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Bayly

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Everything posted by Bayly

  1. Batik, Rachel and Dizzyde--all great suggestions! I have to be brief, because doing anything with my eyes is a trigger, so excuse my "shortness" I am going to try acupuncture and will talk to my neuro optician about tinted glasses and other suggestions he may have. Thanks
  2. I have cfs with some dys issues. Have suffered from headaches, sensory overload and brain processing issues for one month and cannot work ( previously worked full time). What I have tried: Iv drugs typically used for migraine Migraine rescue meds like Maxalt In patient administration of Dhe Klonapin Neurontin Muscle relaxer Guided visualization Prayer Homeopathic remedies for headache Biofeedback Symptoms ease some lying quietly and are usually most mild in am upon rising. Within one hour symptoms worsen the more I am awake. Need opinions whether I should wait it out ( similar episodes before but not quite as severe and not as long lasting) Would a dys specialist be able to offer anything? (Have received lots of fluids, bp and hr normal) Would a cfs specialist be able to help? Have neuro who is headache specialist and integrative pcp All suggestions welcome as well as suggestions of who to see. I live in Kentucky and already saw neuro at Cleveland clinic years ago for same illness. Symptom pattern came on suddenly one month ago after pushing myself to exhaustion. Fatigue not an issue with this pattern. Many thanks!
  3. Many people with POTS improve and live relatively normal lives. Search previous discussions and you will find a variety of things that helped people get better. Personally, my dysautonomia has improved greatly as I have improved overall. I became ill suddenly from a virus 8 years ago. At first, I was housebound. Gradually, with trying many treatments, I got better and slowly better. I have been working steadily, full time for the past 5 years. There is hope. This is a wonderful site with very helpful people who have researched and tried exercise, supplements, dietary changes, medicines, etc. With my particular illness, chronic fatigue syndrome, what has helped me has included: rest, pacing myself, following a gluten free/dairy free/vegetarian diet, taking beta blocker, taking supplements, slowly incorporating yoga into my life, and I still search for ways to improve! Have hope and become as educated as you can. Peace,
  4. My eyes have definitely been affected by this illness. Symptoms have included blurry vision, eye pain, extreme dry eye, reading and/or scanning across a page or pc has caused severe motion sickness, etc... Many of my symptoms, including my eye issues, became less or went away about 6 months of going on a gluten free diet after testing positive for gluten antibodies. Going gluten free allowed me to go back to work full time and has been the most significant treatment for me.
  5. Does anyone get a delayed reaction that includes an asthma attack, tremors and waves of intense heat? This happened to me after I ate a Thai dish I have had many times with no reaction. My tongue got thick, too. Sheesh! This hasn't happened in years...since I got MSGed badly. I forgot how scary it can be! I took an antihistamine and sat up. The symptoms passed and I am better today...just have left over asthma like cough. I'm calling my PCP this a.m. to get a resue inhaler script. I haven't had a bronchial reaction this badly in years, so my script is years old. I sure didn't need this jolt before I fly for the first time since my dys occurred due to a sudden viral onset in 2005. I'm flying overseas and am anxious. That probably didn't help things when I had a reaction last night. Let me know if your symptoms are similar due to delayed food reactions. Many thanks,
  6. Like diamondcut, I was totally disabled due to extreme motion sickness, inability to track anything with my eyes, etc. and after seeing more than 20 specialists over 3 years, the huge turning point for me was finding out that I had high antibodies to gluten. I scored extremely high on the antigliadin blood test that I asked my neurologist to run after reading on an ataxia blog that gluten could cause so many of the neuro problems I was experiencing. I immediately stopped eating gluten and slowly improved over 6 months and was able to go back to work part time and then full time! I later found out that casein in dairy caused some of the same neuro problems, so now I follow a gluten free, dairy free diet and my migraine headaches and overall health has improved. Don't give up on trying to find things that ease symptoms. There is hope!
  7. My symptoms developed constantly over several years, waxed and waned in intensity, but have quieted down and some have gone away during the 7 + years I have been dealing with CFS and dysautonomia. My headaches have varied in frequency and intensity as well. The good news and hopeful news is that overall, I have improved significantly, but never expect to get back to my pre-illness condition.
  8. You just can't anything for granted when you have these crazy symptoms! I've never had a tattoo, but this week I had a microdermabrasion facial and I felt like I was going to become tachy and explode during the process (which did ouchie some). My propranolol kept a lid on any heart racing, but I felt like I drank a pot of coffee for about 24 hours after the facial. So dysautonomia even makes trying to get rid of wrinkles difficult! Sheesh!
  9. Learning that I was gluten intolerant after I had the antigliadin Igg blood test literally changed the course of my post viral fatigue journey (including lots of dysautonomia issues)! Six months after going gf the constant motion sickness I had for 3 years became manageable. The huge difficulty I suffered with reading (tracking info across a page, watching cars go down a street, etc...) also cleared and only shows up when I am terribly fatigued. It was only after going gf that I was able to work part time and have since recovered enough from cfs to work full time. I am sensitive to dairy, too and have cut that out of my diet. Dietary changes, supplementing nutrients that I have been deficient in and pacing myself have enabled me to recover by about 70 % of my pre-virus status. You have nothing to lose and EVERYTHING to gain by trying a gf diet. Go for it! Concentrate on eating whole foods and you won't miss the gluten. Here's to your health!
  10. I have post-viral chronic illness that includes autonomic dysfunction - most likely POTS. I suffered from nearly non-stop motion sickness and rocking and bobbing and NAUSEA for 3 years. Many days I was unable to leave my house. I tried everything to get it to stop. Klonopin, steroids, antivert, treatment for benign positional vertigo, cranial sacral therapy, massive amounts of prayers, etc. My motion sickness issues decreased significantly within 6 months of going totally gluten free. I discovered my body was making antibodies to gluten via an anti-gliadin blood test. I tested off the charts positive to gluten antibodies and immediately began a GF diet. Slowly, over time, my motion sickness, inability to walk straight, inability to read or track anything with my eyes became much better!!!! I was able to return to work part time and am now back full time. I am now dairy free, too, because I began having the same bad reactions I used to get when eating gluten. I'm often asked if staying gluten free is difficult (now into over 3 years) and my immediate answer is HECK NO!!! What IS difficult is battling motion sickness and not being able to use your eyes and leave your house and nearly having to go on permanent disability! Not THAT's difficult! I feel for all those who have this disequilibrium. Keep trying everything. I hope you find something that helps. I still get motion issues after driving or riding long distance, watching the ocean, and sometimes for no unknown reason, but it is not chronic day in and day out. Stay sane and keep trying remedies. (including a gluten free diet, it that's what it takes!) Peace, Bayly
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