Hi: This is the first online group I've joined. I am really desperate for help with my daughter's migraines (head and abdominal). I could really use emotional support and suggestions for preventatives and treatments. She is up to 3 migraines per week and is struggling in school and sports because of them. This is no way to live. She is on topomax and another preventative - nothing has worked. Imitrex works with time and sleep. Please help, and thanks.
My daughter had very frequent migraines and stomach pains. She was prescribed RX antacid medication twice daily and numerous migraine medications. This went on for years with many specialists visits. When she got pregnant with her first child, she was so sick, she was hospitalized twice during her pregnancy and finally delivery was induced a month early because she was so sick. Her husband got a vasectomy so she wouldn't go through a future pregnancy and they have and are adopting future children. After eventually seeing an allergist which did food testing in addition to pollen, etc. she found she was allergic to soy and tomatoes. She removed those from her diet and has to look at ALL ingredients on everything. (You find soy is in almost everything.)
Since making the diet changes, she has not had ANY migraines, and is totally off all antacid medication. She has been migraine free for several years now!
I recommend your daughter go to an allergist who believes and does food allergy testing. I hope this helps your daughter too!
If you think your daughter has allergies that are a health issue separate from Migraine, by all means, check with an allergist.
That said, allergies and Migraine triggers are NOT the same at all. When someone is allergic to something that is also a Migraine trigger, there is no evidence that it's anything more than coincidence. I've known many people to go through expensive and uncomfortable allergy testing hoping it would reveal something about their Migraine triggers, but it didn't.
I did the allergy testing for reasons other than Migraine. Did the skin tests and the blood tests. The testing revealed quite a few allergies of varying severity. Not a one of them is a Migraine trigger for me, but some things that are NOT allergies ARE Migraine triggers for me.
Here's another thought I'll share on this. Some brilliant people have devoted their entire careers to Migraine -- what causes the disease, what happens in our brains and bodies during a Migraine, how to prevent Migraines, and how to treat them when we get them. If allergy testing were a valuable tool, they'd have dsicovered and revealed that by now.
Teri
Dear Janet,
I am a teenager who has had migraines all my life. It started out just being abdominal migraines (stomach pain, and lots of it) but eventually turned into the regular classic migraines. I understand how they can affect school, and everything else. I tried Topamax, and i'd advise against it, unless she needs it for things other than migraines. It messed me up so bad. But my best advise is to not give up, research and find out everything you can, and know that you will find something that will help. I've had the same migraine going on for a year now, non-stop and it has affected everything. School, friends, life, even family, but i keep hanging in and keep believing that something will help eventually. So i know how she's feeling, and my mom probably knows what you're going through. There's tons of different options.
Hang in there,
MigraineSufferer
In the past i have tried imitrex, maxalt, and other triptans. Also i looked for triggers in either food, or scheduling. I can't have much chocolate, or caffine, and when i would have sleepovers, or go skating all night, that would affect me. I also learned that, as i matured, and came closer to my menstrual cycle, my migraines were coming once to twice a month. So you could talk to your doctor about birth control, just to try. It could also be related to stress. Big tests or family. You may also see about mri's and cat scans, for serious problems, but those are rare. I am still looking for my "cure", i will always have migraines, but i can try to control them. Keep trying and keep your hope up. Hope this helps some, and if you need any thing else just ask and i'll tell you everything i can.
sincerly,
Migrainesufferer
Janet,
I see where your daughter is on topamax and another preventive so obviously she is under a doctor's care. I've read several of your posts but haven't seen what kind of doctor your doctor is seeing. I'm wondering if it is time for you to seek out a new doctor for your daughter? I have been desperate with my migraines as well and I know how awful that is. I don't know how hard it would be if it were one of my children going through this and not me. And I know from what you've shared the abdominal migraines are especially difficult on top of the already very difficult migraines. For me, it dawned on me that it was time to seek out a new doctor when I realized I was considering flying to another state to be admitted to a migraine clinic if that was an option. I didn't know if that was an option or not, but I knew I needed to do something!! Have you tried seeking out specialiasts in your state? I'm assuming you've already done this, but I urge you to maybe try again....The doctor I saw for almost 3 years was considered a migraine specialist, but the migraine specialist I am seeing now is approaching my migraines in a totally different manner. You might just mention in your post what state you are located in and someone here might could help you?? Just my thoughts. I hope you can soon find some help for your daughter. You are at a good place for the emotional support. I believe you will find that here. I think a lot of us here know what desperate feels like and that is certainly not a good place to be! My best to you as you seek help for your daughter.
