The last 13 weeks have been really rough for me and my FH. My FH suffers from cluster headaches. cluster headaches, occur as a severe, and sudden headache. No specific cause has been found for the disorder. but this is not your everyday headache.
women who have it say that it is worse than childbirth, the pain is that severe. it is not like a typical migraine. my fh walks around pacing frantically with pain on one side, his one eye gets smaller, it is really freaky.
the pain that he has is debilitating. he can not work when he gets one of these attacks.
he has been to many different neuros-thank g-d there is no tumor. he is on meds like imitrex injections, steriods, verapamil, but they are not helping. the only thing that can stop the pain sometimes is pure oxygen. he does have an oxygen tank in the house to use. but after an attack he is so tuckered out.
this has affected us in more ways than one. financially, emotionally, mentally. i am at my breaking point. he is freaking out b/c with 98 days to the wedding, he is afraid these will never go away.
i am sorry this is so long and so personal. i have been so emotional and panicky at the same time for him. and the burden of the wedding has been on me for so long that i am just cracking under pressure.
i am lucky to have such a wonderful support system with my family and his, but sometimes they just dont understand.
thanks for putting up with me. i feel better just having written all of this.
JimmysBride
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Re: I need your support-very long
I'm so sorry you are both going through this!! I'm sending you lots of hugs and prayers that he gets better very soon!!
oakslady
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Re: I need your support-very long
you are wonderful for being so supportive for him - keep trying different neuros i saw 12 before i found the one i have now - sometimes it takes finding the one who is up to date on the latest things to help i can understand how you feel - i am not going to get into specifics but i have a really rare neuro condition that they origionally thought was migraines then cluster headaches but turned out to be intercranial hypertension - i do the pacing thing way into the night so i empathize -
goingtobemrs
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Re: I need your support-very long
I never heard of cluster migraines. Sounds rough. I got for many years aura migraines, which means I lose almost all my vision for 25 minutes, and then get the migraine. I used to take Imitrex and last March went to the emergecy room after getting a migraine every day and the Imitrex not working. My vision didn't come back completely. They gave me some shot which calmed me and made me feel a bit better, but when I got home, nothing had been solved. I went to a neurologist who did NOTHING. Oh wait, he check my heart and basically told me I have to accept that I get them and deal. Never said what the vision loss was, I looked that up online. Anyway, after a while they became more frequent and he wouldn't send me for an MRI, and that is why I'm switching doctors and neurologist. I went to my OB/GYN and he said they should be more helpful and should make sure nothing major is going on. I stopped the pill and realized I feel MUCH better, haven't gotten a migraine since. But about your FH, just try and get him to relax. And too much time on the computer is not good for your eyes either. I also changed my screen to light grey instead of a white background in Word, Excel, etc. so it isn't a big strain on my eyes. Migraines suck! Most people grow out of them by their late 20's. I'm 26 and hoping that will be the case for me. Good luck!
cluelessbride
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Re: I need your support-very long
Peg I am so sorry for your FH and for you! You are wonderful to be so suppportive but at the same time it must be very stressful for you. Don't forget to also take care of yourself. I wish you all the best.
janwinterbridejoy
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Re: I need your support-very long
im so sorry peg. i can so relate because i have stress related migraines and the only thing that helps is imitrex especially the shots. maybe his cluster headaches are stress related? have they become more frequent during the wedding planning? maybe he needs to to talk to someone and unload all the stressful feelings that a wedding and the finaces attached can bring. i saw someone for my stress condition and it really did help. i m sending you loads of hugs and feeling better vibes for your fh
goingtobemrs
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Re: I need your support-very long
I have a new drug for my migraines, stronger than Imitrex. Frova. Tell him to check it out. It works much better for me.
palebride
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Re: I need your support-very long
i dont' know what i can say to help....i just hope it gets better. i suffer from some pretty terrible migraines, but not all that frequently, so i can and can't imagine what he is going through!
shelly3950
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Re: I need your support-very long
I'm so sorry you are dealing with this. By supporting him during these times, and standing by his side- you are giving him one of the greatest gifts a person can give- you are supporting and standing by your loved one during his weakest moments. This will make your marriage stronger and your relationship closer. I can't imagine how hard it can be at times, but you are an amazing person who will have all the happiness you deserve!
LIJuneBride
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Re: I need your support-very long
Maybe you should look into alternative medicine - like acupuncture. Many people get good results with that.
