Some unrelated Qs (Driving, diet, pregnancy, homeopathy)

[flats88]

Hi everyone!

I went for a long hike today and had some questions swimming in my mind.

I have generalized absence seizures and the rare grand mal. I was diagnosed at 12 and so have never driven. I am 27 now, and through college and for some years after, living in Boston suited me well because the public transportation/walkability was amazing. I'm going through a life transition now where I just don't know where to live. I left Boston a couple years ago to pursue art and travel. Plus, I just couldn't afford it anymore. I have plans through the summer but after that I'm stuck. Where do you live? My priorities are affordability, no need for driving clearly, and both vibrant arts and queer scenes. I am a dual Canadian/US citizen so that expands my options..

Unrelated question 2:
I'm in the place where... Though I am not ready for children for some time, I am starting to think I should be 'thinking ahead'. My neuros over the years have never addressed this with me much, perhaps even less so because they all know I'm a lesbian. Anyway. What things do you/did you do when you were in this mind frame? Recommended reading?

Unrelated question 3:
I know virtually nothing about the whole gluten free thing except for random pamphlets I've seen at my neurologist's office. I've asked about it before (I've asked different neuros over the years) and they've all said that it more or less wouldn't make a difference in my case. I have primarily absence seizures and they aren't hugely disruptive in my day to day life in any way (with medication). Thoughts? Worth trying? A pharmacist randomly chatted me up today and raved about how her sister with E is doing so well in many aspects since going gluten free.

Lastly-
Who among you seek out the help of homeopaths/other natural healers for E? What have your experiences been like?

Thanks.

 

[acshuman]

NOT Driving May Limit Your Ability to Live Anywhere!

flats88,
I have lived with my E for 50 years. I moved to a heavily populated area when I moved from home. The public transportation was great but I just never felt like I fit in that lifestyle. I moved back to the small town area near where I grew up.
I had to make the difficult decision to work at something that I was able to get to without driving. This was doing something that I had never thought I would be doing. but I found out that my choice for a career were very limited if I couldn't drive to get to work but wanted to live on my own. It may take some time to get used to doing this, but you should be able to realize that the availability of careers is limited when you don't drive.

ACsHuman

 

[acshuman]

NOT Driving May Limit Your Ability to Live Anywhere!

flats88,
I have lived with my E for 50 years. I moved to a heavily populated area when I moved from home. The public transportation was great but I just never felt like I fit in that lifestyle. I moved back to the small town area near where I grew up.
I had to make the difficult decision to work at something that I was able to get to without driving. This was doing something that I had never thought I would be doing. but I found out that my choice for a career were very limited if I couldn't drive to get to work but wanted to live on my own. It may take some time to get used to doing this, but you should be able to realize that the availability of careers is limited when you don't drive.

WELCOME to CWE!

ACsHuman

 

[flats88]

I had to make the difficult decision to work at something that I was able to get to without driving. This was doing something that I had never thought I would be doing. but I found out that my choice for a career were very limited if I couldn't drive to get to work but wanted to live on my own. It may take some time to get used to doing this, but you should be able to realize that the availability of careers is limited when you don't drive.

Hello,
Thank you for taking the time to reply. However, I don't really feel as though you answered my question in regards to driving/living. I am probably the opposite of you, as I very much prefer well populated areas over small towns. I also will not be letting my E dictate my career choices anytime soon. I loved Boston and hopefully can afford to live there again someday. At the moment, it's one of the most expensive (top 3?) cities in the U.S. I'm looking for alternatives. I hope that clarifies for others. Thanks.

 

[seagull]

Out curiosity why did you need tell nuro about your sexuality.I don't live in States and be honest I not want to.Is it necessary you live there possible try few countries back packing and use your skills earn a little money.
My son went work in Bombay on alcohol and drug unit which turn out be shed back of the hospital he went to find himself not sure if he did went back another three times.He settled now and so pleased he tried a few countries out NZ Australia India.I make it sound easy but it not hard as you think

 

[ln1]

Hi Flats88 and welcome!

In response to question #3...

I've been gluten free (also dairy free, soy free, and egg free) since I had my first tonic clonic last year. Before that, I had absence seizures that changed to more aggressive seizure types over the years.

To make a long story short kind of short, although celiac disease runs in my family, I have never been officially diagnosed with it. My gastroenterologist wanted to do an upper GI and biopsy to test me, but I had to start eating gluten again. When I did, my seizures increased, I had bad neuropathy on the left side of my body, and regular migraines. I stopped eating gluten-filled foods and these things lessened.

