Forums


Diagnosis of Migraine & Headache Types

Diagnosed with Atypical Chronic Migraine – Migraine Every Day!

  • By Anthony

    Hello, I was recently told (diagnosed I guess) that I have atypical chronic daily migraine or what some doctors I’ve seen are calling CDH (chronic daily headahce). I used to get headaches maybe 1-2 times per week and an ibuprofen and a coke would eliminate them pretty successfully. Now, 1 or 2 ibuprofens doesn’t do anything. I might as well be taking skittles. This all started last year in May when I had a severe vertigo attack that sent me to my local ER. I had severe spinning and my eyes were shaking due to nystagmus. I thought I was having a stroke! At the ER they told me I had benign positional vertigo, gave me some ativan and meclizine and sent me home. Those drugs actually took care of the vertigo and anxiety I was having, but about a week later I started having daily headaches. Actually, after the vertigo attack I was having severe panic attacks almost daily, but no headaches. Then the panic attacks lessened, but I developed a daily headache. This wasn’t a normal headache for me however as I was seeing spots (both black and bright flashes), feeling weak and dizzy, and tons of brain fog like I had been hit in the head. Pain level would fluctuate on a daily basis anywhere from a 3-8.

    Now almost a full year later, I still have the daily headache/migraine with auras, haven’t worked, and developed a significant amount of neck pain on my left side to the point where I cannot touch my ear to shoulder or do any streches where I’m tilting my head that way. Been to physical therapy and do those exercises everyday, but find no relief. Changed my diet to gluten-free and sugar-free for the most part, and still no change. Stopped drinking all caffiene, teas, sodas, etc. and now just drink water and milk (just reintroduced milk back into diet this past week). Been prescribed a ton of medications that I had bad side effects to or just couldn’t handle.

    I go to bed with the same migraine headache every night and wake up with it. I am able to sleep for the most part, but the migraine never goes away. It’s not a 9-10 pain scale every day thank God, but it’s always there and it’s ruining my life. Will I ever see relief and have my old life back? I used to be an avid mountain biker and athlete, and now all I can do is take walks around the block. Then I’m back home icing my head and lying down. I’ve even considered taking the easy way out and giving up with suicide, but I have friends and family who care about me and I could never harm myself. I know folks here have it way worse than me and I am terribly sorry. I feel your pain.

    I guess my question is, has anyone with chronic daily migraine/headache found a solution or found out they were wrongly diagnosed? I always feel like I may have MS or something even though I’ve had a CT and MRI that were normal. Every day I feel super weak like I haven’t eaten or drank water (even though I eat really healthy and drink lots of water), I’m dizzy, unsteady, and my brain feels like fluff. It’s maddening! I’m just at a loss of what to do so any support, advice, whatever would really help. I just need hope for the future! Thank you.

    Reply Created with Sketch. reply
  • By rebsho

    I don’t have an answer for you, but FEEL YOUR PAIN (I guess not literally, haha) and have a headache everyday too. I would love to hear if anybody has some helpful info too. Hang in there!

    Reply Created with Sketch. reply
  • By Anthony

    Hi, thanks for your support and sorry to hear you have the daily headache as well. I hope that you find relief soon. Hang in there as well!

    Have you or anyone else here ever experienced weakness with or without the head pain? I feel very weak every day and often feel like my legs are going to give out or “buckle”. I’ve read that weakness can be a symptom of migraine, so maybe that’s what it is, but it’s pretty scary. I’m relatively young (early 30’s), in good shape, not overweight, and pretty healthy, so I can’t see what else would be causing it. The weakness is a daily thing and will be there no matter the scale of pain. It was especially bad today where a few steps felt like I had even taken them or like I was walking on a cloud. I also get vertigo still from time to time, especially if I lay on my left side (where bad neck pain is) and then get up.