Thank you so much - I really think I need to approach this from a holistic perspective. My daughter has a lot of anxiety (gets it from her grandmother, I think...) and is just very tightly wound (and always has been). We can't really find a trigger other than stress (and some strong smells). It is hard to organize a teenager's life for them, but I am thinking that yoga, meditation, massage, and maybe acupuncture (she doesn't want to do this, though) might help. I don't know.
Janet, your daughter sounds like me -- I'm not 53 but have gone through 2 suicidal periods. You say your daughter doesn't seem to have triggers -- I didn't either until I realized it takes two triggers -- ANY two. I can't control the weather (HUGE trigger for me), but I can control food and environment sorta -- so I do. I have had anxiety and depression associated with my migraines -- have you considered/explored the possibility of a tricyclic anti-depressant -- or is she in that teenage period where they hate to give anti-depressants -- if so, I'd keep on keepin' on; make sure she keeps a diary if she can; there are lots of migraine weekly diaries on line that I use and then supplement (there's never enough room) -- she may have a journal anyway and she write down what she hate, if school went poorly and if she had problems with friends -- look for nexi to her headaches. Your holistic approach is a good idea but none of those things alone will solve things in my experience, she'll have to find a lifestyle that works. God bless you guys! Mary
Thank you for sharing. I think the lifestyle that works for you is actually a holistic approach - watching for all the things that can trigger a migraine and keeping the stress down. We are just trying to figure out triggers now. I think weather may be a big factor. My friend's daughter always seems to have migraines when my daughter does, and she think weather is a big trigger. But we don't really have much weather here...
Janet, the things that if I have 2 of include weather -- ANY barometric drops, alcohol -- I even gave up beer for the yeast(!) at a huge sacrifice! Pork -- US processes it with too many nitrates; frozen food -- most preservatives have bad sulfates; diet sodas; irregular sleep -- even if it means failing a test she MUST get sleep! CAREFUL exercise -- raising my blood pressure (which is abnormally low) can cause a headache -- walking works; avoiding scents, loud noises and flashing lights -- my son will not drive with me if he has recently shaved because his after shave (not a cologne) can upset me, there is a flashing red light at a nearby intersection that I avoid looking at and I've had to give up all concerts (except Bruce Springsteen -- he was our first date in 1978); I'm learning to give up people who stress me -- I could not have done that as a teen -- and by the way, kudos to you, my mother always told me my headaches were psycho-somatic until my sister-in-law had a stroke! The doctors are pretty sure I have something wrong with my brain -- it doesn't show up on MRIs but I have depression, migraines and insomnia (not necessarily in that order and recent research is finding connections -- of course it's easy to be depressed when you have to lie on the bathroom floor next to the toilet in the dark just praying God will deliver you from the pain! My depression is completely chemical (I have a great life and am happy!) and we are finding those symptoms are exacerbated by the headaches. Oh, here's something else, I went to a menopause specialist who put me on an estrogen patch, lower dosage than birth control, just to keep estrogen levels pretty much even, estrogen drops (at ovulation AND menstruation) have been shown to be big triggers. Yoga and breathing and walking and lots of hydration....
My apologies, Janet....I had you confused with another member here who has a daughter with migraines / abdominal migraines....so when you read my comment you may be a bit confused....I'm so sorry!
But, my comment is still the same for you. My only other advice would be to not give up. Hope is so very important!! And, I know topamax works for some people, but that is one drug that I will NOT take again. It did not work again, and it made me feel so stupid! The first neurologist I saw put me on topamax and I think he thought I would like it b/c it would possibly make me lose wt. Well, I quickly realized that wt. loss was not worth making me feel so stupid!! I was in such a mental fog it was awful !!! It was so bad I had trouble writing my name (literally) as I was signing my name on a check at the doctor's office. That's just my 2 cents on topamax.
Again, my best to you. And don't give up!!! Keep searching for answers. Your daughter is very fortunate to have such a caring mother.
