Hey Denise,

Thought I'm mention - You wrote:

I've also had trouble with vision for about 18 mos. I thought it was due to starting Lyrica, but even when I go off of it I still have trouble.

My question is: How long were you off it and still noticing problems? A few hours? Days? Weeks?

The reason I ask is this....When my husband was first diagnosed with RSD they put him on Neurontin - (Neurontin is the answer or sister product of Lyrica - Neurontin was involved with a very large class action lawsuit - a short time later they came out with Lyrica with the FDA's blessings on something Neurontin DID NOT have...)

Anyways, When he was on Neurontin I read once (and I'd have to find that information again) that Neurontin could stay in your system/body and one could have side effects for up to 3 years AFTER taking the medication. THATS PRETTY DARN SCARY. My thought is, is that if you were just off the Lyrica for a few days I'm guessing its more then probable you were still experience the side effects (blurred vision) from the Lyrica.

It concerns me that people/patients are often unaware (mis-informed) of how long these meds can "linger" on in our bodies...weeks, months, years later. The Dr's dont tell us this AND it's written in that tiny, tiny print at the bottom of the page IF it's there at all....

SCARY!!!

Thanks HubbyWithRSD,

Wow! 3 years! I would go off Lyrica between one week and three weeks, I guess. I knew it may still be in my system, somewhat, for at least 1 to 2 weeks, but at least mild enough that I would notice a difference with my sight, particularly when I'd stay off of it three weeks (maybe longer).

Also, I'd already been having vision problems before they started me on Lyrica. Usually I can go 3 - 5 years with the same glasses before my vision changes. But it had been only aabout 11 months after getting new glasses that I started having trouble. I still put off going for the eye exam for at least 6 mos, due to money limitations. And it was during those 6 mos that they started the Lyrica.

So, I don't know for sure if it was just normal eye weakening, or the RSD (which I believe affects my occipital nerves), or is the Lyrica. I do believe the Lyrica made it worse, no matter what precipated it!

I also can't think or talk straight on the Lyrica at higher doses. So, that scared me too.

But at least I could function better than when the pain is a 9 & 10 24/7!!!

I appreciate all the advice. Thanks again, guys!

Denise

my TOS spasms and triggerpoints will cause my vision to get worse because at times it is normal {well ,for a 51 yr old person anyway} and other times it is blurry and hard to focus on close objects.
those same things can also affect my voice, speech, concentration, swallowing, memory--- luckily don't have to deal with those problems too often anymore.
******************************************
TOS SYMPTOMS

UPPER EXTREMITY -ARTERIAL
NUMBNESS OF ARMS AND HANDS
TINGLING OF ARMS AND HANDS
POSITIONAL WEAKNESS OF ARMS AND HANDS

VENOUS
SWELLING OF FINGERS AND HANDS
HEAVINESS OF THE UPPER EXTREMITY

NERVES
UPPER EXTREMITY PAIN
PARESTHESIAS OF ULNAR DISTRIBUTION
WEAKNESS OF THE HANDS
CLUMSINESS OF THE HANDS
COLDNESS OF THE HANDS
TIREDNESS, HEAVINESS AND PARESTHESIAS ON ELEVATION OF ARMS

SHOULDER AND NECK ==PAIN - TIGHTNESS

CHEST WALL ==ANGINAL CHEST PAIN & INTER-PARA SCAPULAR PAIN

HEAD == HEADACHES & FUNNY FEELINGS IN FACE AND EAR

VERTEBRAL ARTERY
DIZZINESS, LIGHTHEADNESS
VERTIGO, SYNCOPE
DIPLOPIA, DYSARTHRIA, DYSPHONIA, DYSPHAGIA= {these have to do with - vision, speech, swallowing, and voice}
TINNITUS, EAR PAIN

THORACIC OUTLET SYNDROME SYMPTOMS

The predisposing factors responsive for the development of thoracic outlet syndrome are fibromuscular bands, bony protuberances and long or larger transverse processes, this together with the tendinous or cartilaginous muscular insertions are responsible for the compression of the neurovascular structures at the thoracic outlet.

These abnormalities or variations of the anatomy of this area produce symptoms of thoracic outlet syndrome that have been triggered by trauma or repetitive work. The symptoms may spontaneously occur because there are patients who have symptoms of thoracic outlet syndrome without a history of trauma or repetitive work. The compression occurs in three anatomical structures, arteries, veins and nerves; isolated, or more commonly two or three of the structures are compressed. Compression can be of different magnitude in each of these structures. Therefore symptoms can be protean.

