I’m not living I’m just existing, just writing this post is going to increase my symptoms but I just need to talk to someone. I need to let off steam. My husband and kids have just left for another day out that I cannot go to. I know my son is going to feel guilty for having a good time while I’m not there and when he comes home he is going to get upset and say that he thinks I’m dying, that this “thing” is going to take me away. He remembers what I was like before this all happened on 5th June 2013. He remembers a mum that used to take him to the park and who used sleep with him in the garden in our tent. He gets upset because I’m not the mum he used to have. He is only 7. I’m such a burden to him. He shouldn’t have to feel this way, he is just a kid he should be enjoying himself, not worrying about me. My daughter, she is three, she doesn’t know any different. She doesn’t remember any other way and it JUST BREAKS MY HEART that my two beautiful children are not getting best of me. I have not slept in my bed with my husband for over a year, I sleep upright on the sofa downstairs. He is a good man, between him and my mum they’ve managed somehow to hold us all together and manage our home and the childrens school lives. I hate that this thing isn’t just affecting me. I can’t even talk to my friends because concentrating for more than a few minutes at a time will throw me off for days. If I go in the car, even for a two minute trip it takes me weeks to recover.
I have MAV, it is constant. I’m a prisoner in my own home. I cannot walk for even a minute without my symptoms increasing massively. My motion intolerance is awful. I spend my days on the sofa watching the world go by and life going on but I’m not part of it. I don’t think I will ever get better. I don’t see how I could when my symptoms are so severe. At my worst I could barely lift my head off of my pillow for four months. I sometimes think it would be easier for everyone if I wasn’t here. I feel like I want to go because I’ve just had enough but I can’t leave my kids. I’m not that selfish. So I’m stuck. I’ve lost a lot of friends who turned out to be fair weather friends. A few have stuck by me and thank god for them.
I’m on 80mg nort and 450mg Lyrica and I have a feeling that the next increase will be my last on these medications as I don’t think my specialist can increase them anymore. I’m terrified, what if I go back to being bed bound. My anxiety is through the roof and my depression is not good. I’ve put on four stone. I think it’s the Lyrica. I’m now nearly 20 stone, I can’t exercise at all. I tried an exercise bike but even the motion of that was too much.
I just don’t know what to do anymore. I just need to feel like there is a light at the end of the tunnel. I’m sorry for my pity party. I’m just desperate
Have you trialled any other medications? Have you made any lifestyle changes and tried the migraine diet? I don’t think having especially severe symptoms means you necessarily have a smaller chance of recovery. Please don’t give up, I can assure you there will be a way out of this, and that others in a similar position to you have felt the same way and gotten better. Plus, research is going on all the time and better treatments may be available sooner than you think.
Thank you for your reply. I’m on Dr Surenthirans migraine diet. I know too much sugar or any msg makes me feel terrible. At the beginning of this my GP prescribed betahistine and stemetil. The stemetil helped with the nausea but the betahistine done nothing. I was on those for a few months, then went onto pizotifen which helped I would say minimally. Then last November Dr Surenthiran put me on Nortriptyline and lyrica (pregabalin). The lyrica settles me a lot and I’m really pleased with how it has worked. I don’t rock all the time now. I get odd days where I feel really good and I think to myself that if this was as good as I ever could feel then I could happily live with that. With the nort from 10-50mg it didn’t make much difference but when I went from 50-75mg I noticed a big difference. I could get dressed and get out of bed. However when I last saw the dr, he seemed reluctant to increase the nort above 80mg. So I’ve been stuck on my current dosage for 6 months and i feel like I need something strong to blow my symptoms out of the water like Topiramate.
It’s so frustrating playing the waiting game. I feel my childrens lives, the best bits are just slipping by and all I can do is watch. They deserve better than this. I have no question that what I have is MAV. So at least I know what it is.
that sucks that your dr. won’t increase the nortrip i think u can actually go up to 300 mg, i take 150 mg myself. im sorry to hear you are struggling but i feel exactly the same as you (except i dont have kids or a husband). who would want to live like this and what is the point. it sounds like you have only tried a few meds there are several more to try though so don’t give up yet.
No problem. Glad to see you posted this in the general forum. I’m having a really hard day myself. Had some caffeine this morning and tried to go without my Ativan at the same time. Now I’m dizzy, really queasy, and even have diarrhea. At times like these, I worry that there is something worse going on and my anxiety cuts in. Just took a .5 Ativan to calm the anxiety and nausea, hopefully. No caffeine for me tomorrow, unfortunately. It all makes me so sad too. As you can see, I really do understand. As Sarah said, you have lots of other meds to try, so don’t give up. I can’t wait to see my neuro in September to see if he will suggest anything else for me. Right now, I’m on Propranolol, but it hasn’t helped. Then again, I keep having some caffeine; guess I’ll have to give it up. Regarding the interim for you, like I said earlier, maybe try the low dose benzo temporarily?
Remember it is just a feeling. and it will pass, we don’t have to act on our feelings. You are not alone, don’t feel guilty, you are human, and are exhausted.
Can you find something to train your mind to focus, maybe painting. I did some chinese calligraphy lessons, which was very hard and such a struggle but I did start to enjoy the focus it gave me.
My doctor is happy to raise my nort to 100mg without question, not sure why they are keeping you at 80mg. Ask if he can add another med in. Some people are on many meds at the same time
To knock it out.
HI,
I am on nort, and have heard from dr s that he likes to only go up to 80mg. I am guessing you are on the migraine diet too? Do you know what triggers your MAV; is it hormonal as well?
I have a 4 yr old and an 8yr old so i can sympathise.
Friends who having not stuck around you since you got this MAV arent real friends anyway.
Where in the UK are you?; can you hook up with a fellow Mav-er if only for some understanding and to sound off to. Any chance of getting some CBT therapy for the anxiety?
Have you read the ‘heal your headache book’ and ‘the migraine brain’ book (to a lesser degree)?
Sorry for loads of questions. I’ve managed to keep mine under some control by working out the triggers and keeping a daily diary which i have kept for over 3 yrs now. I can identify my main triggers as hormonal as a result and sort of predict when things are going to be worse. I (sadly) dont eat much chocolate, cheese, drink much alcohol etc but would rather that then have the MAV.I am due to start on clonidine soon to try and knock the hormonal stuff on the head.i
do message me privately if you want to talk more, i know how hard this MAV stuff can be.
I’ve got a 6 year old and have missed many, many days and events. It’s awful to watch everything go by without being able to take part in it. Please keep trying and even change doctors if you feel like you are stuck or out of options. I’m finally finding relief after trying 5 preventives, 10 hormonal treatments, multiple dietary and alternative treatments. I’ve lost count of how many doctors I’ve seen. I’m able to do so much more now than I could before. I hope you are able to find a treatment that gives you relief - I’m sure it’s out there for you. Feel free to send me a personal message if you ever need to vent. I’m happy to listen!
Regarding the interim for you, like I said earlier, maybe try the low dose benzo temporarily?