Welcome to the Migraine headaches doctors Forum
Welcome to the Migraine headaches doctors Forum
I am having no luck finding a doctor in my area…..and when I do the information that the do divulge seems unrealistic and the information that they don’t divulge has been detrimental to my health also…..Where to turn? I am at my wits end and ready to give up the fight!
I always find urgent care clinics a good option for migraine attacks. The treatment is quick plus minimal wait time. I live in Waco..Texan Urgent Care really is my choice for my migraine specialist.
KelcieLe, you have so many headache specialists fairly close to you. Plenty in Dallas and Houston. I would check one out so that maybe you can get the right remedy to where you don’t even have to go to urgent care. Also read here about migraine prevention and then you decrease your anticipation of having an attack.
By Teri Robert
Unfortunately, there aren’t enough Migraine specialists. Many of us have to travel to get to one. I spent four years traveling eight hours each direction three or four times a year to see my specialist, but it was worth it. Have you see the listing of patient recommended specialists at http://www.helpforheadaches.com/doctors/migraine-headache-specialists.htm?
I wanted to share my experience with Mayo Clinic in Jacksonville.. to save anyone from experiencing what I went through. I have had Migraines for 15 years and over the last 2 years they have really evolved in to chronic Migraines. I have seen quiet a few Dr’s, Neurologist and a Chiropractor. I have also been to the USF/TGH Headache clinic.. I have been extremely depressed and feeling at a loss because of the pain and not being able to find a Dr who cared enough to help me. I was advised in the ER a month ago to try and get in with Mayo Clinic, “they were the best”. So I made an appointment, was extremely excited and truely felt like this would be my answer.
My appointment was last Thursday in Jacksonville, a 3 hour trip from where I live but I fetl it would be worth it. I met the Dr, he reviewed all my records, did the standard Neurological test and looked at me and said.. well unfourtanately you have tried all the best medicines and had pretty much all the standard test, so I dont have much hope in helping you. He informed me that there was a small % of Migraine suffers that never got relief and he felt that is where I fell. He did prescribe a few test, that of course came back normal and a new prevenative. He refused to discuss my pain or the fact that I am about to loose my job due to not being able to get a Dr to help me certify for FMLA.. I started crying half way through my visit and couldn’t stop. My worst nightmare had come true, another Dr saying, I am sorry, I can’t help you!
The Dr was even so nice to make the smart comment as I was leaving.. If you happen to find a cure for Migraines before I do, give me a call!
Needless to say I am completely devistated and at a loss of what to do from here. I have even called a few Neurologist in near by towns, explained that I had been to Mayo’s and to TGH, one lady just told me this morning.. well if you have been to those two places and wasn’t helped, I don’t think there is much we can do for you!
That’s a sin! He wouldn’t even try to help you? I wish I could give you my HA Doc (in Philly). He truly IS the best in my opinion!
I would have cried as well! I wish I had something to offer…maybe someone here will!
Best to you!
Thanks Dawn RN.. It was a rough experience but I have to hold on to hope that I will find a Dr that will try and help me..
Hi, I too am having a hard time finding a decent doctor to treat these migraines, I live in new york, and it takes so long for me to get to see a neurologist, i had a problem with the train yesterday and i missed my appointment, so now what do i do? It”ll take another 2 or 3 months for me to get another appointment, is there an easier way?
sorry to hear you are sharing in this experience. Finding a good Dr (Headache Specialist) is almost as bad as the migraines themselves. They would be so much easier to deal with if you knew you had someone that was there to treat you and actualy cared whether you were getting any relief or not… I am not aware of any easier way but to call, make another appointment and wait. I can’t even get Dr’s offices to call me back!
I had such an awful time dealing with my new neurologist that I decided I should warn people about him. I am in Greeley, Colorado and saw Dr. Celina Tolge for 5 years and she was one of the best doctors I’ve ever had. She had to close her practice at the end of the year and sent her records to Dr. David Ewing.
I went to see him right before I had cervical fusion surgery and since then have become so frustrated that I finally fired him yesterday. My first appointment was made for 7 a.m. and I got to the appointment about 10 minutes early. The doctor didn’t even show up to open the doors until about 7:25 and then he brought me in and only saw me for about 10 minutes. He didn’t seem interested in seeing me at all. Since there was nothing he could do until after I had healed from my surgery, we decided to meet again three months later. Well, it just happened that I was sick with the flu that week. I called and rescheduled, but they said they still had to order the Botox for my appointment and that would take two weeks to get in. So I made my appointment for two weeks out and waited.
