jlmahon

The ONLY exercise I can do without increasing symptoms is water jogging/strength training. I purchased one of those flotation belts you attach around your waist and jog from one end of the pool to the other. The flotation belt keeps me at shoulder depth and is also a safety precaution in case I faint. I also do various strength training exercises in the pool. I never thought I would be able to exercise again until I went to PT and they put me in the pool for exercise. I feel amazing when I'm in the pool and also when I'm done. The problem for me on land appears to be overheating and position changes. The pool eliminates both of those issues. Maybe water exercise would help you?

I have been on SSD since 2002 and have not been officially reviewed yet. I did receive a questionnaire a few years ago that I had to complete and send back. I received a letter shortly after saying I did not have to do anything further at the time. I'm not sure if it depends on the reason for disability or if it just varies. I would think it would be very difficult to take someone off SSD once they are receiving it. My lawyer told me never to worry about losing it.

I'm not pregnant yet but hope to be soon. I added florinef a few months ago and am doing much better than when I was just on midodrine alone. My pcp and gyn don't see any problems with taking both and trying to conceive. My neuro, on the other hand, thinks I am being selfish and not concerned and that I should just suck it up and go off all meds. I'm just wondering if others here have been on both meds together through a pregnancy. Thanks!

Have the docs tried all possible antibiotics? I wouldn't think a steroid would help an infection - I would think it would make it worse if it was an actual infection, as steroids suppress the immune system, therefore keeping the body from fighting the infection. I used to get sinus infections all the time until I started cleaning my nasal passages at least twice a week. I purchased one of those neti pots and use a saline solution to irrigate and clean my sinuses. I haven't had a sinus infection in years. Have you tried this?

I get hives due to autonomic dysfunction. The only thing that really works for me is an antihystamine called xyzal. It makes me sleepy though so I only take it if I'm home. My hives seem to occur in the evening anyway so I usually take the xyzal at dinner so I'm itch free for the night.

Don't give up! You need to find a doctor who will listen and help. Are you near a major hospital system like Cleveland Clinic? I was going from one doc to the next before I found Dr. Grubb in Toledo. Maybe you could get an appointment with him? Don't let all this get you down. It's frustrating when you don't know what's wrong, especially when you can't find a doc to help you.

My symptoms (bp dropping, nausea, fatigue) have been flaring up the last week or so. What's really new and bothersome though is I seem to be sensitive to smells - things like food cooking and gasoline give me headaches and make me want to vomit. What is going on? I've never been this sensitive to smell before. Anyone else?

You can definately have both mito and dysautonomia. I'm told I have both. Lack of energy due to mitochondrial dysfunction can cause nerve dysfunction. Are you going to have a muscle biopsy?

A GOOD doctor would welcome his/her patients to see other doctors. I wouldn't go back.

Not sure but....maybe when your digestive system is breaking down food, there is less energy provided to your head and that results in a headache? When I was getting low bp after eating, Dr. Grubb told me it was because of having less blood and oxygen pumping to my brain due to digestion. Maybe you could try eating several smaller amounts throughout the day and see if that helps.

I rarely get viral infections but when I do, I drink plenty of tea and oj. If I get really congested, I take mucinex, as sudafed makes my heart rate speed up. I don't know how many others this happens to, but, sometimes I get a really a fever and sore throat from exhaustion. I'm not sure why. I hope you feel better.

I don't remember anyone specifically telling me that losing weight can cause autonomic problems. My PCP (very intelligent) doesn't have any other patients with dysautonomia but he has a good theory. His impression is that when the autonomic system goes out of balance, it is unable to manage fluids properly. Whenever I go into a big flare, my weight drops pretty significantly in a short time. Obviously, 5 punds in a few days has got to be fluid. I remember Dr. Grubb telling me that anemia can also make dysautonomia worse. We already have problems with blood flow so the stress of low blood cells and less oxygen is a real stress. I think losing weight quickly can be a stress on the autonomic system but I don't see how it can cause autonomic problems.

