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Posted 4/16/2006 7:44 PM (GMT 0)
Just wondering how your nearest and dearest cope with your migraines?  Do they get fed up with the intensity and frequency - don't we all lol!  Do they think maybe more can be done for you, like the Docs need to find something better and sooner?  What sort of support do you get? take care Ann.
Posted 4/17/2006 4:18 AM (GMT 0)
My parents live about a mile away from me and are both retired.  They have lots of activities that they are involved with, but they are always preoccupied with my migraines and health problems in general.  BOTTOM LINE...they don't deal well at all.  They both take an anti-anxiety/tranquilizer practically every day because they get so upset.  A lot of days my mother won't even talk to me, and on the days she does, she gets upset if I feel bad.  My dad tries to act as a buffer, and he holds his emotions as long as he can, but then he breaks down in tears when my mom goes off the deep end.  I really feel bad about it, but there's not much I can do about it when I'm in pain.

That's my two cents worth.

Leigh Ann cool

Posted 4/18/2006 8:21 AM (GMT 0)
Thanks for that Leigh Ann, my family try to support me best they can but they really have no idea what it is like to go through all this. I have been told that it's consuming my life and taking over every part and this needs sorting out as it is not as if I am going to die from it! I have had a lot of rotten stuff to deal with in my life and it hasn't been easy aside from the migraine, so there is concern that this is where my migraine stems from! Take care all Ann.
Posted 4/18/2006 10:48 PM (GMT 0)
Don't know if this is of any help but I am the wife of a migraine sufferer. He, however has other issues and his migraines just compound the issues. Just as every marriage has to adjust to what the other person likes/needs...I had to learn that he needs to be left alone even though I like to be babied when I don't feel well. Once I learned that and understood it things were much better. He has them for days and even weeks at a time. He even had one constant one for 2 years that had 38 seizures with it. After that one things have been better. He has chronic pain in his back now and has major issues with his medication which obviously messes with his head. We spent 2 weeks in the Diamond Headache Clinic in Chicago when he had that huge, long, seizury one and learned a lot about the impact of meds and migraines....since then, he takes NOTHING for his headaches and is MUCH better for it. As for me and the kids dealing with them....we've learned to have plan B. My family doesn't understand at all and that is the worst part. I spent years justifying and explaining but because of the chronic pain issues too they just think he is exaggerating the pain to get out of things.
Posted 4/19/2006 1:42 AM (GMT 0)
My family....

Mother, father, brother and sister (As I am not married and only have a dog...no children) do not cope well...they get tired of hearing about the pain and medications and me missing out on activities etc.

Now, I deal with everything ALONE...I take my medications and avoid things that I know are triggers. I try not to miss things such as family functions and outings but if I have to....too bad! I don't accept guilt trips and allow others to make me feel any worse than I already do physically.

I hope to meet someone some day that will be a little more supportive some day.

Now, don't get me wrong, my family loves me and prays for me but honestly doesn't support me in the ways that I need regardless of the ways that I have asked.  I have given them books to read and tried to share the information with them that I have learned and find so helpful. I know that this would give us a bond and better understanding. I also understand that I can not make them want to learn more and can not make them want to care more about this "THING" that is such a huge part of my life and ME.

I don't know what else to say other than I am doing the best to take care of myself...since it seems I may be on my own with everything right now.

For those of you who have a wonderful support system at home...don't take it for granted.

Sara

Posted 4/19/2006 2:42 AM (GMT 0)
That is too bad Sara. Is there anyone else in your family that have migraines? My family doesn't "get" my husband's migraines because they have never experienced it. My husband's family is riddled with migraine sufferers. Our 9 year old son already has them and our 6 year old's frequent tummy aches is possibly a young version that doesn't impact the head but rather that tummy.
Posted 4/19/2006 4:07 AM (GMT 0)

No, Frog...

I am the sole sufferer with Migraines in my family, they have back issues or high BP or something else that they can pin-point...this is "all in my head" or more chronic that I can't take a pill for and make go away.

I think I am a bit sensitive at times (well who the heck isn't after days and weeks of excruciating pain???) but I FEEL like they look at me like I drag it out and complain more than necessary etc to get attention and so I don't have to do things and go places. But really, I would prefer not to spend my check at the pharmacy and to not be able to eat ANYTHING because of what it might do to me....and gain weight because of drugs, and then lose so much weight because of vomiting for days at a time...(TMI...sorry)

Now, I just smile and nod a lot. I have one girlfriend that I share this stuff with...and of course you all!!!!!!!!!!!!!!!!!!!!!!!

The first time I found a forum such as this, I literally cried to know I wasn't alone!!!

