Are 2nd and subsequent relapses worse/just as bad?

I wrote over a week ago about how my symptoms have been coming back. I (impatiently) waited for them to go away, have tried upping my ami to 35mg and have been taking 0.25 klonopin almost daily. I do not feel any let up of symptoms and last night before bed I was spinning…the worse I have in atleast 6 months. I am up, took a Klonopin and am heading to work, but am deathly afraid this will end up being a horrible relapse that prevents me from working and returning to school on friday. Any advice or words of wisdom are very welcome!!! I can deal with the unsteady bobbing feel, but not the actual spinning. I am hesitant to return to neuro bc I dont think that he would be doing anything different for me at this point (i increased ami on my own). I was in the car 5 hours yesterday, 3 of which I drove, so I am hoping it was due to that, but who knows. I don’t think there is any rhyme or reason as to why this is happening, I have not found any ditary triggers…and I am totally caffeine and aspartame free. ( Guess that did a whole lot of good…lol) I ended my first semester over 3 weeks ago, and am no longer “stressed”…but my symptoms wont leave me!!!
Help!!!

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Jen,

So sorry things are bad for you right now. Not that this is any consolation but my neurologist has told me ‘migraine can change over time’. In my experience this means some periods are bad, some are worse, some are less bad and some are just a different bunch of symptoms.

I’m kind of in the same (rocking) boat as you as I’ve been back on Prothiaden now for almost two months with no measurable improvement and my migraines are quite random - I’ll have a day or two that are (almost) completely symptom-free then bang, it’s all on again. No rhyme nor reason to it that I can see. I DID go back to my neurologist and he shrugged his shoulders and said “So what do you want from me?”. I kid you not. I guess he was just being honest that he really didn’t think there is anything else he can do for me but I’m getting a second opinion (in February) and if my symptoms haven’t improved by the time I see the new guy I’ll be asking for some suggestions on tweaking the meds/trialling something new.

So I guess that is my advice to you - don’t freak out that things are always going to get worse (they can just as easily get better) and don’t be afraid to either ask your doc for some new meds or see another dr.

Hang in there!

Vic

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Hello,

This is all very familiar to me. I have been living with this mav rubbish for 9 years now. I have been back at work for about 6 years now. Anyway, long story short, although I function at about 90% a lot of the time and am able to hold down a very pressured freelance lifestyle, I have had some pretty hideous relapses, usually brought on by either stress or flying in a plane. My advice to you would be don’t panic. For me, If it’s a bad relapse then generally it lasts for weeks rather than days. In the past I would always think, this is it, I’m sunk, it’s back forever. I have learn that having got to a good place, I can get back to it. It doesn’t mean my drugs no longer work or that I am back in the misery forever, just that the trigger has nuked the drug effectiveness and it will take a while to restablize. When I have a bad relapse I tend to up my drugs slightly and wait it out. I have found that my emotional attitude to the whole thing is key to getting rid of the symptoms. If I panic and get wildly anxious it prolongs the symptoms.

You say there is no discernible trigger but there is, you were very stressed three weeks ago. I’d imagine the adrenalin kept you going through exams, then you stopped, changed your adrenalised routine, had a break and experienced the migraine ‘holiday’ backlash, this will still be going on. The other thing I have learnt with this thing is it never goes as quickly as you want it to. I can’t tell you how many times I have been looking at starting a new job whilst in a relapse and been panicking my backside off, thinking I am sunk. I have often had to start a job ill, I have sat at my desk (I work at home) or in meetings, ill off my face, only to find that if I grit my teeth through it and hang in there for a while, the symptoms eventually die down - can take a week or two, but the go. It’s not pleasant, it’s always scary, but it does seem to work. This wasn’t true when I first got ill and was utterly disabled by the illness for 2 and a half years, but I was undiagnosed and hadn’t found a medication that worked, I think with the right medication you should be able to get back on track.

Obviously there are situations in which people need to change drugs as it has failed to be effective any longer, but I don’t think you have been on your medication for long, so my guess is, if you up it slightly and hang in there, you will be fine. Keep repeating to yourself like a mantra, this too shall pass, I will be ok, etc…

Believe me, I know how rough it is, and every time I relapse I have to manage all the anxiety about it coming back for good. As yet, it hasn’t.

Victoria, can’t believe your neuro’s response. Obviously there is something he can do - change your meds! You came off the prothiaden,right? My friend who is on here sometimes found a drug that worked, came off it for a long, long time and then it was ineffective when she relapsed and went back on it. She saw a great neuro, changed drugs and is now back on track and back at work.

H

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Thanks so much for your replies. I am hoping that this will fade with time. I restart classes this friday and I am hoping that this will also help rid me of my symptoms. I struggled through work, as I have in the past…my motto is “fake it just to make it.” As long as I work, I think it helps keep me sane…lol. I definitely do think that work and being busy helps! I think thats partially why I recovered when I did. I had to go back to work after 12 weeks. I had a difficult time at first, but pushed through and ended up doing really well. Since that time I have not called out sick once.
I have upped my ami by 12.5 mg (half of my 25 mg tablet). Hoping this jump wasnt too much. I have been taking klonopin as well, and it seems to even me out a little. As for my spins last night, I just pray they dont return.
This really is a tough illness… I know we all have similar feelings…and are soooo envious of everyone else around us living their carefree lives. I also know there are people way worse off than us, but MAV is still pretty crappy.
Thanks again!
Hannah-just curious what meds you are on and if you have had to change them during the years?
Vic-I was so sorry to hear that this returned for you, but you are always so positive!

