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.
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.
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?
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’t 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)
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.
HI Lisa, yea I have had migraines all my life as far back I can remember so no they didn’t start after my bypass. One of the perplexing issues my doctors have had is my pain migrates all around my head. Some times it may feel as if someone has shoved an ice pick through my eye. Others it feels as if I am about to sprout a pair of horns through the top of my head. A majority of the time it is not localized to the left or right side. My ENT doc who took the tumor out also said there was no relation between it and my headaches. I have had a couple of times in the last 4 years where my stomach has went ‘south’ so to say. It would feel like I had swallowed a lump of charcoal. Just burn and burn. I now take Protonix and Sucralfate. I have had Scope and CT scans of it and they come back normal. My gastric doctor who did my last scope told me it was by far the best bypass he had every seen and no lesions. I am going to assume you have, but have you had blood panels done, specifically Iron? I have to stay on top of mine and from what I keep being told it is worse for women who have had the bypass. Twice in these 4 years my blood and iron count have dropped too low. 1st time I had to have 6 pints of blood. 2nd time I had 6 weeks of IV iron.
As for medications, I have tried most of the triptans, including Zomig. I my last one was the Imitrex injection pins. I got 10 of the injection pins. I would say 5 of them actually made the pain worse instead of better.
I have been a little disappointed with the background I have been finding on the Mayo in Arizona, but it is the next ‘hope’ that is keeping our house going. Giving in and saying this is it and this is all it is every going to be isn’t really an option for my wife and daughters. I won’t lie and say ‘oh yea I am gonna be cured at the Mayo’, but I also can’t give in and echo the voice of the doctors who have said I will live out what is left of my life inconstant 8-10 level pain either.
Hey dMack, yes I have had all the nutrition panels run on multiple occasions and everything is always in the normal range.
And you are right, we always have to keep fighting, fighting to find something to make us “better” even though it may not make us “well” not only for ourselves but also for those who love us. It hurts them to see us in so much pain. So I wish you the. Rey best of luck with Mayo. I hope you get one of the best doctors they have!!
I’m so sorry you’re going through this. But it is definitely time for a change. Going to a Headache Clinic could help you tremendously. As Jamie mentioned, I too have been to the Jefferson Headache Center in Philadelphia. I wrote about my first in-patient treatment here: https://migraine.com/blog/headache-camp/
I don’t know any specifics on the Mayo Clinic but it seems like it close to where you live. If you want to research other similar clinics, check out the Michigan Neurological and Headache Institute and the Diamond Headache Center in Chicago.
I suffered with migraines and non-migraine headaches all the time from the time we moved to Denver when I was 5 until I recently moved to Phoenix at age 53.
Not only do I not have my daily non-migraine headache since moving to Phoenix, but no migraines either even when I do things that would always give me a migraine in Denver. (Not that I try to trigger one.)
I have had just a few non-migraine headaches here in Phoenix, but they were much much less severe and not nearly as often. OTC Tylenol got rid of them.
For people who have tried everything, I suggest taking a vacation to Phoenix or Tucson and see if it works for you too. I noticed the first week here what a huge difference it was.
If thinking of moving here come in summer first to see if you can handle the heat. I am willing to take the heat compared to living with those horrible migraines.
I still use beta blockers daily and always will for prevention.
What a relief it is to not have to constantly be taking prescription pain killers and triptans all the time!
I am a long time patient of the Diamond Clinic in Chicago. I was one of Dr Seymour Diamond’s first patients when he opened the clinic in the 1970s, and then I was his daughter Merle’s patient from 2000 to 2012.
Their inpatient clinic is very successful in breaking medication overuse headaches. I can honestly, but regretfully, say, that I have not had much luck with preventative meds through them. I stopped going there after a 12 day hospitalization in 2012 failed to break a 6 week long headache (which is still going strong today).
There were other medications and categories of medications which I had never tried and expressed interest in trying, but somehow I was kept on the same meds which just never seemed to work. I felt I was not being heard, and not allowed an active part in my own healthcare.
I currently have an appointment for October 9th at the Jefferson Headache Clinic in Philadelphia. I read about it on migraine.com, and their inpatient unit was ranked better than the Diamond inpatient unit by people who had been to both.
