I need your input. I’m forever being asked what I know about particular headache specialists or clinics. I know the ones I’ve seen and that’s about it. You’re the expert on what you’ve experienced. Please share your opinion by commenting on the doctor who treats your headaches.
Fine print: You may identify the doctor or clinic by name, but be nice even if you didn’t think much of the doctor. You can point out what you disliked without trashing the person. Please keep in mind that people have differing opinions about particular doctors. I will delete inappropriate comments.
Hello sir I’m sameera iam suffering with headache from past 7years all the day i have pain in my head and I am smelling blood in my nose this is actually irritating me i just want solution for my problem could you please give me suggestion and i want to know why I’m suffering with this worst headache
I have been a patient at the Pittsburgh Headache Clinic for about 3 years. I was just doing a medical history list to give the next doctor we are trying when I realized that in 3 years the only thing he has done for me has been to increase the dosage of meds my family physician had tried and found to work. If the usual headache medications will work they will cycle you through them until you find one but they won’t give you anything experimental or that worked for someone else but isn’t a “normal and approved” migraine medication. I am an unusual case though so they have been no help at all for me.
I will say that I always see the same doctor, he takes his time with me and listens, and seems to honestly care. For a more “normal” headache sufferer they would probably be great but if you are trying to get in there because another headache center didn’t do the trick then don’t bother.
I just spent 9 days with my daughter, who suffers migraines daily, at Diamond Migraine Clinic in Chicago. She was admitted to St Joseph’s Hospital. Our experience was horrid. They have a migraine unit at the hospital but you may be placed on a different floor in a double occupancy room where family can not stay. It seemed everyone is admitted to the hospital. There are many classes but I found them to be smoke & mirrors. You are mainly seen by residents & PA’s. Do not believe what you read on their Web site from the washing machine & drier (which didn’t work) to the types of services available ( we don’t do that here). When she was released we requested a game plan to follow when she had migraine & when she would be admitted to the hospital due to hypertention. The Dr refused our request 3 times telling us we could sign up for after care ($500) & would respond in this matter. Each call & email you are charged from $50 to $150. It seemed each pt was receiving the same meds/IVS & most pts were drugged up. One pt had a seizure during a class & another was stumbling around & didn’t know where her room was. Many of the patients were angry including us. Don’t go there. It is a detox center only in my opion. They diagnosed my daughter with rebound headache from Motin.
I am 63 and suffer from chronic migraine since age 7…moved to Maine where there are no headache specialists…unless someone can recommend one to me?? I currently travel to Boston to the John Graham Headache Clinic at Faulkner Hospital/Brigham Womans…Dr. Paul Mathew has been a life saver…highly recommend him if your in this area.
Thanks for the suggestion, Susan. You can check the three links at the top of http://www.thedailyheadache.com/resources to see if there are any headache specialists closer to you. Boston does have some great ones, I’m glad you’ve found someone who can help, but I know the traveling can be difficult.
Take care,
Kerrie
My first migraine occurred when I was 29, and it was severe. I had never even had an ordinary tension headache, so this was like being hit by a Mack truck. I continued to have these headaches for about for about 33 years, with sometimes only 5 to 10 good days a month. There was never a mild or moderate one, and they always ran their course in three full days. I saw specialists in Ohio, Penn., and Maryland, with no improvement, until a friend helped me with a diet eliminating MSG, nitrite/nitrate, and tyramine–she was the head of the Nutrition Clinic at Hopkins Hospital. That helped a lot, however MSG is hidden in many foods under names you’d never suspect, such as “natural favors.” No longer just a flavor enhancer, it is used in trace amounts to make actual imitation favors, such as beef and chicken. So if you are sensitive enough, you are out of luck. The diet restrictions are the same ones given for someone taking MAO inhibitor, although there is otherwise no connection. I just checked a web site for that list, and it is not complete as the one I was given. Mine included white corn and avocados, and more. Around the year 2000, there was a study about the use of lisinopril as a treatment to prevent migraine. They tried low doses–only about 10mg–and found very little benefit to migraineurs. I had been taking lisinopril for many years, with periodic rises in dosage, for high blood pressure. When my dosage reached 60mg, my migraines nearly vanished. The only things I have to avoid are almond extract, hot pepper sauce (Tabasco), and meats such as bacon, which not being ground, may contain concentrations of nitrite. Deli meats, being ground, seem okay. Now that the use of fMRI has found the part of the brain where migraines develop, we can actually watch the process happen! That part of the brain seems to over-react to every migraine trigger. Functional MRI is a godsend, and no longer can a doctor tell us that it is sure to be stress as the inevitable cause when they’re clueless about a cause. My only extreme stress occurred through a separation-divorce period when there was no perceptible change in headaches.
