Frustrated!! [Archive] - Women's Cycling Discussion Forums

Aggie_Ama

10-09-2008, 09:10 AM

A few years ago I lost 40 lbs and along the way developed a tremor. They technically call it a Benign Essential Tremor but benign it is not. At the height of it I couldn't write or eat anything with sauce or soup.

First the doctor did a battery of blood tests, I seriously had multiple blood panels, EEG, wore a heart monitor and then sent me to a neurologist for evaluation. The first neurologist was terrible and but me on an equally terrible medicine. At one point I was taking 250 mg 3x a day of Neurontin. I was dispressed, irritable and stupid (it made me feel foggy).

I finally gave the doctor the bird (not literally) and went to the Parkinson's clinic at Baylor College of Medicine. They are also a premier movement disorder clinic. There I got put on Primidone and went on with my life feeling less depressed and a little sharper. I moved here and found an amazing neurologist and gained 30 lbs where I was back at my pre-weight loss level. The neurologist became convinced last summer my tremor had done the rare thing of going into remission and took me off the meds.

Okay, now here we are. In the last month I have been back on Weight Watchers and lost about 10 lbs to date. The tremor is back. It is faint but it is here, the wobbly handwriting is the first sign and I know it will get worse if it follows last time's path. I am so frustrated. Every doctor says there is no weight correlation, my blood work looks normal everytime but something is up. I am going to my GP next week for a blood panel but I am so frustrated. I don't want to go back on meds but the alternative of throwing dressing, salsa, food everywhere and having handwriting I cannot read isn't an option for me either. I know we have worse health conditions on here, heck my husband has a worse one but dang it. Can I not be thin and shake free?

Sorry, reservation for a pity party of one.

maillotpois

10-09-2008, 09:14 AM

How incredibly frustrating that must be!! Congrats on the 10 lbs - but GRR!!! :mad:

Can you go back to that good neurologist?

SadieKate

10-09-2008, 09:43 AM

How frustrating! Have they done any MRIs or scans for anything that might not show up on blood panels?

Maybe 10 lbs in one month is a bit fast for your metabolism. If I tried that I'd be shaking all the time from hypoglycemia.

redrhodie

10-09-2008, 10:00 AM

Oh, I'm so sorry! That is frustrating! Are you on the same diet you were on when you originally lost the 40lbs?

Aggie_Ama

10-09-2008, 10:53 AM

Maillotpois- I am still a patient of the neurologist here, so I can see him if necessary. Probably can get in pretty quick too as opposed to a new patient. He is still on my insurance and I would pay out of pocket after my experience with Dr. Neurontin pusher.

Sadie- Well it has been less than 2 lbs per week, I guess I am at closer to 6-7 weeks. This is via Weight Watchers so I am still eating fruits, veggies and even candy but less calories and I wonder if there is a correlation. I am still thinking I might have cut out too much of something unbeknownst to me and my body is revoluting? That is why I wanted to start at the GP with a blood panel. But no MRIs or anything past the EEG, heart monitor which were actually more for some vision issues that arose at same time.

Red- Yup, Weight Watchers both time. Basically I have really cut down on the junk food but otherwise my diet is business as usual. I am just eating less total and less fast food.

OakLeaf

10-09-2008, 05:02 PM

Miranda

10-09-2008, 05:59 PM

Aggie_Ama... I'm so sorry hun, that just plain ole sux:(.

I have several things that have weirdly fell apart with my 30-something body in the last 10yrs. One being an autoimmune/neurological disorder as well. It can be so frustrating indeed. The neuro docs are smart fellows, but none of them really knows what causes most of this junk, or what the miracle cure is.

For ME, just my lil humble op fwiw, I know that my symptoms increase, or come out of remission, with any stress to my body. Emotional/mental stress overduely, lack of sleep, getting my immune sys activated even with the common cold, etc.

With that being said, I know this is not what you want to hear, but losing weight is sorta a stress on your body. It kinda goes into a fast I think is one way to put it... aka a stress. Now, WW is a very healthy program. I've been on it before. I have also lost a significant amount of weight before at one time. I think I remember my symptoms flaring too. But, they cycled out. I dont' have the tremor issue... but other things.

