jlmahon

I happened to ask my cardiologist about why I tend to feel like I'm hyperventilating when flying, as I know it's not due to nerves. I've flown for as long as I can remember and have never been nervous about it. Well, he said that the changes in pressure and oxygen affect the autonomic nervous system. At least I understand why I get that feeling now. He told me that some people with autonomic neuropathy/dysfunction benefit from using oxygen while flying. Has anyone here used oxygen while flying?

I had my first injection of procrit on Friday. A few hours lately I was severely fatigued and chilled. Yesterday my glands in my neck swelled up and I had symptoms of a stomach flu. Could this be a reaction to procrit? I normally get fatigue, chills, and gastrointestinal problems but this episode seems diffferent. Has anyone else had a similar problem with procrit?

My husband and I planned a trip for next weekend several months ago when I was feeling much better. I'd still like to go as the weather is warmer and I really need to get away. Even if I spend my time sitting by the pool and nothing else. Problem - standing in an airport security line. The last time I stood in an airport security line, I got a severe attack of nausea and almost passed out and had to leave the line. We almost missed our plane. Do you think a note from a doctor explaining my problem with standing would help? I'm really hoping if I can just get through the security line I can somehow walk to the gate. I usually don't have problems with walking although with my health lately I'm not sure. Problem two - symptoms when flying. I'm not sure if this is due to pressure changes or changes in oxygen level but I hyperventilate when flying. Does anyone else get this and know what I can do to to alleviate the problem? Also, does anyone have a problem with needing to urinate every 15 minutes when flying? It seems like I can't keep fluids in me when flying. I think it would be beneficial to sit in a front row where I can stretch out and be near a restroom, but how do I go about that when flying on an airline without assigned seating? Any suggestions would be appreciated!

Well, my insurance company didn't give me a hard time at all about taking procrit. I was really surprised, as they have been fighting me on just about everything else lately. I'm getting my first injection tomorrow. I've been feeling very poorly so I'm really praying this helps. I'm wondering if the fact that I'm anemic has been contributing to the worst 2 months healthwise that I can remember. My hemoglobin is 9.4, my hematocrit is 31, and my ferritin level is 2. My old primary care physician somehow overlooked my anemia for at least a few months now. I had lab work done in January and the levels were about the same as my recent ones - and he gets mad when I ask for copies of my lab tests!! I'm so glad I switched to a new pcp. My new doctor is really wonderful. He's not very knowledgeable about dysautonomia but said he plans on researching and talking with my other specialists. For not really having much experience treating autonomic problems, he really had some helpful suggestions for me. What I'm wondering . . I know procrit is used to treat anemia, but since I'm using it to increase blood pressure, will it still work if I'm anemic? I'm thinking it probably won't have an effect on my blood pressure until the anemia is corrected. Also, I did some research on procrit and found articles from scientific journals regarding an increase in heart attack and stroke risk for people on this drug. I know all meds have possible complications but this did kind of scare me. Has anyone here on procrit had any major problems with it?

As a former human resources manager, you definately do not want to mention your illness. Your resume/job application should only include information regarding your experience, education, and anything else that would be considered relevant to being able to perform the tasks of the job. You could wait until you are offered the job and then ask for any accommodations you might need. The Americans with Disabilities Act (ADA) prevents discrimination based on disability. As long as a company employs 15 or more people, the law protects people who need reasonable accommodations in order to perform the essential tasks of their job. Reasonable accommodations include a flexible schedule, frequent breaks, specialized equipment, etc. An accommodation would be considered reasonable as long as it doesn't cause undue hardship on the organization. An example - a cashier is unable to stand due to POTS. Standind at a cash register for an extended period of time would not be physically possible so the cashier is able to sit on a stool while working at the cash register. This would be considered reasonable because it does not interfere with performing the job, and it does not cause any hardship on the employer. Here are some good websites regarding the ADA: http://www.usdoj.gov/crt/ada/adahom1.htm http://www.disabilityinfo.gov/dig-public/p...entFolderId=500 http://www.jan.wvu.edu/media/raproc.html E-mail me if you have any questions and I'll try to help. Good luck with your job search!!!

I had really nasty foot pain up until about 6 months ago when it eased up. I had been to a rheumatologist, podiatrist and an orthopaedist several times before geting an answer. The orthopedic doc finally did an MRI and found fluid around my toe joints for which he didn't have an explannation. He doesn't understand autonomic problems really well, but said it's possilbe that fluid is accumulating in my feet and causing the pain. I did get orthotics made by a podiatrist and that has seemed to help a lot. I also use a pain relieving gel called Biofreeze that I get from a chiropractor. I find that Biofreeze works better for me that a prescription gel containing lidocaine. I hope your foot pain gets better. I do know another person with autonomic dysfunction who also has a problem with foot pain. Maybe it's more common with autonomic dysfunction. Lucky us!!

Hi all. I am currently seeking a new pcp in my area (Buffalo, WNY area). For those of you who live in my area, who do you see for primary care? I'd like to find someone who's familiar with autonomic problems, or at least willing to learn. Dr. Grubb is wonderful, but I can only see him once per year. My current pcp is unwilling to prescribe treatments (IV, epogen, etc.) as recommended by Dr. Grubb. My insurance (HMO) makes it very difficult to fill prescriptions by out-of-network doctors, so it's really a hassle. It would be so much easier to see a pcp who's willing to consult with Dr. Grubb. If anyone has any suggestions for docs, please let me know.

