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Difficulty concentrating

  • By blest

    Yes I do and have been suffering with chronic migraine and hemiplegic migraine for most of my life. Been on SS disability for almost 10 years now..Now my 12 yr old son is also suffering. He’s been getting them since he was about 6. Then started getting Alice in Wonderland Symptoms. But now they have gotten much worse with the onset of puberty. He has missed lot of school already and has decided to try and stay in school and try to work thru the pain so at least he is there and not missing so much. But he has trouble concentrating. Especially when he’s supposed to be doing research and writing a report in school. The teacher sees him straring into space and thinks he should be tested for ADD. I tried to explain to her that pain is distracting and makes it hard to learn and process things. He also just started Topomax and I told her (and not my son) that one of the side effects could be short term memory loss and to please let me know if she notices this. She wants me to sign a release form so the school can talk directly to his dr. I feel like she doesn’t beleive me. Is there any where I can find some printed info to show her about how migraine and difficulty concentrating?

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  • By Ellen Schnakenberg

    Blest – Is your son seeing a headache specialist? That is probably the very best place to start. Not only will a headache specialist have access to research that can back up what you’re telling the school, but can help you in dealing with them if necessary.

    It’s possible that the teacher isn’t taking you seriously, and may have another agenda as well. Allowing them to talk to your doctor without you being present may not be the best thing you could do. Instead, why don’t you ask them to provide you with a list of questions they have that you could present to your son’s doctor for him to address in writing. Doctors are used to providing this service, and a physician’s letter to your son’s school should be sufficient even for an IEP if you find the need to go that far.

    Be sure and check your school’s written policy for rules and regulations re: parental and schools rights and responsibilities in the case of this type of special circumstance. Follow them to the letter, and this usually includes notifying the school in writing of your intent to seek help for your son. Some parents like myself, find that the school is less than enthusiastic re: helping your child, necessitating finding a child advocate to come and help facilitate the process. These are available in most states and are usually free. They know the regulations in your state and how to work within the system to get the results you need. Their job is to help the child.

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  • By blest

    Thank you, Ellen. Yes, he does see a pediatric migraine specialist. Your suggestions are very helpful. I will call him today.

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  • By Gregory Gauthier

    I agree with Ellen, A letter from your doctor is sufficient, they have no right to speak to your doctor, nor should they. This is why the HIPPA rules exist (patient’s right to privacy act). Greg

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  • By Anonymous

    I have a lot of trouble concentrating because I get extreme nausea and vomiting from my headaches. The throbbing pain is terrible and the auras take almost an hour to go away and keep reoccurring. I recently had this checked out with a CAT scan because I had migraines that would last several days and come right back and intensify for about 2 weeks straight. I now have one again. I am new to the site and would love to hear advice from anyone.

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  • By 44_Maggnum

    I have always had difficulty concentrating..especially in school. But because of my severe migraines and focus difficulty my current employer decided to let me go and they did not understand that I was suffering from migraines. I told them too and the human resources said “take a pill and youll be fine”. Im like really. People these days are so unsympathetic and have no idea what we migraineurs go through. 🙁

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  • By Sharon M

    Most commonly headaches sneak up on me gradually, but sometimes, I will find myself unable to make a simple decision or spaced out, and at least sometimes then I realize that I have a migraine coming on. I also frequently experience a sense of having tunnel vision at those times. My visual field is not actually limited but I somehow have that experience.

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  • By Emma81

    I have always suffered with concentration during migraine. Unfortunately this can mean it takes 10 mins to answer a simple question such as “what are you doing tomorrow”. I feel like my mind is a filing system but I have to look for everything in the dark. I have found that non-sufferers take this as ignorance or stupidity and refuse to believe that I just cannot find the right words. I have found that closing my eyes and concentrating on taking slow deep breaths with a 4-in 4-out count for a few moments helps to clear things up a little.

