Maintaining a relationship and MAV

Specific Illnesses & Conditions VM/MAV
1

Hi,

So I’m feeling a bit crazy at the moment. After going through a rough few weeks for no obvious reason at all, I’ve upped the Topamax to 25mg in the morning and 50mg at night and feeling a lot better aside from the shit short term memory loss.

But what I have noticed is that, when I have a bad patch with this illness, I find it difficult to cope with any aspect of my life, I get so frustrated that I have zero patience, I am grouchy, I am grumpy, I am generally a horrible arsehole.

When I first got hit with the ‘big bang’ I was in a long term relationship. 4 months later my best friend died. 6 months after that I split up with my boyfriend. I just felt that having to deal with MAV and the death of my friend had made me re-evaulate life so much. I was older than my boyfriend. I decided I needed more stability, a more serious relationship in which I could see us settling down, getting married and having kids. I couldn’t see that with him, so I ended it, despite the fact that he had always supported me so well with this thing. I know that if MAV hadn’t developed, I would have stayed with him, and I would have been happy.

A few months later, I fell in love with some one else. (Ok, some might say this was too fast, but whatever, I say follow your heart.) We had 4 months of an amazing relationship, though things were super fast. We did everything in fifth gear. He is fantastic at looking after me with ‘my shit brain’. He reminds me to take my pills, he comes with me to the doctors, he really understands it all, he kind of ‘project manages’ my MAV, he calms me down when I get carried away thinking a bad patch will never end and he is a fantastic cook so cooks to my Dr S diet… BUT since I started getting the bad patches around the Olympics, on and off, things have started to take a nose dive. And I know why, it’s the MAV again. It’s because I can’t handle it. It turns me into an emotional wreck, it turns me into someone who can’t deal with anything.
As soon as I get a rough patch, I can’t take on anything, I think the world is against me, every thought is negative and I just can’t function. I pick fights with everyone about anything and of course, that includes those nearest to me. So again, I’m letting MAV beat up and destroy another relationship, take away another love.

I just don’t know how to stop this destructive behaviour. Has anyone else been in a similar situation? Has anyone else got any advice?
It’s not that either of these guys didn’t understand what I was going through because they did and do… He doesn’t make me go out drinking, he understands when I say I don’t want another glass of wine (I do SOMETIMES say that :slight_smile: ) , I get looked after, I get so much support from him… But the MAV over takes everything.

I guess a dizzy few weeks after being at 75% for a while takes away so much confidence and spirit from me, that no matter what anyone does, I just feel so angry with the world, so angry that I’m not who I once was and can’t be who I want to be.
And now it’s blatantly gonna ruin another relationship.

sigh

Sorry for ranting. I still don’t even know what I mean really. This Topamax isn’t really helping me make any linear or clear judgements. I’m going for a large glass of wine, f*ck it.

:cry:

2

Hi- sorry to say I don’t really have any advice, just that I sort of know how you feel. I have been having the same type of thing for a couple of years now and am just starting to figure it out. I just hope my husband doesn’t run out of patience with me!

Do you find that when it happens you know exactly what’s going on- you can see it starting- but you can’t do anything about it no matter how hard you try? That’s been the toughest part for me. It’s almost like an out of body experience where there’s no control.

Usually it only lasts a few days, and I’ve started telling him when I feel it coming on so he knows to give me as much space as possible and I really do my best just not to talk at all lest the beast come out. I know it’s hard on him but he’s dealing with it pretty well and I am very lucky to have such an understanding guy.

I’m sorry you’re having a rough go right now. I hope it settles down soon and you don’t have too many side effects from upping your topamax. I just started taking it myself. Be kind to yourself!

3

I can relate totally, I am just the same and then I feel so guilty about it too. I just fell out with my mum because I felt she was criticising me as she said I dwell too much on my illness. I sent her this article as I feel she says so many of these things that you shouldn’t say to someone with a chronic illness:

I don’t really have any advice I’m afraid but please know you are not alone in this by any means x

4

Hey. I’m sorry that things are so “crazed” at the moment. It sounds like you’ve had a rough time for a while - losing your best friend, ending one relationship and beginning another.