Missy
Janet,
-:¦:-•:*'""*:•.-:¦:-•*Welcome to MyMigraineConnection!*•-:¦:-•:*'""*:•.-:¦:-
I'm sorry you need to be here but very glad you found us. Let me start by saying that your daughter does not have to live like this. It can take time and patience, but effective treatment and management can be achieved.
There's a lot that goes into Migraine management. One of the first things is learning about Migraine and understanding it better. Migraine is a genetic nurological disease. For most people, that means a few Migraines a year. Others, like your daughter, are more severely affected by the disease. We understand that here. Most of the people here fall into that second category, with Migraines that are frequent and severe enough that we need to actively work with our doctors toward better Migraine management.
Do you and your daughter know what any of her triggers are? Trigger identification and management is an important part of Migraine management and preventing Migraines. She may have some triggers that she can avoid, thus preventing Migraines brought on by those triggers. When working to identify triggers one of the best tools is a good Migraine diary. You can read more about this and download a free diary workbook in our article Your Migraine and Headache Diary. Some of us have food triggers, some of us don't. The best way to determine if she does is to do an elimination diet for a while. For more information and a workbook on this, see Managing Migraine - Migraine Trigger Foods.
As for stress being a trigger, there's still some controversy, but I hate to see anyone accept that stress is a trigger without at least trying to see if they encounter triggers during stressful times that they either don't encounter at other times or they're only triggers when the body is stressed. The International Headache Society has removed stress from their list of Migraine triggers and put it on their list of exacerbating factors -- things that make us more susceptible to our triggers. I'd have sworn stress was a trigger for me until I kept a very detailed diary for a few months. More information in Is Stress a Migraine Trigger?. I hope you'll thoroughly investigate this as I think we do ourselves a real disservice by thinking stress is a trigger for us and not looking closely for other triggers during stressful times.
How long has your daughter been taking Topamax? Because it's one of the newest medications found to be effective for Migraine prevention, it's one of the most frequently prescribed, but it doesn't work for everyone. Of course, nothing works for everyone. There are now over 100 medications and supplements that can be used for Migraine and headache prevention. The frustration of trying to find what works for us can make it seem as if we've tried it all, but with so many possible preventives, it's literally impossible to have tried them all. See Migraine preventive medications - too many options to give up! for more information.
If her doctor isn't able to help, it may well be time to consult a Migraine and headache specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.
Thanks for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.
We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.
Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information on the main page of our site, http://www.MyMigraineConnection.com. Under the Find, Manage, and Connect tabs at the top of each page, you'll find a wealth of information - educational articles, tips, quizzes, workbooks, support and advocacy information, and more.
Do you have questions about Migraine? There are three ways to get answers - through our Ask the Clinician column, in our community Question and Answer Section, or through our forum. Just go to our Migraine Answers page HERE.
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Janet, please don't hesitate to let us know how we can help? I'd love it if you can keep us updated on how your daughter is doing. With a daughter in-law and three grandchildren with Migraines, I can imagine how difficult this is for you. We'd rather have those Migraines ourselves than see our beloved children suffer.
Welcome again,
MyMigraineConnection Lead Expert
Teri: Wow. You are like an angel sent from heaven. I am glad I found this site. TRIGGERS: I have looked and looked for triggers. We had my daughter track her period and that did not seem to relate. So, while hormones may be a contributing factor, they do not seem to be the trigger.
The pattern of her migraines almost argues against any trigger, since they seem to be so regularly spaced. I think she had a few abdominal migraines when she was little - it is the only explanation for the abdominal pain, nausea and throwing up that was not passed to anyone else in the family. But this round really started right at the beginning of her freshman year. First, it was every month (I thought is related to her period then). Then it went to every two weeks (maybe period and ovulation, but it did not seem to occur on those dates) and then it went to once a week - almost like clockwork. Then up to twice a week, and recently, three times a week - always about 2 or 3 days apart. They last - even with Imitrex - the med that has worked the best - anywhere from 3 to 8 hours. There goes an entire day of school.
One trigger that we do know of is certain strong detergent or perfumy smells. Her friend's jacket set her off twice (she was wearing the jacket one day and carrying the jacket another day). Her grandmother is very sensitive to smells and can't stand jasmine and gardenia - she gets headaches. This same grandmother says she once had migraines a long time ago, but claims not to get them now. She does have "spells" though - I don't know exactly what she means, but she goes to bed for a day or two with a bad stomach (could this actually be an abdominal migraine??? I wonder)
Stress does seem to be a trigger. When my daughter has had a traumatic thing happen (and at age 16 there is a lot of trauma!) she seems to develop a migraine either the next day or the day after.