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  • By rilniski

    I had difficulty concentrating when I was on at least 75 mg of Topamax. It was strange at work. I’d start one task only to space out and forget what I was doing only to start another. It was rather strange to me and not a feeling I was used to. Needless to say I had to go on a lower dose of 25 mg of Topamax. I also have days where I feel like I’m in a fog and just feel half out of it.

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  • By lhicks10

    I have had a very difficult time concentrating since I first started getting migraines. I have some concentration problems during migraines, but the bigger problem is the inability to concentrate after the migraine. It’s like being in a fog. The best comparison I can think of is that it feels like that dull “out of it” sensation you get as you’re coming out of anesthesia. I can’t focus, forget things easily, and have a hard time coming up with words. This doesn’t seem to ever really go away. Before migraines I was an extremely sharp thinker with an amazing memory, but unfortunately now things are very different.

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  • By Ellen Schnakenberg

    lhicks10 – I’m sorry you’re experiencing this. It could be a part of postdrome which can create what a lot of people refer to as a *Migraine Hangover*. You can read about postdrome and Migraine phases here: https://migraine.com/blog/what-are-the-stages-of-a-migraine-attack/

    Research was done a while back that showed that cognition isn’t affected in Migraine patients beyond their attacks. However, a lot of patients would disagree with that. Here are some things to consider:

    Are you taking other medicines, including preventives? These can result in brain fog.

    Do you have other comorbid conditions? Sometimes the brain fog isn’t related to Migraine at all.

    Do you have problems keeping food down during an attack? Sometimes patients can suffer generalized weakness, dehydration and other problems related to nausea and vomiting and even malabsorption issues, that can create a constant *haze*

    Please talk to your doctor about this issue so a reason can be found and treated. Nobody wants to live their life in a constant fog.

    Here is a post about brain fog that might be helpful: https://migraine.com/blog/migraine-symptoms-brain-fog/

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  • By lhicks10

    Thank you, Ellen. I’ve been/am being checked for many comorbid disorders but all have come back negative so far. I’m also not on any preventative medication at the moment. I’ve been on a few medications that have worsened the fog, but it’s been awhile since I was on one of those.

    The problem I have is that I have very little time in between migraines to begin with. I’m lucky if I can go 12 hours without 6 or higher pain levels, therefore I don’t get much time to recover and see if the fog will dissipate in time.

    My doctors are aware of the fog and we discuss it at all my appointments. I see a wide range of specialists, and they work as a team around me to try to figure out my situation.

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  • By lhicks10

    Hi Ellen, sorry for the delay. Yes, I know about medical overuse and/or rebound headaches. I haven’t been on any preventatives for over a month and a half now and only taking one abortive – Amerge-no more than twice per week. I also stopped using any and all pain meds like Tylenol, Excedrin, etc about five months ago as well.

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  • By Ellen Schnakenberg

    lhicks10 – I’m SO glad. Are you able to stay away from caffeine too? There are SO many things that can cause MOH problems. It can be so very discouraging. I’ve had to treat my Migraines quite a bit lately, which concerns me too, as caffeine works right now as a “medicine” for me, but if I’m not careful I could end up in trouble. *yikes*

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  • By lhicks10

    Ellen, I’m in the same boat as you with caffeine. It actually helps take the edge of migraines 90% of the time. I’ve gone off of it before, but it seems having it is more positive than negative. I’d love to get it out f my diet for good, but I’m hoping to get my migraines sine what under control first. It’s definitely a fine line!

