Rebuilding my life has been tough. Things I loved to do, I no longer can or will do out of fear of triggering another migraine. My favorite pasttime, playing soccer is gone. With it went the socialization and comraderie that goes along. After a mere couple years of migraines, I prefer to stay at home as a precaution. Not a good tactic to take, but it seems everything I do revolves around the migraines...be it what will set another one off, or having one. And of course all these worries certainly doesn't help my migraines at all (not). What do others do for the isolation feeling? Had I a broken limb, it would be much easier since others can see and relate to such a thing. I prefer a "quiet" lifestyle as I still have much to learn about other "triggers". My migraines started with a car accident several years ago. I have at least 2 migraines a week and am still trying to learn other ways to "predict" or respond to them. When the migraines arent present, the headache alone puts me in a "hot place". I am not totally debillitated and forced to stay on my back, and the headaches are so bad and constant, that it makes "functioning" awful. I have a high tolerance for pain, but this has been a very humbling experience.
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I can totally relate to the issue of your migraines and fear of triggering one making you "isolate" yourself from what used to be fun and leading what is considered a normal lifestyle. Even my family has confronted me on this issue and is very concerned about the fact that I no longer spend time doing anything but stay home where it is quiet, dark, and "somewhat" calm. I have been dealing with migraines for at least 4 years and have been placed on numerous preventative medications which include Topamax, Neurontin, Lamictal, and Keppra. All with no relief. I am currently undergoing Botox treatments which seems so far to be helping somewhat but I still have headaches quite often-most of which are not as severe but are there nonetheless. I'm afraid I don't have any advice for you other than to let you know you're not alone in this worry. I will be following this thread to see what others may have to input.
Dear Susan and Christal,
I too, understand having to avoid certain activities or outings, even vacation travel with family due to my triggers(bright lights, loud places, lots of motion or change in altitude, change of routine(a biggie!!!), etc. I have decided to tell the truth about why I choose to avoid or simply say, "no thanks" and not apologize for it. Its very hard because we are taught to please others, but when it comes to our comfort and well-being, we need to support what works best for us. Maybe its finding someone who has the same problems or planning things a different times of day. The worst part is the unknown: making plans and then having to cancel. I usually decline invitations unless it is a really good friend or family member I can TALK TO about my migraine. If people aren't willing to understand or listen, then they are not who you need to be around. Better to take care of you!!! I don't know if this will help, but maybe give some moral support if nothing else. We as migraneurs all have to find our comfort zones and build as strong a network as possible with eachother so we can get to a stronger place and participate more in life. First things first. KD Austin TX
It is comforting knowing I'm not alone in my "habits" now. I used to play soccer 3-4times/week and this a.m. I can't even motivate myself to take a walk. I have been trying to walk to get some kind of exercise and feel better, but there are funks where it is too much work. I guess this is one of them (or should I say, one of many). I find it hard to be the one who has to work myself out of the funk, for nobody can do it for me...(yadda, yadda, yadda) I'm not making fun, for I'm a psych major, but boy am I tired. I thought about the last few years and my family. They have been supportive and helpful, but no one has really stepped up to take some of the burden off of me. I had a really bad medicine cocktail last year where I had to walk with a cane I was shaking so badly. The reason was not one doctor (out of 2 neuros, one primary and a pyschiatrist) exchanged information. I gave them all the info; they just never compared notes. My family didn't keep track either. I was the one who was responsible for keeping track. I'm better now, but at the beginning, I couldn't remember my daughter's name and they wanted me to remember to take the right pills/doses. The brain trauma part is getting better; perhaps that's why I'm a bit perturbed looking back, but I really shouldn't have had to be the one to direct the actions of those around me. For a year and a half I did a horrible job with my meds, and still no one "took over". Maybe I'm being too harsh, as I would have done things differently as an "observer". (Actually have been an "observer" at one time and did do it differently) I'm overwhelmed by the fact that any progress I make, must come from me. I am the one who has to rebuild my life and it just sure would be nice for someone in my family to lead once in awhile. Don't get me wrong, they love me to death, but I am the foundation. This is a role they never had to play, so I should not expect anything different, but the expectations are still there.
Are they too high? Am I being unfair? Sure doesn't help my feeling of isolation though. Any advise????
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I know how frustrating it is, but don't lose hope just yet. There is bound to be a Migraine treatment plan out there for you, it just hasn't been found yet! If we have three or more Migraine attacks a month, it may be time to be on a preventive medication. This is more important than ever because a recent study has shown that people with a long history and/or frequent Migraines are at an increased risk for silent brain damage. For more information read this article: Yes, Migraines Can Cause Brain Damage.
This article, Migraine and Headache Specialists-What's So Special? has real good information about the importance of seeing these experts. Migraine specialists devote their entire practice to treating people with Migraines and headache disorders, taking extra classes in this area and learning about any new research or treatments. Take a look at our patient recommended specialist list HERE.
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