In the meantime, the doctor had called in a prescription for my pain meds that was only 1/3 of what I had been taking previously. He never mentioned he was lowering it to me, he just did it. The first month, he had admitted it was a mistake and that he hadn’t read the Rx strength the first time through. He called in a new Rx and even though it was for a lot fewer pills than I had with my old doctor, I made it through the month. I have been trying to reduce the number of pills I take gradually, but since I was just out of surgery, I was having more pain than usual. When I called the pharmacy for another refill after the month was up, they again sent in the wrong strength and amount, so I called his office.
I have to say that I have never been treated so rudely by someone in a doctor’s office before. I asked the nurse about fixing the Rx again and she told me the doctor was out of town, and wouldn’t be back until the day before my appointment the next week. I asked if I could leave a message for him, and she said no, with no explanation. When I asked why, she just said, you have to wait until you see him to talk to him. I was a bit dumbfounded at this and explained that this was the same problem that happened last month and she got angry at me. After a couple of minutes of trying to figure out just what was wrong, I finally realized that she was calling me a drug addict. She ended up just hanging up on me and I called her back.
I really couldn’t believe that after 5 years of seeing specialist after specialist and in-patient hospital treatment for my migraines that I was having to deal with this. I thought I finally had the history that somebody would be able to read through and see that I have tried almost everything that I could try. The only thing I really haven’t tried was Botox and they were working on getting the approval for that.
Needless to say, I got very upset. By the end of the call I was crying and couldn’t believe some of the things she had said to me. I finally told her that if they were going to treat me this badly, I wasn’t coming back at all and she hung up on me again. I found out later that the doctor had been in the office the whole time and that she had lied to the Doctor and told him that I had refused to take numerous earlier appointments and had rescheduled two weeks out for no reason.
I called and left a long message on their voice mail (they were suddenly gone from the office in the middle of the afternoon) about the situation and about the woman lying to me and the doctor. I’ve never wanted to reach through the phone and shake somebody quite so much, but I was professional about it (although I was crying through most of it). I told them that I hoped they were ashamed at how they treated a patient in pain and in need of help.
I’m thinking of making an appointment with my old doctor who has moved to a different state and is now over an hour away. It would be worth the drive just to keep from dealing with people like this.
I’m sorry you had such a bad experience. If I were you I would definitely not go back to see that doctor. There’s a good migraine/headache specialist in Denver named Dr. Judy Lane. She’s been treating my migraines for the past year and a half and I would definitely recommend her as a good doctor.
TO sdavis: I went to Mayo Clinic in Rochester, Minnesota (an 8 hour drive for me). I also had just about the EXACT same experience. I saw a neurologist there and he ran some tests, another MRI, and everything came back normal. When I finally saw him again after all the tests.. He told me I had Chronic Daily Migraines (I had already been diagnosed with that two years prior) and that I needed to “learn to live with it” I was 19 and had to withdrawl from college and could no longer keep my part time job due to my daily completely debilitating pain. I literally did not HAVE a life, so “the best place in the country” telling me to learn to live with this left me depressed and completely hope-less. I was in shock. How do you learn to live with not really living? After that, I, as well was turned away from several doctors saying that if Mayo and a headache clinic here in Chicago couldn’t help me that they couldn’t. I finally found a great neuro willing to work with me, but we haven’t found anything successful yet. I just found it interesting you had the same problem with Mayo Clinic. I was utterly disgusted by them, as I’m sure you were too. I wish you luck in finding some relief..
I thought Mayo clinic was supposed to be the top rated clinic in the US. I can’t believe they told you that. Have had chronic migraines for 13 years so i feel your frustration. I hope you have found your solution. Still working on mine.
By Kerrie Smyres Moderator
Not all Mayo Clinics are specialized in every area of medicine. The headache/migraine staff at Mayo Clinic Arizona is incredible, but I’ve heard complaints about the other clinics. It also depends a lot on whether a particular patient and doctor “click.”
I have had migraines for 13 years, of which I believe I have been rebounding (MOH) for 12 years. By rebounding I mean I averaged 15 migraine days per month for 12 years & a minimum of 15 to 25 Imitrex per month for 12 years. I am in the process of detoxing (DHE-45 & Toradal) from Imitrex for the 3rd time in the last 3 years (at my insistence & by my research as to how to detox). My neurologist never suggested that it might be MOH or that I should detox. When asked she said that it might be MOH or it might not be… So I told her that I believed it was MOH & I was going to detox!
