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My Dexa scan came back 50% worse than two years ago. Osteopena is bad. Caused from med.
I'm also on zonisamide and Lacosamide.
When my doctor took me off of phenobarbitol( and I had taken that medicine for over 30 years, she just took it away and replaced it with a new medications. I had no issues or side affects from her doing it that way!
@A MyEpilepsyTeam Member I do not feel addicted to my medications, but I know there would be serious consequences if I were to stop taking the phenobarbital suddenly. Phenobarbital is classified as a barbiturate. Phenobarbital is also used when withdrawing from benzodiazepines and other medications. It is also used as a sedative and hypnotic. It was discovered in 1912. Unfortunately, it is very addictive.
@A MyEpilepsyTeam Member
I heard the addiction comparison from my doctor, and it really is the truth. I know it is strange to hear "you are addicted" from your doctor, but my brain is truly addicted. Mentally, I could stop taking the medication tomorrow, but after a couple of days, I would be in status because my brain could not do without it. My doctor said my brain is basically pickled in phenobarbital, and he is right.
Our bodies will build up a tolerance to certain drugs, basically meaning that over time, we may need progressively higher doses of the same drug to achieve the same effect.
I had been on Dilantin and Mebaral (phenobarb derivative) for close to 20 years. Once a neurologist pulled me off the phenobarb so fast that it caused seizures. It's better to wean iff the drug very slowly. Another time was ar an epilepsy center, when I was being hospitalized for preoperative telemetry, the team withdrew me from phenobarb abruptly. (They substituted Tegretol for the phenobarb). That withdrawal accomplished it's purpose (inducing seizures) admirably. This demonstrates the danger of pulling oneself off the drug too fast. Be patient as you wean yourself from this. I had been so excited at the thought of having the neurosurgery that they had to remind me that patients are called that because we need to learn patience. While that might not be entirely accurate, I got the picture.
@A MyEpilepsyTeam Member There is a issue that can happen where your body just can't tapper off the med. The best way to explain it is your body is addicted. Its not you. I've heard of this happening with people trying to come off Tegretol. In the end the best compromise was to put the med they are trying to get rid of down to 5-10mg. That way all its doing is keeping its own metabolism going and that's basically it. It won't have much effect. The only good part is you won't get sick.
Tbh I'm surprised the dr would flat out say "you can become addicted" This is wrong. There is another word for it but i'm not sure what it is. The way its always explained by drs you would think "well why don't they just say what the dr told you", but they don't they have a much more complex way of explaining it.
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