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There is Help for the Chronic Daily Headache Sufferer: I’m Living Proof!!

When I was a young girl, I had a mild traumatic brain injury along with damage to my cervical spine (C1-C7) from being thrown off a horse. Within a few weeks to a month after that injury, I started experiencing a burning pain that began in my neck and shoulders and would eventually settle into my eyes and temples. Further complicating a diagnosis about the cause of my pain was a strong family history of migraine – so dr’s naturally focused their treatment plans around migraine. No one thought much about the injury I sustained.

Early on the migraine attacks occurred 3-5 times a month and over time they gradually morphed into daily, chronic headaches. Pain was my constant companion; it was the first thing I felt when I woke up, and the last thing I felt before I drifted off to sleep. I lived in a personal misery only another chronic pain sufferer can understand. I did not look forward to anything; I simply endured life day after day. I pushed on through the pain, not that there was any real choice – it hurt whether I worked or stayed at home – there was no relief in sight.

One of the most frustrating things I had to endure however, we’re doctors that would tell me that I caused my migraines to morph into the chronic daily variety by taking too many migraine medicines. I would gently remind them that the chronic migraines started well before Midrin, Imitrex or any other migraine meds were made available to me. I was allergic to aspirin and Ibuprophen from a very young age so my migraine attacks were primarily left untreated except for ice therapy that I discovered out of sheer desperation.

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Every day was filled with pain at some level but when the pain would elevate in my eyes, it flared well above a 7/8 on the pain scale and I had difficulty seeing, thinking, or bearing it; the pain was so severe and unrelenting that it caused me to vomit, cry, and eventually plunge into a deep depression that would lead me to consider ending my life. I felt that if an animal was subjected to as much pain as I was, it would be mercifully euthanized and put out of its misery. Why couldn’t I be afforded the same relief? I prayed every day that God would take away the pain, guide my doctors to find something that could be fixed that would ‘cure’ the pain, or if that wasn’t possible, I prayed God would just let me die.

I spent years (a literal lifetime) going to every head pain clinic in the country and tried every migraine therapy available for both preventive and acute attacks, all with little to no relief. I had excellent care, but the pain devoured my life and became my obsession. I scoured the Internet for news of any therapy that might offer relief. I would bring every bit of research into my doctors and we would try it all. Chiropractors, acupuncture, physical therapy, stretching, neck exercises, meditation, TENS, nerve blocks, medication, aromatherapy, hormone therapy, vitamin therapy, changes in diet, exercise, and lifestyle (I no longer drank beer, wine, or alcohol), even surgery. I begged my GYN for a hysterectomy as I was convinced at one point that hormones were the root of my suffering. Nothing worked – the pain was relentless.

For 35 years I endured this pain, bouncing from neurologists to head pain clinics, to traditional pain clinics. Some were extremely compassionate and kind while others were a nightmare. I went to the ER only a handful of times over the years because the way I was treated there was so inconsistent. Sometimes I would get immediate help from an ER doc that would treat my pain and vomiting because the sheer agony I was going through was entirely evident. However, more often than not, I spent hours waiting for care – all the while vomiting – just because a doctor was worried I might be an addict looking for drugs. Now I was not only in pain, I was also humiliated as well. I knew if I presented to the ER with bleeding, I’d be treated. But pain? No one can “see” or “feel” someone else’s pain so it was easy to ignore.

The absolute worst experience I had was with the medical director from a well respected academic hospital pain clinic in Northern California. He refused to believe my pain was more than a “simple headache” and accused me of seeking pain meds right in front of a medical student. He then discharged me from the clinic while I cried like a baby. I was so humiliated it took me years to get enough courage to ask for help again.

When I finally went back for help I found the most amazing team of doctors – this time in San Francisco where I’d recently moved to take a new job. I don’t even recall how I found them; I swear there was some divine intervention at play. In any event the greatest, sweetest, most compassionate and caring Internal Medicine doctor connected me with an anesthesiologist that specialized in severe and unrelenting pain. Much to my surprise and joy, he was just as kind and compassionate as the Internal Medicine doctor! I told him right from the 1st appointment that I was vehemently opposed to pain meds b/c they never helped me long term and that I had traumatic experiences going down that path previously.