I don't see any pattern with food at all. And nobody in the family has any food allergies, except her sister has a food sensitivity to corn dogs or any fried cornmeal product (and throws up).Nobody in the family, that we know of, has allergies to other stuff. But, who knows???
MEDICATIONS: It seems like she's tried every treatment for the migraine itself and they work well the first time, and then don't really work after that (except to put her to sleep - which is a relief, but not an effective treatment). She's tried Maxalt, Zomig, Relpax, Imitrex and Sumatriptan Succinate (generic Imitrex). They all work once, and don't work after that. I have heard that the nasal spray is worth trying, but the neurologist does not have any samples and it costs almost a thousand dollars, which our insurance won't cover.
The worst part of her migraines is the nausea. She has tried Trimethobenzamide (Tigan), Promethazine (Phenergan) and Ondansetron (Zofran). None really work.
My daughter started on Topomax last November (we did not want to go this route, but felt it was necessary and the doctors were pushing it) - at 25 mig. By this spring, she was up to 125 mg, with bad cognitive side effects. And she's struggling in school anyway. She / we decided to go back down on the Topomax, and she is now at 75 mg - obviously not very effective, and she wants to get off of it altogether (fine with me).
In March, she started on Nortriptyline - a substitute for Pamelor - a low dose anti-depressant that is supposed to prevent migraines. She had a reasonably good three weeks with only one migraine, and we thought we'd get through the month (we were so hopeful) and then she had three in one week.
I just picked up some samples of Namenda, which I hear is effective, and with fewer side effects, but my daughter has had enough and refuses to take any more pills. She understands she has to come off of the Topomax and Nortriptyline slowly - but says after that she is DONE.
She and I are at the end of our respective ropes. I'll take any advice I can get. Thank you.
Hi Janet, I'm so sorry that your daughter is suffering with migraines. My four children (3 girls and a boy) all suffer from migraines as I do. I wonder if it is hereditary. My grandmother suffered from migraines. I started having bad headaches in about the third grade and have had them since. The one thing you need to be careful of is blood pressure rising to stroke level with a migraine. This has happened to me several times. I have been taking 2.5 mg Zomig for my migraines for the past few years, but it needs to be taken at the first sign of a migraine. Last year I went through a period of having the migraines about 5 to 6 times a week and my doctor sent me to a pain management specialist because I was taking too much Zomig. The pain management doctor gave me two injections in the back of my head because I was having the cervical headaches as well. I can happily say that I went 3 months without the first sign of a headache and if I start having them more than 2 or 3 times a week I will definetey go back to him. One thing that really triggers migraines for me is CHANGE IN SLEEP PATTERN. It is so important to get a good nights sleep and go to bed around the same time every night and get up around the same time each morning. Once I retired my migraines got so much better. I was working the midnight shift and running errands or picking up grandchildren from school during the day and my sleep hygiene was terrible. I slept in two shifts just trying to get enough sleep. A drop in the barometric pressure is a trigger as well as some foods. My doctor gave me a headache diet and you wouldn't believe all the foods that can trigger a migraine. Pizza, yogurt, yeast bread, cold cuts, nuts, and hard cheeses are just a few. Ginger Ale is good for the nausea. I wish you the very best and I am praying for your daughte.
Sandra: Thank you so much for your thoughtful and helpful reply. First, the foods you list are ones my daughter eats all the time. So I think I will be very aware of foods from now on. I will ask about a migraine diet or food list - although what I keep hearing is that everyone has different triggers. Let me ask you - do the bad foods trigger a migraine within the first hour or two of consumption? We can't seem to find any triggers (other than one smell related thing). It would help to know how quickly the trigger works. Second, the stroke thing really scares me. Is it related to the medication you were taking or the migraine itself. We are starting to think that my daughter just does not respond to Triptans. No matter how quickly she takes one at the onset, she is destined to have anywhere from 4 to 8 hours of agony. One thing we just tried (but it was so expensive... and our insurance company would not cover it) is Migranol - the spray. It is not a triptan, and it seemed to work on her headache very well. What she really needs is something to stop the extreme nausea. She does sip on ginger ale when she can, but 4 to 8 hours of nausea and vomiting is what really keeps her home in bed. Any ideas??? Thank you again.
