Is this my new baseline now

So Im still on ami 20mg and now on pitzotifen 0.5 been taking that three days so far.

Im still trying to get my head around my new dizziness its not what I used to get before I had my son a few weeks ago.

The symptoms are so bad when I walk and Ijust dont know why I basically cant walk in a straight line and amd so dizzy when I walk everythings bouncing.
If I lean over I feel like Im just going to fall and spin its so scary I hate getting up to walk at all an its been like this everyday for 6 weeks! Im thinking this could be my new baseline as its not getting better or improving at least with my old dizzys I had good days and I had no problems walking I dont know whats happened to me and I dont see how meds can fix it at ALL.

Im scared guys this is my new baseline I wont be able to work or go out the door to do anything :frowning:

When are you seeing dr s?

Are you on the dirt?

0.5 is a low dose of pitz

Base lines change!! You will get there trust me

I cant see him till january now at the earliest i just cant afford to do it yet money doesnt buy health but it helps!

The diets done nothing in 6 weeks nothing i do works Robert

Hi Blondie,

I know exactly what you mean- for some reason in August, my baseline of balance went completely downhill. Before, I didn’t need a cane to walk, and wasn’t in pain from walking wrong, had no problems getting out of the house. I asked my neuro what might be happening- he of course had no idea. All I can think is that maybe our migraines have “ramped up” or something, and maybe we need a higher dose of a med, or to add a new med or 2 into the mix. I know how upsetting this is- I had this stable baseline that I had come to expect for almost 2 years, and then all of a sudden it changed…it blows.

Hi Blondie,

I forgot to ask if your actual dizziness has gotten worse, or is it just your balance? For me it has just been my balance, which I guess I find odd- I would think everything would get worse?? Since August, I have had maybe 4 good days sprinkled in, but that’s it- I am so confused and I wish these supposed experts had some answers for us!

Donna, has your dizziness been just the same for these 6 weeks or do you have some days or parts of the day where it is a bit better. Even when I have been at my worst I usually have slight fluctuations in the severity of the dizziness during a day. I know what you feel though, I had got used to my baseline then this summer it went so bad and I cannot work out why. I also never used to get proper vertigo and now I have had these awful spinning attacks. Do get the proper room spins? I don’t get why it changed into that but I find it so scary. You never know when they will strike and I’m even scared about going to sleep cos they happen in the night sometimes. How is the piz? I guess it’s a bit early to know if it’s helping yet…xx

Sarah when you say a difference between balance and dizziness, do you mean that your head doesn’t feel dizzy and swimmy or not too badly but your body won’t keep its balance. I kind of know what you mean and I’m just trying to work out the difference, all of these symptoms are so confusing and weird. I just wish we knew what exactly was happening in our brains and why…

Sarah totally get what you mean for me I dont think I will fall just feel like I will the floor doesnt feel fixed/flat to me now I guess its marshmellow legs.
The actual dizziness in my head was totally horrendous in September is mild now I think the amitrip helped that but as soon as I walk around the fun starts why would it do that!
Jem its like it 24.7 different severity sometimes but there all the time its so worrying as cant see how meds could help it.

Ive had the spinning since day 1 when it started its always come and gone and I think vertgo is the worst as you cant function at all.
ive ha spinning this time but more positional in nature I used to get it all the time though especially waking from sleep and I would totally shit myself and freak out it hasnt happened this time but when i walk Ive got a mild vertigo the room isnt catching up with my head so the rooms kind of spinning/swaying as I walk.

Ive wracked my brain thinking back through my many relapses and I do think Ive had this before but not as severe and short lived. Why do symptoms change? I cant get used to this if its my baseline as I cant function in the outside worl with it. I think my hubby may lose his job at this rate. The pitzotifen I cant say if its working yet its only been two nights at 0,5 an I need to be at 1mg if it helps though I will let everyone know xx

On a better note I can sit up properly now at the kitchen table etc I couldnt September but its the walking thing xx

It does sound like the symptoms are changing Donna, which is good because if they can change they can get better. I know how horrid it is though when you get a new symptom. I find it so unpredictable. I can’t really function in the outside world either. I have done a few more things recently but I am so restricted and so scared about how I feel all the time. Why will your husband lose his job, do you mean because he has taken time off to help you at home? It must be tough with young children. I hope the pizo kicks in soon. I am sure it will help as it has helped many people with MAV xx

Jem he has to keep coming home from work as I feel so bad and struggling to do the school run if I do go Im as quick as possible but honestly the whole thing of getting to the school and staning in the playground is just horrendous.

I just rang my mom and told her I just want to commit suicide as I cant see a way out of this or why my symptoms have changed and gone so bad and its relentless too no relief from it.

Dont know how long I can carry on in all honesty xx

Gosh yeh I can imagine standing in the playground must be hell. I can’t face talking to anyone when I’m like this, it makes me so dizzy and then I panic and think I’m going to have a vertigo spin. I dread ever bumping into someone I know. That’s the worst thing feeling so isolated from other people. You just want to be on your own and keep still when you feel dizzy. It’s so frustrating cos you want to talk to people and be normal but your head won’t let you. I don’t know if everyone feels like this or if I just got a really bad case of this.

