It’s been a while since I’ve posted and I’d like to say it’s because I have been off having good old ‘MAV-free’ times, but not so much I’m afraid. Have been seeing Dr Waterston but feeling very down about how much he is helping - he basically just gets his prescription pad out. I suppose at the end of the day that’s all you can really expect of a specialist.
My main question to you all is, what is the point? Or rather, how do you all find the point - to going on, that is? I don’t want anyone to panic - I’m not suicidal. But I do spend plenty of my bad days pondering the point of hanging around. And the thing is, I know I should count myself lucky! Amongst all my fellow sufferers here I am fortunate in that I still have my job and am not bedridden. But the simple fact is, life just isn’t justifying itself. How can I have any hope for the future when I can’t plan for the future? I can’t date. I can’t have kids. I can’t travel. I can’t change jobs. I can’t take that writing course or start that novel. Every avenue I would like to take to make my life better, is unavailable. Exactly what is there to look forward to? And I have a bunch of family and friends that are so oblivious that they actually think I am fine. And I probably can’t blame them because seeing their bemused faces when I try and explain MAV just makes me feel so much worse that I no longer bother with anything more than a passing reference.
The other thing I’ve noticed is the ‘bag of rocks’ effect: in my mind, a bad day brings up all the other bad days in the past which I then project into my future. This equals a bag of rocks on my back - one rock for today, and then thousands of rocks for the days to come. It does also work the other way though. A good day (or a good couple of days) instantly removes the bag of rocks and I feel like ‘everything is going to be alright’ - now and in the future. It’s a bloody big roller coaster.
Anyway, I just thought I’d see how the rest of you manage to keep your chins up and find meaning to keeping going. I know many of you will have partners and / or kids which would help. I do have two cats who I love to bits but keeping me alive is a pretty big burden to put on them! I turn 39 tomorrow. That doesn’t help.
All the best to all of you - your courage in your struggles is an inspiration to me.
Firstly sorry to hear the Doc isn’t helping - interesting feedback as I was planning to trek down from the other end of the state to see him - if it’s just about prescriptions then I can managed that more cheaply working with my GP
I SO hear what you’re saying about the rocks - I feel that way a lot, and just as you say a few better days and it’s better but then whammo the rocks are back and you just get so down and frustrated - sometimes this all happens within the same day. Like you I’m not as badly off as some on this list - still reasonably “high functioning” I guess working etc but I miss feeling like “Me”. I worry that if I ever get back to normal that I might not notice cause I won’t remember how it feels. But I suppose the other thing is to not beat yourself up for not feeling as luck as you think you should compared to others. There are some days when this does help but the reality is that on days whe you’re in the complete dumpos with bad symptoms it really isn’t going to help that you know someone on this board is doing it tougher - it’s a bit like your parents telling you to eat your greens because there are children starving in africa - you know you should but some days you just can’t muster up that “I’m luck” feeling - and that’s OK, none of us are superhuman.
You do get so tired of the constant struggle don’t you. Like you I’ve put off a lot of things, and think very hard about making commitments that previously I wouldn’t think twice about because I just don’t know how I will be from one day to the next. You feel like you’re in one of those aircraft holding patterns, but with no prospect that it will be your turn to land anytime soon. Dragging one foot in front of the other day in and day out really isn’t an inspiring prospect for the next 30 years…I was 40 this year so MAV plus" mid-life crisis" means I send an awful lot of time wondering what is the point and not coming up with any enlightening or motivating answers (although also no suicidal).
I do have a husband, but it’s not necessarily that much of an advantage because as I try to just bosh on as much as possible, and am not leaking blood of have an appendage hanging off he tends to forget that I feel crap most of the time until I have a big hissy fit every now and again :lol:
WHat meds are you on / have you tried and what symptoms are worst for you?
Ah, Gabrielle, your post made me smile - and even laugh! You mentioned so many other things I would also have mentioned if I had thought of it! The holding pattern analogy is SO true, just waiting and wondering when I will get that opportunity to actually DO something positive and make all those steps that other people just take for granted. And not feeling like ‘ME’ - could so totally relate!
