Essential Tremor Support Group

Essential Tremor (ET) is a neurological disorder characterized by shaking of hands (and sometimes other parts of the body including the head), evoked by intentional movements. The incidence is unknown, but is estimated to be as common as one person in 20, and it is the most common type of tremor and also the most commonly observed movement disorder.

355 Members
330 Posts
0 Online
Brain & Nervous System
/ Essential Tremor Support Group

New to group

dbwole338
dbwole338

Hi everyone, I am Denise, .i am 44 and have been living wit,h essential tremor disease for about twenty months...but in the last five moths it has sped up drastically due to my seizures.  I have had seizures for more than a year...apparently I.ve had some that affected the area of the brain where the tremor disease comes from.   At Christmas I was able to go to the store myself and buy a pair of boots.   No ,ore.  I cannot be left alone...My whole body tremors terrible....I have a nurse.s aide and a wonderful husband....I can barely feed myself, I use weighted utensils and always wear my weighted gloves, the tremors in my one leg are so bad that they act up my sciatica from an old back disability and I am forced to wear ice packs on my calf muscle..I get dystonia in my feet terrible.  Typing this is very hard.i can no longer smile because my face tremors so bad.  I failed the swallow test because my toungue tremors constantly and the water and even pudding goes dangerously close to going down into my lungs..I choke at every meal.   My quality of life has dropped so dramatically in five months, and, I don’t know how to handle it...there is no cure and it.s only going to get worse.   I started stuttering abruptly about four moths ago, I am in speach therapy, it is very frustrating...people perceive you as being slow because you stutter.   I actually had a dear friend say to me...are you now mentally and physically handicapped...and she was serious,,,,I was stunned and didn’t know how to handle the situation, thank heavens for my husband who stepped in and set her straight.


it is also very hard on my family, I have a 19 yr old son who worries. Instantly about and he has me call his throughout the day to make sure my pills went down alright, etc, and it is hard on my father to see his little girl having seizures and systems as bad as Parkinson disease at just 44.  My aunt he’s this disease...but we figured it out..she was 68 when she was finally stating to show signs and it had a normal slow progression.



ok, that.s my story...if I can make one friend out there, I will cherish you forever...


.Denise 

SimpsonsOK
SimpsonsOK
Denise, if I were you I would find a different neurologist, and if you can locate a motion disorder neuro, that would be even better. Sometimes ET does not travel alone. If you are not on primidone, you need to be. It is an anti-epileptic med. It has really improved my tremor propensity, and I have not had a major seizure. There are also other back up meds. Hugs.
dbwole338
dbwole338
I had a serious BAD reaction to primidone...it made me suicidal...and I love my dr.. and I cannot travel any further.
SimpsonsOK
SimpsonsOK
Guess I was lucky that it worked for me with no side effects. Wish more folks would return/join the group. I find sharing helps.
dbwole338
dbwole338
You are very lucky, some day I will tell u the full story...it was bad and took my life over for twelve weeks. I really did want to end my life that day because I couldn’t take the side effects anymore.....once they told me I never had to take that drug again a 200lb weight was lifted and, I was still fragile but was not suicidal...then they read the side effects and it said in the third line...causes suicidal tendencies.
SimpsonsOK
SimpsonsOK
Like I said, I was fortunate that it has worked for me. I had un-joined this site because of the lack of activity. I think you are seeing why. Glad we are friends via another site. Hugs.
dbwole338
dbwole338
Yes, me too....glad we have met. It is a shame there is a lack of activity here....but I.ve joined an ET support group on FB and that has helped a great deal. This ET is a bear. Hugs back to you
Exodus
Exodus
Hi there, dbwole338 have you considered DBS or Focused Ultrasound? I have ET myself which started at a young age and has dramatically gotten worse in the past 3 years. I'm currently working with a specialist in ET who highly recommends DBS for my situation. I've spent weeks pouring through medical journals in various neuroscience areas and have decided to wait for certain technologies to become commercially available provided the wait isn't too long.

Anyhow, I'm not sure if either solution is viable for you due to your seizures, however, it's worth inquiring about. I really feel for your situation and can relate to the devastation this has caused you.

If I may ask, are you working with a neurologist that specializes in movement disorders?
dbwole338
dbwole338
My neuro does not specialize in movement disorder and on thurs she suggested I go to Pugh to see one...but I am also disabled from a spine disease and I cannot travel..Pugh is three hrs away at least...I said no and begged her to keep me under her care,,,she said she would do the job...she would do the research and do video chats with drs in Pgh about my case. She is wonderful..I see her every three wks. I.m not sure I
M ready for DBS....I’m scared...but you r probabyright it would be a life changer for me... Abe in a few months I,ll have had enuf of this and go for it!
SimpsonsOK
SimpsonsOK
Denise, great that your neuro will consult with the movement neuro.

