My 100 steps forward, closely followed by 200 back

Heres the snap shot. This week i had 2 great days- the best Ive felt in 11 weeks. But as expected, this was followed by going back to normal badness today. I’m confused and need to rant and vent so i thought id do it here in case anyone has experienced similar and has any advise on how the feck to stay sane!! :oops:

Over the weekend I had a bit of an emotional breakdown. As the weekend went on, I started to feel a little better as I went ti stay at a friends. On Tues, I had my neuro appointment, so I got up about 3 hours earlier than I usually would to trek up to town. I expected to feel horrendous. I didn’t. When I saw him I told him that the first 5 days on amitriptyline were hell, but that since then it’s calmed down and has knocked out the crushing headache and some eye pressure. What it has not done is knock out any of the nose throbbing, other facial pain, dizziness, visual problems, tinnitus or ear squelching. He said he wants to keep me on the same dose of amitriptyline and see how I am when it’s built up a bit more. Come back in a month. I was surprised. I thought he’d up it but nevertheless, good news I spose. I also mentioned vrt. He said Its worth a go. Though I thought you needed testing before his so they know which ear is affected, although I guess if it’s central related ie the brain then maybe you don’t.

Anyway fact is, after that me and my boyfriend walked to Oxford st as he wanted to go in some shops. Shops are usually awful for me, but I tried it, and I found it ok. It was as tho being distracted by pretty clothes was a fickle enough reason for my maving brain to calm down :slight_smile: it was such a defining moment for me to be in an environment where I’d previously not been able to hack, that I felt so elated!!!
I was on cloud 9.

Yesterday, I was in the flat for the first half of the day, and I lied in bed til 130pm :-/. I didn’t feel too good in the flat so at about 430 I drove to the shops to do some boring shopping… Bin bags, milk, etc etc! Anyway, although to start with, I didn’t feel right, I became much more relaxed and felt less dizzy and spaced out, as I became distracted by the bargains in pound land! I felt again, like the day before. It was fantastic. ( and who knew they’d sell both spice girls album on cd in there! I had those bad boys on cassette only 15yrs ago… Disclaimer: I’m not a spice fan, I just wanted to have the cd in my car to reminisce about my long lost youth)

Today, I woke with a mild headache. My grandparents came to take me out to lunch. The headache stayed, but I managed to sit in a pub for the meal and chat. I was sat next to a window and in hindsight, prob should of moved as the light affected me a bit, but anyway, it was great, but the headache didn’t shift. I felt sleepy. I came home and since I got here, the headache is still there and I have a greater pressure than usual behind my eyes. Suffice to say, I am absolutely distraught and gutted to have had a fantastic 1.5 days followed by a return to before. Iv even had a couple of spins today so I know it’s def got worse again,

It’s so hard to take. I know everyone says 1 step forward, 3 steps back is how it goes… But that just doesn’t make it any easier to deal with. :frowning: I tried to talk to my mum but unfortunately she just told me to cheer up- she’s About as compassionate as a brick. It’s totally knocked the stuffing out of me.

Why have I got this headache?? And yet iv been headache free practically for a week now. (always a low level baseline head ache but not like this). Iv thought about triggers- maybe it was cos I drank a glass of sprite, not enough water, or maybe because I ate spaghetti?! I mean, I can’t see an obvious trigger…

I’m scared the ami is stopping working. That it was temporary and now needs a booster.I’m scared I won’t see a day like that again.

Do you guys think that being distracted and getting out and about directly helps your head??? Not just your mind, but literally your brain?

I know I should be pleased I had these good days and take on board that this takes time to recover from and that eventually the good days will outweigh the bad. I know, but now I’m left obsessed by trying to find a trigger and feeling like I did something bad to be punished with this.

Head hurts, not fun :frowning:

This illness is so very cruel. :evil:

Xx

Ps does Anyone else have that problem of not being able to find the right word??? It’s driving me maaaaaaaad!

missmoss,

Having setbacks here and there while trialing a med are expected with this junk. But the good sign is that you felt normal for a few days while on this med. I would say this med is gonna work for you in the longrun. The migraine is trying hard to stay with you and the med is battling it. I think there is plenty of good signs that you’re getting better.

You could add some magnesium and other things like a vitamin b complex and try and get about 8-9 hours of sleep per night and drink about 3 liters of water a day to help battle it too. The more you can do yourself, the less of the med you’ll need. KEEP THE STRESS LOW! Migraine loves stress. Doing this along with the med, you may find your setbacks get a lot less and normal days lasting a lot longer. Until one day normal is all you know again.

