August 30, 2013
My wife has been suffering with debilitating migraines for over 2 years now. She sees a local specialist however I think its time to get her referred to one of the top clinics in the country. The Diamond Clinic in Chicago, Johns Hopkins and Mayo Clinic in Arizona were the three recommended by her doctor.
Has any one had any experience with these three? I haven't been able to find that much information on what the top 10 clinics in the country would be other than some random sites. Thanks for your help in advance.
Nancy Harris Bonk37
August 30, 2013
I'm really sorry to hear that your wife has suffered for so long. It is exhausting to be in chronic pain and truly impacts the entire family. Let me see what information I can give you about clinics, OK?
I've not been to any of these clinics, but know others who have and had mixed experiences; some were wonderful, others not so much. It's a better idea to seek out the expertise of one specific migraine specialist rather than a clinic. Depending on where you live, there may be a true migraine specialist in your area or not far from you and top migraine specialists aren't necessarily found at clinics, but run solo practices. We have information on this topic in this link; https://migraine.com/blog/how-are-migraine-specialists-different/ I hope you find helpful.
Let me know what you think, OK?
August 30, 2013
Hi jwitz - The important thing to remember, is that it's not the clinic that makes the difference, but the physician your wife is working with. Certainly the clinics play a part, but the doctor is the person who directly influences care. Do you know which physicians she might like to see at these clinics?
June 9, 2014
Background with a Question to follow.
Today is the 4 year anniversary of my current migraine. I have had and occasional migraine since I was a kid. But 4 years ago today I had one start that has not stopped. My visit last week with my the neurologist in Amarillo resulted in yet another Doctor telling me that the pain (constant 8-10) is what it is and I will have to just deal with it. I am currently under the care of my primary care (in Dimmitt TX who is awesome), a pain management doctor, neuropsychologist, ENT (had Submandibular Gland tumor removed a month ago but it was benign), and neurologist. In the last 4 years I have been through the gauntlet of medications and treatments. From Triptans to opioids to BOTOX to acupuncture to chiropractor (who told me to man up and get over myself, not a good day) and all to no avail. When this started I went 2 weeks (because of a work trip that involved school kids) trying to self medicate the headache away like I had always done in the past. Tylenol, Advil, goody's powder, Excedrin migraine, ice bags, dark places and nothing worked. We got back from the trip got the kids off to their parents and my loving wife took me straight to the ER. First thing they found was my hemoglobin count was under 4. It should be over 14 for a guy. I was admitted and got 6 pints of blood that night. Next morning I got scopes from both directions trying to find the leak (cause I had not seen blood coming from either end). I spent 5 days in ICU with them trying to determine where the blood went. When I repetadly asked about my head pain they said it was from the low blood volume. They sent me home and I began my search for answers. The gastroinstenal doctor I followed up with said it was from the NSAID's I had used and they fact I had an RNY gastric bypass (2001) He told me 'you no drink beer, it no good luck for you and you no take NSAID's' (I am not trying to make fun of this man, he was from China but his lack of communication skills was very frustrating).
Next up was a few months of experimentation through my primary care doctor at that time (after my MRI came back clean). He tried Max-alt, Imtrex, fioricet, and hydrocodone. While they did not stop the pain they did allow me to continue to work (I was a school librarian aide as I was tyring to finish my degree to be a teacher). My job at the time entailed a significant portion of my day spent in elementary schools (including working in the cafeteria every day). Now I am not sure if any of you have ever spent much time around elementary school kids in either a library (I mean a good library where kids are encouraged to read and to be kids) or at lunch in a cafeteria, but it is LOUD and bright. 2 things that I am extremely sensitive to when my migraine is in full out mode. By the beginning of October I was taking either fioricet or hydrocodone everyday at lunch to be able to make it through the rest of my day after spending lunch in the cafe with those kiddos. Of course by Halloween even that no longer worked. By November nothing my primary care doc was giving me was able to get my pain level low enough for me to be around kids to do my job. He got me a referral to an ENT and to a neurologist. ENT did and examine and a CT and said there was nothing in his realm and to wait for my neuro visit. My first neurologist visit was by far the worst specalist visit I have every had. He was in the room with me for all of 5 minutes (I swear), glanced at my paper work that took me 30 minutes to fill out in his waiting room, did the reflexology test, had me walk across the room and back, took the CD of my MRI (didn' look at it) and told me it was rebound and to stop taking ANY medicine for a month and then come back. This was 2 days before Thanksgiving and they scheduled me to come back after New Years. I remember nothing of that holiday season but pain. During this time we moved (by that I mean my wife and kids moved us) which lead to a new primary care doc who said that was not the neurologist to see. I have been unable to work since November of 2010.
Since then (had to skip a lot or you would be reading all night/day) I have been to see over 20 doctors. These have included nationally recognized doctors like DR Hertzog at Texas Neurology in Dallas for almost 2 years before we moved to the panhandle of Texas from DFW, the PNP Center in Lewisville (you may have heard of them on DR Phil, I would not recommend them at all as I was called a liar by one of their doctors in front of my family and several other doctors and they sent me to a chiropractor who told me to man up it wasn't that bad cause my pupils never changed while I was in his office). I like many of you have had good and bad doctors. Because nothing that is usually used to treat migraine has helped me (quite a bit of it has actually made matters worse as I seem to be the poster child of side effects) I have come to be hesitant to even call my pain a migraine anymore. To me it seems more accurate to call it head pain.
Now finally to my question: I had a follow up with my primary today (thanks to pain level through the roof along with anxiety and frustration caused by the office staff messing things up with my appointment and insurance, my blood pressure was 160/110 at my neurologist last week; which got me a new prescription of verapamil but they didn't want to be responsible for managing my blood pressure) and we told him where they were in essentially giving up and saying 'this is your life cope'. We ask him what we should do next and he said 'I am going to get you to the Mayo Clinic in Arizona'. Now the question is I have seen a few of you get refereed there and I wonder how long that process takes?
Verapamil & Trazadone (both new from last week)
Protonix & Sucralfate (to keep my stomach in check)
Phenergan (for the wonderful nausea we all get to go with this pain)
CPAP (to try and help with sleep)
Thanks for listening
August 6, 2018
@dMack Just came across this posting. Wondering if you have finally found relief for your multi year migraine? I've been dealing with a 6.5 year long one myself. 24/7 migraines are no fun.
June 10, 2014
dMac, I am so sorry you have had such a rough time. I find you and I have a few things in common that others have not mentioned. I also had a gastric bypass but my migraines started about 4 months post surgery. I am assuming the weight loss changed my hormone balance which lead to the migraines. You seem to have a much longer period between your surgery and the start of your headaches and are male so I doubt your migraines are hormone related which I am convinced that at least part of mine are as a 48 year old female. Second you mentioned a submandibular glad tumor. Are your headaches on one side of your head and if so are they on the same side as your tumor. The reason I ask is because I had a Warthin's Tumor, which is a tumor of the salivary gland directly in front of my right ear and my migriane's are almost always on the right side. I have asked multiple of my doctor's of there is any relation to the two circumstances and they keep telling me no. Also my barbaric surgeon swears there is no relation between my gastric bypass and my headaches even though the timing leads me to believe otherwise.
Also I see you have tried MaxAlt, but have you tried other triptans? MaxAlt only worked for me for a short time but I am having better luck with Zomig.
One other note, in some of the other threads on this site, other migrainers have mentioned less than successful results with Mayo clinic. If I can find their posts I will add links for you to reference.
Wish I could help more.