    Reply Created with Sketch. reply
  • By Michele

    Before I began reading this, I thought I had some type of undiagnosed cancer that would come out…how can symptoms so bad, without an actual headache pain be a migraine I would think. Many days, I can hardly wait to go to bed in hopes that the next day I will wake to a “better day”. All days I have the brainfog, wooziness, but other days the facial numbness/tingling sets in with any motion making me feel like I am experiencing carsickness. White lights….HORRIBLE!! Sometimes just someone talking with their hands in front of me makes me feel sick. Mine started with perimenopause…just randomly. I am sad that others are going through this but am glad to see that I am not crazy in my symptoms.

    Reply Created with Sketch. reply
  • By Michele

    AWEST…you sound like me….very athletic and now this makes you feel like you are rapidly aging. I also have wondered if I have been diagnosed wrongly but until more symptoms arise…don’t know it could be tested further. I know your sadness and the want to just be normal. I want the same thing. I am glad you have a wonderful support system of people who care about you. One day at a time and hopefully one day we will all wake up with no symptoms…that is my hope.

    Reply Created with Sketch. reply
    • By LillieLynne

      Michele, I feel your pain! I grab peoples hands all the time or shut my eyes. I can not go to the store or out to eat or watch TV. Ive been told I no longer process movement properly that is why it bothers me, another doctor told me its stimulation overload. That the migraine has its limits of what else I can process and that I do not process the noise or the movement without getting very sick.That may help you in understanding your circumstances.
      I drive and if someone passes me I go backwards. I pass someone they went backwrds. So I can only take 2 lane roads and only drive a short distance. The fog prevents the proper processing if that makes sense to you.

      Reply Created with Sketch. reply
  • By Anthony

    snowangelmc, it’s like a switch was switched on in my brain to create the daily headache. I feel like something triggered it, but not sure what. Every day is a struggle now as I find myself even having difficulty making my own lunch. I feel disabled. I too often relish in the thought of sleep as it’s the only time I can zone out, even though I am often awakened with sharp pains behind an eye or what not. As a matter of fact, my daily norm is to wake up to some pain behind an eye (right or left doesn’t really seem to be a pattern), neck pain, and overall wooziness like a hangover. I often tell people it feels like I have the flu, but without the fever or vomiting. I can only imagine what this is doing to my body though and wouldn’t be surprised if it’s aging me. Do you think a daily migraine ages us or puts us at risk for other issues down the road? I may not even want to know the answer to that question! I too have had thoughts about undiagnosed MS or cancer. It just often feels like I am dying. Anyways, it’s nice to have support here on this forum and like you said, one day at a time. Thoughts and prayers your way!

    Reply Created with Sketch. reply
  • By Alli

    6 months ago I underwent sinus surgery and woke up with a migraine which has not ceased since. Like you, awest, it is not always severe, but I go to sleep with it and wake with it each morning.

    I am in my mid 20s and used to exercise quite a bit, now I’m struggling to keep up with everyday life.

    All tests came out normal, no one knows why I suddenly suffer from constant head pain. So far none of the tripe and have alleviated the pain, preventatives have helped only a little.

    Sorry others are feeling the same. Hoping for answers.

    Reply Created with Sketch. reply
  • By Lily

    Hi everybody, I think, not that I’m any expert, it sounds like u have ( bear with me I’m not going to get the name right) trigeminal neuralgia. Especially if u are having fascial symptoms. Have any of u checked this out? Just Google if nothing else, out of curiosity. It may have a different name too but the trigeminal nerve part is right. Please don’t think u are crazy! I have daily headache/ migraine. Is anyone having a right sided headache? It may be called hemicrania continua.Its an inflammation based headache that can only be treated by indometh icin (sp).This headache made my diagnosis tricky. I had to get at least somewhat better to figure out I was actually having two headaches the HC and the migraines. Botox has helped both. I can’t say I’m cured but its definetly made a difference. How about Magnesium and Really good B vitamins?I’ve had some success with them.I hope at least some of this info helps somebody. I’m so sorry u all are feeling such pain and disability. I am struggling too but I think I am a little further in the diagnosis process.Lillybeez

    Reply Created with Sketch. reply
    • By TurboSloth

      Lillybeez, thanks for the brief reminder regarding hemicrania continua. I’m going to ask about this as I too have not been a day without a headache in my life and have tried a slew of remedies to no avail. If I may ask, how quickly did indomethacin resolve your issue? Could you feel it’s effects immediately?

