Tremors

[Guest guest]

Help everybody/anybody! My trembling hands have gotten very bad. This started before LDN and has gotten worse. I'm not saying LDN hasn't helped me, it has! Dr put me on 50mg Primidone @ bedtime (non-narcotic), but it knocked me on my butt! I'll call him Tues & see what to do. It helped my hands those 2 days, I just couldn't pull myself up. EXTREME fatigue! HELP!

Marcie

[Guest guest]

Kathy,

Thanks!! It's worth a try!!

Marcie

[Guest guest]

Marcie, I know you don't know me but take a leap of faith and get NADH by enada. I had that symptom on and off for 5 years and I take that on and off again. It has been used for tremors inParkinsons patients and is a form of niacin. It supplies ATP to the cell membrane so it is a cellular energizer. It is so good for ms in general. Go to Swanson.com

Kathy p.s. stop taking the medicine and don't bother calling the doctor. He probably doesn't know what NADH is or what the medicinal benefits are. It isn't his fault that he doesn't know. He has been programmed to prescribe meds that weaken you even further. God Bless you and please trust me on this one. It isn't a sure thing , but then again, nothing is. Kathy

Re: [low dose naltrexone] TREMORS

Help everybody/anybody! My trembling hands have gotten very bad. This started before LDN and has gotten worse. I'm not saying LDN hasn't helped me, it has! Dr put me on 50mg Primidone @ bedtime (non-narcotic), but it knocked me on my butt! I'll call him Tues & see what to do. It helped my hands those 2 days, I just couldn't pull myself up. EXTREME fatigue! HELP! Marcie

[Guest guest]

> Help everybody/anybody! My trembling hands have gotten very bad. This

> started before LDN and has gotten worse. I'm not saying LDN hasn't helped me,

it

> has! Dr put me on 50mg Primidone @ bedtime (non-narcotic), but it knocked me

> on my butt! I'll call him Tues & see what to do. It helped my hands those 2

> days, I just couldn't pull myself up. EXTREME fatigue! HELP!

>

> Marcie

=======

Marcie have you possibly developed an infection? Has your mom aggitated you of

late?

Also, I've been wondering if you've ever had a Western Blot test for Lyme?

Could you possibly have Lyme along with MS? If you've never had a Western Blot,

insist on one. Don't settle for just the ELISA test as it gives false negative

readings too often. You maybe fighting two diseases, rule out Lyme by a Western

Blot test.

[Guest guest]

In a message dated 5/29/2005 10:43:33 PM Central Daylight Time, TwisterAlley2@... writes:

Marcie have you possibly developed an infection? Has your mom aggitated you of late?

Also, I've been wondering if you've ever had a Western Blot test for Lyme? Could you possibly have Lyme along with MS? If you've never had a Western Blot, insist on one. Don't settle for just the ELISA test as it gives false negative readings too often. You maybe fighting two diseases, rule out Lyme by a Western Blot test.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++

,

I stay a pretty good distance from my mom, so it's not that. If I've got an infection, I can't imagine what. Like I told the Neuro last Tuesday, "I'm the healthiest person I know. I just can't walk." I've had both Lymes tests. Both said negative. I brought up the false negative question to the docs, but you can imagine the line I got. If I was ever bitten by a tick, it had to be very long ago. I'm sure I was as a kid.

Three years ago, I was starting to have a difficult time holding a pen. It has just gotten very bad in the last 6 months. The Primidone did help that tremendously for the 2 days I took it, but I have to be able to pull myself up. I've been on LDN since Nov '03.

Marcie

[Guest guest]

In a message dated 5/30/2005 10:59:40 AM Central Daylight Time, TwisterAlley2@... writes:

I have a mild tremor in my hands that LDN won't touch and repetitive activity like writing makes it worse. Watch yourself closely for bladder infections, you can have a bladder infection and not know it in the early stages. I take 4 CranActin cranberry capsules per day to keep bladder infections away. Haven't had a bladder infection in over 12 years since I started the cranberry capsules.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

I use Cranberry or Raspberry Emergen -C, and I haven't had a bladder infection in 6 years. Cranberry without sugar is great for that.

