This section of the website will be used to showcase personal stories of members of the National Tremor Foundation, that will inspire hope and help others with tremor find ways to overcome their difficulties. We are currently collating personal stories, and are looking to build a strong library of items. Please contact us with your personal stories.
I have had ET for a number of years now, and I have managed quite well with it so far. Recently, I have noticed that my tremors are getting worse when I am out in stressful situations - e.g. public presentations.
I live in Maidenhead, and I wanted to know if there is a local support group.
Thanks.
Hi Jane!
I was sorry to hear of your problems. Head tremor can be a neuological condition. I suggest that you contact your GP for medical advice.
Unfortunately, Ash there is not a support group in Maidenhead at the present time. The nearest group to you is based in either Essex or Middlesex. We will however try and put members who live in the same area in touch with each other.
Hello everyone!
I have just been diagnosed with OT. My mother and maternal Aunt also have this tremor disorder. Does anyone know of a hospital that is doing genetic research on this disorder? Which hospital in the US is doing any current research on this? I am 49 years old, pretty healthy, diabetes since a teenager (under control), No major illnesses. I have been having problems with OT for 1 year and received the dx about 6 months ago. Tried Primadone with too many side effects. Need a support group in the Nashville, TN area.
Please help.
Thanks,
Judy
Hi I am 44 female (N Yorkshire) and have been a bit 'stressed' this year as the result of organising a high profile event. Have recently been experiencing head tremors, am v conscious of these and this is now making me embarrassed when I communciate with people on a 1-1 basis, as well as paying in shops etc as I am scared my head is shaking. Saw GP last week with blood tests booked for this week and then visit to neurologist planned - am scared stiff now at how debilitating this could become. Has anyone any help ??
Hi Judy! Have you contacted the International Tremor Foundation www.essentialtremor.org in the USA at all? They should be able to point you in the right direction with regard a support group and hopefully tell you of any research studies which are being carried out in the states.
Hi Jane! If you would like to give me a call in the office I can discuss this further with you tel. 01708 386399. It always helps to talk about things particularly when you are under pressure.
One of our members has emailed in and has asked if anyone has shared the same experience as him. Our member writes:
I am a 72 year old man and was born with ET. When I get a sore throat my voice goes husky, but loses its tremor. Also, I have tried taking Primidone, but have had to give it up because of side affects, i.e. I kept falling asleep (possibly my age) I also suffer from tinnitus and when I was taking Primidone this disappeared. Has anyone else experienced these things?
Medication Side Effects:
I have tried Topamax with partial success but the insomnia was unbelievable - did not sleep for the 6 months. I tried it on a couple of occasions and on one of those, thought I was getting my life back and my confidence sky rocketed. Had to discontinue for side effects and needed to up the dose for benefits (from 50 mg).
I just wondered if anyone had suffered any kidney stones whilst taking Topamax - this was never discussed with me when prescirbed the medication and was never told to increase fluids.
I recently discovered that I have a 4cm kidney stone and mentioned this to my Neurologist on my last appointment and was told that this would be a contributory factor.
I have just been informed that my left kidney is not functioning and I have to have it removed with the stone. I am absolutely devastated. I am not saying that this is the case for everyone, but it is so important to increase your fluid intake whilst on this medication - would hate this to happen to anyone else. I am now terrified of even taking an asprin, never mind neuro meds. Back to square one !!!!!!!!!!!!
I am 55 yrs old and looking back I would say I have it since I was about 15. I always had difficulty taking notes at school as I could not write at speed and my hand would very quickly ache. Later it was a slight difficulty holding a glass of wine while standing at a party. And by the time I was 25/30, cutting my children's fingernails was always a challenge. But none of these things were severe enough for myself of my family to worry about.
As captain of a Badminton team, I always had difficulty controling my hand to fill out the result forms when the adrenalin was up having played a match .
Now, at 55, my tremor is worse. When brushing my teeth I have had to change hands as my jagged movements were becoming a danger to my teeth. I also have trouble with circular movements so now apply makeup and creams with my right hand (I'm left handed). Even stirring a pot, buttering toast, and particularly sewing on a button or manucuring my nails, is challenging but managable - except sewing maybe! Another difficulty is using a Mouse and accurately pointing the Cursor.
I recently attended a neurologist who prescribed a beta blocker. I have it now for about 2 weeks and still haven't taken it - worried about side affects.
I also have a condition called Hereditary Angio Edema Type 2, which is a C1 Deficiency. My consultant told me that she had another patient with ET who also has HAE. Does anyone else have this conbination?
I have undiagnosed Nueuological movement disorder, movements are better in the left leg now but my tremors are bad when I am out but have tremors of the voice most of the time. Tremors are in the left hand but I do not have much difficulty if I am using them. Is this considered Essential Tremor? Will appreciate
help.
Hi, I am a very fit and young looking 61 yr old. I gym 3 times a week and walk four miles at least once a week. I have never had any major illness and don't take any drugs. I have been under a lot of stress from neighbours for the past few years having had several court cases, all of which we have won. However, the stress has been awful and although I have tried to combat it by excercise and keeping fit I am wondering if this sudden head tremor (no no) I am experiencing is caused by stress. It is very noticable and I am becoming very aware of it. I haven't seen my gp yet but intend to soon. Is this a common ailment?