stacdliw

I really enjoyed reading your blog. I read all of your entries and found them well-written and interesting. They were also quite humorous as well and found myself chuckling often. I'll try to click on your blog in the future!

So happy that your wedding day was a success and you were able to enjoy it to the fullest! Your dress was absolutely georgeous! I hope you recover quickly so you can enjoy your honeymoon!!

I know that many of us here suffer from migraines and I just wanted to share my experience with the Botox procedure. It has been a godsend! Prior to having Botox, I was having at least 4-6 migraines per week, most of those moderate to severe. Relpax was my best friend and my pharmacist was alaramed at the amount of Relpax I was taking per month. When my migraine specialist first applied to the insurance company for approval, I was denied-- I think because I didn't meet the strict guidelines for the number of 4+ hour migraines needed per month (see link below). My migraine specialist didn't give up-- I'm not exactly what he did, but I do know he spoke directly to one of the neurologists who is on the panel who makes the decisions for Botox/Migraine decisions and his appeal included that I suffer dysautonomia with symptoms which include migraines! The first time I ever had a doctor that actually understood dysautonomia and its symptoms and fought an insurance company and won! I had the procedure done three months ago.The neurologist sticks 15 tiny needles in various places around your forehead, skull and the back of your neck (see link below). It doesn't really hurt at all and I can't say Isuffered any major side effectsl. My neurologist said that I should see a 40% improvement and that the severe headaches should become moderate headaches, the moderate headaches would become mild headaches and the mild headaches would become very mild or none at all. My neurologist told me to call back in six weeks to report how well the Botox helped my migraines. I had kept a thorough journal for six months prior to the Botox procedure and logged the date and severity of each migraine and I did the same after the Botox procedure. I saw an almost immediate improvement right after the Botox procedure. Overall, I had a 42%reduction of all migraines. Most importantly, I had a 80% improvement in severe migraines, including those lasting 4+hours. In the past, I was averaging 2-3 severe migraines a week. Now, I have had only 3 severe migraines in 7 weeks! More importantly, most of my moderate migraines can now be treated with over the counter meds!! Such major improvement!! I have to have the Botox treatment every 3 months and the neurologist says that with each treatment I'll see even more improvement. I'm sooo thrilled. I was bedridden at least 3-4x weekly with my migraines. So, any improvement I can get, I'll take. Please click on the link below and see if your migraines qualify you for the Botox treatement. If you think it does, run, don't walk, to your nearest migraine specialist. I can't tell you how this has improved my life! I hope it can help you too! http://www.botoxchronicmigraine.com/about-chronic-migraine/?cid=sem_CMB_goo_s_7899

I have a severe neuropathic pain disorder of the upper gastric area, and most recently, of the colon. For the past 18 months, my Pain Specialist has been slowly increasing my dosage of Neurotin, so as to cause no adverse side effects. My pain is so severe that within the last 2 months, my Neurotin has been increased to 2400mg daily, but I'm noticing side effects which I didn't have never had before. Nothing serious, just an increase in nasal stuffiness, ear stuffiness, ear noises( tinnitus), and inconsistent blurring of my vision. Though I am near-sighted and can read text fine, I am sometimes finding the words in a book as blurry as the words on the TV several feet away. Plus twice in the past six weeks, I have awoken to bloodly ear drainage on my pillowcase, but my doctor found not only no evidence of a ruptured ear drum, but no evidence of a reddened ear. However, regardless how annoying these side effects are, I'll just have to live with them. After almost 2 years of constant severe pain, I'm finally getting some relief with 2400mg of Neurotin! But I do have two questions: Is it common for side effects to occur only when an increase on Neurotin occurs? Has anyone else had similiar side effects with Neurotin? Thanks, Bev Ray

Congratulations! I can only imagine the overwhelming sense of relief that you must feel!

I could swing for a short time, but if I swung too high, I remember getting really nauseous. I never could tumble-- made me sick every time. Never could ride the ride the rides that went round and round in 360degrees-- that would definitely bring on a nausea attack. However, roller coasters were my passion. I remember my brother and I riding the The Beast in the front seat at Kings Island when I was in my mid-40ies and we were one of the oldest on the coaster. I wouldn't dare to that now-- I'm sure I would be vomiting before we made it up the first hill!