Marcie

[Guest guest]

> In a message dated 5/29/2005 10:43:33 PM Central Daylight Time,

> TwisterAlley2@w... writes:

>

>

> > Marcie have you possibly developed an infection? Has your mom aggitated

> > you of late?

> > Also, I've been wondering if you've ever had a Western Blot test for Lyme?

> > Could you possibly have Lyme along with MS? If you've never had a Western

> > Blot, insist on one. Don't settle for just the ELISA test as it gives false

> > negative readings too often. You maybe fighting two diseases, rule out Lyme

by

> > a Western Blot test.

> >

> >

>

> +++++++++++++++++++++++++++++++++++++++++++++++++++++++++

>

> ,

>

> I stay a pretty good distance from my mom, so it's not that. If I've got an

> infection, I can't imagine what. Like I told the Neuro last Tuesday, " I'm the

> healthiest person I know. I just can't walk. " I've had both Lymes tests.

> Both said negative. I brought up the false negative question to the docs, but

> you can imagine the line I got. If I was ever bitten by a tick, it had to be

> very long ago. I'm sure I was as a kid.

>

> Three years ago, I was starting to have a difficult time holding a pen. It

> has just gotten very bad in the last 6 months. The Primidone did help that

> tremendously for the 2 days I took it, but I have to be able to pull myself

up.

> I've been on LDN since Nov '03.

>

> Marcie

==========

I have a mild tremor in my hands that LDN won't touch and repetitive activity

like writing makes it worse. Watch yourself closely for bladder infections, you

can have a bladder infection and not know it in the early stages. I take 4

CranActin cranberry capsules per day to keep bladder infections away. Haven't

had a bladder infection in over 12 years since I started the cranberry capsules.

Glad you have ruled out Lyme.

LDN may not help your tremor. I take 4.5mg LDN and it does not help my mild

hand tremors.

[Guest guest]

For what it's worth, fatigue causes tremors for me. If I do too much, I shake so badly I can't reach a glass of water properly. I know how much I can do, and then I make myself rest. Zanaflex and Neurontin help.

=^= spacecadet =^=

-----Original Message-----From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of BrenSent: Sunday, May 29, 2005 11:43 PMlow dose naltrexone Subject: [low dose naltrexone] Re: TREMORS> Help everybody/anybody! My trembling hands have gotten very bad. This > started before LDN and has gotten worse. I'm not saying LDN hasn't helped me, it > has! Dr put me on 50mg Primidone @ bedtime (non-narcotic), but it knocked me > on my butt! I'll call him Tues & see what to do. It helped my hands those 2 > days, I just couldn't pull myself up. EXTREME fatigue! HELP!> > Marcie=======Marcie have you possibly developed an infection? Has your mom aggitated you of late?Also, I've been wondering if you've ever had a Western Blot test for Lyme? Could you possibly have Lyme along with MS? If you've never had a Western Blot, insist on one. Don't settle for just the ELISA test as it gives false negative readings too often. You maybe fighting two diseases, rule out Lyme by a Western Blot test.

[Guest guest]

Hi Joana:

I have tremors, and I have had them my whole life. I used to get teased about my

tremors when I was in school.

No one was able to tell me what was wrong with me until I was 51 years old. That

is when I had DNA testing done to confirm my neurologist's suspicion. CMT sure

did answer many life-long symptoms, no matter how mild they may have been in my

early years.

I take 50mg of Amitriptilyne each night for my tremors. This may have helped a

little some time ago, but my tremors are getting worse. I am working on a few

small projects around my house and tremors are causing me some frustrations.

Trying to put a screw in takes me so long just to get the screwdriver blade on

the screw head, and then keep it there. I must use two hands, and even at that

it is very hard to do.

As the disco song goes..Shake shake shake - shake shake shake - shake your

bootie.

I am not familiar with Clonazepam but I think I am ready for a new

medication, or increase my Amitriptilyne to 75mg. My neurologist does not

recommend any more than 75mg. That is the tops for him.

I hope this helps.

I am a Canadian, and I think I will always live in Canada. I did spend 10 days

at Iguazu Falls (Foz do Iguazu), Brazil in November of 1996. I was attending a

Latin America telecom convention. It was 42 degrees Celsius for the 10 days I

was in Brazil. That's about 108 degrees Fahrenheit. This was very warm

considering it had just begun to snow in Toronto when I left the airport for

Brazil.