For example, the subclavian vein can be the only compressed structure and this patient might have a thrombosis of the vein that was called in the past effort thrombosis, or a swelling of the fingers. The subclavian artery can also be compressed with symptoms of temporary, arterial, positional insufficiency of the upper extremity. When they are present for a long time, aneurysm and thrombosis of the subclavian artery may develop with distal embolization. Nerve compression of the brachial plexus is very common and is or not associated with venous or arterial compression. Neurocompression can exist without vascular compression.

The intermingling of all this compressions, the degree, and which of the three anatomical structure is the most compressed, might produce protean manifestations of the symptoms in these patients. They are difficult to interpret unless the health provider is aware of the symptoms and the physical examination of thoracic outlet syndrome.

If any individual who has a predisposition for thoracic outlet syndrome performs repetitive work with the upper extremity, it is very likely that he will begin to have symptoms in the first few months after he or she starts to work. On the other hand, some people who may have predisposition may take a longer time and it would take years of repetitive work to show the symptoms of thoracic outlet syndrome.

They may have had symptoms for a long time, without being aware of them, and at one point in time the symptoms become worse and this is when they are first noticed. The individual is affected because he feels tinglingness and weakness and heaviness of the hands and arms, pains in the chest, pain in the upper back and in the neck. It is difficult now to perform the same type of work that before was easy to do. Also the weakness of the hands, sometimes dropping of objects, make it difficult to perform repetitive work.

What symptoms does the patient have? The patient may have few or many symptoms. You can see in the web page the origin of the symptoms, the name of the symptoms, and how they can be classified; they can be together, separate, or isolated and can have a venous, arterial, or neurologic origin. The symptoms also refer to the structure that is compressed and the degree and the association with the others. Some of the manifestations are protean, like anterior chest pains, and if the doctors are unaware of this manifestations, the diagnosis is difficult to make.
above is from this- http://tos-syndrome.com/newpage12.htm

and TrP info at-
http://www.pressurepointer.com/pain_reference_chart.htm

Thank you Jo55!

This was very interesting! No wonder some of my docs commented they thought I had symptoms of TOS. It was the brachial plexus "type". At least from what I could, sort of, understand. I did medical billing for many years & have some understanding of terms. But some of these medical terms were really hard to understand (& I don't have access to a medical dictionary anymore). No matter.

I guess the docs still feel it's due to the RCT(s), & ulnar nerve neuropathy, & RSD, that so much spasms exist, that (I think) this is what causes TOS symptoms. So, by "treating" all the other stuff, it "treats" the TOS symptoms in me.

Thanks again, for everyone's input!

Denise

Hi Jo55,

I just "tried out" the new "Thanks!" button. But I wanted to write a note too. Thanks for all your medical info. I really appreciate all the effort you always put into your responses to people. So thorough & informative!

I've been struggling a lot lately. I've had pain on both sides of my chest (previously, just the right side, same as the bad arm). I'm beginning to think I probably do have TOS.

Hope you're doing okay! Have a great week,

Denise

Hi HwRSD,

Haven't been able to spend much time on the computer recently, but I needed to get back to you about this post, it has been worrying me.

I am worried about this information you give here (3 years???) and need to see the reference you found stating that Neurontin stays in the body differently from the PI statement.

Here is the information the PI sheet gives:
"Pharmacokinetics: Adults: Following oral administration of gabapentin, peak plasma concentrations are observed within 2 to 3 hours. Absolute bioavailability of a 300 mg dose of Neurontin capsules is approximately 59%. At doses of 300 and 400 mg, gabapentin bioavailability is unchanged following multiple dose administration. Neurontin 600 mg and 800 mg tablets are bioequivalent to two 300 mg capsules and two 400 mg capsules, respectively. The results of a single-dose, 2-way crossover, comparative bioavailability study in the fasted state comparing Neurontin 600 mg tablets and 2 ´ 300 mg Neurontin capsules are summarized in Table I.

Gabapentin elimination from plasma is best described by linear pharmacokinetics. The elimination half-life of gabapentin is independent of dose and averages 5 to 7 hours in subjects with normal renal function.

