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My partner has migraines. I guess. I am looking for anyone who has the same experience as I am having. Because our lives are being destroyed by this. Her neurologist says everything we are going through is because of migraines but I don't believe it.
I have been with her for 9 years. in the beginning she had debilitating pain once month or so. This led to er visits and heavy pain medication. Then it got kind of better for about 9 months. In the past year or so, everything has gone to hell. She slurs her speech. She gets completely disoriented. Think, drunk. She acts like a complete angry drunk.staggers, argues, can't get her words out. sometimes, this is so bad that she ends up insisting she go to the hospital even if there is no pain. Sometimes, though, she is only a " little" drunk... Similar symptoms, but not as bad. Right now, she is slurring her words, yet, arguing with me about my getting a mammogram (?) . What this has to do with anything, who knows. But she is.
This occurs like clockwork every two weeks. I could fill this with various stories of how awful things have gotten, the arguments, etc. That's only kind of the point. The point is that the neurologist claims that every symptom she has is a migraine. There is no rhyme or reason. No obvious triggers. No consistency in her behavior beyond the slurred speech and argumentative attitude. No prevention works, nothing stops it. It's like living with a ticking time bomb. Who knows how bad it will be?
I am angry when this happens. I am tired and frustrated. I have sacrificed so much because of this crap and now I fear that our nine year old is getting warped because of it.
The final part of the cycle is the part, when it's near over or over, when she cries and tells me I deserve better and that she is awful for me. She gets depressed for days and fears I will leave her. She tells me how everything I do or say regarding the migraines puts pressure on her. I feel Like if I have any reaction at all to her issues, then somehow I am hurting her or upsetting her.
If these are migraines, then I not understand why her neuro doesn't put her on disability, because she can't really keep a job. I am a logical person: if you have n illness that disables you, go on disability so your family can survive.
I feel like if I knew for sure this was migraines maybe I wouldnt be so freaked out. But I think there is something bad wrong. how can this cluster of unrelated, inconsistent, unpredictable symptoms all be a migraine? I know many many people who have migraines and no one reacts like this. Just her.
Everything I feel results in me somehow making her feel bad. Everything. She picks apart my words and looks for reasons to beat herself up with what I say, but she won't let me not talk. She won't let me alone. She picks until we fight.
The kicker? When this is not happening, she is a completely different person. Completely.
This is a migraine. And if so, what do I do?
Thanks for listening.
Let me ask you the most important question of all - How much do you love your partner? I'm not trying to be intrusive, but that's the biggest question anyone who loves someone with migraines has to answer, truthfully, because migraines can make life hell.
My wife & I have been married over 25 years now. Her migraines got to the point where we were lucky if there was even one day a week when she wasn't down for the count with a terrible migraine. Her moods? She'd tell you herslf that they were terrible. Anger? Yes. Crying and sobbing that I deserved a better wife? Yes. A year? Much, much longer. She went to doctor after doctor locally. Then we went to a supposed migraine specialist 100 miles away. Treated with that doctor for nine months before Teri got so angry that she fired her. Then we waited for an appointment with a specialist 8 hours away, waited FOR NINE MONTHS of living hell.
Teri would tell you that there are so many possible preventives that it's impossible to have tried them all. I've talked with her specialists and seen the list of possibilities. If you give them each a fair chance, it would take over 300 months to try them all. That's 25 years.
Have you ever applied for disability? From what I've heard and read, it's hard enough to get disability when your condition is visible and obvious. Teri has told me what people with "invisible" diseases like migraine go through to get disability. It's not the doctors decision to "put her on disability." It's the doctor's job to treat her migraines. Has she asked her doctor about disability? From everything I hear, it's nearly impossible to get disability unless you've been totally debilitated for at least several years. Then there's the other side of disability. How would she feel applying for disability? Would she feel like the migraines won? That's why Teri has always absolutely refused to even consider it.
Did you know that migraine is a disease? That there's no cure for it?
You asked what to do. First, does your partner's doctor know what he's doing? Is he really helping her? If not, help her get to a real migraine specialist. Then go to her appointments with her and take part in the discussion. Ask questions if you have them. Ask the doctor what you can do to help.
I hope I haven't painted too dark a picture for you. Let me lighten it a bit. Going that 8 hours to see a specialist was the best decision Teri ever made about her migraines, and I'm glad to say that I went with her. It didn't happen overnight, but now she only gets a handful of migraines a year, and a migraine usually only lasts a couple of hours. She and her doctor worked hard to get to this point. There were medicines that didn't work. There were times when she felt like giving up. But when you love someone, you don't let them give up.
First of all, I apologize that my screen name is slightly different, but I could not log in and had to re register. :-)
Thank you for your input. I still, however, am not certain how I can tell if what she is experiencing is a migraine. Did your wife stagger and fall, sometimes injuring herself? Did her eyes "pin", meaining the pupils would become unrsponsive to light? Did she shake and drool, like she was having seizures? Was she completely fine one minute and within a matter of hours be "gone", and then back again a few hours later, and then "gone" again? Did her words slur so bad you could not understand her? When she argued and fought with you, did she attack you personally, say awful horrible things to you, threaten to leave you and then later, remember very little of what had happened? Did she often times have no pain, or little pain when her migraines hit? But then other time have pain so bad that only several shots of morphine would help? was there a trigger to her episodes, or did they seem related to nothing at all? Was she able to hold a job?
