Balance and Coordination

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RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 668
   Posted 8/8/2014 1:00 PM (GMT -6)   
Is anyone else having these types of problems?

I have a "seizure condition" (epilepsy). I've been on dilantin and pheonobarb for 44 yrs
and now, as a result of the long term usage of the MEDs I have severe balance and coordination issues.
This is just one of the long term side effects among others.

I can't walk straight (I constantly stagger when I walk) and trip very easily.

My manual dexterity and hand/eye coordination is shot.
My wife gets mad because I can't help her do up the clasp on her necklace and/or bracelate.

I know there's not much I can do about it but I'm getting sick and tired of everybody thinking that I'm a drunk and some ppl even think I have MS.

That being said,

The irony is that my seizures are 90% under control.
Any suggestions about how I may be able to overcome this problem?
__________________
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
Diagnosed with Epilepsy & Ulcerative Colitis.
Current Medications: Diantin 275mg, Pheonobarb 150mg, Asocol 3,000 mg.

JungRulz
Regular Member


Date Joined Jan 2014
Total Posts : 394
   Posted 8/11/2014 7:25 PM (GMT -6)   
Hi,

Are the following the names of the medications you have listed, I think your spelling is off a little.

Mesasal
Phenobarbital
Dilantin

A cursory check showed no drug interactions concerning gait or balance.

Of the dugs listed as ototoxic, potentially harmful to the ears and balance, I only saw Phenytoin.

"Other medications may cause temporary ototoxicity:

Anticonvulsants, such as phenytoin (Dilantin®) and carbamazepine (Tegretol®)
Antidepressants, such as clomipramine (Anafranil®) and amoxapine (Asendin®)
Antihypertensives, such as labetolol (Trandate® or Normodyne®) and enalapril (Vasotec®)
Loop diuretics, such as bumetanide (Bumex®) and furosemide (Lasix®)
Pain relievers, such as aspirin
Quinine (chloroquine, quinidine)"

www.lvhn.org/conditions_treatments/brain_and_nerves/balance_problems/ototoxicity/learn_about_ototoxicity

Drugs are metabolized by various mechanisms, liver and kidneys being common routes. Phenytoin is a medication that can have its metabolizing rate significantly effected by other medications, even over-the-counter medications. Because of this, you need to be careful with other medications that would be added to what you're taking now, prescription or over-the-counter. They have the potential to increase the level of phenytoin in your blood. This may worsen the effects of the phenytoin in terms of balance. Always consult with your doctor or pharmacist with medication questions.

Lastly, consulting a good ENT may be of value, to be sure there is not an underlying process occurring, and the ENT may be able to make suggestions on controlling your problem.

I take Phenytoin 300 mg twice a day, I've taken it for over 20 years. I've not had problems with it with the exception of some neuropathy.

gypsyflyer
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 8/11/2014 7:59 PM (GMT -6)   
You very well might have ms, I do years later after being diagnosed with idiopathic epilepsy. 2 positive EEGs...many kidney infections...text book ms actually in many ways. Those drs only care to pad their wallets with your money as big pharm goes round n round. I've also been taking phenobarb since around age 30, 59 now and as I said I can't walk very well now most of the time either but I DO have ms. Think. Positive EEGs are misfiring neurons , its NEURO...just common sense to me.

gypsyflyer
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 8/11/2014 8:02 PM (GMT -6)   
I wouldn't take Dilantin or any of those stupid drugs if they were the last thing on earth, zombieville, greedville. Want no part of it.

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 668
   Posted 8/12/2014 10:43 AM (GMT -6)   
JungRulz

1) My Neorologist keeps telling me that (as you've suggested) my "balance and coordination" issues are a side effect from long term use of Phenytoin (dilantin).
BTW ~ I now take 300mg per day.

2) I don't have any drug interactions however, I take "Mesasal"for my Ulcerative Colitis and one in a while, when I get a flare up, I have to double up my dosage of the Mesasal.
This paints a protective barrier on the lining of the bowel walls and as a result, the phenytoin making it harder to penetrate the bowel and enter the blood stream, then I have to compensate by increasing my phenytoin intake,(recommended by my Doctor) some times going toxic causing other problems.

3) As you said most people ignore this) but over the counter drugs CAN cause serious damage.especially cold or flu MEDs the contain antihystimine) as it can cause serious internal bleeding (I found this out the hard way).
Also, I can't take aspirin. The only pain MED I can take is Tylenol.

JungRulz
Regular Member


Date Joined Jan 2014
Total Posts : 394
   Posted 8/13/2014 7:33 PM (GMT -6)   
Hi RanMan,

For the drugs you listed I did not see interactions, I wasn't suggesting that, but anything new can unexpectedly be a problem.

Phenytoin saturates at some point, so that a slight increase in the dosage can produce a disproportionate increase in blood levels. It's not likely that you're at that point, but early toxicity shows as tremors and eye movements (nystagmus). See the link and excerpt below.

Another aspect of Dilantin is it is ordinarily metabolized quickly, but select drugs and substances can interfere with that rapid metabolism, so if you took some new medication or supplement that interfered with that metabolism, you can actually end up with high blood levels since the other drug prevented the Dilantin from being metabolized as normal. That's why it's important to check with your doctor or pharmacist, even before using over-the-counter drugs.

