My Personal N=1

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One website I found with info on the drug said the capsules can be opened and sprinkled into soft food, but the very next sentence said the capsules are not meant to be opened and should be swallowed whole. Confusing much???

Ruth -- It may depend on which variety of the extended release Tegretol you are taking. TegretolXR is not meant to be opened, but Carbatrol can be:
The Tegretol-XR® form works on the principal of a tablet which does not dissolve but rather allows water to enter through tiny pores and force out the medication. This slows the absorption of the medication and allows for twice a day dosing.

The Carbatrol® works by using a series of three different beads that dissolve at different rates and therefore spread out absorption and again allows twice daily dosing. In the Carbatrol® method, the capsules can be opened and the beads can be taken over food or with a spoon for those who cannot swallow.
(From http://www.bellaireneurology.com/seizure/epil_trt_tegretol.html)

If you're not sure, might be a good idea to consult with your neuro and/or your pharmacist.
 
After a couple months I started feeling a lot better--and then discovered I had forgotten to fill my Rx that month! After that I thought, they're just making things worse, so I never restarted them. Frankly I think if I could just get the Tegretol dose lowered things would be a lot better, At this point I've been deliberately missing doses a couple times/week, if I take them as prescribed for more than a couple weeks at a time I actually have more seizures. Or it feels like the beginning of a seizure, anyway. I started seeing a Chiropractor a while back, he said after a few treatments I might be able to start reducing my meds, but my neuro won't even consider it and even said I "shouldn't be letting a Natural Health Doctor tell me what to do with my meds"!I never heard of the possibility of having miscarriages on Tegretol, but I have 3 kids in their 20s and they all have developmental disabilities (DS20 ADHD/Aspergers, DD22 and DD24 Intellectual Disability). Never been actually suicidal but occasionally I get this weird scenario in my head of being in the hospital after being hurt in an accident or something.

Beautiful dog AB! My therapist said she might get me an Emotional Support Dog at some point (my seizures aren't frequent enough to warrant an epilepsy dog), unfortunately where I'm living they don't allow pets and an ESD is considered a "Therapy Dog" rather than a "Service Dog" and according to my therapist isn't covered under the ADA. Hopefully when my lease is up in November we can find a place that allows pets and get one.

Ruth

Also I'd love to try Holden's Hope, I've been reading on here for a while and it sounds really interesting, unfortunately it's a bit out of my price range at the moment!


Ruth

Thanks for the info on pill splitting, Nak.

Yeah the Holden's Hope stuff is a bit pricy.
The other thing I've been trying is just your "garden variety" MJ. That seems to be working brilliantly for dropping me off into a sound night's sleep. It seems like I have to remind myself that the stuff out there these days is a lot more potent than the skunk-weed we used to smoke "back in the day". Just a couple of puffs and I'm good.

Your therapist is right about the ADA covering service dogs but not therapy dogs. However the distinction between the two is that a service dog has to actually DO something for you (as opposed to just being a furry comforting presence.) There are psychological issues that do qualify for service dogs such as PTSD and panic/anxiety disorders where a dog can sense a panic attack coming on and pull their human back from it.

About the meds. Your neuro doesn't get to decide if s/he will or won't "consider" anything. It is your health, your body and therefor your decision.

I am so sorry about the challenges your kids have had to face. Tegretol does come with a serious warning these days about not taking it while pregnant or planning to get that way. I don't know if maybe that is something they have figured out over the years and those of us who took it back then were being used as guinea pigs.

Frankly, with that kind of poison as the best that allopathic medicine can do, I think it's great that you are exploring alternative therapies.
 
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Well, I was due to start my Phenobarbitol cutback in mid February but I decided to hold off for a little while. I just didn't feel quite ready.

My eating habits haven't been as consistent as I would like lately and I am also coming up on a two week vacation to my neighbor island of Kauai in a little over a week. So, I figure I will wait until I get back and settled in to make the next cut.

It feels like my body is getting comfortable with this level of medication. I feel much better without the Valproic Acid in my system but I was taking it for a lot of years. There is probably some internal "housekeeping" that needs to be done.
 
