Essential tremor. Really getting me down. Need advice

[Ririgirl95]

I’m pretty sure I have a tremor. My mum has it quite bad and my granda also had it. I notice when I get really nervous I would literally shake so bad not just my hands but in my head for example if I was arguing with someone it would be so bad or if I’m at a interview anything basically that raises my anxiety levels. But it’s kind of effecting my life because I couldn’t go and get my eyebrows done/eyelashes done/ hair done because I would not be able to keep still, unless I was drunk then the shaking stops altogether 😂
I also notice it more now because I do a hairdressing course and we sometimes practice on each other and sometimes I just have to tell the teachers no because I just know with everyone shaking my head would shake and it would be so embarrassing.

has anybody experienced this before? I feel like I wouldn’t be half as anxious or anti social if I didn’t have this 💔 I’m only 30.
P.s was also just at the doctors today about it and they tbh didn't really do much about it. They made me follow there finger and they did notice my head shaking etc. done some other tests aswell which ruled anything serious out made me touch my toes standing up etc. she just said it's part of who I am and booked me in for a talking therapy session about it in a month.. not sure what help that will do tbh. I take propanol for it but I was given that years ago for anxiety but I find it doesn't do much. I can't take a high dose of it either because I always suffer with low blood pressure. So always only take about 20/30mg.

Thanks for listening guys it is getting me down. Also the only thing that takes it away is alcohol. If I'm having a couple drinks it completely goes away. Which is annoying because in social situations I find myself drinking more which isn't a good thing.

OP- Even IF your daughter does get it, at least you/she can be aware from an early age and implement calming techniques. There might be more treatment options then too- but obviously I'd hope she isn't affected x

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Your symptoms sound pretty bad OP. My DB, DF and DGF only had/has it affect their hands. I do think yours warrants a referral if the other drug isn’t appropriate or doesn’t help . From the above link it does sound like there’s more heavy duty treatment in the pipeline. Not sure how available this is or what the criteria are to be referred for it etc.

I think my daughter will get it because I got it from my mum and my daughter is literally like a little mini version of me so I bet she has most my dna and genes

Is yours and your kids constant would yours happen even if you are sitting alone?

Ive taken to being quite blunt when someone says 'oh you're shaking' or make some jibe about being nervous.

No I have tremor. Said very bluntly straight in the face.

Some people dont even know what it is. Ive found Im much less affected by it emotionally since Ive been saying this.

It affects my voice too and it sounds like Im about to cry or Im angry or something. Worse in the mornings I find.

This is true cause she's only 4 now, I didn't notice symptoms till around 16/17

I’m in my sixties. In started in my thirties. My dad had it so I knew what it was. Like you alcohol helps. If it’s any consolation none of my children are showing signs of it yet (in their thirties). It’s not a given. I used to take beta blockers when I had a presentation which helped. Definitely magnesium also helps though. Solgar Chelated magnesium is the best I find.

Oh and also the dentists is a nightmare, especially when having an xray, the one where you have to clamp something between your teeth didn't work for me, because my head was shaking so much, and the one where you stand up and rest your chin on it was just as bad!
As a result, I only went to the dentist if I was in agony
As it is now, there are no NHS dentists available where I live, and I cannot afford to go private, so that's taken the dentist issue away- sadly my teeth are suffering though.

Its affected my career choices as well, I wanted to become a midwife, but was worried about using needles in case my hands were too shaky.

It sounds highly likely that this is benign essential tremor with a strong family history to support the diagnosis.
I think the most likely thing is that your GP would do an ‘advice and guidance’ to neurology to ask advice regarding other medications to try in your individual situation.

Sadly OP I would think very seriously about career choice as this may get worse with time. My best friends mum had a very bad tremor and had to stop working as a hairdresser

I always joke that I'll never be able to be a shopping channel presenter, imagine holding all those things up to camera to show the viewer!

@Ririgirl95 my tremor still happens when I'm sitting alone, same with my daughter, although it's much less pronounced.
My daughters started to become obvious when she was very young, so your little girl may not be affected as much as you think.

@soupfiend my daughter likes to joke about her tremor as well, it helps her cope with it, and tbh it helps me too, it's just taken me so long to come to terms with it.
My dad has it on a lesser scale, so my parents just assumed I'd inherited my 'shaky hands' from him, as I got older though, it became mortifying, especially as a teenager, and I was never taken to the dr about it, so I couldn't offer any explanation when I was younger, I just got embarrassed

Yes, I would definitely push for a referral to neurology. Just because it's not curable, it doesn't mean it's not treatable.

My symptoms are mostly shaking in my legs, arms and hands. My head doesn't shake but I feel like I'm shaking inside, if that makes sense? It's worse if I'm tired, anxious or if I stand for too long. It is fairly well controlled with the meds but I've been trying to reduce them recently and have noticed it more.

Mine is not in my family and actually started when I was on Prozac, so it's a firm no from me to SSRIs and SNRIs. I came off Prozac very slowly and the tremor improved a lot. Then 6 months later I was struggling with my mental health and my GP gave me Duloxetine (an SNRI). The tremor got significantly worse again. I stopped the Duloxetine after 5 weeks and the tremor didn't start to improve until two months after I stopped it. Those meds stay in your system so long! I was lucky that my psychiatrist did a consult with a psycho-pharmacologist, who recommended Valdoxan. I've been OK on that.