Losing weight is a very good thing overall for your health. For some of my other issues, less weight is best. So, it's the balance of the evils. I have no real clue if this could be a possilbe theory. I hope your family doc can help with the blood work. The chemical imbalance might be a starting point too. ((((hugs))) Miranda

Miranda

10-09-2008, 06:07 PM

(((((Amanda)))))

My dad's had a tremor for years, so I can definitely empathize with how tough that is. Sending good thoughts and prayers that yours stays away.

ETA: I am not a dr. etc. etc... and I'm only superficially familiar with the various diet plans... but IIRC Weight Watchers is low fat? Good fats are definitely implicated in neurological health. (As well as being important for weight loss... you may find that you actually lose more weight on a diet that's rich in good fats.) Maybe try an Omega-3 supplement like Udo's Choice or freshly ground flax seeds, or just try to get more good fats in your diet - cut out something else if you want to keep the same total calories?

OakLeaf.... that's interesting about the good fats. I never knew that about the diet and neuro health... but I live on those. DH was suppose to convert to the South Beach Diet way for his cholesterol, but *sigh* is non-compliant. I, however, follow some of the principles and am an almond eating monster, good fat freak:o. I would NEVER buy anything "fat free" ever again after reading that book. Fat free was the big fad I used to live by. Shooot... all they did was strip out the fat and dump in empty carbs to make it taste richer:mad:. I eat the low carb/high fat salad dressing, non-oily nuts (not peanuts, oily = not so good), etc. Maybe it's helped my neuro health without even knowing it. Thanks for that:).

Aggie_Ama

10-09-2008, 09:54 PM

Oakleaf- Honestly I feel like I cut out the full of sugar sodas I used to have and no drink Diet in moderation. I was already drinking diet though. I added fruit but subtracted fried foods (was eating 4x a week minimum). I still have candy and sweets so it isn't a complete absence of that. I just don't see the big arrow saying "silly put this back". BUt maybe the doctor can have a -ha moment. I did cut out nuts, maybe some trail mix instead of candy would help.

Miranda- Thank you so much.

The weird thing is last time when I initially developed the tremor it never leveled off. It amplified until I got good and drugged up on the anti-convulsants (Neurontin then Primidone). The doctors at Baylor were insistant that the weight loss was just a random coincidence but I can't buy that now. I was completely med free in December and weighed 165-170 but was also completely shake free. I am now a 155-157 and starting to tremor.

It was such an emotional roller coaster in 2004 and although I know Primidone works I don't want to be on the meds. I am really upset and nervous about if it will get more intense. It is just a terrible feeling to not be able to calm my hand or write a grocery list.

Hopefully the doctors will be a little more willing to consider my diet and changes this time. I did learn from the past and I am very stern with the doctors, they may have med school but that doesn't mean they don't have to listen to me.

jesvetmed

10-09-2008, 11:37 PM

(((Amanda))): I wish you luck in figuring this out. How very frustrating. One thing I would recommend is that you ask to have your Vitamin D levels tested. Studies are showing tremendous links between low Vitamin D levels and neurological / neuromuscular diseases.

I know you live where the sun shines a LOT more than here in grey Washington, but it is still worth checking.

If you don't get any answers where you are, don't be afraid to look elsewhere... sounds like you've already done that once. Good for you. Only you can look out for your health.

Keep us posted.

newfsmith

10-10-2008, 07:11 AM

Before going on WW were you drinking a lot of non-diet soda, and are you now drinking a lot of diet soda? It wasn't clear from your reply. Like MSG, a lot of artificial sweeteners may have neurological effects. Maybe you need to avoid them. Try to think of the actual changes in what you are eating, not what your weight is. You might find a clue there.

I agree that it is not fair that you seem to have a choice between weight loss and tremor. Maybe you can get your neurologist to refer you to a really good clinical nutritionist with experience in neurologic conditions. Are you sure you are getting enough B-vitamins? I really think you should consult with your neurologist again.

Fredwina

10-10-2008, 08:30 AM

Another thing. I've been told BET is inherited. And yes, it runs in my mom's Family. Although it shouldn't start until you're in the 60's

Aggie_Ama

10-10-2008, 08:45 AM

Newf- I was already drinking diet soda but also regular. I am not taking a multi-vitamin (forget), that is something to tell my doctor.

Another thing. I've been told BET is inherited. And yes, it runs in my mom's Family. Although it shouldn't start until you're in the 60's

Yup, my father is adopted with limited knowledge of his birth family (we know how his parents died, his grandfather died and he still is in contact with a brother) so we aren't sure if someone had it. No one in my immediate family or on my mom's side has exhibited a tremor even though it is something like a 50% chance of passing it on.