Regards,

[Guest guest]

Maybe Gretchen can address this, but my understanding is that tremors and

CMT are not related. I know that some people with CMT have tremors, but they

are usually of an idiopathic or familial nature. I control my tremor with

one long acting capsule of Innopran (80 mg) daily. K.

[Guest guest]

Hi ,

Many Thanks for your email. I must to say that a long time ago an dermatologist

here in London prescribe me Amitriptilyne because I was losing a lot of hair. He

thought it was to do with my nerves, depression, etc. It was am awful experience

for me. I felt that I was in an another planet. I didn't know at that time much

about anti -depressant.

I am very careful with drugs now,Clonazepam in fact it is an anti-

epileptic drug. I do not have epilepsy, but Clonazepam suppose to help you to

calm down, that is what I know, but it is very addictive.

The reason why I do take that in a very small amount (0.5mg) is

because I got tinnitus (ringing in the ears), very irritating

condition.

Anyway, nice to hear from you and I can imagine how difficult it was

for you to be in Brazil in such hot weather...hehehehe..

I love the hot weather, but only when I am close to the water, lake, sea,

swimming pool, otherwise I can not stand too long. I always go to Brasil in

summer. I love it because I can really enjoy the sunshine and the beach..Hummm.

Yes, there you can skake, shake , shake... of hapiness! I do not have much

tremors now, just sometimes and don't bother anymore! Let's shake!

Feel free to email me when you want to.

Take Care

Joana

[Guest guest]

DEAR CINDY,

I was looking at this drug INNOPRAN...it is Propranolol, a beta blocker. I did

take that a very long time ago and then stop because of ths side effects. Maybe

you would like to see this info...in any case, sometimes what is bad for one

person, can be good for another!

Joana

Innopran XL

Active Ingredients: Propranolol ER

Representative Names: Betachron ER, Inderal LA, Innopran XL

Available Product Images:

What are propranolol tablets or extended-release capsules?

What should my health care professional know before I take

propranolol?

How should I take this medicine?

What if I miss a dose?

What drug(s) may interact with propranolol?

What side effects may I notice from taking propranolol?

What should I watch for while taking propranolol?

Where can I keep my medicine?

What are propranolol tablets or extended-release capsules? (Back to

top)

PROPRANOLOL (Inderal®) belongs to a group of medicines called beta-

blockers. Beta-blockers reduce the workload on the heart and help it

to beat more regularly. Propranolol controls, but does not cure,

high blood pressure (hypertension). High blood pressure may not make

you feel sick, but it can lead to serious heart problems.

Propranolol has a number of other uses; for some of these the

sustained-release capsules are not suitable. Propranolol steadies

irregular heart rhythms (arrhythmias) and relieves chest pain

(angina), and it may be helpful after a heart attack. Propranolol

can help prevent migraine headaches; relieve serious tremors

(uncontrollable shaking); and help certain problems related to the

thyroid gland and adrenal gland. Generic propranolol tablets and

extended-release capsules are available.

What should my health care professional know before I take

propranolol? (Back to top)

They need to know if you have any of these conditions:

•asthma, bronchitis or bronchospasm

•circulation problems, or blood vessel disease (such as Raynaud's

disease)

•depression

•diabetes

•emphysema, or other lung disease

•history of heart attack or heart disease, vasospastic angina

•liver disease

•low blood pressure

•muscle weakness or disease

•pheochromocytoma

•psoriasis

•thyroid disease

•an unusual or allergic reaction to propranolol, other beta-

blockers, medicines, foods, dyes, or preservatives

•pregnant or trying to get pregnant

•breast-feeding

How should I take this medicine? (Back to top)

Take propranolol tablets or extended-release capsules by mouth.

Follow the directions on the prescription label. Swallow the tablets

or capsules with a drink of water; do not crush or chew the

capsules. Take your doses at regular intervals. Do not take your

medicine more often than directed. Do not stop taking except on your

prescriber's advice.