My husband & I are retired & we just sold our house. We plan to move to Phoenix & I hope to get into to see a Headache Specialist at the Mayo Clinic. Can you (or anyone on this board) recommend a particular doctor at the Phoenix Mayo Clinic? I know how important it is to “click” with your doctor. Thank you in advance.
It’s always about the doctor, never the clinic. Do your research and please ask for the doctor you want, and wait if necessary to get him/her. Remember too that not every doctor and patient combo will work well. It’s exhausting, but when you can finally find the right doctor, it’s amazing how you can begin improving.
Hang in there, and good luck…
Has anyone been to or heard anything about the neurologists at the University of Virginia?
I have had the same neurologist since I’ve been diagnosed with migraine. In the beginning he was absolutely great, now he’s taken to flat out telling me – “I just don’t know how to help you,” and makes me feel like an idiot for complaining about my migraines. I live in Maryland and I have Kaiser however I am on disability so Medicare and whatnot will give me a chance to see other doctors, any suggestions?
I have suffered for years with “atypical migraines” and have gotten all sorts of answers, prescriptions and mostly dismissive attitudes from health care practitioners. I have become underemployed due to my disabling headaches. I can tell you the approx. date they began; before that I was healthy….I have begged for answers to the myriad of symptoms i have with the headaches…I found out recently that I have Lyme Disease and headaches and related “migraine” symptoms I have are due to a coinfection that often goes with Lyme. If any of you live in an area where you might have rec’d a tick bite please pursue testing for Lyme Disease. It is all over the United States and a very, very real thing. My headaches……the constant swelling feeling in my head, the nauseau, dizziness, ear pain, numb face and tongue and head fog are slowly easing up since starting the antibiotics. I pray my life is coming back and hope the best to all of my fellow headache sufferers.
If anyone is in the Chicago area I have a WONDERFUL headache specialist/pain specialist/neurologist. and I have been to wellllllll over 10 neuros alone!
@jadedldy– I felt you were telling my story. It’s nice to know others know what I’m going through but sad to know that many of us deal with such uncaring doctors.
My PCP retired and I had to find a new doctor. The one I ended up with was so young and she didn’t know anyting aobut headaches. She told me flat out that there is no such thing as “weather-related” headaches when I said I suffer from barometric pressure migraines. She referred me to a pain clinic that couldn’t get me in for an appointment for 8 months. By that time, I got into a different pain clinic that didn’t listen to me or my health history, and injected my skull with steroids.
I had enough and went to a different PCP who was more experienced. I also had an appointment with a good headache clinic. Ended up doing jury duty and had to change that appointment (and wait another 2 1/2 months).
When I went to this new PCP to get a RX for the pain, she condescendingly smiled at me and told me that she saw too many red flags (changing doctors) and cancelling my headache clinic appt (regardless of WHY! I would be in contempt of court if I didn’t show up for jury duty–she told me I was lying…) She said she wont perpetuate my drug habit! I had already explained all the meds I had tried that didn’t work, that I don’t want to be on narcotics, and I’m looking for other options. She wants me to go back to meds I have already tried that made me suicidal. THAT was her idea of helping. She said that was the best course of treatment for me, even if my drug-seeking self couldn’t see it right now. My husband, who was with me, just about jumped out of his chair. I was so upset that all I could do was sit there and cry. I asked her if she believed me and if we could work together as a team to find the right treatment. She flatly told me that it was my choice to stay or leave.
I honestly don’t know what to do. If I switch doctors again, those “red flags” will show up again, yet to stay with a doctor who obviously doesn’t believe in me is not very helpful either.
Any suggestions out there???
There are plenty of PCPs out there but few headache specialists. I recommend getting another PCP (reviews can be found online) and try to get a visit with a headache specialist for an overall evaluation. Where do you live Robyn?
