[JosieTheGirl]

Hi.
I usually hangout on the sister site, psychcentral forums. Only, I have a lot of issues that are physical- many which are addressed here- that I don't really talk about in detail to many people.

I probably should, as the experience of being chronically unwell is adding a lot of stress.

I've had migraines, technically, since I was 8 or 9. The improved for a while, my guess is all the hormone insanity during puberty... then came back, starting as inconveniences and eventually becoming classic migraines with all the typical fun that has to offer.

I was in a car accident in 2005; the car "rolled over" twice. [or rather, what really happened is the wheels ended pointing at the sky a few times, but the momentum kept it going down the hill]. Eventually I was diagnosed with TLE and while the car accident certainly didn't help matters, it's clear I was experiencing symptoms to some degree for a long time before the accident.

I also have a lot of pretty intense food intolerances. I either have gluten intolerance that looks a heck of a lot like celiac or more likely [as my GP thinks], actual celiac. There's a laundry list of other things to deal with right now though so adding a gastro isn't happening.

But I also experience acute vision issues, various forms of neuropathy, sleep issues, some other stuff.... all the blah blah blah.

I don't know, I should have come here to talk with people before now but i don't know why I didn't.

I always feel like I'm whining if I talk about things that are wrong.

Anyway, sorry so long. Feels good to write at least a little of what's going on.

Thanks for reading.
Josie

[mrsD]

Welcome to NeuroTalk:

Here the more you can tell us the better. DETAILS...

For example... if you do have gluten issues, you could improve the migraines and seizures with gluten free. Some people have improved seizures this way.

Here is a link to the Gluten File. The member has an interesting personal history on her blog, so really it is a treasure trove of information:

http://neurotalk.psychcentral.com/thread1872.html

People with longstanding gluten issues often become low in important nutrients.... B12, folate, zinc, iron, calcium, and B complex, magnesium, and many others. Low magnesium levels can make migraines much worse, for example.

So if you can get tested for B12, and Vit D...get those results and come back here, (doctors often do not interpret the results correctly)... that would be a good starting point.

There is alot of homework involved with keeping gluten out of the diet. You are fortunate today, because there are many more foods now labeled gluten free, that you can get affordably and easily. For example Rice Chex and Corn Chex are gluten free now.
There is a Gluten free Bisquick. And the Tinkyada pastas made from brown rice are just like wheat pastas and most stores now carry them.

You are welcome to come to the PN forum anytime. Many of us do gluten free and know about the various supplements to try.
http://neurotalk.psychcentral.com/forum20.html

[JosieTheGirl]

Hi, thanks for responding!

I am already on a gluten free diet [and dairy free. I pretty much don't eat eggs and avoid soy as well].

The thing is, that my absorption abilities have likely been affected pretty terribly. I recently was tested for vitamin D because i have a lot of classic symptoms of deficiency- including a lot of joint pain, fatigue. I eat and drink so many things that are fortified with vitamin D- it wouldn't be completely bizarre for it to be low, but it came up ~7. I also have low iron, and I have taken magnesium in the past, but I'm going to see a dietitian this week and want to run some things by her.


I take fish oil [lovaza] and we added the mega doses of vitamin D.
I feel a bit better, but my joints still really hurt. I'm seeing the rheumatologist this week also- we ran tests for various related issues and it came up with bizarre results.


As far as diet in general, I try to eat as healthy as possible- get more bang for my buck in terms of nutrition because I'm on a limited budget... which also lends to suspicion of poor absorption issues.

Thanks for the response! I'll certainly check out the other areas, it would be nice to chat about that stuff.

[Jomar]

Is TLE - Temporal lobe epilepsy ??

Did you get any sort of whiplash in the accident?
If it is a possibility some of your issues can be related to that.
Any arm, hand,neck,shoulder pain?
If so explore our thoracic outlet syndrome (TOS for short) sticky threads..
Triggerpoint and various other therapies might be helpful info for you there.

Have you had x ray or MRI of the c spine to rule out any spine related nerve issues?

[JosieTheGirl]

Yes TLE= Temporal Lobe Epilepsy

I'm currently doing chiropractic again- it will help eventually.
The accident was many years ago, and things have been getting more painful in the past year or so. I have done chiropractic before and it helped shortly following the car accident- as there were clear issues with my neck- but there are more issues than just those possibly caused by the accident.

It kind of just feels like it never ends at this point. Fix one thing and it turns out there are two issues involved so then you need to address both of those... Also some things will improve one issue but possibly negatively affect another.
Like that mythical creature with the infinitely reproducing heads [hydra, maybe?].

I have pain in pretty much every major joint and it tends to radiate, so RA is suspected as are a couple other things. Only odd thing is that the sed rate came back normal [9, I think] but there is clearly inflammation.

Also positive ANA... so that's fun.

[JosieTheGirl]

Also... I have a question about possible neurological affects of a specific supplement or similar, mostlly related to the TLE...
Does that go in the supplements area or the epilepsy area?

:/

[mrsD]

C-reactive protein also indicates inflammation.

There are medications that can cause drug induced lupus...
Here is a link:
http://emedicine.medscape.com/article/1065086-overview

If you don't belong to medscape yet, it is free to join and easy.
Some really good medical information is available there.

The lists on the sites are all different, some more complete than others. So you can take the generic name of the drugs you use one at a time, and plug them into PubMed (link at the top of the page here), with a keyword qualifier, lupus etc and see.

My recent reaction to lisinopril was on a PubMed article, but does not appear in some medical sites' lists yet.

[mrsD]

If it is a nutritional supplement use our Vitamin forum or Medication forum. The epilepsy group many know about or not, depending on how common it is. But asking at Epilepsy is also a good idea.

[Darlene]

Josie,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[JosieTheGirl]

Thanks for the welcome

I have an account on medscape and a lot of access to research articles generally. I hadn't considered drug induced lupus. I looked at a lot of the meds and only one of mine is coming up with any consistancy, but I've been on it for almost a decade.

I would still consider it possible to invoke these kind of response/symptoms, I'm just not sure about the time line.

To be honest, I don't often talk/communicate in detail about my health conditions. Usually just a general thumbs up/thumbs down kinda thing. I'll mention appointments in passing.

So, to be specific about things and discuss in a very open manner is just something I'm not used to. It's a bit overwhelming.