I’m so, so sorry for complaining again, but I simply cannot see any light at the end of my tunnel, and you good people are the only ones who understand. I try so very hard to be positive; I read the success stories, keeping my searches to uplifting subject matter, but I can’t ignore what is happening to me—it’s just impossible to do so.
I feel so terrified, like a child. The only thing that brings me any peace is my husband holding me, and that makes me feel silly, because I used to be so strong.
What fills me with absolute terror is that—from a very logical stand-point—if I keep progressing as I am, I’ll be bed ridden and in a wheel chair soon. Every day—and I mean every day—brings new symptoms, along with a progression of my pre-existing symptoms. I won’t go on again about all of my symptoms; I harped on those enough in my first post. But it’s simply a matter of time, provided this doesn’t stop. And why would it? It hasn’t in 9 weeks.
I kept thinking this would go away, and then my thinking went into the “this has to level out” arena. Now I can see that things are spiraling, and they might not stop…ever. So, sure…this might not kill me, but I’m so scared that it’ll take my life, in every other capacity. I already feel like my children don’t have a mother, and I’m certainly not any kind of wife right now. I’m only 31; might this mean my husband has to care for me for the next 40 years, and my children will watch their mother wither away?
Again, I’m sorry. I probably sound like I’m throwing myself a pity party, but I’m just really hurt, and sad, and scared, and sometimes I’m really pissed off.
Know exactly how you feel, have been there myself. It was worse when this started, the first year was a living hell. Things did improve in time and they will for you. 9 weeks seems ages I know but it isn’t that long in MAV terms. I felt just the same when I had a big relapse and only when I started taking nortriptyline did things start to improve a little. You are not on any meds right now. The meds and time are two things that are in your future which should see you, even if not totally out of this mess, a lot better than you are right now.
Take it a day at a time. Focus on anything you can to do to take your mind off it. Think of all the people in the world in a worse situation than you and believe me (even if it doesn’t feel like) there are many. Do whatever you need to do to get by and make sure you try and see a neurologist who understands MAV as soon as you can x
Thank you, Jem. You’re right, I know. There are many people worse off than me, and I certainly do keep that in mind. Hell, as much as I hate this, I’m just thankful that it’s me going through it and not my children or husband.
Aside from feeling like absolute hell, I think the guilt is really getting to me. My children and husband are so supportive, and they never do or say anything to contradict their love for me. But what hurts the most is that this isn’t my first, or only, medical problem. My poor husband and children have always had to keep Mom’s health in mind, and I feel like such a hindrance to them. All I want is to be a great mother and wife, and not being able to do that makes me feel useless. The idea of missing out on my children’s lives, or my marriage, is just too much to bear.
As for your encouragement (even though it may not seem like it right now—when I’m at such a low level), I do carry it with me. In fact, when I’m doing really bad, it’s all I have to cling to, because (as you know) it feels like this hellish ride will never come to an end.
As for now, the doctor wants me to try the diet, and in the interim, he’s making an appointment for me with a really good Neurologist who specializes in migraines. But I’m afraid to see where I’ll be at the end of the two month diet trial.
I go through the same feelings of guilt. I don’t have children though. But remember that you can’t help all this and if it was them suffering you would be there for them too. The best thing you can do for them, as hard as it is I know, but try to at least pretend that your fighting spirit is still alive and you are still you in your personality, because it will only upset them if they see you upset but can’t help you.
One of the things I like to try to think is that this has happened to me for a reason, even though it’s hard to know why. If you think that there is something you are going to learn from all this or that this is taking you somewhere your life was meant to go I think that helps rather than viewing it as needless suffering.
I also think of people either famous or in history who I have heard of that have suffered terrible disability but have still managed to find a purpose in their life and achieve things.
These are just some of the thought processes I have found help me in the years I have had this.
I promise you it will get better than it is right now even if you have ongoing problems, it will improve x
MAV certainly gives you perspective, doesn’t it. Funny enough, I was struck with health problems at such a young age that I never really had time to take my health for granted; ill conceived notions of invincibility, and all that jazz. But yes—this has given me even more perspective, and even more appreciation for good health.