Hi Angela. You sound just like me 8 years ago. I was an HR Professional, trying to manage work while feeling terrible. I was actually let go a week after my FMLA ran out. It was either be at work every day or no job. I have to say.....I thought I'd miss working but I really don't miss it one bit (except for maybe to social aspects). It's nice not having to be part of the rat race and actually having time to put my health first. Recently, I decided to turn my hobby into a business. No, I probably won't make nearly as much money, but, I can work as much as a want and not have to put up with work politics. The thing is, without having free time, I probably wouldn't have had the time for a hobby, and would have never discovered my true passion. Just think of all the time you'll have for you!! Start thinking about your upcomming freedom!

I was doing really well until a few days ago. My body decided to go haywire and act up in all ways possible (blood pressure drop when stand, small fiber neuropathy pain, etc). I passed out at PCP's office so he sent me to the urgent care center for IV Fluids and to get some labs. Today I'm resting due to exhaustion from the major dysautonomia flare...not to mention I can't do much without my blood pressure dropping. While I don't expect anyone to understand how I feel, I don't expect people (expecially close friends and mom) to judge me. My mother called today and said her legs hurt all the time but she still goes about her life. A while later, my friend called and said it's no big deal since it's not life threatening. Do they think I can magically feel better? So frustrating. Apparently, my quality of life isn't important and I should just force myself to do whatever even if I pass out?! I'm generally a happy, energetic person but sometimes people make me feel like dirt. I'm sure you all can understand.

Hi everyone. I had a horrible experience yesterday afternoon. All I did was go out to pick up a few things at the store and I ended up at the ER. The last thing I remember was going through the drive thru to get an iced tea and taking a maxalt (migraine med). I don't remember how I got there, but, I woke up in my car in the parking lot of a hospital trembling/shaking from head to toe. I could barely function but called my mom and she ended up calling security to find me in the parking lot. They assessed me in the ER - lab work, CT scan, orthostats - and told me my potassium was a bit low - 3.2 - but should not have caused me to have no memory of what happened or the trembling. They did orthostatic bp readings on me and weren't impressed because my bp only dropped I think 15 points from sitting to standing and they said they weren't concerned. The whole time I was there my bp was all over the place - 104/48, 138/58, up and down. As you can imagine I'm still freaked out! I did black out once before when I was driving before I had the autonomic dysfunction diagnoses but that was over 5 years ago and it was nothing like this. I do remember shaking a bit then but nothing like this. My calves are cramping really bad today which make me think potassium still low. I did eat a banana with a large glass of orange juice right before I left the house yesterday. Maybe my potassium was much lower, and with the gastroparesis, it took time for the banana and juice to benefit me? Then I wonder about the maxalt as I took it shortly this happened. I know that some of us have more severe side effects to meds. The docs didn't think that was likely because this was my 4th time taking it. I do know one time I took it, my pulse ended up dropping pretty low. Now I have to go for EEG on Monday to rule out a seizure. Has anyone here ever experience severe trembling/shaking with low bp?

I forgot to mention that Provigil has been very helpful to me too. When I get a day where my bp is running on the low side, I get very sleepy. I take 200 mg of Provigil on the morning and am able to get through the day feeling rested, not feeling like I need to close my eyes.

Interesting.....I remember Dr. Grubb saying the vagal nerve was responsible for many of my symptoms but don't remember him saying much about the muscle tightness. I have episodes when my bp will stay low for days and my muscles will get really stiff. I always concluded it was lack of blood flow to the muscles that was causing the stiffness. Warm baths tend to help.

Epogen has been a miracle drug for me. Back in March, I couldn't stand for longer than 2 minutes. Now I'm out shopping, and able to do some exercise. Not only did it help my bp, it also helped improve my energy level. I've had to stop the drug for a few weeks because my hematocrit got too high and I really noticed a difference. Epogen comes with its risks but it's worth it to me.