I tested myself with the on/off gluten method several times and the same thing happened. On gluten - seizures, neuropathy, migraines. Off gluten - very few seizures, no neuropathy, sporadic migraines.

Non-seizure related, I noticed without gluten, I no longer had the constant stomach pain I suffered with for 9 years and my periods came back to being regular.

If you do decide to go gluten free, I would suggest talking to your primary doctor just so you both are on the same page as far as considering your overall health, but for me, I have seen positive changes in my health.

Best to you!

 

[masterjen]

Hi flats88,
I do have celiac disease, and while I am by no means an expert I do have first hand experience.
If you have some of the symptoms of celiac disease, I would strongly suggest getting tested for the condition before going gluten free. There are medical conditions one needs to be monitored for if they do have celiac disease, and if you do not have celiac then you won't have to worry about these problems.
Also, you need to be aware that gluten free grains overall are not as healthy as the so-called gluten grains and many of the more processed foods that are gluten free are higher in fat and higher in sugar. If you do not want to be tested for the condition, I strongly urge you to first eat a "clean" diet; ie. avoid processed foods completely (eg. pasta, bread, treats and most cold cereals) and eat a whole foods diet instead, regardless of whether it contains gluten or not. This does mean avoiding cold cereals, but shredded wheat would potentially be fine because it is far less processed than other cereals). Oatmeal is perfect if you like that - not a gluten grain anyway, but can become contaminated by gluten in the factories. Give this a try for a couple of months and if your seizures and/or GI symptoms improve than you will know that gluten is not the issue, but if things do not improve then approach your family doctor to be tested for the condition. Good luck!

 

[Cint]

Hi flats,

I live in the Denver area and there IS public transportation that is expanding every year here in the Denver-Boulder area. It isn't as thorough as Boston's, but it does get me where I need to go. I know about Boston because my son went to law school at BU, so we visited several times. The cost of living here isn't nearly as high as Boston's, either. Denver is growing every year, so there is building and more building.

I've had E for nearly 40 years and had a few accidents so will never drive again. I also have Type 1 Diabetes, so I do follow a low glycemic diet, basically. Both docs I see, my neurologist and endocrinologist, are downtown at the University Hospital, which I can ride the Light Rail to when I need to see them.

I also have two grown, healthy, happy children. My daughter is married and has a career and my son is in southern Colorado with a law firm. I am now living on my own.

As far as Homeopathy, Colorado would be the place, since pot is legal here now. But there are lots of other homeopathic methods to try. I have not tried it nor do I intend to.

And since seagull mentioned backpacking, there are plenty of places to go backpacking and hiking here in Colorado. The mountains are beautiful.

 

[seagull]

I don't think smoking a joint quite same as homophobic treatment...I know many doc think it cobblers.
If taking cannabis I would get medical stuff..I have tried more than once but made so ill ii aura was worse thing I had in my life I not try it again unless under medical advice

 

[Porkette]

Hi flats88,
Just like you I've had absence seizure for 44 yrs. and never been able to drive. You may want to look into finding apartment that they have for both retired and people with disabilities my mom lives in one and there's a bank, grocery store, drug store and a place to go out to eat all within a short walking area and then for transportation there's a bus you can take. They base your rent on your income it's a really nice apartment to stay in and you won't have to worry about repair work only paying for your phone and cable and everyone gets a discount. I live in upstate NY and this is where the retirement homes are along with the apartments for people with disabilities check around in your area I'm sure there are some.
I've been married for almost 30 yrs. and my husband and I wanted to adopt but they wouldn't let us do to my epilepsy which was totally illegal, so now I work with kids in public school every day. Depending on what meds you take can really determine if it's safe to have a child or not along with if the epilepsy is genetic in your family.
You may want to try the ketogenic diet which is for epilepsy the diet is high in fat but low in carbs and starch foods. Also stay away from anything with NutraSweet because that causes more electrical activity in the brain and it can often lead to seizures this is what I found out after drinking diet soda I always ended up having seizures. Cut out the MSG also. Wishing you only the best and May God Bless You!

Sue

 

[Cint]

I don't think smoking a joint quite same as homophobic treatment...I know many doc think it cobblers.

Me either.... Homophobic treatment is this: "prejudiced against homosexual people"

Homeopathic is the practice of medicine that embraces a holistic, natural approach to the treatment of the sick. Homeopathy is holistic because it treats the person as a whole, rather than focusing on a diseased part or a labeled sickness.