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  • By merrie

    Hi,
    I am new to this site but not to migraines, I am DESPERATE for relief. I can’t drive, being a passenger is almost as bad, and I can only be on the computer for a few minutes at a time. Working has become very hard and I am worried about losing my job…probably would have already if it were not for my husband covering me(unpaid I might add), thank god we work for same people still. The side effects of the migraines have gotten way worse. Struggling with confusion, trouble speaking, doing simple math. Dizzy, vomiting, constant nausea made worse by motion, balance problems, losing sight in one eye for a while, eye pain.I have one neuro, and just went to see a new one who is supposedly a HA specialist. He wants to try me on topimarate for the third time see if it will work even though it did not before, and since I am already struggling so much with the cognative issues, I really dont want to but he is pretty insistent. Also told me he thinks the cognative issues are just because I am “depressed from having so many migraines”. I really need to get a handle on these things. I dont even have a good resue med yet, have tried four triptans with crappy results and the extream pressure feeling in my chest, neck and jaw with all four so far. I am willing to try anything, just need some relief. I am mostly just venting, but welcome suggestions. Also, two actual questions…1- has anyone else had all these side effects from their migraines? Is it all just one big fat aura? And does anyone else feel lots more nauseous if someone tries to give them a massage- with a normal headache that would help, but now when my husband tries to massage my neck it makes me extreamly nauseated- worse than pre-massage. Obviously we stopped doing that lol. Anyway glad there are people to talk to about this b/c I am at the end of my proverbial rope. I forgot to mention that I am having probably 20+ migraines a month now so that is why I am so frustrated, and they started to get way worse after I a hyterectomy with ovaries removed and I am on HRT because I was way unstable without it.

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  • By Ellen Schnakenberg

    merrie – I am so sorry to see your story here. It’s a familiar one however.

    Here are some links that I think will be helpful for you re: your questions:

    Phases of Migraine: https://migraine.com/blog/what-are-the-stages-of-a-migraine-attack/

    Central sensitization and allodynia: https://migraine.com/blog/migraine-allodynia-and-central-sensitization/

    Where to find a Migraine and headache specialist: https://migraine.com/blog/looking-for-a-migraine-specialist/

    Here is a really extensive forum thread re: hormonal changes and Migraine, which includes much info on hysterectomy options and Migraine which might be helpful: https://migraine.com/groups/users/forum/topic/hormonal-changes-in-women/

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  • By merrie

    Thanks for the links! I had read most of them but not the one about central sensitization. It explained the neck thing for sure. The good/bad news is my new dr is on the list of HA specialist in two of the links to help find one. That is good I guess, but I honestly wasnt super happy with him, and he is the only one in Maine. I am reluctant to follow his directives b/c I feel like he didnt really listen to me with regard to all the confusion symptoms, and he seems to be very reliant on topamax for preventative-he told me that most of his HA patients take it, and didnt listen when I said I have already tried it more than once and did not work. I am going to follow thru with what he wants bc I feel like I dont have a choice. I am going to find a GYN that focuses on menopausal hormone issues because that is definitely an issue for me right now. I was wondering if you know of any triptans that are less likely to cause the jaw being screwed shut chest neck shoulder pressure? It is very uncomfortable and so far all the triptans I have tried do it to me. And they dont resolve the migraine. I really want to find something that works. Also, did I read the article correctly that once you have the allodynia triptans dont work as well? Or only if you dont take them in time. Right now all I have for migrained is Fioricet, which I dont take very often b/c I dont want rebound HA and it doesn’t really work anyway. This means I am just incapacitated a lot more. Anyway thannks again for your reply.
    Meredith
    ps- the triptans I have tried are imitrex, maxalt, relpax, and one other that I cant remember-it was the one my insurance said they would pay for
    pss- the new triptan I am supposed to try is Frova-I was just looking at its info and I have several of the “do not use this if..” qualities…high cholesterol, overwieght (not sure if I am really obese but def overweight), menopausal, strong family history of heart attacks…so now I dont even know if I should try it 🙁

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  • By Nancy Harris Bonk Moderator

    Hi Meredith,

    I hope you don’t mind if I pop in and add a bit to the conversation?

    I know it feels like you’ve tried everything out there for migraine, but don’t lose hope yet. There are lots more options for you. Some other triptans to try in addition to Frova include; Amerge, Axert and Zomig and Treximet which is an NSAID and triptan combined. Have you discussed your concerns about taking Frova with your doctor? If not, have a conversation with him explaining your concerns and whether or not this type of medication is a good choice for you.