I wish you and your wife luck in your journey,
@jules2dl – Nice (but concerning) to hear your long-term experience with Diamond. I’ve considered them several times, but something always complicated getting there. It is first-hand experiences like yours that help reinforce my skepticism. Along with increasing frequency of headaches, it is mostly a break in the constant “throw another preventative drug that wasn’t made for migraine at it and see what happens” of the Neuro rollercoaster that I’m really struggling to get away from. If the difficulty of getting to see someone at Diamond only leads to that, I can just do that with any other run-of-the-mill Neuro. No thanks.
SO just to share information here is my follow up, sorry it took so long. I had my appointment with the Mayo Clinic in Arizona at the end of July.
We went with the philosophy of being there until they could do/find something to help 9(we ended up being there a week). We gathered as many doctor records as possible as well as my original MRI from JUL 2010, last full MRI from OCT 2013, and a focused neck MRI from FEB 2014.
My Office visit went well I thought. The neurology resident we saw was attentive and thorough. She left and reviewed my MRI’s and medical records and came back with her supervising Doctor (a headache specialist neurologist) to go over the “plan”. They ordered a full blood panel, a MRV of my head, EEG, & a Physc consult. Not exactly the “plan” my wife and I were hoping for after driving over 700 miles. We knew what the results of these test would be as they have been done multiple times (which we expressed to them).
The best part of the Mayo clinic is they are technologically advanced. Their smartphone app gives you access to information very quickly including test results and doctor notes. My blood work came back within norms as expected. The MRV showed no abnormalities. The EEG was abnormal but they attributed it to the fact I take benadryl. The physc consult went OK and then it was back to the original Resident.
She came in and we went over the test results and laid out my care plan. She said since it had been over a year since I had stopped taking Topamax it would be first. I told her I had taken it for almost 6 months before and it never did anything. Response was that since we didn’t know what dosage I took before she wanted to try it again and ramp up the dosage. She was happy with the Paxil and Neurontin given to me at the Physc consult. I asked what was the plan to break the pain cycle I had been in since June of 2010 as I didn’t expect any of these to do that. She said she would give me a 7 day Medrol pack and it would (it didn’t). She also said that I was to stop all caffiene and narcotic pain killers (the only 2 things I said sometimes help during my 1st visit). I don’t take Vicodin much as it doesn’t help a lot and I worry about MOH and rebound anyway. At this point she went to consult with the supervising Doctor (different than the 1st visit). They both came back and he said he was happy with her plan. We expressed some concern that there was nothing they were doing at this point that had not been done before. He said he understood but they had to start somewhere and that “this didn’t happen overnight so it wasn’t going to fixed overnight”. He then said to come back when our resident was back on clinic rotation.
A week after returning home I fell and broke my ankle. I fall regularly since this started (which all my doctors have been informed of) 4+ years ago and figure very conservatively to have had 400 ‘hard’ falls and this is the first broken bone and no cuts needing stitches (which I am thankful for). Just for an idea of the constant pain level I stay at I walked around on my broken ankle for 5 days before my foot turn purple enough from bruising that I went to the doctor to get it checked out. When he asked why I waited I told him it never hurt enough to over come the pain in my head.
With my ankle and other finical reason I have now had to push my follow up with the Mayo from September to her next rotation in November. I in no way am implying that the quality of care I received was bad, but so far it has been no different than the quality of care I have received at less ‘renowned’ facilities a lot closer to home. I am still in daily constant 7-10+ pain, I still have tremors in my hands and limbs, I still fall, I am still sensitive to sound/light/smell, and am still nauseous regularly.
I don’t want to discourage ANYONE from going to the headache clinic at the Mayo in Arizona. We are all unique individuals and will respond differently to treatment. I just wanted to share my experience.
I’m saif from jordan 22 years old ,, i have been suffering from migraine 15 years ago and still, it destroying my life i can’t study or work or have fun or doing anything in my life .
Right now I’m in San Diego California, I’m leaving after 2 weeks , so i see this as agood apportunity to go to a good specialist that can help me ,, i wich you can tell me the best doctors for migraine in san diego
Thank you in advance
It can be very hard to get an appointment as a new patient with any headache doctor. But try to explain your situation and your time limitation. I hope that you are able to get an appointment!
When you go back to Jordan, do you have access to doctors who deal with migraine? You may want to visit the website of the International Headache Society. They may have information specific to your country. http://www.ihs-headache.org/
Please let us know if you have questions and we’ll do our best to help!
