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I feel like i am different to everyone else

#1

Exact same thing happened to me and I’ve had the same fears too.

When I brought it up to my neurologist he suggested that I switch to some form of injectables (hence the Aimovig). His reasoning was that the injectables for migraine are known for having way significantly fewer side effects

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It’s been a week and half since I had Botox
#2

That’s really good to hear! Thank you for sharing. There is still hope! How are you feeling on Aimovig? I know it’s still early days. Have you tried any other forms of treatment beyond pills? Like diet, acupuncture, botox etc?

#3

No problem! Those of us at the more severe end of MAV have to speak up so we know we’re not crazy and yes migraine really can be this bad :sweat_smile:

I’m only on day 2 of Aimovig but the last 2 days have been significantly better than most days of the last 3 months. Especially in terms of pain. I’m trying not to get my hopes up though for reasons that you will appreciate as well as anyone!

The only real alternative therapy that I have tried is diet-related. When all this began I was slightly overweight and decided to adopt a low fat vegan diet after I read in a study that it was useful for both migraine prevention AND weight management (which in itself is helpful for migraine). Results? Nothing in terms of the migraine but I’m in pretty good shape now considering I am practically bedridden :joy:.

I am stubbornly western and conservative (perhaps to a fault) in my outlook on medicine and have refused to try things like acupuncture and the like (although I guess some would consider a vegan diet pretty “out there” :joy:).

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#4

As much as i’m sorry to hear that you have it so bad and are bedridden, it’s also encouraging to know because i have it that severe too and yet feel like an oddball rarity, as being in other groups of mav sufferers i just felt surrounded by people who could go to work, or leave the house, who didn’t understand that i’m not just being lazy. I can’t even talk without making my symptoms worse. I can’t move, walk, laugh, read a book, or even concentrate without my symptoms getting worse. It’s horrendous. I tried doing the typical migraine diet but it didn’t help me. After my experience with pills, i would gladly try any other treatments available, no matter how alternative they are. I hope the aimovig helps you!

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#5

Hi. You should like you are describing my life. MAV affects every last part of my life. Basically, it runs my life even though I tell myself it doesn’t.

I tried the MAV diet a few times and didn’t put much stock into it. Then when the MAV worsened so much that I began spending most of my life at home indoors with all the windows shut (outside noise can make me stagger & become nauseous) I started noticing that certain foods do indeed bring on the bobble-head and pressure waves (they feel like they go from ear to ear). For me those foods include bananas, yogurt, peanut butter, any alcohol (even a sip on New Year’s Eve) and recently, to my chagrin, chocolate.

I did find that acupuncture helped with the migraine pains but not so much other symptoms. I tried that for four months. Yoga helps but only gentle, stretching yoga poses. I’ve found a few that are even soothing to agitated moods or panic attacks. I’ve tried meditation and stuck with it for years but the last year it became more problematic than helpful. That (being problematic) has to do with my having PTSD too and is likely that more than the MAV.

It all seems to be too much doesn’t it? But, we keep going. Keep trying.

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#6

No, sorry but you aren’t unique. MAV varies in intensity and also changes with time. Mine did. I know it’s impossible to imagine sometimes when people might tell you to ‘power thru’, ‘push the limits’ and so on. The people tell you how ill and dizzy they are, and ten minutes later they seem to be going for a 5K run, off to the beach or the gym for a cardio workout (whatever that might be) and then you have to start wondering ‘Are we all suffering the same thing?’, or ‘Am I a wimp?’. MAV affliction varies considerably it seems. Until I came here I had no idea. I thought what I had was same as everybody else but it’s not the case, like you, @d.powell, @jojo65 and quite a few others I could mention I’ve been bedridden (nine days in January me, most recently), couldn’t get myself to the bathroom. NO balance at all.

Personally I’ve been luckier than you here but again. You aren’t unique. You just weren’t looking in the right place. I think I could find others. As it stands, it gets you depressed but I think you need an amendment to this comment to include the words so far, after ‘every single med’ because somewhere there must be something that will help you. There are lots to sort through. Helen

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#7

Thanks so much, that’s reassuring!