Posted 4/19/2006 8:09 AM (GMT 0)
Thanks Frog and Sara, just reading that others are going through the same stuff helps. I cried too Sara when I first read the posts on here before I joined out of sheer relief that I wasn't going mad and there actually were other human beings that understood what a wretched existence this can be at times.

I am just going through a very low patch at the moment, not helped by the fact I am on my own with my teen son who is pushing the limits to extremes and sees me as pathetic at the moment, and a family member who thinks that I should be more bothered about my cholesterol level (and so should the Docs) as it is a little raised, than be talking about the migraines! - stating that I could die from heart disease but I won't die from migraine!!

Anyway thanks guys, take care Ann
Posted 4/19/2006 12:08 PM (GMT 0)
I am so sorry you are all going through such pain with such little support. I'm not sure if my venting from the other angle is helpful or hurtful so feel free to tell me the vent elsewhere.... I really struggle with the fact that I am trying SOOOO hard to support my husband and make life okay around his headaches, give him what he needs when he is in the midst of one but he doesn't acknowledge my efforts AT ALL. I get verbally bashed all the time (during of course) but also afterwards. I wish he could see that it is REALLY hard to be in my shoes too. I am the furthest person from needing to be "thanked" for what I do, but bashed is harded to take. I really think he takes me for granted.
Posted 4/19/2006 2:28 PM (GMT 0)
Please don't go and vent somewhere else Frog we need you here! Lets face it migraine is the pits whether you are the sufferer, the sufferer's spouse or any other family member, each one has there own valid view point, and maybe I need to understand things from someone elses point of view!

At one time during an attack I just wanted to be babied too (it never happened!) but now I just need peace and quiet and to be left alone and to know that things can tick over without me for a while until I am able to function again. But for me most of the time that doesn't happen either!! More often than not I have to carry on with the day until I can no longer stand, and have no choice but to give in.

I think you are brilliant to have a plan B, and accept that Plan B could be a reality! I usually try to but it quite often backfires! I just wish others could accept that sometimes!!

Thank you all for your support! Take care Ann.
Posted 4/21/2006 2:55 AM (GMT 0)

Not to be happy about this Ann, but if they want something to talk about....

I read in an article about Migrainous Strokes that "more people died from Migrainous stroke last year than were murdered by handguns" (27% of all strokes suffered by persons under the age of 45 are caused by Migraine)

(to check out full article...visit:

http://headaches.about.com/cs/education/a/hp_ingore_not.htm

I realize that is not happy news, but something to take serious!

For those who don't want to read the full article:

status migrainousus is a migraine that lasts longer than 72 hours with less than 4 continuous pain free hours

 

Aggressive treatment is generally necessary and generally includes:

**electrolyte and fluid replacement

**pain medication

**treatment of nausea/vomiting

**drug detox

**beginning or altering existing preventative medication treatment plan

Posted 4/21/2006 9:29 AM (GMT 0)
Wow thanks so much Sara for this, I have been on the site and got some stuff printed off. I knew myself that you could die from migraine related stroke but had not found anything put quite so well to share with the family - thanks so much, take care Ann.
Posted 4/22/2006 12:30 PM (GMT 0)
Hi everyone!  If you have read any of my other posts, you will see how amazing and wonderful it was for me to finally find this forum!!!  I have lost so much in my life because of my migraines, it is really comforting to know that I am not the only one...I was losing my mind for awhile there.   Most of my friends have run for the hills.  They are tired of me always having to change plans, postpone things or simply cancel out.  My very close friends, since childhood, have never left my side!  There is a lot of distance between us, but they are wonderful!  My husband has lost a lot of his friends as well, they don't understand why I am this way and why he feels he needs to be here with me.  I try and convince him to go out, see people, but I only succeed in that about 1/2 the time.  The other times, even though I need to be left alone with a migraines, he just wants to be in the house in case I need anything.  I don't think I could have ever wished for a more wonderful husband!

As for my family, they try.  I know that my parents are at the end of their ropes with all of this, it is killing them to see me in pain all the time.  My brother and sister have just sort of distanced themselves, only talking to them maybe once every other week, if that much.

I have taken up a lot of crafts, things I can do here at home when I am lonely...which is too often.  I am an avid fan of the food network...and you know things are really sad when I can almost recite the TV guide without even looking at it sad

I just want to say a sincere thank you to all of you on this site.  It is comforting knowing that there are people I can talk to about all of this, it has really done a tremendous thing for my self-esteem and "saneness." 

Frog, if you ever need to speak to another spouse, let me know and I will see if I can get my husband to participate...I think it would be a good outlet for him!