If taking cannabis I would get medical stuff..I have tried more than once but made so ill ii aura was worse thing I had in my life I not try it again unless under medical advice

If I were to take cannabis, I would definitely go thru my dr. It is now being tried here in the U.S. for E.

http://www.epilepsy.com/learn/treat...ent-approaches/medical-marijuana-and-epilepsy

Does cannabis help seizures?

Evidence from laboratory studies, anecdotal reports, and small clinical studies from a number of years ago suggests that cannabidiol, a non-psychoactive compound of cannabis, could potentially be helpful in controlling seizures. However, there are conflicting reports in the literature. So far, scientifically controlled studies have not shown definitive proof of the effectiveness and safety of marijuana or cannabis in epilepsy. For example, in 2012, a literature review of clinical studies on cannabinoids for epilepsy could not give a reliable conclusion about the effectiveness of four randomized controlled trials of cannabidiol. Yet in the 48 people included in these reports, no side effects were noted. Conducting studies can be difficult as researchers have limited access to marijuana due to federal regulations and even more limited access to cannabidiol; there are also increased financial and time constraints.
Individual reports of children with refractory (or intractable) epilepsy who have tried cannabis, usually with high ratios of cannabidiol to THC, have reported marked improvements in seizure frequency, including a report describing the results of *Charlotte, a girl with Dravet syndrome.

* Charlotte lives here in Colorado.

 

[Cint]

Depending on what meds you take can really determine if it's safe to have a child or not along with if the epilepsy is genetic in your family.

Generally for most women with E, it is safe to have a child. Like I stated earlier, I have two happy, healthy, successful children. And I was taking Dilantin while pregnant with both. I was also taking a vitamin with Folate along with. However, I was told not to breast feed when they were born because of the Dilantin in my system.

Read here for more info on the subject:
http://www.epilepsy.com/learn/impact/reproductive-risks/risks-during-pregnancy

 

[Nakamova]

Hi flats88 --

I live in the Boston area, so I'm sympathetic to what you've left behind. After my seizures were diagnosed, I deliberately moved to an area in Cambridge in order to be walking distance to the subway, hospital, supermarkets, drugstores, etc. I hope you can find a similar (but more affordable) place to settle down.

I have generalized absence seizures and the rare grand mal. I was diagnosed at 12 and so have never driven. I am 27 now, and through college and for some years after, living in Boston suited me well because the public transportation/walkability was amazing. I'm going through a life transition now where I just don't know where to live. I left Boston a couple years ago to pursue art and travel. Plus, I just couldn't afford it anymore. I have plans through the summer but after that I'm stuck. Where do you live? My priorities are affordability, no need for driving clearly, and both vibrant arts and queer scenes. I am a dual Canadian/US citizen so that expands my options.

The U.S. dollar is doing well against the Loonie. Maybe time to check out Montreal or Ottawa? And in the states, consider Rochester, NY or Ithaca, NY

Unrelated question 2:
I'm in the place where... Though I am not ready for children for some time, I am starting to think I should be 'thinking ahead'. My neuros over the years have never addressed this with me much, perhaps even less so because they all know I'm a lesbian. Anyway. What things do you/did you do when you were in this mind frame? Recommended reading?

Most important thing is to make sure your OB/GYN and neuro are on the same page. Certain meds are safer than others, or are more less likely to be affected by fluctuating estrogen levels during pregnancy. Pre-natal vitamins are very important. I haven't had kids (that ship has sailed) but plenty of folks on this site have so hopefully they will chip in with more specific advice.

I don't have digestive issues, so haven't pursued the gluten-free path. I do think dietary treatment approaches are intriguing, though if you are considering any of them you should also consider how they might mesh with pregnancy down the road. You can read a bit more about diets here: http://www.coping-with-epilepsy.com/forums/f39/

Despite living in Cambridge I haven't tried naturopaths or homeopaths. I'm afraid I don't place much credence in homeopathy. You might look into seeing an osteopath if you're interested in a more holistic approach to overall health.

best,
Nakamova

 

[seagull]

I also have no credence in Homoptera and I happen to know if you taking hompatic meds and they working the doc very likely think your e is figment of imagination or you just going through a good period..At end of day it what floats your boat the diet in paper on on news it mentioned that bad fat is actually good for you it just proportions so I going out buy short eclair