Hi, Janet,
My name is Sue, I have a 13 year old daughter who suffered terribly with what was originally diagnosed as Intractable Migraines. She spent 2 years taking every imaginable preventitive medicine and then medicine to take at the onsite of a migraine, as well as many medications because of the side effects from the different types of migraine meds. At one point, I had a 9 year girl, who was taking 9-11 different types of medicine, which basically caused her to be a zombie. School was no longer an option, her teachers began home schooling her because her migraines were so dibilitating that she couldn't get out of bed, couldn't function. Period. My, once happy, joyful, lil girl, was now drugged, still in pain, didn't do her art anymore, didn't play with her friends, no video games, or t.v., she literally was just breathing it seemed. Her neurologist is amazing, but he and his collegues were completely stumped. This went on from 7 1/2 to 10years old. It was horrible for her and her father and I felt like we were dying inside.
About 2 months after her 10th birthday, her neurologist wanted to do a spinal tap! Initially, I was 100% against that!! I didn't want anyone sticking a giant needle in my baby's back. It took him some time to convince me to allow him to do it. He finally explained that he had a hunch, he told me that my daughter didn't fit the "normal" profile, but it was worth a try, plus doing a spinal tap would rule out a whole lot of other crap. He told me to go home and research Pseudo Tumor Cerebri, (also called Intercranial Hypertension), (I was very hands on trying to find a diagnosis myself at that point, LOL). I researched and went on different forums, I stayed on the computer all night, well into the next morning. As soon as the dr's office opened, I was on the phone agreeing to the spinal tap. He put her in for the next day for her tap. He diagnosed her within 30 seconds of putting the needle in her back. My daughter, miraculously, had instant relief. (She was awake, but in la la land) as soon as he took the needle out of her back, she said, "Mom, my headache is gone!! My headache is gone!!" All we could do was cry, our lil' girl finally had some relief!!
She was in alot of pain from the tap, but for 9 days, for the first time in over 2 years, she was migraine free!! When her migraine came back, it came back worse than ever, the new meds werent' helping. So back in for another tap. This time she wasn't in as much pain, but the relief from the headache only lasted 4 days. So the next week, back in for her 3rd and final tap. Her neurologist suggested that he use a larger needle, so that her spinal fluid,(once you research this condition, you will understand about the excessive spinal fluid), would drain for a little longer, sorry to say, that backfired, while it did giver her complete relief from her migraine, her spinal fluid drained so fast she became so dehydrated, that less than 24 hrs later she was back in the hospital, and now a neuro-surgeon was brought in. That was a Thursday, by Friday a.m., it had been decided that she needed a shunt, (she has a L/P shunt, it goes, on her insides, from her belly button to the bottom of her spine), Monday morning, she had surgery to have her shunt put in. That was 3 years ago, this past April.
I am so happy to be able to say, she hasn't had a migraine since!!!! She has had a few normal headaches, but absolutely no migraines. I couldn't have been more thankful.
Now I have to tell you, when you look this condition up, my daughter didn't fit any of the profile, she wasn't over weight, didn't have vision changes, didn't hit puberty early, nothing. Her doctor literally went with his gut and followed a hunch! If not, we may very well still be going through this.
I'm sorry this was so long, but I wanted to give you a full picture of what we were going through. I hope this helps. We are sending good thoughts to you and your daughter. As physically painful as this is for your daughter, as a mom, I completely understand the pain your heart is in watching her go through this.
Good luck and God Bless,
~Sue
Dear Mom: Wow - you have been through a lot. It is heartbreaking, isn't it? I am so glad you found the solution. My daughter is much less bothered by headaches than nausea. We have actually found a medicine that helps her headaches at the time - Migranol spray. It is very effective for her. The big issue is controlling the nausea. I wonder if this is really the same as what your daughter had. In any event, I will keep researching. I hope for a cure too.
Sue,
-:¦:-•:*'""*:•.-:¦:-•*Welcome to MyMigraineConnection!*•-:¦:-•:*'""*:•.-:¦:-
Thank you SO much for sharing your experience.
I have IIH too. Fortunately, after my doctor drew off enough fluid to put my pressure in normal range and prescribed a medication to keep it there, it worked; so I was able to avoid a shunt.
