I asked to part ways with my Neuro

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vapour

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Hi.

First off let me explain. I have/well had an awesome Neuro, she is excellent and has helped me as far as I wanted to be helped.

Lately as some may know by some of my recent posts I am extremly miserable being on medications. I have asked to come off and I feel controlled and persuaded to stay on. Tonight I emailed and did explain she is a great Neurologist, but Im very confused right now with pharmasutical companies....I believe the various lumps that came back negative in testing (though found another one lately) have been from the medications...

today all day I felt achy...sweaty, flushy... got this lump... stuff going on with my body I put down all to meds and side effects....this plus meds is just devastating me more than seizures ever did.

So yeah on 2 occassions I was in status.. in the ER.. but thats just 2 occassions, I think I can cope with partial seizures if they become daily again and just require 2 hospitalizations for a night a year.... seizures dont kill you, its not going to get worse, the only grand-mal seizures I had were as a child from high fever.

Id rather just cope with partial seizures rather than .. meds + breakthroughs sometimes.

Anyway, so I actually feel very relieved. My psychiatrist will know how to wean me off these meds, I am going to ask him tomorrow. I am sure he will realize its either help me wean off... or I do it alone cold turkey.. or try myself weaning off.

I guess I wont be doing hte TNS study becuase of this.. plus I was supposed to get the Neuro to fax stuff out before this friday, and I guess I wont be doing that now. PLUS I would have to do the TNS treatment 14 hours a day, and I am way ready to throw epilepsy in my trash can right now.

I am finally going to be "let be" Let my body run its own course, on its own, naturally. If the worst ever comes to the worst in any given situation.. you die right ? Im ready anyway

Hey and while Im on this post ... does anyone know if DMT is realeased in your brain during a seizure ? I know that before you die its released and thast why people have spiritual experiences.. so I was wondering if it happened during a seizure.

They have also manufactured DMT and its the most powerful psychdellic drug a person can take in the world... and it only lasts for about 15 minutes....
 
I think that all of us, regardless of what medications we're on, have to come to a point to decide if the side effects/dependency are worth the quality of life we have. For me, I completely understand your decision. I even asked my wife the other day if she wanted to come off her meds all together because Keppra has been making her depression and anxiety worse. She wants to keep on them for a while and see how things go, but I'd support her with either decision she wants.

I hope things get better for you. I know you've been having a rough go lately. I'll say a prayer for you.
 
Hi Vapour, it's a tough decision to make. I hope it's the right one for you. Regardless if you see a neurologist again, I hope you go to a regular doctor to see about the other symptoms you are experiencing.

In terms of weaning off the meds, I recommend that you find out what your psychiatrist says, but then taper even more slowly and in smaller increments. The risks of going too slow are minimal compared to the risks of going too fast.

Best,
Nakamova
 
resignation

Hey Vapour:

It's your life, and you are the one putting up with what ever your body throws at you. As the rest of us are. I think you are brave, and the meds. side effects do suck. Whatever happens happens, it is your decision to make. Gods speed!

Stay in touch

gigi
 
I agree with Nakamova, there are few consequences to weaning off your meds too slow as opposed to doing it too fast.

Also be aware that our seizures do change. I'd never had a tonic/clonic seizure until I tried to wean myself off of my meds when I was 18 years old. It was the last thing I expected. It doesn't mean you will have 1 or more T/C seizures but I think it's best to be aware of the possibility & to at least have an idea of what you'd do should that happen.

Good luck & like Gigi said, keep us updated.
 
vapour said:
seizures dont kill you, its not going to get worse, the only grand-mal seizures I had were as a child from high fever.
....
Click to expand...

actually, seizures can kill you, and it can get worse. research SUDEP
 
Yes, but that is rare.
If the side effects are unacceptable, and you would rather have the occasional seizure, then more power to you. It is our choice of action. But as suggested, do go extremely slow with tapering the meds. We went far slower than the doctor recommended. Trust how you are feeling. I would also like to suggest that you look at the alternative therapies recommended here at CWE and find something that you can put in place. Of course I can't say enough about the need for excellent nutrition. Do research and find what works for you. Don't give up on improving the quality of your life.
 
