PlanetJanet’s Profile
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PlanetJanet
is feeling OK
About Me
I most likely have Sjogrens Syndrome as well as Tolosa-Hunt Syndrome (a rare inflammation of upper sinus cavity causing pain behind one eye.) Also, this year my 4 year-old son was diagnosed with Autism. He's high functioning and truly amazing. He gets lots of help and is the apple of my eye. The really hard work is over and he's such a joy to be around. I am trying to cope as best I can with this pain behind my eye and major fatigue-- also dry eyes, mouth, throat come with this package, not to mention the memory loss which has recently turned me into the biggest airhead on the planet.
Interests
Spending time with my son and trying to get well are my main priorities right now, but here's some of the things I enjoy doing when I feel well and have energy: baking sweet treats, learning about history, keeping up with current events, second hand shopping, sewing, genealogy research and throwing myself into a creative project is great fun for me. I have lived abroad in the UK and Sweden for many years and speak conversational Swedish.
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Hugbook
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Hey PlanetJanet', hope your doing OK. Al
Prayer
Happy Mother's Day
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Yep sure sounds like a food induced intolerance to me. My recomendation is to hind a really GOOD Allergist or an Immunologist who specialises in allergy. They will employ an Allergy Nurse who will do the Skin prick test, RAST testing and if nessecary the contact dermititus allergy testing. The breakthrough for me came when I did the detailed Food Elimination Diet followed by the food challanges. The problem foods stuck out like the proverbial. The detailed Food Elimination diet had me eating only pears and rice for Breakfast, Lunch, and Dinner for three weeks. After this period you then add one food every 3 days to your diet. All gentle low amine low salicylate combinations at first. By the time I had added my sixth High Amine food to my diet it was obvious. For me High Amines were triggering Migraines. One thing is for sure , you get extreamly creative in how you prepaire pears and rice. Once this was determined the Allergy Nurse helped my wife and I to sort out our standard recipies. We concurrently migrated the whole family on to Sue Dengates "Failsafe Cookbook". Sue is a mum. Sue is also a Psychologist and former high school teacher and over the last 15 years has specialized in Nutrition. Her Husband Dr Howard Dengate is a doctorate in food science and is a scientist with a prestigeous research institution the CSRIO. Together they make for an impresssive team. The results have been great. I'm migrane free aswell as the kids being far more civil and cooperative. We eliminated preservitives from our diet. The links are; http://www.fedupwithfoodadditives.... http://www.zipworld.com.au/~ataraxy/Salicylates_list.html http://www.zipworld.com.au/~ataraxy/Amines_list.html All the best Ali5tair
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Thanks for being a new friend. Here if you need me. Big hugs and prayers, strength and peace. James :)
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I’m With You
Sorry JanetI didn't see that you had asked a Qn. Yep my Sjogrens symptoms sound the same as yours. I get shaky hands though not all the time, I found Magnesium helps with easing muscle twitches and probably stops the shaky hands. Do you have to take water with you everywhere. I started carrying 1.5 litres water with me everywhere I go about 6 years ago. Eyes are gritty all the time, drops uring the day and a nice thick ointment at night when I hit the cot. Its nice and cool too. I'm trying a special Electrolyte Saliva Gel made up of Chlorides of Potassium Calcium and Magnesium. During days when I am particularly dry I rinse 5ml around my mouth and swallow. It helpes my tummy digest meals when my gut is dry. Thankfully because of CFS I have to eat frequant small meals so that I dont crash from to much energy being directed to my tummy for digestion. I think this helps my GI tract stay moist which limits any induced pain. Cheers Ali5tair
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Support Groups
Close Other Eye Problems
Type: OtherI've been suffering from what I believe is Tolosa-Hunt Syndrome for 8 months.
Close Sjogren's Syndrome
I probably have Sjogrens Syndrome and could really use some support! I don't take anything for it right now, but the time will come soon where I will probably need to take something for it. Your experience could really help me. Thanks, Jan
Open Autism / Autism Spectrum
My son is four years old and diagnosed with Autism. He is high functioning and doing very well with therapy and a personal assistant at his preschool. We are very optimistic he we be recovered in a few years. I would like to work with autistic children in a few years. Any stories or support or questions? Please write me!
Treatments
- ABA Working / Worked
- Avoid Certain Foods / Chemicals Somewhat Helpful
- Behavior Management Working / Worked
- Early Intervention Working / Worked
- Patience Working / Worked
- Play Therapy Working / Worked
- Speech Therapy Working / Worked
Open Migraine Headaches
I have had a headache behind my right eye every day for 8 months and it has turned my world upside down. I have had chronic migraines since age 11.
Treatments
- Avoid Certain Foods / Chemicals Working / Worked
- Raw onions, blue cheese and artificial maple syrup will trigger a migraine for me in just a few minutes after eating them.
- Caffeine Somewhat Helpful
- If I drink something caffeinated early in the migraine attack, it can help about 20% of the time.
- Midrin Working / Worked
- Made me very drowsy and all I did was fall asleep, which is something, but what I really want is to just get on with the day without pain.
- Zomig Working / Worked
- This is the only thing that works for me. I am surprised how well it works, although I feel some side effects that make me not want to use it often. It feels very hard on my body. Shame, because I need it often. It's also very expensive. Currently, it's the only thing that will allow me to get back to my day after 30min to 1hour-- that's not bad! I would recommend at least some doses for very important days like while travelling or attending special events.
Open Health Care Reform
Health Care Reform is so important to me!
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