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My husband had a similar onset of headaches...every time he stood up it hurt really bad. LONG story short, it was determined that he was leaking cerebral-spinal fluid (CSF) from his head through his mastoid bone. Once the mastoid was surgically corrected the headaches ceased. It is the same thing women often get after epidurals, but the leak is in the lower back area. Just a thought!
I have suffered with "Ocular Migraines" (with out pain) since I was in my early 20's. Several months ago (April), I had an episode where I saw a flash (like someone had taken my picture using a flash). Most of the time in the past, it usually cleared up in 20 minutes or so. This has remained and has caused a blind spot in my left eye. I have gone to my eye doctor who said it was caused by an "Ocular Migraine". The Doctor also said it was rare. But he had no answers as to rather it would be pernament or if it would get worse.Has anyone heard of or experenced this? Pam Matherly
Dear Pam:
I can't adequately answer your specific question regarding your long term blind spot, but I have included here a topic sheet from the NHF that further explains this diagnosis. And I am curious if you still have the blind spot, too.
"Ocular migraine is a term which may have different meanings to different physicians. Many times migraineurs will have just the visual warning signs or aura of their migraine attack without the headache. This occurs more frequently as one gets older and can be a frightening phenomenon. This is also referred to as acephalgic migraine, or migraine aura without headache.
Some physicians refer to ocular migraine as retinal migraine, where there are repeated attacks of one-sided blind spots or blindness lasting less than an hour and associated with a headache.
It is important to rule out eye disease or a disorder of the blood vessels leading to the eye as possible causes."
Susan
Hi. I have been suffering migraines since I was 11. I'm now 22, and they've only gotten worse and more frequent. Sometimes they're so unbearable, that I contemplate suicide. I get them so bad I will lose the ability to speak correctly, my words will slurr. I know I am getting a migraine when I get an aura of what looks like little glittery floating circles and zig-zags and I lose sight in one eye, usually the left. About 30 minutes later I have a numd hand, and tingling sensations, and the worst pain one could ever imagine.. I have been to the hospital because of being doubled over in pain to the point that I passed out in the hospital parking lot. They overdosed me on morphine the first time, and I was sick for 3 months. I was on IMITREX for a while, but a new neurologist confirmed I was having complicated migraines and was not to take IMITREX for those kinds of migraines. I was on a preventive med. NEURONTIN for 3 years, and it up and stopped working for me. I have been addicted to anything and everything you name it: Excedrin, Aleve, Advil, Percocet, Oxycodon,everything. I can take advil and aleve if I get a migraine but that's it. I take the aleve b/c it works most of the time, but if I had it 3 times in the week I hafta switch to advil. Sometimes, I think I'm going to go crazy. When I have a migraine for a week straight and nothings making it go away and my fiance says he knows I have a bad headache. I wanna scream b/c it's more than he can ever know. It's torture. I can't do a lot of things with my friends, and I can't eat or drink a lot of trigger things. ( such as things with monosodium glutamate and raspberries, pomegranite, etc.) I'm relieved to have read other people feel the same way, but this life sucks a lot of the time. I should be happy planning a wedding and instead I'm lying in bed suffering.
Hi Dee:
Thanks for your comments--if you haven't already, please take a moment and visit our Web site, www.headaches.org and see if there is any addtional information that the NHF can assist you with. Also, if you feel that you would like me to link you with several e-mail pen pals, I would be happy to do that. You will find more information about that program on our site as well, it is under Programs and Education. Just send me the information requested, and I will be happy to look for individuals with similar headache diagnosis, and in your age range, too that you can can correspond with whenever time for support and new ideas!
I too suffer (although much less frequently as I age) with migraine with aura! Thanks, Susan
I have been suffering from Migrain headaches since 1974 when I was involved in a auto accident - hit from behind by a drunk driver and my head hit the windshield. No seat belts or restraints of any kind back then in automobiles. The headaches are more frequent now and last longer.
Hi Peg:
First, I am sorry for the delay in responding to your comments.
Sounds like things are not necessarily improving for you, but instead worsening. As a result, I would like to offer you a few resources that are located on our Web site, www.headaches.org. You can review our topic sheets, which are located under the index of Headache Education. There you will find more information on Post Traumatic headaches, and diet intervention, and numerous other topics. Additionally, if your headaches are now increasing as you mentioned, and your accident was 34 years ago it might be time to change meds, or even seek a second opinion. If this seems like a reasonable idea, on the NHF's home page you'll find our Physician Finder by state.