#8

Thank you for sharing your story. I’m sorry you have it so bad. I feel less alone. You described me. I’m housebound & spend 19hrs on the bed a day. Everything makes me worse…trying to read, type this, make lunch, talk etc. Just wanted to say hi & hope today has some lighter moments thrown in for you

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#9

Thank you, i hope you get some relief from this condition too, thank you.

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#10

@fedup @MissMigraine
Out of interest, what do you guys do to keep yourself occupied while bedridden? It’s been going on for years now and I’m honestly at a loss for what to do and end up spending most of my time watching mindless YouTube, as anything a bit more sophisticated such as reading or watching documentaries just takes too much concentration with migraines.

On being bedridden
#11

I have the tv on all day and sometimes watch it or just listen to it. I watch crummy daytime documentaries, sport, and sometimes watch dramas via streaming apps if i feel well enough. My mum spends afternoons and evenings with me so she talks to me, sometimes she does crossword puzzles and asks me the questions. I desperately want my life back, i don’t want to live like this. I think i will cry when i can read a book again, write again, draw and paint again. I can’t wait to be able to eat properly. i can’t stomach a proper meal due to nausea and dizziness. I’ve lost over 2 stone and am skinny, i hate it. One doctor told me to be more active and then i’ll be hungry and able to eat more… What a joke. When i move, walk etc it increases my symptoms, making me more sickly and less hungry. My gp surgery is literally less than 3 mins walk from my house but that walk leaves me feeling so severe i feel terrible for days afterwards. Walking from my bed to the bathroom worsens my symptoms temporarily. I eat little and often, take multivitamins and force down food even if i don’t want it. Migraines do actually affect appetite too.

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#12

MissMigraine,

I am sorry your situation is so difficult right now.

When I need to be flat out on the sofa or bed, there are a few things I try to do. I play favorite movies or tv shows on my iPad on the nightstand. I don’t watch them because that would mean lying on my side which makes the symptoms worse and trying to track the changing scenes (the color & movement) would also worsen the symptoms. But, listening helps distract me.

I also try to read at times. Losing the ability to just sit down and read was the most difficult adjustment for me. (Still is a sore point.) But, after reading an article written by a man who lost his balance after gentomycin treatments, I tried his idea. It takes a few pillows. I prop my head & neck very well so I don’t slide down or move to either side (this is at a low slant - I’m not lying totally flat or sitting up) and then I place pillows across my abdomen and to the sides. I prop the book on the abdomen pillow so that it stays steady. I have a clip-on light on the bed’s headboard that shines directly on the page. If the words are too jumpy I use a handheld magnifying glass to help counteract that.

All that said, this is still an exhausting activity. I can read for up to 20 minutes at a time like this, then rest for 40 or 60 or whatever is needed. On the surface it can seem like it isn’t worth the effort. The first few times I tried it I gave up out of frustration. But, I have found that it works for me and being able to read, even for just 20 minutes and even if that 20 minutes requires a short nap, well, I’m reading again! Those intermittent 20 minutes of reading give me enjoyment at reading again and also, I get slivers of hope that with practice I’ll be able to read more.

(I also use the same method for reading when sitting up. It’s a lot easier to perch the book on several pillows than tip my head down to look at the book.)

I also meditate a bit (the body scan approach), stretch if possible (very gentle yoga moves while lying down) and if all else fails, I sleep. The brain needs a lot of energy to deal with this condition. Sleep helps.