    Unfortunately, Fioricet is not a great choice for a migraine rescue medication. We have some information on this topic in an article Ellen just wrote here; https://migraine.com/blog/the-confusion-about-codeineopioids-and-migraine/.

    I’m sure Ellen will be along soon.

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  • By merrie

    Yes, I know about the fioricet but it is the only thing I have to take right now. I am going to try the frova as soon as I can come up with the money to buy it (friday hopefully). I figure if the other triptans did not cause a heart attack this one probably wont either 🙂 Anyway thanks for the list of other options too. I believe I am going to try all the triptans before eliminating them…I just was wondering if there are any that are less likely to make me feel like there is an elephant on my chest, or if maybe there are other non-triptan meds I could try. Well, hopefully I will find something that works soon. Thanks again-
    Merrie

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  • By Ellen Schnakenberg

    merrie – Nancy is right, there are a lot of options. That said, I really understand hanging on tightly to the only thing you have that is helpful. I really, truly hope the Frova is helpful to you.

    If you haven’t yet, please check out our offer center that has everything from prescription coupons to save a few $$ but also information on prescription plans to help you get the prescriptions you need. Here is the link: https://migraine.com/offer-center/

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  • By merrie

    Thanks! Wish I had seen this earlier lol…oh well, if the Frova is helpful I will be able to use it next month (the coupon)and if not, looks like most of the triptans have coupons YAY. I do have insurance, but any of the more modern meds cost at least 50$ a month, and I( am already on several meds so I am very tight on money. Thanks again 🙂

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  • By Nancy Harris Bonk Moderator

    Hi merrie,

    Triptans such as Frova are 5-HT1 agonists (serotonin receptor agonists) and have chest tightness as a potential side effect as you well know :). Did it help abort the migraine? How long did those symptoms last?

    I stopped taking Axert after I experienced similar symptoms. It’s a very personal decision whether to continue taking this medication or not and I wish I had a better answer for you.

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  • By merrie

    Hi
    It did not abort the migraine… however, I was willing to give it another try because at first nothing happened, no side effects or benefits, although the migraine did go away the next afternoon which might have been because of the frova. So it was really weird…I was at work the following evening (15) hours later when I began to experience chest pain. It was a sharp pressure feeling that came and went and seemed to be worse when I exerted myself. I called my husband to let him know and we were both baffled as to why this symptom would occurs so long after taking the med. I pretty much rested the rest of the ninight at work then wenthome and rested more…but I did experience the chest pain for several hours -till about 3:30am. I have never had side effects from a med for that long bf. When I had the neck shoulder chest jaw pain from the other triptans I have tried the side effects occurred pretty quickly, then dissapeared after two hours anemone the mere did not help the migraine. I would like to try the frova again at least once but not if it is going to cause cardiac symptoms. Like I said I am def in the high risk catagory based on my family history and personal health so I don’t know. Anyway guess I will call the Dr tomorrow.

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  • By merrie

    Nothing…I called his office and told the nurse what had gone on and mentioned that I do have several risk factors for heart disease. She said that she didnt think Frova was that long acting (it is, I looked it up on the Frova website), and the Dr would probably want me to try again and take two pills instead of one? She was supposed to call me back with his reply and hasnt yet- they close at five so I dont think I will hear from them today but maybe. And I have a migraine so yay.

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  • By merrie

    So the dr said today when I called today that “triptans are safer than asprin” which I dont believe is true…I think they think I am either making up that I had chest pain, or I am a hypochondriac, which I am not. And if I were, wouldn’t I have experienced the chest pain right away rather than several hours later? When I was not expecting toexperience any side effects? Anyway, now I am supposed to go pick up another triptan called axert. Another 50$ and hopefully I wont have a heart attack! 🙁 very frustrated…This dr saw me once and thinks poorly of me. I cried in the office when he saw me b/c he said he wanted to try the same preventative I have already tried twice and did not work. I am not unstable, just frustrated and I was really hoping this Dr would have some new ideas, not the same idea again. speaking of new ideas, aren’t there any other resue type meds besides either triptans or fioricet?