Three neurologists (including the Baylor team) have diagnosed me and also stated I was a rare early onset case my first tremor diagnosis was at 23 and my tremors started shortly after my 23rd birthday. It does happen to younger people with some regularity but it is still more often an older age condition and because of that many never are diagnosed as they think it is just "old age". I also at the height of it I had it slightly in my leg which is rare and slightly in my voice. If it is indeed flaring back up it has only started faintly in my right hand. My handwriting is definitely indicative that the punk is back but there are other things to investigate before I start popping anti-convulsants again. :(

Fredwina

10-10-2008, 05:39 PM

it may be something in your diet/ daily regimen. I have to avoid caffeine

TahoeDirtGirl

10-10-2008, 08:32 PM

The only thing I could see would be that when I did WW for a short time, it sort of encouraged you to eat packaged stuff and do the point thing. Not sure if you're eating packaged stuff but I would start looking at some of that. I try not to use any artificial sweetners because I realized it was driving my eating off the charts. I was always hungry! Hope you figure it out...

Aggie_Ama

10-10-2008, 08:43 PM

I have an appointment Monday with my GP and the vampires. :rolleyes: I guess by end of next week I will know if my metabolic panel looks normal. My insurance covers a nutrionist so I will keep that in mind as well.

it may be something in your diet/ daily regimen. I have to avoid caffeine

Did you do a food diary? I write what I eat but not drink. I am voluntarily weening myself off caffeine starting tonight. Right now I drink 24-60 (!) ounces of Diet Dr Pepper a day plus 64+ ounces of water (hmmm wonder why I am always peeing?). I really cannot stand to sit at a desk all day and not drink so I am constantly drinking which keeps me from constantly eating. :rolleyes: But I want to get that to 12 oz soda and eventually ZERO. I am not even sure it is the caffeine, maybe it is the fizz and I can do Sprite or something caffeine free? Food for thought although I must say limiting caffeine before did not provide any noticeable results which was annoying.

The only thing I could see would be that when I did WW for a short time, it sort of encouraged you to eat packaged stuff and do the point thing. Not sure if you're eating packaged stuff but I would start looking at some of that. I try not to use any artificial sweetners because I realized it was driving my eating off the charts. I was always hungry! Hope you figure it out...

I am not eating much pre-packaged food. Just the lunches which I have done for 5 years and sometimes yogurt. But I am looking at what I ate the days I have had the tremor.

Fredwina

10-11-2008, 04:22 PM

I used to keep a food diary.

Aggie_Ama

10-13-2008, 12:21 PM

Ugh!!!! I went to my family practice doctor today and after doing the monkey tests (neuro baselines) he diagnosed a tremor. He is having me do a fasting blood panel in the morning just to be sure but he really thinks it will be unremarkable. At this point I haven't decided if I will make an appointment with my neurologist on one hand the leg tremor is much worse than before but the hand one is not. I hated primidone and the foggy feeling it left, I just don't want to take meds for this until it gets too bad to ignore. So I have to see what the blood test shows before calling my neurologist. I think I am in denial right now, I was supposed to be the rare person that it went away on.

On a side note, my doctor from today joined the practice earlier this year and I decided to switch from the founding doctor I had seen. I really like my current doctor they should make his bedside manner part of the curriculum in med school!

redrhodie

10-13-2008, 04:37 PM

Oh, that's too bad! I hope you can get it in control again without meds. I think you should go off the diet and see what happens.

Aggie_Ama

10-14-2008, 07:35 AM

Red- My doctor seemed supportive of Weight Watchers as a method. He was very interested in the correlation of weight loss and tremor flare up. He said he was headed to lunch after my appointment and planned some case reading, guess he was really interested. I am taking it day by day and week by week.

Still in denial about the return and the possibility of anti-convulsants again. I haven't hit rock bottom like before and I am still somewhat winning over the tremor at the moment. I will see if they get worse before calling the neurologist. Definitely still in denial that they will get worse. :rolleyes:

tulip

10-14-2008, 12:13 PM

Do you drink alot of caffeine--coffee, sodas? I can't imagine they would be helping the situation. I'm glad you have a doctor who seems interested and has good manners!