Now that I am almost headache-free, my present dilemma is that I need an NSAID for inflammation pain and can’t take any of them without spiking blood pressure. Ibuprofen (Advil), otherwise an ideal choice, makes me super sensitive to every migraine trigger for 3-4 days. And I thought those days were over! (This has been authenticated by experts, but it is probably a rare side effect.) The analgesic effect of ibuprofen lasts a very few hours, but it remains in one’s body for at least three days. All this has taken many years to discover and learn–my migraine history spans 52 years. I’m 81. I’m convinced that we all have to do our own detective work to conquer migraines. A newsletter subscription from The Headache Institute (Chicago) has been of great benefit. Hope I’ve given you some help.
Thanks for sharing your story, Sophia. I’m glad you’ve found so much relief. I totally agree that we all have to do our own detective work. If all NSAIDs are out, you might want to consider a “natural” anti-inflammatory, like turmeric, ginger or boswellia. Not sure if they’ll have the same blood pressure and migraine problem, but they could be worth a look.
Take care,
Kerrie
If you have any issues regarding headaches minor or small, I urge you to go see Dr. Nissan. He will take the time to determine what the issue is and if not find any means to help. He takes his time with you and he follows through.You never feel like a patient. He spends as much time with you until you feel comfortable.
After dealing with my neurologist for a few a while and getting nowhere, I made an appointment with Dr. Nissan at the Baylor Headache Clinic in Dallas. I couldn’t be more pleased. He’s from the Diamond Headache Clinic in Chicago, people above have mentioned issues with Diamond, but I found Nissan to be highly knowledgeable in the field, his prescriptions are older and off label, but their purpose makes so much more sense, and he was much, much cheaper than my neurologist. I can definitely see a huge difference in how my headaches are responding to the new medications.
BTW – I meant fix the problem…and find a solution.
I’m also originally from the Tacoma, WA area and have been in Texas only 4 years now.
I just saw Dr. Casaly today at Headache Center of North Texas. I’m not sure what to think of him yet but so far its bad.
First he was taken back as to why I have 3 Dr.s treating me for migraines. Well one i’ve had them since I was 14 and I have found a pain doctor, and 2 PCP providers. One of the PCP providers I have seen for 4 years; the other PCP was reccomended by his ability to help with Migraines.
Dr. Casaly I believes thinks that chloropromazine is going to help? Its an anti-pyscotic drug! What happens when I miss a dose? Do I get angry? Sad?
Sorry I have a 19 month old daughter and can not be on a drug with many serious side effects.
What did Dr. Casaly not understand that IBP, Naproxen, Tylenol and Aleve all upset my stomach?
So he puts me on something stronger than Naproxen??? Really…. Any help for a really good Nuero is appreciated. I want to fix the solution not become a crazy patient in a paded room.
I’m not sure where you’re located, but Dr. John Claude Krusz in Dallas is highly recommended (http://migraine.com/physician-experts/dr-jean-claude-krusz/practice-location-jck/).
Kerrie
I live in Chicago and disagree with that reccomendation for Dr. Robbins. I recently ignored a bad review for the guy and went to see him– totally regretted it. This guy takes ages and keeps pushing botox on me, every single visit! No botulism for me thank you!
My daughter has suffered with daily headache since October of 2007. She is currently being treated by Dr. Verne Caviness, neurologist at MassGeneral. He has helped her greatly, first by addressing her insomnia and then her severe migraines. His treatment has brought her daily pain down from a 7/8 to a 3/4 which can be managed with non-opiod pain meds. She has also been helped by daily meditation and hypnosis, which is giving her some pain free hours during the day. Other alternative treatments were tried and unhelpful.
