Fibromyalgia and epilepsy question

[Rae1889]

Hi there all, just a quick question to those with Fibromalagia and Epilepsy.

What meds are you taking? My friend that I met on 3 occasions, has suspected Fibro and is taking Lyrica for it. But she also described to me seizure like symptoms (frequent deja vu, numbing of one side and twitching) so I just would like to know how someone was diagnosed with both of these, what they are taking and if they ever had a gran mal too? *she has not*

thanks!

 

[Meetz1064]

I have

both. However, because of the.....what is the word I want???...contraindications between all of the numerous medications I take, including the four seizure meds, I don't take anything for it. I use a muscle relaxant, stretching, heating pads and painkillers as necessary. Deep breathing, relaxing CDs, and a lot of mind over matter........

 

[dfwtexas]

my pain management doctor put me on Lyrica for nerve pain. I take Keppra for seizures. My pain doc said Lyrica is not a good seizure med but had me check with my neuro first. Neuro agreed, Lyrica is a ineffective seizure med but does good with my nerve pain treatment

 

[roo]

Hi, I have M.E. and developed fibromyalgia a little while into this illness. My M.E. doctor put me on low doses of Rivotril and low doses of Lamictal (off-list) These were to address the tenderness and hypersensitivities. I also have high dose B12 concentrate injections daily. They are for my neuropathic pain. I think in some patients with FM as in M.E. they prescribe anti-inflammatories, but I am allergic to them. Also, low doses of anti-depressant meds can sometimes help.

Your friend could very well have both conditions i.e. FM and Epilepsy. If she hasn't aleady done so, she should probably go and see a rheumatologist and a neurologist to find out what is going on. The numbing and twitching could very well be FM but I have never heard of an FM person having deja vu.

You are a good friend!

take care,
roo

 

[RobinN]

Rebecca has a friend (age 17) that has had it since 3rd grade. She controls it with diet. She is completely off of any foods containing gluten

 

[Rae1889]

Gluten seems to be a common link between a lot of conditions *Sorry Robin, I'm starting to follow what your saying now. took a while to understand*

That must have been a big leap for Rebecca to stop eating gluten. I love to eat barley and gluten products. Is there subsititions that don't taste like wood chips and cardboard?

 

[RobinN]

I really just jumped in once DogtorJ explained that I had nothing to lose.
It has been a new way of thinking for Rebecca, however she was dealing with some terrible side effects to medication so, any relief was an improvement. She knew about the "diet" because of her friend.

Also, I took a positive approach to it. Rather than thinking about what she "couldn't have" I only wanted to show her what she "could have". Just like with Standard Contemporary "food", there are some that are good and some that "taste like wood chips and cardboard". We tried a lot and found many that we liked better than old standbys. I use to love to eat certain junk products too, but realized how damaging they are to my health, so I look at them from a distance from a different perspective now. Many are just not even appealing any more.

If you look at food as a way to provide the body with nourishment and energy, the choices become clearer as to what to consume. I am realizing though that it isn't just eliminating gluten. It is eliminating or reducing the amount of simple carbs. Our nutritional pyramid seems to be outdated.

There are some great flours made from brown rice, garbanzo/fava, quinoa
It is a matter of trial and error, and patience. It isn't overnight success, but rather a long distance run.

For some it isn't just the gluten as DoctorJ points out. It is the gluten, casein, soy, and corn proteins. Again trial and error, but once you begin seeing results, it is encouraging.

 

[RobinN]

QUESTION: Is there a correlation between Celiac Disease and Fibromyalgia? In other words do people with Celiac Disease often experience Fibromyalgia?
DR. FINE: Yes fibromyalgia complicates any disorder that involves malabsorption which accentuates the absorption of oxalate, a naturally occurring organic acid that among others seems to be at the root of fibromyalgia, along with some immune and neurologic factors. Search oxalate and fibromyalgia on the internet to learn about low oxalate diets.

http://www.clanthompson.com/exp_doc...on_id=134&coded_category=&coded_category_id=2

 

[roo]

Hi Rae, If it turns out that your friend does have FM she could try a gluten free diet as suggested by Robin. If it is too difficult at this time for her/him then even trying an elimination diet might help. Perhaps starting with wheat, as some people have problems with wheat but not necessarily gluten.

The idea is to withdraw a suspect food or group of foods from the one 'family' for several weeks and then re-introduce the food or foods back into the diet. Keeping a journal can be a good way of tracking whether there is any improvement or no improvement after the food has been withdrawn or worsening of symptoms once the food has been re-introduced. It can be a long process working out the culprits, but once found it can be of benefit. As Robin has said it is not a quick fix.

I have personally found after twenty years of trial and error what 'works' for me. A combination of eliminating known foods which cause sensitivities and allergies; vitamins, minerals, probiotics, digestive enzymes and low GI foods - as prescribed by my physician - and as mentioned earlier certain medications in low doses.

Your friend is most likely a fair bit younger than me ( ok, well probably a LOT younger lol) and from what I gather has no other inflammatory or immune illnesses, so if she/he gets onto establishing good dietry habits (if not already doing so) and perhaps trying an elimination diet, it might afford some relief.

take care,
Roo

 

[gigi]

food

I have been slowly cutting way down on my processed foods for some time now. My kids come over to my house, look in my pantry and tell me, "Mom you have no groceries!"
I started this process, since my digestive tract took on a life of it's on-it appears to have a multiple personality! After I had a hysterectomy in 2003, everything changed. I now have trouble with my thyroid also. I think the epilepsy, being on dilantin for over 40 years all ties in with the thyroid and digestion thing. Oh and in doing research on my thyroid, I stumbled across a correlation between hypothyroid symptoms and an over abundance of candida in the body. I have the symptoms, but normal blood work. Complex carbs also can play a role in that. Alot to be said for what we consume.