I think it shows the strength of your relationship that you handle this together. I can see your love by reading your words. Just be there for him. I hope he feels better.
randella
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Re: I need your support-very long
If the headaches come on at particular times of the yearm and now they are getting worse and the occurances are a-typical-- maybe it is stress bringing it on.
Why don't you try looking into some relaxation methods, as well as planning for, then taking a 'vacation from wedding planning'. Maybe get away for the weekend to not even mention the word wedding.
It sounds like a very difficult thing to deal with though.. Try to stay focused on all the good things to help get you through.
nov.bride
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Re: I need your support-very long
I am sorry that this is happening to you two- sounds so debilitating and tough- just hang in there with him- hope these attacks subside soon
sea2ny
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Re: I need your support-very long
You absolutely have my sympathy and support!! My FH has to deal with me and those headaches...I know they're migraines, but 90% of the time I wake up with them and go to sleep with them for 3-4 days...heaven forbid they go any longer. I was on Imitrex for awhile, but I felt like I was out of my skin when I took it and that doesn't go well at work...soooo, I am now on Maxalt. Has he tried that? I know everything works differently for everyone, but maybe it's worth a try. Good luck and hang in there..... Hillary
Russo'sbride
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Re: I need your support-very long
Im very sorry. That must be terrible. I would just pray everyday that things will workout and he will get better. Just try to think positive.
nferrandi
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Re: I need your support-very long
I'm so sorry that you both have to deal with this. I agree with the suggestions to look into an accupuncturist, even if it helps just a little it would be worth it. I know how overwhelming it can be, my sister has a AVM, which is a arterial ventricular malfunction. The arteries and veins in a section of her brain are entangled and she suffers from really bad headaches and has had 2 brain hemorages in the last year- the last one in April was really bad and she was in a coma for a week. It's tough to be strong for someone else and sometimes you need to just let yourself have a little breakdown. Have a good cry and then do something nice for yourself- get a manicure or a massage, go out for a nice dinner, get some icecream- whatever works for you.
JZNCK
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Re: I need your support-very long
Definately just TRY to be there for him, you'll find something that helps.. Has he tried the injections they have, they seem to work for my frined, and to hopefully help your feelings a little, my friend had them and hers have gone away!! she gets them sometimes, like maybe once every six months.. she kept taking the autoinjector and that worked..
GOOD LUCK!!!!!!!!!!!!!
AndreaLMT
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Re: I need your support-very long
I am so so sorry. I suffer from severe migraines that I take daily meds for & carry injections around with me at all times, but it doesn't even sound close to what your FH is going through. Just be there for him, & know we're all here when you need us!
teacherwheart
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Re: I need your support-very long
I just wanted you to know that I think you are amazing to be so concerned and to be stadning by your FH during this time, he needs you now and it seems like you are really there for him. I hope at some point this too shall pass. My grandmother about 10 years ago had a skin condition no doctor could figure out. She went to countless dermatologists and other doctors to no avail. She then started going to a Chinese herbalist and an acupunturist and started taking these non traditional medications and she is in so much less pain. It had a lot to do with certain foods and a whole bunch of other stuff. She did a lot of research but it really worked well for her. If you would like I can give you some fo her doctors numbers and the names of the stores she goes to for certain medicine and food and stuff. Its not for everyone but you never know.
Maribelle7777
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Re: I need your support-very long
I'm sorry that the stress is getting to you!
That must be so horrible for your FH to go through that, and for you too.
Can you talk to family & the wedding party and ask them to help you with things up to the wedding? Tell them that with his med. condition, you have to take on extra responsibilities and you'd like some people to help with the wedding tasks. I'm sure they'd be more than willing to help. That would take the pressure off of you.
I hope that one day doctor's can find a cure for what your FH has. And you know we're here anytime you need to vent
ETA: I agree w/ Teacherwheart - alot of medical conditions can be helped with changing one's diet. I was told by my doctor's that food or diet wouldn't help lessen my crohn's disease attacks. Only not to eat spicy/fiberous foods during it. But I have found that if I stop wheat/grains it makes me feel sooo much better. Perhaps your or your FH can do some preliminary searching on internet to see if anyone has found that diet does affect his medical condition and have him talk to his doctor again. Maybe seeing an accupuncturist wouldn't hurt either.
Good luck
sophie78
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Re: I need your support-very long
I am sorry to hear all of this. Did you know that Botox injections have been found to help people who suffer from chronic headaches? Maybe that is something to look into.