Miranda

10-14-2008, 04:40 PM

:(Hey hun... btw, I DO totally know what you mean about having to fight to get tx. I have had my share of exhausting go-arounds with the docs and ins co about things. For them, it's just another pa. For us, it's our lives feeling like they are literally falling apart before your eyes when you can't control what you body is doing! That alone is enough to make a person crazy. Bleah.

I'm glad you like the new doc. That sounds like it was a good move. Sometimes fresh eyes can over turn a rock that wasn't before. I think sometimes when the docs get frustrated that they don't have the answers, they just shut down. Some just have bed side manners like that of an sob.

IMHO :o, I wouldn't wait to call the neuro doc. Mine was always hard to get into for one thing. Maybe some new meds may have come out? I know what you mean about that too. Ghee, which of the lesser evils do I pick here??? Feel messed up by drugs... Or... feel messed up by the condition?

One of my things I got for tx was the IVIG (gamma globulin therapy). I'm sure you already know this, but it's a blood by product that's the antibodies extracted. Blood banking tid bit, it takes 10,000 donors to make up ONE bag of that stuff. I figured by the end of my ditch effort tx attempts I have a population of six figures worth of other peoples blood parts in me. Hmmm... wonder what effects progressive science will find from that 20yrs from now:rolleyes:.

But, I was happy to get it, as it was the only option for me. Again, lesser of the evils from ideal (be well). So thank you to folks who give blood. I don't know what would have happened to me without you.

I thought for sure too, just like you, that I was the lucky rare one that got better at the neuro's office. I told him, "I think it must be nice to see one of your pa get cured! ...I know with most of the population you work with that does not happen". Well, sure enough, when the beast reared her ugly head again, I was SOOOO devastated. I thought, is God punishing me for "bragging"... I TAKE IT BACK! But, it's just how the neuro junk goes sometimes. Actually, for me, when I tried to ignore it, I found I started having almost panic attacks... denial fighting reality in my mind. Then I'd say, "ok, Miranda, take yourself to the doc GF cuz this is not working either".

Maybe if you call and make the neuro appointment, it will bring good Karma? The beast will crawl back in it's cave at the thought of a fight. Fwiw. I wish I had a better answer. But just know you have positive thoughts coming your way. However you play it;):). (((hugs)))

Miranda

Aggie_Ama

10-19-2008, 05:27 PM

Well Miranda, I took the neuro appointment hoping for good karma or peace of mind. My neuro is so good I have to wait until November 17th to get in. That is an established patient appoitnment!:eek: In the mean time my tremor is amplifying and upseting me greatly. My friends do not understand how much this hurt the last time (not super close friends) and this weekend was razzing me about the shaking. I feel awful and angry. My GP said if it gets worse he will help me but he wants me to see the neuro. He said he would give me valium or what I used to take and call my neuro. I am still trying to hold out on the medicine. It isn't bad but it is now noticeable and that hurts. It is humiliating and frustrating. So it looks like I will be back on the meds in 30 days but then again maybe just maybe it will sink back into remission.

OakLeaf

10-19-2008, 05:52 PM

Aw, that s*cks. :(:(

Vent your frustration here all you like if it helps.

(((((Ama)))))

bmccasland

10-20-2008, 06:00 AM

more hugs Ama. I can't add anything, but we're here for you.

Hopefully your Docs can figure something out. Having your body do things with a mind of it's own can certainly be fustrating. Unfortunately telling your hand to "Sit!" "Stay!" just doesn't seem to work.

SouthernBelle

10-20-2008, 06:16 AM

A-A, I'm so sorry. Those don't sound like very good friends. To be honest, I would cut them off and if they ask why, tell them.

tulip

10-20-2008, 03:50 PM

(((Aggie))). Any chance that the neuro or regular doctor can provide some insight into what is causing the tremor, as opposed to simply treating the effects? So sorry to hear that you are having to deal with this!

maillotpois

10-20-2008, 03:58 PM

I have a friend who is really struggling with tremors right now, and it's tough. I agree with those who said people who are nosy or comment about it - what sort of friend are those?? I can't believe anyone would be so insensitive in this day and age, but it is happening with my friend as well. She tells people she really loves Michael J. Fox and is trying to emulate him.

Hang in there.

Aggie_Ama

10-20-2008, 05:59 PM

Thanks for the virtual hugs, I feel like I am on a pity party but I like Miranda I just thought I wouldn't see these again and not so soon after my neuro claimed me to be in remission!

