Calling all limbo-landers limbo check in 1/17/2012

[MarkLavelle]

Mark, do you notice if the gabapentin reduces your mental acuity or leaves you with any "fog"? A neurologist suggested it to me not long ago for cluster headaches, but I was leery because I'd heard that it had an impact on alertness.

Not that I've noticed, but I generally only take it in the evening or at bed time, and not very much...

[Greg]

Gabapentine aka nuerotine state in the side effects that it can cuase dizziness and memory issues. Which brings up the question sence one of my sx's is bad short term memory how much of my memory issues are due to the watchamacallit or my meds? It is pretty bad when the pain meds and the muscle relaxers though I dont have yet can cuase alot of the sx's I/we already experience.

[jumpinjiminy]

Wow. Derrie. Cadmium? I do wish someone would have tested me for heavy metals back when this started. It wasn't even on the radar for the pros. The last neuro tested for copper toxicity, though.

Keep us posted.

[derrie]

wow. what are the symptoms of excess cadmium I wonder? do you travel out of the country regularly? eat any exotic food specialities?

Nope to all of those questions. I am vegan, have a varied diet, don't really have the resources to travel, and have even moved halfway across the country during the middle of my neurological issues. The only vector for exposure to something like this, from what I can figure, is my tea kettle. I drink a lot of tea. So, I have set the kettle aside for now, while I get my cadmium levels rechecked.

Wow. Derrie. Cadmium? I do wish someone would have tested me for heavy metals back when this started. It wasn't even on the radar for the pros. The last neuro tested for copper toxicity, though.

I think if you're having diffuse neurological symptoms, it's definitely good to screen for heavy metals, including lead, arsenic, and mercury. Cadmium was just part of the standard screen for the 24 hour urine heavy metal test. One thing to note-- my blood levels for heavy metals have always been normal. Apparently the 24 hour urine test is more sensitive to total body load of the metals, if you're dealing with chronic exposure.

From what I can tell, cadmium toxicity is usually implicated in kidney damage and bone damage. All the standard information I could find indicates no established link between high levels of cadmium and neurological issues. However, high levels of cadmium have apparently caused neurological damage in lab animals. Also, I found one study that found that found higher rates of peripheral neuropathy and neuropsychological damage in workers who had high cadmium levels in their bodies after an entire adulthood of industrial cadmium exposure. But that was after a lifetime of exposure.

So! What does that mean for me? Well, I still tend to agree with my doctor that this is either (1) a lab error, or (2) a lucky catch that has nothing to do with my neurological issues, but that may have saved me kidney damage. Of course, my Mom so helpfully added that this could also be a third possibility-- a lucky break for my neurologist, who will soon publish the first case study on the neurotoxicity of cadmium.

Ha.

Please, everyone, cross your fingers or pray or do what you do that this was a lab error and that I do not have excess cadmium in my body. There is no treatment for cadmium poisoning, finding the source could be very difficult, and any damage to my kidneys and the rest of my body would be permanent. So, anyway, I'd rather still be in limbo than find out this cadmium poisoning is real.

Craziness, huh?

[mommyRN]

Neuro appt

I posted a new thread to follow up on my neuro appt, in short, all that was really found was a VERY low ferritin (5, neuro says anything less than 20 is severely low).

Has anyone else had this? Could this be the cause of all my problems?

The neuro doesn't seem to think so, and wants to proceed with a lumbar puncture. But reading the list of symptoms it appears low ferritin could explain a lot.

[lynnepynne]

jsage,
I am gonna jump on in in the gabapentin discussion with my two cents.
I take 1200mgs a day (I started with 600 a day and have worked my way up) and I'll say the effects in the beginning were quite profound. I was dizzy, off balance, sleepy and my myoclonic jerks (which I had before) were crazy. I felt like wacked out on drugs for a number of hours per day (surrounding my doses) for the first while. And like I said: the side effects do get better with time.

But I NEEDED this drug (I have Atypical Trigeminal Neuralgia, which I am sure you having cluster headaches should be able to relate to) and I stuck it out. The side effects did calm down tremendously. And I think as far as pain meds go: there is much much worse in terms of side effects. The relief was great (not instant, but it works for me)

I am a single working mom of three and I HAD to function and I got through this, so I figure unless you are an air traffic controller or a surgeon these side effects are doable. (I did decline to drive sometimes when I found the side effects to be troublesome in the beginning)

Now Derrie,
holy cow. I am speechless.
I am thinking of you and hoping this is a lab mistake.
(and feeling like asking my doc about heavy metal testing as well...)
Best wishes to you!
Lynne

[jsage]

jsage, I am gonna jump on in in the gabapentin discussion with my two cents

Lynne, your two cents are very welcome! And thanks Mark and Greg for your input too.

My discomfort lies in taking meds to deal with the symptoms of an unknown condition. I do need to be alert - I travel weekly and am often on one of our factory floors. On the other hand I'm considering asking about Provigil because my ability to organize and execute has been seriously compromised.

And Lynne, I got control of the cluster headaches by doing two things at the suggestion of my PCP ten years ago: stop taking aspirin or any other painkiller for headaches and take an occasional Ambien to ensure adequate sleep. I had a sub-arachnoid cyst removed from my brain thirty-one years ago - that is the bogeyman that shadows every headache and symptom I've had since then.

