My Personal N=1
- Thread starter AlohaBird
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Tegretol was the first drug they ever tried on me back when my seizures started when I was 22.
It felt like the worst hangover you have ever had, like the the morning after doing a stupid amount of tequila shots. But it was like that All. The. Time. I felt sick to my stomach, dizzy, sleepy, unable to think straight, headaches. No fun at all. Not only was I feeling like warmed over crap, it did not do anything to stop the seizures.
I have heard that for some people Tegretol works great with minimal side effects. Then there are some where the body chemistry is just incompatible. That was me.
My neuro at the time wouldn't listen to my concerns and threatened to have my DL pulled if I didn't shut up and take my pills as instructed. This is where I learned a certain distrust for conventional medical "wisdom".
Another side effect of Tegretol is that it makes BC pills less effective. That would have been nice to know.
It also makes it more likely that you will lose the baby if you get pregnant. I now know that this is what happened to me.
As if senior year at college weren't stressful enough, add to it not being able to sleep and feeling like a bus hit me plus the hormonal roller coaster of getting pregnant and then losing it. Is it any wonder my seizures got worse instead of better?
ETA: Tegretol now comes with a warning on the package insert about "suicidal ideation" but nobody said word one to me about this. I am not the kind of person who would ever even think about killing myself much less do it. It's not in my nature. But during that dark Tegretol haze, I almost did kill myself one night. I really didn't see the point in going on.
It felt like the worst hangover you have ever had, like the the morning after doing a stupid amount of tequila shots. But it was like that All. The. Time. I felt sick to my stomach, dizzy, sleepy, unable to think straight, headaches. No fun at all. Not only was I feeling like warmed over crap, it did not do anything to stop the seizures.
I have heard that for some people Tegretol works great with minimal side effects. Then there are some where the body chemistry is just incompatible. That was me.
My neuro at the time wouldn't listen to my concerns and threatened to have my DL pulled if I didn't shut up and take my pills as instructed. This is where I learned a certain distrust for conventional medical "wisdom".
Another side effect of Tegretol is that it makes BC pills less effective. That would have been nice to know.
It also makes it more likely that you will lose the baby if you get pregnant. I now know that this is what happened to me.As if senior year at college weren't stressful enough, add to it not being able to sleep and feeling like a bus hit me plus the hormonal roller coaster of getting pregnant and then losing it. Is it any wonder my seizures got worse instead of better?
ETA: Tegretol now comes with a warning on the package insert about "suicidal ideation" but nobody said word one to me about this. I am not the kind of person who would ever even think about killing myself much less do it. It's not in my nature. But during that dark Tegretol haze, I almost did kill myself one night. I really didn't see the point in going on.
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Hi AB
I know 2/1 was the day you were going to start weening off your second med. I hope it continues to go well.
A while back, my nieces doctor increased the dosage of her Vimpat because the frequency of her seizures had increased,but this caused her eyes to roll,it also caused some dizziness and loss of balance. After her seizures were back under control, my sister reduced the dosage and bingo, no increase in seizures and all the side effects were gone. You are so right, sometimes we must listen to our bodies and adjust our game plan. (My sister initiated the decrease in dosage, and then we continued under the doctors guidance).
We received the Holdens Hope on Friday and have used it now for 3 days. I guess it's still to early to to comment on results but I'll keep everyone updated after some time. It has now been 6.5 weeks that my niece has not had a seizure(4-6 weeks is normal). If it continues this way for another while, we have to conclude that the HH is working. We figure 10-12 weeks would be a welcome surprise. We are hoping!!
To Alberta: First of all I'd like to welcome you to the forum, and thank you for the kind words. As I've mentioned before, we're here because we are looking for input,info and opinions which will help us find alternatives to everything that is not working for us at the moment. Hopefully someone who has had your same experiences can share their success stories so that you can adjust your game plan. All the best and keep us posted.
Gene
I know 2/1 was the day you were going to start weening off your second med. I hope it continues to go well.
A while back, my nieces doctor increased the dosage of her Vimpat because the frequency of her seizures had increased,but this caused her eyes to roll,it also caused some dizziness and loss of balance. After her seizures were back under control, my sister reduced the dosage and bingo, no increase in seizures and all the side effects were gone. You are so right, sometimes we must listen to our bodies and adjust our game plan. (My sister initiated the decrease in dosage, and then we continued under the doctors guidance).
We received the Holdens Hope on Friday and have used it now for 3 days. I guess it's still to early to to comment on results but I'll keep everyone updated after some time. It has now been 6.5 weeks that my niece has not had a seizure(4-6 weeks is normal). If it continues this way for another while, we have to conclude that the HH is working. We figure 10-12 weeks would be a welcome surprise. We are hoping!!