What if I miss a dose? (Back to top)

If you miss a dose, take it as soon as you can. If it is almost time

for your next dose (less than 4 hours for regular tablets, or less

than 8 hours for extended-release capsules), take only that dose. Do

not take double or extra doses.

What drug(s) may interact with propranolol? (Back to top)

•antiinflammatory drugs (NSAIDs, such as ibuprofen)

•atropine

•barbiturate medicines for inducing sleep or treating seizures

(convulsions)

•cimetidine

•cocaine

•ergotamine

•hawthorn

•levodopa

•medicines for colds and breathing difficulties

•medicines for diabetes

•medicines for high blood pressure

•medicines for mental depression

•medicines for mental problems and psychotic disturbances

•medicines to control heart rhythm

•rifampin

•theophylline

•tubocurarine

•water pills

Tell your prescriber or health care professional about all other

medicines you are taking, including nonprescription medicines,

nutritional supplements, or herbal products. Also tell your

prescriber or health care professional if you are a frequent user of

drinks with caffeine or alcohol, if you smoke, or if you use illegal

drugs. These may affect the way your medicine works. Check with your

health care professional before stopping or starting any of your

medicines.

What side effects may I notice from taking propranolol? (Back to

top)

Side effects that you should report to your prescriber or health

care professional as soon as possible:

•changes in blood sugar

•cold hands or feet

•difficulty breathing, wheezing

•difficulty sleeping, nightmares

•dizziness or fainting spells

•hallucinations (seeing and hearing things that are not really there)

•muscle cramps or weakness

•skin rash, itching, dry peeling skin

•slow heart rate (less than 50 beats per minute)

•swelling of the legs and ankles

•vomiting

Side effects that usually do not require medical attention (report

to your prescriber or health care professional if they continue or

are bothersome):

•dark coloration of skin

•diarrhea

•dry sore eyes

•hair loss

•nausea

•sexual difficulties (impotence or decreased sexual urges)

•weakness or tiredness

What should I watch for while taking propranolol? (Back to top)

Check your heart rate and blood pressure regularly while you are

taking propranolol. Ask your prescriber or health care professional

what your heart rate and blood pressure should be, and when you

should contact him or her.

Do not stop taking this medicine suddenly. This could lead to

serious heart-related effects.

You may get drowsy or dizzy. Do not drive, use machinery, or do

anything that requires mental alertness until you know how

propranolol affects you. To reduce the risk of dizzy or fainting

spells, do not sit or stand up quickly. Alcohol can make you more

drowsy, and increase flushing and rapid heartbeats. Therefore, it is

best to avoid alcoholic drinks.

Propranolol can affect blood sugar levels. If you have diabetes,

check with your prescriber or health care professional before you

change your diet or the dose of your diabetic medicine.

If you are going to have surgery, tell your prescriber or health

care professional that you are taking propranolol.

Take Care

Joana

[Guest guest]

GRETCHEN,

Very Interesting... I, too have tremors ...and remember when I was much younger

in Brazil I have lost an opportunity to work in a different department in a Bank

because of my tremors. I was going to work with statistics and designing

graphics etc and I could not do at that time.

There are days now that I do not have much , but some days is very

bad ...irritating really!

I am not doing my paintings right now but remember few times I did

take a beta blocker just to see the tremors stop at once to continue

work on my art.

Stress definitely is bad for the tremors.

Take Care

Jo

[Guest guest]

I've had tremors in my hands since I was a teenager. I'm now 47. I don't

have a " resting " tremor, I just notice it when I pick up a cup of tea or

something. I did not seek treatment until about 10 years ago, because I

didn't know there was a treatment. Exercising also does cause my tremor to

act up. I take 80 mg. of long acting Innopran (Propranalol) every day. I

also have 20 mg tablets of Propranalol (not the long acting kind) to take

occasionally right before I know I'm going to be out to dinner, taking

Communion at church, or maybe in a stressful situation. This has worked

quite well for me for several years. However, I think the best " treatment "

is to avoid stressful situations if possible, avoid caffeine, and relax as

much as you can. K.