Worst--- No doubt, up to 4 hours after waking. Can't say morning because I sleep until noon ; the brain fog is the worst during this time period-- word finding is awful, forming complete sentences is a struggle and spelling correctly, forget it!; seems to take forever to wake up; most symptomatic as well BEST-- 7pm -3am most alert during this period with the least symptoms

Anything that is healthy for "normal" people is a BIG "NO-NO" for me! Fresh fruits and veggies- FORGET IT! Whole wheat, oats--- NEVER!! MEAT-- very little, maybe some chicken. I've suffered with gastroparesis for 8 years and take 6 tablets of Domperidone daily. My diet is a mess. Some days I feel like eating, others I nibble like a bird. Some days my digestive system works, other days I get nauseous even looking at food. Such is life!

My daughter is getting married on May 19th and I want to get some color, especially on my face, since I'm so pale from being sick. However, I'm afraid that a tanning bed, with its heat, will trigger my POTS symptoms since hot baths and the summer heat does so. Has anyone had any experience with tanning beds and its effect on their POTS symptoms? Thanks, Bev

Gradual onset, with slow improvement over years and now with good days and bad days.

I have recently subscribed to a WebMD blog called "A Different Normal: Living With A Chronic Condition" I subscribed because for the past year I have been suffering with a moderate/severe idiopathic upper epigastric pain disorder right under my sternum that is brought on my drinking liquids. In most instances, the pain first occurs within 2 hours of me awakening and can last up to 2 hours, despite 20mg of oxycodone. After the pain has subsided, minor pain still exists and intensifies if I stand. In most instances, the pain will return within 5-6 hours and the routine will repeat itself, leaving me exhausted. During the past 6 weeks, I was able to leave the house once unescorted. So, like you, I am housebound and often get depressed. Normally an upbeat person, this pain disorder has tested my postive attitude despite withstanding longstanding battles with Chronic Fatigue, fibromyalgia, gastroparesis and POTS. I must say that I do not know how you are managing raising a young child with the health chanllenges you face daily. I admire your devotion to child and your determination to overcome your challenges. Luckily, my children are no longer living at home and we are fiancially secure. I 100% concur with your decision to use your Social Security monies to help with childcare. You MUST do whatever it takes to help yourself! Taking care of young children is one of the hardest things you can do, so please hire some help so that you can get the rest that your body needs. For the first time in my life, I am seeing a therapist to help me deal with not only the physical, but also the social and emotional effects of my health conditions. I know that you are unable to physically leave the house, but I wonder if there is a counselor in your area who would be willing to conduct therapy sessions over the phone. I am seeing a counselor who deals with clients with health issues which is an exta bonus. Seeing a counselor has been great, if for nothing else, just to have someone objective just to listen to you, really listen to you. Sometimes I just gripe for 60 straight minutes and that's what I need-- who else would listen to me complain for that long! Below is a link to a blog from A Different Normal in which readers provided suggestions on how they dealt with their depression/feelings of helplessness concerning their illness and feelings of isolation. The blog is pain oriented, but the suggestions provided can be applied to anyone dealing with a chronic illness. I found several new tips that I plan to add to my regimen. Hope you find something that helps. Just remember: Never, ever give up. Even though it may not seem like it, your body is fighting to live. As long as you are alive, there is hope. And never forget, your family loves you and needs you. You may feel like you want to give up and withdraw from everything, but without you, your family would lose an important part of their life. That is what has kept me going for the past 17 years-- I continue to smile, laugh and be grateful that I can still be apart of my fabulous family who loves me more than I love myself! http://blogs.webmd.com/chronic-conditions/2012/03/how-to-find-smiles.html?ecd=wnl_nal_cpb_031412

When I was first diagnosed 2 years ago, I was diagnosed with small fiber neuropathy in my feet and ankles by the QSART. The QSART was repeated last October and I no longer have small fiber neuropathy in my feet, but now I have it in my hands. This is not a normal progression with improvement in one area and progressive neuropathy in another. It's referred to as "patchy neuropathy." I have gastroparesis which my GI believes is due to neuropathy. For the past 18 months, I have suffered from an idiopathic moderate/severe upper epigastric pain that my GI believes is "probably" due to neuropathy and my neurologist says "could be" due to neuropathy. Since I've had every GI and neurological test under the sun and the results were normal, I believe my pain disorder is definitely due to neuropathy.

Just some words of wisdom that I got from my GI when I was going through the diagnosis period and scared to death because of all the scary possibilities that I had read on the internet that somewhat correlated with my symptoms. He told me that the internet was great for research after a diagnosis has been made by a doctor, but a patient should never research their symptoms so as to make their own diagnosis. He's right, of course, the possibilities will only scare you. I ended up having gastroparesis and small bowl dysmobility, but I had convinced myself through self diagnosis that I had stomach cancer and scleradoma. Of course, once I developed symptoms of dysautomonia, his words of caution didn't stop me from researching the cause of my symptoms! You will be in good hands at Vandy. I was diagnosed with POTS at Vandy and I was impressed at how thorough and extensive their evaluation process was. I know how scared you must be at this time, but you are going to one of the best hospitals in the nation and you will get excellent care. We'll all be thinking of you and praying for a speedy recovery. Please keep us posted!