Posted 4/22/2006 2:29 PM (GMT 0)
Tlhess....that would be great. I know listening to and communicating with those going through the pain has been helpful to me...but it there is an entire different set of feelings, frustrations when you are the spouse. My husband hasn't dealt with this well and treats me like crude most of the time...I know it is becauses of his pain and his difficulties dealing with living with this...but it make it really hard. As the spouse I also receive all the verbalization from those who don't understand. I feel like I'm constantly excusing and justifying and sticking up for what is happening, even though how he treats me is not excuseable or justified. I too had lost all my friends - it is very hard for our kids to have friends too and it breaks my heart.
Posted 4/24/2006 3:35 AM (GMT 0)
Frog, I am going to see what I can do mainly because I know it will help him. He is, and always has been, stand-offish when it comes to talking about his feelings, but I will see if he can at least open a little to someone who is going through the same thing. Thank you so much!!
Posted 4/24/2006 4:44 AM (GMT 0)

And you know what really sucks?.... When your "loved one" takes the opportunity, upon hearing about your current migraine, to psycho-analyze why you are getting these headaches, or why your current medication regime is all wrong.  My biggest pet peeve is when my mother gets up on her soap-box, just when my head is pounding, and tells me I'm too strung out on painkillers to receive much help.  I only take low-grade narcotics occasionally, but that catagory is the only thing left (I've tried EVERYTHING ELSE!!! skull ) that gives me any relief.  She acts like I'm some junkie, addicted to heroin or something, and that the only answer for me is to detox in some rehab program.  OR go cold turkey on my own(for like two months).  I can't get a migraine without wanting to **pull my hair out**(just to release the pressure, not off myself).  I can't comprehend going through two months of migraines with no pain relief.  Can you?  Man, she just really **ticks** me off sometimes.  She acts like if I just get up and do something, my headache will just go away.  I wish I could give her one of my migraines, then she might get it. 

OK, I'm thru venting now.

Thanks,

Leigh Ann cool

Post Edited By Moderator (tysmyboo) : 4/26/2006 9:47:07 AM (GMT-6)

Posted 4/25/2006 3:15 AM (GMT 0)
Hi everyone. I just found this forum today. I have had migraines since I was 12 and I am now 48. I was looking for information regarding Diabetes and Topamax because I have started having some strange symptoms with my diabetes. I have a feeling they are going to be taking me off the Topamas.

I am so sorry for all of you who do not have the support system. At first I did not either. My mom did not understand the headaches. After marriage my husband didn't either. He was off to work before I was up and around and by the time he got home I usually had them somewhat under control, barfing had pretty much stopped, just the pain, thought how could it be that painful, he has a high pain threshhold. Well he happened to be home when there was a fullblown headache, vomitting, bloody nose, you name it. He then had a new respect for what I was going through. He now is attentive, or just leaves me alone. He lets me decide what I need. If I say I need a trip to the ER that is where we go.

I wich all of you the support you need.

Debbie, new member
Posted 4/26/2006 1:03 PM (GMT 0)
Cranky - although I am not trying to side withyour mother and I believe when you have a headache happening is NOT the best time to approach the issue of meds - let me share what I've learned with my husband's headaches - just as information for thougtht - not nagging.....

After a back injury my husband's headaches when WAYYYYYYY out of control. His normally last a few days to a few weeks but they built until he finally had one for two straight years!!! He was not able to function, he had 38 seizures, he looked like a war prisoner he had lost soooo much weight, had no color and layed in bed in pain. We went everywhere. When he was as the Diamond Headache Clinic In Chicago, we learned something that makes total sense.... the pain meds that he was taking for his back injury can damage the receptors that grab on to seritonin (spelling?) in your brain, what migraine sufferers lack, to cause more headaches....they also cannot grab onto the meds you take to help migraines, therefore you have more, for longer, with little to no relief. At the time my husband had the same reaction I hear in your post. NO WAY - PLEASE UNDERSTAND!!!!!
Anyway, to make a long story short, we did have him go through detox and within 14 day his headache went away and he has not had a seizure since. This was about 11 years ago and he still refuses to take even a Tylenol for his headaches now.
He is struggling with a back injury that has forced him to takes meds...needless to say his head is starting the same cycle. He is going in for a pain pump soon and we hope it now only allows the relief he needs for his back but also allows his receptors to heal enough in his brain again to have headache releif.
Again, not trying to nag or say approaching this while you are in the midst of a migraine is the best time to do it but please hear what happened to us and think out giving it a shot.
Also, again recognizing that it isn't right - I understand the trap of approaching the issues while inthe midst of a headache from your mom's side because when you are not in one....waters are calm and you don't want to rock the boat...although not right it is a trap non sufferers face. YOU can stop this by opening the door for conversation while you are doing okay - trust me - this will help your mom and meet your needs to not be nagged while in the midst of a headache. I'm sure she means well - her efforts are just backfiring on her intent.
Posted 4/26/2006 2:12 PM (GMT 0)
Tlhess, I am so glad you have your husband rooting for you, from the sounds of what you said you have had some self-esteem problems, are they related to your migraines? - my self-esteem is still low but for many years was near non-existent so there is now great improvement for me, I used to feel guilty for every attack I had - still do sometimes but it used to be all the time.