It takes a proper 4 months to know if a certain med is useless. You may try to up the dose too if you think you need too in a month or so. Don’t worry about your setback though. Just think of it as part of your battle that you won’t lose in the end. Migraine may have the lead now, but when you were on Oxford st it wasn’t. You can beat this and I think the amitriptyline is a huge weapon in your favor. Stick with it.

Greg

MissMoss - hang in there! IT’s so frustrating to have setbacks like this but if you can focus on the fact that you had a couple of good days - this is a reminder that it IS possible. I’d say it took me close on 6 months before my med really started to work, but it DID start to work. Agree with Greg that the magnesium and vita b2 is worth a try if you’re not already taking them

oh and when I’m bad I too have problems with word finding so you’re not alone in that either :?

Hey Missmoss,

It’s all part of the process. Every day that goes by you will feel better for a minute longer then you did yesterday. Soon those minutes will be hours, those hours days, those days weeks and so on. Don’t get discouraged by set backs, It happens to everyone. Just work on the building yourself up when you’re down and soon the bad days won’t seem so bad and then non existant. You now know you can handle whatever it’s going to through at you. Take advice from one of the greatest bands in the world… CHUMBWAMBA! " I get knocked down, but I get up again, you ain’t never going to keep me down"

Deekon

Love Deekon’s response! That was a good song, and you mentioning it brings back memories as I was in college when it came out. Lou- kinda like your Spice Girls CD!

This “illness” has been a rollercoaster… of emotions, of dizziness, of good days and bad ones. I try to stay upbeat, although difficult at times…actually when I have found myself getting upset, I tend to spin more, sooooo I decided I can’t do that anymore. Yes we are dealing with debilitating symptoms, that no one understands. We look normal for the most part, and people think…what the h*ll is wrong with her, she looks fine. Some people even think the dizzies are just from anxiety…and to just move on and get on with life. If they only understood. Feeling ill is tough enough to deal with.

I do feel that getting outdoors, fresh air, does make me feel better. I proved this to myself while away. If I felt like I was spinning, I would rest but after so long I would get up and move on. Sometimes we would head out for a walk, sometimes head out for dinner. What I realized was that as soon as I was up and moving, I didn’t feel like I was spinning anymore. (its not fool proof, but it worked) I have also noticed that when I am in the water I feel quite “normal”. It makes me feel straight! Lucky for me I have a pool, so I try to go out daily and get my “normal fix.” You need to find something that you enjoy doing and see if it helps.

As for the med…keep pushing through. There is no way to tell if the medicine is going to work if you don’t give it a fair chance. Chances are you will find it helps you as evidenced by the 2 glorious days you had. Believe me, I and probably everyone else here have felt the 1 step forward 2 steps back. I think its pretty “normal.” (not that word again…lol)

Soooooo… keep your chin up. Get outside…go for a walk…go shopping. Do whatever it is you need to get through this and take the steps forward. I look at it this way: I already hit rock bottom (as I am sure you can agree), so there is no where to go from here but up!

Greg… Your response was bloody fantastic. Thank you very much.

You bought up a few things I’d not thought of at all, particularly that as I had a few days of normal on the med, it hopefully should work in the longrun. I also love your expression as the migraine trying hard to stay and the med battling it… Brings up a funny image in my mind of a giant ami tablet with a club in it’s hand, whacking an ugly monster with an evil grin :slight_smile:

I just went and grabbed a load of magnesium from the health store… Does anyone know the usual starting dose?

chumbawumba… I love it! That made me lol Deekon. And your advice about building yourself uo when your down is great. But c’mon Jen, it’s no match for the mighty spice girls :wink:

I’m glad someone else feels less spinny when up n about, but one thing- do you find a day or two after, you feel a bit crap n wonder if you did too much?

I hope for ‘normal’ soon!

Thanks guys. Don’t know what I’d do without the support of ‘my dizzy friends on the internet’ !

Xx

— Begin quote from “beatles909”

missmoss,

Having setbacks here and there while trialing a med are expected with this junk. But the good sign is that you felt normal for a few days while on this med. I would say this med is gonna work for you in the longrun. The migraine is trying hard to stay with you and the med is battling it. I think there is plenty of good signs that you’re getting better.