I live in Houston, TX. After my Neuro could do nothing further for my near daily migraines, I went to a ‘Headache Specialist’ whose idea of treatment was to ask me, “What do you think we should try next?” So I fired him. My PCP then referred me to a WONDERFUL Neuro who is a Headache Specialist, Dr Pamela Blake. If you live anywhere close to Houston, I highly recommend that you see her. At my first appointment, she spent 1 1/2 hrs reviewing every test, treatment, preventative,etc that I’d ever tried. We discussed treatments together and came up with a treatment plan. I have been undergoing Botox and Nerve Block injections, which have really helped, and I also take Topamax. She only works with patients with headaches. I have been seeing her for 2 yrs and my 26 yr old daughter has also seen her for her migraines. She has truly been a Godsend. Dr. Blake has a large practice of faithful patients who refer her to other migraine/headache sufferers through various online migraine boards.
I’m so happy you have found a doctor and a management program that is working for you! For other members who are interested, here is the list of certified headache specialists http://www.migraineresearchfoundation.org/pdf/Final%20Diplomate%20List.pdf Be aware however, that any doctor can call him/herself a headache specialist. That doesn’t make them one. Not every doctor will be right for every patient, and vice versa. This is a great place to start though…
I went to a “headache/pain mgt dr” today. She told me that I should be happy the botox helped at all. It took my pain from an 10 to a 5 for 3 weeks. I should also be happy that my pain meds give me some relief and should take more of them. She said that given the chronic nature of my headaches it was unrealistic to expect not to be in pain. I fought back tears. I said thank you very much and crawled out. I have one specialist left I am trying to get in to. Are my expectations too high with these drs? I have had migraines since I was a kid, am 36 and have tried it all. Thanks for your input.
KYANGE – Hang in there. Can you get to see a headache specialist. The statement this physician has given you makes me suspicious that they are not board certified in headache medicine. A specialist is really the best kind of doctor for hard cases like ours.
Dr Whyte — I live in Minneapolis, MN. I’m not sure how to go about finding another PCP without having those red flags pop up rather than being seen as someone looking to work with the right kind of doctor. I did review the other two doctors I saw. There wasn’t much out there on either of them.
I am with a headache specialist right now…I just had one appointment so far for evaluation. He has me on Migranal NS which isn’t helping so far. I’ve ended up in the ER because of pain. He wants me to continue on the Migranal yet.
At this point, I’m just frustrated and unsure how to even find someone to work with that will listen and work with me.
thanks for any advice!!
I wanted to add a word of encouragement here. My GP send me to a neurologist a few years ago for my chronic migraines that I’ve had since childhood. He was supposed to be very good and highly recommended… all that. Over time he did start me on nerve block shots, but that was the only thing in 2-3 years that really helped. It seemed that I was doing all the research and coming up with the ideas. So on my annual physical with my GP, I mentioned it. She agreed that it was time for a new doc, and it so happened that she knew JUST who… and so I’m with a new neuro who specializes in migraines. She diagnosed dystonia (that God awful neck pain!) and we’ve got a good treatment plan going. It’s early days yet, but I feel like I’m in the hands of someone who know what to look for and how to help as much as possible.
I know there is no cure for us. I know there will still be days of pain. There are alot of drugs that just don’t work for me but do for others. That is how this disease seems to go. But feeling like my doctor cares and is trying to help means alot. Do not be afraid to seek a second opinion. I liked the last guy… he was nice and I’m sure he meant well, but I was still missing WAY too much work and he didn’t seem to be able to say much more than “we’re doing all we can” when really he wasn’t.
Hang in there and keep taking to people you know… networking helps!!
Bonjour j’ai 13 ans et j’ai des migraines depuis environ 5 ans,j’ai des migraines ophtalmique et je suis aller consulter un neurologue, je lui ai dit les symptômes et comment je voyait pendant la migraine et elle ma dit que c’était déjà une migraine d’adulte.
Je n’en peut plus es que vous savez quand es que sa va s’arrêter?
By Nancy Harris Bonk Moderator
I’ve translated your comment into English using Google translator and I hope I have most of it correct: “Hello I am 13 years old and I have migraine since about 5 years, I have migraines ophthalmic and I’m going to see a neurologist, I told him the symptoms and how I saw it for migraine and told me that c ‘was already an adult migraine.
I can no longer es es when you know its going to stop?
Thank you in advance”
No one knows if or when migraines will stop because migraine is thought to be a genetic neurological disease caused by overactive neurons in our brains and genetics. “Migraines ophthalmic” may be used as a descriptive term, because that is not an offical diagnosis. Not knowing exactly what type of migraine you have makes it difficult to get accurate information and treatment. There are many different types of migraine, you can read about here; https://migraine.com/faqs/what-are-the-different-types-of-migraine-aura/. Information about migraine in children and teens can be found in this link; https://migraine.com/migraines-in-children-and-teens/.