Lastly, Dilantin depletes Folic Acid, but when I take anything but the mildest Folic Acid supplements, say 100% of the Recommended Daily Allowance, I get break through seizures.

You may want to be sure your neurologist requests a blood test that is comprehensive enough to show electrolytes and vitamin levels. If B-12 works with Folic Acid, and Folic Acid, or the B-Series Vitamins are low, that may contribute to your problems as well. "DO NOT" start to take these substances without your doctor's approval. My doctor gave me B-12 pills, I had a lot more energy, but I also had significant seizure breakthrough.

Do the blood tests first and ask your Neurologist for guidance if you need to take supplements.

Also, see an ENT if you have not already done so.

labtestsonline.org/understanding/conditions/vitaminb12/

www.mayoclinic.org/diseases-conditions/vitamin-deficiency-anemia/basics/tests-diagnosis/con-20019550

www.nlm.nih.gov/medlineplus/ency/article/003037.htm

"ACQUIRED NYSTAGMUS

The most common cause of acquired nystagmus is certain drugs or medication. Phenytoin (Dilantin) - an antiseizure medication, excessive alcohol, or any sedating medicine can impair the labyrinth's function.

Other causes include:

Head injury from motor vehicle accidents
Inner ear disorders such as labyrinthitis or Meniere's disease
Stroke
Thiamine or vitamin B12 deficiency"

cilly
Veteran Member


Date Joined Aug 2014
Total Posts : 1345
   Posted 8/23/2014 12:45 AM (GMT -6)   
JungRulz said...
Hi RanMan,

For the drugs you listed I did not see interactions, I wasn't suggesting that, but anything new can unexpectedly be a problem.

Phenytoin saturates at some point, so that a slight increase in the dosage can produce a disproportionate increase in blood levels. It's not likely that you're at that point, but early toxicity shows as tremors and eye movements (nystagmus). See the link and excerpt below.

Another aspect of Dilantin is it is ordinarily metabolized quickly, but select drugs and substances can interfere with that rapid metabolism, so if you took some new medication or supplement that interfered with that metabolism, you can actually end up with high blood levels since the other drug prevented the Dilantin from being metabolized as normal. That's why it's important to check with your doctor or pharmacist, even before using over-the-counter drugs.

Lastly, Dilantin depletes Folic Acid, but when I take anything but the mildest Folic Acid supplements, say 100% of the Recommended Daily Allowance, I get break through seizures.

You may want to be sure your neurologist requests a blood test that is comprehensive enough to show electrolytes and vitamin levels. If B-12 works with Folic Acid, and Folic Acid, or the B-Series Vitamins are low, that may contribute to your problems as well. "DO NOT" start to take these substances without your doctor's approval. My doctor gave me B-12 pills, I had a lot more energy, but I also had significant seizure breakthrough.

Do the blood tests first and ask your Neurologist for guidance if you need to take supplements.

Also, see an ENT if you have not already done so.

labtestsonline.org/understanding/conditions/vitaminb12/

www.mayoclinic.org/diseases-conditions/vitamin-deficiency-anemia/basics/tests-diagnosis/con-20019550

www.nlm.nih.gov/medlineplus/ency/article/003037.htm

"ACQUIRED NYSTAGMUS

The most common cause of acquired nystagmus is certain drugs or medication. Phenytoin (Dilantin) - an antiseizure medication, excessive alcohol, or any sedating medicine can impair the labyrinth's function.

Other causes include:

Head injury from motor vehicle accidents
Inner ear disorders such as labyrinthitis or Meniere's disease
Stroke
Thiamine or vitamin B12 deficiency"


Does B12 cause side effects as headaches ...sorry to take thread over ?

JungRulz
Regular Member


Date Joined Jan 2014
Total Posts : 394
   Posted 8/23/2014 11:06 AM (GMT -6)   
Actually, it gave me seizure breakthrough. Same with Folic Acid.

Phenytoin causes decreased levels of Folic Acid and adding Folic Acid supplementation causes decreased blood levels of Phenytoin. It's suggested that Folic Acid supplementation be co-administered when Phenytoin therapy is initiated, and both Folic Acid and Phenytoin taken together as long as Phenytoin is being used.

www.ncbi.nlm.nih.gov/pubmed/8520091

I've had success recently by using Ensure once a day, Carnation Instant Breakfast once a day, a few different brands of vitamin water, and eating more fruits and vegetables that have levels of vitamins I'm looking for. This is done throughout the day. All the things I use each supply less than or near 100% of of the Recommended Daily Allowance of various vitamins, I avoid Energy drinks since many have many times the RDA.

There are limited side effects, though I didn't see headaches mentioned, how much are you using.

biho
New Member


Date Joined Oct 2016
Total Posts : 1
   Posted 10/24/2016 12:53 PM (GMT -6)   
I've taken Phenytoin 100mg twice a day for nearly 20 years and within the last 3 years I've started with neuropathy issues with my feet and within the last year started with my hands. I have quite a bit of pain in my feet and the foot doc has prescribed Gabapentin to reduce the pain. Does this sound reasonable?

Painfully yours,
BH
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