexor. Maybe a much higher dose of Verapamil like you take, Pam. I wonder HOW can you take so much?? How did you get yourself UP there…very slowly or how? I wonder how you are feeling? Do you think you are 80% or are you still very dizzy all the time, or do you think you are much better because of the verapamil? I feel kind of excited that you are taking Verapamil ( my drug) and are taking so much and are still alive!!! sorry, !! I just had a chuckle because this is so sad, and I am so dependent on someone I don’t even know , but now you and muppo mean the world to me. So, hopefully I will stay on Verapamil and try to get higher and higher on the dose and I will go see Hain. I hear he does NOT to phone consults any longer, but we talked to his receptionist thismorning and they are expecting me.
Thanks. Chin up, no negative talk, positive thoughts. I will try and thank you for helping me. I was diagnosed in Dec. so I’m still kind of new to this . spinning lady ( Meredith)

Meredith (I love that name - from Grey’s Anatomy)

Believe me when I say I was suicidal when I slipped down to my worst. No joke. I told my parents ‘I’m not living like this, I’m checking out’. Not easy for them to hear their daughter say that. I got slammed 11th Nov 2010 but by early Feb I could hardly get out of bed and by March, I was written-off completely.

1st March is when I took my first 5mg Nori. It hit me like a rugby player. The weekend that I took it I was home alone and hysterical. I had friends on the phone to me morning, noon and night because I had hit rock bottom and was too ill to even feed myself. This forum saved my life in every which was possible.

Looks, these drugs are f*ckers. No doubt. But you MUST push through until you really know if its fear+side effects doing you in or if the drug really hates you.

I have accepted that my brain will never go back to 100% normality. Acceptance was a 1/3 of my battle with this b*tch. You are NOT alone. You need to re-define ‘normal’ and your current reality.

Have faith. Faith might be a long way off and come from a multitude of pills, but faith is there. Also, make sure you’re taking the right supplements to aid your battle too.

I take:

Magnesium Citrate 500mg
Fish oil 1500mg
Gingo Bilba (Trebonin brand)
COQ10 150mg
B Complex 100 (so a full dose of all the b/s)

All of the above aid the fight in migraine and cognitative function.

Just a suggestion.

Peace out x

Hi Spinning lady,
Everything you wrote is exactly how I feel. I have been trialing meds through my local neurologist and am considering going to Duke as a few others have on the forum. I even spoke to Dr. Gray, but after reading about various people’s experiences there, I am not so sure. I’ve never seen more of the famous docs that are referred to on this forum for so many of the same reasons you have written. I am not sure what they can offer me outside of more of the same meds which my local neuro knows about. Maybe others on the forum have had different experiences from spending time and money to see the MAV experts. I did see many docs locally and most seem to agree I might have MAV, although one told me the constant rocking I feel which goes away completely in the car is Mdds. I am trying to ignore that diagnosis as there is no treatment from what I understand. I live in California and I considered trying to see Dr. Baloh but then decided not to as I have already tried so many meds. Maybe I should go see him, but to be honest I am scared that he will just confirm I also have Mdds.
Hang in there. It is so very hard to figure out what to do and who to see.
Christine

hi Christine, I used to live in Boston, Mass. and out there they say " It’s a wicked pissa" That’s what it is, all right. one big wicked pissa!!! My hubby just gt home from golfing and he brought home dinner for me. Going to eat something, think all this through again, and get back to you. spinning lady ( meredith)

I have seen one Dr. at the Mayo Clinic in Mesa Ariona and he made me wait and wait and then told me “all I do is ears” , and I went to Dr. Wolf in Phoenix ( he is a neuro-opthamologist, I have double vision and thyroid problems) he made me get an MRI and blood test, never called back, lost the blood test compleltelym and we called his office at east 5 times to find out about the mri. He was rude, short and does not want to hear the words MAV. No Dr. really wants to hear those words. I went to la neurologist here in Mesa and he said he specializes in Alzheiers ( sp) and said" I’m not a dizzy Dr… I have spent hours on the phone setting up appts , going to appts, waiting, and have gotten absolutely nowhere. The only Dr. that was any good was a o-tologist in calif.at U.Calif. irvine and he diagnosied me with MAV, after someone in Iowa had told me I had Meniere’s disease and I went on a low salt diet all summer and lost 14 lbs. ( didnd’t really need to, but wow, really looked good!!!ha) but I have put that back on since. SO, Dr. and Dr. and the only one I trust is the first one . His name is Hamid Djalilian M.D. Director of Otology and Neurotology University of Calif. lIrvine, Ca. He looked at my history, checked my hearing test I had done in Iowa and said " You don’t have Meniere’s at all, You have MAV". He put me on vit b and mag. and gave me some xanax but I got worse and worse so he gave me verapamil 120 and I went up after two weeks to 180 with no problem. Tried to go up again after two weeks to 240 but WHOA!!! could not do that. We are in this together and I’ll tell you, it makes me feel better to have some people that understand, to talk with. What meds are yu taking? How are you doing? How long have you had this? I’m sorrry for you and for me and for all the gals, but two gals just told me that I MUST be positive and keep trying and not give up, even tho I felt like lit today. xoxo meredith Spinning lady