As far as a doctor goes, you may want to see a migraine specialist if you aren’t getting any help from a neurologist. A migraine specialist is a doctor who treats migraines and headache disorders all day, every day. Let me look around for a doctor in France who specializes in migraine. I’ll be back to let you know what I find out soon.
My Neurologist said there is nothing she can do for me anymore. How nice seeing i suffer on a daily basis and have tried just about everything. Now i need to find a good headache clinc. She mentioned one in connecticut or philly but that is all she gave me. I live in syracuse new york so i am looking for a good headache clinic as close as possible. I realize i will have to travel. Can anyone help
By Nancy Harris Bonk Moderator
Oh nana, how awful to hear that, I’m so very sorry. Maybe it’s just that this neurologist doesn’t have enough experience with complicated migraine cases to be of further assistance.
You can’t do much better than seeing the “true” migraine specialists at the Jefferson Headache Center in Philly. Yes, you will have to travel, but it will be well worth the trip. Then after a plan has been established, maybe you can work with your neurologist at home to continue with it. Here is information on where to find a migraine specialist; https://migraine.com/blog/looking-for-a-migraine-specialist/. A word of caution – choose the doctor at the clinic, not the clinic where there are “good” doctors. You want to see an expert Does that make any sense?
Does anyone have any suggestions on what to do with a 15 year old that has had a migraine for 2 months. She is unable to attend school or anything. We have been hospitalized, tried all kinds of medication combinations but nothing works. Does anyone have any suggestions. Her pain stays at a 6 to 7 all the time. HELP
By Nancy Harris Bonk Moderator
Your poor daughter! I know how I feel when my kids are in pain, it’s just awful. And being a teenage can make everything feel worse.
I would suggest taking her to see a “true” migraine specialist. Many neurologists may say they are ‘headache’ specialists, but that really isn’t true. This is because they treat so many other conditions like MS, Parkinson’s, stroke and epilepsy it is difficult for them to be experts in one area. What your daughter needs now is an expert, and that would be a true headache/migraine specialists who treats one conditions all day, every day – migraines and headache disorders. Unfortunately there are only 290 board certified migraine specialists in the U.S. so you may have to travel. Let me give you some information on where you can find a migraine specialist; https://migraine.com/blog/looking-for-a-migraine-specialist/
Let me know what you think, hang in there.
the only thing that cures my migraines is a shot of demoral or tegratol..
Raymondnoll – Demerol is a pain medicine that relieves the feeling of pain associated with your Migraine attacks, however, it does not abort the attack. It simply makes the attack more bearable until it resolves itself.
Are you seeing a Migraine and headache specialist? I ask because Demerol is certainly not considered a first line medicine for Migraine and indeed can cause some serious problems in Migraineurs including both medication overuse headache as well as the potential to contribute to the chronification of Migraine which is a serious complication.
Have you tried triptans, ergotamines or anything else other than Demerol? Do you take it orally or by injection, etc…?
I have been taking prescription meds for severe migraines daily for approximately three years. Yesterday we took a family vacation to Wisconsin Dells at the Kalahari Resort and there was an “exhibit” there called the vortex which consisted of a ten foot walk thru cylinder with a spinning tube with tiny specks of color, an occasional strobe light and hard core industrial music. The teenagers present were dizzy when they walked out of the “vortex tube”. I felt 5 years younger and a “release” of migraine potential as I walked out of the vortex tube. I told my husband I wanted to recreate this vortex tube in our home. Perhaps a doctor could PLEASE investigate the qualities the affect the brain in regard to migraine because I think there could be a correlation.
By Nancy Harris Bonk Moderator
How very interesting. Could you explain a little more about this “release” you felt? It sounds intriguing.
I need help,i have had migraines for quite a while now yet i have not been to see a dr because i cannot afford one. I cannot take these headaches anymore and ive tried everything to make them go away can anyone please tell me what i can take to help for now.
Hi hon, I am so sorry for your suffering. Migraine is just one of the worst things to have to deal with even when you can get the help you need.
Unfortunately, what you can take for your Migraines really should be decided by you and a doctor – we are not doctors here and can’t possibly know your medical history etc to help you that way.
