Desperate for help
Gseven posted:
Ok, here's a book of a question.
I've suffered from migraines since childhood. I wasn't properly diagnosed with it until I was in my 20's and was prescribed medication that seemed to treat it appropriately. When I got pregnant with my first child the intensity, duration, and side symptoms got severely worse. To make a long story short, I have two children now and I'm 32. The past 8 years I've suffered intensely with these headaches, as has my little family. It puts me in bed for weeks and i'm unsure if it's one headache or multiple in one period. I have photophobia and blurred vision, hyper-sensitive sound and smell and even being touched hurts. I get weak and even walking far wipes me out. It makes me get the shakes and shiver visibly. My skin gets splotchy and just.. odd looking, but I've always been quite fair skinned and just assumed it was because of that. Those are just a few of the symptoms I get.
The past few years I've had huge amounts of memory loss that I don't think I'll ever recover. I don't remember from around age 12 to 19 with just a few exceptions. I've forgotten almost every thing I learned about math. I don't remember school friends, what classes I took, how I did, and what I did. It's not limited to far past though, I'm constantly reminded of words/actions just days or hours before and it's now gotten me into some fairly serious trouble. I cant ever concentrate and its a fight every single time I have to try. I'll lose what I was going to say and just sit in a stupor (so I've been told) trying hard to retrieve it. I'll misspell, mispronounce, mix up letters and sometimes even add numbers where letters should have been for no obvious reason.. Just writing this took me half a day. I am better articulating if it's typed out though for some reason.
I now (after years of research trying to figure out what was wrong) understand that I was misdiagnosed for too long. The doctor I was with since I was a child up until months ago simply did not treat my symptoms seriously, often telling me to suck it up, and it can't be that bad, etc. When the memory loss started, he just threw it out the window, didn't even really try to help. I've seen a neurologist, had neck/head scans but nothing showed up.
So.. I've been diagnosed with chronic daily migraines in addition to the really,
really severe ones I get that keep me practically catatonic. There's also been
psych diagnoses that are often times linked with migraine. Now my question is
this.. Is that amount of substantial memory loss normal? Duration, auras, intensity, diagnoses.. I don't know where to ask for help anymore and this is getting worse. I read also that Hughes syndrome also has sister-symptoms and am worried about that but I don't know who to go to that will believe what I'm telling them. Hughes scares me, because so many of my symptoms are the same.
After over 25 years with the same doctor, I've found myself without one simply
because he thought I was faking my symptoms to get pain killers, but what pain help I received was barely noticeable, again I don't know if thats because of the issue in the brain with pain receptors and such..
I'm just 100% lost, in trouble, and scared. I have 2 young children and my husband is deployed. I can't afford to sacrifice this much time with my children. Any response is appreciated.
[br>
I've suffered from migraines since childhood. I wasn't properly diagnosed with it until I was in my 20's and was prescribed medication that seemed to treat it appropriately. When I got pregnant with my first child the intensity, duration, and side symptoms got severely worse. To make a long story short, I have two children now and I'm 32. The past 8 years I've suffered intensely with these headaches, as has my little family. It puts me in bed for weeks and i'm unsure if it's one headache or multiple in one period. I have photophobia and blurred vision, hyper-sensitive sound and smell and even being touched hurts. I get weak and even walking far wipes me out. It makes me get the shakes and shiver visibly. My skin gets splotchy and just.. odd looking, but I've always been quite fair skinned and just assumed it was because of that. Those are just a few of the symptoms I get.
The past few years I've had huge amounts of memory loss that I don't think I'll ever recover. I don't remember from around age 12 to 19 with just a few exceptions. I've forgotten almost every thing I learned about math. I don't remember school friends, what classes I took, how I did, and what I did. It's not limited to far past though, I'm constantly reminded of words/actions just days or hours before and it's now gotten me into some fairly serious trouble. I cant ever concentrate and its a fight every single time I have to try. I'll lose what I was going to say and just sit in a stupor (so I've been told) trying hard to retrieve it. I'll misspell, mispronounce, mix up letters and sometimes even add numbers where letters should have been for no obvious reason.. Just writing this took me half a day. I am better articulating if it's typed out though for some reason.
I now (after years of research trying to figure out what was wrong) understand that I was misdiagnosed for too long. The doctor I was with since I was a child up until months ago simply did not treat my symptoms seriously, often telling me to suck it up, and it can't be that bad, etc. When the memory loss started, he just threw it out the window, didn't even really try to help. I've seen a neurologist, had neck/head scans but nothing showed up.