Hi Meredith
You’re still in a spin by the sound of it! I had same problems with the diff diagnosis from several docs but when I eventually found this forum I got my local doc to give me a few drugs to test, eventually ending up with Dothiep. I still think it was worth my trip to Sydney to see Dr Granot who treated me with care & respect - sent my GP a management plan with instructions to contact him if/when necessary. This seemed to take a load off my shoulders and my anxiety levels dropped considerably, as I’d at last got some help from an expert who understood MAV and if the Dothiep stopped working I could have expert advice on trialling another drug. I’ve accepted that I’ll probably never be 100% again but hey, 80% would be good!
Although it took a few months I’m sure that upping the meds very very slowly really helped my body accept the higher doses.
Hope you stop spinning soon and your visit to Dr Hain is worthwhile.
Barb

Hi Meredith,
I have seen both Dr. Hain and the folks at Mayo. Truly, I have learned more from this forum than anything I got from either of those places. You are right…if you see Dr. Hain, he will prescribe one of a few classes of meds that treat Migraine. Effexor is his favorite. A doctor at UCLA favors Celexa (an SSRI/antidepressant) and yet another favors Nortriptyline. Actually, many seem to go for Nort…it’s a very common drug on this forum. Anyway, the drugs have about the same success rate, but they try to prescribe them based on other symptoms you may have. If you have anxiety and depression, an antidepressant is the one. If you have high blood pressure…a beta blocker…etc…It’s a bitch to ride the med-go-round, especially if you’ve had a bad experience. I was crying my bloody eyes out when I thought I had to go through this…but after 2 1/2 years on cocktail that works for me, I’m doing well.
You are allowed to have your down days…we all do. And we all understand. What’s important is that you have the fight in you to DEMAND your life back. Once you get that mindset, you are willing to swim the river of shit to get to the other side.
SOrry you are down, but things will get better!
xo
Kelley

Hi Kelly and Barb,
Thanks for all your kind words. I am going to stick with Verapamil and go up slowly. We cut the 40 mg. into forths and I take one twice a day and will for another week then go up another 10mg. et. until I get to 240 and stay there for a while. I am the worst with meds and always have been very sensitive to any drinks, like even beer. My husband says he married me 'cause he could get me drunk on only ONE beer. Cheap date.! I have a bottle of nori on the bathroom counter, 10mg. but don’t dare take one. Too afraid. You know, I live in the mid west in the USA and some of the drugs I read on this forum are from England or Aus. and they don’t have them here. I wish they did, especially Pizotifen. That sounded like an easy one to take, but they don’t have that here in the usa. oxoxo love hearing from you
Meredith …pinning Lady, opps Spinning lady !! By the way, I AM taking one 180 verapamil each day and adding the other slowly.

HI there,

Just wanted to pitch in and say I have had this condition about ten years. First two years were hell until I found a drug that controlled it. Long periods of time go by when I am not on the board because I am busy, this wasn’t true for the first two years before I knew about this board and was on another board. Then I was on all the time as I was so ill and disabled by it. I doubt I will ever be completely out of the woods but apart from relapses from known triggers, I live a mostly normal life with the limitations brought by having to get regular sleep, avoid certain foods etc…etc and intermittent reminders that I have this. My life is different now, I function differently, but nothing like the hell I went through at first.

I hit the suicidal point in the first two years, very glad I never went that route. It can get better. I trialed countless drugs before finding one that stablised me. I work in a hugely high pressure, very stressful job intermittently - I take time off inbetween as I’m freelance, and I am able to do things that were impossible in the initial stages and never thought I’d be able to do again.

H

Hey!!