Yes its only as Ive got older and more confident, probably peri menopause that Im a bit brazen about it. Also about 10 years ago I had therapy about other things but she focused on that quite a lot becuase of the embarrassment of eating and drinking out, it was affecting my life in that way and the therapy really helped, it was compassion focused therapy.

What age was your daughter x

This is what I'm thinking! And I'd love to do hair 🥲 I paid 400 pound to take on this course to, and I actually think this is where I've noticed it worse, I'm always terrified incase my teacher says for someone to practice on me hair,

Also you see when I get nervous it honestly looks like I'm taking an epileptic fit. My whole body shakes really bad, like if I was to get REALLY nervous say for an interview, I would barely be able to speak and my whole body would shake. Awful. Has anyone took primidone on this thread. ?

My whole body shakes really bad, like if I was to get REALLY nervous say for an interview, I would barely be able to speak and my whole body would shake. Awful.

I'm sure this would be classed as a disability/protected characteristic OP, and technically shouldn't be discriminated against. Do you notify people beforehand that you have this condition, such as when they've booked a job interview? If you saw the dentist- do you tell them? Personally, I would think it much better for them to know that you aren't indeed having a reaction or seizure. They also might have measure to mitigate the movement. For X-rays/scans etc, there are wide, velco straps to help stop people falling off the bed- which might also help with some of the movements.

Yes as I said Im on primidone

Nahh I don't notify them tbh sometimes (haven't done this in ages) but I would take a diazepam, before the dentist or a job interview and I notice it calms me right down, but sometimes I would just avoid interviews altogether ! Also, I am stressed at the minute trying to sort this with my doctors etc and I am on universal credit and I am a single mum and universal credit ring me every 2 weeks and bring me into the job centre to try and get a job! And even though I would like a job for extra cash etc it's putting way more pressure on me, does anyone know if there's anything I could do for just at the minute until I get this sorted maybe with therapy and appointments that I could kindly get universal credit to kindly leave me alone at this moment in time 🤣

Oh sorry @soupfiend must of missed the promidione message. Did you say you find it helps? What dosage are you on,
Sorry for all the questions everyone but I have never ever spoke to anyone about it before!

I'm also relieved to come across this thread. I've been shakey all my life when I feel I'm being watched but now in my 40s the head shake has started. The first time was in a very stressful situation at work and now it happens in nearly all stressful situations, I hate it and it's causing me to worry more about it happening. I get it on the left side of my neck / shoulder area and have to clamp my hand on my neck to try and contain it so I can speak clearly and get through the situation. I find it hugely embarrassing and it is beginning to affect my life.

I already suffered from anxiety and panic attacks so this is an extra I didn't need.
My mother has a tremor that is believed to be caused by medication, started in her 50s and now she is in her 70s it is severe but I'm not on meds and already have a shake in my hands when using them, legs when sitting, internally sometimes like twitches.

I've just had bloods done for other health issues and I'm really hoping I'm just down in some essential vitamins or minerals. Parkinsons is in my extended family and this is my fear.
Thank you for starting this thread.

This is my fear to Parkinson's also runs in my family. This is going to sound stupid but I am only 29 can you get Parkinson's at this age?

This is my thing I notice a lot of people on this thread are noticing it more and they are 40s, I am only 29 and it has effected me bad already I dare say what it's going to be like when I'm 40/50 🙈🥲 I definitly want to start taking primidone to see it it helps but I am also so scared of starting medication, I think my body is so sensitive to medication, anytime I take anti depressants I get so sick and there's even some meds I come out in rashes I think I'm very sensitive to meds so I usually hate taking them but I think I would try but knowing my luck if I do start a med for it I'll Probly be sick! lol, and also I am the exact same it's my left side of my neck to and I also have to put my Hand there to to stop it. You are not alone because I'm the exact same ! I would not be able to stand up and ever do a presentation I would look like I'm being electrocuted 😂

I always describe myself as sensitive to medication, I can't drink anything with caffeine as I'm wired and can't sleep for hours. I get migraines and most of the stronger pills have caffeine which means I'm awake all night with the pain. I get hives from loads of stuff and suffer from IBS so food sensitive as well.
I've had the shaking (not head) long before 40s but blamed social anxiety for it and loved to drink to feel comfortable and enjoy myself. Alcohol doesn't agree with me now, become very flushed and very sick and dizzy the next day.

I've used a beta blocker Inderol for presentations in college and got through them but felt a bit thick tongued and tipsy. I'm a teacher so as my shake gets worse I worry about writing on the board and my handwriting is deteriorating.

My uncle had early onset Parkinsons which I think is 50s, I think the small tests your doctor did rule them out at a younger age otherwise they would surely have referred you.
I agree that the hands shaking are better than the head and easier to explain as a tremor. I hope the medication works for you if you try it, keep us updated if you find anything that helps. My doctor is checking bloods and thyroid so I'm hopeful that any deficiency being resolved could lessen it.
It's a relief to speak to someone who has actually experienced this. I'm like a bobble head when it happens, I'd love to be able to laugh it off.

OP I said I would ask DH what dose glutathione he takes and it is 1.5 grams per day. It is like vitamin C in that with higher doses like this you need to build up slowly from lower dose to higher till you reach bowel tolerance— that means when the dose gives you diarrhoea you go down to a bit lower one and stay on that.

Thank you where can I buy this? Do I order it. Did it give him the shits for a wile? I have ibs. Should be ok startin off with low dose