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Complex & Confusional Migraines
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worriednwearywife posted:
I am a wife that is desperately searching for hope. My husband, over a year ago, began losing conciousness and became unresponsive for various amounts of time. Our first visit to the ER was riddled with accusations of drug overdose and attempted suicide. When the drug screen came back with NOTHING in his system (which I knew but they didn't believe...) they just gave him something and sent him home.

Over months of ER visits, DR appointments, blood tests, brain scans, etc. It was determined that he (and the whole family actually along with him) suffered from Confusional Migraines. We tried all different types of medications ranging from seizure meds to blood pressure meds. Propranylol has helped but not enough. My husband, about 4-5 months ago, had a stiuation occur where he had stroke like symptoms (slurred speech, loss of muscle use on one side, confusion, etc.). He was evaluated by his neurologist and was told that he was now dealing with Complex Migraines as well.

I am exhausted. I am at my limit. I don't know what else to do. There has to be something more than medication. I was recommended by a friend to have a "bubble echo" done to see if there is a hole in his heart. Every time he has an "episode" (which is at least once a week) he misses work if he is scheduled that day, I have to miss work so I can take care of our kids while he is "out", and it takes a SEVERE emotional toll on him and me. I want to be able to count on him to be a partner in rearing our family and keeping our home clean but at this point I cannot. It is discouraging and stressful.

I feel like I have been supportive in every way I can. I know there are things he could be doing to improve his health (using his Bi-PAP machine, exercise, etc.) but he doesn't even try.

SUGGESTIONS welcome, criticism not so much........
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allie_bf responded:
Just a couple of thoughts here:
1. If the "whole family" has something, it sounds like environmental factors need to be considered (e.g. did they consider carbon monoxide poisoning, for example.) Even given the strong tendency of migraines to run in the family, it's not all that common for every child to have migraines.
2. Do his doctors know that he is having significant symptoms of depression? Lots of men won't level with their doctors about this, so they end up continuing on medications that can aggravate an already bad situation (e.g. propranolol.)

In the meantime, try to take care of yourself, and protect your job. Even if you are using FMLA to cover your absences from work from a HR point of view, they will add up (certainly in your coworkers' and managers minds.) Is there a neighbor or a relative who could help take care of the children? Are you getting enough exercise and recreation time? It may seem like you can't afford it at a time like this, but you do have to have some way to cope with stress yourself.
 
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carpetcrawler5 replied to allie_bf's response:
allie_bf can you get on this board more often? We appreciate the help. I think I remember you from a few years ago.
 
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carpetcrawler5 responded:
Also give him some lukewarm coffee or chocolate right away when he first starts to get the pain. If it gets really bad and he needs to be somewhere, try taking some Indomethicin. Take it with food, and don't take it often because It's hard on the stomach.
 
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Cherylwilk responded:
I was diagnosed with Complicated Migraines about 4 years ago. My symptoms sound exactly like your husbands. It actually looked like I was having a Stroke. I thought that is what was happening. Could not Move, Speak, and would just go limp. It lasted up to 45 minutes. I call them episodes. I went to 3 neurologists. Finally on who did every test known to man I even had previously done the Sleep Study. The Neuologist that Diagnosed me with Complicated Migraines put me on Depakote ER 1000 mgs a day. It changed my life with in days. Truly changed my life.I had gotten to where I could not go anywhere because I would have an Episode and have to call someone to come get me where ever I was. I would Mumble where I was because like I said I could not speak. But after taking the Depakote I could finally function normally again, One problem I gain A Lot of weight. That is one of the side effects. No Harm Trying it, I know how it feels to feel so helpless. I have tried going off the Med in the 4 years and I do start getting the symptoms right away. I do Not have insurance and have to pay for the med and it is a bit pricey. 110.00 for 30 pills. Hope I helped you worriedwife.
 
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DUKE MEDICINE
Timothy Collins, MD responded:
Sounds like a dificult problem to sort out. Loss of consciousness is very very uncommon with migraines (in fact, is not included in the current diagnostic criteria for migraine). The confusion can be from migraine, but what you describe sounds much more than what we see with migraine.

If he is having these episodes once a week or more, then he could be admitted to an EEG monitoring unit.

The EEG monitoring unit records the brainwaves 24 hours a day for several days to "catch" one of these episodes.

This type of monitoring is done at a hospital (as an inpatient) and is very good at telling if the episodes are seizures, or some sort of non-seizure event.
 
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Cherylwilk replied to Timothy Collins, MD's response:
Thank you Dr. Timothy My daughter says the same thing she is not a doctor but she is a Nurse Practitioner. She has seen my episodes and has said she thinks they are some sort of seizures. I do not have insurance at this time so I am unable to have extensive tests ran, When I went to the hospital in California the Neurologist took MRI but did not do a 24 hour EEG. I have another thing that has been bothering me for several years and have had NO one be able to give me an answer. At night when trying to go to sleep, right before I fall asleep I get these Shocks in my head. That is the only way I can describe the feeling. Like when being shocked by an Electric outlet but it runs through my head. Stuns me for several seconds makes my heart beat out of control. I have been to 3 Neurologists and no answers.
 