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  • By Ellen Schnakenberg

    Merrie, I am so sorry hon. This is very frustrating I know. So many of us have been thru similar circumstances. We can’t give medical advice here, but if it were me, I would be SURE to get a cardiac referral from this guy, who seems to have no respect for the potential side effects of medications.

    Something important to kep in mind tho is that not all triptans are created equally. Sumatriptan has the worst side effect profile for cardiovascular problems. Axert might not actually be a bad choice if you need to stick within triptans and your experience with it is likely to be different that with other triptans.

    In the end, a good conversation with a good doctor is going to be key for you.

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  • By merrie

    Hi,
    Tried the axert a while ago, first dose did nothing, next time tried to take the second dose, which did knock me out, good I guess, but cant take while out at work or anything. Right now I am trying a different approach, working on getting hormones balanced to seee if that helps.

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  • By Ellen Schnakenberg

    merrie – Having our bodies balanced (and hormones affect every cell in our bodies!) can be a real key to getting control of our Migraines. Concentration is an issues when hormones are out of whack, so this is probably a very good idea. What does your doctor think?

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  • By merrie

    So haven’t been on in a while. I have adjusted hormones, still having migraines almost daily. Last time I saw the migraine Dr he said “sometimes we just can’t help people, and you might be one of those people ” this after I had seen him a total of two times. Wow, he really put in a lot of time huh? I have gone through all the Triptans with no success. Only tried one more preventative though before Dr gave up on me. Guess I need to try to find Another Dr now. In the mean time I have been struggling with all the cognitive issues plus more that just keep piling up. Now I stutter during migraines, and my memory is worse than ever. I go to get something out of the walk in cooler at work, and instead go into the office (which I need to use my key to enter ) and stand there looking at the walls for several minutes before I realize I am in the wrong room. I call everyone by the wrong name…or just call them pumpkin because I can’t remember their name. I am dropping stuff all the time randomly, and tripping over my own feet. I am so tired and frustrated, and don’t even know where to go from here. Any suggestions welcome.

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  • By Ellen Schnakenberg

    merrie – Although your hormones may be balanced right now, that doesn’t mean your body has necessarily re-adjusted to it’s new “sweet spot”. There is a difference between blood and tissue levels for some hormones, and free and bound levels of others. It’s complicated, but I guess what I’m encouraging you to do is to hang in there a little longer. I have a lot of endocrine issues, and it takes at least 6-8 weeks for my brain to catch up to my hormone levels, and sometimes longer.

    I feel for you and the terrible brain fog. I do want to tell you I kind of think you’re fairly brilliant for coming up with calling everyone Pumpkin, lol. That never occurred to me. I just point and waggle my finger while I stutter all the wrong words and names, while praying the right person has a clue what I’m trying to say, lol. Brain fog is often very slow to lift after re-adjusting hormones. This too may still change with time.

    In the meantime, I agree that it doesn’t sound like your current doctor is digging very deeply yet. You have a choice: you can either have a good discussion and explain that you feel it’s time to look for comorbid conditions or whatever else you think applies, but are not ready to give up. Or, you can give up on this doctor and move on to another one.

    It is very discouraging for our doctors to feel like they’re not making any headway to help us. Doctors are people too (most of them, lol) and we need to remember that they can have an off day just like we can. I’m not making excuses, but I do think it’s a great idea to always try to put ourselves in the shoes of others. Having Migraine and being in pain all the time tends to make most of us forget that pennies are flat, but they still have two sides of equal value.

