fighting4health

Congrats! Going from having annoying symptoms to having treatment options is a good thing.

I use thermals layered under my clothes and 2 or three pair of thick winter socks along with lambskin lined shoes (uggs and lamo make some cute clogs). I wear thick water-proof gloves to work and insulated boots. I have a boot dryer at work so my boots are warm and ready to go in the morning. I love the heated shoe insoles too! A heated mattress pad is a must and a heated blanket for the sofa makes lounging incredible! Add a faux fur-lined hat along with some tylenol and ultram for the pain at night and I'm set. I also run the heater like it's going out of style. The only thing I wish I had is an automatic start on my car to heat it up before I get in.

My MRI was fun (like being in a space ship). The techs were super nice and even gave me a blanket. Unfortunately once I got home my temp had dropped to 94.1 and I've had no appetite and have been seriously nauseous for hours. I've got a date in 2 hours and have to figure out what food or meds will make me functional enough to make it. Thanks all for your support. I hope I get an upswing soon.

I spontaneously got asthma-like symptoms where I couldn't speak a full sentence without coughing or getting hoarse. It lasted for several months. I did a pulmonary test that came back completely normal (shocker). My doctor prescribed a steroid inhaler anyways and it took care of all those symptoms. I was able to wean myself off of it after about 6 months and am totally fine without it now. No rhyme or reason for any of it.

I am feeling horrible again. I slept 12 hours yesterday and almost did it again today. I'm missing out on things I'm supposed to be attending. I feel like I've hit rock bottom again. I'm trying to fight back so I made an exercise chart and looked up some old recipes that suit my diet. Hopefully with a little effort I'll start to break through this and feel better. I am so glad I've got this site. Knowing you all go through the same things is the best support ever. I'm going in for my first MRI in 2 days. I've got the usual feelings we get for a new test. I really don't expect anything to be found because 99.9% of the 10 billion tests I've done have been normal, but it would be nice if they found something that could be treated or at least have a name put to it. It would be most awesome if they found something that doctors have heard of! Previous to my official diagnosis I, like most, had doctors suggest that I get treated for anxiety. If treatment for anxiety can wipe out all my symptoms sign me up!! I'll be the first in line for hard core inpatient treatment!

There are some possible side effects to the B12 injections. I got one injection and got crazy anxiety and insomnia (symptoms that I never have). Seems most people do great on it, but if you get negative side effects contact your dr.

Topamax was a miracle drug for a few months for me. I was started on a small dose and worked up to a larger one. I had minor weight loss and eventually started getting GI side effects and had to quit taking it. I think Topomax is the drug that made me not able to sweat (which was one of the possible side effects). I didn't notice it until I realized I was getting hot in temps that I was usually comfortable in. I got bad heat exhaustion on it once 'cause I couldn't sweat in high temps.

I was diagnosed with small fiber neuropathy last year. I have had annoying and painful symptoms for over 10 years now. Most of it comes in the form of stabbing, burning, or numbness in my feet during and after I exercise. Sometimes I get it in my foot if I've been driving for more than 30 minutes. I also get my arms "falling asleep" if they've been in the same position for a few minutes. It's the main reason that keeps me from exercise. I know if I did exercise more I would feel so much better as a whole. If you have this too has yours gotten worse? How much worse how quickly? Mine gets worse every year. Have you found anything to stop or reverse the progression? Have you found any treatments or drugs that help or haven't helped? What side effects have you encountered from certain drugs?

Thanks everyone for your input. I think I will do the 24 hour monitor next time I see my doctor.

I have Raynaud's and small fiber neuropathy. When those really act up I drop things a lot and have trouble writing.

I used to go when it got bad before being diagnosed. Now I know that sharp chest pains and other things are normal (for me). I've also acquired some of the drugs they give in the ER. I use phernegan suppositories to stop vomiting (ER would give it in an IV) and that lets me keep fluids down so I don't dehydrate. The dehydration would get really bad to where I would hallucinate and just lay on the floor close to unconsciousness. Now I've got everything I need at home and don't have to wait to treat myself. It's helped with previous ER visits to ask what meds they are administering and asking the docs what they recommend doing when at home. They have given some great treatment info to me.

I made valedictorian in high school and cum laude in college. I didn't know I had dysautonomia at the time, but I always studied on my bed or laying on the couch. I reserved all my weekends in college to study on the couch all day long. It was the only way I could absorb the info. I've always been a slow reader and have had trouble remembering what I just read. I was always the last to finish an exam, but usually got the highest score. In my career now I have to write a short report every day. Writing the date and day is always the most time consuming part. I can never remember what day it is! I guess my best advice is be patient and take it easy. It's okay to not know it's Friday or can't find your keys when they're in your left hand. We're not stupid, just a little quirky.

I just went to my primary care today to get a referral for an MRI of my brain (several docs have suggested I get one). She asked if I had had or wanted to do a 24 hour monitor. I think it just monitors and records your heart rate for 24 hours. I told her what I knew my heart rate did and wasn't really concerned since us dysautonomics all have unusual pulses. Should I do the monitor or is it a waste of my time and hers?