However, there are several steps to better management that you might be able to take on your own and I’ll include a link below:
Migraine Management Essentials #1 (with links to the rest of the series) https://migraine.com/blog/migraine-management-essential-diagnosis-and-doctors/
Let me see if I can find some information I know is here on the site re: finding a doctor you can afford…
Ellen, I noticed you are helping out someone in need. I couldn’t help but notice Nancy had put a link for finding a specialist. While looking at it, I found this site. http://migraineresearchfoundation.org/resources-links.html
Another resource would be calling the local hospital to see if there are assistant programs available. The Social Workers at my hospital know of all the area programs for assisting those in need. I wish you the best in your fight for relief.
Every state and most cities have programs for those who need assistance. Free clinics and some with reduced fees or fees based on income are also available in most areas. Hospitals and public health departments will have the information for those local resources as well as those you mentioned.
Thank you for adding your two cents! I love that this community can come together so well to help each other!
What should I do if my neurologist doesn’t seem to actually listen to me? I’ve had migraines since I was about 14 and I was a victim of the precursers as a child (lots of vomitting and abdominal pain) (not at the same time)
And during my first year or so of college I went to a doctor for it. She was really great, she listened, had me make a headache journal, actually LOOKED at it and told me I was on the edge of just treating it the way I had been (icepacks and advil) or taking preventives. Then she moved medical offices.
So I am going to a neurologist and he seems nice, my mom’s a nurse aid and she says everyone loves him. But when i went to see him the first time. I told him about my headaches, he kept interrupting me. I made a huge list of all the attacks I had had in the last year and he didn’t even look at it when I offered. He just kind of stuck me on sumatriptan (which I will admit is a GODSEND!) and some preventive meds (which haven’t worked yet) and told me to see him again in a month and the month is almost up. If he keeps treating me like this, should I see a new doctor or just trust him?
Teania – I tell patients to follow their guts. Here are some tips for an effective office visit that will be helpful: 6 Tips for Optimal Results at Your Doctor’s Appointment https://migraine.com/blog/6-tips-for-optimal-results-at-your-doctors-appointment/
We have a couple of posts that will also be helpful to you too:
Is It Time for a New Migraine Doctor? https://migraine.com/blog/is-it-time-for-a-new-migraine-doctor/
And last but not least – this is a list of board certified headache and Migraine specialists you’ll want to check out. If your doctor isn’t listed here, chances are they have not received the additional training often necessary to appropriately diagnose and treat Migraineurs. It’s a great way to find someone who has received that training and get started with somebody really amazing at helping us: https://migraine.com/blog/looking-for-a-migraine-specialist/
While I am happy taht I found 4 doctors who actually are headache specialists in my area. Now I feel really worried cause my doctor ISN’T one of them. I wonder if I should ask to be sent to one of them.
This is probably a long shot but does anyone know a good specialist in Auckland, New Zealand… I have tried multiple Dr’s, Osteopaths. Cranial Osteos, Chinese medicine for my bi-weekly Aura migraines to no avail. Please help 🙂
By Susan L
I would add my 2 cents to this conversation and encourage anyone who isn’t happy with their doctor, neurologist or pain management specialist to keep trying another doctor until you feel comfortable and “know” that you are getting the best care you can receive. As mentioned before, there are programs for those in need. Reach out to Social Service organizations, local hospitals,and search online for support groups like this one. There are many health-related boards with caring members like these who are welcoming and warmly waiting to offer recommendations to all of us. But this one is fabulous for those of us with migraines.
Hi Zo0ey, have you tried acupuncture treatment for it. Acupuncture is a natural healing and it is the best treatment for headache and migraine. I also availed from it and now I am fine.
Teania – We always suggest seeing a headache and Migraine specialist because they are the best at diagnosing, treating and managing those of us with these problems. They have had soooooooo much extra training that other doctors don’t get. That said, if your treatment and management are satisfactory, then seeing a specialist may not add any additional help to you.
Curious question. Why do we here in Australia have no headache/migraine clinics except one I know of in South Australia (Watson’s headache clinic) but you guys in the USA seems to have them all over the country. There just doesn’t seem to be much help around for people like me who suffer chronic daily migraine. It is so frustrating. Surely other countries have just as many migraine/headache sufferer’s in need of help. I know this is probably a stupid question but it just keeps nagging me.
garfieldrules – I wish I could answer your question. As we are US based, we do have some listed in the specialists link I gave you, but I don’t know if those are all-inclusive re: out of the country. Some doctors simply choose not to be listed too.
