I know I’ve been a bit quiet about whats been going on with me and the Lyrica since I started it in March after a horrendous MAV crash in february. I thought it was time to spill.
I was desperately ill and in the verge of losing my husband and children.I was living in a friends back bedroom, not working and virtually bedridden. I saw Dr Surenthiran in Kent and he reckoned I was one of his worst cases, but he prescribed pregabalin and it was nothing short of a miracle for me. I had a few setbacks during monthly periods but was pretty stable on 300mg and I’d say I was at 99% most days at one point. I went back to work and hardly ever needed to take clonazepam.I moved back home too.
Well about a week ago it all went t**s up and I’ve had the mother of all MAV crashes. I’ve been bedridden for nearly a week. I was supposed to be flying to Cyprus tonight to go to a cypriot wedding tomorrow and have had to bale out of that one. I’m gutted needless to say. I’ve upped the Lyrica to 400mg but no result yet.
I’m due to see Dr S again on 21st but meanwhile I’m just taking one day at a time. It’s all come at a really bad time for me. I’ve been lucky enough to get a secondment at work which starts next friday and I’m worried I won’t be better by then.
I’m getting lots of support from our lovely Muppo meanwhile; an angel if ever there was one <3
Dizzy Izzy xxxx
I’m due to see Dr S again on the 21st but meanwhile
Sorry to here you’ve had such a setback. Was there any reason that you can think of that caused you to have this setback? Hopefully you will recover within a few days from it. Sometimes when I have a setback, I’ll take it easy for a few days, then I start moving around again, even if I don’t feel like it. I notice if I take it easy for too long, I don’t improve as fast. You’ll be ok. I’ll keep you in my prayers!
There is a number of potential triggers for this crash. Numero uno being time of the month, added to which I’d had a great summer and needed to take my girls to see my parents before school started which entailed a long drive (by UK standards!). I remember I was driving into the sun for 2 hours and my eyes felt funny. Next morning I had a headache which developed into a ’ normal’ migraine. The dizziness started a few hours later. I often get stressed about going to my parents’ added to which I was apprehensive about my new job but excited about the wedding in cyprus.
Previous setbacks I’ve dealt with similarly to yourself. I’m really trying to kick myself into action slowly but I just keep feeling worse each time. It’s so difficult to cope with when you’ve got a family.
I’ll keep everyone posted.
Hang in there, just know that these blips will pass. For now just enjoy the weekend best you can. Kick back and eat some ice cream, watch a movie and forget about life for a while. If alcohol don’t bother you, I may add that in for the weekend too. But not too much. Stay as happy as you can.
Really sorry to hear you have had a bad time again (although I’m really pleased to read you are living back home again with your husband and kids, that is brilliant news). I know it must be devastating after you were almost back to normal, but you will get better again, even if it doesn’t feel that way to you at the moment. Think how much progress you made before, and how well you’ve overcome all that, and I know you will get through this rough patch as you’ve done it before. It’s also not too long until your appointment luckily, so hopefully Dr S will be able to help again. Although perhaps by another two weeks you will be well on your road to recovery again. I know a few people (but can’t remember who, sorry!) have said they’ve recovered more quickly after subsequent bad bouts, so hopefully it will be that way for you. Take care,and come on here and rant and get it all out of your system, cos everyone on here knows what it’s like/how horrible it is, and we can all support each other in the tough times.
Oh Dizzy Izzy I’m so sorry to hear this. It’s soul destroying after a good patch to go downhill again. I always think I’m never going to get back to where I was before the latest MAV crash but I inevitably do. Remembering that always gives me comfort of a sort. Sometimes it happens quickly, at others I just have to sit it out a while but thankfully I always seem to get back to baseline. And you will too.
Only this week I had to miss going to my mother in law’s funeral because of the appalling timing of a waking vertigo attack. I felt terrible and angry and every emotion you could imagine, so I fully understand how you’re gutted at missing the wedding. It really sucks doesn’t it?
Like the others have said, try to chill as best you can. Don’t overthink it, live in the moment for a short while til you’re feeling better. It’s hard with a family too, I agree. My kids are grown up now but I really struggled when they were younger to be a “good mum” but boy, was it hard with MAV!
Don’t be too hard on yourself. Sending you a hug and lots of love…
DizIz - I’ll be here for until the cows come home! You are my friend and I’m praying every min for your speedy recovery.
I’m so sad I’m crying.
DizzyIzzy, Im so sorry you are suffering again I agree its the most difficult thing when you have a family. Im a stay at home mom with 3 kids, my youngest is 5 months and its so hard to know how your days will be. I have also had a mini crash of some sort, or Im coming down with a cold but I have not been this bad since I got hit with this 3 months ago. I pray you will be back to normal soon and hopefully upping the Lyrica will help. Im glad you have support from Muppo on here, I know it means a lot to have good friends, especially someone who knows exactly what you are going through.