Maxine, I'm really sorry to hear about you mother. It's really difficult losing a parent. My father passed away almost two years ago and I still think about him all the time. I will keep you and your family in my thoughts.

I forgot to add that I really like using Electromix. It's a powdered mix you can add to water or fruit juice or whatever you like. It's made by Alacer, the same company that makes EmergenC. You can find this stuff at health food stores and some drugstores and grocery stores. I buy mine online at drugstore.com as I don't really shop much in stores lately.

Do you like yogurt? When my gastroparesis gets bad I can usually tolerate yogurt. My doctor told me to drink Ensure or Boost. I use my blender to make shakes containing a scoop of vanilla protein powder, a banana, 1/2 cup of vanilla yogurt, 2 tbsp peanut butter, 1 tsp honey, and 1 cup chocolate almond milk. I blend this all together with ice. I like to make fruit shakes too. I'll freeze fruit (or buy frozen) and blend it with juice, or juice and yogurt. I hope your gastroparesis gets better soon. Do you think your doctor can give you IV fluids if you can't drink enough?

Madeline, I have been diagnosed with mitochondrial cytopathy based on lab tests and muscle biopsy results. My lab tests showed I had elevated lactic acid levels, elevated CPK (muscle enzyme). Lactic acid is a byproduct of exercise, so it is expected right after doing something like aerobics, jogging, etc. I had a moderate level of lactic acid for no reason. My doctor then ordered a muscle biopsy which showed abnormalities consistent with mitochondrial disease. The links that Sunfish posted are really excellent sites. Do you think you have a mitochondrial disorder?

I am wondering if anyone here has noticeable weight fluctuations. My weight fluctuates daily between 110 and 118. I notice the weight change mainly in my abdominal region. I'm not sure if this is due to changes in blood pressure or what. This is somewhat annoying, as a pair of pants may fit in the morning, but be too tight by afternoon. I've asked my doctors but they don't seem to know why. I have gastrointestinal dysmotility, but I don't think that is the reason. Any ideas??

Hi Sandy. I was just thinking how nice it would be if there was a support group in my area (Buffalo). I belong to a support group for mitochondrial disorders (another one of my diagnoses). Where is Lynbrook?

I refuse to use any chemical cleaners in our house. A while back my sister-in-law gave me a recipe for an all-purpose cleaner and I have to say it works better than any chemical cleaner I have ever used. It contains natural disinfectants and you can custom design the scent. Here's the recipe: 2 tsp borax (natural mineral found in laundry aisle) 4 tbsp vinegar 2 tsp all-purpose liquid soap (I use Dr. Bronner's) 20 drops essential oil in scent of your choice (I add lemon to my kitchen cleaner, lavender and tea tree for my bathroom) Add borax to a 32 oz spray bottle. Fill bottle 1/4 full with hot water and shake to dissolve borax. Add vinegar, soap, and essential oil. Shake to combine. I use this cleaner for virtually everything. You don't have to worry about contact with food because it's all natural. We save so much money too. I will never go back to chemical cleaners. Here is a recipe for a homemade fruit and vegetable wash: 1 tsp baking soda 1 tsp citric acid 10 drops lemon extract Add above to 32 oz spray bottle and shake to combine.

I think it was about 6 weeks after the decision was made that I received my first check. Do you have a lawyer helping you? If so, maybe he/she could make a call for you.

Hi Jacquie. Exercise seems to have a bad effect on me too. I know it's supposed to be good but it's hard to exercise when we end up feeling worse. I wonder if you get dizzy on the treadmill because of the upright position? I've noticed in the past that my heart races faster when I use a treadmill but not when I use a stationary bike (the one where your legs are out in front of you). I've found the best exercise for me is water therapy. My doctor had sent me for water therapy for my foot pain and the therapist had me doing aerobic activity in the water - walking, treading water, "bicycling" - and I had no problems at all. I'm actually planning on returing to water therapy in the near future. Dr. Grubb wants me to try and strengthen my legs to keep blood from pooling and water therapy is one of the few things I can do without increasing my symptoms. Jenn

Morgan, Would it be possible to get a referral to a specialist who deals with autonomic issues? I'm asking because I went through years of being told I had panic disorder, depression, etc. It really bothers me when doctors label us with mental health disorders. It's one thing to have a mental disorder and be treated for it, but, to be labeled with one is just wrong. I'm just thinking it might be a good idea for you to get the real diagnosis on paper in case you end up having to find another primary care doctor. I hope your current doctor sticks around longer to help you, sounds like he is helpful to you. Jenn

Hello. I was diagnosed with small fiber/autonomic neuropathy based on tests (sudomotor reflex test, tilt table test, skin biopsy) done at the Cleveland Clinic. I've been struggling with major swings in blood pressure and heart rate, gastroparesis, air hunger, migraines, and nerve pain for the past 3 years. Thankfully, I found Dr. Grubb last year. Finally a doctor who really understands!! He's been very helpful to me and is trying to get me on epogen. Unfortunately, I haven't been able to tolerate other meds, or they haven't worked for me. I'm sure others here can relate. Anyways, I look forward to "meeting" everyone here. Jenn