Yes I take 3 daily preventatives. I have never in my life taken this many meds. I was desperate to feel better, like mentioned above, I simply didn’t want to live the way I was feeling. Dr. Buchholz, another leader in this MAV thing, says to give all meds their fair chance to work. He said that sometimes the symptoms that we feel after taking the meds is not at all from the med, but just that our MAV symptoms are still at work and that we just need to stick with it for the full 8-12 weeks.I hate that every doc has a different favorite med, a different thought on meds etc!!!

Pam

Hey Meredith,

I loved your post and venting is so good for you. I cried when I read Muppos second response because it’s horrible to think we are forced to accept this bulls***t!

Anyway, I can’t believe you live in Arizona and you have not seen Dr Fife. He is considered one of the best Mav doctors in the world. He did his speciality training in Oto neurology at UCLA with a doctor who is considered one of the best. Dr Fife has written countless articles on this Subject and my neurologist who is considered a top doctor sent me to him. I saw him 3 weeks ago and he diagnosed me with Mav. I had never even heard of MAV. Like everyone else here, I had been through the ringer with doctor after doctor, all the tests etc etc and he was the first dr to not give me that perplexed look and think I’m crazy. He is the director of Barrows Neurology here in Phoenix and knows this stuff inside and out. I cried when he looked me straight in the eye and said this can be treated. He put me on Imipramine which is in the category of Tricyclic anti depressants. I just started my full dose this week and I am noticing a substantial improvement. I am nowhere close to 100% but just this small improvement gives me hope that I will get out of this hell. I am up doing more things, playing more with my son, being more productive etc etc. I still have difficulty driving. I can only drive a very short distance but even that seems slightly better. I’m hopeful that after several weeks on the full dose, it will improve even more. As far as the side affects, the first night I was nauseous and threw up but after a few days, it subsided. I have a low tolerance for drugs and hate them, but I’m willing to do just about anything to have my life back. There is NOT a single aspect of my life that MAV has not affected. It’s a beast!!!

Anyway, let me know if you need the information for dr fife. I can also send you one of the articles that he wrote. Someone here posted it somewhere. I met someone on here that said dr fife saved his life. And I believe he’s going to save mine!!!

Take care. We are in this battle together.

Mary

MARY DEAR,
THANK YOU FOR YOUR POST. i CRIED TO WHEN i READ MUPPO’S LETTER AND NOW ALSO FROM DEAER hANNAH. WELL, SHOOT, i HAVE FELT THE SAME WAY, NO DOUBT ABOUT IT. i DON’T LIVE IN aRIZONA, BUT i COME HERE EVERY WINTER FROM Dec. thru April and we come down here with a lot of couple friends and play golf all over the place at different courses and we play bridge and eat and just have fun being retired and “free”. We tried to call Terry Fife when i first found out I had MAV. That was in Dec. and I was in Calif then visiting my younger son and wife. We called the Barrows Clinic they said first appt available was in the following Oct. Can yu believe that? I went to the Mayo Clinic here in Mesa, AZ AND their Dr. there said he only does ears!!! ohmy god. I had even asked before I made the appt ID THEY KNEW ABOUT MAV just to be sure it wouldn’t be a wasted appt. and it was anyway. I asked the Mayo if they could get me in to see Fife sooner, thru their influence, but they said they tried and couldn’t get him to take any more clients. SO< that’s how Dr. Hain came in the picture.
I am still here in Arizona, but we are packing, or i should say Dale is packing and I am so dizzy that I am mostly sitting in the chair or lying down. We are expecting our son and wife from Calif. tonight and they will help us get things carried down stairs and put in the car and help get the house we rent here all cleaned up and ready to leave. Then Sunday we will start driving home to Iowa. We plan to take it slow and take 3 nights on the road and arrive there Wed. My appt with hain isn’t until Mar 23rd. I am going to take your email with me and show him what drugs you are using and let him see your success. Please sent me any more pills or anything you have tried and had good luck with.
I have a new house i live in there i Iowa, on a lake. We built the house ourselves almost except for a few things like elect. and plumbing etc. it is really a beautiful home on a pretty lake, and right next door to me lives my older son , wife and 3 grandchildren. They are older now, one is 21 and then 20, then 12. He, little Jake is the apple of my eye, of course. I was having a perfect life, after a long marriage of 46 years ,working hard along side my husband Dale all those years, to finally be able kto retire and NOT work so hard and then suddenly I get MAV and everyone’s life has changed. My children are worried to death, my grankids think G’MA is dying, my friends don’t know what to do or what to do FOR me, and ask all the time but I don’t want to be a burden and don’t want to talk about it much as NOONE really has a clue as to what I have and HOW it makes me feel, and some are just plain blunt when they say" never heard of it"!!! So, you know the expression, Smile and the world smiles with you, but cry and you cry alone?\"?
Anything you are doing, taking and you think is helping is of interest to me. Thank you Mary. I picture you as a little princess, I just wish it wasn’t a mavprincess.
xoxoMeredith spinning Lady