To Aaron, I concur that Dr. John Claude Krusz in Dallas is wonderful. His specialty is IV therapy for refractory headache at his Anodyne Headache and Pain Center. He does not take insurance, but you may be able to be reimbursed. We flew down from Boston to see him and it was worth the effort. He is kind and patient and his staff are great
I’m with all of you. I’ve been to half a dozen pros: neurologist, Dr. Casaly, GP, psychiatrist and 2 pain management docs, without much luck or help other than the opioids. I’ve tried every med for migraines out there, and the narcotics are the only thing that helps (although they do contribute to rebound headaches if not taken regularly). Now, the drugs are starting to work less and less well as I seem to have built a tolerance to them. I am getting pretty depressed at the lack of sympathy for my situation, and still have yet to receive a sturdy diagnosis. I guess the medical profession makes more $$$ by masking my headaches rather than curing them. I don’t want to generalize the health profession, but I am at my wit’s end and need some relief. Any good headache doctors in the North Dallas area?
In Seattle – for general neurology I see Dr. William Likosky at Swedish. For headaches I see Dr. Natalia Murinova (she’s a partner with Dr. Lucas) at the UW medical center. These two are great and would reccomend fully.
Neuro
What do I think of my doctor? Which one? I’ve had a headache since I was 16 and I’m now almost 55. I’ve been to the Cleveland Clinic, the Mayo Clinic, Michigan Head Pain and Neurological Institute, Diamond Headache in Chicago, countless neurologists, chiropractors – In fact – I have lost track of where and to whom I have gone. All I do know is that every day I wake up, if I indeed have slept, and I have a headache and it is never below a 6 on a scale of 1 – 10. Most recently I spent 12 days at Diamond so that I stopped using opiates. Well, 12 very painful days later and $45,000 poorer, I discovered nothing helps me at all except the opioids.
Now I must tell you that I was having some really weird side effects from the opiates I was on and I just needed to adjust the kinds and dosages. I’m in transition, but hope things will turn around soon.
At this point, I have to put in a good word for my current doctor, Dr. Robbins of the Robbins Headache Clinic in Northbrook, Illinois. He listens. He doesn’t treat you like a hypochondriac. He is a published researcher. ( check out his website (www.headacedrugs.com) AND he treats you like you are a bright individual who knows something about your disease. Good luck and I hope some day you are pain free!!.
Another Seattle-ite here. I used to get several bad migraines a month, mostly responsive to triptans, but since moving to Seattle last fall they have become recalcitrant daily pounders.
I DID NOT like Dr. Aurora (I LOVED her peer, Dr. Robinson, who did more for me in one visit than Aurora did in four; I was so sorry to see her move away. Sigh.)
In addition to concurring with the negative impressions posted already, I’d like to add that Dr. Aurora does not know or care to warn you about how much MORE the treatments she offers will cost ($8,011.00 for ONE Botox treatment!! For the breakdown, see: http://www.healthcentral.com/migraine/c/58479/36630/botox-treatment).
I gave her 4 chances, now I’m trying Dr. Elliot (whom I am still waiting to see 🙁
I started having chronic daily headaches about 2 and a half years ago. About a year ago I heard of Diamond Headache in Chicago and I lived there so I checked it out. Maybe it was the doctor I have been seeing – but I have had a terrible experience there. I saw Dr. Nissan, he was nice enough and smart enough but I felt like he wanted to give me meds and get me out. I know a few people who have gone there with migraine problems and been helped alot. I think that is what the specialize in, and don’t focus too much on other kinds of headaches. They put me on a medication (a tricyclic antidepressant) and when I expressed my concerns about being on something like that and that I wanted to know more about it, he said “Just take it.” So, I went home and did research and since it was an older drug, I didn’t find much. Desperate for something to help, I took it. It did nothing over the following months and he just added to the dosage every time until finally I felt a little better. The downside is that about 2 weeks after that I started having severe depression (I didn’t get out of bed for days), panic attacks, and suicidal thoughts. He thought nothing of it and referred me to a shrink. I was hours from checking myself into a mental hospital when I found a website saying that the drug could cause the very things I was experiencing when given to people prone to anxiety. He KNEW that I was prone to anxiety. Well, I was not comfortable going back there. I recently started going to Wheaton Franciscan Headache Clinic in Franklin, WI – outside Milwaukee. There I saw Dr. Purath who was, hands down, the best doctor I have ever seen. She really understood everything I was saying and addressed all my concerns about medication and everything else. She also informed me that these kinds of headache GO AWAY!! Something that Diamond Headache failed to mention. She was also shocked that I hadn’t been on a certain medication already which she said is the best known drug for helping my kind of heacache. Again, something Dr. Nissan never mentioned. My first appointment there consisted of meeting Dr. Purath – the neurologist, a psychologist, a dietican, and a physical therapist. They feel like those people can help supplement the care given by the doctor. I think that is really great…they try to not turn to meds right away. Well turns out I have some alignment issues and have been working with a physical therapist – something that was never offered to me at Diamond. You also meet with a Nurse every couple weeks to go over what is going on with you in addition to being able to call and talk to someone anytime of day and NOT be charged money or have to wait for hours and hours. I had an issue with my medication a few days ago and I called and everyone was at lunch but I got a call just a few minutes later from someone who had my chart in hand and knew exactly how to help me. I am SO much happier with this new clinic and I would recommend it to anyone.