Plasma gabapentin concentrations are dose-proportional at doses of 300 to 400 mg q8h, ranging between 1 µg/mL and 10 µg/mL, but are less than dose-proportional above the clinical range (>600 mg q8h). There is no correlation between plasma levels and efficacy. Gabapentin pharmacokinetics are not affected by repeated administration, and steady-state plasma concentrations are predictable from single-dose data.

Gabapentin is not appreciably metabolized in humans, is eliminated solely by renal excretion, and can be removed from plasma by hemodialysis.

Gabapentin does not induce or inhibit hepatic mixed function oxidase enzymes responsible for drug metabolism, does not interfere with the metabolism of commonly coadministered antiepileptic drugs, and is minimally bound to plasma proteins.

Food has no effect on the rate or extent of absorption of gabapentin."

So, in fact gabapentin has a very short half-life (the amount of time it takes for half the amount of a drug in the blood to be eliminated by the body), 5 - 7 hours, and the information above says that this is not affected by how long you've been taking it. I've looked up the subject on the net and can't find anything to back up your information...could you post an URL, please? Or say where you found the information?

Also, I understood (actually I think we RSders know quite a bit about our meds!) that the main trouble surrounding Neurontin a few years ago was a scam between Pfizer, the med reps and doctors, rather than a problem with the medication itself, which is what your post implies. It was approved by drug-controlling bodies worldwide, including the FDA. If you mean that it wasn't approved specifically for RSD, *nothing* is, we can only take "off-label" drugs because there aren't any "on-label" drugs.

Sorry to be a pain, but I've been wondering about these comments, so I'd really like to see where you got the ideas. We need to be pretty sure about posting "fact" and "rumour" when it comes to meds - a totally different thing from posting one's own experiences. In fact, if you have any URLs for sites discussing how PI information differs from known facts, I'd appreciate that too.

BTW, many of us are on a lot of meds, it's true, and although it sounds like a "bad thing", RSD often goes hand in hand with other conditions, but it is a much worse thing for people to do without them....sad to say, but it's the way it goes. Many times these meds make the difference between someone being unable to function and consigned to a wheelchair, and leading some sort of fairly normal life. I can tell you that I would have a real problem working (which I have to do) without Neurontin. Lyrica (pregabelin), the "next generation" gabapentin med Pfizer developed after Neurontin, is stronger. Doesn't suit me personally, too strong.

Also, medication is becoming so much more "target-specific", rather than the generalized blanket drugging of old, that taking one targetting drug per specific problem makes much more sense....the trick for us, the patients, is to find a balance between them that works for us personally - and we all react differently.

I think one of the really useful things about this forum is that we compare our reactions to meds, both pharmaceutical and natural, as well as describing them for others, and we do try to be specific about references and warnings.

Hope your hubby is doing OK,
all the best

Hi Denise,

How did it go with the WC neurologist? Also, I meant to say before that if you look at the side effects for most of the meds we take for RSD, nearly all of them (!) include "blurred vision", it seems a common problem for many on this board.

Hope the doc appt went OK,

all the best

Hi Artist,

Thanks for your note. Yes, I've noticed that ALL meds say they can cause blurred vision! Aren't WE lucky! But, actually, I'd been on the same meds for at least 1 or 2 years without blurred vision when I suddenly began to have the blurred & double vision. So....who knows....it's not "the end of my world."

The visit with the Neurologist left me confused about whether or not it went okay. He was about 75 yrs old or older, & his wife who was about the same age was his nurse. She was hobbeling around with some type of brace on one of her ankles. Therefore, it was obvious he didn't believe in stopping work at the usual retirement age.

So, does that mean he doesn't "believe" in stopping work even when all a person, who lives alone, can do is care for their needs, i.e., shop, cook, "clean" house, etc? And even that can bring on excrutiating pain?
Also, he didn't ask me ONE question about what I can do with my hands, NOR did he even look at my hands (which were both mottled blue most of the time I was there), much less exam them.

All he did was ask me how the accident occurred, then measured my forearms & upper arms, & then used his little "hammer" to test my reflexes in my hands & arms. Maybe Neurologists routinely don't do any other exam of the hands/arms. All doc's are "looking" for different things. Another thing, he did seem annoyed that I'd only had one EMG test years ago, and he said he may have me come back for another one, after he had time to go through my records.

So, I'm just going to "believe" it was an okay visit.

But, can anyone else with hand/arm RSD tell me their experience with Neurologists? I mean, what kind of exam do they do?