[Guest guest]

Did anyone see Good Morning America this morning? They did a piece on

essential tremor, stating that between 5 and 10 million Americans suffer

from the disorder. They mostly focused on a rather drastic " cure " which is

deep brain stimulation surgery. I think I'd have to be a lot worse than I

am to consider something like that. Nothing was really said about different

courses of treatment/medications that may be helpful.

[Guest guest]

How many people have tremors from Mold exposure? Are they in head, hand or body?

Wax and wane?

temporary or permanent?

Thanks,

Katrina

[Guest guest]

I had something similar to that while I was in my moldy work environment.

Several Penicillium toxins cans cause this. Do a search for Penicillium and

tremors.

Kathyw

kattemayo <kattemayo@...> wrote:

How many people have tremors from Mold exposure? Are they in head, hand or

body? Wax and wane?

temporary or permanent?

Thanks,

Katrina

FAIR USE NOTICE:

[Guest guest]

Thanks Carmella and Gretchen

I assume that is the direction we are headed (DNA testing). I am just happy I

found this neuro, he is the third one I have seen in addition to my PCP.

Although I was hoping for an dx and an easy fix, deep down I have known that is

not likely.

Regardless of the dx, I need some help managing these symptoms and

dealing with how dramtically my life has changed. Nine months ago I

was camping, hiking, running, doing yoga, going to school,

volunteering etc. Now, just typing this is extremely hard because of the tremors

and if I do anything physical, I hurt and can barely move for days. I feel like

I am mourning what my life use to be and don't know how to move forward to what

it could be.

I am $15,000 in debt in student loans and have no idea if I will ever be able to

teach. What kind of job can I get when I can't sit or stand for more than 20

min.

Sitting makes my feet go to sleep, standing is terribly painful. My

arms arent much better. I keep researching and contemplating, return

to school or not, switch majors, get a small job, start a business or something

I could do when I feel well, or sit around and rot (which is what I feel like I

am doing now).

I wish I knew if I was going to have improvements in my physical abilities, then

I would know if I could continue on the same path I was before. I know nobody

has these answers, I just don't have anyone else that understands that I feel

like I am at a fork in the road and completly lost.

My husband just thinks this is going to go away I think. I used to think he was

right, but now anyway, thanks for letting me vent.

Jen

[Guest guest]

Jen,

Ask your doc about medications for tremors. This will help.

If you don't want the medication route, try Isoleucine for the tremors.

Isoleucine is an essential branched-chain amino acid (BCAA). A

building block of protein (as are all amino acids), isoleucine plays a

vital role in protein synthesis, muscle building, and preventing

muscle loss.

I realize this is a very stressful time for you, and yes grief is a

process some with CMT go through. Perhaps this info will help

http://www.lindacrabtree.com/cmtnews/Grieving/grievingsubtitles.htm

Be good to yourself, rest, eat healthy, and sleep when you need to

right now. Perhaps once you are diagnosed, other medications and/or

supplements may help and you can get on with full enjoyment of life

after acceptance.

Try not to " think " or " worry " in advance - this seems to just set up

one for more " fear " . Focus on the " present moment " , and gratitude for

even the smallest things. Take care of yourself in all dimensions now. Later,

everything else will fall into place. At some point, go to our Files and take a

look at our Career List. This may give you some ideas.

~ Gretchen

[Guest guest]

Hi Jen,

I wish I could say or suggest something more to help you. My son and sister

both have CMT but I am fortunate that I show no signs of having it.

Hang in there and you will receive so much support and help with this group. If

she hasn't already, I'm sure Gretchen will have information and suggestions to

help you through this. I know my sister takes meds for her issues so there is

stuff out there to help. Again, I'm sure you will hear from people dealing with

the same issues you have and they will share what they take/do to manage.

Best of luck to you and keep us posted.

Take care.

Carmella

[Guest guest]

Hello Jen,

It's Teri, Carmella's sister. I need to go back through the

posts to get a better idea of what all you are dealing with besides the tremors.

I understand how frustrated you are about your life.

I had to give up a good job, limit my physical activities and obviously rest

more. I was always afraid that if I rested too much that people would think I

was just being lazy, I have gotten better with that. It is hard to be limited.

My main complaint is the weakness in my legs and the fatigue. I push myself on

a daily basis, although some days I just cannot. I end up being a lump.