More on Seattle:
I treated migraines for about 6 years in Seattle and tried all sort of treatments. The thing that was most effective for me was orthogonal chiropractic treatment with Dr. Dan Lewis in Fremont. http://drdanlewis.com/index.html Adjustments plus food desensitization treatments reduced my migraines from daily to five days a month.
Now that I am living overseas they are slowly creeping back up in count, and eventually I will fly back to Seattle for a couple weeks of treatment to knock them back down again.
We lovingly call Dr. Lewis “Dr. Woo Woo” because he does a lot of alternative treatments, but hey, if it works, it works.
There aren’t a lot of options in the Seattle area as far as headache specialists go, so Dr. Aurora and Co. and the Swedish Pain Clinic is a major provider.
I saw a doctor at the headache center at Swedish for several years — a partner of Dr. Aurora’s who’s no longer with the practice because she moved for family reasons. They are very medicine-oriented at the Pain Clinic and aren’t much interested in finding non-medicinal means of managing the headaches. That being said, they are willing to adjust your meds and try new ones until you get a good fit. They also offer botox treatments to the scalp and neck, which is sometimes effective.
The Pain Clinic at Swedish does offer a Wellness Program (not covered by insurance) run by a very good physical therapist who also offers a great guided relaxation CD that helped me a lot. This may not be offered to you until quite late in the treatment game, so ask about it up front.
Also, be aware that their reception/triage staffing is abysmal and you will have to call and call and call to get any help with RX refills and approvals. If all else fails, insist that someone put you you through to a live person as in my experience messages are rarely returned in a timely fashion.
Finally, watch out for over-prescription of narcotics/opiates at the clinic. They are a favorite at the clinic and can cause rebound headaches, as can over-use of triptans. My doctor at the clinic did not warn me about this until after I was already experiencing rebound. I would ask detailed questions about Fentora, if prescribed, as it has been known to cause death in non-terminal cancer patients, yet was prescribed to me by a pain clinic doctor without any warning about side effects. You can also enquire about Marinol — synthetic THC — which they will prescribe eventually and which has no rebound effect.
I also see Dr. R. Steven Singer at Neurolgical Associates right next door to Evergreen Hospital in Kirkland, WA. Been a patient of his for at least 8 years now.
I have had migraines since I was 6 years old. Many doctors tried many things. Dr. Singer is the first to really listen and willing to try different things. I also think he is pretty funny. For the first time I feel like I am in control of my migraines instead of them in control of me.
I don’t know what his wait is though – probably just as bad…
Good luck!
Sara – Unfortunately, a 5 month wait is not unusual for a first appointment with a headache specialist. Don’t blame yourself, how were you to know? I managed to get a first appointment at Jefferson Headache Center in Philly with “only” a four month wait. Then I came down with a high fever and had to miss the appointment! So they gave me their “next available” – another 6 months out!
Kerrie is on vacation for a few weeks; she may have more suggestions for you when she comes back. In the meantime I suggest you look at the recommended doctors list on My Migraine Connection. You could also go over to rhymeswithmigraine.blogspot.com where MJ, another migraine blogger from Seattle, might have some suggestions for you.
Good luck! Megan
Another Seattle-ite with chronic daily migraines…I’m in search of a neurologist and have found that there is a 5 month wait for the Swedish Headache Clinic. I’m feeling desperate – my own fault for starting this search at such a low point in my health, I guess. I’ve tried and failed tons of meds and alternative therapies…anyone got any recommendations for a doc willing to work with a difficult case?