Kicking the analgesic and insomnia cycle reduced the cluster headaches quite considerably. Now they are very rare.

Thanks again Lynne, Mark and Greg - your input is very valuable to me.

enjoy the rest of your Sunday!
- john

[derrie]

I posted a new thread to follow up on my neuro appt, in short, all that was really found was a VERY low ferritin (5, neuro says anything less than 20 is severely low).

Has anyone else had this? Could this be the cause of all my problems?

The neuro doesn't seem to think so, and wants to proceed with a lumbar puncture. But reading the list of symptoms it appears low ferritin could explain a lot.

Hey, I haven't followed exactly what your symptoms are, but yes, low ferritin can cause neurological symptoms, including symptoms similar to restless leg syndrome, like strange sensations in the extremities and periodic leg movements.

For those of you unfamiliar, ferritin is part of how the body stores iron, so a low ferritin means you are iron deficient, even if you are not yet anemic. Low ferritin means your body is using more iron than it is getting back. I had a low ferritin about three months ago. Mine was 9. My neurologist felt like that could be the source of my problems, so I started iron-replacement therapy (taking a strong iron supplement for three months). I finished that replacement therapy, and my symptoms remain, so low ferritin was probably just a random catch. However, being vegan, it means I probably just need to watch my iron intake and get more of it.

So, mommyRN, you should talk to your doctor about doing the three months of iron pills. Also, he may want to look into other reasons you have low ferritin, which is not uncommon in women. Do you have a low dietary intake? Or is there another problem, such a low level of intestinal bleeding?

Anyhoo, that's what I know about ferritin.

I should know about the cadmium test tomorrow. Neerrrrrvvvvouuuusss.

[mommyRN]

derrie- The cadmium is an interesting finding, I did the 24 hour urine, what a pain! Luckily mine came back normal. Hopefully yours will too, maybe a lab error. Keep us posted!

I eat a regular diet, lots of meats and leafy greens. The only think I can think is heavy monthly cycles. I'll see my primary doctor 2/8/12 for my annual exam and she said she'd address the ferritin level then.

Here I was freaked out, thinking I was "critically low" and this was causing all my problems, but it seems like neither the neuro or my PCP think it's a major issue.

I do believe several of my problems (RLS, hair loss, fatigue, and others) could be related to the ferritin. I just wish it explained it all. Here's hoping!

Have a great week!

[mjan]

Nope to all of those questions. I am vegan, have a varied diet, don't really have the resources to travel, and have even moved halfway across the country during the middle of my neurological issues. The only vector for exposure to something like this, from what I can figure, is my tea kettle. I drink a lot of tea. So, I have set the kettle aside for now, while I get my cadmium levels rechecked.



I think if you're having diffuse neurological symptoms, it's definitely good to screen for heavy metals, including lead, arsenic, and mercury. Cadmium was just part of the standard screen for the 24 hour urine heavy metal test. One thing to note-- my blood levels for heavy metals have always been normal. Apparently the 24 hour urine test is more sensitive to total body load of the metals, if you're dealing with chronic exposure.

From what I can tell, cadmium toxicity is usually implicated in kidney damage and bone damage. All the standard information I could find indicates no established link between high levels of cadmium and neurological issues. However, high levels of cadmium have apparently caused neurological damage in lab animals. Also, I found one study that found that found higher rates of peripheral neuropathy and neuropsychological damage in workers who had high cadmium levels in their bodies after an entire adulthood of industrial cadmium exposure. But that was after a lifetime of exposure.

So! What does that mean for me? Well, I still tend to agree with my doctor that this is either (1) a lab error, or (2) a lucky catch that has nothing to do with my neurological issues, but that may have saved me kidney damage. Of course, my Mom so helpfully added that this could also be a third possibility-- a lucky break for my neurologist, who will soon publish the first case study on the neurotoxicity of cadmium.

Ha.

Please, everyone, cross your fingers or pray or do what you do that this was a lab error and that I do not have excess cadmium in my body. There is no treatment for cadmium poisoning, finding the source could be very difficult, and any damage to my kidneys and the rest of my body would be permanent. So, anyway, I'd rather still be in limbo than find out this cadmium poisoning is real.

Craziness, huh?

Sorry you are going through this. IF you can find a nutritionist or chiropractor trained in NRI=nutritional response testing, THEY can find any and all chemicals, including heavy metals and substances you could be toxic. Its an amazing evalaution and not too expensive. You'd be surprised how plastics, esp microwaves etc has heavy metals involved. I had to have mercury detoxed 3 times..my husband had too much chlorine from swimming hours in pool and finally he lost consciousness and nearly drowned. He had to have CPR.

Toxicity is REAL and docs do not always know this complete testing in NRT. As a result many of my neuro symptoms improved. Good luck~ Jan

[minivanmama]

Hi everyone. What a week it has been. I am going to start the new thread now.

I hope to see everyone on the island soon.(((hugs)))

Moderator can you lock this thread so that we can post on the new thread. Thank you and (((hugs)))