After several visits with this new pain doctor and a few trials and errors of different treatments, he suggested an 8 hr ketamine infusion. I never heard of ketamine; with all of the research I did, I couldn’t believe there was something I hadn’t heard of or tried. I now know ketamine is somewhat controversial but it made me go from ‘no quality of life’ to real relief and freedom from the pain; for the 1st time in my life I have control over the pain!!

I think the “burning” nature of the pain made my doctor suspect of the RSD-like features of my pain which ketamine is generally used for, as well as the fact that I still occasionally (but rarely) get swelling in my neck. However, I can’t stress enough the importance of using a diary to track your pain. I use the free app “My Pain Diary” and I believe it made all of the difference in the world!

Previously, I never had a tool that I could share with my doctor that captured the objective nature of my misery; the weather, the time, the type of pain, potential triggers, what I ate, what I used to try to ease the pain, the severity and frequency of attacks – this information gave me the power to get to a real solution as opposed to my previous experience of only being able to tell doctors that the pain was excruciating every day. Special thank-you to Damon Lynn the developer of “My Pain Diary” app.

There is help for your pain; don’t give up and don’t let bad doctors dictate what you do. If you’re not getting the proper treatment, find another – don’t waste time. If a doctor tells you to try something and come back in 4-6 months, dump him because he just doesn’t get it. I’m living proof that you can get relief! Be diligent, be your own advocate, and don’t settle for anything less than the exceptional care you deserve!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • annam
    7 years ago

    You say so many things that hit home with me. I live in a medical wasteland and I am unwelcome with any local physician as an entity employs them all. That would be another thread. After my elderly, deaf husband and I had been severely abused by these so-called “health professionals” and I had noone, a nurse practitioner suggested something that brought me the only relief I had had in many years. It is based on a Japanese sleeping method but I modified it. I have a horseshoe-shape memory foam pillow for the neck and I sleep with it around my neck every night. While it seems a main issue I have is severe, genetic migraine I also have many deformed vertebrae, also genetic. My friend tried the pillow but it made everything worse–she has TMJ. It might be worth trying anyway. Recently I have been travelling hundreds of miles to get prolotherapy with one percent lidocaine injections. Also helping. I’m running out of battery so 8 end here.

  • Lifetime_Migraine_Sufferer author
    7 years ago

    Julie! You are so right! I think anything that helps – even just a little – is great progress toward helping our brains to self-soothe the pain. I talk to my anesthesiologist/pain med doc all of the time about alternative therapies and he says the key to their value and efficacy is continuous use and repetition. The more you use the therapy, the more you train your brain, muscles, and blood vessels to to relax when they hear the same music or bi-naurel beats. Most people just don’t stick with it long enough. While I don’t think the bi-naurel beats can completely eliminate a level 8-9 migraine all alone, I do think they help to lower the pain and sometimes when I feel a migraine coming on, I can successfully block it if I start using the alternative therapies ASAP. Thanks for your post!!

  • Julie
    7 years ago

    Lifeime_migraine_sufferer
    I too use bi-Naural beats. I have a few for relaxation and a couple for Migraine and pain relief. I just got an iPod this past August for my B-Day and I can adjust the volume a bit better, I go as low as I can depending on the migraine severity, but after I do my abortives and they work as much as they can I got to my darkened bedroom with ice packs on my head and heat pads on my neck and eventually it will lull me to sleep. Sometimes it will bring the pain level down. I’ve used them a few years and know it must be helping some because if I get up and take my comfortable aftermarket bedbuds out and shut it off and get up the pain will start to inch back up until I lie down and put them back in and turn the iPod back on again and force myself to be still until the worse part goes away and I can safely remove it or get up and keep it on. So it does work after time. So does the visualization and meditation combine them with the biofeedback. It’s the mind over body connection after a while of retraining your body and mind how to react. It’s not a cure but it helps lessen the pain or the response to pain to a slight degree and I’m all for it and if it can help you fall asleep during the roughest period and ride it out that way then all the more power to it-it seems to help the abortives work a tad bit better that way. In my experience. It’s still rough but every little thing helps.