For those looking to Swedish Pain and Headache clinic in Seattle,Please check health grades for the clinic/doctors, although the main hospital gets decent ratings, the pain clinic does not and rightly so. I’ve been a patient there for both headaches and post surgical pain management. After working with them voluntarily initially I left due to cookie cutter medicine and a doctor who was patronizing, arrogant and fairly uncaring, I would not use them if I had a choice. Unfortunately this past year I had knee surgery and my surgeon is a part of Swedish in Seattle so again Swedish Pain clinic was treating me. My doctor was Dr. Joel Konokow and he is a horrible doctor, has earned himself a 2 star rating and comments about his lack of compassion, doesn’t bother to listen or explain anything to his patients, he has actually gotten angry when I needed clarification on something and berated me. I discussed his behavior with the clinic manager, who apparently didn’t particularly see a problem with it and instead I found myself cut off cold turkey and no way to defend myself or get anyone to care or even listen. This place is poorly managed and most of the doctors are 3☆s or below, avoid the heartache I suffer from and choose another clinic.
Interesting observation about the number from Seattle reporting…I live in Tacoma which is just south of Seattle. I grew up in Idaho and had a few headaches here and there but nothing chronic. After I moved to Washington in 1984 the headaches worsened and became chronic. I have daily headaches and have tried and failed the usual arsenal. I am at my wits’ end. I wake up with headaches every day. It takes all day to get rid of the headache. By bedtime I usually am headache free but exhausted, and then the cycle starts again. I have noticed when I travel away from the area my headaches are sometimes (but not always) better.
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I’m sorry to hear your headaches are so bad.
It is really hard to separate the headaches from the location. I was in Phoenix (where I grew up) recently and my head was great. I came home ready to move back to Phoenix… Then I realized that it’s a matter of being away from home. I love Seattle, but I have regular life stuff to worry about here. Like feeding myself and weeding! Still, I sometimes wonder if the Seattle weather is a bigger contributor than I realize.
I hope you find a treatment that works for you. A friend sees an osteopathic neurologist in Tacoma that she really likes. I cam give you the name if you’d like.
Take care,
Kerrie
I too have had migraines since moving to Seattle apx 8 yrs ago, althought I have had frequent HAs since I was a child. Coincidence…hmmmm???
I am looking to switch Drs. I’ve been going to Gary Stobbe for a few yrs but have become dissatisified with them due to them not returning my calls. I am booking an appt with the UW HA clinic. Any tried them before???
I have been going to Headache Center of North Texas in Lewisville, TX. I have seen Dr. Joseph Casaly here only once on my first visit. I believe he has too many patients because I have only had follow-up visits with the PA. It is hard to schedule appointments with Dr. Casaly himself. I have chronic migraines which have only gotten worse since I began going to this clinic. I am not sure what the overlying factor is, but I would prefer to see the headache specialist and not a PA.
My experience with doctors has been lack luster at best. No names for the negative, but the two neurologists I saw in Santa Fe, New Mexico (Dr. We and Dr. Wa) were both off. Dr. We had a fairly close diagnosis of chronic basilar migraines. However he stopped all treatment after an infusion of compazine and DHE 45 had my back break out in bleeding sores and my liver enzymes sky rocket to 500% above normal. Dr. Wa told me that my problems were not migraines and that I was imagining the whole ideal.
In January I went to see a vertigo neurologist at the Cleveland Clinic. Dr. Neil Cherian was wonderful. He actually LISTENED to the patient (what a novel concept), was not interested in test results for the first 1/2 of the interview but rather my symptoms, put me through a complete hands-on exam, and did not not pass judgment. He correctly diagnosed my problem(s) and treatment started immediately. The entire Headache clinic at Cleveland was impressive. I was doing better with hours where I quite literally was in a wheelchair for months prior to this visit due to the extreme vertigo and other bizarre symptoms. If you are in the Ohio basin, consider the Cleveland Clinic.
Back in Northern New Mexico, I am not to upset at Dr.s Wa and We. My case is complex and difficult to untangle. But I will not be going back to them.
Of course, that leaves me with no doctor here in the Land of Enchantment….
Bobblehead
Kerrie, I find it interesting and more than a coincidence of the number of people in Seattle. I started getting migraines when I was 24–the same year I moved back to Seattle. Never had one before then.
It could be the rainy weather. I always get a migraine when the weather pressure changes and it rains.
I saw multiple neurologists in the Milwaukee area who all had good intentions, but would run through their list of ideas and tell me they had no others.
