samannran

My legs feel very heavy, ache, and look a horrible purple color. I'm so thankful for support hose!

Yes! I woke up extra early and alternated the treadmill & Pilates every morning. I miss working out so much!

I am worse than I was six months ago. I have steadily gotten worse over the last several years.

I've been battling dysautonomia for eight years now. I wasn't given a prognosis about getting better or worse. Since being diagnosed, other organs have been affected. I now have pure autonomic failure, and I can only eat soft foods because of gastroparesis. I know some people do recover, & my neurologist told me it's rare for people to develop PAF. Unfortunately, I was one of the few. I hope you have a full recovery. 

I have fibromyalgia. My neurologist feels it goes along with the PAF. I just got back from my rheumatologist appt. I get shots of 4 mg of Decadron every six weeks for the fibro and the coat hanger pain in my neck and shoulders. I also take Cymbalta, Tizanidine, and Tramadol along with my other meds for PAF. The shots help for five weeks. I'm still in pain, but it's tolerable. The shot are painful but worth it.

Hi. I have taken Diltiazem for many years now along with Coreg. This combo is the only heart meds I can tolerate. All others drop my bp too low. My experience has been a positive one.

Hi. I have taken Diltiazem for many years now along with Coreg. This combo is the only heart meds I can tolerate. All others drop my bp too low. My experience has been a positive one.

I'm one of those people that starting fainting as a teenager. However, I started progressing in my twenties, and it hasn't stopped yet. I'm 35. I know people who develop dysautonomia in their teens are supposed to have a better outlook, according to research, but that's not always the case. I'm sincerely happy for those who go into remission. I just wish I was one of the lucky ones.

Do you have gastroparesis or slow motility issues? If so, it's taking a long time for your meds to get absorbed and through your system. I have gastroparesis, and it takes an extremely long amount of time for meds to kick in.

Hi, I'm sorry you are feeling so discouraged right now. It is understandable. I don't have mast cell issues that I know of, haven't been tested, but I have PAF. I can relate to your feelings. It's hard to be young and deal with needing a wheelchair. I'll be 35 tomorrow and hate that I need a scooter to go out with my family. For me, PAF didn't come on immediately. I started fainting at 14, was diagnosed with NCS at 27. Then I started progressing, so the diagnosis got OI added to it, then PAF as other systems started failing. I am worse than last year and wonder when the progressing will end. It's normal to mourn for the active life you have left behind. I sure do! At the same time, it helps me to accept what my life has become and live it the best I can. That's easier said than done, but once I accepted my life for what it is, I became a happier person. Also, I watched a close friend die with ALS at 37 after battling it for five years. That changed my outlook on life. I hope it gets better for you. This is a difficult illness to battle. It robs us of our normal and makes us change every aspect of our lives.

Yes this happens to me often. Your bp was low at those numbers. When this happens to me, my bp is usually low. My hubby or daughter elevates my feet and rubs my legs to help get my bp back up to a better number. If noone is around, I lie down, pray, and wait it out. It is scary. I talked to my neurologist about it, and she said that's the autonomic failure. When the bp lowers, less oxygen gets to the brain.

I took Zoloft for two months and felt terrible the entire time. Low bp, dizzy, and I felt like I was walking around in a dream. I was switched to Lexapro & gained ten pounds almost immediately. I took Effexor for a few years and had good results with it after the first few days of severe nausea. I recently was diagnosed with fibromyalgia and switched to Cymbalta to help with pain. So far, I haven't experienced any side effects.

I was diagnosed with fibromyalgia about a month ago, but I've had symptoms for years. I'm in a very bad flare right now. Ugh

I don't think you are being pushy. You know your body better than anyone. If you feel this is a test that is necessary, then ask for it and be persistent. Hopefully you will find some answers.

My neurologist filled out an in-depth prescription stating the reasons a scooter was medically necessary. I am a teacher, and she wrote on the prescription that I would need the scooter for work at times. She also wrote that I needed it to complete household chores. Her office contacted the medical supply store that my insurance uses, and they came out to measure me. I have a $1500 durable medical equipment coverage, and I can get a scooter paid for every five years. My doctor also explained that I couldn't maneuver a wheelchair because of muscle weakness. She also explained why i couldn't stand for more than ten minutes. My scooter was paid for the first try, no appeal. A regular prescription may not work. It is definitely worth trying to get them to pay for it. A scooter will give him more independence. I felt strange using it at first because people do look and wonder, but I'm fine with it now. Also, if you don't have a disabled parking placard, look into getting one for him. It's nice to have in the summer because you can get in the AC quickly!

I have the four wheeled type. My battery lasts a long time. I have used it for four to five hours at a time without needing recharged. It never even got in the red. So far, I haven't had any trouble with battery life. My doctor wrote the prescription for the scooter to have a basket & it's a good place for my purse. I am thankful for being able to go places with my family.

I have an Invacare travel scooter that works well in grass & gravel. It comes apart and fits in the trunk of my car. It's too heavy for me to lift, so I have to have someone with me to load, unload, and put it together. My hubby or daughter can do it with ease. I really like it.

It sounds interesting. I wonder if there's an alternative for people like me who can't stand ten minutes without fainting.

I was recently diagnosed with fibromyalgia. My rhuemotologist said that fibro is pain in the tender points, joints, & widespread pain throughout the body. My feet hurt so bad when I first wake up. He asked about my feet before I brought it up.

Hi Caroline. I have pure autonomic failure also. I got my gastroparesis diagnosis last August & just recently was diagnosed with fibromyalgia. I'm a fainter, too. Before I progressed, I had a diagnosis of NCS & orthostatic intolerance. I've never been diagnosed with POTS either.

My insurance paid for my scooter after my neurologist filled out an extensive prescription for it. She was very thorough in explaining PAF. I got it paid for on the first try, no appeal. I am still able to walk a little bit, but I use the scooter for grocery shopping. My cardiologist didn't like the idea, but he's not the one unable to do anything. I still walk some too.

I agree with Reen that I won't do another TTT. It's no fun to have my heart speed out of control while my bp bottoms out, and I flatlined. For some patients like me, it's a test that documented my symptoms & explained why I felt so bad. If you want to be tested, be persistent.

Hi. I have PAF & can't take midodrine because I also have heart valve problems. The stockings help me some, but I can't wear them in the summertime. I sleep on a wedge that elevates my head, but I haven't noticed any difference. I have gastroparesis because of PAF and understand the nausea. I throw up, too. I hope you find some relief for the many symptoms that go along with this illness.

My doctors treat them separately because I had dysautonomia long before MVP. Also, MVP runs in my family, but I'm the only one with dysautonomia.

I agree that we are all different. I have PAF & heart disease. A little caffeine in the morning and afternoon raises my low bp and helps me manage the day. I couldn't tolerate midodrine or Florinef, so caffeine is my medication along with many others. Like everything else with us, it's trial and error to see what works best for you.