I am trying to find anyone who has used Johns Hopkins Migraine Center. Would love to know your experiences as I am considering making an appointment.
Marge Kelly Moriarty – I’m glad you asked that question 🙂
It’s really wise not to choose a clinic, but to choose a specific doctor. Migraine and headache specialists are great at what they do, but all are not created equally.
Do you know which doctor you want to see there?
I live in the Indianapolis area; I was sent to Mayo Clinic Phoenix in AUGUST 2011. I was seen by a team–MD, psychologist, tested for sleep apnea, physical therapist. My MD was a “fellow”–in her last stage of training, she was excellent, knowledgeable, kind, caring–she prescribed a medication to abort the headaches; and the NSAID Cambia, I told her I was unable to take NSAIDs due to GI problems but she urged me to try. My worst experience was (believe it or not–the psychologist–he and I just did not ‘click’–I got the distinct feeling that he disliked me the minute I sat down and it continued the entire, very unfortunate. I never met another person anywhere that was the least bit unkind. When I returned home, the medication to stop the headaches did NOT WORK. And the NSAID, Cambia gave me a terrible reaction to the point I was unable to eat for about 2 weeks. So “sdavis” I can’t say which one of us had the most disappointing outcome. We are probably both tied. It’s been 2 years, I do hope you’ve found relief–I am now starting at a pain clinic. I wish you everything well.
By Nancy Harris Bonk Moderator
Thank you for sharing your experience with us, although I’m sorry you didn’t have a particularly good experience.
Cambia now has more potentially severe side effects for those with cardiac issues. We have information on this in this link; https://migraine.com/blog/migraine-drug-cambia-associated-with-increased-risk-of-heart-attack-stroke/.
Just a quick thought – have you kept a migraine diary recently? Migraine triggers and patterns change over time, so what once was a trigger may no longer be, and the opposite holds true. For example, I didn’t have a problem chopping raw onions until a few years ago. Now doing so will trigger a migraine. I am also noticing perfumes are more problematic too – strong, “smelly” perfume will trigger a migraine unless I can get away from the smell. To keep a dairy today is pretty easy. There are plenty of apps for smart phones, and quite a few to choose from for computers. And of course there is the “old school” way using pen and paper! The Migraine Meter is one you might want to look at here; https://migraine.com/migraine-meter/.
Let us know how you make out at the pain clinic, OK?
I too had a terrible experience there. Condescending neurologist. He grew very ANGRY that I would not allow them to repeat a test that Johns Hopkins did….that test almost killed me, I was legally dead for 10 minutes so NO I am not doing it again. Mayo is so conceited that they consider any other hospital incompetent insist on redoing things that really don’t need redoing.I mean, Johns Hopkins is not exactly a hillbilly hospital. I remember when I left I looked at the paper and he had checked “DISMISSED” like I was a bad student being sent home. They run their own “program” for people to learn to “deal” with chronic pain without using medications. A real cash cow for them no doubt, as patients attend all day for a month I believe, maybe longer. I am sorry, but putting me in a room and telling me the pain is all in my imagination and that I should just “deal” with it is NOT helpful. I highly doubt any one of them suffers from severe migraines. I had such high hopes for the Mayo and IMO it was a HUGE FAIL!! If only they were as good as they *think* they are.
Please don’t take this the wrong way….I know you were hoping/expecting that the Dr. would have some new ideas for your headaches and instead you got more of the same treatment plan…..BUT be happy that you did not have the experience most common on here…that the doctor 1) accuses you of being a drug addict 2) doesn’t believe in your stated level of pain. These are the two most common reactions, and they often accuse people of doctor shopping when they try to seek a new doctor who might help them. I came from a smaller town in VA where my doctors were excellent and knew me and my case well. They never ever made me feel like I was bothering them with questions or that I was wrong to complain of pain. When I moved to FL it was like a different country. Here there are so many bad folks trying to illegally obtain drugs that you are automatically ASSUMED to be a criminal. Guilty until proven innocent. I swear you could come into the ER with an amputated limb and be accused of doing it just to obtain drugs…that is how it goes here. I have not received any new insights into treating my migraines, but I have managed to dodge the bullet of surgery here (here? NO way) and obtain the same old meds I was on when I arrived. That is one big reason I have remained here despite really wanting to move. The evil I know may be better than the evil I don’t know. By this I mean things may be worse, doctor wise, if I move somewhere else. I HATE being chained here because of this reason but that is honestly the only reason I am still here. Now the house is for sale (I rent) so I will have to move very soon. I hope things work out with finding a new doctor but I have a good idea of what I may run into.
nicolaxoxo – I think I would have been horrified as well. That said, I know a few of the Migraine and headache specialists there and can’t imagine them treating anyone so terribly. So I am wondering – was this the pain clinic? Was this a neurologist or a Headache and Migraine specialist? Each department is different.