So.. I've been diagnosed with chronic daily migraines in addition to the really,
really severe ones I get that keep me practically catatonic. There's also been
psych diagnoses that are often times linked with migraine. Now my question is
this.. Is that amount of substantial memory loss normal? Duration, auras, intensity, diagnoses.. I don't know where to ask for help anymore and this is getting worse. I read also that Hughes syndrome also has sister-symptoms and am worried about that but I don't know who to go to that will believe what I'm telling them. Hughes scares me, because so many of my symptoms are the same.
After over 25 years with the same doctor, I've found myself without one simply
because he thought I was faking my symptoms to get pain killers, but what pain help I received was barely noticeable, again I don't know if thats because of the issue in the brain with pain receptors and such..
I'm just 100% lost, in trouble, and scared. I have 2 young children and my husband is deployed. I can't afford to sacrifice this much time with my children. Any response is appreciated.
[br>
4 Replies |Watch This Discussion | Report This| Share this:Desperate for helpOk, here's a book of a question.<br /><br />I've suffered from migraines since childhood. I wasn't properly diagnosed with it until I was in my 20's and was prescribed medication that seemed to treat it appropriately. When I got pregnant with my first child the intensity, duration, and side symptoms got severely worse. To make a long story short, I have two children now and I'm 32. The past 8 years I've suffered intensely with these headaches, as has my little family. It puts me in bed for weeks and i'm unsure if it's one headache or multiple in one period. I have photophobia and blurred vision, hyper-sensitive sound and smell and even being touched hurts. I get weak and even walking far wipes me out. It makes me get the shakes and shiver visibly. My skin gets splotchy and just.. odd looking, but I've always been quite fair skinned and just assumed it was because of that. Those are just a few of the symptoms I get.<br /><br />The past few years I've had huge amounts of memory loss that I don't think I'll ever recover. I don't remember from around age 12 to 19 with just a few exceptions. I've forgotten almost every thing I learned about math. I don't remember school friends, what classes I took, how I did, and what I did. It's not limited to far past though, I'm constantly reminded of words/actions just days or hours before and it's now gotten me into some fairly serious trouble. I cant ever concentrate and its a fight every single time I have to try. I'll lose what I was going to say and just sit in a stupor (so I've been told) trying hard to retrieve it. I'll misspell, mispronounce, mix up letters and sometimes even add numbers where letters should have been for no obvious reason.. Just writing this took me half a day. I am better articulating if it's typed out though for some reason.<br /><br />I now (after years of research trying to figure out what was wrong) understand that I was misdiagnosed for too long. The doctor I was with since I was a child up until months ago simply did not treat my symptoms seriously, often telling me to suck it up, and it can't be that bad, etc. When the memory loss started, he just threw it out the window, didn't even really try to help. I've seen a neurologist, had neck/head scans but nothing showed up.<br /><br />So.. I've been diagnosed with chronic daily migraines in addition to the really,<br />really severe ones I get that keep me practically catatonic. There's also been<br />psych diagnoses that are often times linked with migraine. Now my question is<br />this.. Is that amount of substantial memory loss normal? Duration, auras, intensity, diagnoses.. I don't know where to ask for help anymore and this is getting worse. I read also that Hughes syndrome also has sister-symptoms and am worried about that but I don't know who to go to that will believe what I'm telling them. Hughes scares me, because so many of my symptoms are the same.<br /><br />After over 25 years with the same doctor, I've found myself without one simply<br />because he thought I was faking my symptoms to get pain killers, but what pain help I received was barely noticeable, again I don't know if thats because of the issue in the brain with pain receptors and such..<br /><br />I'm just 100% lost, in trouble, and scared. I have 2 young children and my husband is deployed. I can't afford to sacrifice this much time with my children. Any response is appreciated.<br />[br>
allie_bf responded:
Whew, where to start? A couple of points. First, for all your detailed description of symptoms, there's interestingly not a correspondingly detailed list of treatments and medications, and therein may lie your problem. While chronic migraines (especially w/aura) may cause confusion, there is also a good chance that your medications may be making your confusion worse. Certain drugs, like Topamax, are particularly known for this; another group would be narcotics, more known for sedation, but they can also cause some confusion in some people. If drug side effects can be ruled out, it might not hurt to see a neuropsychologist. Momentary or short term lapses, especially related to word-finding, or challenging tasks before and during a migraine are semi-expected, but the degree of confusion that you are having seems beyond the norm, and should be investigated further. Second, even severe, chronic migraines should not keep you in bed for weeks. Migraines do tend to come in clusters, and it can certainly be hard to tell when one ends, and another begins, and that may go on for days, but there should be intervals of semi-reasonable functioning off and on throughout that time. That there is not for you suggests that depression may be a major factor as well, especially given your current family history. As a migraineur, and a former military spouse, I well know how stress can aggravate pain, making what would normally be very uncomfortable now unbearable. Since you do have small children who depend on you, you are right to be concerned. Perhaps it is just as well that you are in a position where it is time to find a new physician. Sometimes it is helpful to get another perspective when you have longstanding problems that haven't improved at all over time. If you could find a multi-specialty clinic where the doctors, presumably, could work together on your concerns that would be even better. Please know that we wish the best for you, and stay active on the site with updates.