Finally if you would like to contact us for an e-mail pen pal for some additional support, you will find that information also on our Web site and under NHF Programs.
Thanks!
My daughter, 14 years old, has been getting what I think are menstraul migraines for over a year now they last from 3-5 days in the same two week period each month and she becomes sick, dizzy, weak, sleeps a lot pupils very dilated and usually ends up with a whopping headache but not always. Because she doesn't always get a headache but has a hyper sleep affect the neurologist I took her to thought she had a sleep disorder not migraine. She's had a sleep study, MRI, and EEG all normal. His suggestion was a med that would wake her up from her hyper sleep state. Her pediatrician put her on birth control pills that seemed to help for a few months but then stopped working. She wants her to see another neurologist. We have also been seeing a naturopath, she has been off birth control pills for three months so a hormone panel could be run. She is also having saliva samples from an 18 hour time period analyzed for adrenal hormones. As soon as I get the results from the labs I will take her to another neurologist but don't want to get sent down the wrong path again. This is really affecting her schooling. She is a freshman in highschool this year and they are very strict about homework and she is only allowed 12 absences per year. Any suggestions out there???? We live in Washington State about 25 miles east of Seattle.
Hi Shirley--my apologies for not responding sooner. I want to share with you the link to our Web site, www.headaches.org. Our Home Page offers a Physician Finder, by state, and includes doctors who specifically address headache care. Additionally, under topic sheets (which you will find under the heading of Headache Education) there are numerous resources, including diet, what biofeedback is, hormonal infuences, and myriad items that might also be helpful to you, as well as your daughter. Alternatives are certainly an option and can provide viable support to other (mainstream) approaches, which are also included in the topic sheet list. When your time permits, please visit our site.
Thanks, Susan
Hi! This is from Carol in Omaha, NE. I have had migraines for several years - I'd say over 30 years at minimum, probably closer to 40 years(!). My migraines were pretty well controlled the past few years by Topamax, then last spring, my neurologist added Depakote as another preventitive. I'd been taking Relpax for relief of the migraines as well. I hadn't had to take the Relpax very often, as over the counter meds seemed to be helping until the headaches seemed to start coming daily, and then they were increasingly getting worse with more intense pain as well. I got renewed prescriptions for Relpax and also some samples. This did nothing for me as I continued to get the headaches and soon the Relpax wasn't working to get rid of the headaches! They were unbearable, and I was getting sick to my stomach and started seeing flashing lights which I didn't know were auras. I went home a bit early from work on a Monday, missed work on Tuesday with the migraine and on Wednesday morning, I woke up with the same bad headache and terrible white lights and then colored lights and then I couldn't see - it was like gray areas covering my eyes. At first I could see some shadows of things - enough to get my purse together & make a phone call to a neighbor across the street & then walk over there so I could get a ride to the hospital, but by the time I got there I was almost completely blind.. it was like dark shadows only. We got to the hospital and I was immediately seen by the doctors - I do not remember any of this - as I was pretty well confused by this time - I guess I was able to answer their questions, thankfully! They did testing on me and then I had a grand mal seizure and then more tests & finally determined I had PRES Syndome. I don't remember anything from admission & woke up sometime Thursday night from the coma they induced - they put me on a respirator as well - this could have been fatal for me - and I was told it was all because of a combination of my migranes and high blood pressure which had been normal or below normal for the past year!!! This scared the wits out of me!!
I talk to my siblings and they don't know what to say to me because they have never had headaches like mine - they admit. Also, coworkers say "I'm glad I don't have those!", and then I wonder if they even believe me when I have the headaches - which I should not have to think those thoughts, either!! I don't need those doubts to crowd my mind and give me stress to bring on more headaches!!
Thank you for your time! This looks like a good place and I think I will be back!
Carol
Hi Carol:
First, for those of you who don't know what PRES Syndrome is, it is Posterior Reversible Encephalopathy Syndrome. Headache and visual loss are reported primary symptoms of PRES, but there are a variety of others, too. Suffice it to say that everything you experienced Carol, was certainly frightening for you, but now knowing how to manage it is the positive outcome!
Finally, I am not sure that you are aware but there is a Headache Education and Support Group meeting in Omaha on the first Tuesday of the month. It is ready made support from others who do clearly understand a headache. You can call 1-402-758-2910 and ask for De Etta Wancewicz, RN for more information on the December 4th meeting.