About two years ago I started going to the Diamond Headache Clinic in Chicago. While my doctor there has not yet found a cure for my chronic daily migraines, I feel that if anyone can, it will be him.
He is a former migraine/headache sufferer so he understands what we’re going through, and at the same time, he’s been professionally focused in this arena for years.
I was able to get my first appointment with him within a month, and have never had difficulties getting an appointment that fits my schedule. Each appointment is usually an hour. He never rushes. Plus, if I e-mail him, he usually responds that day.
I appreciate that as we try new medications, he doesn’t make me stay on them for long periods of time if they don’t seem to be helping. He recommends alternative treatments and his staff is able to make recommendations for practioners in my area (e.g. physical therapist, stress managment counselor, etc.).
My husband and I are hoping to start a family soon, and his consideration/recommendations of a treatment approach in this situation is invaluable.
My one “complaint” is that he is so intellegent and has so much knowledge that sometimes he talks over my head or gets too technical so that I have trouble understanding. If I ask follow-up questions though, he makes sure I can understand.
While I’ve been seeing him for two years, he hasn’t given up or run out of ideas to try. He tells me it’s just a matter of finding the right thing. He still hasn’t let me give up hope yet.
Who is your dr at diamond? I’m looking for a new one since mine at the Cleveland clinic left? Thanks!
Amy, my Dr also just left the Cleveland Clinic in August. Was it Stewart Tepper or is wife? I saw Dr. Stewart Tepper and really liked him. But I never received the letter that he was leaving, so I just found out about it a few weeks ago. Now I have no idea who is good at the clinic or who to see. Do.you know of anyone good? Thanks!
Can I ask what his name is? Are you still happy? Feel over medicated?
Wow, thanks for the thoughtful and detailed responses. I appreciate your input — and am intrigued by how many of you are in Seattle.
Kerrie
I have been going to the Diamond Headache Clinic for years, and could not be happier with it. I fly to Chicago specifically to see my doctor, and we keep in touch via email and telephone. I have tried several others, but no one else has treated me as well or understood the complexities of my case. My doctor always makes time for me, even when she is overbooked (and somehow the wait is never that long). They do prefer medication and non-invasive procedures (botox, nerve blocks) over surgical treatments, but when I asked why, my doctor explained that she doesn’t want to do anything that could cause permanent damage, especially since a lot of the procedures people are trying have limited long-term research. Sometimes I think my doctor is more overprotective than my parents are, but it’s because she truly cares about me.
Who is your dr at the diamond headache clinic? I’m looking for one there since mine left at the Cleveland clinic. Thanks!
Just a quick reply to Christine – Thanks so much for the recommendation. I shall definitely follow it up.
I am a former patient of one doctor mentioned here, Dr. Sheena Aurora. My mom was also a patient. At one point we were all happy with her–I thought I was on my way to treatment with a prescription to try Topamax (at the time, it was the new preventative for us migraineurs). My mom was happy to find someone who understood the disease she was fighting (sarcoidosis–causes lesions in the brain and headaches, dare I say, worse than a migraine?). At the time I was happy because she was willing to try new drugs with me, seemed to understand the pain was real. She also set up a treatment plan for my mom that helped her pain instantly. Just knowing someone was looking out for my mom gave me some relief. Whenever I had complications with the office staff, which was on frequent, if not regular, basis, I let that slide because afterall, Dr. Aurora was the best. I thought it was worth putting up with the bumps along the way. But then things changed. The Topamax wasn’t working, so she increased the dose. Still wasn’t working. Rather than trying another approach, she didn’t suggest that and instead kept me on the Topamax. I was having migraines 4-6 times a week. Then it became increasingly harder to get an appointment to see her. But you couldn’t get refills on any meds without an appointment. You’d have to book sometimes as far as 2 months out, so you had to really juggle your meds, calendar and make sure you call to make that appointment. That is, if you could get through. Most of the calls went to voicemail and were never returned.
The final straw was when my mom was having an attack and in pain. During an attack part of her treatment plan was she was told to call Dr. Aurora’s office and come in for an infusion, IV and some other meds. Between two days we must have left over 20 messages. We never got a call back. When we finally did get through (I think on the 4th day?) we were told that the person that returned those calls (name omitted) was “extremely busy and doesn’t check voicemail”. This was a life or death situation for us, no exaggeration. This wasn’t “just a headache”. This was a very risky situation. Not long after that my mom was diagnosed with a rare form of cancer, so from then on her medical handlings moved on to oncologists.