Any one of those things is enough to cause you to go through a decompensation period - which is when all your symptoms seem to ramp up. I have been told by several of my ENT doctors that our (us lucky MAVers) brains adapt as best as possible with medicine, lifestyle changes - all those things we do help ourselves get better. The brain compensates (as best as possible). However, the brain will return to the old way of doing things when it is stressed. Stress can range from light to severe - if you have a busy day or a bad day, you might notice more symptoms at the end of the day but a good night’s sleep will reset you for the next day. If you have a cold your brain might decompensate for a few weeks. The greater the stress the longer the decomp period can be. The more we can adhere to the positive changes that help us the faster we may return to feeling our level of normal (or compensated again). It doesn’t help that when we feel awful or are in a bad patch, we tend to adopt behaviors that do the opposite of getting back to our good level. I know I do :roll:

You have been through 3 big changes in a short amount of time. It would seem that your system/brain is working on being compensated but it slips into the decomp phases (bad patches) from time to time as you heal from the loss of your friend and the ending of the first relationship & as you adapt to being in a new relationship.

My doctor’s advice was “Try to do the positive things you know to do and be kind to yourself”.

About the grumpy part - I find myself doing that as well. It sucks. You try not to but… Two years ago I wrote a letter that briefly outlined what MAV is, what the symptoms are, and how it personally affects me. Then I sent it to each of the people who are important in my life. I stressed that I might look normal but underneath I’m not. Most of them were happy to read that and they understand when I have to cancel things or if I get grumpy they give me a little bit more leeway - especially since I do apologize later. I hate being this way but it is my new normal.

Another thing that has helped is seeing a therapist who is trained in helping people who are diagnosed with some never-ending medical problem. It really helps. You can take your grumpiness to them :smiley:

I’m wishing you well -
Molly

5

This may sound like an inane question MM but have you actually told your BF how you feel right now? I mean everything you’ve shared here? He sounds such a lovely, reasonable sort of a guy I’d be surprised if he wasn’t devastated to know what’s running through your mind. It almost sounds as though you’re too afraid to go there, afraid to be brutally honest with him. In fact, it sounds as if you’re afraid of yourself. Please don’t be. It’s just part and parcel of MAV and the frustrations it brings, not to mention SEs from the meds. And trust him not to be dismissive or critical of your feelings right now, trust him with them. Don’t assume he’ll do this or that, he may just surprise you.

If you’re saying you’ll push him away anyway if you go on like this, what have you to lose? If you could just be totally transparent with him, he sounds the sort of guy who just might be able to see you right through, and out, of this extremely distressing MAV run. And if he does react how I think he will, then I think your relief alone will go a long way to helping you feel less alone and less threatened by what MAV will do to you again.

All that said, of course I get your fears and frustrations I’m sure we all do and I don’t mean to belittle those at all. And it’s OK to have bad days, bad times, but we have to be pro-active as best we can sometimes so as not to be swallowed up and overwhelmed by it all.

This IS a passing phase MM, even though it probably feels like the end of the world. You won’t always feel so low or so beaten. Please try to remind yourself of that, even if the words seem empty. You’ve had a tough summer and your coping resources are probably all used up which is why you’re feeling everything so acutely.

Relationships can be tricky at the best of times, without the added complications of MAV. Only you know for sure what you want out of your present relationship. I genuinely hope you find a way to sort all this out. And please take the advice that you have so wisely given to others recently - be kind to yourself.