You know, I've had migraines since I was 15 and I've been on every medicaion on the market. Prevention, emergency, narcotic, you name it I've done it. I've tried eastern and western medicine. And finally thought a few years ago that we'd found the answer - occipital neuralgia - implant an ONS and low and behold every thing would get better. And the neuralgia got better but I still had the migraines and they have consistently been getting worse. Conventional treatments don't help. I'm allergic to the immitrex, DHE, reglan and composine and when I try to refuse narcotics at the ER that's all they'll give me - they won't call my doctor to get her plan. But I'm in there more often than not lately. I'm almost 40. My life is consigned to going to work, driving home and sleeping. Trying to fit in some exercise if it's not a migraine day I have no friends outside of work because they've all left. I get them and they last between 10-30 days. And yes, I have to work with them don't ask me how because I can't explain it myself except to say you learn to live with things that you don't have a choice about. But I am finally at my breaking point. I've always thought that nothing could truly push me over the edge but the headaches I've been having consistently back to back recently and not being able to show anyone or let on that I'm having a migraine (the true meaning of grin and bear it) have finally done it for me. I just don't know how much more of this I can take. And I can't tell my parents, my family, or what friends I do have left and my therapist wants to explore the feelings involved - geez - there are no feelings involved - it's pain and wanting the pain to end once and for all. After 25 years why can't someone find a cure for us?!? Their finding cures for cancer and other horrible diseases every day. But it seems that no one take Migraine seriously and I just don't know how much more I can take. I'm so sorry to vent but I have no one else to talk to who will understand.
my story is so similar, I am 47 yrs old and as I read your post having a disappointing 1st appointment at John Hopkins. I thought I was going to Oz and getting to meet the wizard, and it has so far been nothing like their web site promised. I am in the medical field, but the rules allow me only to post as one fellow suffer to another. I have researched protocols and treatments from all over the US and even other countries. A few things that have worked for me for a while and then just stopped, I was the test patient, and then my pain specialist continued to use them on other migraine patients with great success. #1 is IV magnesium, I had to get weekly infusion, some people are mag. wasters, to build up my levels. oral mag, did not work for me, but it can not be measured in a regular blood test, only 1% circulates in your blood. I don't think forum allows to much more dtails , but google magnesium sulfate Iv infusion and chronic daily migraines, there is tons of info. #2 was a sphenganglion block, putting lidocaine into your nose and it drips back to a huge plexis of nerves, no side effects, and some dr.s let their patients do themselves at home. This was magic for 2-3 months, there is also a needle approach. #3 FDA just approved botox for migraines, I have had some good months when taking a preventative too(topamax) and I think cymbalta< antidepressant with pain relief use. My heart is breaking for the isolation you expressed. i am currently bedridden and unable to work, but I have 2 friends who have stuck by me and a supportive spouse of 26yrs. i too feel like my husband, kids, family and career have been robbed of many precious years and i am outraged at the care available> I as well took the holistic route and ran up 10,000 on a credit card, insurance isn't holistic friendly. I used extremely reputable practioners in various holistic fields, but nothing worked, but several friends were treated successfully. One final thought, as migraine patients we often are offered diagnostic testing. Terri roberts has some great articles on things you need to make sure have been ruled out, they are helping me currently fight this battle with my John hopkins pseudo work up. One is a diagnostic spinal tap, you can have low pressure, high pressure, or incorrect make up of the various components. i hope i have stayed within forum guidelines, as I want this info to find its way to you. If a forum moderator has any problems with my post, could they please provide thgis poster with the information in the approved format. I would be happy to stay in touch, i feel it does take a village and we must all help each other. Best wishes, may we all find relief in the near future.
My partner suffers from what has been diagnosed a an intractable headache plus migraines. She also has a cochlear implant. She is in bed approximately 5 out of 7 days (either part or all). She has been on all of the known drugs I believe, at one time or another but she has no or little relief. I was wondering if you have any information on headaches and cochlear implants?
Thanks Em
Dear EM,
Clearly this is a subject that can't be answered in a few words. Understanding that there is a great deal of information available doesn't mean that it all makes sense. But I came across a poster that was done in 9/03 and it offered a conclusion that seems to recognize that the placement of a cochlear implant has a vareity of side-effects. I am referring to the following post.
Archives of Physical Medicine and Rehabilitation
Volume 84, Issue 9 , Page E23, September 2003:
Chronic headaches after unilateral cochlear implant placement: a case report.