Hi Vapour,

You are so very brave. I understand how you are feeling. I quit taking anti-seizure meds for two years (not by choice). I had a neuro retire on me and not tell me. He decided not to tell any of his patients and I went without a neuro for about 2 years until I found my current one. My seizures changed in those two years and got worse but that was just me and I don't want to scare you or anything. I think this was just the nature of my seizures and not due to me being on any meds.

After my neuro retired I decided to see my general practitioner (keep in mind I was not diagonosed with E or seizures at this time) and he wanted me to stop all meds that the neuro had me on including all anti-seizure meds cold turkey. I told him no to the cold turkey thing. I told him that my neuro told me to never ever quit taking anti-seizure drugs cold turkey and to taper up and to taper down very slowly. In other words please taper down slowly no matter what other doctors tell you.

I admire your courage and understand your decision and I wish you the best and hope that you find strength and can overcome what your brain throws at you sometimes. I know that the side effects are hard to deal with as much as the seizures sometimes. Sometimes the side effects can be worse than the darn seizures so I can understand. Good luck, Vapour. I do wish you well.

tam bam
 
Hi vapour!

As has been mentioned above, epilepsy CAN change. So please make sure that if you choose to wean yourself off, that you do it slowly. Seizures can kill. And if you quit too quickly, it can trigger seizures. So please, be very careful.
 
vapour said:
Hi.
. got this lump...

So yeah on 2 occassions I was in status.. in the ER.. but thats just 2 occassions,.
Click to expand...

Hi vapour, I have lumps underneath my skin. My neurologist is sending me to a dermatologist about it. It might be something else than the medicines.

I have been in status 2 times, as well. My husband was told I was going to die. You can die from status epilepticus.

I also had Steven Johnson Syndrome, my parents were told I was going to die.

Getting off of your medicines to fast can cause status. Be sure and have your neurologist wean you off. I care for you and hope you get better.
 
Hi Vapour

I feel so sad that you are having to go through all this. I wish you well with whatever you decide is best for yourself. It is your life and you only, know how you are feeling right now. I agree with everyone else here who has said to taper off slowly.

take care (((hugs)))
 
Thanks for the replies. I spoke with the other doc today about how to come off these meds, but he still insisted I be on them. I did not want to say "im gonna do it myself if you dont tell m" becuase I dont want to back anyone into a corner or push anyone into something....

So at this point im doing it alone. I am going to go very slow...will be hard because I cant wait to get off them lol....

I so far today just cut things in half, and will do that for a few days.

I have not told hte doc Im doing it alone. Once its done, and they can see how well I am doing.. I will tell them... it will probably shock them because they probably expect me to fall apart and thats not happening....oh well.

Hope everyone had a good day. I just finished up at work and off to take the bus home.

Robin I have realy been eating well....I keep a very basic bland diet that doesnt change much....

So off to the bus stop I go .. brrr......forgot my sweater.
 
Hi Vapour --

Go even slower! Try to stay at the half-dose for two weeks, if not longer before going down another step. I know it seems slow, but it's much better for your system.
 
Hey Ruth. THe lumps I have are in my glands. I found 2 small squishy ones that move months and months ago. When I went to get checked out the nurse practitioner found one in my groin too....or maybe 2 ... all tests came back negative.

I also am getting very lumpy breasts.....and extremly painful preiods.....I put all this down to medication.

I looked it up online and saw swollen lymph nodes as a side effect all all seizure meds....yet the doctors have denied this.

So anyway. Im now taking a daily vitamin formula for women.. to help with such things.....been on it a few days so far.

I hope you find out what your lumps are.
 
swollen glands are also a symptom of lymphoma, where your body can't drain the fluid, so it builds up.

als o it is a symptom of melanoma, where a mole is to blame for the reaction. if you have any moles, get them checked.
 
I am going to be tested for melanoma in January by a dermatologist. He can do biopisies of my skin. He is going to find out if it is one of my medications or cancer. My neurologist referred me.

You should see a dermatologist. One that can to tissue biopies. Not all dermatologist's have the license to do that. I have lumps under my skin. It can be either cancer or Steven's Johnoson Syndrome.
 
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