MAV spouses

So I’m the spouse of a MAVer. We also have a 17mo DD and a 3yo DS. My hubby’s MAV episode started in Dec 2010 (and yes, he’s on this board - Furnok). He had some initial success with Sandomigran but then that stopped working. Currently he’s been on Sibelium since Nov 2011 (got to about 80% on that) and just recently started Effexor as well. He has more trouble with noise exacerbating his symptoms (rather than light), and with two young children, that’s a challenge.

So this is just some of my thoughts as a MAV spouse:

What I hate about MAV:
It has turned my fantastic, smart, intelligent, witty husband into an exhausted miserable dopey zombie
Many friends & family don’t understand
We can manage… but if I get sick as well, it’s a nightmare.
Illness is expensive, horrible & time consuming
When do we get to be a normal family again and go on normal holidays? (flying is a definite trigger for him)
Every day, week, month… it’s a struggle

How we cope:
I have some family daycare for the kids = helps me stay sane
I talk to a psychologist - really need that
I read articles about caregivers and it reminds me to look after myself in order to look after everyone
I am behind him 310% percent. We WILL beat the MAV monster
I go with him to all specialist appointments, two brains do seem to work better than one (dizzy) brain

So are there any other spouses out there? How is it for you? How do you cope?

Hey Belfie,

I’m not the person to ask as I’m single at the moment but I have to say, when I’m really sick like I am now (not today, today is a good day! :slight_smile: ) I actually prefer it that way. It’s just easier to deal with this on my own and not drag a partner into it. It has taken a long, long time for my friends and family to really ‘get’ what I go through (and I’m not convinced all of them really do yet) and they are now really good about being there to support and help me but also knowing that I may have to cancel fun stuff at the last minute or not make plans at all.

I was talking to a couple of colleagues today who also have migraine (although not as bad or chronic as mine) and we shared that ‘no-one else really gets it’ look - that people think we’re shonks or just have a ‘nasty headache’. Sometimes it would be ‘easier’ almost if both partners were migraineurs - at least they’d understand! So I think you’re a pretty amazing spouse to have got on board so quickly with all this and to be working out coping mechanisms for yourself as well. Good on you!

Belfie, I just want to reiterate what Vic said about you being an amazing spouse. I’m the MAV’er in the relationship and after nearly 40 years, my husband, bless him, is only just getting on board the MAV comprehension train and I want to say how very hard it is for a sufferer of MAV to be misunderstood by their nearest and dearest, so kudos to you. Your support is truly invaluable.

Best wishes to you both and good luck

Brenda

Belfie, I’m not a spouse, but I just wanted to say a big THANK YOU to you and the others like you who’ve supported us through this. For me, I don’t know how I would have coped without my lovely man! It takes a special person to cope with what can be a life changing condition so thanks for your support!
Best wishes to you and your family
Tracey

Belfie,
I just want to say that it’s quite possible, dare I say probable, that you will get your husband back. ONce things settle, and he gets on a medication that truly works well, things will get much better. Nice to see you being proactive on the board. :slight_smile:
Kelley

Hi

I’m a mav spouse aswell but I’m writing on her account as she asked me to read this. I understand where your coming from I have spent the last year worrying about susie. When she got this January last year and it took our life away. When she got this we had a 4 month old little boy which is now 17months old now.

She ended up moving into her parents as my shifts at work ment I couldn’t b there enough to help. I found it really hard as we didn’t know what was happening and used to get very frustrated at her thinking it was all in her head. Reason for this is because she spent all day online trying to find out what’s wrong. She went down so many lines before we found mav.

Once she moved into her parents I did struggle as I couldn’t get my head round it and what was happening. I feel bad now but we had it hard as her dad is quite an old school man who doesn’t believe in head conditions. I wasn’t there enough for her and if I can say one thing don’t do that it makes things worse. It took 9 months to get her well enough to come home. I hated it as I felt like I lost out on 9 months of my lads and wives life.

What I’ve learnt from this is people don’t understand and you always have to explain it. You need to be supportive with them as susie gets very negative at times and I need to perk her up. Don’t try and keep it in and hide it as ultimately you will suffer more and you can’t help them. Try not to take your frustration out on them as they can’t help it. This is something I still struggle with at times. She is 80% back to being my wife again and I’m hoping we can get back to family life again.

Hope this makes sense and gives you another view of a mav spouse sufferer.

I am the wife of an MAV’r. He (WE) have been through most of the same issues, DR’s, misunderstanding as posted on this site. Reading about others going through the same hell really helped me out of a very depressing time when my husband was going on 3 months of basically being disabled. The drugs prescribed by the neurologist made him virtually a zombie because he was either sleeping 14 hours a day or was in a fog when he was “awake”. He decided that the drugs were worse than dealing with the MAV. Eventually, he was laid off from his job because of so much missed time. That was 3 years ago.

His episodes have gotten less severe and less frequent since his first horrible episode approximately 7 years ago. I took him to the emergency room because I thought he might be having a stroke! But he still can’t hold a regular job because it’s hard to know when the next bout will come and whether it will be one that he can work his way through in a day or two or if it will be a week or more before he is back to “his normal” which is around 80% on the best days. He is in the midst of a bad bout right now that we think we have narrowed down to use of Splenda which is a fairly new food for him.

Anyway, I wish you all luck and patience. It is very hard for people that are not really experiencing it to understand. They think there must be a cure, or a drug or SOMETHING that will make him snap out of it. I only wish!!!

I’ve never used Splenda but was interested that you possibly attributed your husband’s latest episode to it, so I looked it up out of curiosity. Yep, maltodextrin would affect me too! Hope he recovers soon. You make a lot of points I can relate to.

Best wishes

Brenda

Belfie, I just realized that your post was asking other MAV spouses how they cope-not necessarily asking for life history. :? I guess one way I cope is to come onto this board every now and then to see if there is any new hopeful information on treatment and to see how people are doing.

I have an excellent full time job (thank goodness)which gives me something else to focus on and eases the financial worries of having an unemployed spouse. My daughter is grown up and married so I don’t have the stress of taking care of a young family, as you do. I can cope pretty well when the “bouts” are the 1-4 day type. I admit that the several weeks to months episodes can make it very hard to keep a positive attitude… Thank goodness those are becoming fewer and farther between. At those times, I will go out to dinner or to a good friend’s house just for a change of scenery. After 30+ years of marriage, I’m going to hang in there with him. He certainly didn’t ask for this to happen to him and I know that he would be with me all the way if things were reversed.