      Reply Created with Sketch. reply
  • By Lily

    The other thing I’m wondering is if you’ve had blood sugar testing at all. I think I’m finding a link between hypoglycemia and my headaches. Partially by studying my son. Unfortunately my 7 year old son is getting migraines too. We have found we do better if we make sure to have plenty of protein with each meal and snack. We make sure to eat every two to three hours especially if we are physically active and in my case I really can’t have any sugar even fruits and vegies will bother me if I’m not very careful. Hypoglycemia can cause headache, nausea, brain fog, weakness,flushing.and probably a few symptoms I forgot. There is Als o something called reactive Hypoglycemia. Most MDs don’t believe in this but if u do alternative medicine they do and from experience I do. Basically is u eat junk your blood sugar will drop because of the sugar an hour to three after u ate it and protein isn’t always enough to stop it. Hormonal shifts can cause hypoglycemia too. Good luck all its time for me to go eat! And to feed my son. Protein shake here I come! Lilybeez

    Reply Created with Sketch. reply
  • By Michele

    I guess I am the lucky one as I am not having pain…just bilateral loss of sensation in face that comes and goes, tingling and wooziness.Am going to look into the hypoglycemia. Looked at the trigeminal neuralgia…but luckily no pain. Took a draminime today to see if that helps. Good luck.

    Reply Created with Sketch. reply
  • By Lily

    Snowangel, unless the you’ve had several Dr. Opinios to the contrary I wouldn’t Give up on the trigeminal neuralgia even without the pain. You can have migraine without the pain, wgwhy not trigeminal neuralgia! Believe me You are talking to the queen of weird here! I astound Dr.s with strange symptoms and diagnoses! I hope the hypoglycemia angle helps. FYI
    Dehydration can also cause hypoglycemia! Lilybeez!

    Reply Created with Sketch. reply
  • By Michele

    Thanks for all of the input. I will definitely check them all out. Routine blood tests come back good. Used to go to gym and do all of the weights..can’t do the pulldowns anymore as it puts pressure on my neck and seems to make symptoms worse. Almost like the muscles in my neck are pulling the muscles in my face down….hopefully one day will find normal. Glad you are finding soloutions.

    Reply Created with Sketch. reply
  • By Lily

    Snowangel, do u do chiropractic at all? TMJ Symptoms? I have neck symptoms too, but its hard to tell whether the headaches are causing the neck pain or vice versa same with the TMJ. I have found solutions for most of my issues but my headaches continue to confus everyone. Chiro, neuro, rheumatologist, nutrionist. No one understands why I get them or the sugar connection. I still have daily headaches and when I get a migraine it lasts for a week the acute meds don’t work. So the solutions have lessened the pain level to some extent but have not gotten rid of them or gotten me past a 2-8 on the pain scale on a daily basis. I’m sorry that u are having such trouble the only reason I m this far is because I was relentless with Dr.s if they told me they couldn’t help me I went elsewhere. I researched and found info myself. I can’t imagine being as active as u were and losing that. I just want to get every day stuff back, but it sounds like u had a high fitness level too. I hope u can find the answers u need but don’t give up. U Know your body best. Dr.s are smart but they all approach things differently.

    Reply Created with Sketch. reply
  • By Anthony

    Just wanted to bump this thread to see how everyone was doing. Lilybeez? Snowangelmc? Amethyst? Has anyone gotten better or seen improvement? I’ve just been prescribed nortriptyline which is a new medication for me. Gotta be something that works!

    Reply Created with Sketch. reply
  • By Michele

    Still having the wooziness, facial tightness at times. Trying PT for vestibular strengthening now. Had a VNG done and it showed left sided “MILD vestibular weakness”. Going to give it a try. Also got diagnosed while drs were checking me out with a inverted paplioma in my nose. Looking back, they saw it three years ago and it never got discussed in the MRI or even noted that it was there…ODD? Have to get that removed. The sad thing is that the drs say it isn’t causing any of my symptoms…got excited, thought maybe it was. How is everyone else?