Brenda x

6

I completely understand ur situation! the daily crap we go through makes us feel like the world is against us. I think many of us have anxiety disorders that predispose us to migraine problems like MAV. It has caused a bit of stress on my relationship, but I FORCED myself to stop the stress because I knew where it came from and how bad it was. Have peace because you will get better soon! :smiley:

7

Hi. I think when we are going through a bad patch it takes all our energy and we do become very grumpy and short tempered with our partner. The MAV gives us hassle and sometimes we just cannot cope with any more from anyone.Sometimes( when I feel very dizzy)I can’t be bothered even speaking. I am just too tired! Your partner sounds like a lovely man and I’m sure he will continue to support you through this. X

8

This disorder has made me suffer from anxiety issues from the day it started. During bad bad days I fall 100 steps back. The bad days just come out of no where for no apparent reason meaning even though sleep pattern has been good, stress levels have Been down, no changes in medicines or doses, selected diet - still the bad days come out of the blue and I get screwed for weeks. It’s an awful illness. My family talks me out of negative phases always and thats what keeps me strong. I get drastic negative thoughts especially “what if” or “how will I” type thoughts and that drives me insane. But once I’m back to baseline after sometime, life takes its usual course and I’m sure u will b able to cope and b back to baseline soon. Good luck. Remember we are all here for one reason so plz feel free to tell us more t u want to let it out to fellow mavers who would understand everything that u say. Hang in there. I

9

I was always a very calm person - not too much stressed me out & I coped with a demanding job & sudden loss of my husband (10 yrs ago). However… since MAV started (2yrs ago) and severe anxiety hit I get very ‘uptight’, grumpy & short tempered esp being in a stressful situation (long car rides, supermarkets, etc). I think it’s because mav is with us 24/7. Taking .5 Ativan tab helps calm me down but I’m thinking of asking my doc for maybe a low dose SSRI or SNRI to add to my meds which maybe a better option than the benzo (taken infrequently). What I’d really like is to get the ‘old me’ back again but that’s just wishful thinking! Am fortunate to have an understanding hubby but sometimes I test his patience!
missmoss - things will work out for you - maybe show your partner these comments & he’ll know you’re not the only one to struggle with these grumpy days and if he loves you he’ll want to support you.
Barb

10

A massive heartfelt THANK YOU to you all for your replies…

I have shown my boyfriend the thread and read them all 10 times myself…

Going through a crap patch still, just had an eye aura so will reply over the weekend when I can find the energy, but wanted to come back here now to say thank you x 100.

xxx

11

Hi Everyone,

Now that I feel I’m through the shitty, dark, tunnel of despair, I wanted to write to say thank you to everyone for replying to me in my hour of need.
I’m sure everyone who puts an SOS out on here is agreed that it’s extremely comforting to be able to log in here and see responses and support from faceless friends offering advice and an ear/pair of eyes.

Unfortunately, despite knowing that everything was right in all that you all said, I was already an out of control one way train spiraling into a big fat train wreck of a crash.

Flour Girl- as you said, I could see it starting like you can, but even writing it down here couldn’t stop it happening. There’s literally no control. But what you suggest of giving your bloke a warning and asking for some space is sensible. How are you doing on the Topamax now?

Jem- your link was very apt. It prompted me to have a big fat whinge on my facebook to all my ‘friends’. I’m not sure it endeared me to any of them but it made me feel better :slight_smile:

MsMolly- Fellow MM! What you say about stress and decompensating makes a lot of sense. I did a similar thing to your letter but do you find that some friends seem to forget how you feel some way down the line and you need to remind them?? That can be very frustrating… I did have therapy when I first got dizzy. I would like to take it up again but it’s so bloody expensive! £50 an hour? Ouch! Thank you for replying to me.

Brenda- You are always spot on everytime I post something- I hereby proclaim you my Fairy Godmother :slight_smile: (DizzyAnne too!) But in all seriousness, thank you. You were completely right.

What happened after I posted this? I went even more crazy. As crazy as I’ve got. I don’t think I could handle feeling so out of control and frustrated with the dizziness and the lack of control and the loss of management of the MAV monster, and I just put the brick walls up big time and pushed him out. I decided he didn’t care enough about me and I decided we would be better off splitting up. Looking back now, it was crazy. I can’t actually fathom how I felt that way. It’s not how I feel right now at all, it’s the opposite. It was like I was someone else and had to wait for the dizziness to slowly calm down again, and me to feel more normal, for my MAV brain to go back to baseline, before my personality and what I wanted to return. It really was that extreme.

