The Vestibular Migraine Community
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Feeling discouraged!


#1

hi all is there anyone out there that can convince me that im going to get out of this relapse stage its been over a week and it doesn’t seem to be settling at all,infact all its doing is making me frustrated,angry and really miserable!! surely there as to be a way out of this migraine hell!


#2

I know how ya feel. I had a 2 week lapse recently then a couple days later last weekend got hit with another lapse. Thinking conservatively a week to get back to not so imbalanced but not close to baseline.
Hang in there.
Try to stay away from triggers. Make sure you’re drinking a good amount of water and getting some movement. Don’t sit around cause your head needs movement from what I’ve noticed.


#3

thank you space_cadet I seem to be getting worse its so disheartening I don’t remember ever being this dizzy! how are you now?


#4

bump up the dose of ami or prop after talking to your doc…try adding in some long walks…take it easy at work…take frequent rests…give your eyes a lot of rest…check your hormones…Hope you feel better soon Melly…if you neck feels sore get a massage


#5

I was actually offbalance all week… and yesterday evening I had a massive migraine and it was difficult to fall asleep. I even woke up a couple times and the first time I woke up I was shivering. I’ve had a bit of a headache all day today and for most of the days I felt like I was going to be pushed around. Currently I’m sitting on my couch and it’s night time. My head hurts a bit and I feel I’m being picked up sort of. I just want to fast forward to my baseline again because I was doing very well and on my way to recovery more so. My ear has been fluxing up and down for most of the week and then settled on Friday–then Saturday evening that changed it due to the massive migraine and today it’s been fluxing up and down but mostly up.
I’m feeling like hell from it but I’m still trying to move around cause I’m hoping / believing that I will get better but enduring this right now sucks so bad. It’s frankly scary too when you walk around and think you’re going down when the floor is flat. I’m hoping my ear finally regulates from going up and down and then starts working on reducing the imbalance again like my baseline was.

That’s how I’m currently doing. I’m hoping by Thursday I’m a bit better than I am today or was last week. It’s really testing on someone. Especially since it took 2 weeks to get a bit better, then to only have another lapse a couple days later which screwed up the entire week and once again another Sunday I’m all screwed up.


#6

thank you Getbetter im really trying to do my everyday things to keep motivated but its not easy!


#7

ohhhh noooo sorry to hear that space_cadet its so upsetting to think your getting there then BAM it hits again this illness is debilitating at times and it upsets me to think no one understands unless they’ve had it!


#8

I hear you all! Today has just about been my breaking point:

I knew that I wasn’t seeing improvement, but last week I was at least a bit more comfortable in my apartment. More confident to walk around, less nauseated. I had bad headaches and I tend to be less dizzy during the headache phase, so I guess that’s what happened, because last night I was hit hard. (the barometric pressure did drop crazy low with a warm then cold front coming through today, so I’m sure that didn’t help)

I had spinning dizziness in bed once I laid down to try to fall asleep (already sleep propped up). I haven’t had dizziness THAT bad in maybe 6 to 8 months or longer. I had to sit up a few hours and try to lay down again. It wasn’t the “can’t move my head an inch” spinning but was close. It never fully went away sitting up and is still present today while I’m up, which is abnormal.

Here’s my situation in brief:

  1. Tried so many medications, couldn’t stay on most long enough for fair trials (except Zoloft) without side effects making me stop. I now have SEVERE medication starting anxiety. I am now going back through medications to try to hang on longer, but have gotten so much worse in the meantime it’s going to be harder. I put off Lexapro for a year after trying it twice, and now here I am having put off Amitriptyline for 2 months (2 years ago I tried it 3 times at 2.5 mg but never made it past 2 days as I got so much dizzier)

I am planning on trying Amitriptyline again this weekend at the super low dose, maybe even 1.25 mg instead of 2.5 this time. However now that this spinning crap has come back I have again lost confidence that I can handle being dizzier like the Ami made me before.

  1. INSOMNIA. Been going on off and on for at least 8 months. However since Feb 6th I’ve only had 2 nights of 8 hours of sleep, a few of 6 hours, but the rest 4 or less (I journal my symptoms/triggers). I just got black out curtains which helped a good bit, but a soon as my brain seemed to be a bit retrained to sleep from them, workers started doing renovations on the apartment unit below us. It’s been 6 days now of CONSTANT drilling and hammering from 8:40 am to 5 to 5:30 pm. I’m at my wits end with it. Since I have so much sleep trouble my sleep schedule has gotten pushed back a bit. It’s consistent times just later, and I usually sleep until 11 am. Well, getting woken up at 8:40 to hammering and drilling noises has NOT helped. I’ve tried going to bed earlier but I just kept waking up multiple times. I would need to do so in tiny increments to change the schedule.