  • Lifetime_Migraine_Sufferer author
    7 years ago

    Annam – I’ve tried so many things, I’m almost embarrassed to list them all. But when I get desperate from the pain, I’ll try anything. I’m sorry you had such a bad experience with your local doctors, I too lived in a small town for most of my life until I move to San Francisco and in that small town I experienced much of the same-I think they just didn’t know what to do with me and honestly wished I would just go away. I know it’s frustrating but don’t give up! I’ve been trying bi-naural beats for pain relief hoping that I can train my brain to “self-soothe” sometimes it works wonders but other times it doesn’t help at all but I’m going to stick with it because it probably gets better with time. I’m also using visualization to see the headache on my brain and watch it being removed, bit by bit, and finally, I am using yoga breathing techniques to reduce the pain. Find a better doctor, one that has had other patients like you – generally, the primary care doc’s that I saw had never seen a patient with such intractable headaches like mine. If that’s your dr’s experience, don’t waste time – go to someone else, save yourself a lot of grief and pain. You may need to go to a head pain clinic; one of the best clinics I went to was the Cleveland Clinic – everyone there was like us! They were innovative, compassionate, caring, and they understand. I will keep you in my prayers!

  • kathyhorton-bishop
    7 years ago

    You are telling us there is hope…don’t give up….I wont until I get some sort of life back….I’ve actually had docs tell me get used to it this is your life..you are going to deal with this pain the rest of your life….mine too got worse after an accident and neck injury….still looking for my magic wand….will let you know when I find it….

  • Lifetime_Migraine_Sufferer author
    7 years ago

    Kathy – dr’s can be so unkind. I had a dr tell me once that if I’ve had this pain all of y life I should be used to it by now (really?). No one ever gets “used” to chronic, excruciating pain. Keep looking. everyone’s headache’s are so individualized and therefore what works for one person may not work for another. It takes a lot of trial and error. But that’s exactly why you need to find a good dr. that is up to date on the latest treatments so you don’t waste time on anything less than the current state of the art for migraines.

  • Lifetime_Migraine_Sufferer author
    7 years ago

    The 1st time I had ketamine was in the physician’s office under a dr’s care; it was an 8 hour “awake” infusion but my dr. (a pain specialist/anesthesiologist) used anti-anxiety meds like versed to minimize hallucinations and it was fine. I was pain free for three weeks after so that’s how the dr knew I was a responder. Now I get a ketamine nasal spray from a compounding pharmacy and the dosage is so much lower there’s no real chance of hallucinating but you do want to stay home when you take it because its an anesthetic and makes you sleepy. I haven’t really had side effects except that its a bit caustic and can cause some stomach upset as some of the nasal spray inevitably goes down your throat. It relieves my pain fairly quickly when usually nothing has before. You need a new doc, not every one of them is up to date on the latest migraine treatments, nor are all of them comfortable with the non-traditional migraine meds that some of us require! See below for my dr’s name; SF isn’t that far from you. Good luck!

  • Janet
    7 years ago

    Gosh…just read about ketamine…may I ask what your dosage is and what, of any, side effects you experience. Sounds scary..I doubt I can get a doc here to prescribe it…
    Janet Jones Las Vegas