Exodus, I was first diagnosed at 5y/o, but it really got bad the last five. I chalked it up to being a senior, and having other physical problems also showing up.
Exodus
Exodus
Denise, that is a dedicated Dr. and am happy to hear that. I think you have a complex case but if appropriate DBS with its current technologies would vastly improve your life. Boston Scientific and Abbott have released good systems. With the Abbott system's iOS software, a Dr. in Pugh may be able to do the adjusting of the neuromodulation.

(http://www.bostonscientific.com/en-EU/products/deep-brain-stimulation-systems/vercise-gevia-with-neural-navigator.html)

(https://www.sjm.com/en/professionals/featured-products/neuromodulation/deep-brain-stimulation/implantable-pulse-generators/infinity-deep-brain-stimulation-system?clset=af584191-45c9-4201-8740-5409f4cf8bdd%3ab20716c1-c2a6-4e4c-844b-d0dd6899eb3a)

SimpsonsOK, these are two systems you may want to look into as well. I personally prefer DBS over Focused Ultrasound for reasons I can explain if needed. Of course your Dr. will recommend a treatment that's right for your situation.

The current pharmacological treatments are insufficient and for many patients with ET have a very minimal effect if any. The reason I am choosing to wait for DBS technologies to improve is my age. I believe we're on the cusp of seeing this 15 year old technology move into a more modern advancement era with the development of closed looped systems, thinner smaller leads, and method of lead insertion, I've also been given the opportunity to try a very unusual medication that if even moderately successful will afford me the 5 - 8 year wait.

Please keep us updated on your condition and treatment!
dbwole338
dbwole338
Wow, this is a lot to think about..a five to eight yr wait? Right now I have to take it day by off-road I.ll go nuts..like..I.m going swimming Tom and I.m sooo excitiped to get these legs exercised and stopped cramping. If I can’t travel three hrs to pgh...how could I ever go ten to Boston, my niece lives there and my sister drives ten to see her all the time. It.s not like it.s a one time deal...there.s all the follow ups, etc...I think I.m staying local and I
Ll just make do the way I can..somehow
SimpsonsOK
SimpsonsOK
Is it only set up in Boston, or are other hospitals/doctors also able to set it up? I know Yale in Conn. specializes in motion disorders, and I have some family that I could visit there, but would need to return to Dallas where I live. Once set up, can it be operated in other states? At 71 I don't see a 5-8 year wait as a possibility. I'm with Denise here; this is a lot to wrap my head around. Hugs to both of you, Sandra
Exodus
Exodus
First let me apologize, the Boston Scientific model is only available in Europe currently. Second, the whole DBS system is sold commercially to many hospitals around the country that preform DBS surgeries. So if the Boston model had been available in the US you would not have to travel specifically to Boston, MA but rather to the closest hospital that does perform DBS surgeries.

Currently there are two manufactures of DBS systems for ET in the US. Abbott and Medtronic. I didn't mention Medtronic earlier because they're still awaiting approval from the FDA for an upgraded component of their DBS system.

Denise, yeah there would be follow up visits to adjust the unit. With that said perhaps your neurologist could figure out a way using video conferencing to make the adjustments. I just hope that you explore the option of DBS. Maybe you wouldn't have to travel to Pugh all that often. ET is a really awful disease and it's sad to hear about someone suffering so much.

Sandra, reading above it looks like you said Primidone is working well for you. I guess I missed that post. If that's the case then no need to consider DBS at this time. I'm glad that it has worked for you!

Wish you both the best!
(oh, if you're curious anyhow I've linked the patient information website for each manufacturer.)

http://www.medtronic.com/us-en/patients/treatments-therapies/deep-brain-stimulation-essential-tremor.html

https://www.sjm.com/en/patients/movement-disorders/dbs-therapy-options/essential-tremor
dbwole338
dbwole338
How do you know so much about DBS? Do u work for them...have u had it done, or know someone...if it.s if ve to seven yrs away...what do we do till then......I.m just..not sure I can handle the idea of brain sUrgery..you know? I.ll think on it, and definately read the link you provided..thank u for caring so muc..it means a lot to think that I actually matter...because..you see...stuck in this little existence, it feels like I don’t matter anymore...so thank you
SimpsonsOK
SimpsonsOK
When I say the primidone works for me, I am not saying that it leaves me tremor free. I still have to pick the right times to do things like writing checks, and will need my arm secured to do so. Things like signing a credit card in some stores, I am amazed they accept the wobbly result. I may not be able to heat things up on the microwave (above the stove) at times due to the reaching tremor. I have found that 1/2 a clonazepam to back up the primidone is needed on some days. I try to get all out of the house things done in the morning, as the heat in Dallas can set it off. I no longer am ending up with drinking glasses flying, or breaking, and having to mop up the spill. We each matter. You matter to Exodus and I for sure. Healing hugs to all.