Artist, I don't know how anyone works with RSD! I usually can barely sleep at night due to the pain being worse. I think that may be my biggest fear about trying to return to work force. Is your pain worse at night? Can you sleep? The increase I'm taking of Lyrica right now is "knocking me out", but then it takes me, literally, hours of drinking caffeine to feel like I can even talk. It is after 2 p.m., & there's NO WAY I could drive right now. I havenit gotten up to my previous dose until today. Hope I adjust soon.

A couple of years ago I went through training to become a volunteer for a nation-wide program called, "Trauma Intervention Program". We were on-call 3 days a month for a 12 hour shift. I had to drop out! I became very depressed about ever being able to "show up" for a regular job after that.

Thanks again, Artist, for your note! Sorry for being so "verbose". It's the Vicodin, I think!

Have a great week!

Denise


what

I have had a very hard time finding a good Neurologist. For some reason that job must be only a fly by night wants or at least 75% of them are. I have ran into some lulu's when it comes to Neurologist. I finally found a good one a few years back, he is the no. 2 in the U. S. for MS. and I really like him but he is at a loss at what to do for me but he has such a good heart and doesn't give up on anyone.

My advice would be to keep going to them until you find one that really will do something for you. I emailed you today in answer to yours and it sounds to me like you have TOS. This is just something that you might touch upon when you do find a good Neurologist but I would actually go to a TOS specialist. The Neurolgist usually only does the EMG to decide if you have TOS and they are most always negative. As far as the EMG's I have had 4 of them and they showed nothing but it doesn't mean you don't have the problem they are looking for. If you talk to the TOS forum you will see that EMG's aren't positive for many on there. So don't get disappointed if they don't show anything. Some do and some don't.

Don't give up on finding a good one because you can see from what a lot of go through in finding the right Drs. It's like looking for gold when you don't own a goldmine full of it.

I will also say that age doesn't matter. My first hand surgeon was great but he soon retired after he diagnosed me and my TOS surgeon is up in age. I always tease him about not retiring until I get my other TOS surgeon. Age doesn't matter.
Anyway

I've had puzzling appts like that, where you come out of the office and don't know what happened...I always reckon the doctor didn't have the time to see me properly and hope it'll be better next round...

Working? Ah. Well, for a start my RSD isn't nearly as bad as many people here have it; it has confined itself to my left wrist/hand (I'm right-handed) and in the last year has "plateau'd". The one thing that really made a difference was discovering that I simply can't take Neurontin in the "prescribed" manner, I'm very sensitive to it - it works well, but completely knocks me out at high doses, feel completely stoned like I've smoked several joints (quite nice, but forget it... )

So I take a very low dose - up to 600mgs pd, but I split the capsule, dissolve it in water and take very small amounts frequently through the day, then a double dose at night. This works very well for me, and pushes the pain into the background; I do get woken up at night, I take half a zopiclone, and great care arranging my bed - pillows, etc...but still wake up often. Then lots of coffee in the morning, don't care if I shouldn't, I neeeeeeeed it!!

At the moment the RSD is really behaving itself.... I have RSI in my right hand and arm which is a bigger problem at present, plus cervical neck bone problems. Also arthritis, specially in my fingers (gone crooked). Most of the pain-killers I take right now are to help with the RSI, and to help with a permanent headache...mechanical problems from the neck ...

Know what? If anyone had told me before that you can get used to pain I wouldn't have believed them. But it's true, for me - as I said, though, my levels are usually under control - for now. Get flare-ups every now and then.

Also, I work from home. My work has always been very much a part of my life. If I live, I work...I'm doing designs for sculptures at the moment (which I absolutely love doing) - mostly on computer. Just walking the dog, I'll see something - shape of a tree, or rock, and think - oh, I can use that - so everything I do is kind of work.

Other thing is that, not to put too fine a point on it, I have no money at all. I *have to* work or my rent won't get paid. Literally. Necessity is a powerful motivator.

I don't think too far down the road...too worrying to do that, and pointless. I'm doing as much as I can to help myself right now (not enough, but still) and next year...who knows?? Not me; I live for now, and right now I *can* still work, painful though it is. It would be just as painful if I didn't work..I think working keeps my mind off the pain. What is harder to cope with are the meetings with clients etc, I try to keep them to a minimum - I'm getting very reclusive in my old age.

But, my legs still work well, my brain's fine if memory would just shape up a bit, still got a few good working parts of me...life goes on and as I said, for me, life and work are completely entwined. Yeah...life goes on...what can you do?

all the best!