  • Janet
    7 years ago

    Your story had me nodding yes…yes…yes….I have been a sufferer of migraines for 36 years….my last treatment in patient was for DHE…huge huge disappointment and left me with horrible side effects….I am seeing docs now for a chronic case of hives…urticaria to be specific…and praying it isn’t lupus as one doc is suspecting….with a migraine at a level 9 nightly .. Zomig is now my best friend. I haven’t slept in 4 months…I mean at all and no doc is empathetic…I too am thought of a patient in search for drugs 🙁
    Melatonin doesn’t help much…out of pure exhaustion I fall asleep for 10 or 20 minutes, and after zomig I usually fall asleep for an hour. So the migraines march on and claimed my best friend’s life last February because God wouldn’t take her so she sent herself. I find myself thinking desperate thoughts but pray GOD WILL HEAR MY PRAYERS and lead me to a solution because all the docs I’ve seen gave up on me…that’s the hard part when they shrug you off with the comment ” that’s all I can do”. I am going to look up the solution that worked for you and start the exhausting search for a new doc since I only have 2 more refills on zomig. God Bless you and your story. Janet Jones Las Vegas

  • Lifetime_Migraine_Sufferer author
    7 years ago

    Janet: I’m so sorry you are going through so much pain; I really do know how you feel but there is help, you have to find the right dr. I personally can’t take melatonin because it will mess with my brain chemicals and give me a huge migraine. I do have trouble sleeping though but that’s all part of the migraine disease. For my particular treatment plan, I use ketamine as a rescue agent, and then Namenda, clonidine, and seroquel as daily preventatives. Even the seroquel has some pain relieving qualities but most of all, it ensures that I am able to sleep. I used DHE shots (gave them to myslef) for years and then they just stopped working; same thing for the triptans unfortunately. I’ve been visiting down the scary path your friend took and it isn’t necessary. The most important thing you can do is to take care of yourself and get a doctor that 1) knows about chronic, daily migraines (i.e., you’re not the 1st patient he/she has seen), and 2) don’t tolerate long waits or treatment plans that don’t work. You may even need a hospital stay to get your current attack under control. If a dr even looks at you sideways, find a different one because he just doesn’t get how bad migraines are. Any pain that makes a person vomit is extreme under the best circumstances. I will say a prayer for you and please don’t give up!!! I can’t tell you how many dr’s told me there was nothing more they could do; they just didn’t know WHAT to do. Please see below for my dr’s info; Dr. Bernard Wilcosky in Redwood City, CA. He is great and SF isn’t too far from where you are. I saw him every week until we found the right treatment plan. Now I see him about every 4-6 weeks to make sure I’m still doing well. Wendy

  • Lifetime_Migraine_Sufferer author
    7 years ago

    Thank you to all who have commented on my story – I pray for each and every one of you. I am not “cured” – I still have bad days but at least it’s not every day, and I no longer flare up to a level 9/10. I will continue my quest for a “cure” as migraines have stolen so many days from my life and I refuse to let them beat me. I get tired and I know you do as well, but keep researching and pushing for the right care. You should at the least find some relief – if you’re not happy with the results you are getting, find another doctor ASAP/one that LISTENS. Warmest regards, Wendy

  • Lifetime_Migraine_Sufferer author
    7 years ago

    Carolyn! Thank you for sharing your story. You are so right about different medicines for different people; for me opiods would help a little, but then I’d get a huge rebound migraine the next day, so it just wasn’t worth it. Thank you for your kind words and prayers; all migraine sufferers need our prayers!