It's not just you. I'm 58 and use to have 3 really close friends, one of which was job-sharing partner for 15 years and the other my sister-in-law who was my roommate in college. At first, my friends use to call to check on me, but as the weeks turned into months and the months turned into years, they rarely call now. In a way, I can't blame them. I don't have much to add to the conversation because I'm on disability so I don't work and I have so many different illnesses that I'm literally bedridden most days of the week. I don't want to bore them with my health issues, but right now, that is my life and I don't have too many other things to talk about. I'm like ramantenkesh in that right now it doesn't bother me much that my friends don't call much because, I'm just too sick to talk most days, much less try to socialize!

I, too, was diagnosed with fibro and chronic fatigue 16 years ago. I presently take Cymbalta twice daily and it has definitely helped with the pain. When my insurance was Express Scripts, they first tried to deny coverage of Cymbalta; however, because Cymbalta is approved for fibro pain and there is no generic for the Cymbalta, they begrudingly approved it. As to what I have found helpful during flare-ups: Tramadol is helpful and cheap. I also bought a Thermaphore Maxheat heating pad that has velcro which allows you to strap it around your leg-- it feels wonderful on an aching leg. I really need to get another one so I can have two going at the same time. I see a Pain Specialist for a neuropathy related upper gastric pain disorder. He also treats me and others for fibro. He prescribed Voltraten Gel, which is a topical ointment to be applied to my aching muscles. It really does help. Once again, Express Scripts denied coverage, but I paid out-of -pocket and it was like $37-- well worth the relief I got. Luckily, I now have BCBS insurace and they cover all my prescriptions, no questions asked.

I was tested at Vanderbilt and do receive my ongoing care there as well in there Speciality Clinic. I live in Louisville, KY and made the trip to Nashville every 3 months immediately following the testing for medication stablilization and now I'm on a every six month schedule.

I have had gastroparesis for over 8 years and have struggled with eating issues since then. Most of the time, I had an appetite but couldn't eat because I was nauseous. However, last August I became ill with a gastroparesis flare that lasted over two months. Since then, I have had absolutely NO appetite, which is rare for me. All I want to do is drink, eat pudding, or suck on hard candy. Because of my gastroparesis, I can't drink Ensure because of the fat content, so I try to drink a Carnation Instant Breakfast, but sometimes that is pushing it. I suffer from constipation frequently, so Miralax is my friend. I do take a Centrum daily to ensure I'm getting all the vitamins I need. I see my GI tomorrow and I'm going to discuss this problem with him, but I know there's no solution.

I get sporadic head pressure as well, though it is hard to describe. Mine, though, is basically centered at the top of my head. I was bedridden with it all day yesterday. I didn't want to move, watch or even listen to the TV, eat or even talk. I just felt absolutely horrible. Can't really say that my head hurt or ached-- I just felt weird. Luckily, today, I feel much better and the head pressure is gone. Sure wish I knew what was causing it!

I applied for a Handicapped Parking sticker last year and began riding the scooters in the large stores as well. After huffing and puffing and nearly passing out several times in those large stores, I decided that my health was more important than my pride. I must say, I'm not the world's best driver of automobiles and 12 months later I'm still a horrible driver of the scooters. I'm absolutely horrible in reverse! I literally almost knocked down one of those standing displays in the aisles at Kroger's. I'm really dangerous. I've gotten a lot better, but I still warn people to watch out when I motoring down the aisle. Two things I've learned about the scooter. If I'm having a bad breathing day due to tachycardia, I still can't go to the store by myself. If I have to get up and down to get items off a high shelf, my heart rate will sky rocket by the time I'm half way through the store. Secondly, I never leave the house without a drink. In the beginning, I would take a can of caffeine free coke. Well, I learned real quick that I needed a drink with a screwable cap. Some scooters have quick starts and the liquid will spill everywhere, so don't be stupid like me, take a drink with a screw cap! The Handicap Parking sticker has been a lifesaver! In Kentucky, at least, I didn't have to fill out any paperwork. My doctor filled out a short form indicating that I was handicapped ( the form didn't even ask for the type of handicap) and I took it to the Division of Motor Vehicles and I was given a Handicap Parking sticker, no questions asked. On the rare days that I am having a good heart rate day, I don't use it. However, if I'm having a bad breathing day due to tachycardia, I have no problems using the closest handicapped parking place nearest the door. During XMAS season; however, don't expect to find too many empty handicapped parking spaces at the major stores or malls though. However, my sticker has allowed me to shop longer in the mall where there are no scooters because I was able to park so close to the store. Heck, last year, I was able to park near the front door at the Final Four in Houston to watch my beloved Kentucky Wildcats because of my Handicapped Parking sticker. Otherwise, I would have had to walk for blocks and blocks and climbedd several ramps to get to my seat. So the Handicap Parking sticker is very beneficial and necessary because, afterall, we are disabled!