    Reply Created with Sketch. reply
  • By Anthony

    Snowangelmc, nice to hear from you. I totally understand the wooziness…I get that everyday. I’ve also had PT, but for two separate issues, one being neck pain. It helped slightly, but more work needs to be done. Everything is a process and takes time. Fortunately, I haven’t had a bad spell of vertigo lately…knock on wood. Let us know how the PT goes. Best wishes.

    Reply Created with Sketch. reply
  • By Schmee

    Your story is very similar to mine. I never had headaches before my vertigo attack. Its just so weird! After the first vertigo, which was debilitating, the vertigo went down and the migraine pain came up, almost in direct correspondence.

    I think you are the first person who’s had a story which has so echoed my own so closely. And I work in the medical field and so see a lot of migrainers.

    I don’t have pain free days. I have lots of pain days and I have a little pain days. Today is a 6 out of 10, even with all the medicine I’m on. Three days ago, I was at a 1 or 2. The weakness, the neck pain, the depression, the occasional feeling off balance. They are all familiar to me.

    I don’t have a cure, but I am pretty functional. I hold down a job. I go for stretches where I can even have a social life. If you would like to know what I’m doing, I’d be glad to share, but is not one thing. Its a regimen.

    I just did another round of doctors, including an otologist, to rule out ear problems. I was “unremarkable” in his words, but there is some damage to my left ear.

    My neurologist is trying to get me approved for botox. I’m excited to try it, as I haven’t found any medicine other that percocet that helps. And one can’t just take percocet all the time – something about addiction and potentially killing you, dammit. lol

    For some reason that I don’t understand, I’ve never had a doctor who will let me try medicines in the class of Imatrex. Maybe its something to do with the ongoing nature of the headaches. I’ve never been given a straight answer on this one.

    Reply Created with Sketch. reply
  • By Anthony

    Hello schmee,

    Interesting that we have such similar stories. I’m sorry you are going through this as well.

    I’m on Nortriptyline now, but it is not helping. I’m seeing a pain specialist who thinks my symptoms were caused by a arterial dissection or spinal fluid leak. They are unsure however. I forgot to mention that I do have about 50% compression of my subclavian artery on my right side from a past biking accident. Since this artery branches onto the carotid artery that feeds the brain, they think there may be some correlation here. Again, they are unsure. I’m seeing the specialist again today however, so I will keep you posted.

    My vertigo attack happened when I whipped my head around in a store. It wasnt a super violent turn, but it did bring on the vertigo. One theory is that this caused a tear in my arterial wall. How did your vertigo strike?

    I was also told I could get botox, but not until I try other medications first. It’s a last line of treatment I guess since it is so expensive. As for other medication, I too find that Percocet (or Hydrocodone in my case) is the only thing that brings the bad headaches down. I don’t take it every day…only as needed, as I too have heard about the addiction problem. They prescribed my Relpax, but I only took it once. It’s an abortive meant to get rid of a migraine when it first starts. But since I have facial and head pain everyday, it’s useless to me. You’re only supposed to take that type of med a few times per month. I still take advil nearly daily just to get very very slight relief. Most of the time it does nothing…I don’t even know why I take it!

    Reply Created with Sketch. reply
  • By Schmee

    With me, the vertigo started while I was sleeping. But at the time, I was working with adults with developmental disabilities and behavioral problems. I got hit multiple times. Once with a closed fist to my chin. (From an adult male. I’m a woman. I didn’t go down or bruise but it was a hard hit.)

    What you say about cause is interesting. My GP wanted me to get a sonogram of the neck to rule out arterial problems, but my neurologist said it wasn’t necessary. Maybe I should go through with it anyways, just to be sure.