    Wendy

  • cancan
    7 years ago

    I have suffered with migraines since I was 8 years old. No doctor back then knew what to do, although our doctor DID believe I was in pain, I am now 73 years old.
    After suffering with no help until I was 28, I finally found a doctor who gave me w/codeine and my pain was GONE in 20 minutes!!! A miracle! No more vomiting, no more hours and days in bed, no more suffering….I was able to have a life, and I did have wonderful life! But, to make a long story short, 10 years ago, after retiring, my headaches came back with a vengeance, so I kept increasing
    the Fioricet….which was not good but my doctor, (still the same wonderful doctor who helped me at age 28) got very sick, and passed away!!! It has been a horrible life ever since….until 5 months ago! A new dentist discovered I had a very extreme case of TMJ…a new MOUTHGUARD was made for me and my bad headaches are down to one a week, compared to everyday all my life!!! But now to get off the Opiate Drug has been a challenge, I have been told by several doctors that I may never be able to do it. Right now I am taking 4 a day, down from 6-7 per day….I am tapering gradually, which is a must. I do go to Pain Specialists who will be doing an Occipital Block next week, hopefully that will stop the migraines I still do have. They have come so far in treating migraines and everyone needs a different type of treatment, what works for one, usually won’t fully help another. You name it, I have tried it, for 65 years! The Fioricet w/codeine gave me a life, even though I may never get entirely off of them, I DO have competent doctors, finally, who understand my situation and are doing anything and everything for me at my age! As I said, this is a “short” story….but these days there is lots of help out there, keep trying, and if possible, don’t turn to Opiate Drugs. But back so many years ago I had nothing else, except to lie in a dark room with ice on my face, neck and wherever else the headache pain effected, it was not good for 20 years. Good luck to all, I will pray for you that you find just the right doctor….and get the “specialized” treatment you need. And thank God for the Internet, I started searching on it years ago, when there was still so many doubts that migraines were truly a disease, I would beg for help from any medical website, even 15 years ago!!!! I think someone finally heard me!!!!

  • Smogzilla
    7 years ago

    elderberry wine will sometimes stop the beginning of a migraine for me.

  • Lifetime_Migraine_Sufferer author
    7 years ago

    Wilma – I will take a look at your website; interestingly my husband and I have just been discussing water quality and the effects it may have on our health. Thank you!

  • Lifetime_Migraine_Sufferer author
    7 years ago

    Carolyn! Thank you for sharing your story. You are so right about different medicines for different people; for me opiods would help a little, but then I’d get a huge rebound migraine the next day, so it just wasn’t worth it. Thank you for your kind words and prayers; all migraine sufferers need our prayers!

    Wendy

  • wilma
    7 years ago

    I don’t promise a cure for migraines and I am not a Dr. but many people are finding that drinkong Kangen water cures migraines. Some have found ajmoat instantly and some takes several weeks for the cure. Check out my website at and get in touch with me. I might be able to find free water for a few weeks in your area.

  • judetteromero
    7 years ago

    This story brought tears to my eyes, it was like I was reading my story. I’ve been looking for relief for over 20 yrs, but unfortunately, don’t have the resources to travel to see specialists. I’ve almost given up…

  • Lifetime_Migraine_Sufferer author
    7 years ago

    Please don’t give up! I will pray for you – there is help available from the right doctor, be persistent!

  • Bernette Finley-Drawe
    8 years ago

    thank-you for sharing.

  • Lifetime_Migraine_Sufferer author
    7 years ago

    Thank you for the information; again, something I’ve never tried!! 🙂

  • Bernette Finley-Drawe
    8 years ago

    Woman says 4mg decadron, 30mg toradol, 1mg ativan and 25mg benadryl has given her 3 months of no migraines. I am taking note.

  • Jeanne Endicott
    8 years ago

    This is very inspirational. Thank you. I’ve had chronic migraines for over 7 years & not 1 doctor has yet to take me seriously. I’ve seen countless doctors, statewide and they all think that because of my age (i’m 24), I’m just another addict, looking for my next fix. I’ve given up on doctors and just live with the pain and agony, but reading your story has inspired me to try again and find a solution. Again, thank you.

  • Lifetime_Migraine_Sufferer author
    7 years ago

    I know it’s difficult and a long road to get the right treatment but you have to be persistent! I will pray for you!

    Wendy

  • wilma
    7 years ago

    I am a distributor for a Kangen water machine that many people have found has cured migraines.My website is . If you get in touch with me I will try to locate some where in your area that could give you free water to try Good luck to you.

  • J. Blake Harris
    8 years ago

    Interesting story!

  • Wendy Atlas
    8 years ago

    by any chance is the doctoring you are talkng about in Northern CA a man by the name of Neil Raskin at USCF in SF.

    I recently underwent a 3 day IV push- I had it done for 3 consecutive days in March and hav2 not had a headache since. I know go to MAYO Clinic in Phx.