I have to admit that one of the worst doctor experiences I ever had was at another Mayo’s. This was years ago and was a different specialty. Can you believe the guy was consistently disrespectful to the point he actually allowed himself to be interrupted and did a magazine interview DURING my appointment, with me sitting there on the table waiting for him as we listened to his conversation? Unbelievable. Then he refused to tell me anything. Told me I had to go to my referring doctor for information. My referring doctor couldn’t get them to send my records, so I ended up having to hold my payment hostage to get the results of my days there. Hubs was with me and to this day refuses to talk about going to another Mayo’s facility. That said…
My own headache specialist is in the middle of opening up a new practice and found herself working for them. I will be seeing her *at a Mayo’s clinic* in just a few weeks for my Botox injections! I admit, part of me is scared because of everything I went through before. But it’s honestly not the clinic you’re seeing – it’s the individual doctor. Concentrate on the doctor, not the institution. That’s my best advice.
Where did you end up for treatment BTW?
Oh nicolaxoxo – This is just one great big ‘ol bowl of wrong. This just doesn’t sound like a Migraine specialist at all. Have you seen one yet? Oh, if I could just get you to one, I think you would be shocked at the difference. There are always the bad apples, but when you finally find one of the good ones, it is literally, life changing <3
I have suffered from daily chronic migraine since 2008 as a result of a brain trauma. In 2011 I went to the Diamond Headache Clinic in Chicago and saw Dr.Merle Diamond,her father
Dr. Seymour Diamond opened the clinic decades ago. I’m in Dallas but it was worth the flight to get some answers. One of Diamond’s doctors moved to Dallas to work at the Headache Center at Baylor’s Neuroscience Center and I see him now. I don’t want to tell you it was
a “cure all” and they made my headache go away but they are experienced, knowledgeable and Dr. Diamond is the most sensitive physician I’ve dealt with to date. She understands because she suffers from migraines as well. They own the 7th floor at St Josephs Hospital in Lincoln Park and have another office close by. I would do your own research about the clinic so you have all the info but I can tell you from my side it was the first place I found answers. The Dr she trained in Dallas works diligently to help me and has never given up on me. He’s available by email anytime and is now working with University of Texas Southwestern Medical Center to continue in the search to find relief for me. I am a particularly difficult case but he never stops looking for answers and Dr.Diamond was the same way. Hope this helps.
Sorry Melissa Dwyer, I read your email incorrectly. I thought you were looking for someone. But perhaps my info might help someone else. I’m glad you found someone you like and is experienced. That makes all the difference in the world.
Can anyone recommend one of the Virginia headache specialists? There are only a couple according to the MRF. I have a neurologist I’ve been seeing for the past 5 years, but I’m becoming increasingly dissatisfied with her care.
By Katie M. Golden Moderator
I’m not sure where in VA you live, but I love my Headache Specialist at Georgetown University, Dr. Jessica Ailani. If you’re in the Northern Virginia area she’s probably convenient for you. If you’re further south that may be a hike.
By Nancy Harris Bonk Moderator
It’s tough when we find it’s time for a new doctor and frustrating too! I’ve not seen any doctors in VA, but do know there are a number of them who have been certified in headache medicine within the last few years and may be good choices. Have you seen the list at the United Council on Neurological Subspecialities? Here is the link; http://www.ucns.org/globals/axon/assets/10300.pdf.
Good luck and let us know how you make out!
Help i cant find the article that gave topic about all the things that go with migraine to share with people to let them know its not just a headache. I had saved it and my granddaughyer deleted it somehow. There are some people i know that dont understand its more than just a headache.
By Katie M. Golden Moderator
Is this what you were looking for? If not, our Search function is really great and you may be able to find it that way, but I’m more than happy to help!
By Kerrie Smyres Moderator
If that’s not it, another similar article is https://migraine.com/blog/8-things-everyone-needs-to-know-about-migraine/.
We are now offering migraine surgery at the University of Miami Miller School of Medicine. Please visit our website.