Meredith-
You might want to try and get on the cancellation list for Dr. Fife. Are there any universities, etc in the town in IA that you live in the rest of the year?

Hey Meredith,

Sorry you are feeling so confused and run around - it can be a long road to a correct diagnosis, let alone correct treatment. It is the nature of the beast unfortunately. I hope you can take heart that plenty of us here do get very well. I’ve had this shit for long enough now that like Muppo, I’m fairly accepting that there will always be bumps in the road but most of the time I am fine.

You’ve been given some great advice already re meds and doctors so I hope something works out for you soon!

Vic

Hi Teddipan and Vic,
I live near the border of Minn. so Rochester, Minn is where the Mayo Clinc is located. But, noone in the little town we live in. But, I am still happy that I have the appt with Dr Hain. I have heard he is very patient and informed and knows his stuff. Mav Princess, I looked up Imipramine and that i unusual and has been around a long time, but if Dr. Fife likes it, it must be good, and it seems to be helping you. I am very happy for you to be feeling even just a little better. It gives hope and that is what we need. I looked up Dr. Fife and read a good deal about him as well as Dr. hain. I think beig close to the Mayo Clinic is good for me also.
Sometimes I wonder if this is harder on the younger gals that are having babies still and trying to raise a family, or harder on someone my age (66) that is not as strong and youthful any longer and maybe can’t handle being this sick or shake things off as easily as someone younger. I do know this is hard on my dear Husband, Dale and he is going to be 70 in June, although he is still SO handsome and looks only 50!!! ( smile) love all you girls and thanks for all the information and caring. Meredith

Hey Meredith,

You are right about imipramine being unusual because not a lot of people on this forum have taken it. But it is a Tricyclic which is very popular as a first step in getting rid of this beast!!! I have seen it mentioned here but not as much as others. I looked on webmd and it also states Tricyclic anti depressants as a choice for treatment. I believe it also has the least amount of side affects of all the meds. According to his article, I believe it states that it works 89% of the time. I’m sorry you couldn’t get in with Fife but sounds like you’ll be in good hands with Hain. Please let me know how it goes.
As far as your comment on who this is harder for, I believe it is hard for all who suffer it. I had to go out on a medical leave from work because I could no longer drive. Driving for me is the absolute worse. I did it for a lot longer than what is safe. So now I’m raising my 4 year old on no income and that is so scary. Plus I can’t do a lot of the things that my poor son deserves to be doing at his age. I believe that weather you are retired, new mom, dad or any stage at life, MAV affects every single aspect of your life. We all need to beat it so we can have our lives back. I’m desperate to get back to work.

So hang in there. Let me know how things go.

Mary

I wanted to write in since I just found the forum today. I started seeing Dr. Cary at Johns Hopkins recently and his handout on migraines included the forum. I am extremely grateful I took the step and went to Hopkins. I was being treated for Meniere’s without any success and even ended up in the ER with GI bleeding due to the dietary changes. I instinctly knew that the doctors were on the wrong path and booked the appointment at Hopkins with the head of the neuro-otology department. For those of you on the East Coast of the US, waiting to see him would be worth the wait. For me, just recognizing my symptoms (chronic headache and motion sick feeling and episodic vertigo that lasts for 20 minutes to 2 hours and ear fullness without hearing loss) as migraine was lifechanging. I travel internationally all the time for work and pleasure and I was developing so much anxiety surrounding travel that I was contemplating changing careers. I completed a recent trip without incident and only a couple of swimming head moments and I am sticking to the migraine diet and supplements, and am hoping the meds he gave me just in case will not be needed. One of the other hopes I have is that the current status quo after 2 and 1/2 years will likely be the same. Any thoughts on that? I notice most of the posts reference changes over one’s life. I can remember different things from my younger years that lead me to believe I have always had some form of migraine but I am not really sure.

Thanks for creating such an important tool for those who are challenged in this way. I will be looking for and reading more posts.