  • Lifetime_Migraine_Sufferer author
    7 years ago

    Elizabethglenn – all of my most recent treatments (over the last year) have been in the San Francisco area with Dr. Wilcosky but the treatments I received at the Cleveland Clinic were very helpful as well. The treatments were completely different but still very worthwhile. At the Cleveland Clinic’s head pain clinic, the 1st thing I noticed was that every patient there was like me – constant, debilitating pain! The treatment used there consisted of three to five day outpatient IV infusions that slowly delivered approximately ten different meds (none of which were narcotic). If I recall, they were given slowly and consecutively and included drugs like benadryl, anti-emetics, muscle relaxers, depakote, and DHE (dihydroergotamine). Each session lasted about 8 hours but is was so peaceful and dark and cool in the infusion rooms, most people slept or listened to relaxing music and it was tremendously helpful for the daily pain cycle I was in. At nite, they just capped off the IV and all of the patients stayed at a local hotel. If I recall, my insurance paid for most of the visit. It’s a great option if the Cleveland Clinic is nearby and their doctors and staff are extremely compassionate. San Francisco may not be an option for everyone but the treatment I’ve receive from Dr. Wilcosky has been a better option for me to be able to manage the pain on my own as opposed to going in for regular infusions as my life is very busy with a job that requires quite a bit of travel, and in the past I dreaded travel – now I don’t find myself fearing it so much because I feel like I have some control over the pain. Good luck!

  • elizabethglenn
    7 years ago

    Wendy Boutell, was your latest done at the Cleveland Clinic? Was the combiation of medicines done by IV? I am desperate to find some relief. I live in SC and have considered Mayo in Jacksonville or Cleveland. I have been to Diamond in Chicago but it is so far away. Thanks for any info!

  • Wendy Atlas
    8 years ago

    4 mg decadron, 30 mg toradol,1 mg ativan and 25 mg benadryl, have not had a headache in 3 months

  • Wendy Boutell
    8 years ago

    Wendy – I’ve had a series of infusions (5 full days at Cleveland Clinic) and they were tremendously helpful until I got home 🙁
    Would you mind sharing what type of meds were used? Thx! WB

  • Wendy Boutell
    8 years ago

    I’ve been to Cleveland Clinic, Dr. Saper’s Clinic in Ann Arbor, Mayo, UCSF, and UC Davis among many others.

  • Wendy Boutell
    8 years ago

    I saw my dr today and asked permission to give out his name:
    Dr. Bernard Wilcosky (pain med/anesthesiologist)
    Redwood City, CA
    650-368-7246
    The best!!

  • Wendy Atlas
    8 years ago

    He did retire- I am currently being treated at Mayo Clinic is Scottsdale AZ- I was under the care of Dr. Rasking for many many years when I lived in SF- when we moved in 2004 he referred me to Mayo

  • Teri Robert
    8 years ago

    Hmmmmm. I thought Dr. Raskin had retired, Wendy. Have you been to the Mayo yet?

  • Cary Dominguez
    8 years ago

    What is “RSD”?

  • Cary Dominguez
    8 years ago

    Thank you:)

  • Wendy Boutell
    8 years ago

    It’s a progressive neurological disorder that causes pain signals to flare and usually strikes women between ages 40+ but the website aboutrsd.com can provide a lot more depth of an explanation. Thanks!

  • Wendy Boutell
    8 years ago

    According to the aboutrsd.com website there are two types of RSD: “

  • Wendy Boutell
    8 years ago

    Elizabeth – thank you for the kind words and honest comments! I think it’s so important to get the real and unpleasant information out about the debilitating nature of migraines. I will pray you get relief!

  • Lifetime_Migraine_Sufferer author
    8 years ago

    Georgia – thank you for your comments, I hope someone out there will be helped by your experience. I will pray that you get relief!