To Alberta: First of all I'd like to welcome you to the forum, and thank you for the kind words. As I've mentioned before, we're here because we are looking for input,info and opinions which will help us find alternatives to everything that is not working for us at the moment. Hopefully someone who has had your same experiences can share their success stories so that you can adjust your game plan. All the best and keep us posted.
Gene
Hunter Dave
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Hello AlohaBird , how have you been ? I was happy when I read about Holden's Hope . I would give almost anything to get rid of the side effects of my Medicine . I don't have forever either . I just wish they would factor in quality of life along with seizure control when they are creating these meds .
Thank you. Yes, it sucked.That must have been a really tough time to go through.
That's awesome. I hope it keeps working.
Indeed.
Hmm. It is not exactly tasty straight out of the jar. But it could be mixed with other things such as a smoothie to disguise the taste. The only way I can describe the taste is "herbal" in a strong way. It probably would be a tasty addition to a bowl of soup or other cooking where the flavor was more diffused, like little parsley or cilantro is good in cooking but munching on a bunch of it straight would be rather intense particularly for a kid.
For us adults, we just realize that it is medicine and is not meant to be delicious and we suck it up and take our medicine.
How old is your GS?
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Thanks, Gene. In the spirit of full scientific accuracy, I need to report that I learned a lesson last night. Note to self: Just because you are feeling great and the medication taper is going so well, that is no excuse to toss all the things you know about diet out the window and rely on the cannabis to "pick up the slack".
I was on a date yesterday at the beach when who should we run into but a bunch of my date's family having a beach BBQ (this is a small island and he has a lot of family so running into some is not uncommon.) Anyway, they were being really nice and I didn't want to be a jerk by turning down their hospitality so I indulged a bit.Next thing I know I have had about 3/4 of a bottle of wine and some local delicacy meats that tasted yummy but probably had a lot of soy, sugar and possibly MSG in the BBQ sauces.
In the wee hours this morning I had a minor seizure. Urg. It wasn't as intense as the ones I used to have years ago. I managed not to munch my tongue somehow so that is a plus. I just feel a bit sluggish today.
Bottom line, the cannabis products are great and they really do help but taking them does not mean you can eat drink and be merry in excess without paying the piper.
I think I am going to put off starting on the Phenobarbitol taper for a little while until I feel solid again.
Reality check I guess.
Thanks, Nak. Yes it was a small one without the lasting brain fog that some of the more intense ones can bring. I'm feeling back to normal now.
I think I'll wait til mid month to tackle the phenobarbitol.
Yes, the dates are fun. He is a bit older than I am and has had nine kids who are now all grown up with grandkids producing great grandkids. Everywhere you go on this island, you are going to run into someone who is related to him either by blood or marriage. He is "Popo" or "gramps" to a whole clan.
I do really well at "being good" about my diet and such when I'm by myself but it is harder to say "no" in social situations where you are trying to fit in and be accepted. I think his kids were trying to get me drunk and see if they could get any info out of me about what "Popo" has been up to.
I think I'll wait til mid month to tackle the phenobarbitol.
Yes, the dates are fun. He is a bit older than I am and has had nine kids who are now all grown up with grandkids producing great grandkids. Everywhere you go on this island, you are going to run into someone who is related to him either by blood or marriage. He is "Popo" or "gramps" to a whole clan.
I do really well at "being good" about my diet and such when I'm by myself but it is harder to say "no" in social situations where you are trying to fit in and be accepted. I think his kids were trying to get me drunk and see if they could get any info out of me about what "Popo" has been up to.
MAB
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I'm sorry to hear about your seizure. Hopeful it is just related to your day/night of eating and drinking poorly. I hope it's the last one for you.
I hate to admit to drinking diet pop but once I cut it out completely my seizures have become less frequent and not as severe, unless I am exposed to strong odors.
I might try Holden's Hope it for myself, especially if it helps with relaxation.
My GS is almost 6 but it's obvious from what you said, he won't get near it. His entire diet consists of homemade organic, gluten free chicken nuggets, one brand of apple juice and junk (cookies, chips, etc).
It's not unusual, it's actually pretty typical that people with autism are very picky eaters with a limited diet.
It's an ordeal just to get his prescription meds into him.
Me too. I think it is. I mean I don't have any seizures for ages and then the one time I overdo the booze and junk food, bam!
Yeah, you would probably have to do some creative cooking to get it into him.
Thank you. I'm having fun. He's someone I've been friends with for a long time. Just adding another dimension to the friendship. He's the one who took care of my house and dog for me when I had the week long VEEG in Honolulu. You can leave houses unlocked around here with no fear of burglary but I don't leave my dog with just anyone.Sorry to hear about your seizure, but echoing those above, I hope it was due to diet/alcohol so that it is controllable. Also, congrats on your date!