    I’m getting the same story about trying botox. The doc thought it was the best option for me, and he’s an expert in giving it. But we have to go through insurance approval because I can’t afford it alone. I was a miserable failure on nortipyline, experiencing what I think it must be like to be manic in people who have bipolar, and I just failed on topa-hitler, too. It took away my short term memory to the point where I couldn’t remember what time of day it was or if I had patients that I should be looking after. Terrible! I should be hearing back about the botox any day now. (Trying to be patient, and to not let my hopes get too high. They will likely have more hoops for me to jump before paying for me to try it.)

    The doc has me on Floricet for pain now. Its not as effective or as fun as percocet, but has all of the addictive potential. This isn’t really a long term solution. I’ve been bad for 4 days now. I know I need to stop taking the floricet because I will end up in withdrawl if I don’t. It sucks having such a sensitive system.

    Reply Created with Sketch. reply
    • By Anthony

      Hi schmee, I would say get the ultrasound since it is non-invasive. Not sure how much it would show, but it’s worth trying. I’ve had an MRI with contrast, a head CT, and a Thoracic CT with contrast. Lots of radiation that I’m not too happy about, but it is what it is. The new doc I have is having another neuro-radiologist look at my scans a second time. My guess is they most likely won’t find anything new.

      My pain is mostly in my face around my nose, jaw, and eyes. I get “headaches” on top of the daily head/facial pain a few times per week. Sometimes into full migraines. I also have what I would describe as brain fog and an overall hazy feeling everyday. Sometimes it’s so bad I have trouble walking and thinking straight. I’ve asked if this was a headache symptom, but they are unsure. I never really get a straight answer. It sucks.

      I was taking advil nearly everyday, but have since tried to cut back to a few times per week. They too told me it would cause rebound headaches, to which I replied, “Well, I already have a daily headache so I can’t see how I could get a rebound headache. Even if I don’t take any pain killer at all, I still have daily pain.”

      As for the nortriptyline, my does is low, but they want me to get up to 100mg! We will see how I fare on that. Interestingly, I tried amitriptyline (cousin to nortrip) and developed a tremor so I was taken off. I’ve never tried Fioricet, but I’ve heard of it.

      I hope that we both find solutions. I am still optimistic.

      Reply Created with Sketch. reply
    • By Camassia

      I’m also diagnosed with atypical chronic migraine. I have symptoms every day, sometimes milder, sometimes worse. My vertigo is milder but I’m frequently dizzy. I’ve had very infrequent three hour migraine attacks before the daily headaches started this year in September. I never took any medication as the headache wasn’t so bad – I only knew it was migraine because of the nausea. Unfortunately I did not know then what a serious disease this is…

      My neck/upper back is in a terrible shape. I have frozen shoulder in both shoulders that started a year and a half ago – have muscle knots and spams all over. Since the migraine started this reached a severe level. A migraine attack will make my neck/muscles worse but seems like this also triggers an attack. I should be doing neck stretches for the frozen shoulder but if I bend my neck I’ll bring on an attack within a couple of minutes. I started seeing an osteopath but can’t say anything yet about the effectiveness.

      Initially I had daily sharp headaches with nausea and dizziness. Then in a couple of weeks the sharp headache disappeared and so far hasn’t come back. Yet I fear it will one day. Instead, I have facial pain that seems to originate from the trigeminal nerve. If sxs are mild, there is warmness, numbness and tingling. If bad, there is scalp sensivity and burning pain. If the pain is stronger, then the area affected is larger, covering the top of my head, deep into the ears, one side of my nose and upper teeth. I’ve had many of these sxs in milder forms for years and I had no idea I had migraine!

      With the nausea I have bad stomach cramps, bloating and in the mornings I frequently have diarrhea. Sometimes these sxs come on with an intense feeling of depression/anxiety. I have a history of depression/anxiety/panic attacks and now I’m wondering that it was all due to advancing migraine sxs.

      I have a lot of cognitive issues, such as word finding, confusion, disorientation, feeling dumb.

      I get auras sometimes but not always – zigzag lines and flashes in the corner of my eyes, various size of black spots that are different than floaters. Years ago I had the round bright ring without any other sxs. Doctors ignored it and when I was worried about MS they told me I was a hypochondriac – thus I never got evaluated for this however one brain MRI I managed to get due to ongoing dizziness (likely an early migraine sxs) was clear.