I don’t see how I could try the Amitriptyline if they aren’t done the renovations by the end of this week. It’s been vibrating the floor (and the bed once, the sofa a lot), super loud, and preventing me from getting longer sleep.

  1. On top of all of this the spinning hasn’t stopped yet today. I’m on a low dose Xanax (0.5 mg 2x/day) and used to be able to take extra Xanax (even 1/4 of a 0.5 mg tablet) to be less dizzy, but the last 5 or so times I’ve tried extra it has just made me dizzier and even a little more anxious due to increased dizziness. So without that as my “last resort” I feel like I have nothing to stop the spinning and that is scary and anxiety provoking all in itself. I can’t even go rest in bed (which doesn’t help anyway because lying down is worse) with all the construction downstairs.

  2. Did I mention I’m housebound? I was just able to barely able to get out to doctor’s appointments and walks outside with help for 2 years, but since mid-February all that had to stop. Going out on a walk (or just standing outside) or in a car has given me a horrible cross-eyed feeling that brings on nausea and takes at least 5 days to go away. The car rides added a whirling sensation in my ears.

  3. And my husband and I are barely getting by financially. His job really isn’t enough to support us, and I’ve been out of work for 2.5 years now. I have applied for disability (live in the USA), been denied twice, have a lawyer and am waiting for a hearing which could be another year or longer away. (18 month wait for the hearing which started in August 2017). Both of our cars are OLD, 11 and 20 years old. Mine is the 20 year old one and we’re just keeping it as a back up when the other car is in the shop and there’s no point in selling it. And I REALLY hope to be able to drive on my own again someday. And carsickness wise I’m the most comfortable in it so we use it if I do have to get out to an appointment. Well, today we found out the 11 year old car needs $1100 in work. We’ve already borrowed some money from my mother since my husband’s job is weather dependent and he had less hours this winter. We’re getting a credit card from the car shop and have 6 months to pay off the $1100 without interest, but we’ll be lucky to do that. My husband needs all 4 of his wisdom teeth removed and he’s already hit is dental maximum for the year. It’s all hitting us at once.

I’m barely able to handle the guilt of how I’ve put medications off and keep stopping them. I’m just suffering so much I don’t see how I can handle anything remotely worse. Especially with this construction going on.

Thanks for listening, I really needed to vent to everyone who knows what this horrible condition puts one through. Any feedback would be appreciated. Except I do know that motion and walking generally helps, but I’ve gotten too far gone from that without a medication to make it a little easier. And I know I need to come off of Xanax but I’m physiologically stuck on it for now. I tried to taper 2 years ago and that was one of two things that made me spiral and become housebound.

I guess in relation to this thread’s topic, I have felt like a lot of the vertigo and imbalance had been coming from my eyes and visual vertigo lately, and I hadn’t had actual spinning sensations in a long time, and now it’s back.


#9

Jess,

I really don’t have the time to respond the way you need us to (and I’m sort of thinking about puking at the moment). I definitely empathize. I just want you to know you are heard and loved. We’re with you.

Emily


#10

Jess,

Just wow. You are enduring this beyond means. Your story is hard to read without feeling really bad. I’m honestly hoping things turn around for you in a much brighter, better way. I was reading about how you mentioned the pressure dropped hard and fast last night (I’m in New England and can confirm it did the same here). I was also feeling a bit off, some sense of possible spin but didn’t happen, it’s just that heightened state it puts you in when you feel off-- it sucks. Imbalance was there too. I’m still trying to get back to baseline too so this constant crappy weather is not helping me by any means for a faster recovery.
I just want you to know I’m reading all your posts and praying/giving blessings.
I really hope things money wise also turn around for you because I, by myself, have to support myself with family not really even there for me. I should be starting my new job relatively soon and I’m a bit nervous since my lapse REALLY set me back where I’m feeling crap I felt last year and my fear of night time approaching is back because that’s when things got really off. On top of that, my relapse set all my tolerances for lights, patterns and such backwards. Eyes also sometimes have delayed reaction to tracking which will also make me dizzy cause of the delay. Ugh. As I say, it’s disheartening, so I hear ya.


#11

@flutters Thanks so much for your kind words, please don’t make yourself worse over reading this though! I definitely didn’t help myself by typing so long on the computer, I just needed an outlet.