    I think conversations – frank conversations – are a great place to start. Maybe begin by asking your doctor which conditions have been ruled out as potential comorbidities, exacerbating factors or triggers. Write down that list and then try to pick his brain to see if there is something he might not have thought of before. This is what I had to do, and it probably saved my life. My doctor was a bit ornery and we got into a bit of a tussle over testing me, but in the end, I was right and it did help me. It doesn’t always work that way, but when it does, patients are usually thrilled to have something finally go right and to have something to work on to get even a tiny bit better. 🙂

    ~Ellen

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  • By merrie

    Hi Ellen,
    Thanks for the quick response. The pumpkin idea was my husband’s lol…I don’t think I am capable of figuring that out right now. I am pretty sure the ” brain fog” is more because of the almost constant migraine at this point. I have been on the new estrogen (estrogel) for about 8 weeks. It is a God send. I noticed right away, like within a few days, that I felt more like me. I wasnt crying all the time or angry for no reason 🙂 the emotional side effects are the worst for me when my e is off. I went batty when I first had my hysterectomy bc they wanted me to take nothing ( the Dr)due to other health concerns. I was suicidal and hysterical by week 8. Needless to say, I was prescribed an e patch and gradually adjusted to a good level. It worked for about 1.5 years then all this sudden stopped. I figured out within two months that I needed to find something different and after one failed med found the estrogel. I am only 30 (31soon) and Dec need the e. As far as my super Dr, I don’t think I will be going back. I have not been comfortable with him since meeting him. He does not listen. He is very…I don’t want to insult someone I don’t really know, but let’s just say he spent more time talking about his accomplishments and assuring me he was the best and only ha Dr in new England, than asking questions or letting me tell my story or ask my own questions. We did not talk about triggers, except for him to telle that if it doesn’t give me a migraine within minutes it’s not one. and other than msg I don’t have a clue what mine are. we did not talk about comorbid conditions. He gave me the standard Neuro tests and said yep you have migraines. I went to the intake with a ha journal and a list of questions and goals, and left crying because my cognitive issues were brushed off as not because of migraines but because I was depressed and just could not handle life…well duh, I am having migraines almost daily, wouldn’t you be depressed, or frustrated? Anyway, I don’t think I even want to try to have a candid discussion with him. Ok done venting 🙂 So the bottom line is now I need to find anew Dr in the new England area. If you know of any good ones that won’t give up, cause I’m sure not going to, or any ideas of where to look for one, let me know. I should carry a sign, have migraines, will travel (so long as your driving, hehe). Thanks again for listening.
    Merrie
    Ps I am in maine

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  • By Ellen Schnakenberg

    merrie – From your comments I can make a couple of guesses, and I am so very sorry you’ve had an experience like this. I’m glad you’ve got some spunk and a good attitude and realize that not all docs are created equally. Neither are patients. To complicate things further, not all docs and all patients will make a good team. Obviously this guy is not for you. I will send you a PM here and we can talk more specifically.

    It sounds like you already know this, but cognitive problems are part of Migraine. In fact they can be part of any of the four parts of an attack. If you are Migraining every day as I do myself, I can tell you that it is a rare day that I have any time when I am not in some stage of a Migraine. The result is that I am very often in the middle of brain fog. That said, there can be other exacerbating factors for your Migraines that can also cause brain fog, and it is important to rule those out. In my own case, I also had an ongoing B12 deficiency. Once corrected, my Migraines and brain fog got better. There is permanent damage though, so I’ll never be my old self again, but it was a really important catch. Here is more information on B12 problems and how they interact with Migraine: https://migraine.com/blog/what-can-i-expect-from-b12-testing-part-1/

    As to triggers causing an immediate Migraine – depending upon what the actual trigger is, it can take three days to trigger a Migraine. ‘Nuff said.

    Hang in there. We can chat a little off-board too if you think that might be helpful.