I could go on and on with some of the symptoms she is experincing. Again, her neuro says they are migraines, but how do I know she's not having strokes? Or seizures? Or a tumor? Or something worse? She has been to the hospital so many times, they think she has psychological problems (SHE DOES NOT!!!). I don't think they are examining her fully any more. I have asked them to test and see if she has had seizures after the episodes, but they say no. But sometimes she shakes and drools. She always loses some part of her motor control. That's a migraine?
To answer your questions: I love my partner very much. This is why I am looking for answers and pushing her doctors.
My whole famiy has migraines, including me. I know it's a disease and that there is not a cure. But it can be managed.
Disability is not easy, but there is a starting point. She spent more of the last few years on short term disability. She is about to lose her job (again) and her health insurance. Also, I get not wanting the migraines to win by having to be on disability. But who wins if we lose our house because she is physically unable to work?
I also think I should have been more specific in asking what I do. I meant in the middle of it. When she is pushing me and picking at me and staggering and refusing my help, but won't help herself. When she is verbally attacking me and our son and he is hurt and confused. When she is shaking and drooling, but won't go to the hospital. When she is barely able to walk a straight line, but insists on getting in the car and driving (it doesn't happen, I hide the keys). In the middle of the attck, assuming this is a migraine, what is the best thing to do, to keep her safe and keep all of our sanity in tact?
Thanks for listening.
My wife exhibited many, but not all of the behaviors you asekd about. Sometimes, she knew what triggered her migraines. Sometimes, not. That's something that got straightened out once she saw her migraine specialist. It turned out that she had a condition that caused her spinal fluid pressure to be too high, and it was triggering the migraines she couldn't identif the trigger for. No, she certainly could not hold a job. 5 or 6 days a week, she couldn't even get out of bed.
Everyone's situation is different, so it's hard to tell you what you should do. There were times when my wife's mood swings and other emotional issues during migraines were very hard to watch, especially since there seemed to be nothing I could do to help. Her doctor explained that the levels of the neurotransmitters such as serotonin, dopamaine, and others can jump around wildly during a migraine. That's part of what a migraine does in the brain, and that's what caused the emotional issues. During a migraine is the only time I've ever seen Teri have a panic attack. At other times, she's one of the most least likely people to panic.
If you're having to "push" her doctors so much, it really is time to help her get to a real migraine specialist. We discovered that neurologists aren't automatically migraine specialists. We knew more about migraines than some of the neurologists we went to. Some of them didn't even know that migraine is a real disease.
The best thing I can suggest ast being "the best thing to do, to keep her safe and keep all your sanity in tact" is get her to a real migraine specialist and go with her. Write down all of your questions so you'll remember what you need to ask. Be an active participant in her appointments and her care. If her insurance pays for it, great. If it doesn't, do whatever you have to do to get her to one anyway. If you have to travel, do it. We paid a lot out-of-pocket that our insurance didn't pay. We also had to drive 8 hourse each way and pay hotel bills. It was the best investment we ever made.
I agree whole-heartedly with absolutely everything John said in his posts.
I know it's very hard to see sometimes how things can be migraine-related, particularly when they mimic other things. A nagging little part of you always wants to be able to definitively pin things down. The thing is, though, that migraine is very much a shape-shifter, and it can change very suddenly, and very drastically at times. Getting a firm diagnosis can be tricky, and often the diagnosis comes at the exclusion of other things. The bottom line is to keep working with the doctors to exclude other things and get a firm diagnosis. While it's good to keep an open mind about what the possible diagnoses might be, it's equally important to be willing to accept that it could indeed be migraine, too. If you don't feel like the doctors are being thorough enough, then by all means ask them why they are opting not to run certain tests. They might see symptoms and signs through their exams that rule certain things out, and would make a test not worth the time and money to run. They might have a good rationale for not doing a test or procedure. It's important not to assume that they're not looking just because of outward appearances.
I can tell you from my own experience that the moodiness can get quite severe at times, and can turn on a dime. Forget simply snapping and being a bit owly. Sometimes you rage at little things. The hardest part of this is that you sometimes realize it's happening, but you are powerless to shut it off. You can go from an elated, giddy feeling like everything is right with the universe to wanting to pulverize something suddenly. It can seem erratic, irrational, and extreme, because it is. Yes, this can take a toll on a person, and on relationships. Sometimes you have to learn new ways to navigate things together so that it stays friendly and supportive. I know that's hard, though, because it's sometimes very hard to remember not to take things done or said during a migraine personally.
Many of slur and act "drunk" during attacks, for lack of a better analogy. We do get impairment of our motor skills. I've wandered into many a wall, cabinet, piece of furniture, and so on. I've had many migraines that left me impaired enough to know I must appear drunk or drugged to someone that wasn't "in the know".
I've also had my share of migraines without pain. Those are called acephalgic, or silent migraines. Headache itself is just one of many possible symptoms of migraine, just like sneezing is one possible symptom of a cold. Headache is not a prerequisite thing with migraine. It can be absent, and the attack is no less a migraine than if the head pain was present.
As for drooling, a big yep. In fact, my screen name was *born* during a bout of migaine in which I was drooling big-time. Shaking or in my case, trembling? On occasion. Sudden, out-of-the-blue onset. Yep for that one, too.
As for what to do during an attack in terms of keeping things safe, that is probably something best worked out ahead of time, when you can discuss plans of action at a time migraine isn't present, and both of you can think clearly.
I hope that helps some, from the perspective of a migraineur that's been through some out-of-the-ordinary or exaggerated symptoms herself.
I know this is an old post, but if Tired-and-sad is still around I would like to know how you and your partner are doing. *hugs*
Semper Gumby - always flexible.
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