The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

On being bedridden


#1

Continuing the discussion from I feel like i am different to everyone else:

I’m really getting to wonder about this being bedridden. It’s happened to me numerous times and I find it’s very soul destroying and depressing. I know sometimes it’s necessary, absolutely necessary but really, for a whole host of reasons, the human body is designed to be on the move.

Over the years my criteria have changed for staying in bed. The first doctor I saw with MAV who diagnosed me as BPPV told me categorically never to go to bed until it stopped. But to sit up straight in an upright chair all night if need be. I tried to but I cannot sleep sitting upright and soon the attacks were 72 hours duration so I’d creep off to bed overnight. Years later another doctor said ‘Bed and stay there’. I certainly needed bed when very acute. I couldn’t move a muscle or open an eye for days and had no balance to stand/get myself to the bathroom at all. Couldn’t lift head from pillow to drink yet alone stand for days on end. Couldn’t stand light, noise, movement. Even the thought of TV turned the stomach. My criteria as each attack receded a little was always if I could get to the bathroom unassisted, I could get up, sit in chair downstairs-and observe if nothing else. Once medicated things did improve and often criteria became,provided when I stood up in the bathroom the rear head pressure was just bearable, I could get up and be downstairs in the real world. If nothing so much better psychologically. Also I discovered much later so much better physically too. The amount of bone density and muscle mass lost during a short period of confinement in bed is alarming!

I’ve had MAV over fifteen years as bad as many and I suspect worse than most so I’m sympathetic so please don’t think me too hard when I say being miserable/fed up/depressed by MAV symptoms shouldn’t keep one in bed. We all need to make it a last resort. Helen


#2

There are many limitations from being in bed, such as vitamin d deficiency, muscle mas loss etc etc so its never a good thing, but for me personally it’s not depression keeping me in bed but the physical symptoms. Forcing myself to sit up all day made me feel much more depressed than being lay down, because of the physical struggle to sit up during dizziness and head pressure. I felt each day was like climbing a mountain, just to remain upright. It was draining, and thus made me feel physically worse, increasing my migraine symptoms. When each day is such a struggle, it’s emotionally draining too, and that in itself increases migraine. My whole body tenses up when i am upright, subconsciously, because of the dizziness, and i end up aching. I feel emotionally better and a bit mote relaxed when lay down, thus a little better with the actual migraine too. The physical and emotional struggle to be upright or active is enough to trigger more migraines, for me anyway. I realise for some people being inactive triggers migraine and makes them feel worse. I know that sounds drastic but that’s my experience with this horrendous condition. I don’t usually admit how severe it seems to be because i don’t want to attract a million questions doubting my diagnosis (3 consultants have confirmed it, i don’t doubt it) or seem like i am looking for pity, i’m not. I read a report a few months ago about how vestibular migraines leave patients with more depression and less quality of life than other migraine types. That’s kinda obvious.

I have fluctuations in severity, so when i don’t feel so severe i sit up more, move more, but it doesn’t make me feel any better, i end up with another awful severe few weeks just like usual. I just do it to make sure i don’t develop anything else from being inactive.

There was one mav sufferer who i spoke to a while ago who said that until you find some successful treatment that gets the ball rolling, activity just makes things worse, there’s no sense in pushing yourself. Once you find treatment starting to work, then you need to slowly be more active. I don’t know how accurate that is since i’m still waiting to get the ball rolling. I just know that i don’t feel any physical or pyschology benefit from pushing myself to move more or be out in the garden etc. It leaves me physically worse, hence more fed up.


#3

Hi. Oh, don’t think I was suggesting you leapt (some hopes of that for sure in your current state!) out of bed and did press ups. Having read your fuller account elsewhere believe me currently you are better off where you are. You have every bit of sympathy from me. I know exactly where you are coming from. I’ve been there myself oh so many times. Rear head pressure makes your head feel like it weighs ten tons. It hurts to lift it off the pillow even before the pressure starts increasing and it’s sore as you lie down because it’s tender touching the supporting pillow. I’ve had bedsore on my left elbow because lying on it was my only option for days. I’ve vomitted to the point the doctor wanted me in hospital I was dehydrating and I’ve had nausea that lasted all day and night for probably nine months at a stretch. And that’s just the symptoms that come immediately to mind. Then there’s the light. And noise. A shutting door downstairs echoes through you like ten thousand shutting doors. On this one I’m with you all the way.