 

[roo]

Hi gigi, there certainly is *a lot to be said for what we consume*, and not just what we put in our mouths. There is also what we breathe, how we think and feel and other things, such as the chemicals in our environment that we are exposed to.

I'm sorry to hear you are having these problems. I have heard before that Dilantin can affect a person's thyroid. You said you have had blood tests, may I ask was this for the thyroid or the candida or both.

You mention your hysterectomy as a catalyst for your current thyroid probs and I'm assuming your digestive problems. They give you so much antiobiotic post op that this could have tipped your intestines over the edge.

They thought at one stage that my gut disturbances were due to candida, but I had faecal studies done which showed no candida but complete disarray of the intestinal microflora, causing irritable bowel syndrome. This was as a consequence of my long term health problems. These tests don't come cheap and I don't know where you would get one done in your country. But, it is a possibility that you have IBS. You could start with talking to your pharmacist and asking about probiotics. If you have never had them before it is always best to start off with a low dose and gradually increase. Or you could ask your doctor to see if he could arrange faecal studies for you.

You are doing the right thing by cutting out processed foods. There is nothing better than fresh home cooked food and fresh fruit and veg. So much more satisfying, in many ways.

Roo

 

[RobinN]

What I have read Roo, from parents that have gone this route with their children is that the tests for candida / yeast / fungal issues are not always caught on the typical lab tests. Sometimes it has migrated even into the brain, so it won't necessarily be picked up on conventional tests.

Probiotics for some work, others swear by biotin, as it helps to control yeast in the gut. Some also recommend GSE, but this can not be taken if you are on anti seizure meds, as it has grapefruit in it. I swear by the liquid.

 

[roo]

What I have read Roo, from parents that have gone this route with their children is that the tests for candida / yeast / fungal issues are not always caught on the typical lab tests.

That's right Robin. That is why I had follow up with specialised fecal testing.

 

[gigi]

Hi Roo!

Thanks for your reply! Thyroid blood work is what I have had, no tests for candida. My gyno found I had 3 nodules (goiter)which has since shrank since being on medication. I would like to get blood work for candida, since I have trouble with yeast infections, with nothing else showing up for the cause, I suspect I have an over supply. I did have antibiotics after the hysterectomy, and complications. My doctor did announce to me "you have IBS!". A hearty diagnoses without anything but drugs to treat the symptoms. I have been on a journey for six years to try and treat myself. Funny you mentioned probiotics! I just started a regimen of probiotics and fiber, over the counter. Next time I go to doc, I will see if they can do the fecal test for candida. I hate it that my digestive tract has become such a focal point for my whole existance. Something I used to take for granted, is now like babysitting an angry toddler everyday. Thats the only comparison I can think of at the moment! :bigsmile:

 

[roo]

Hi gigi,
I sincerely hope you get some help soon, it's a horrible thing to have to deal with on your own. Candida overgrowth can be as a result from a disturbance to your intestinal flora. If you can get a definite diagnosis, then you'll be able to take the appropriate steps to tame that 'angry toddler'

take care,
roo

 

[RobinN]

That's right Robin. That is why I had follow up with specialised fecal testing.

From my understanding the fecal is what is not reliable. I will see if I can find the source on this.

http://www.celiac.com/articles/1020...a-Albicans-by-Michael-Biamonte-CCN/Page1.html
http://www.drkaslow.com/html/leaky_gut.html

these tests seems to be the respected ones being used most often:
http://www.greatplainslaboratory.com/home/eng/oat_yeast_combo.asp
http://www.genovadiagnostics.com/index.php?option=com_gpanel&Itemid=2&task=view&nav=doc&id=9
Blood test is used more often then stool testing

Another basic indicator is the health of your tongue
and
http://www.adhdrelief.com/CandidaTest.html

 

[roo]

From my understanding the fecal is what is not reliable.

Depends on *how* it is done.

Unlike standard stool pathology this is a specialised faecal microbial analysis. The twelve major microbial species tested include the following aerobic bacteria - E.coli, Klebsiella/Enterobacter, Enterococcus and Streptococcus,
And the following anaerobic bacteria - Bacteroides, Eubacterium, Bifidobacterium, Lactobacillus, Clostridium, Prevotella and Porphyromonas. And the following fungus Candida Albicans. Further aerobic and anaerobic species are reported if in overgrowth.

I have no reason to doubt the testing laboratory. They have dedicated more than twenty years of their collaborative scientific research (from two major universities) in the areas of microbiology, biochemistry, immunology and biology. Their research has formed their testing platform, results analysis and treatment protocols. The science behind their discoveries has been published in international peer reviewed journals since 1992.(have just been reading some of the paper work I have)

They came highly recommended by my physician who has been treating patients with my illness for over 25 years, and this recommendation came after I was first tested by them fifteen years prior.

No doubt other tests may work, but this laboratory's credentials as far as I'm concerned (and I'm by no means the only one) work for me as does their recommended treatment strategies.

I guess it's a matter of 'horses for courses'.

Thank you for the links Robin.

cheers,
Roo