    ((Hugs))

    ~Ellen

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  • By merrie

    Hi again,
    Yep, he was definitely not the right Dr for me. I have had lots of experience with drs, due to having endometriosis which was diagnosed at age 18, and having three subsequent surgeries for it, including a hysterectomy, which I was led to believe was the “cure”. It’s not btw. I have it again now post hysterectomy, and am once again making the trek to the specialist on a frequent basis. Endo is another one of those conditions for which one must bring a lot of their own research to the table in order to get adequate and accurate care. So, anyway, I know how important it is to find a Dr I trust and that has the stamina to stick by me when I react abnormally to all the standard protocols. I am one of the weirdest people I know when it comes to meds,so that complicates things further, and frustrated drs. I get that. It is frustrating for me too. I am allergic or sensitive to so many meds it’s not funny. But I refuse to give up and accept that this is my quality of life permanently. And yes I am like you, and pretty much always have a migraine. I am scared I will have to leave my job (which o just got a promotion at) and go on disability if this continues. I am barely functioning right now. Thanks again for your kindness and info. I had no idea about the b12. Makes you wonder. I have been wondering for a whole now whether migraines can cause brain damage, as that is how I feel, brain damaged 🙁 hopefully it is something that will get better if my migraines lessen in intensity and frequency. Can’t wait to start living again, seems like my life has been one long drs office visit. Oh and my husband is worried I have ms? Found Inc about a correlation between ms and migraines online, and between that and my ridiculous cognitive and clumsy issues wants me to be tested. Can’t say I blame him, but I don’t really want to borrow trouble either. I have enough to think of (or not lol) without making own diagnosis. Anyway have a good night
    Merrie

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  • By Ellen Schnakenberg

    merrie – MS is partly diagnosed with an LP. Am I to understand that you have not yet had a lumbar puncture? https://migraine.com/blog/migraine-test-lumbar-puncture-or-spinal-tap/ An LP is standard protocol when a patient isn’t responding to meds etc. Same with an MRI and CT.

    MS and Migraine can be comorbid, but one doesn’t cause the other. There is a lot of misinformation out there re: brain lesions and Migraine vs MS, so I’m not sure what you’ve heard. Migraineurs sometimes have brain lesions, however these are shown not to affect people as the lesions of MS do.

    There is an interesting correlation with endometriosis and Migraine. https://migraine.com/blog/research-on-migraine-disease-as-a-risk-factor-for-endometriosis/

    For what it’s worth, I now understand a lot of what you’re going through. We have much in common, you and I – a dubious distinction I daresay! I was diagnosed with endo when 18 as well. Had my kids early so I could actually have them. Ended up in surgery a few times, did the Zoladex thing, and eventually a hysterectomy as well. I suffered terribly with my Migraines to try to keep the endo pain down so I could function. The only thing that has helped was eliminating all the estrogen.

    It’s a very thin blade we walk with chronic illness.

    Only because you mentioned clumsiness, I will go on to say that was also a problem I was having. Thankfully, the B12 straightened that right up – it was amazing. I was afraid that might be part of the permanence of the deficiency. It turned out it was my thinking ability and memory that really took the hit where that was concerned.

    These are all vague symptoms. Profound when you’re suffering them, but they really can mean so many different things. Our job is to work together with our doctors to rule out the other most likely culprits before automatically pinning the tail on the Migraine (or any other!) donkey.

    I can’t wait until you get yourself a new doctor <3

    ~Ellen

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  • By merrie

    Ellen-
    No I have never had a lumbar puncture…interesting story that. I actually have never had it suggested to by my drs, but on a recent trip to the er flat out refused to have one and actually left ama. Why? Well, see, they gave me a med I had never had before, composine maybe it’s called? Anyway it was an anti nauseous med. I freaked out. Literally, I Needed to leave that er asap. I Was so anxious and nervous and literally jumping out of my skin, so they came in to say I really needed a lp and ct scan but I was already in the process of removing my own iv, yep that’s right, I was ready to rip that baby right out. I told them I was really feeling much better and just wanted to leave. They basically had to let me go, made me sign an ama doc and that was that. Now I wish I had known what was going on with my body, because I would have stayed and done what they asked. As far as an mri, I did have a normal one back in 09 (or 08′, I can’t remember haha). And my current Dr thought that was satisfactory enough. Of course back them my migraines were episodic, not chronic, so it was really a different situation.
    I am sorry you also struggle with endometriosis, it is an evil and persistent disease. I M glad you were able to have kids. I was not, but have a wonderful step daughter and five nieces/nephews, so I am grateful. r wish I could go without e but I would be CRAZY I guess for me it is really important for my emotional and mental health.
    I know all the cognitive crap could be caused by so many different things. I too can’t wait to find a new Dr. Oh and I would love to chat off board. Always nice to talk with someone who gets where you are coming from,
    Merrie