Report This| Share this:Desperate for helpWhew, where to start? A couple of points. First, for all your detailed description of symptoms, there's interestingly not a correspondingly detailed list of treatments and medications, and therein may lie your problem. While chronic migraines (especially w/aura) may cause confusion, there is also a good chance that your medications may be making your confusion worse. Certain drugs, like Topamax, are particularly known for this; another group would be narcotics, more known for sedation, but they can also cause some confusion in some people. If drug side effects can be ruled out, it might not hurt to see a neuropsychologist. Momentary or short term lapses, especially related to word-finding, or challenging tasks before and during a migraine are semi-expected, but the degree of confusion that you are having seems beyond the norm, and should be investigated further. Second, even severe, chronic migraines should not keep you in bed for weeks. Migraines do tend to come in clusters, and it can certainly be hard to tell when one ends, and another begins, and that may go on for days, but there should be intervals of semi-reasonable functioning off and on throughout that time. That there is not for you suggests that depression may be a major factor as well, especially given your current family history. As a migraineur, and a former military spouse, I well know how stress can aggravate pain, making what would normally be very uncomfortable now unbearable. Since you do have small children who depend on you, you are right to be concerned. Perhaps it is just as well that you are in a position where it is time to find a new physician. Sometimes it is helpful to get another perspective when you have longstanding problems that haven't improved at all over time. If you could find a multi-specialty clinic where the doctors, presumably, could work together on your concerns that would be even better. Please know that we wish the best for you, and stay active on the site with updates.
So sorry to hear about your migraines, memory loss and other mental functioning. You definately need to see another doctor, preferably a neurologist for further analysis and treatment.
You say nothing about what treatment you are being given other than pain killers. You may not be aware of the fact that taking any pain reliever 3x a week or more will cause non-stop rebound migraines. There are many other treatments available such as daily preventative meds, nerve block or Botox injections, etc. If your doctor never prescribed any of these to you, they were very ignorant.
It is possible to have severe migraines daily and enough to put you in bed for weeks. I am one of those people. Just cruising through these medical blogs you will find a lot of people are severely sick for many years. Fortunately I have had a lot of different treatments that have helped me a lot, but even so, waiting for my Botox injections and the time for them to take effect this last time, made me bedridden for most of 3 weeks.
As far as your memory loss, I did look up Hughes syndrome and saw many symptoms that you do not mention. Nevertheless, if you do have it, you need adequate anti-coagulant treatment for it to prevent a stroke. So that needs to be diagnosed if you do have it. See another doctor--esp. a neurologist. Even though you have seen a neurologist, the quality of them can vary. See another one and be more demanding that they rule out Hughes.
The memory loss you describe does sound excessive for a migraine. Your memory loss and your mental functioning problems do seem like those of someone who has already had a stroke which you may not have realized that you had one. You say that the scans showed nothing, but I wonder if you may have had a TIA or several of them. Or would an MRI show anything else. If anyone else reads this and knows the answer, please let this person know. Again, see another neurologist.
I had a major stroke which began with severe migraines unlike any I had had before. Then several weeks later, I had a full stroke which I woke up with paralysis on one side, which went away after I went to sleep again. I could have missed it. After the stroke, I had extreme difficulty coming up with the simplest of words, sometimes even now, years after my stroke, I will say the opposite of what I mean or will come up with the wrong words. I have difficulty with spelling. There are all sorts of variations of mental deficits after a stroke.
Please do see a neurologist. And if the doctor only wants to give you pain killers which my first neurologist did with me, see another one who is not an ignorant doctor.
I wish you the very best. Please let me know how your next doctor's appt, goes.
Sara
You say nothing about what treatment you are being given other than pain killers. You may not be aware of the fact that taking any pain reliever 3x a week or more will cause non-stop rebound migraines. There are many other treatments available such as daily preventative meds, nerve block or Botox injections, etc. If your doctor never prescribed any of these to you, they were very ignorant.
It is possible to have severe migraines daily and enough to put you in bed for weeks. I am one of those people. Just cruising through these medical blogs you will find a lot of people are severely sick for many years. Fortunately I have had a lot of different treatments that have helped me a lot, but even so, waiting for my Botox injections and the time for them to take effect this last time, made me bedridden for most of 3 weeks.