I couldn’t accept the treatment my mom received and asked her oncologist for a referral. I switched, he took me off the Topamax, had me try Nadolol and assuring me that if it didn’t work, we’d move on to another form of treatment. My 4-6 headaches/week are now down to 1-2/month at the most.
I wasn’t posting any of that to bash a certain doctor or how they do things. I do think Dr. Aurora is good at what she does, and is an amazing researcher. As far as office management goes, that is when I couldn’t handle being treated that way, should I say mis-treated?
My point to all of this is if you are with someone and still struggling, fight for yourself. Find someone new. Change and see someone else. Don’t worry about hurt feelings or maybe it’s you not trying hard enough. You are worth the treatment and the relief.
Miss Vertigo–DO go to the City of London Migraine Clinic. I think you will have a much more positive experience there. Dr. Anne MacGregor is much more willing to work with you, and is not the sort to be so paternalistic and patronising.
Best of luck with your headaches.
My neurologist is Dr. R. Steven Singer of the Neurological Associates of Washington in Kirkland, WA. I also see a Naturopathic doctor at the Tahoma Clinic in Renton, WA. I saw Dr. Singer exclusively for a couple years with some success, but still had an unaccaptable number of headaches per month. What I like about him is his willingness to listen and his openess to ideas beyond drugs. He put me on magnesium and B2 and COQ10 and got me off caffeine and Excedrin and other OTC drugs. He sent me to a physical therapist for my neck pain. He didn’t yell at me when I tried acupuncture. After awhile he put me on a beta blocker and then topamax, neither of which worked. I become sensitive to triptan drugs if I take too many (like 4 a week). In desperation I went to Dr. Ellis at the Tahoma Clinic. She tested me for food allergies and mineral deficiencies as well as tested my hormone levels. After finding out I was gluten intolerant and had many food sensitivities and that my adrenal hormones were low, I presented the findings to Dr. Singer and at first he was defensive, then after doing some research on it, started to look for gluten intolerance in other patients of his. Now I see both doctors and avoid the foods I am sensitive to and while I am not headache-free, I am much better with fewer drugs. I try to do what Dr. Singer calls the simple things like getting 7-8 hours of sleep each night and not oversleeping, moderate exercise daily, not getting dehydrated, eating every 4 hours, etc. The sleep seems to be really important. When it is interrupted, I get a headache.
I have been going to the headache clinic at Dartmouth Mary-Hitchcock Medical Center in Lebanon, New Hampshire. Dr. Ward is a better talker than listener and he lacks curiosity. Dr. Levin is a fun, curious kind of doc who actually waits to hear the answers to the questions he asks. The waiting list to get appointments is six months, totally not worth it if the appointment is with Dr. Ward.
Neither doc has anything to help me with my headaches, though.
Hi Kerrie,
As you already know, we have both been treated by the same doctors at Mayo Clinic Arizona. My opinion on the care I receive there still remains the same…never before have I been treated with as much compassion, respect, and dedication. My voice is always heard, I am never made to feel rushed, and my questions are always answered, even if the answer is “I don’t know, but we are not going to give up.” That last part being the most important.
I feel as if they really care about my well-being, physically and emotionally, and that my pain is actually understood. Even during my worst moments, I could find some comfort in knowing that I have a great team behind me. I may not be cured of migrianes (yet) but I still have hope.
If anyone out there is considering Mayo Clinic, I highly recommend that you do. Maybe travel or cost is the issue, but if you can, it’s worth it. I can not express how important it is to actually have confidence and trust in your doctor. Eventually, I just know it, things will get better. I never knew this before. It takes a good doctor to keep a migraineur this hopeful!
My neuro is Dr Daniel Fosmire, at Overlake Neurology in Bellevue. He’s a great doctor. He’s always very willing to listen to my concerns and answer any questions I have. I call into his office sometimes as frequently as 1-2 times per week, and I always get a call back within a few hours. I’ve been seeing him since last February.
I’ve also recently started seeing Dr Sheena Aurora, a headache specialist at Swedish Headache Center in Seattle. So far I like her a lot. I’ve only had one office visit with her, but she’s given me some hope and a new treatment plan.