Today Mr MM described that time like this; "I don’t consider last week to be part of our relationship – it was so extreme that it was like somebody had stuck someone’s else brain in your head.

So my concern is not about our ‘regular’ relationship per se – so you have absolutely nothing to worry about."

Now that my dizziness seems to have lifted and gone back to baseline, so has my personality but now Mr MM is obviously worried that I will flip and go crazy the next time I have a bad patch… It makes sense sense. But I will be doing everything in my power to stop that from happening. I will be taking Ichbindarren’s advise to ‘force myself to stop the stress’. I think I have learnt a lot from this ‘episode’, and I don’t want to do anything that will compromise our relationship again. Having said that, if I do have another extreme bad patch like this, (though hope not to), I don’t want to cope on my own… So hopefully this time we’ll be able to know what’s happening, talk it through instead and I can just have a bit of space.

I am concerned I’m just a crazy old bint though. Maybe I need a psychiatrist more than anything else?! I honestly have thought I might actually be going clinically insane at times. But it’s just the MAV right?

Lastly, this rush of extreme craziness did coincide with upping the Topirimate… Does anyone know if this could cause such an extreme mood swing??
I am loathe to reduce the Topirimate as I KNOW it is helping the dizziness- last Sunday I actually had… A DIZZY FREE DAY!!!.. but I don’t want these crazyarsed mood swings, and I can’t keep my eyes open right now.

Nabeel- It’s great that your family are so supportive. Thank you for your luck and kind words.

Barb- Thanks for your wise words and encouragement for me to show my partner these posts.

I do think it was beneficial to show him that I’m not just crazy for crazy sakes, although I did want him to know that I don’t want MAV to be an excuse for my behaviour you know?? I feel quite strongly about that actually- I don’t want to make him miserable because I am sometimes miserable you know? Thats not fair.

So, I can’t 100% say it won’t happen again, but I know that if it does, I’m better briefed and will know what’s going on and not let it jeopardise the one bloody decent thing I have got in my life :slight_smile:

Once again, thanks to everyone. You are all bloody fantastic xxx

12

All I can say is that you sound totally normal to me. Certainly I and probably most people here can relate to what you’re describing. It is probably true of many people, even those who don’t have MAV. Definitely increasing the topamax could have been a contributing factor for you to feel worse. I have heard it can affect mood as one of its many wonderful side effects :wink: . However, I really do think that the frustrations of having a chronic illness can lead anyone to feeling like that and going through the cycles of grief, despair, acceptance, anger, bitterness and hope. I am glad your partner was understanding and supportive, that’s very important to help get through it x

13

Welcome back to baseline missmoss

14

— Begin quote from “missmoss83”

Today Mr MM described that time like this; "I don’t consider last week to be part of our relationship – it was so extreme that it was like somebody had stuck someone’s else brain in your head.

— End quote

He’s a keeper! :smiley:

MM, I think the fact that you are aware of your thinking/behaviour and that it is MAV related is half the problem dealt with. It’s a perfectly rational reaction to an extremely shitty situation. The fact that Mr Moss ‘gets it’ is about another 40% covered off. I think if you can work on some techniques to manage your anxiety and stress about this shitty condition and then use those techniques to modify your own outbursts you’ll be all the way there.

Hang in there!

15

Keep well!!! Keep calm!! Glad you’re back to baseline x
Anne x

16

Oh MM, what a lovely thing to say. Thank you. I’m tickled pink! :smiley:

It’s so good to know you’ve come out of your awful slough, even better that you feel a little wiser and more prepared. That’s what it has to be about really, always learning, always making good use of every experience - it all goes towards making the journey easier. As they say, knowledge is power. And every scrap of info is useful when trying to decipher our own MAV puzzle.

Hope the sleepiness abates soon and you see the desired results from the Topirimate. Good luck with that.

Brenda x