      My GP gave me Sumatriptan – thankfully did not have to take it for months now, although a few days ago I was close to folding. I was prescribed Topomax that I refused when I read about potential serious side effects (blindness). Then she gave my Amytriptiline (sp?) – I haven’t started on this yet because I was hoping maybe there is a more natural way. I’m taking Magnesium, Riboflavin, Omega 3 and got a multivitamin with higher B6 in it. I’m walking every day and use a dawn simulator to help balance serotonin levels and to set my circadian rythm (I had months of insomnia prior to this nightmare). Use candied ginger and peppermint oil to relieve symptoms.

      I ordered a Cefaly – some people say it is not for chronic headaches but I’m going to give it a try before starting Amytriptiline. Since my sxs are not severe, don’t have rebound headaches or allodynia, maybe it will help? My theory is if the trigger threshhold got lowered before the chronic migraine, there must be a way to raise the threshold again…

      I totally understand what you mean when you describe your feelings about having to face daily sxs. Although my sxs are not considered severe, they are always here. I’ve been on sick leave due to the frozen shoulder but worry that I won’t be able to manage work due to the chronic migraine sxs. Mentally, this is very tough and I had some dark thoughts myself… But I won’t let these thoughts take the best of me – it is important that I stay positive as this has an effect on serotonin levels or the body’s ability to heal itself. I do belly breathing and meditate.

      I don’t seem to have food triggers, although I stopped drinking alcohol, eating chocolates, etc. The main triggers seem to be emotional upset, stress, problems in my neck/shoulders, body temperature and blood pressure changes.

      This got rather long, but I wanted to join others to show you’re not alone and that we are all taking steps and fight to help us get better. I’m glad you are still optimistic – I’ll join you as well. 🙂

      Reply Created with Sketch. reply
  • By Schmee

    Just FYI, one of the first docs I saw (and its been confirmed by every doc since) has warned me off taking any pain reliever everyday. The first one was sure that I was getting rebound headaches. Unfortunately, I was not cured when I went off naproxen everyday. But I do notice that taking advil or naproxen for more than two or three days in a row will guarentee that I end up with a double whopper of a headache. I don’t know that I have any good advice for someone who is already taking advil so frequently, except to reassure you that if you get off it and get past the back-lash point, you are likely to be in not-worse-than-now pain on a daily basis. Also, since I stopped taking naproxen every day, I’ve noticed that I can take it on extra-bad days and it does better, especially if I take it with some extra coffee.

    Reply Created with Sketch. reply
  • By Schmee

    Just popping back here to let you know about a treatment I’ve been trying that has been working! I’ve been taking Indomethacin. Its an old school NSAID, most often used for gout.

    I’m still concerned about habituation and rebound issues if I use it as regularly as prescribed. Its also very hard on your stomach and can damage your kidneys. So its not a perfect solution, but even using it only about every three days or so, its made a significant difference in my functioning.

    Reply Created with Sketch. reply
  • By Katie M. Golden Moderator

    Schmee,
    I’ve been on indomethacin as well and you’re right it is very hard on your stomach, but so are OTC NSAIDS. I’m glad that you’ve been getting relief from it. Just be aware if you feel it isn’t working and let your doctor know as the dosing could be changed.
    Best wishes!
    -Katie
    MIgraine.com Moderator

    Reply Created with Sketch. reply
  • By Anonymous

    You sound a lot like me. I had chronic migraine with aura in my teens but had gotten them down to a handful a year until I developed vertigo due to Meniere’s disease. My migraines got much worse, became daily and I had migraine associated vertigo as well as Meniere’s disease.

    I am now down to a couple of migraines a week, and my auras no longer involve ataxia, aphasia, or full blown rotary vertigo so I can drive again. My current treatment regimen is 100mg of Amitriptyline a day and botox done by a headache specialist every three months.

    Reply Created with Sketch. reply