The human body is pretty amazing in the way it constantly adjusts and re-adjusts, but giving it a little extra time to do so is almost always a good idea — especially if that's your "gut feeling" right now.

I hope you have a great time on Kauai! Let me know what to bring when I show up. :)
 
Yeah. It is a "gut feeling" and I think those should always trump some arbitrary time table.

Just bring your flip flops and sunglasses. :)

I'm going to be spending two weeks on Kauai doing some exploring and canyon hiking (Wimea Canyon is known as the Grand Canyon of Hawaii) so I am really looking forward to that. Hawaiian Airlines has some really good package deals where you get the flight, hotel and a rental car for less than it would cost to book just the hotel on your own.

My canine companion is of course going with me.
 
AlohaBird, what do you think about Chaga? It's found in the N/E part of the USA, and other parts of the world. I knew a women would lived in Florida and she used to buy it and it was very expensive. I used to send her chunks of it monthly. I see tons of the stuff on the Birch trees up here in New Hampshire. If it's something you would want to use, I'll send it to you. Google it.
 
Open invitation.....gawd sake don't do it on empty stomach
No, no, not planning on doing the fast until I get back.

AlohaBird, what do you think about Chaga? It's found in the N/E part of the USA, and other parts of the world. I knew a women would lived in Florida and she used to buy it and it was very expensive. I used to send her chunks of it monthly. I see tons of the stuff on the Birch trees up here in New Hampshire. If it's something you would want to use, I'll send it to you. Google it.
Hmmm. Interesting. https://en.wikipedia.org/wiki/Inonotus_obliquus

I've never tried it but I did run across some mentions of it when researching alternative cancer preventatives/cures.

According to the Wiki article, farm raised chaga is pretty useless but the kind that grows on birch trees is the real deal.

I would love to try that.
 
OMG Deja Vu here. I've been on Tegretol since I was 9 and mostly had the same problems the whole time. I had heard about the BC thing, discussed the idea of getting an IUD w/my primary care doc at one point but wasn't too thrilled about the idea of having a piece of metal & plastic shoved up my cooch of which one of the possible side effects was a perforated uterus. I've been in therapy for depression for a couple years now, my therapist talked me into trying an antidepressant a few months ago. The first one they tried me on, BOOM, after the first dose I ended up in the ER with what they called an "altered mental state". The ER doc said to drop the antidepressant, the psych my therapist had sent me to tried me on something else. After a couple months I started feeling a lot better--and then discovered I had forgotten to fill my Rx that month! After that I thought, they're just making things worse, so I never restarted them. Frankly I think if I could just get the Tegretol dose lowered things would be a lot better, one doc I had increased the dose I was on to compensate for the fact that I sometimes missed doses and my next neuro switched me to the XR version w/o dropping the dose back to "help me remember to take my meds". At this point I've been deliberately missing doses a couple times/week, if I take them as prescribed for more than a couple weeks at a time I actually have more seizures. Or it feels like the beginning of a seizure, anyway. I started seeing a Chiropractor a while back, he said after a few treatments I might be able to start reducing my meds, but my neuro won't even consider it and even said I "shouldn't be letting a Natural Health Doctor tell me what to do with my meds"!I never heard of the possibility of having miscarriages on Tegretol, but I have 3 kids in their 20s and they all have developmental disabilities (DS20 ADHD/Aspergers, DD22 and DD24 Intellectual Disability). Never been actually suicidal but occasionally I get this weird scenario in my head of being in the hospital after being hurt in an accident or something.

Beautiful dog AB! My therapist said she might get me an Emotional Support Dog at some point (my seizures aren't frequent enough to warrant an epilepsy dog), unfortunately where I'm living they don't allow pets and an ESD is considered a "Therapy Dog" rather than a "Service Dog" and according to my therapist isn't covered under the ADA. Hopefully when my lease is up in November we can find a place that allows pets and get one.