I think what my recent slip up is reminding me that there are many factors that go into triggering seizures so there needs to be a concerted effort of many factors to control them.
I was feeling so good from using the cannabis paste that I let the other factors slip.
We can't rely on any one thing to be the cure all. That goes for pharmaceutical as well as other treatments. There is a groundwork of seizure threshold building, the same things that go into general health building. Good sleep, good food, none of the bad stuff. This lays the foundations and I believe it could help a lot of people reduce their dependence on meds even if they didn't choose to or were not able to go med free right away.
If, as we saw in that video from Stanford, (where is Zoe when you need a reference?) the brain can get "in the habit" of seizing by the process known as "kindling". Well I believe it can also get in the habit of NOT seizing by consistent care over time. It's not a "wonder drug" or a "wonder herb" that makes it go away like magic. It is the careful consistent application of basic health and lifestyle principles over a lifetime that matter.
Sometimes a gentle "slap upside the head" from Mother Nature is needed to drive the point home.
I was feeling so good from using the cannabis paste that I let the other factors slip.
We can't rely on any one thing to be the cure all. That goes for pharmaceutical as well as other treatments. There is a groundwork of seizure threshold building, the same things that go into general health building. Good sleep, good food, none of the bad stuff. This lays the foundations and I believe it could help a lot of people reduce their dependence on meds even if they didn't choose to or were not able to go med free right away.
If, as we saw in that video from Stanford, (where is Zoe when you need a reference?) the brain can get "in the habit" of seizing by the process known as "kindling". Well I believe it can also get in the habit of NOT seizing by consistent care over time. It's not a "wonder drug" or a "wonder herb" that makes it go away like magic. It is the careful consistent application of basic health and lifestyle principles over a lifetime that matter.
Sometimes a gentle "slap upside the head" from Mother Nature is needed to drive the point home.
(It's not a "wonder drug" or a "wonder herb" that makes it go away like magic. It is the careful consistent application of basic health and lifestyle principles over a lifetime that matter.)
Hi Again, That seizure if frustrating when it seemed like you were working on an excellent alternative, or perhaps EVEN a wonder drug. Thank you so much for doing this. You are helping so many people by setting this groundwork.
Hi Again, That seizure if frustrating when it seemed like you were working on an excellent alternative, or perhaps EVEN a wonder drug. Thank you so much for doing this. You are helping so many people by setting this groundwork.
I truly believe the cannabis is making all the difference between this and the other times I've tried to taper off the meds.
So I'm not saying it quit working, just that basic healthy choices can't get left by the wayside because a new herb has come along.
I really think this is what a lot of people do regarding their pharmaceutical meds too. They figure I'm on the pills so I can do/eat anything I want and then complain that the pills don't work all the time.
Weather you chose to go with pharma or alternative treatments, you still have to do the basic foundational work for good health. Everybody really should do this but those of us with a less than optimal seizure threshold have to be more vigilant about it.
I think I need to have a Talk with the guy I'm dating. Preferably some time when we are not out in public. Last night out at a music event he kept ordering me a drinks when I was in the ladies room. It's not his fault. I need to be more clear about it and set some boundaries.
So I ended up with two tiny glasses of wine over the course of a whole evening and managed to not have any seizures but I didn't sleep well. I kept waking up every couple of hours.
I know better.
So I'm not saying it quit working, just that basic healthy choices can't get left by the wayside because a new herb has come along.
I really think this is what a lot of people do regarding their pharmaceutical meds too. They figure I'm on the pills so I can do/eat anything I want and then complain that the pills don't work all the time.
Weather you chose to go with pharma or alternative treatments, you still have to do the basic foundational work for good health. Everybody really should do this but those of us with a less than optimal seizure threshold have to be more vigilant about it.
I think I need to have a Talk with the guy I'm dating. Preferably some time when we are not out in public. Last night out at a music event he kept ordering me a drinks when I was in the ladies room. It's not his fault. I need to be more clear about it and set some boundaries.
So I ended up with two tiny glasses of wine over the course of a whole evening and managed to not have any seizures but I didn't sleep well. I kept waking up every couple of hours.
I know better.
Dear Aloha friend,
I have missed you. Seems like when all is well I don't spend a lot of time on here. However, I have had a set back and here I am.
I am not sure if I have told you this but last year after my fall from grace that ended up as a subdural hematoma and a craniotomy two weeks later, I have been instructed to wear a bicycle helmet when I am vertical. Lots of fun as a 57 year old single person. Anyway, 95% of the time, I wear it but sadly last Friday, after 3 weeks of intensive treatment with cbd as well as my cocktail of meds, I had a fall which resulted in a hospital visit, staples.....