Conclusion: Cochlear implants are now widely use in the pediatric and adult population with sensorineural hearing loss. It was only in 1984 that the US Food and Drug Administration approved the implants for use in adults. The reported surgical complications are wound infection and breakdown (most common), along with less frequent facial paralysis, cerebrospinal leak, meningitis, and device-related complications. Clinicians should be aware that headache symptoms in these patients can be related to cochlear implant placement.
If you can contact me directly at the NHF I can share more information with you by way of resources that might be able to improve her outcome.
Recently, I began having cluster migraines and these are accompanied by uneven pupils. One of my pupils get very big and the other shrinks to a pin size. Then sometimes after a few hours, they switch sides. This is happening more and more frequently. I saw an Urgent Care doctor because I thought I was having a stroke, but he said it's just migraines. He gave me Maxalt but I cannot take it because the pharmacist (and drug insert pamphlet) say it could have a potentially fatal interaction with my anti-depressant. I'm not sure what to do next. I don't have health insurance, so I need to make a careful decision about how to proceed so I don't end up not having enough to go to the right kind of doctor. Any advice? Thanks!
daynise,
-:¦:-•:*'""*:•.-:¦:-•*Welcome to MyMigraineConnection!*•-:¦:-•:*'""*:•.-:¦:-
One of the most important things is to get an accurate diagnosis. To simplify matters and make it easier for people to get information and treatment, doctors usually go by the gold standard for diagnosis, the International Headache Society's International Classification of Headache Disorders, 2nd Edition (ICHD-II). Under ICHD-II, there is no diagnosis of "cluster Migraine." You can read more about the importance of a correct diagnosis in The Type of Migraine Does Matter.
As for taking Maxalt with an antidepressant, reread the information you received. It doesn't say that they can't be taken together. It says that they need to be used with caution. This is because of a condition called serotonin syndrome, whch is very rare. For more on this, see Antidepressants, Triptans, and Serotonin Syndrome.
It's rather difficult to tell you what kind of doctor to see because I don't know anything about the doctors where you live. Some family doctors do fairly well treating Migraines, as do some neurologists. Still, neither family doctors nor neurologists are Migraine specialists. Do you have a family doctor? If so, you might want to start with a call to his or her office.
Hope this helps.
Welcome again,
Teri
No one diagnosed me with "cluster migraines." I was simply using the term "cluster" to describe the frequency of my headaches. I've either had a "cluster" of migraines or one month long migraine. But be assured, they are all migraines and yes, a doctor has diagnosed me with them.
Also, the risk of death as an interaction between SSRIs and Maxalt are stated on the package insert under "Warnings". I'm going to go ahead and trust my pharmacist and the package insert over an article written on your website.
Thanks.
Just wanted to be sure on the type of Migraines. Some people have been given the diagnosis of "cluster Migrines." There are several forms of Migraines. A diagnosis simply of Migraine isn't complete. Migraine without aura is the most common.
We don't want you to take any information on our site over the advice of medical professionals. That's definitely not our role. I gave you the link so you could have more information to discuss with a doctor and upon which to make your decision, and that information was reviewed by Dr. John Claude Krusz, a Migraine specialist, before I posted it. I just want you to realize that our information is checked before posting. We Migraineurs have a tough enough time. The warnings about serotonin syndrome are just that, warnings. They're not contraindications; there's a big difference.
Hopefully, you'll be able to choose and see a doctor about your Migraines soon.
Best wishes,
Teri
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I really am finding this forum a great place and learning about resources I never new were available. I may really have to consider joining something like this.... there are so many things, and difficult situations that no one can tell you how to deal with - like losing friends because they just don't understand and get their feeling hurt because you cancel plans and you are just not who THEY want you to be .... thanks for the share I will probably find this helpful at some point - just learning my way around here!
Shannon Terry
Dear Shannon:
Thanks for visiting the HealthCentral site and this blog too! If you are seeking any other specific information that you haven't been able to find during your various Web searches, or here at HealthCentral, please stop by our Web site too, www.headaches.org.
Don't hesitate to let me know if there is anything you need to assist you further with managing your condition.
Susan
Dear Shannon- I understand - as I have had to cancel plans also because I got one of my "ugly" headaches - I am blessed that I have a husband who is very supportive and understanding..............no one knows the degree of pain you experience unless you have the headaches too - I finally have had enough and am finally accessing the web pages looking for some kind of help as the medication I take is very expensive. There must be something that can give us some instant relief without breaking the bank to do so.
Peg