I wish you well.
Molly

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#13

Your own GP should be able to prescribe you something to stop the nausea. These days in UK you can purchase Buccastem tablets from pharmacy off prescription. They should stop you feeling/being sick. They even come in a slow dissolving form you place high up on your gum so you don’t have to swallow them. For me they worked 100% of the time. I even had the same drug by injection a couple of times. Then you could eat a little. That would help in itself. Can I ask. Do you stay in bed because head/ear pressure is so bad you need to stay lying down and/or because you have no balance when you try to stand of is it another reason. As you can watch TV I assume you don’t have true rotary vertigo (the room’s not spinning), or visual vertigo which unbalances so badly. Helen

#14

@Onandon03 My gp gave me prochlorperazine for the nausea. It stops me vomiting but doesn’t stop nausea. I can only take them on rare occasions because they aren’t meant for long term use, which i thought was the same for most nausea meds, even otc. How often did you take them?
I don’t have spinning vertigo, no, it’s like being on a rollercoaster or freefalling, like gravity is so strong i am being sucked down. Its absolutely vile. That and the head pressure can be so bad its a struggle to sit up. I sit up for an hour or so then lay down, several times a day. I used to force myself to sit up all day but it just made me feel worse, no better. I don’t physically feel much better lay down but it’s somehow easier to deal with. I prop myself up on pillows because being lay totally flat makes it worse. I lay with my eyes closed quite often, just listening to the tv because the movements make me dizzy sometimes.

Edit: i just googled Buccharem and realised its 3mg prochlorperazine. The pills the gp gave me are 5mg each. But even with the Buccharem, you can’t take them for more than 2 consecutive days. The gp told me not to take the ones she gave me for more than a week because they can cause irreversible neurological problems. So i only take them if i feel like i could vomit, which thankfully isn’t often, and when i need to travel by car. So i can’t take them regularly. As far as i know there aren’t any meds for sickness related to dizziness that you can take regularly, although i could be wrong.

#15

Sorry to hear you suffering too Molly, I definitely prop myself up on pillows too, and listen to the tv.

#16

I don’t think I ever took Buccastem more than four days following during acute attack. I don’t think I ever used the whole box before they went out of date either. Sure I didn’t. I was lucky in that for me they stopped both actual vomiting and feelings of nausea so I could eat and drink normally and used to manage to sit up in bed long enough to do so. I’ve known people who have found it would stop dizziness too but not our central (migraine) type, more the ear type. It’s not supposed to be used often I know but there are other drugs, mainly used to treat various reflux conditions that will control nausea and can be taken long term.

If there are I haven’t found them yet either, Helen

#17

Hi D. Sorry, I sympathize with you. Yeah, mines been 9 years. It’s utterly depressing. I shower & that about kills me, then rest on bed with eyes closed. I can watch short bits of YouTube at times (day maximum 1hr tv in daytime & maybe 2 hrs at night), internet very briefly, or close eyes & listen to a podcast. Or nothing, just lay. When I can sit up I force myself, sit in lounge, read 5 pages. I wander about inside and outside doing lil things like wiping dishes, feeding dog etc. I live with my parents and need their help daily.

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#18

Oh I forgot and I meditate doing body scans on the bed & breathing techniques

#19

Your life sounds like mine. I can’t shower, i sit on a stool and wash with soap and a washcloth. I wash my hair with dry shampoo because i can’t stand the water running over my head. My mum helps me put socks or shoes on so i don’t have to bend over, she makes food for me and, like you said about your parents, i couldn’t manage without them. I’m 30 and i hate being dependent on them instead of having a normal life. I wish i could help my mum with her health problems so she doesn’t have to look after me. I cling to the hope that this is temporary and i will get well enough to live again. For 5 years my symptoms used to last for 6 months and then subside to just background noise that didn’t stop me from functioning (i would just have mild head and ear pressure, tiredness and tinnitus) and that was without any treatment because i didn’t have the right diagnosis. So i hope i can get back to that wellness again somehow, before this flare up started 2 years ago and i’ve been stuck. I hope you find relief, fedup, don’t give up hope.

#20

You poor thing, I feel for you. You’re doing it really really hard. You sound very similar to me, that’s how I was in the beginning…overtime I guess it’s improved a smidge…but still. It’s very much there & dominates my life. I’ll send you a private msg when I can. Hoping things improve for you soon, it’s bloody cruel. Many hugs x

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