I do try to stay strong for my children, or, at least keep the appearance up. The unfortunate times are when I can’t hide it, when the symptoms get too strong and there’s no masking it. But I do try. Trust me, when my symptoms allow me room to breathe, I try to resume as much normalcy as possible, for my children’s sake and my own.
I really appreciate the time you’ve taken with me, and the words you’ve shared. It really does help, and I want you to know that. I know we all feel like crap, and sitting in front of the computer doesn’t help matters. But you’ve taken the time to help me, and I thank you for that.
X
I am glad to be able to help in any way I can. I just want to share anything I have learned with other people. This thing requires you to dig deep and show patience that you didn’t know you had. My words aren’t much I know but at least you know you’re not alone and other people have trodden the same path x
What you are feeling is normal for someone dealing with an illness that affects their life in such a major way. It sounds like you are seriously stressed, and that is totally and completely understandable. Be gentle with yourself, and forgive yourself - you did not choose this, and you’re not just being lazy - you are sick. I lost everything when I first got sick - friends, job, career path, hobbies, independence, everything. It got to a point where I could not handle it myself and as much as family was there to support and give hugs, they couldn’t understand and I felt very disconnected and empty. The best thing I ever did for myself was to stop dodging around my doctor’s advice to see a psychologist and accept that I needed outside help. I’m not saying it’s the right choice for everyone - it’s not, but if you feel like you have hit bottom and you can’t find your way out, being open to the idea may help.
Here are some basic overviews that might be of interest to you:
Thank you, Dizzy for life. I’ll definitely read the articles you sent me. And thank you for sharing your own feelings.
I know that it’s natural to feel swallowed up by an illness that robs you of so much, but boy, that doesn’t make it any better. Never the less, all of your support makes each day a little easier, and I’m so grateful for it.
I feel your pain! I am a mother of 2 young kids and have been battling this for going on 10 years. I have times when things are good and times when things are awful…like the past 6 months. Keep your chin up!
Hey MgStegner, I know how tough it is like you do, and too am determined to persevere because some things DO help - mainly avoiding caffeine, inflammatory foods and eating magnesium, B2, CoQ10 - and Petadolex brand butterbur. Gabapentin has helped me too, but I think it might be giving me acne and bloating me. I don’t need problems! ha What if any supplements and medications do you take? Do you find certain foods/drinks make thinks worse for you? Any insights would be much appreciated from someone who has been functioning with MAV for a while…I’ve had it for three years now. xx
I wish I had some really good insight, but I’m sort of at a low point right now and have been having a rough 6 months. I’ve noted over the years that certain foods and alcohol are major triggers. For years, some months I could handle a few drinks, but over the last 6 months even one sets me off and I have to go to bed. Another huge one for me is MSG and soy, which is a major bummer because Asian food has always been my favorite. And MSG is so hard to avoid because it is put in so many things for added flavor and not always listed properly on labels. Almost all dressings have it, so even having a salad at a restaurant has become a no-no. Another trigger for me is exercise. I have always been a big runner…my favorite form of stress relief and alone time…but over the last couple of years it started to make me feel horrible once my run was over. I quite last September when I just couldn’t take having to come home and collapse on the floor for 30 minutes after every run until my head calmed down a bit. Even a medium paced walk sets me off now. Currently, I am trying a low dose birth control to see if it will help with the migraines with auras I get right before and during my period, and have been on a calcium channel blocker called Amlodipine for about 2 1/2 weeks to see if it helps. I do think I’ve been having more good days than bad recently, so something seems to be working. However, I went out to eat with my husband last night and something in my dinner set me off, so after about an hour the lights and loud noise in the restaurant just became too much. With that said, I find that I usually start feeling bad around dinner time and pretty much just have to put up with it until I go to bed. I don’t know why that is. I have been taking a low dose of Klonopin at night for a few years now, which fortunately and unfortunately has been my one true form of relief because it helps me get a good night’s sleep. I’ve also been on Lexapro 10 mg for over 4 years now. And like you, I take magnesium, B complex, and butterbur on days when I need it. The one last thing I have never tried is to come completely off of caffeine. I have, however, switched over to green tea…one cup in the morning, and one in the afternoon if I feel like I need a boost. I may try to cut it completely out starting next week and see what happens. At any rate, so nice to talk to others who are battling this same thing. My husband is very sweet, but I can only talk about it so much with him because he gets very frustrated as he just wants it to go away. Good luck to you and keep me posted on how you’re doing!