As far as your memory loss, I did look up Hughes syndrome and saw many symptoms that you do not mention. Nevertheless, if you do have it, you need adequate anti-coagulant treatment for it to prevent a stroke. So that needs to be diagnosed if you do have it. See another doctor--esp. a neurologist. Even though you have seen a neurologist, the quality of them can vary. See another one and be more demanding that they rule out Hughes.
The memory loss you describe does sound excessive for a migraine. Your memory loss and your mental functioning problems do seem like those of someone who has already had a stroke which you may not have realized that you had one. You say that the scans showed nothing, but I wonder if you may have had a TIA or several of them. Or would an MRI show anything else. If anyone else reads this and knows the answer, please let this person know. Again, see another neurologist.
I had a major stroke which began with severe migraines unlike any I had had before. Then several weeks later, I had a full stroke which I woke up with paralysis on one side, which went away after I went to sleep again. I could have missed it. After the stroke, I had extreme difficulty coming up with the simplest of words, sometimes even now, years after my stroke, I will say the opposite of what I mean or will come up with the wrong words. I have difficulty with spelling. There are all sorts of variations of mental deficits after a stroke.
Please do see a neurologist. And if the doctor only wants to give you pain killers which my first neurologist did with me, see another one who is not an ignorant doctor.
I wish you the very best. Please let me know how your next doctor's appt, goes.
Sara
Report This| Share this:Desperate for helpSo sorry to hear about your migraines, memory loss and other mental functioning. You definately need to see another doctor, preferably a neurologist for further analysis and treatment. <br /> <br />You say nothing about what treatment you are being given other than pain killers. You may not be aware of the fact that taking any pain reliever 3x a week or more will cause non-stop rebound migraines. There are many other treatments available such as daily preventative meds, nerve block or Botox injections, etc. If your doctor never prescribed any of these to you, they were very ignorant. <br /> <br />It is possible to have severe migraines daily and enough to put you in bed for weeks. I am one of those people. Just cruising through these medical blogs you will find a lot of people are severely sick for many years. Fortunately I have had a lot of different treatments that have helped me a lot, but even so, waiting for my Botox injections and the time for them to take effect this last time, made me bedridden for most of 3 weeks. <br /> <br />As far as your memory loss, I did look up Hughes syndrome and saw many symptoms that you do not mention. Nevertheless, if you do have it, you need adequate anti-coagulant treatment for it to prevent a stroke. So that needs to be diagnosed if you do have it. See another doctor--esp. a neurologist. Even though you have seen a neurologist, the quality of them can vary. See another one and be more demanding that they rule out Hughes.<br /> <br />The memory loss you describe does sound excessive for a migraine. Your memory loss and your mental functioning problems do seem like those of someone who has already had a stroke which you may not have realized that you had one. You say that the scans showed nothing, but I wonder if you may have had a TIA or several of them. Or would an MRI show anything else. If anyone else reads this and knows the answer, please let this person know. Again, see another neurologist. <br /> <br />I had a major stroke which began with severe migraines unlike any I had had before. Then several weeks later, I had a full stroke which I woke up with paralysis on one side, which went away after I went to sleep again. I could have missed it. After the stroke, I had extreme difficulty coming up with the simplest of words, sometimes even now, years after my stroke, I will say the opposite of what I mean or will come up with the wrong words. I have difficulty with spelling. There are all sorts of variations of mental deficits after a stroke.<br /> <br /><b><u>Please do see a neurologist.</u></b> And if the doctor only wants to give you pain killers which my first neurologist did with me, see another one who is not an ignorant doctor.<br /> <br />I wish you the very best. Please let me know how your next doctor's appt, goes.<br /> <br />Sara
I just saw an answer from the expert doctor on this same website who stated,"By definition a CT scan would be normal when someone has a TIA. If it is abnormal then they have had a stroke."
So you might have had a TIA even though your scans showed normal. There are many, many, people who report on these sites that they have symptoms for a long time after having their TIAs.
So you might have had a TIA even though your scans showed normal. There are many, many, people who report on these sites that they have symptoms for a long time after having their TIAs.
Report This| Share this:Desperate for helpI just saw an answer from the expert doctor on this same website who stated,"By definition a CT scan would be normal when someone has a TIA. If it is abnormal then they have had a stroke."<br /> <br />So you might have had a TIA even though your scans showed normal. There are many, many, people who report on these sites that they have symptoms for a long time after having their TIAs.
carpetcrawler5 responded:
DEFINITLY get a better dr.
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