And the fact that people don’t understand. It’s such a lonely illness because as you say, there is no blood, or limbs missing, everyone assumes because you are up and walking around that everything is fine. I have tried to give people an idea by likening it to a headache. Not a serious migraine, but a moderate, painful headache. Now, if you had one of those all day, every day, for months on end, you would still be walking around looking normal, but you wouldn’t have been able to do your job well, made any big life decisions or anything much beyond the absolute minimum. I try to get people to understand that that is what it is like for us, all the time. I feel judged because I feel like people think I am healthy and can’t understand why the last year of my life has seen nothing really progressed at all.
I don’t mean to put you off Dr Waterston if you are meaning to come down and see him. I think I suffered from majorly inflated expectations because my PT therapist had basically called him the best in the state and I had to wait more than 4 months to get in to see him. So by the time my appointment rolled around, many days thinking ‘once I get in to see the expert, I’ll be okay’ meant there was a lot riding on the visit! By specialist standards he is more understanding than most but at the end of the day, he is just trialling meds. I want someone to understand and acknowledge what I am going through, and at $130 for 15 minutes, his is not the office in which to try and find this. By all means, I think you should see him if you are not happy with the person you are seeing at the moment - and he has some cool equipment that was successful in diagnosing my MAV when all other tests had come back completely normal, so that in itself was useful.
The latest med prescribed is Nortriptilyne. I haven’t started it yet so am medication-free at the moment. Epilim made me so anxious that I’m a bit scared to start. But I will - after my birthday - probably on the weekend. My symptoms are pretty much confined to the 24/7 fogginess factor. Plus dizziness when lying down. I don’t have a lot of the other symptoms others have mentioned on the Board.
Thanks for the support, your email could have been written by me (except for the husband bit, drat!).
I may well come down and see him at some point, but I don’t think I really need a diagnosis confirmation as based on this board and the neuro I’m pretty happy it’s the right one. I’ve had a CT, MRI, specialist eye test and hearing tests so if it was some other nasty it would have shown up, plus having had a few classic aura episodes the MAV/Vestibular migraine diagnosis was pretty straightforward. And I’ve only tried 3 meds (and not sure I can call 2 days on topamax and 2 days on amitriptaline a trial). So I should probably do some more work up here before I go for a med review. I just figured if I was going to go back to a neurologist I might as well go to one that specialises in the MAV area, as mine up here is just a generalist (albeit a pretty nice one with surprisingly good people skills - actually asked me in consultation how my symptoms were impacting on my life!!) And anyhow just come back from the vet to find the pooch needs about $3k worth of surgery (in Melbourne) so a second opinion (and that planned holiday) has slumped slightly lower in the order of priority.
What sort of equipment / tests did Waterston do?
Without this board I would be a lot more down though cause I know what you mean re the understanding/acknowledgement side of things. Lying down is also bad for me, but mostly because it seems to increase my visual symptoms (some nights it’s like there is a disco behind my eyelids with flashing lights and lava lamp style effects) although the dizzy is a bit worse as well. I spend the first 3 months ish after my initial attack sleeping propped up in bed…
As for husbands - mostly they are pretty good, but sometimes they can be hard work :lol:
I’m sorry to butt into your conversation, but I completely relate to you both. I turned 39 in May and continue to push through each day determined to get back some sort of normalcy. I was much sicker two years ago to the point I wasn’t sure how long I would be able to keep working full-time. Fortunately, I made it through the worst of it and have learned to manage to a reasonable level until I can figure out the magic combination to get me to 100%. I do have a husband and two teenage daughters who are blessings in my life, but the near constant nagging of their expectations, whether real or imagined, only adds to my stress. Maybe I should wear a sign on my forehead telling everyone what kind of day I am having so they know what to expect from me.
Besides diet and sleep management, at this point medication is helping me through. It doesn’t get me to 100%, but it helps with the symptoms:
Zonegran (100 mg): It relieves head pressure, daily mild/moderate headaches, and I think it gives me a slight energy boost
Zoloft (100 mg): I don’t think it has done much for my migraine, but it has pulled my out of the migraine blues and given me renewed motivation to find the answers. It also has given an energy boost and helps to reduce my crazy dreams.
Adderall (10 mg): #1 reliever of brain fog and fatigue for me. I keep it to this low dose because I don’t want to become some crazy stimulant-addicted housewife, but it works on my two worst symptoms better than anything else.