Hope they didn’t waste a fortune researching that one. Quite a few board members could have told them that by text if they’d asked! Mind you it could be helpful if a few more doctors got a grasp of it from my experience anyway. They don’t have a clue.

From my experience that’s pretty much how it goes. I’ve always found it too easy to overdo it and end up far worse for weeks. Helen


#4

Being fedup and depressed is not what keeps me in bed either. I have 4 illnesses. When the dizziness and my other conditions are unbearable I have no choice but to sit on the bed. Or lay. Too much stimulation hits me hard. I move about when I can as much as I can and have always challenged myself.


#5

I hear you misigraine, you sound very similar to me in symptoms & your outlook. This illness makes a lot of our choices for us. And as you say, doing more can make you horrendous. We do what we can with what we have, we try our best & that’s all we can do.


#6

Thank you for understanding, many people don’t get it. I’ve developed a bed sore on my ear from being lay on it, i got a softer pillow which helps. Luckily i don’t vomit often, only when things are very severe and thankfully the prochlorperazine helps that. Your descriptions of the head pressure and light and noise is spot on! Whenever i leave the house for a medical appointment i’m sure it’s the combination of movement, light and noise that makes me feel bad for up to a week afterwards. If i wash my hair i feel bad for days after. Sometimes weeks, like you said. The whole world seems like a trigger. Although even lying in bed doing nothing, i still have bad times for no identifiable reason. My plan is to not overdo it until i am starting to feel better, and then i will gradually work my way up being active.

I wish i could make the doctors feel how i do just for 24 hours. They don’t appreciate quality of life, don’t understand the impact of dizziness. Its just a word to them. The last neuro i saw said i looked depressed so i pretty much said “how would you feel?” His response was to say i’ve got “what we call a low mood as a secondary development of having a chronic condition”. Do they live in the same world as everyone else? It’s common sense i feel fed up when i can’t actually live, i just survive. Why are they so detached?

Sorry this is getting off topic, but thanks for understanding. Like i’ve said before, on Facebook i found most othets with mav didn’t understand. Here, i’ve met people who definitely understand and it’s reassuring.


#7

Thank you, i’m so sorry that you suffer so much. I only have one condition that i know of, MAV, and that’s hard enough. Too much stimulation definitely makes me worse.


#8

His response was to say i’ve got “what we call a low mood as a secondary development of having a chronic condition”. Do they live in the same world as everyone else?

HO, HO. That’s much like telling you the washing machine is leaking when you are standing in a huge puddle in the utility room! It’s like the ones that try to tell you it’s Anxiety/Depression. Oh, I know. I’ve often said I’d like them to have such a condition for 24 hours and then ask them how they were feeling. A tad down in the mouth. Friends who have never suffered such disability don’t/cannot have a clue either. It’s outside their grasp. One used to keep saying to me how frustrating it must be not being able to plan to go places not knowing if you would make it and how frustrating to lose holiday deposits or the cost of theatre tickets. About the last of my worries I always used to think when my main concern was being able to stand up longer enough to make a hot drink. No there aren’t many people who would ‘get it’. Not many at all and certainly not most consultants and on the subject of consultants I very much doubt they are in the same world as you and I, not ever!. The only ones with any real understanding are people who have at some stage had some sort of vertigo/dizziness themselves and then it’s a different story. As a very intelligent psychologist who has MAV himself once said to me ‘The whole world looks different here on in once you’ve struggled to get to the bathroom with no balance and the whole room spinning and using the walls for support. I don’t think it can ever look exactly the same again’. Welcome to Our World.

Still I’ve found things have improved dramatically once one’s found a tolerable drug and with the passage of some time so there’s still light at the end of the tunnel. I do hope your consultant appointment is in early April rather than late and that our conversation has been of some use to you. At least you know you aren’t the only one who’s been through this and others have survived and improved. From experience I’d say because we’ve had it longer and worse than most, it will take longer than most and probably more in terms of treatment but we are tough or we would never have made it thus far, so we can and will do it! Helen


#9

@MissMigraine

Bloody hell I never thought I’d find someone with worse symptoms than me. What you’ve had to go through is unbelievably unfair.

@MissMigraine @fedup
Please stay in contact as you keep trying new avenues of treatment. I have faith that one day all of us will get a major improvement and no longer be bedridden. We’ll be posting success stories here and coaching the next generation of MAVers through this absolutely nightmarish, unfair, and underecognised condition. As long as we never give up trying new treatments it will happen for all of us!