— Begin quote from "Hannah"

Victoria, can’t believe your neuro’s response. Obviously there is something he can do - change your meds! You came off the prothiaden,right? My friend who is on here sometimes found a drug that worked, came off it for a long, long time and then it was ineffective when she relapsed and went back on it. She saw a great neuro, changed drugs and is now back on track and back at work.

H

— End quote

Hi Hannah,

The neuro’s response was pretty deflating that’s for sure. To give him the benefit of the doubt perhaps he was saying ‘you’re a migrainueur, sometimes you’ll get sick, it will pass’. But to just offer Prothiaden and nothing else. Pffft. Pretty poor. By the time I see the new neuro I’ll have been back on Prothiaden for over three months, so if I’m still no better than then I’ll be asking for a new med, or med cocktail.

Jen, it’s certainly a bugger that I’ve crashed again (albeit with a few good days here and there). I had MASSIVE confluence of triggers that set me off, so it’s not a huge surprise (and I’d gone off all meds). Hopefully I’ll get well again soon! I always have in the past, eventually, so fingers crossed! I’m sure you will too.

Hi Jen,

I take propranolol, 80mg a day. The amount of drugs I tried to find one that worked is almost laughable. I had a horrible time with side effects.
I actually tried propranolol earlier on, but it seemed to make me dizzier. Then I tried it again some time later with no problems at all. I started very low and was fine on about 20 to 30 mg for a long time. Then every time I had a relapse I would edge them up. About a year ago I attempted to go up further, but I have hit the ceiling now, as at a higher dose they cause such profound memory problems I couldn’t work and function like that. So yes, I have stuck with this drug. Recently I have been thinking about changing for the simple reason that they do not over ride my flying in a plane trigger. I am in the ridiculous position of never being able to fly there and back to a destination without bringing on a big relapse. I am usually ok on the way, but flying lowers my resistance and then the second flight throws me over in to a relapse. It’s a huge pain, I love travel , so am wondering whether I bite the bullet and try something new. Although as you can imagine, I’m not keen to mess with what isn’t otherwise broken.

Victoria, I also recently had some nonsense from a neuro and am thinking of switching. I have been going to the same clinic for years and it’s been fine, but then they switched me to a different neuro, who I know from others isn’t exactly popular, very stuck in her ways, won’t listen to patients, patronising etc… She is refusing to entertain the drug I want and wants me to take one that has a side effect profile that I simply won’t consider, especially not as there are other drugs that are proven to be just as effective without the horrible side effects. I get every side effect going so if there’s something horrible associated with the drug I am a prime candidate for getting it. It’s a big pain.

I am sure one way or another you will get back to where you were before. It might mean changing drug but I tend to feel having once stabilised then your brain can do it again, just might need a bit of help. I hate relapses, it’s almost a more bitter pill to swallow when you’ve been well for a long time, like you’ve been let out of the illness prison, remembering what freedom from this rubbish feels like, then you’re slung back in in to it and it’s just intolerable. It’s such a time wasting condition.

H

Just thought I’d say, irony of ironies, after writing this message, the next morning ( I think, so dizzy losing track of time and sequence) was hit by vertigo and seem to be heading in to a relapse as struggling with some wicked brain fog, disorientation, spaceyness, the whole nine yards. Of course I have a big meeting on Monday - my brain likes to wait till I’ve got something important in the calender. Crossing my fingers that it’s a few days number rather than a few weeks. This illness is a great big pain in the backside. Just wrote this elsewhere, but it’s possible the whole fatigue/muscle aches thing which went on for 3 weeks and then cleared up was a weird, extended prodrome phase, who knows.

H

Hannah,
So sorry to hear! I think like you said stress and stress release are a major factor in this illness. I am what I like to call “teetering on the edge.” Not gotten significantly better, so now neuro wants to see me this week. I was hoping I could avoid him, but guess it looks like I will be making the trip in. I wasnt sure if upping the ami was giving me more symptoms or what, so I have gone back down to my usual 25mg dose. I havent gotten worse or better for that matter. I have trialed taking klonopin 1/4 to 1/2 of a pill which seems to help straighten me out a bit. I am hard headed though and don’t really want to be on 3 pills. I guess I have to suck it up and take whatever helps. I started my winter class this friday and saturday and survived! I did notice though this week the most horrible upper back and neck pain, that I have NEVER had before. I think this migraine thing is taking on a whole new appearance for me. Without jinxing myself the only lucky thing I have been a ble to avoid is my usual crazy visual aura.
Hang in there! I am trying to be good to myself and cancelled plans to go out with friends last night. It sucks being in our situation and no one seems to fully understand how we live day to day.
Keep me posted!

Jen

I’m interested in this topic but feel what was discussed here on this thread doesn’t really answer the question.

I’m not having a relapse, but genuinely curious about this.

Was your first episode the worst?
Was the second just as severe/long on meds?

I’m not talking about the day here or there that you have symptoms. I’m really talking about housebound, really sick, not working, can’t drive sort of relapse.

Interested to hear

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2 posts were merged into an existing topic: Bec’s Diary

2 posts were merged into an existing topic: Covid induced vertigo like I have never had before - VM or VN?

Guys let’s stay on topic. Personal discussions are better on diaries or intro topics. Stick to the question asked in the title if at all possible.