Hi
I can completely relate to everything your all saying …ive been in living hell for 14 years now. Im currently under the national hospital for nurology in London and have tried various differing drug trails. Nothing has worked
Around a year ago i started to get depressed about it all and suicidal
I was sent to see a therapist who explained that we are only human , we don’t have a infinite amount of resources to draw from…like a bucket that’s slowly being emptied. .i lost all my hope in of finding a cure.After 13 years my positivity has run out.
Although it helped to talk about it im still depressed.
Ive been referred on for something called "commitment and acceptence therphy.
Apparently this is gonna teach me to accept that some things you can not change.
I will keep you posted.
I want to tell you all chin up but it would be unfair as i cant myself.
Ive had to give my partner all my tablets to lock away as i cant trust myself tonight…i really cant live like this anymore but know i cant let it.beat me …im not a quitter
I’ve been there many times too. Try to find something you love and do it. I horseback ride now that i have my symptoms under control with gabapenin and it’s really important to me. I want to do some good in this world even though I got sick, and that’s something I remind myself too. Try to live for someone or something else.
We’re not in excruciating pain most of the time (although I know how bad the symptoms can be) -and that’s what I tell myself. I know that this is a very hard problem but if you get really desperate try to avoid all artificial lights during the day - that was my backup plan (like moving to some place in the woods with candles!) but right now Im doing ok with the artificial lights because i’m on gabapentin at 200mg 3x a day and taking magnesium glycinate 2x a day at 400mg and also B2 and 400mg.
All of that together makes me not dizzy and I can function almost as well as before MAV hit. Have you tried gabapentin?? It is the only drug I could tolerate and that actually gave me back a sense of stillness-but only at this low dose. It may be having some side effects perhaps somehow, but I dont know what they are and I’m okay with taking this drug to live my life…whatever the sx they are ones I can tolerate.
I feel pretty much like myself on this drug - if not a little bit more open to people and less anxious. The main thing is to remember that mav is so bad but it also is a gift in a way because it makes you realize how trivial a lot of things are. Since getting mav, I’ve learned to value the times I feel OK much more than I ever did before I was sick. Even when sick, I think I’ve learned how tough I can be to push through it and I feel stronger for it. We’re very strong people to have survived these symptoms and we can do it.
Medicine really helps too along with the supplements. Try to eliminate caffeine and other high tyramine foods that increase the symptoms…nuts are a big trigger for me. Anyway, it’s also great you have a partner. This hit me so young… I guess I look at this like it’s kind of like someone who is blind or deaf- you learn how to adapt and move on with your life.
Our problem is invisible but that’s the way it is. Remember there are lots of other people who have mav and we all have to support one another. I think it’s nerve damage from a virus. Perhaps one day doctors will understand it better.
I do have a glass of wine or beer at night since that helps me chill. Try the gabapentin at least if you haven’t already… xx
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P.S. Do you have a pet, Sarahat? Sometimes dogs and animals are the most therapeutic things to be around. I know that being around horses is hugely helpful to me. I want to get a dog (like a rescue dog- no pun intended!) next year if I can.
PPS. I sometimes think becoming a bit more spiritual helps too, if you’re open to that. I believe that there may be a God and I try very hard to remember how much Christ suffered on the cross and how much there are other people suffering much worse than I am. I try to be grateful despite this problem. It’s hard some days (VERY hard) but I try anyway…
Hi
Thanks for your reply.
Im on high dose B2 for the next 3 months ,then trying oestrogen cream then another drug.
Ive tried various drugs including Pitzotifen,fluranazine,topomax
I tried magnesium and the exclusion diet.
Not tried gabapantin , maybe its not recommended to me because of my other health problems?
Aside form MAV i have arteritic feet,a cardiac problem and hypothyroidism.Im strong and have coped over the years but ive got to the end of bucket of paitience.