Yes, I also suffer from the Head and Body symptoms that you describe. Many mornings I awake with a pounding headache in the temples, eyes and at the back of my head. I suffer from horrible migraines, so I attribute it to my migraine problems and take a Relpax and drink some coffee and that generally helps with the pain. As for the body pain, I suffer from modereate/severe fibromyalgia and there are times my whole body aches from my neck to my toes. It is always muscular pain, never joint pain. Sometimes I don't even have to move to be in pain. Sleep is frequently disturbed. Tramadol helps with that type of pain. Recently, I have suffered from a moderate/severe pain disorder that affects the upper epigastric area and my lower back. Lately, it has centered on my lower lumbar region. My Pain Specialist ordered a MRI of the Lumbar Spine and, though some mild defects were detected, nothing was noted that could be causing the severe pain that I am experiencing. My doctor suspects neuropathy and I'm currently taking narcotic pain meds deal with all of my pain issues. The meds definitely help with my sleep and coping with the pain during the waking hours.

I've been on 50mg of Topamax 2x daily for the past 6 years of migraine prevention and it does an adequate job. I still have about 8-10 migraines per month, but luckily, Relpax knocks them out within 15-20 minutes.

I, too, take Cymbalta for my fibromyalgia pain. However, 60mg didn't help that much, so I take 1 60mg 2x daily. For the pain, I use to take Tramadol, which is a non-narcotic pain reliver. It helped with moderate pain, but not for the severe muscle aches. I've heard also that mild exercise is good for fibromyalgia pain; however, my pain, and yours it sounds like, was and is so severe that I can't imagine doing any kind of exercise. Not only would it hurt significantly at the time, but I would also pay for it the next and feel awful. My brother-in-law was my internist and the one who diagnosed me with Chronic Fatigue and fibro 17 years ago. When he recommended exercise, I literally dug my nails in his arm and told him not to advocate something like exercise unless he's been in my shoes. He never mentioned the word "exercise" to me again. I am now seeing a pain specialist for an idopathic pain disorder in the upper abdomen and take oxycodone. I was surprised when the doctor told me that he also treated fibromyalgia patients. He said there was a 24 hour patch, I can't remember the name, that is quite effective for fibromyalgia pain. Perhaps you could get one of your physicians to refer you to a pain specialist.

Since being diagnosed with POTS last September, I've lost about 15 pounds. In addition to POTS, I also have gastroparesis which often leaves me without an appetite. Combine that with tachycardia, I guess that's why I've lost so much weight.

I have suffered with CFS for 17 years and was just diagnosed with POTS last September. I do know that the fatigue I now have is much more debilitating than the fatigue that I had when I only had CFS. I can't compare my other symptoms with others who don't suffer from CFS, but I do know that I am quite ill and housebound or bedridden 4-5 days a week.

Hilbiligirl, I know exactly how you feel. Luckily, I haven't had to cancel any doctor's appointments due to my health. If need be, I will go to the appointment with no shower and no make-up. My husband is retired and is always willing to take me. However, that is not to say, there have been days that I definitely don't feel like going to a doctor's office and waiting forever to see the doctor for 15 minutes. Most of the time, I just force myself to go, regardless how bad I look or feel ( luckily, I rarely faint). On the other hand, I have postponed a lot of non-medical needs. I have needed a crown on one of my molars for 5 months, but I have never made the appointment because I have been feeling so bad that I just don't want to put myself through a grueling dental appointment not knowing how I will feel on the day of the procedure. I have also postponed setting up some counseling sessions. Since I have developed this idiopathic moderate/severe pain disorder which my doctors believe is neuropathy related, I am having more difficulty coping with all of my symptoms. Plus, my husband and I are having some marital problems due to me being sick constantly and that I do nothing to "contribute." However, I'm scared to make an appointment with a counselor not knowing how I will feel on the day of the appointment. Don't know about you, but on a bad day, I surely don't feel like sitting in a chair talking about my problems. On those days, I want to be in bed! It's a CATCH-22-- I need counseling, but I'm too sick and tired to go to the sessions. I don't know what the answer is. If anyone has one, PLEASE SHARE!