Cranky I can so relate to how you feel as I can sometimes feel like I am under attack from family during a migraine, which as you know just makes you feel worse, but as Frog said its a trap that is easy to fall into. I suspect my family could relate to that!!

Frog did your husband ever take Imigran(Imitrex) and get the same problem as with other painkillers? I know that Imigran is not a painkiller as such and I know it responds to migraine in a different way. I used to take a painkiller a lot that I bought over the counter that had codeine in and as codeine is a narcotic and therefore addictive it ended up with me having a headache of some sort virtually daily. So I switched to Ibuprofen, but before I did so I attempted a 14 day don't-take-anything which resulted in such a bad attack after a week that after 12 hours of agony was only becoming worse as time went on - after consulting a Doctor my sister was told to give me the Imigran injection as it seemed cruel to leave me in that state. I have soon realised that if I take more than a couple of doses of Ibuprofen this too can spark another attack, so I am taking very little of it now and am relying on the Imigran. For most of the time the Imigran does work but just occasionally it doesn't do enough. Over the last few days I have had 3 Imigran injections within a 48 hour period and still feel rough! I just hope and pray that I don't have another attack today!! I am probably a little dehydrated from the jabs if the powerful thirst I have today is anything to go by!!

Anyway thanks to you all for your input, take care Ann.
Posted 4/27/2006 4:26 AM (GMT 0)
Annuk, Thanks for asking - my husband has tried imitrex (in all forms) but it doesn't work for him. It does for his mom and his aunt so we were hopeful, but it didn't.  It is wonderful that you have found 'something' to at least help a little bit.
Posted 4/29/2006 11:11 PM (GMT 0)
hey ann

you know it is real hard to watch ppl you love in so much pain, but we just get on with it, these sites are great, there is so much support, that no one should ever be alone!!!

i will always be there for andy, and i hope i can help you guys on the site too!!!

did you ever hear about your appt for Queens Squre?

tc
sandra xxxx
Posted 4/30/2006 11:43 AM (GMT 0)
Hi Sandra, Thanks for asking about Queens Square, but I am still waiting!!!.....Had a bad few weeks, this last week had 4 Imigran injections in as many days! I have been back yet again to my GP - who I feel sorry for as they are doing the best they can under the circumstances but are not qualified enough to deal with this - but bless them on my request they put me back on Propranolol on Friday so I am feeling a little better.

Thanks Sandra you are a real encouragement here and I for one am very glad of your input! I reckon I will not hear from Queen's Square until July/August - but am still praying and hoping it will be sooner! How long did Andy have to wait for his very first appointment after being referred?

Take care Ann.
Posted 5/1/2006 2:25 AM (GMT 0)
hi ann

we were quite lucky that he didn't have to wait too long, we are also waiting on word for him to go back down again, this time for the indomethacin test, to rule out Paroxysmal Hemicrania (which is a h/a similar in symptoms to Cluster, but shorter acting, plus you get more attacks than CH)

have you tried looking at the support board at ouch uk, i am sure there could be someone there who could give you better advice than me about Queens Square!

i am sorry you are having a tough time just now, and are having to wait so long for your appt!!

please if you get the chance, try and check out the site, i am certain that someone there will be able to help

sandra xxx
Posted 5/1/2006 9:36 PM (GMT 0)
Hi Sandra, thanks for that. I'm dreadful at joining up with these things to begin with...I visited HW for ages before I joined. I have looked on the support board at ouch uk and found some interesting stuff to read, but my brain seized up when it came to posting something. I think because I have not got a firm diagnosis about CH I am feeling unsure of myself. It seems to me that I have little bits of all sorts of Migraine, I have the blocked nose on the affected side and the burning into the corner of the affected eye, but also the affected side of my face droops and the eye closes and there is a bit of numbness sometimes and of course there is what I call the 'yuk factor'!!! - that being the lack of concentration and the general rotten feelings and nausea and weakness. Where I differ from the CH is although I often wake up with the pain at a similar time in the morning the pain will stay around constantly getting worse for 24 hours or more unless I abort it!

Thanks again for your support, take care Ann.
Posted 5/1/2006 11:31 PM (GMT 0)
ann check your e mails

sandra xx
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