Great job researching and getting help for your daughter!
Welcome again,
Teri
Janet,
We, too, used Migranol. That was actually the 1 medication out of ALL the medication that actually helped. Reglan worked well for the stomach upset, we did try Zofram in the beginning, however, I only let them use it once in the hospital because, I personally have not had good results from that, (I have problems with anesthia and they give that to me before surgeries and it gives me a monster migraine) so I didn't want to take the chance with that.
I am suffering terriblely with migraines myself and have been seeing a neurologist, who is very much aware of my daughters condition, and all she seems to want to do is try different mood stabilizers, which I'm told is used to treat pain as well, I have an adverse reaction to them and refuse to try even 1 more. I am now in the process of finding a new neurologist.
Also, recently,(the last 8-10 wks), my youngerest daughter, 5 yrs old, started having terrible migraines, we went to neuro this week and he started her on a preventitive medicine and skipped over the ct scan and ordered an MRI that she will have to be sedated for. Since he has already done this w/ my oldest daughter, he has experience with the conditions in my family, so hopefully, she won't go through as many years of pain as my oldest daughter did. I'm really nervous about started her, at such a young age, on medicine already, however, I am 100% confident in her neurologist. That being said, watching another one of my children have to go through this and knowing what I go through ever day with my own migraines well, it's painful on the heart. She will be 6 next month and she wakes with a headache, goes to bed with one, the last 4 wks or so, she has been getting a headache 4-5 x's a wk. Truly breaks a mothers heart.
I'm glad the Migrainol is working for your daughter and I hope you find something that helps with the nausea soon. We tried flat cola and saltines or oyster crackers before she even got out of bed, weither she had nausea or not. You know, to try and catch it before it started. Give that a try and see if that helps, Also, along with the Migrainol at the onsite of the migraine, we used caffiene, Mt. Dew, coffee, pepsi, lattes w/ a shot of expresso even. I know that sounds silly to be loading a kid up with caffiene like that, but you have no idea how much that helped her. Please keep us up to date and let us know how she is doing and how you are coping. I'm here if you need to vent.
All the best,
~Sue
Also, regarding food triggers, that is enough to drive you insane. We kept a food diary for about a year and the only thing that made even the smallest difference was certain cheeses, like on pizza, and it wasn't all the time, but every so often she would eat a slice and her migraine would go from, let say a 5 to a 7, with in an hour or so of eating it. Finally, we gave up on the diary, it drove me crazy and wasn't helping. I dont' know if that helps you, but i thought i would include that as well
~Sue
I am so sorry to hear about your little one. I think my younger daughter's migraines started out as abdominal migraines as young as age 2. My older daughter started getting abdominal migraines around age 8 and they completely went away when she went through puberty. So, maybe there is hope.
My younger daughter's migraines have improved a little lately (only one a week now instead of two...) and she is now taking Namenda (the alzheimers med). A friend of mine has a daughter on Namenda, and this girl is doing very well.
I am also thinking about acupuncture (but my daughter does not want to do it) and homeopathy. I am that desperate.
Thank you for sharing.
Janet
I haven't checked in a while but the last time I did, only 25,000 - 30,000 people in the United States and Canada have this condition. It seems to be more common in girls/women, but males do get it. Since it's not a well known condition, they really don't seem to know alot about it. Different people have different symptoms. The only sure fire way to diagnose it is to do a spinal tap.
My best suggestions, since you are at your wits end like I was, is research the hell out of it. Go on every possible site and read and keep doing what your doing, join forums, ask questions, (and lots of them)I used to keep a running list of questions in my purse to ask on a forum or the neurologist. Push and push your doctors, get second opinions if necessary. Be aggressive! I was lucky with my daughter, like I said, her neurologist went with his gut.
Does your daughter see a neurologist? You probably mentioned it, but I missed it. If you does, call him and ask, why, why he never mentioned this condition, but only after you have researched, this way you have your questions in hand!
~Sue
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Hi Janet, I just had a really bad migraine this week and by mistake ended up at a different Dr than Id booked into. This Dr specialised in severe pain. Ive never had a Dr that has helped me in 40 years.... this Dr used an infra red heat lamp on the back of my head and within 20 mins most of the migraine pain was gone it was amazing! Im going back to him on Monday. Good Luck