Interestingly, I didn't know about the connection between Seizure Thresholds and UTI's.....
It is not the first time it has happened but last time, I had no symptoms of UTI. On Monday, I started taking Macrobid and now it is mid Wednesday and I am still in pain.I have also been having many a seizure.
I am almost glad that there was "something" as otherwise I would have decided the Cannibis had stopped doing its job...
Apparently, any weakness of the immune system can lower threshold. When I fell in Florida I was greeted with a nasty cold, within hours.
So, this is just a set back, and I was very interested to see how many references on this site there are to this.
I am sorry about your adventure in seizure world. I hope it has not happened again.
Nice that you are dating, I hope all is well.
Glad I got a puppy!!!!
I have missed you. Seems like when all is well I don't spend a lot of time on here. However, I have had a set back and here I am.
I am not sure if I have told you this but last year after my fall from grace that ended up as a subdural hematoma and a craniotomy two weeks later, I have been instructed to wear a bicycle helmet when I am vertical. Lots of fun as a 57 year old single person. Anyway, 95% of the time, I wear it but sadly last Friday, after 3 weeks of intensive treatment with cbd as well as my cocktail of meds, I had a fall which resulted in a hospital visit, staples.....
Interestingly, I didn't know about the connection between Seizure Thresholds and UTI's.....
It is not the first time it has happened but last time, I had no symptoms of UTI. On Monday, I started taking Macrobid and now it is mid Wednesday and I am still in pain.I have also been having many a seizure.
I am almost glad that there was "something" as otherwise I would have decided the Cannibis had stopped doing its job...
Apparently, any weakness of the immune system can lower threshold. When I fell in Florida I was greeted with a nasty cold, within hours.
So, this is just a set back, and I was very interested to see how many references on this site there are to this.
I am sorry about your adventure in seizure world. I hope it has not happened again.
Nice that you are dating, I hope all is well.
Glad I got a puppy!!!!
We want puppy pictures!
Yes, any kind of infection can bring your threshold down. I have had UTIs many times over the years and those are no fun at all. There is a wonderful product I found on Amazon called D- Mannose. It comes in a powder and in capsules. I swear it works better and faster than antibiotics without all the gut dis-biosis and secondary yeast infections and such. You also can take it at a maintenance dose to keep UTIs from being a recurring issue.
I'm doing fine as long as I stay away from the alcohol and get to sleep at a reasonable hour. I think I'm going to start the Phenobarbitol cutback mid-month so that would be starting next week.
Feel better soon.
Yes, any kind of infection can bring your threshold down. I have had UTIs many times over the years and those are no fun at all. There is a wonderful product I found on Amazon called D- Mannose. It comes in a powder and in capsules. I swear it works better and faster than antibiotics without all the gut dis-biosis and secondary yeast infections and such. You also can take it at a maintenance dose to keep UTIs from being a recurring issue.
I'm doing fine as long as I stay away from the alcohol and get to sleep at a reasonable hour. I think I'm going to start the Phenobarbitol cutback mid-month so that would be starting next week.
Feel better soon.
Tegretol was the first drug they ever tried on me back when my seizures started when I was 22.
It felt like the worst hangover you have ever had, like the the morning after doing a stupid amount of tequila shots. But it was like that All. The. Time. I felt sick to my stomach, dizzy, sleepy, unable to think straight, headaches. No fun at all. Not only was I feeling like warmed over crap, it did not do anything to stop the seizures.
I have heard that for some people Tegretol works great with minimal side effects. Then there are some where the body chemistry is just incompatible. That was me.
My neuro at the time wouldn't listen to my concerns and threatened to have my DL pulled if I didn't shut up and take my pills as instructed. This is where I learned a certain distrust for conventional medical "wisdom".
Another side effect of Tegretol is that it makes BC pills less effective. That would have been nice to know.
As if senior year at college weren't stressful enough, add to it not being able to sleep and feeling like a bus hit me plus the hormonal roller coaster of getting pregnant and then losing it. Is it any wonder my seizures got worse instead of better?
ETA: Tegretol now comes with a warning on the package insert about "suicidal ideation" but nobody said word one to me about this. I am not the kind of person who would ever even think about killing myself much less do it. It's not in my nature. But during that dark Tegretol haze, I almost did kill myself one night. I really didn't see the point in going on.
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
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! Also I've been wondering if it's possible to try splitting the capsules on my Carbamazepine XR, I've been researching the idea a bit and found conflicting information. 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
Ruth