  • georgia
    8 years ago

    I see a doctor for pain relief. The machine I have from him will get rid of migraines and bad headaches, and for a period of time too. The machine is expensive and is portable, however has to be plugged into an electric outlet to use. I do not know if he takes patients with migrain only pain. I have severe and unrelenting arthritis pain, spinal stenosis, TMJ, an immune disease similar to rumatoid arthritis, and had three accidents where my head was injured, and could barely walk when I first went to him. I am not completely out of pain, but I can get around without wanting to scream from pain now, and I enjoy a few days each month now. I can do some chores, slowly when before it was difficult to get to the john. He is in Corpus Christi, Tx, and has his own pain center there, specializing in RSd and Parkinson’s, and some other health related pain. He has to see a first time patient for 6 weeks, each day, plus some days training on the machine, if they go to him wanting the machine. I have heard of quite a few doctors who have these machines, however, I also heard they did not work GREAt, like the machine this doctor built himself, and I have heard of one person who did not respond to this treatment. I did see dozens each week walk out of his clinic on their own, when they were wheeled in, plus, they were out of pain. His machine relieves me of my head pain, when I used to have to go to the hospitals for treatment and injections, and now I have only to plug in and hook up, but it does take time for a treatment. I take a treatment two times daily.

  • Marisa Condit Adrian
    8 years ago

    Can you share the names of the SF doctors who helped you?

  • Lifetime_Migraine_Sufferer author
    7 years ago

    Dr. Bernard Wilcosky – Pain/Anesthesiology
    Redwood City, CA
    650-368-7246

    Dr. Sherna Madan – Internal Medicine and Endocrinology
    San Carlos, CA
    650-631-6800

  • Wendy Boutell
    8 years ago

    Please see above (Dr Wilcosky)

  • Teri Robert
    8 years ago

    Dr. Peter Goadsby is wonderful!

  • Wendy Boutell
    8 years ago

    Please email me at boutellw@gene.com so I can share my doctors names.

  • Marisa Condit Adrian
    8 years ago

    Wonderful story of hope. Thank you for sharing. I am so desperate for help. I won’t give up.

  • Elizabeth Taylor Glenn
    8 years ago

    Wow! I needed to read this today! I have been in pain for 12 years. I did have migraines before but I was able to find preventative meds that helped. I had my daughter in ’99 and the migraines came back. I also had a hysterectomy but my migraines were worse. I do have family history on my maternal side. My grandmother, mother, and aunt had relief after their hysterectomy. No luck for me! In the past week my symptoms have gotten worse. I understand your despair. I feel the same way. I went to the ER on Saturday and felt like a drug seeking criminal. I have facial spasms with my migraines so you can tell I’m in pain. I plan to go to the Mayo Clinic in Jacksonville. I just pray that they can help. Good luck with your doctors and your relief. Thanks for being so open and honest.

  • elizabethglenn
    7 years ago

    Wendy, I guess that the first time I read this post, I must have been in a full migraine or asleep!! I read what you are doing. I am going to talk to my new neurologist about it. Thanks for all of your info. I haven’t been to Mayo yet because my other dr didn’t seem to care.

  • Wendy Boutell
    8 years ago

    Elizabeth – I too had an Aunt that I thought had very similar levels of pain and frequency with her migraines; she had a hysterectomy and her migraines went away which is precisely why I tried it. Unfortunately my migraines did not get better, in fact they got worse — I was so disappointed. But other meds that help me on a prophylactic basis are Namenda (it blocks the same N.M.D.A. receptors that ketamine does), and I take seroquel 100 mg at night time. Those meds are all part of my overall pain management plan. However, the ketamine whether I use it for an acute attack or as preventative in the evening, seems to be the most helpful. I’m not one of the lucky ones that was super-successful with Neurontin/Gabapentin, or Topomax either. So maybe the above information may help if you haven’t tried those options. Namenda was like night/day for the nagging daily level 4/5 pain and worked after about 3 weeks. FYI – I tried every major clinic in the US, and they all seemed to take a more traditional path for treating migraines which didn’t work for me of course, but I truly help you get long term relief!! WB

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