Also, there’s a list of patient-recommended headache specialists on mymigraineconnection.com: http://www.healthcentral.com/migraine/headache-specialists.html
I just started seeing Dr. John Claude Krusz in Dallas, and so far, so good. He’s by far the best and most informed, innovative, and compassionate specialist I have seen. It was well worth it to fly down there for a few days, and if you are interested in visiting his clinic I’d be more than happy to visit with you about it by e-mail or phone.
Swedish Pain & Headache Center, Seattle
Dr. Elena Robinson (just moved to) Vancouver, WA
My experience may be different, as I’m in the UK.
The only specialist I’ve ever managed to see, due to our stoooopid referral system on the NHS here was a consultant neurologist at Charing Cross Hospital, London, whose name I cannot recall right now. Which is just as well because he was the most patronising and pompous ar$e I’ve ever had the misfortune to be sitting in front of. The consultation ended with the words “I’m sure there’s some help for you out there, dear, but it may be better coming from the Royal College of Psychiatrists than the Royal College of Physicians” and a prescription for Amitryptiline, an antidepressant, when I’d already expressed my VERY strong wish not to be put on any kind of psychotropic medication after a bad spell of diazepam dependence and subsequent withdrawal five years ago, which he mocked, and ignored. I left the clinic in tears, completely crushed after hoping that I would finally get some help after fifteen years of illness from migraine, and never went back for my follow-up appointment. Neither did I cash in the prescription – I know my body, and I know the effects that psychotropic medication has on it.
However, there is apparently a private migraine clinic in London, called the City of London Migraine Clinic. I think fees are discretionary, but around the £50 mark for a consultation. Kerrie, I’m not sure if you allow direct links here, but they are easily found via a link on the Migraine Association website here in the UK. I’m considering giving them a try, so if anyone reading this has had any experience with them, good or bad, I’d be very interested to hear about it.
As ever, Kerrie, thanks for providing this wonderful arena for people to share and discuss their experiences in treating this delibitating condition.
I have been to about 8 different neurologists. Each one gets to a point when they run out of ideas or begin to give up. Some have been good, others have not,for various reasons. I am now using my primary care physician because he has a special interest in working with headache patients and he is great. He doesn’t give up and the bonus is that he sees me on a regular basis (every 3 mos) and I can call anytime with problems. I like feeling that I am not a bother. It’s hard b/c after 20 years I’ve tried practically everything and nothing has really worked. The last neurologist I saw was “highly recommended”, a well known name, but he had no remedy to try to fix my frequent 5 day migraines. It wasn’t worth the two hour drive there and the two hour drive home to be told “your body just wants to have a 5 day migraine”. I ditched him. I’ve learned that neurologists have a few meds they are comfortable working with. If you don’t respond to those, then they get uncomfortable and you become their problem.
I have seen multiple headache specialists but I am currently seeing Dr. Joseph Casaly in Dallas, TX. I like him and he seems to have a very good understanding of headaches. Nothing we have tried has worked yet, but I do not blame that on him at all. The only negative is that he is so busy it takes months to get in. After you become an established patient you have all future rechecks with his PA (which I do not like).
I attend Derriford hospital in Plymouth (UK). I see a specialist called Doctor Stuart Weatherby.
Apart from waiting times to see this specialist the treatment i have been given has been productive. At the start of my headaches I was convinced that this man and the hospital were doing nothing but, and this may help others, over the three years i have had my daily migraine/headaches slowly they have been reduced. Patience seems to be a key, as i have tried 10-20 different meds before i have found any that help.
Recently i have been put on PREGABILIN and touch wood, although i am not headache free, the frequency of my migraines have been reduced to about 2 a month and the intensity of my daily headache is now a 3 out of 10 instead of a 6/7. Also i have been having trigger point dry needling (in neck and left shoulder) which has also been extremely helpful.
My full story is at http://www.dailyheadache.co.uk although it is nowhere near as up to date as this site.
I would also like to thank kerry as it was an article on this site about pregabilin that made me ask my specialist to try it. Thank you kerry. This site has been an amazing source of strength and knowledge for me and im sure others
Hope this helps
James
My daughter was treated at Diamond Headache Clinic in Chicago. Some biofeedback which was good but mainly just a medication center. No meds helped. She went through a 2 week painful detox when it was all over with.
I agree, my husband also went there. I feel like they treat everyone the same….give the same medications. It really was a depressing place and no help at all.