I have said the same as you to my mum many times. I suppose she will tell you not to be silly and that you will get better. It’s so hard to believe it though cos every day it’s still there the same. That’s why I am going to Dr S because everyone who sees him seems to have a positive attitude towards this and if I can’t beat it then at least I need to find a way to cope with this mentally. If there was a way to just push a button and end it all I think I wouldn’t be here anymore but I just don’t have the guts to kill myself and believe me I have thought long and hard about it. I guess that will to live is just too strong somewhere. I am sure it is the same for you. I think you will carry on fighting this too. We have to really, we only have one chance at life xxx

yes Jem your right.

I find it hard to talk to people and they come up to me in the playground to speak and I must look so rude coz I give one word answers and avoid people at all costs and my personality is outgoing and bubbly but this illness has changed me to someone I dont want to be. I feel like Im going to fall standing there or like you said start spinning and everyone would see, I literally shake having to endure all of this by the time Im back at the car Im sweating and having palpitations.
I even find it hard to talk to my husband if I have to stand up and my kids I feel so bad Im short with them lately and cant handle stress if one of thems crying or sking me for something I get so stressed and just want them to shut up or be quiet and I know that sounds terrible but the dizzys make me like this.

Ive thought about getting in the car and driving into a tree or something but knowing my luck I would just injure myself and still be dizzy but injured too! lol Its not even funny but I bet if I tried to kill myself I wouldnt do it properly and end up worse than I am now!
I hope Dr S sorts you out I wish I could see him but cant afford it this side of Xmas its not so much the cost of the appointment but I would have to stay down there petrol etc I just cant afford it yet. I would see him tomorrow if I had my way as I need some hope right now.

I know it doesn’t give you any answers but I can only say you are not alone. I am just the same! I don’t have kids but I would find it so hard if I did. I give one word answers, I am snappy, I get irritated by little things. I can’t be myself or say what I want to say. Then I feel guilty about it. I physically shake if I try to do too much. I was like that all through my sister’s wedding, shaking and it’s not nerves, it’s the effort of trying to do stuff that my brain doesn’t like. During the first year of having this i went out in my car one night at midnight and thought about doing what you said and felt just the same. What if I just ended up injured and even worse. I couldn’t do it. Another time I sat by the canal all evening just thinking about jumping in. I couldn’t do it. I have never been brought so low by anything in my life. My nature is to be happy and calm but this changes you. People who haven’t been through something like this could not understand the depths it takes you to. I will share with you what happens at my appt with Dr S then you will have a good idea of what to expect if you then decide to see him when you have the money x

I think you def need to see the right doc ( i see Dr S ) to get some help with your meds and put a plan in place for you.

dont know your financal situation but can you get a interest free credit card, pay for the first private appt on that, then book in some NHS appts afterwards?

Its no wonder you are struggling, dont be so hard on yourself - you have just had a new baby, no doubt not getting regular sleep? and hormones racing everywhere…its likely only MEDS will help with this so you need to see the right doc asap. It sounds like you have a busy life with kids, a new baby and trying to manage a currently unstable chronic illness. I have 2 kids under the age of 7 and really struggle with this and them some of the time.

Jem - are you on facebook?

Yes - I can PM you my details

thanks - do you just email me through my username?

Yes, if you are logged in you can see your private messages through the user control panel, it tells you how many messages you have and you can send to others from there too x

Hey Blondie,

I’m sorry you feel so awful.

— Begin quote from ____

I just rang my mom and told her I just want to commit suicide as I cant see a way out of this or why my symptoms have changed and gone so bad and its relentless too no relief from it.

Dont know how long I can carry on in all honesty xx

— End quote

This quote from you is really sad and struck a chord with me as I’ve been there too and I know how helpless you feel with no way out.

Like someone else said though, Dr S does seem to be able to instill a level of positivity in his patients and I think that is very important with us in managing our illness. I know you say you can’t afford to see him but is there any chance at all that perhaps you could ask your family to instead of giving you Christmas presents this year, they give you cash so you can put it towards an appointment with Dr S? I know sometimes people don’t like to ask for money or things like this, but your family love you and they surely want to be able to help you.

Hugs xx

It seemed slightly better today not being dragged inside my head so much I managed to pop into the supermarket and pick up a few bits it was very difficult and my Mum came with me so I linked her arm but at least I did it even though I did feel like a 90year old the whole time x

Im on day 4 of the pitz now I think its helping a bit hard to be sure but I think it is a bit. I so hope this is my sliver bullet and doubling it friday helps more I will sit at that dose then for four weeks to see what happens.
I have got this weird thing at night ( I wouldnt notice it if I didnt have night feeds to do) but it feels like spiders are crawling on my face like its tickly I rub it so much thinking somethings crawling on me but thats the only side effect.
No appetite increase as yet but Im so stressed and depressed I probably wouldnt notice will let you all know how the pitz pans out xx