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  • By Ellen Schnakenberg

    merrie – I’m so sorry you had that experience. It is another of those pesky side effects patients rarely are told about. I had a friend that flipped out, locked herself in the bathroom in the hospital and screamed. She thought she was dieing.

    Maybe you need to start a list of questions for your new doctor!

    ~Ellen

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  • By merrie

    I am definitely going to make a list, both of questions and goals, as well as what I have tried and what I haven’t. I may also print off my posts here to go along with my journal bc sometimes I write in more detail here than my journal.
    Merrie

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  • By Leanne

    HIPPA is the law that governs the medical providers and FERPA is the law that governs educational providers. Often times school employees ask for this information to better serve the child; whether it be through student intervention, 504 of special education. If it’s a matter of you not wanting to provide a blanket consent to release medical information; you can be very specific on the consent to release medical information form by checking the box “other” and specifically stating: “medical information pertaining to migraine headaches (symptoms and manifestations)” excluding all else. By being specific that is all that can be supplied by the doctor, but if more is supplied by the doctor’s office accidently, that is all that can be used by the school district; anything else would need to be shredded. There would be no need for an educational advocate or initiating a hostile relationship with the school staff unnecessarily as it could easily be resolved through positive interaction and communications.

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  • By Ellen Schnakenberg

    lmcoyne,

    This is good information for any parent to be aware of, however, it boils down to the fact that it is the parent’s decision whether to allow this or not, and the circumstances should it be allowed. I was not suggesting that every parent go out and immediately find a child advocate and angrily confront their school. In fact quite the opposite. Advocates don’t work with parents because they have a bone to pick. They do it to help the child in a circumstance where the child needs someone knowledgeable to run interference. Sometimes its interference from the school, other times from the parents. Sometimes both. 🙂 In my experience, no parent is going to go to this trouble without significant reason and often an immense amount of time input as well. Often there has been enough trouble between the parent and school that everyone is already quite frustrated. Advocates work with parents, and act as a mediary when necessary, but only when necessary. This isn’t hostile, but hopefully helps both parties to do what is best for the child. You can think of an advocate as a voice of reason whose sole concern is the child. A teacher or parent whose concern is for the child, will work with whoever is necessary to make sure the student receives what he or she needs to be successful in the classroom, or help find a situation in which the child can be successful in a different learning atmosphere. When parent and school work together for the child’s best interests, everyone benefits.

    ~Ellen

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  • By Aaultaa

    I have difficulty concentrating but over the past year it was brought to my attention that I start writing backwards!? My numbers dates and even words. My neurologist says to keep an eye on it if it gets worse but my coworkers are the ones having to watch me I don’t even realize it it seems normal to me at the time of the migraine. It is very upsetting for me. And I also have chronic back pain that just adds to the problem. Help?!?!?

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  • By Katie M. Golden Moderator

    Aaultaa,
    Writing backwards?! That must be crazy and frustrating, especially at work.
    Are you on Topamax as a preventative? This drug is often cited as making people lose their words, forget normal tasks and generally impair cognition. If you are on Topamax, talk to your doc about it. It’s also possible that it’s another drug causing these symptoms.

    However, it can also be part of your Migraine. Some people see an aura, some experience numbness, and this could be a sign of an impending Migraine for you. Do you notice that it happens before or after a Migraine? Or is it now a daily issue?

    I would definitely talk to your doctor about it.
    -Katie
    Migraine.com Moderator

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