Struggling and fed up

New here, let me introduce myself 🤝
1

Hi everyone :wave: so I’m sure I’m not going to say anything different to anyone else on here, but if I don’t get it off my chest I think I might explode! Back in Feb i was sitting watching tv when suddenly I felt a sudden pain in my head and then this massive wave of dizziness come over me I felt like I couldn’t move! Anyway, from that night on I’ve never been the same. For 2 months after that happened I was having to be off work a lot, in and out of hospital, had scans, I wasn’t sleeping, my head felt awful and the only way I can describe the feeling is when you hear a really high pitched noise and it goes right through you?! Well that’s how my head felt. Thankfully now I don’t have that all the time and only when it’s really bad. The dizziness is what does me in the most, I’m exhausted by the end of the day because trying to focus on what’s happening is such hard work. My memory is terrible, I can forgot what I’m saying mid sentence, you can ask me a question and I’ll go to answer it and I’ve forgotten what we were even talking about. I’m struggling at work, I’m a manager and I have to keep asking my boss for help as I feel like I’m falling behind on everything. I’m in constant pain with my head, my neck, my joints hurt and I also have a joint dysfunction in my jaw where it feels like it’s being pushed to one side but it’s not, my speech is effected if I’m tired, in pain, had a long day. When it first happened I sounded like I was drunk. I’ve gained weight, my teeth are sensitive, I feel like my walking on a cloud most the time, my right leg feels heavier than my left when I walk and I have little strength in my arms and they ache after a short amount of time if I’m doing something slightly strenuous. Medication wise I was on amitriptyline and a strong antihistamine but I was just being knocked out, so I’m on 120mg propanolol and prochlorperazine for dizziness but they’re changing this as the main side effect is dizziness… They want to increase the propanolol again but I’ve had to do 7 days of blood pressure readings before they’ll give me another prescription and I’m suffering so badly. They’ve told me to not take over the counter medication anymore than twice a week but I’m also being told to take it for the pain in my jaw! I just want something that will help ease the symptoms so I can have a normal life.

I’m very aware I’m different now and it’s so upsetting. I’m worried about going out incase I have a weird moment (my head gets so bad its like it makes me twitch) or I get so dizzy and I can’t move. It’s embarrassing. Every other weekend I have my 3 step daughters come to us and I love them so much, but they’re young and loud and I have to force myself to be with them and go out with them when all I want to do is stay in bed and I can feel myself feeling snappy with them. As soon as I wake up I feel the brain fog and I’m sad, its a struggle to just get out of bed and I hate it! I never want to go out anywhere I just want to be home.
If I was able to I would probably never leave the house, I force myself to do things otherwise I know I’d never do them at all. I try to enjoy myself but I’m constantly thinking about how I’m going to feel after, is it going to be really bad? Am I acting weird? I hate it! I feel like all i do is moan about my head and how I’m feeling and I’m paranoid I’m being annoying to the people around me, I think I put on such a front that they don’t see how I’m really feeling, but I can’t be any other way it’s just how I am.

I have a MRI scan on the 28th July and Im more than sure it’ll be fine but it’s the last thing to do now and once that’s done I know I can fully concentrate on sorting myself.

Anyway thank you for reading this x

1 Like
2

Hello and welcome to the forum. I’m so sorry you’re going through this. I know from my own particular experience how this condition can drag you down physically and mentally. Of course you’re tired, of course you don’t want to leave the house. It’s hard to be in a body that makes you feel (suddenly) like you’re in outer space. I would urge you to remember that your body is your friend and the only way to live life again is to live it. Try your best not to isolate and find things that make you feel like you if you can. Hang in there and keep pushing. There is a way out, but it will take some patience and the diligent work you’re already doing.

1 Like
3

Thank you so much for this! Today has been a particularly bad day, so I think that’s why I’m feeling so down. Also, when you notice such a big difference in yourself it’s hard. But I have been looking into my diet to see what I can do improve this and I’m keeping on at my doctors to get me back on on medication again, so it’s always onwards and upwards from here hopefully. Thank you again :slightly_smiling_face:

1 Like
4

I don’t have much to add to stilldizzy’s comment, but I’m glad you found this site. It’s helped me so much. Just being able to write out all the weirdness to a group who understands was helpful. Reading the success stories gave me hope. Seeing that lots of people have up and down days helped me accept the fact for myself. On good days, I’ve learned to make lists and spell out routines so that on bad days I have some guide of what I’m supposed to be doing at work – My calendar looks like the stuff they used to teach 5th and sixth graders to keep track of school work. I used to keep all that in my head, along with ongoing projects and still be able to improvise when needed. Not so much anymore :melting_face:.

Simple movement associated with simple tasks that happen outside have been a lifeline on bad days. We all have different kinds of bad days, so it may not be your experience, but getting up, being outside, watering the plants, walking the yard, feeding the dogs – all this helps calm my brain. If you can identify triggers, that’s great. But I think it’s equally important to identify coping strategies, the things that make you feel even a little bit better, provide a sense of control again. This is helped relieve my anxiety about performing/functioning.

1 Like
5

Hi and thank you for your reply to my post. You’re so right, I’ve always loved a list but now my lists have times next to them so I can break down my tasks for the week. It’s such a weird feeling for me to look at a list and not know where to start, when before I’d crack on and make my way through it easily. It’s such a weird sensation to me to get so overwhelmed by something that seems so small, but infact it’s massive. My son and I are going to start walking most evenings, to try and calm down from our day and have a catch up, he’s 14 and so understanding. He can see when I need to stop what I’m doing and chill out. I’m definitely going to be listening to my body more and stop pushing myself on days when I’m really struggling. I need to have a serious chat with my husband as he knows it’s bad, but he needs to understand just how bad. I can definitely see a brighter future for myself when reading the success stories and it makes me so happy for people on here. I need to knuckle down and really sort myself out. Thank you for your kind words :slightly_smiling_face: I love having people here that know how I feel. Such a relief