I’ve recently been diagnosed with iron-deficiency and Vit. D deficiency, so I am hoping my energy level will improve as my levels increase. This is one lesson I’ve learned recently - don’t assume your doctor has checked for all the basics. I had been through numerous expensive tests in the past three years (MRIs, CTs, heart studies, etc.) and yet they never bothered to check my iron or Vit. D before. I recommend you both have your doctors do an iron panel if they haven’t already given your gender and age. Don’t let them just do a CBC and rely on hemoglobin levels. They need to look at your iron stores.
Bec, maybe the nortriptilyne will help you feel better emotionally in addition to helping with the migraine symptoms (fingers crossed). It is very common to get a case of the blues when going through something unrelenting like this. If it doesn’t work, I wouldn’t hesitate to try another class of anti-depressant.
Good luck to you both, and hang in there. I’m convinced this is going to get better some day, somehow!
Hey Marci butt away - it wasn’t a private conversation - I just think we were the only ones online in the same time zone :lol:
My Vit D levels are fine (GP checked recently), and I know historically that I’m not great at storing the iron, but I try and manage this with diet and since I started exercising regularly my energy levels are pretty good considering I’m on a beta blocker
Oh my god, just read through all your posts and I can totally emphasise. This illness is hell. Pure hell.
I too am not bed ridden and am managing to hold onto my job as a lawyer, but everyday is just a monumental challenge. I just want hope that one day this will all be better.
I am not even asking for 100% anymore. I would be happy to be 60-70% as right now I am about 20%.
I have been on preventative medication for 3 weeks now, 50mg of pregabalin per day but have not noticed any improvement and am starting to panic. I am only 27 years old and I need to get on with things but I just cant.
Thanks for your responses. Marci, funny you should mention vitamin D. When I had my first attack, my GP did run standard blood tests and found me to be vitamin B12 and vitamin D - but not iron - deficient. I had actually become vegetarian in July of 2009, one month before these symptoms started. I have since rectified both deficiencies which made no difference to my symptoms. Only recently I finally decided to start eating red meat twice a week. I hate it but I need to see if that has anything to do with the symptoms because the timing was certainly a coincidence.
Gabrielle, Dr Waterston took a full history of the symptoms then performed a few standard neuro tests like following his fingers with my eyes etc, then he did the hallpike test, which many doctors have done with me and failed to produce anything tangible, but Dr W has some goggles that he puts on you and you have to stare at a red light inside the goggles whilst he flips you each way for the hallpike. Then he shows you on a computer screen what your eyes have been doing. Mine were ‘beating’ (flicking up and down). Apparently this is indicative more of a neuro situation than an ear situation, where the eyes are more likely to go in circles. I found that reassuring that he did actually find something and could even show it to me on the screen.
Very sorry to hear about your pooch, too! What’s wrong with him? Sorry to hear of the unexpected expense but like you, I would spend anything to save my furry family members.
Chronicdizzy, I don’t envy you trying to be a lawyer with this problem - that must really be a struggle as you so need clarity with that kind of work. I am a database manager and find that very hard also when I am unable to focus.
Yesterday was tough at times because I spent my birthday morning feeling really down and sorry for myself, thinking the last year has just been a total write off. But then I picked myself up and did try and find a silver lining and it is this: When I am having a better day (or hour), I know I am a stronger, better person, with more depth and courage, than I was a year ago. It is only when I feel well that I can tell the difference but I can definitely see it then. I guess it is true ‘what doesn’t kill you makes you stronger’. It is amazing to think how much we took for granted when we had full health. I can’t even fully remember what that was like but it must have been AMAZING.
Let’s all hope we can get back there again, and if ever we do, we will be very different people than we might otherwise have been.
Chronic Dizzy, I read on your previous posts that you’re also seeing Dr Surintheran…I’m interested to know why (if you know that is) he started you on that med…Everybody else I’ve read that sees him started on Nortriptyline which I’m currently on aswell
Bec - my pooch has damaged his cruciate ligament (in the knee) and because he’s over 35 kg its a much more expensive repair and we have to travel to Melbourne for it (UGH 2 day trips in 3 days). But he’s only 5 so worth doing even if it means no holidays for a few years…and he’s lovely as well, but of course I’m biased
Glad that there was some silver lining to your birthday!