I cant look at it as a gift ,im probably about to lose my job as im off work more frequently with it now.
this all started when i was 29 im 43 soon…over a decade and im no better.It took 8 years to get a correct diognosis.
i think because it is invisible no one believes me or understands what a huge impact it has .
im hopeing the therpy ive been put forward for will help.
I have a cat who i adore but when the attack strikes my hearing is supersonic and even the funny crying he does at the birds goes straight through me !
I try to think of others and think that im lucky but the impact on my life is so great i cant hande it.
I did beliieve in God but I dont anymore . Ive tried to do good in life ,used to bake cakes and sell them for charity every week etc but i have bear given to big a cross to bear for too long …
Hi Sarahat, I’m not having a great day either and just did something incredibly stupid with a guy I had dated and basically took it out on him again. Anyway I know what you mean about God and everything. I try to keep pushing on. I know that gluten seems to trigger stuff and gabapentin does help me - but eating trigger foods bring some pain back. Gabapentin really helped though. Why not just try that before getting too much more freaked out? Even the lowest dose of 100mg 3x a day really cut the dizziness and stuff for me. Have you tried upping magnesium to 800mg a day (400mg 2x a day) - that seems to help me more than 400mg. I take magnesium glycinate. B2 may or may not help me as well. I don’t know. xx
Its very hard for the people that love us , my partner of 18 years was so stressed at how upset i was today he rang my GP…my mum rang in the middle of a crying fit…my gbf and my bff rang …They are all lovely …if love cured vertigo i would be well!! I let my vertigo get to me and in turn hurt them all.
if this bloke likes u he will forgive and understand.
Im under the nurology hospital so think i will discuss gabapatin with them…tried so many pills i rattle!
I tried cutting gluten for 6 months before and it done nothing. I get attacks every 35 -37 days so im on the hormones to blame train right now . This attack im in the middle of now is unscheduled\extra
In 8 weeks I’m gonna try estrogen cream.
Thanks for replying i don’t think anyone that has never had this has any idea how dibilatating it is
I totally know how you feel Sarahat. Yup. I went riding today (I lease a horse) and everyone thinks I look normal but everything is harder with MAV (I have only told a few people in my life about this problem…hard to mask it actually but I have tried in the hopes I’d get better somehow through drugs or diet…)
Mainly I have to get over the anxiety like that guy who wrote above about how he has been OK and actually done things he might not have with the MAV… I do think that MAV has opened me up to people in a way I never used to be. I just want to live life as much in the ‘moment’ as possible now…while sort of planning for the ‘future’ (Although I really dread the idea of not getting well to enjoy those days fully).
I am feeling OK on gabapentin and magnesium but today was worse because of maybe something I ate the day before. My sister swears she gets worse attacks (she too has it a little ) from gluten. But I don’t know. Yes I do take this problem out on some people, mainly my family and guys I’ve dated but I’m trying not to do that anymore. Half the time I feel like I’m going crazy with this problem. It’s hard not to be feeling like the majority of the world…but I do realize that other people have problems that are worse… my friend has Meniere’s disease and he gets REALLY acute attacks of tinnitus and vertigo. I’d take the swaying I think over roaring tinnitus…
My sister deals with this problem of MAV a lot better than i do. She has it a little less bad, but I am a ‘type-A’ personality and was a perfectionist before so it’s just really hard not to be striving to be perfect anymore. I do think that it forces us to take better care of ourselves overall, though I do loath the idea of stuffing myself full of pills. Will try the butterbur again tomorrow to see if that helps things feel better… I also read something about alpha lipoic acid helping at doses of 600mg/day for peripheral neuropathy. I’m curious if it might help our nerves recover in our heads…
You’ll get better I swear - you just need to find that right mixture of drugs and supplements now. Try the gabapenin if you haven’t already. It’s good. I agree that no one gets this problem unless they have it though…including therapists and doctors. It’s an alternative reality we experience. I’m doing a lot better than I used to, but I do think drugs alter my personality a little. Gapabentin is the only one that actually had a good effect on my personality though. Definitely an anxiety reducing drug. xx
Another interesting website discussing dairy/gluten/eggs and other food sensitives. In some of the comments below the article there are some interesting insights too. Lots of people have our problems : http://drhyman.com/blog/2013/12/27/5-steps-solve-migraines/
xx
next year if I can.