You could add some magnesium and other things like a vitamin b complex and try and get about 8-9 hours of sleep per night and drink about 3 liters of water a day to help battle it too. The more you can do yourself, the less of the med you’ll need. KEEP THE STRESS LOW! Migraine loves stress. Doing this along with the med, you may find your setbacks get a lot less and normal days lasting a lot longer. Until one day normal is all you know again.

It takes a proper 4 months to know if a certain med is useless. You may try to up the dose too if you think you need too in a month or so. Don’t worry about your setback though. Just think of it as part of your battle that you won’t lose in the end. Migraine may have the lead now, but when you were on Oxford st it wasn’t. You can beat this and I think the amitriptyline is a huge weapon in your favor. Stick with it.

Greg

— End quote

Babe you need Magnesium Citrate - not the cheap sh*t. Make sure that’s what you have bought.

I take 400mg a day but started at 100mg per day for a week and moved up.

I also take:

Gingko Balbon 120mg split dose
COQ10 120mg
Vit C 1000mg
B100 Complex

Just because you are having setbacks doesnt mean the drug has stopped working. I have huge setbacks all the time but remember - I’m still better OVERALL compared to where I was.

Today I would like to chainsaw my head off. :smiley:

Oh b*llocks!! I’ve got magnesium oxide… What’s the difference?

Do you take these supplements based on what you found out yourself or did Dr S advise on them?

Don’t chainsaw your head off mate… That’d be a bastard for your poor bloke to have to clean up :slight_smile:

xx

— Begin quote from “Muppo”

Babe you need Magnesium Citrate - not the cheap sh*t. Make sure that’s what you have bought.

I take 400mg a day but started at 100mg per day for a week and moved up.

I also take:

Gingko Balbon 120mg split dose
COQ10 120mg
Vit C 1000mg
B100 Complex

Just because you are having setbacks doesnt mean the drug has stopped working. I have huge setbacks all the time but remember - I’m still better OVERALL compared to where I was.

Today I would like to chainsaw my head off. :smiley:

— End quote

Citrate is higher concentration and a LOT better than the others… A LOT.

I take these based on my own reseach and what these guys on here have experimented with.

My take is this:

Morning
200mg Mag
1000mg Vit C
60mg Gingko
COQ10

Evening
200mg Mag
B100 Complex
60mg Gingko

All with food.

Then I take the Nori right before bed. I’m moving up to 45mg 2nite - wish me luck!!!

I know what you mean about the mess - but if he loved me he’ll clean up right?? :smiley:

Missmoss,

Yea sorry I forgot to tell you what kind of Magnesium to get. Muppo is correct on magnesium citrate, that one has the best chance at getting fully into your system. I’m just glad I can help you. I think you’ll be alright. Just give it sometime.

Greg

i more good days you have the closer you getting to going back to normal so hang in there.i think if you are able to go out your all readt doing very well.
Jen thats interesting you feel normal in water as so do i, takes about 15 mins,wish i had a pool id be living in it, loved to know how many more have this experience.

yep…it’s been like that for 3 years. I also agree about not being able to find the right word…mind you it could also be the meds…keep going girl…at least there are better days.

Dont let a setback pull you down !!!

W’ere all in this together and I think most of us agree that once you hit the bottom, you WILL go up from here. Allow me to share my story with ya (:

Last friday was the first day that I had felt a little better for the first time since MAY. I then started to feel bad again Saturday. I’ve had one good day so far this week. I have no idea why I’m starting to have better days again, but I am thankful to have them. I think it’s the brain fog that is a pain in the a55. Your days will improve hun, just give it time and you will start to feel better (:

Thanks everyone for your msgs… Have had a really shit distraction from mav this week as a very close friend is seriously ill in intensive care. Haven’t really consciously given the mav any thought very much but I have read this thread thru the week. My friend has been there for me from the start of my mav in such a big way and now I feel so guilty that all I’ve been doing is whinging on to him about my symptoms prior to him being rushed to hospital, which all seems so irrelevant in comparison to his situation right now.I’ve learnt so much about the frailty of health in the last few months and obviously in the extreme this week in particular, and I find myself really angry at the world that suffering and illness is so rife. Life is hard and confusing. I’m crossing my fingers for a miracle for him and I’d willingly have the worst mav for the rest of my life, if it would help.

I’m trying to stay healthy and have looked at vitamins. I’ve swapped magnesium oxide for citrate and bought a load of riboflavin /b2… I know Muppo started the mag on 100mg to start with n went up so il do that… But can anyone advise me on starting doses of the vitamin b2 pls?

Thanks guys and hope you’re all not having too much of a bad weekend,

Lx
L x