Chronicdizzy - just being in London is enough to make me dizzy :lol:
I can so relate to what you are saying. I am not the person I used to be. I have no social life at all and don’t dare make any plans because most likely I would have to cancel them. Haven’t eaten out in months and months. I am also able to work full time, fortunately, but it isn’t easy. I have no husband or children, either.
What you said about others being oblivious so fits the way I feel. I could be standing with 1 or 2 or 3 or more people at work and they are all talking and having a good time. And I am pretending to, faking it. But inside my mind I have very little idea of what they are saying because my mind is elsewhere thinking things like "I feel like I am on the edge of vertigo . . . don’t move your hands so much when you talk, it makes me feel sick . . . how can I get back to my desk without staggering . . . everything just seemed to shift 1/4 inch, is it me or was there an earthquake . . . oh, help, I hope I don’t suddenly vomit in front of everyone . . . I feel so wobbly and unstable. . . . those flickering lights are giving me a sick headache . . . I feel so carsick . . . . suppose I suddenly get vertigo . . . .is the floor slanting or is it me? . . . . . STOP MOVING YOUR HANDS!!! " The people I am with haven’t a clue what is going on inside my head. They just don’t know. I have become so dysfunctional over the last couple of years. To make things worse my doctors haven’t been much help at all. I feel like I am fighting this battle all alone.
That right there may be the worst thing about this condition. Even with family and friends who care about us, they really have no idea about what is going on inside our bodies. There is no way they can without experiencing it themselves. Even having this forum is only of limited benefit since we can’t provide direct human interaction to express our support and understanding. Of course it is MUCH better than having no support, but still…sometimes I just want to scream. But that would probably make me dizzy. :?
For me, I find it much better not to put on the mask. If I work, I work. If I’m not on task, I’m going to grab down time that restores me a bit. 'course, I don’t work in an office. Also, I’m enough motivated by most of my work, that I can stay “on” for long periods. If I’m on the job at someone else’s premises, if I need down time I’ll stop the clock, so to speak. (No, not by shining my phiz toward it.) Usually this will only be after several hours, when it’s very reasonable to take a break, anyway. Happily, I’m sufficiently better that I generally can put in a full day’s responsible, full-steam work. But when I wasn’t, sometimes I would discount my rate, and tell my customer that it was because I wasn’t 100% that day.
Plastering on the smile or the look of interest is hell for me, much worse than focusing on a productive task. I’m very fortunate that between diet and exercise I can do good work, and most of the time can think clearly again. That, on top of the aches-and-pains improvement resulting from regular hard exercise, is very rewarding. It doesn’t matter that my diet is severely restricted, my income is way down, my sex life is almost nil; this is vastly better than what I was experiencing a year ago, and I have no reason to believe I can’t make further progress.
Time for a bit of tragic humour. First came the Chronic Fatigue Syndrome, then the MAV. After 20 years and over 20 preventatives, just about coping with painkillers, then coccyx pain at Christmas lasted till June. June time it was going off so decided that life was worth living, would take a holiday so spent too long on the computer and got bad tendonitis in my right hand which has now lasted 3 months.
My usual bad insomnia made me go round the clock for 3 days with no sleep and one night went to bed early and hubby was making a noise in the kitchen, flew down the stairs in temper, fell over the vacuum cleaner and broke small toe 4 weeks ago. Decided to get some hormones from the dr. to sleep and started on progesterone. That has given me bad migraine and terrible dizziness and now irritability and depression. So I am laid on the bed with bad head, hand in splint and foot in bandage.
Wouldnt worry about having family and friends, all I can say is, the old saying is true, laugh and the world laughs with you, cry and you cry alone. At least that seems to be the case here.
Our time will come (still optimistic after 20 years of this crap)
Glad you are able to share it as humor. But then I love slapstick.
My doc prescribed ambien when I was having trouble sleeping. It works pretty well, but not perfectly. Also a little bit of a hangover, dispelled pretty well when I take myself in hand and exercise. Regardless, it beats the bejasus off being underslept.
I can’t imagine 72 hours awake. Brrrr. Glad you didn’t hurt yourself worse as a result.