I go to Jefferson. My doctor visits and hospital stays are covered by my insurance. I have a deductible of $3,000 that I have to pay each year and since I usually do in-patient twice a year, I always need to pay that amount.
I have to cover traveling expenses from DC, but that’s not very expensive. It’s a 2 hour train ride. When I’m in the hospital, my mom and boyfriend stay in a hotel so that’s an additional cost.
In my case, I probably spend about $5,000 a year in travel, deductible, and ketamine nasal spray prescription (which I use at home and costs between $75-$100 per refill). It’s worth it. I rarely go to the ER. I have a treatment plan that is manageable on a daily basis and I feel like the doctors listen to me and treat me respectfully. I have piece of mind.
Wondering if anyone could help or had any opinions.
I’m 21 and have been suffering from migraines since I was about 10 years old. Now the last two years I have had NO break. I have a migraine every single day with the pain starting at a 5 in the AM and going to a 10 by night, or even starting at a 10 when I wake up. But over the past year they have gotten worse. I usually lose my vision 5x a week, black out from the pain, cannot sleep and my appetite in the last few months has completely diminished to almost nothing. I currently am under Tricare Prime since my dad is retired military I was able to stay on his plan since I am barely working part time with how much pain I’m in. Now I go to Walter Reed in Bethesda, MD. In my opinion they are probably the worst hospital on the East Coast. I have been trying for several years to get help and to manage the pain I’m in every day and the last few times I’ve gone I was laughed at by the doctor and nurse and called a liar. I have since started looking for different options. I am on a wait list to get into the mayo clinic in Rochester, Minnesota but the earliest date I MIGHT be seen is June 2018. I have researched other clinics in California and New England. I have even been in contact with a hospital/clinic in Kiel, Germany for a 4-5 week stay to see if I can get these under control there. I am honestly desperate as this has started deeply affecting my life to the point I’ve gotten severely depressed. Any help or suggestions on who I should contact for help would be greatly appreciated.
@rebekahann15 Since you are going to Walter Reed, I would suggest either Dr. Jessica Ailani or Dr. Carrie Dougherty at Georgetown University. I personally owe them a debt of gratitude for helping me when I became chronic.
You should also look into the Jefferson Headache Clinic in Philadelphia. Great docs there too!
With any headache specialist there is going to be a long wait time, probably 6-9 months. But to see a doc who only treats migraine patients is worth the wait.
Hi all, I want ask about Migraine clinics too. I am looking at 2 place and want anyone’s opinion. The Michigan Pain and Neurological Institute and the Cleveland Clinic. Michigan was pretty nice on the phone whereas when I tried to call Cleveland, they put me on hold for 20 minutes then told me all the information was on the website, which it isn’t or I would have to find out what I needed to know from the doctor at my first visit. I would have to travel down from Canada at great expense so this just would not work. I hung up in tears, the woman was rude and dismissive, she did not even seem to know what her own I Match program was. Anyone have experience with either. I have to pay out of pocket being Canadian so I want it to make a difference. I have had chronic migraine for 30 years, now daily.
@dmack — please update us on the status of your migraine. I know it has been 4 years since you posted, but you and I have almost the exact same story and since you started it I would hope that you have found peace by now.
@rebekahann15 — I have been to mayo in Rochester (December 2015) and did not get any answers. The 2 “probable diagnosis” I got — sarcoidosis, or CIDP were no where near to be correct. I have been treated for both : IVIG for the CIDP. BTW be prepared to fight with your insurance to get that approved. 1(ONE) round of treatment costs $65000 (it did for me — the meds cost med/kg and my dose was $13000 per dose for 5 days) AND it did nothing for my migraine. The treatment for the sarcoidosis was cheap but didn’t work either.
I have read on other forums that the care and attention you get from the mayo in AZ is strongly in need of improvement.
I would strongly vote AGAINST topomax. I have that drug to thank for kidney stones that required admission into the hospital and a 2 week stay to get the infection under control. Both times.
On to my question — has anyone tried the new med Aimovig? Did it work? Their shipping me to doses for free . You just need your doctor to fill out this form ” Service Request Form” on this page https://www.aimovighcp.com/support-and-resources
Please let me know if I am chasing the rabbit down the hole again with this new drug. And I would love to hear the end of your stories.