Describing symptoms to dr

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vickim

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I have a hard time describing some of my symp toms to my doctor. So I will ask you all for help with it.

Since the middle of january I have a sensation of gravity pulling me down, even when I am sitting still. The room doesn't spin but it feels like the floor is moving when I walk. Is that vertigo?

I don't see the floor moving but it feels like the floor is wavy and I am going up and down and trying to walk. When I am sitting I feel like I am made of lead and too heavy and I will sink to the floor. Do any of you have that? It is everyday and nearly all day long.
 
Hi Vickim I don't know if we have the same symptom but when I walk it seems like I'm walking on something soft, like I'm walking on a mattress and not on the floor. I said it to my neuro and he asked me if I also see the floor moving and I aswer no....anyway he said it's some kind of vertigo and said I have some problems with my balance :(
 
Yes thats it ! I couldn't have described it better. Did he give you any advice on it? I haven't fallen yet, I use a cane when I am shopping or walking a long distance and around the house I have furniture and walls for support. It is the strangest feeling. I don't understand why this has just started, I guess I will ask my doctor when I go in april.
 
Sounds disturbing vickim,never had that problem however i have had the heaviness in legs which is due to muscle fatigue.
I have had virtigo before but i would feel like the room was tipping over to the right,it would even do it when sat down.
Kiara could be right,i notice if i am off balance i tend to fall to the right so it could fit in with the vertigo.
It can be so hard describing symptoms,i get a vibration feeling in legs/feet even though i have no sensory problems........it gets worse when spasticity is bad so i think its connected to that.
Neuro's dont really understand our descriptions as they only go by medical books and not personal experience.
 
I have this heaviness feeling even when I am sitting. It hard to get out of the chair. When I bend over the dishwasher to load or unload I feel like I could topple over. It feels fuzzy in my head. But I don't see the room or floor moving it just feels like its moving. Crazy huh?

I totally get the dr understanding what I am trying to describe, he looks at me like I am talking a foreign language.
 
Thats muscle fatigue vickrim.....plus mixed with spasticity and stiffness.
When i lived in my house if i was bad my son would have to lift my feet/legs one at a time to get me upstairs,thankfully i am in a one floor home now.
 
I really hate all this, oh I would love just a few moments of normal. I am so tired of being tired and sick. I guess I will ask the dr if the mestinon is no longer working or change the dose.

Why us? What did we do to deserve this? I just don't understand sometimes. Crap :cry:
 
Vicki
Talk to a PT at the ALS clinic. they are much better with mobility discussions- lots more experience. i bet a PT could help
Dawne
 
I live in a very rural area and the nearest als clinic is over 100 miles away. I do not have als. I have mitochondrial myopathy which is still a neuromuscle disease, but it is excercise intolerate. I can ask my dr when I go in april about pt. Thank you for thinking of me.
 
The strange thing is that you are having these balance issues Vickim. I have always thought my balance problems were related to my spasticity and hyperreflexia but now I see you're having same feeling even if you don't have a motor neuron disease. I know that mitochondrial myopathy can cause sever muscle weakness....is it possible you're experiencing weakness in your neck muscles? vertigo and balance issues are often related to cervical spine problems. Are these problems always the same or do they seem to get worse when you're tired? I don't understand why these awful diseases do exist! sending you an hug
 
I guess I will have to ask the dr in april when I go. My vertigo starts about an hour after I get up in the morning and lasts most of the day. My dr did say at my last appt that he noticed some neck weakness. This sensation is really making me crazy, I guess it is part of my new normal. Sending you hugs back!
 
What meds are you on? I can get some weird sensations from some of the ones I take.
 
I take mestinon 60 mg 3 times a day and 200mg of gabapentin 2 times a days. I am going to the dr for a 6 month check in april and I will ask him if this is progression or something else. It is an awful feeling and it is lasting nearly all day everyday.
 
Did it by any chance start anytime near the time you started the gabapentin (neurontin) I had all kinds of issues when they put me on it. I was on a much much higher dose, but I wouldn't wish it on my worst enemy. It's an evil drug

Dizziness and balance issues are COMMON side effects--please don't take my word on it--do a bit of research. Here's just one article snippet from Mayo Clinic

What are common side effects of Neurontin? How can I manage side effects?
Answer
from Cheolsu Shin, M.D.

Gabapentin (Neurontin) is a medication used to help manage certain epileptic seizures and relieve pain in some painful conditions. Common Neurontin side effects are dizziness and drowsiness. Some people may also experience weight gain and unsteadiness.