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elishiva34 replied to Timothy Collins, MD's response:
I have chronic migraines,headaches. I'm fighting everyday to not have one, light bothers me ALL the time. I get severe confusion and stroke type symptoms, like an aura before a migraine. Sometimes with little pain at times. Do you think I am eligible for and EEG? I started this about 10 yrs ago, getting migraines, then they became more frequent, later to the point I was housebound a few years. And though I would never hurt myself but the pain was so bad I thought it would be easier, dying. When I would go to a doctor I was treated like a druggy and like white trash. I was insulted so badly I almost gave up on living. Yesterday I had a migraine coming on and the front of my head pulled down on the right side. I always have the pain on the left side but recently started getting bad pain in the front right top side of forehead. One thing I wonder about, is that I ate food in mexico, I have seen where parasites have burrowed in the brain, or eyes and cause seizures and migraines. I was wondering if any of these people have considered that. And if it would show well on a ct scan? But mostly I have seen that allergies or hormones are alot of the cause.I did, all the sudden became severely allergic to the certain trees, grass, and weeds After I moved to Colorado. I was camping alot when I started to get the migraines. I cannot walk out side and breathe the air without getting one, and w/o getting severe confusion and slurring. I was beaten in the head by ex, and had fallen off a horse when I was young and was knocked unconscious, my friends for a while but never went to doc for it. I wonder if these all factor in to this.( got off track) Yesterday and other times this has happened during the aura. The right side of my forehead pulls down for a moment then releases. Like a spasm. I wonder if the spasms could extend to the brain? I have had people tell me if I get a hysterectomy, migraines will go away, even those that had swelling and pain in the face that seemed like allergy related problems. I put it off, thinking it was allergy related migraines. But I am not sure anymore. I am thinking about doing it to rule out things. ( getting migraines after breathing the air though, makes me feel as if its not going to help getting a hysterectomy though) I have really a swollen lymph node behind my right ear, that has been getting larger.(nothing bad was seen with ct scan) my thyroid comes out normal,but its enlarged. I'm looking to see if its slow thyroid (a lady had bad migraines and extreme pms symptoms and took thyroid suppliments and migraines went away) . I'm so sensitive to light all the time its ridiculous, have to wear glasses in the house often. I wish that doctors instead of insulting us and telling us its in our head and just rip us off of our money when they do that, would be as eager to find the answer, seeing the pain we go through. And as for wife, do not give up. If you do he may lose all hope, and do something drastic. Marriage is for better and WORSE. It could be worse,believe me. Talk to others get ideas. I had to get on disablilty, I could not work anymore, with the confusion and migraines. Just think about this. God forbid, say you got lupis, cancer,illness that was very painful. Would you want your husband to give up? Love is long suffering,selflessness,enduring to the end, He is depressed because he feels like I did. I'm a woman,but I felt useless.He feels like he's a shell of a man,Incapable. I was very active,loved life,loved to help people, paint, worked two jobs. And it just ended when they came on so bad. I wanted to die, I could do nothing. I finally found a pain mangmnt clinic. He is depressed.He is frustrated and very fragile. He is only thinking of things he cannot do anymore. SO,you need to push him to see what he still can do. Build him up. I really want to start a support group,for people like us,so we can bounce ideas, have support, because Its a strain on a marriage.Hope by by now hes better.
 
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elishiva34 responded:
I have chronic migraines, also. Similar symptoms, do not give up. If you do he may lose all hope, and do something drastic. Marriage is for better and worse.. It could be worse,believe me. was abused badly,by my ex. Have him talk to others to get ideas. Has he ever eaten an thing outside of the US? Parasites from pork can cause these symptoms too. I'm getting checked for that. I had to get on disablilty, I could not work anymore, with the confusion and migraines. I have seen so many doctors. And they do not understand what alot of these are being caused from. They are grasping for things themselves. Just think about this. God forbid, say you got lupis, cancer,illness that was very painful. Would you want your husband to give up, because he could not depend on you? Love is long suffering,selflessness,enduring to the end. The house inside us needs to be clean, don't worry about the house your in. People lived in tents and huts before us and lived past our ages now. I have been alone and had to do alot alone. You might consider a support group. Your husband too for that matter for people like us. I can tell you he is depressed because he feels like I did. I'm a woman,but I felt useless. He feels like he's a shell of a man,Incapable and frustrated. I was very active,loved life,loved to help people, paint, worked two jobs. And it just ended when they came on so bad. I wanted to die, I could do nothing. I finally found a pain mangmnt clinic. He is depressed.He is frustrated and very fragile. He is only thinking of things he cannot do anymore. So he needs to be reminded what he still can do. Build him up. There needs to be a support group,for people like us,so we can bounce ideas, have support, because Its a strain on a marriage, and hard for the partner. Hope by now hes better.


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