I am on 800 mg of Neurotin 3 times a day and it really helps the symptoms as far

as the muscle twitching, burning sensations. I still get these but it is less

than before. I also get vibrations in my feet (now that's a strange sensation)

stabbing pains and other strange things.

I truly wish you the best. If I can help in any way, please let me know!

Try to laugh often, it really helps. I constantly keep having medical issues

and have learned to laugh it off and joke with my family about what will happen

next! They are thinking of starting a poll!!! Ha ha ha.

Take good care of yourself!

Teri

[Guest guest]

Gretchen,

I have a really hard time asking for anything, ever. I feel like a

muscle relaxer would help my legs tremendously. The EMG causes

everything to spasm. I have had a lot of trouble walking this week

because my legs are so cramped. It feels like all my muscles have

been " pulled " .

I am going to have to get up the nerve on Wed for my upper body EMG

to ask for something. I always feel like they think I just want

drugs. The last neuro really got me thinking this was in my head. He

said I was bipolar and it was somatic. He gave me a Lithium

replacment drug, I tried it really hoping it would help but never

noticed anything from it except for being even more tired.

I keep seeing everyone say essential tremor but I have an intention

tremor. Does anyone else have an intention tremor because maybe we are on the

wrong path?

I was doing fairly well until it started getting warm out, I am used

to being very active this time of year. My yards is calling to me.

My arms are bad today, typing is killing me. Thanks to everybody for

helping me get through a couple of hard days.

Jen

[Guest guest]

Jen,

Read over this. Explains different kinds of tremors.

http://www.postgradmed.com/issues/2000/07_00/cooper.htm also

Essential tremor

http://www.sciencedaily.com/encyclopedia/Essential_tremor/

Essential tremor 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. Read full article at www. Wikipedia.org

http://en.wikipedia.org/wiki/Essential_tremor

Also, do you realize Lithium is on the Toxic Medications list for

CMT?

It is absolutely necessary to be 'pro-active' with your doctors in explaining

symptoms and asking for relief - like asking for a muscle relaxant for your

legs. There is no point NOT to ask. No one should be miserable, and remember,

this is YOUR life, be assertive with the medical profession. The best

'partnership' is where the doc and patient can manage symptoms as a 'team',

each having the same goals - to help the patient's quality of life.

I know what you mean about being in the yard. I garden, and I can get lost out

there, loose total track of time - even overwork. So, I set a timer, for one

hour, on each 'project'. When that timer goes off, I stop everything, come back

inside and change to a different activity, or sit down to read for awhile. I

prioritize what I want to accomplish, and I also pace out my work evenly. For

really heavy work - like cutting branches/fruit tree pruning, etc., I get help.

I hope you can enjoy this Spring. It is just glorious here these days.

~ Gretchen

[Guest guest]

Gretchen,

Thanks for the info, the first neuro and my PCP said it was an

intention tremor, the neuro I saw at the university of Chicago said

he thought all of my problems were just an essential tremor. I only

saw him once since he was just going down the same path as the first

neuro who just ended up thinking I am crazy. I stopped taking the

Lithium replacement and seeing him too. This new neuro took

everything much more seriously and did notice my EMG wasn't where it

should be, among other things. I didn't specifically ask what it

showed because I was overjoyed that someone was recognizing that

something was wrong and thought he might know what it is.

I have been trying to break up jobs into small project so I feel

productive, I just have to learn to say it is ok to feel like this.

thinking I wasted months of my life because of something in my head was really

getting to me.

My husband is constantly on me, saying, if it was the kids you

wouldn't stop until they had what they needed. I am going to ask for

some help with the symptoms Wed, that is the reason I went to this

guy, he is a pain managemt specialist.

I have also started laying down, not just sitting, a couple hours

before my family gets home and that seems to help me function better

with them.

Thanks again and again.

I am now going to help my husband paint some of the foundation of

the house.

Jen

[Guest guest]

I believe I have essential tremors and intention tremors. My main coping

strategy is simply to ask for help when I need it. I am a toddler teacher and I

often can't button small buttons, open lunch packaging, or put in a barette. I

ask for help. I don't know that there is much more that can be done.