Also, it's important to note that in January 2008, the Food and Drug Administration (FDA) concluded that people taking anti-seizure (anti-epileptic) drugs, including Neurontin, may have an increased risk of suicidal thoughts and behavior.


And from WebMd:

Does Neurontin Oral have side effects?

The following side effects are associated with Neurontin Oral:

Common side effects of Neurontin Oral:
Involuntary Eye Movement Severe
Uncoordinated Severe
Blurred Vision Less Severe
Problems with Eyesight Less Severe
Muscle Pain Less Severe
Drowsiness Less Severe
Inducing of a Relaxed Easy State Less Severe
Dizzy Less Severe
Low Energy Less Severe
Fluid Retention in the Legs, Feet, Arms or Hands Less Severe

Infrequent side effects of Neurontin Oral:
Depression Severe
High Blood Pressure Severe
Loss of Memory Severe
Mental Impairment Severe
Easily Angered or Annoyed Severe
Mood Changes Severe
Lazy Eye Less Severe
Double Vision Less Severe
Middle Ear Infection Less Severe
Dry Mouth Less Severe
Incomplete or Infrequent Bowel Movements Less Severe
Urinary Tract Infection Less Severe
Involuntary Quivering Less Severe
Puffy Face from Water Retention Less Severe
Weight Gain Less Severe
Feel Like Throwing Up Less Severe
Gas Less Severe
Diarrhea Less Severe
Sluggishness Less Severe
Feeling Weak Less Severe
Not Feeling Well Less Severe

Rare side effects of Neurontin Oral:
Feeling Anger Toward Something Severe
Hyperactive Behavior Severe
Yellowing of Skin or Eyes from Liver Problems Severe
Multiple Organ Failure Severe
Pneumonia Severe
Erythema Multiforme Severe
Stevens-Johnson Syndrome Severe
Swollen Lymph Nodes Severe
Abnormal Liver Function Tests Severe
Weak Reflexes Severe
Giant Hives Severe
Allergic Reaction caused by a Drug Severe
Numbness and Tingling Severe
Low Amount of Sodium in the Blood Severe
Large Purple or Brown Skin Blotches Severe
Decreased White Blood Cells Severe
Increased Eosinophils in the Blood Severe
Confused Severe
Having Thoughts of Suicide Severe
Problem Behavior Less Severe
Pink Eye Less Severe
Ringing in the Ears Less Severe
Abnormally Low Blood Pressure Less Severe
Inflammation of the Nose Less Severe
Inflammation of the Gums Less Severe
Indigestion Less Severe
Irritation of the Stomach or Intestines Less Severe
Inability to have an Erection Less Severe
Enlarged Breasts Less Severe
Itching Less Severe
Joint Pain Less Severe
Cannot Focus Thoughts Less Severe
Sensation of Spinning or Whirling Less Severe
Chronic Trouble Sleeping Less Severe
Fever Less Severe
Excessive Sweating Less Severe
Pain Less Severe
Numbness Less Severe
Rash Less Severe
Loss of Appetite Less Severe
Head Pain Less Severe
Throat Dryness Less Severe
Difficulty Speaking Less Severe
Cough Less Severe
Throwing Up Less Severe
Cannot Empty Bladder Less Severe
Frequent Urination Less Severe
High Blood Sugar Less Severe
Exaggerated Deep Reflexes Less Severe
Anxious Less Severe





For me it caused brain fog, massive (as in admitted to hospital massive) swelling, unsteadiness, falling, major depression...the list goes on. I spent six months in a nursing home because it took me that long to realize it was the neurontin causing the horrid side effects.

And as an aside--Lyrica is the same darn drug with a different name and made so a smaller dose gives more of the med. I had no idea when I was put on Lyrica--just researched because I was having the same side-effects I'd had while on Neurontin.

They were fined 480 MILLION for false advertising it's 'benefits' -- and 2 felony charges. Not sure how they are getting away with it still. They were sued again in 2010.
 
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Gosh thanks for all the info. I have been on gabapentin for 2 years and haven't noticed anything. But like you said my dose is low. It does not take care of all my pain and twitches but it lessens it.

My vertigo if that is what it is started the middle of january. I don't know if its severe fatigue or actual vertigo. I thought vertigo you see the room or floor moving and I don't have that. It feels like the floor is moving in a wave as I am trying to walk. My body feels really heavy like I am going to sink into the floor. It feels the same when I am sitting.

I really appreciate all the info on gabapentin I didn't know half of those side effects. Hugs.
 
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