That's funny. I was just reading posts on the forum and avoiding taking a bath. About 10 minutes after the bath I'm usually okay, just a little more tired. It's the time before it that I work myself up and put it off, and of course the actual bath isn't my favorite. I sometimes go hypothermic if the water or room temp is too cold (below 70). I also have to be careful because I can't tell hot from cold most of the time on my feet. Warm water feels soooo good though.

I can relate. My numbers are not as drastic as yours, but my BP and heart rate go up and down in random ways. Sometimes they are way up when I first wake up and sometimes they are way low when I'm exercising and then other times they are the opposite. In general, when I stand in place my pulse elevates a lot, but most of the time everything is pretty random with no pattern.

Every morning I feel like I just got hit by a bus. My BP and pulse will be drastically different every time with no rhyme or reason. Good thing is once I'm fully awake I realize that a bus in fact did not run me over. Then I gather up all the motivation in my little soul to get up and am always very thankful that I did.

Having this disorder has been very humbling for me. I have learned to accept that modifying plans and being creative about my options is a must to live a fulfilling life with dysautonomia. Ordering takeout or delivery and lounging on the couch or renting a movie might not be what was planned but can be a fun option that everyone can enjoy. Respecting your body's needs and focusing on what you CAN do can make a positive difference in your physical and social health. Hope this helps.

I get dizzy, "surreal" vision, and see black spots when I play volleyball. It's kind of like being temporarily drunk. When I rest after playing things usually go back to normal pretty quickly.

Makes me wonder why certain doctors go into medicine if they don't intend to help people.

I have Raynaud's and small fiber neuropathy. I've always been in a lot of pain from the cold, even if it's air conditioning or the fridge at a grocery store. I do best in the low 80s. Cold makes me shiver and my body temp drop. I bundle up for outdoors with layers of thermals and jackets and use foot warmers or battery powered socks. I grew up and still live in a really warm climate where triple digits are constant for 6 to 8 weeks every summer, so maybe I'm just used to it.

My neurologist (and dysautonomia specialist) recommended magnesium and calcium twice a day for a preventative and naproxen and phenergen for a treatment. Phenergen is an anti-nausea med, but evidently helps for migraines too. I used to take midrin because it worked so well, but she had me discontinue it because it was causing rebound migraines (I was getting 3 or 4 a week). Sure enough when I discontinued midrin I got migraines less frequently. Hope you find the info you are looking for.

My hair falls out too. I've gone blonde to try to hide it. I think mine might be hormone related because I've noticed changes when going on and off birth controls, but nothing makes it the way it used to be. All my hormone levels are stable though and an endocrinologist couldn't figure it out either. I even tried rogain for women and all it did was make my scalp really flaky.

I started going to doctors for the specific symptoms at age 19. Over the years I got diagnosed with symptoms (migraines, neuropathy, raynaud's, etc.) and was able to enter those into an Internet search engine. I found dysautonomia on the Internet and saw a specialist to get formally diagnosed at age 28. I saw 2 podiatrists, 3 rheumatologists, 2 vascular surgeons, 1 endocronologist, 1 ob/gyn, 2 neurologists, and then finally a 3rd neurologist that solved the puzzle.

My dad oftentimes tells me about articles he read and the vitamins they recommend, or studies unrelated to dysautonomia saying I should do this or that for symptoms. I just tell him each time that I have a rare condition and need to stick to my specialist's plan then try to change the subject. I don't ever expect for him to understand completely and have come to a bit of peace with that. I see a therapist about once a month and more often if needed. It definitely helps my stress levels and keeps me strong. I talk about my symptoms and dealing with my dad in sessions and it helps a lot. I certainly don't think your condition can be cured with therapy, but it could help cure the frustrations with your sister.

I think the name of the neurologist in Stanford was McQuillen. He doesn't specialize in dysautonomia, and I was going searching for a diagnosis at the time. They are very good there, but he's not your guy if you're looking to be treated for dysautonomia. Dr. Yan-Go put me on a high salt, high fluid, low sugar, low fat diet. I am supposed to take more rest breaks and nap every day. She also recommended yoga, water resistance training, and strengthening my legs and abs. I'm also supposed to avoid aerobics, avoid extreme temperatures, avoid hot showers and bathe sitting down. She took me off some meds I was on for migraines and has me using my anti-nausea med (phernegan) for migraine treatment. We also switched the time of day I am taking my meds and she also has me taking magnesium and calcium twice a day as a migraine preventative and it has amazingly helped out a tremendous amount. She's a character because she doesn't like to be interrupted, but welcomes questions at the end. She may come off as harsh and unapproachable to some people, but she actually was very concerned about me and encouraged me to call her with any questions later. She even went out to the waiting room after our initial consult and spoke to my friend about my condition. She has dysautonomia herself and gave me tips that worked for her. I don't think they have TTT there. I remember her saying something about them cutting funding for their dysautonomia lab or something of the sort.