Ruth

Don't underestimate Tegretol, I learned the hard way with my girl, (she has Autism with Intellectual disability and Epilepsy) It brought about a regression of frightening negative behaviours and it inteferred with the contraceptive pill effectiveness. Ask any gynaecologist and they should tell you that Tegretol diminishes the effectiveness of the pill.

Wow oh wow......
you have 3 with special needs, I'm blown away.
 
What is the matter with a man getting sorted why the woman having to think of plastic thing stuck up her cooh agony of period pains.why she got shovel the pill down woman with e has enough things to shovel down...I had my husband done as it only fair.Great choose woman shoves iud up cooch gets painfull periods or she shoves something weighing up to 11lbs out
 
Don't underestimate Tegretol, I learned the hard way with my girl, (she has Autism with Intellectual disability and Epilepsy) It brought about a regression of frightening negative behaviours and it inteferred with the contraceptive pill effectiveness. Ask any gynaecologist and they should tell you that Tegretol diminishes the effectiveness of the pill.

Wow oh wow......
you have 3 with special needs, I'm blown away.
It would be nice if the neurologist mentioned this as well. Nobody told me back when I was 22. Personally, I think Tegretol is evil.

Very interesting. Thanks Andrew. How have you been?

That was a small sized study but had interesting results nonetheless. When something as simple and side effect free as some supplementary B6 can help that much in children with that severe developmental disabilities, I don't see the downside to everyone with epilepsy taking some.
 
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What is the matter with a man getting sorted why the woman having to think of plastic thing stuck up her cooh agony of period pains.why she got shovel the pill down woman with e has enough things to shovel down...I had my husband done as it only fair.Great choose woman shoves iud up cooch gets painfull periods or she shoves something weighing up to 11lbs out
I am so glad I'm post menopausal and don't have to deal with this stuff any more.
 
Me too.


You know, I think I have realized why my body is telling me to take a break between getting off the Valproic Acid and starting the cutback on the Phenobarbitol. The Pheno is potentiated or made stronger by the VpA. So, from my body's point of view, cutting the VpA out is the same thing as doing a cutback on the Pheno. I should give the old bod a chance to adjust to this level before pushing it further.
 
Hmmm. Interesting. https://en.wikipedia.org/wiki/Inonotus_obliquus

I've never tried it but I did run across some mentions of it when researching alternative cancer preventatives/cures.

According to the Wiki article, farm raised chaga is pretty useless but the kind that grows on birch trees is the real deal.

I would love to try that.
If you or anyone else can't find Chaga in your forests, there's plenty where I live. I'd be very happy to send you some. I only ask that you pay for the delivery, plus check with your doctor to see if they say it's OK for you to use. Here's a picture of a nice chunk I saw yesterday while bushwhacking. This is the real stuff....right off a Birch tree.

Chaga%202-26-16_zps4gjenhpp.jpg
 
Interesting. The climate in Hawaii is not exactly friendly to birch trees.

I will do a bit more research and see what the doc has to say.

Thanks for the offer, Joey.
 
Hi again Aloha Bird. Just a hint about the phenobarbital. Watch out for the withdrawal symptoms. I have just come off of Frisium and the withdrawal is not good. Evidently, phenobarbital has a similar withdrawal. It took me 8 weeks to stop the Frisium and I was not given an option about taking another medication to replace. It is hard to tell which side effects are lamotrigine and which are caused by Frisium withdrawal. At least when you stop you will know everything is withdrawal. Hope it works for you when you stop. Cheers, Alberta
 
Thanks for that Alberta.

Yes, I am going to give it a while to get evened out with only the Phenobarbitiol in the system and no valproic acid. Then at least if the withdrawal symptoms start I will know what is causing it.

Taking it slowly is also really good advice. There is always a temptation to toss the med bottles and run but that is not sensible.
 
My sincere thanks to everyone who has participated on this thread with me and helped me along my N=1 journey.

I am going to be taking a CWE break for a while and perhaps permanently. If you would like to know why I would be happy to PM about it but, if I write it here, the Thought Police will be around to censor anything I say. :)

It's been fun. I wish everyone well on their healing journeys.

Robin
 
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