#10

Einstein said ‘You never fail until you stop trying’ Helen


#11

It must have been relief to speak to a professional who has felt dizziness. Did they give you any advice? I was recommended cbt but declined it because i didn’t want to be pstronised by someone who has never felt debilitated telling me to have more positive thoughts and that’ll change everything.

Going through this has given me a new appreciation of life. Like you said, when it’s hard to even get to the bathroom, life becomes different. If i can manage to feel better i will appreciate so much that i took for granted. I just worry that i won’t find anything that works, that i won’t be able to live again.

Yes my appointment is 3rd April, thankfully. And talking with you has definitely been reassuring, so thank you very much. I hope you continue to improve. Nobody deserves this condition.


#12

@d.powell you too! I hope we all find relief and get our lives back. Keep trying every treatment there is!


#13

The only professional with personal experience was the psychologist and he isn’t my psychologist (don’t have one, never have). He introduced me to the concept of Ecological Psychology whereby we feel better being outside absorbed in nature. He also gave me a few tips re Visual Vertigo and horizons etc from his own personal experience of coping with the condition and in a roundabout way I suppose he introduced me to the idea (pre my venturing into health forums this was) that MAV is life changing. His had caused him to retrain for a new career. He was successfully coping with his condition and working in his new job so that proved it was possible to have Life Beyond MAV. Not that I’d actually ever doubted that. Helen


#14

Thanks and I’m so sorry to hear you suffer so much. I feel for you. Will shoot you a private message when I can. Hang in there but I know how hard it is x


#15

Thanks D. I rarely come to the forum but glad I did. Even though I hate that you guys have it so tough, it helps to know I’m not alone & others can relate x


#16

Quite! (And no they don’t, lucky for them!)


#17

That’s something I’ve discovered through personal experience and have promoted on here. Interesting but not surprising that it’s a recognised form of relief.


#18

Here’s what might prove a useful link to the subject that I was given. Might be worth giving it a thread to itself. Not that I know much about it. Initially it just seems like commonsense but as you get further into it it proves quite a new concept to get your head around I found. Interestingly there was an article in Radio Times on similar lines but with particular reference to being under trees. I’ll find it and add in. Helen


#19

My opthalmologist also happens to be a friend. The last time I had an appointment with him I mentioned my vertigo to him (I don’t remember why) and he made a sort of strange comment. He said something like, “vertigo is a benign condition,” and then clarified it by saying something to the effect that it doesn’t lead to something more serious (like a terminal illness, I guess). And, again, this is a friend of mine saying this. So I don’t think he intended any harm, but what it told me is that doctors aren’t very interested in symptoms if they don’t think they’re going to lead them to a diagnosis of some serious disease.

The last neuro-otologist that I saw told me, “Most doctors don’t want to treat dizzy patients.” And years ago an old friend who happened to be an ENT told me that he could only see a couple of “dizzy” patients per day because it is such a frustrating condition to treat.

In the defense of most doctors, I will say that they probably see patients every day who say they are “dizzy” for one reason or another but their type of dizziness isn’t OUR type of dizziness. So I do understand why a doctor might not take us seriously at first.


#20

They absolutely don’t take conditions seriously that are benign! Quality of life is very under appreciated. It should be taken just as seriously as non-benign conditions, because low quality of life results in depression or anxiety, which then needs treating. Chronic stress can lead to other medical conditions which then also need treating. All of this costs more money which could be avoided if quality of life was taken seriously enough.

I really hate the attitude that if something is difficult to treat, they want to avoid it. Their job is to help people, not just to only help people who are easy. Does it wound their ego or something?

I’ve noticed a bit of a bias towards young people, especially young women, here in the uk. Some GPs believe that young women are exagerating, or can’t tolerate pain well so they are making a fuss over nothing. Or if you are young it can’t possibly be something dangerous like it could with an older person. As a result, period problems are completely dismissed in many women who believe their severe symptoms are normal. The gp who misdiagnosed my vestibular migraines spent more time asking me if i was sure i wasn’t on a diet because i am quite naturally slim, presuming i’m a young woman dieting for vanity, than on taking my symptoms seriously. He has treated other, older members of my family adequately though.

I know a guy who is a radiologist, who regularly talks with consultants about the results of scans. He says so many of those doctors have such low levels if empathy that they treat patients as bodies, not people. He gets into arguments about patients care because he wants to help treat them but doctors aren’t interested in conditions that are benign.

There’s an article about low empathy in doctors that’s written by a doctor. He puts it down to

  • The focus of medical education is on learning facts about diseases rather than learning how to understand people with diseases.