About my friend.... Really he is a sweet guy we see a couple times a year. When the first flare of the tremors happened DH was interning away, my friend took me for margaritas (alcohol supposedly helps but not me), to a movie, anything to cheer me up. But being just a friend he wasn't there when I was crying my eyes out because I couldn't control it and he wasn't there when my mother drug me to Baylor because she was scared of how depressed I got. He is just the type that sometimes is a jerk and would die if he knew it hurt. It actually was a little smirk inducing, I couldn't keep the ice in my drink from clanking. But yes anyone else would have really hurt and if I put him in his place for it he would have felt terrible. I still should have told him where to go, he and I even talked about it being back but I just don't think he always connects with sensitivity. There are people you can excuse, this is one of the few but only this once.

Sarah- Yep I had complete strangers ask me if everything was okay. Tell me to take a deep breath and it would pass. Doesn't work that way like Beth said I can't tell my hand or leg to stop! I hope your friend is able to find something for hers. I read an excellent book she might look into "I Can't Stop Shaking". I got it through www.wemove.org, a fabulous resource for movement disorders. Both really helped me before because I didn't know anyone else with this and was desperate to hear it wasn't just me even if I felt like it.

Tulip- I am trying to stay off valium or getting primidone until I go to the neuro. I have never seen a competent one when I was completely drug free. I plan to write (or type depending on how bad they get) my questions so I can't forget a one. Like why on earth is this weight correlated and what new meds are out there.

We had discussed Botox but he would send me back to Baylor for that because he doesn't feel anyone in Austin in qualified to do it on my dominant hand. But that isn't a guarantee and it is hard to get insurance to cover. My mom said just no deep brain stimulation which is a scary treatment for the worst conditions.

emily_in_nc

10-20-2008, 06:17 PM

I am so sorry for what you are going through -- I can't even imagine how frustrating and embarrassing that would be. I know it would be very upsetting to me!

As for comments from well-meaning friends, it's so hard to know what to say in situations like this. I work with a great guy who has hand tremors, and to be honest, I have no idea why. From time to time he'll comment on his terrible handwriting or that his hand is shaking, but I'm too shy to ask him why -- don't want to say something insensitive or nosy or to pry, though I am curious. He's been like this for years, and it doesn't appear that it's gotten worse, but no better either.

I sincerely hope that you can get to the bottom of your condition and find an appropriate treatment that doesn't leave you with terrible side effects. I really feel for you! :( :mad:

Tuckervill

10-20-2008, 09:50 PM

My mom's hands shake some, but it's because she's an alcoholic. So, you know, there are lots of reasons it can happen, so I wouldn't pry, either. What I do when I encounter a situation like that is ask, "Can I help with that?" whatever the task may be. Like I offer to open doors for people in wheelchairs (or moms with strollers), and I offer to help little old ladies who can't reach the top shelf in the grocery store (I usually volunteer my husband or my son for that one cuz I'm short, too). I don't just DO it without asking, though. Otherwise, it's none of my business why my friend/coworker/stranger has an obvious tremor/wheelchair/shortness. :)

If they want to tell me, as a result of my offering, then I might then be willing to listen. Of course, if I had a good friend with an obvious tremor, I'd be really concerned about her health and have to ask about it. It'd be my duty as her friend.

Karen

Aggie_Ama

10-21-2008, 06:37 AM

Yup my dad's mom shakes because she used to drink a handle of Jim Beam every couple days. She adopted my dad so it isn't the missing link to my tremor. Just a sad old lady with alzheimers and addiction. :(

Emily- My mom works with someone like your co-worker. Now she wonders but doesn't ask him either. It is the fine line of being concerned or just making them feel so small because you noticed. I would prefer 9/10 times that no one says a word.

emily_in_nc

10-21-2008, 07:47 PM

Emily- My mom works with someone like your co-worker. Now she wonders but doesn't ask him either. It is the fine line of being concerned or just making them feel so small because you noticed. I would prefer 9/10 times that no one says a word.

Yeah, that's my thought and why I haven't said anything. But the fact that he's mentioned his tremor several times almost makes me wonder if he *wants* me to ask -- like he wants to talk about it.

I know he drinks, but hopefully not to the extent that it would cause tremors like he has. He's a good worker, been married for years, and very dependable, not the type you'd imagine to be a serious alcoholic, but I'm sure in some cases you just never know what's going on at home....so I'll keep my mouth shut.