Thanks guys for all your supportive posts. I’m really touched
I’m seeing a speck of light down this tunnel. Today I got dressed, washed my hair and actually sat in the garden for the ten minutes the sun was out :lol:
Tomorrow I hope to go on a nice walk with my family.
Oh, that’s great. So pleased to hear of progress. Trust the walk goes well and lifts your spirits further.
Dizzy - sorry to hear that you’re having a bad time - I think it’s worse when you’re been okayish for a while and then BAM! i’m on 400mg pregabalin too , but staying around 85% well and still not back at work full time. Neuro told me no more increase on pregabalin because I’ve put on 3 stone! So they’ve put propranolol in the mix too!
Just remember you’re tough and you’re on top of this thing - it’s just trying to have another go at you, but you’ll beat it!
Hi, I’m sorry to hear about the crash. It does seem to happen when you do too much or for no blood reason. Give it time rest and it will even out. sounds like you need another drug to clinch the deal . Dr S will have the answer no doubt.
just had the most logical thought up the dosage , you ve way to go yet
So very sorry to hear of your crash. That really sux. Especially when things had been on the up and up for you.
When you said you were driving into the hot sun that really struck a chord with me - hot, glarey sunlight is a killer for me too. Add to that the stress of seeing your parents and it sounds like too much for your migraine brain.
Although early days it’s encouraging that you’ve managed to do a few things and get outside. I really hope things pick up for you and wish you a speedy end to the crash.
Tracey - it’s good to get an update on how you’re going. I was wondering about you recently as a fellow Lyrica user. Is your neuro Dr Silver up in Liverpool or somewhere - I once worked with him many years ago and see he’s quite a big cheese now in the Neurology field and migraines in particular. I downloaded his talk and listened to it about a year ago.
I think try another drug on top of the Lyrica may be the way to go. It seems L isn’t very good with hormone fluctuations.
Fiona - I only recently upped the dosage from 300 to 400mg which is like a 33% increase overnight so probably need to stay on 400 for a while. The weight thing is bizarre! Initially I lost weight probably cos I was manic. Then after being stable for a while on 300mg I noticed my weight had crept up by about 4 lbs. Then it was pretty static although I definitely wasn’t eating as much as I used to and I was exercising quite a lot. Then this past week having increased to 400mg it’s gone up another 5lbs in one week! I’m really hungry every morning when I wake at 5am so I have to have breakfast. Then I go back to sleep and wake up later and have a second breakfast (!). I crave carbs esp sugar. So I’m cutting the sugar out and having soup for lunch and a smallish evening meal followed by a bit of fruit. Then I’m starving by bedtime so I either put up with it (knowing I’ll be having breakfast at 5 am!) or allow myself 2 oatcakes.
Interestingly it’s not very clear where this extra 9 lbs is being stored. Strangely, the place where I ususally tend to put on weight is my middle, but no, my waist is the same so I was hoping it meant my boobs were bigger, but my bras are still fitting me. My husband said I didn’t look like I’d put weight on, but the scales don’t lie so I stripped off and asked him to scrutinise my body in detail (a bit like those awful programmes where the presenters get people to strip off in front of 360 degree mirrors). The curtains were definitely closed! Anyway, I was hoping he’d say I’d got more up top now but no. He reckoned it had gone on my bum! :shock: Unheard of!
Anyway, after a night’s sleep I’ve calmed down a bit and am gonna revel in being bootylicious :lol:
Now my task for today is to tackle Sainsbury’s. :shock: AAAARGH! (That’s a supermarket in case anyone’s not familiar). Going to arm myself beforehand with half a clon. Once more unto the breach dear friends, once more…
Hey DL –
I’m so sorry to hear all of this new s**t you’ve had to go through again. What a drag that it had to screw up your trip to Cyprus.
I was apprehensive about my new job
I’m thinking this may have been THE trigger. It nearly destroyed me back in April when I began my new job … but I recovered again completely although it took about 4-6 weeks. You’ll be fine I think if you can get things in order again … no reason you should not return to baseline with Lyrica and a benzo as your weapons of choice.
I sent you an email re your new name.
Hang in there champ.
DizzyLizzy - yes my neuro is Dr Silver. What a relief it was to find him! He has written to me recently and given some more drug ideas to add in with the Lyrica, so I’m off to the GP on Tuesday!
Take care x
Hey Tracey, I’d love to know what drugs he’s recommended!
From what I can understand on the letter, he’s telling me not to increase the Lyrica anymore and add in one of the following:
1st choice: Topiramate
2nd choice: Zonismide
3rd choice: Propranolol
However, he says that if I still have restless legs to add in Sinemet, if no restless legs go for Topiramate first. he goes on to say that if this works start to start slowly reducing the Lyrica.
I’m at the GP’s tomorrow, so hopefully will have a go on something! One of my other problems is that i was seeing a different GP each time I went(big surgery), he has stated that I must see the same GP and see them regularly. He also adds that he thought I would have moved on with differnt trials by now, but my GP didn’t really try anything! We’ll see how it goes tomorrow.
Take care x