Not a new member, but would love for this support site to grow. Hugs to all who read this.

The number keeps going up but still no talking. Welcome! We would love to hear from you.

Hi , just joined group . I’m wondering if anyone on here has done the DBS ( deep brain surgery for ET . My neurologist is recommending it & it’s pretty much got me scared .

I have not had it. I would not classify mine as severe enough to warrant it. But I usually say to try and do the medications and diet way long before trying the DBS. But every person is different.

How long have you had your ET?

I also want to say Welcome! :)

KevinN , I’ve had it over 40 yrs . The primidone helps , but I have breakthroughs where it doesn’t . Last year & a half it’s gotten more disabling. What “ diet “ besides no caffeine are you suggesting?

Low sugar, less starches, no alcohol, less meat, low fat,....basically removing most of what I like. One thing I have been pushing and have yet to get tested is dopamine levels. But that is just a theory that I want to test.

ET can get severe. Good days and bad days. SimpsonOK gets affected by heat. Mine does not that much.

One doctor told me that all tremors that they can't pinpoint an exact reason gets called ET. So honestly I think there are multiple types of tremors all lumped together. Some genetic and some not. Some late onset and others life long. There needs to be more study.

Many of us just try to cope and take something that helps. SimpsonOK has some success with her combination of pills. Hers are severe tremors. She is amazing and my hat off to her and how she manages.

Welcome aboard gma. I was first diagnosed at 5 y/o and it has gotten much worse over the last decade. I have read some on the DBS and mostly looks very promising. A nurse friend watched a Parkinson patient get the brain surgery years ago, and was in awe of its success. A good neurologist will put you through the specific tests for ET; mine sent me to a motion disorder neuro when he saw some signs that might indicate Parkinsons, but she ruled that out.
If you have not joined the IETF, it's free, you might want to do so as they seem to track the research very well. along with many useful tips for day to day. Actually alcoholic drinks help with the ET, but one runs the risk of abusing it.
This is a bit disjointed, but more discussion another time. Hugs to you both.

Alcohol helps but usually the next day the tremor can be quite bad. But again, person by person basis.

Hugs to you too :)

Simpsonsok
Hi , my RX says NO Alcohol , I miss an occasional glass of wine ( in an adult sippy cup now ) . Have lost family members to accidental overdoses & am scared to have any alcohol.

GMA, I am in the same situation due to multiple meds for various physical problems. Toughest was no more grapefruit, which was followed by no fresh fruits or vegetables. For busy days out, my neuro has me add a 1/2 a 25 clonazepam, which does help. Calming and comforting hugs.

Kevin had a death in the family, but will be returning.

Hi KevinN,
Saw your post back in July about the "diet". So those things you listed are known factors that make the tremors worse? I read somewhere (now I can't find it) to stay away from fruit, was that you that said that? I am 49 and was diagnosed with ET when I was 46. but just in the last 6 months have noticed it is getting worse.

Hi Mary, I have had to omit fresh fruit and vegetables, but because of IBS-D. Some of what is good for ET is not good for IBS-D. There are easy to find lists for ET foods to help or hinder tremors all over the internet. Really important to have a toolbox of stress reducing activities. Hugs.

I just discovered this group and was so excited to find it. Through internet research, I have diagnosed myself, I know that is not always wise, with ET. I never understood why my hands shake even after giving up caffeine years ago. It is so frustrating when people say, “you are shaking” as if I didn’t know it. Sometimes it is hard to write. I know people have it worse then me, but it has been a concern of mine for decades and now my son has it. I think I got it from my Dad so it must be hereditary. Does anyone have any resourceful websites that I can learn more about ET?

Hi again Simple Living. Great website is the International Essential Tremor Foundation. Lots of free pamphlets available, plus info on the site and an e-newsletter. Switch from porcelain to heavy mug was a huge help, as was arm placement. Writing is something I time when to do. Neurologists can give you a definitive diagnosis and med plan. The testing is a series of physical movements that the neuro does on first visit. Welcome aboard this DS lifeboat my friend.