@Space_Cadet Thank you as well, your response means a lot. Later this April will mark 7 years of this dizziness, but I worked the first 4.5 years with it. I’m so sorry you have to keep working to support yourself and don’t have help. I don’t know what I’d do without my husband and mother. I couldn’t work anymore, couldn’t drive or make it through the days. I wasn’t working anywhere long enough to gain any type of flexibility, work from home, etc. Yes, I’m in the Mid-Atlantic so we got the same pressure change. They seem to affect me more when they come through overnight to the morning like this one did. I’m sorry you’re still struggling to recover from a relapse. Hopefully by the time you have to work you will be feeling up to it. Thanks again so much for your support!


#12

@Jess09 hang in there, this illness has phases. Your rough phase will go into remission. Do try meds at minimum doses, I think there is a drug out there which will give you a decent quality of life. I pray you find it.


#13

@GetBetter Well, I’ve had this almost 7 years now and was seeing phases. I did get more functional and was in a bit of remission in late 2013 after having stopped working for about a year. I was at maybe 90% and only on Xanax and Prozac, but still felt the dizziness or weird head feelings every day. As in I knew I had to be careful, not make any sudden head movements, etc. I started working part-time again and was overall ok, had some dizzier days but only had to leave work early once. I then started working full time which lasted almost a year, but my job duties changed at the end and the work became more computer based again, and I started to get worse again. Didn’t have to leave work except one time when there was strong smells of cleaning chemicals which triggered awful symptoms, but I was back to barely making it through the day, not being able to hold eye contact with co-workers, and started having trouble with some of my longer commutes as I floated between 5 different locations. So in August 2015 I had my first ever real “vertigo” attack, couldn’t move my head an inch for 4 hours, and haven’t been the same since. Worked a few more times since then but had to stop. Since then I haven’t worked but have just gotten worse and worse instead of better. No remission at all. A few days that are more tolerable here and there but I still can’t do anything, just be slightly more comfortable.

I’m not sure I’m going to see more remission until I find a medicine that works. I want to keep trying them, but have had so many bad experiences so it’s really hard to keep making myself go through hell to try another one. Especially the Amitriptyline as it made me unbearably dizzy 3 times, but it seems like it’s the best choice for me right now as I’ve had a sensitive stomach and can’t handle any of the SSRIs or SNRIs. Thank you for your hopes that I can find the right medicine, I hope I do too!


#14

I’ve been on ami for one week. The first three days were absolutely awful. Yesterday, better. Today, better, too. Give yourself two weeks on it before you jump off. It won’t kill you and life already sucks. You can stand a little more suckiness temporarily just to see if it helps.


#15

@flutters Thanks. Sorry to hear your first few days were awful. I’ve heard some people can be worse on it for longer, even the first few weeks, so at least you didn’t have that.


#16

I do seem to be adapting.


#17

@flutters That’s good.


#18

I just feel like there has to be a better medication choice for me. My anxiety of symptoms is mainly about nausea and getting dizzier. Why can’t we have a medication that doesn’t have either of those as side effects?!

2 years ago I tried Amitriptyline 3 times but only lasted 2 days at a time as it made me dizzier, on 2.5 mg. I thought maybe it was nerves and I could try it again but as it looms closer (trying it maybe tomorrow or Saturday night) I am getting nervous about it and have no confidence that I can handle being dizzier.

There has to be a better solution!!!


#19

I’m so terrified of trying the Amitriptyline again tonight. I know I need to do something as I’m housebound, but I am paralyzed in fear. I was doubled over crying for 15 minutes this morning. I’m even more scared of SSRIs and SNRIs, though. All of the medications scare me, and I thought Amitriptyline would be one of the “easiest” to start but now I’m not sure. I don’t know to make myself do this. I have zero confidence in myself to be able to handle feeling worse. I always get this way right before I plan to try a medicine. I get scared, sad, angry, mad, and then find any excuse (I can turn any reason into an excuse) not to try the medicine and I put it off yet another weekend. This cycle is also tearing my apart with guilt and stress. I always feel frantic, like I need help and need to reach out to my doctors, but there’s nothing new they can tell me. Even though my husband will be home the first two days I still feel alone, especially suffering overnight.

Does anyone have any coping suggestions? It would be much appreciated. Thank you!


#20

@Jess09
I used to be the same way. Still kinda am. But amitriptyline was the first medicine I tried and it helped me. I’ve also taken a medicine that gave me side affects I did not like. What I’ve learned so far is that you just have to try. Because you will never know if you don’t. Plus, hopefully you will e starting with a small dose. Lastly, have you seen a therapist? It might be beneficial to talk about it and to maybe even practice cognitive behavioral therapy.