Rachel & Julie, I had a colonic transit study & manometry study done which showed a problem with motility. I've had past x-rays done which showed dilated bowel loops which indicates obstruction, but I had no mechanical obstruction - therefore condition called pseudo-obstruction. I do take miralax 2x per day but sometimes it makes me too full and nauseaus. Domperidone usually helps with the stomach motility but not the constipation part. I wish zelnorm wouldn't have been taken off the market as that did seem to help. I know there are other drugs used off-label for motility issues (tried erythromycin) and I'm trying to find some possibilities.

I've been dealing with gastroparesis for a few years now with an exacerbation in symptoms over the last three months or so. I've suspected a problem with colon motility for a while and today that was confirmed, as I was told I have a condition called pseudo-obstruction, which basically means the intestines are working very slowly. I'm told both the gastroparesis and the pseudo-obstruction are most likely due to the autonomic dysfunction, which we still don't know the cause (autoimmune??). I've been on epogen injections for low bp and fatigue for aboat 5 months now and am doing extremely well as far as energy and bp related problems. I wish I could get my digestive system under control. I've lost 18 pounds and am having problems keeping my potassium levels in check. Domperidone helps some but I'm still only getting about 800 calories a day. Anyone here have similar issues and take meds that help?

Hi Angela. I can understand your frustration with gastroparesis. It's definately no fun. Just wondering...do you know what your gastric empyting scan results were? I think it's something like half of the contents are supposed to leave the stomach in 90 minutes.

I went to PCP on Thursday because I've been having a problem with drinking fluids lately. Whenever my gut acts up as far as the gastroparesis and the intestinal dysmotility, I feel like I'm in for a bad few weeks. Well, my PCP did an xray to rule out an obstruction and said that was ok and told me to go home and continue with miralax 2x daily to keep things moving in my digestive tract. I asked him if he could order IV fluid and he said that while I appeared dehydrated I should be ok. He said that if I was really badly dehydrated, my blood pressure would be really low (it was 100/60 in his office). I reminded him it's been around 118/75 (good for me I think because of the epogen). Yesterday, I could barely get out of bed. I ended up calling Dr. Grubb's office and they told me to go to ER because I wasn't drinking much and hadn't urinated in over 24 hours. I really hate going there as I'm sure you all do. The doctor there wasn't really helpful (a jerk actually!!) and asked me how I knew so much about my conditions. They took blood and said my electrolytes and kidney function studies were normal so I wasn't dehydrated. They wanted a urine sample but I tried and wasn't able to give one. I told them I hadn't urinated since the day before. They gave me a liter of fluid and sent me home. I am feeling a little better today. I'm trying to slowly sip fluids to hydrate myself. They seem to be staying down so maybe I'm on the upswing. I just had to share my frustrating experience.

I started having severe tooth decay around the time I started having my first symptoms. I was 3 at the time and my dentist told me I wasn't caring for my teeth like I should but I know I was brushing and flossing at least 2x a day. I ended up with something like 10 cavities at once. Since then, I've had on average 3-4 cavities per year. My doctors have told me it's due to lack of saliva due to nerve damage. I used to take the med salagen but didn't like the side effects. I try to get my teeth professionally cleaned 3x a year now and that seems to be helping. I also use biotene toothpaste for dry mouth.

Hi Helen. Do you take essential fatty acids (EFA)? High cholesterol runs in my family so I'm guessing that's why mine is somewhat high. I started taking EFA's a few years ago to help with inflammation and overall health. My bad cholesterol actually went down and my good cholesterol went up. EFA's are supposed to help with cholesterol and in my case it looks like they helped. I started taking EFA's after a medical professional in one of my support groups introduced me to them. She had dozens of scientific journal articles on the benefits of EFA's. What I think is interesting is that there have been studies done on people who consume diets high in EFA's (salmon, for example) and they have been found to have very low incidences of heart disease. Maybe you could talk to your doctor about taking EFA's?

I've had migraines for years now and they are becomming more severe. I take Keppra as a preventative and it seemed to be helping up until recently. I can't take Imitrex for attacks because it causes a severe increase in blood pressure. I was told to take vicodin for the pain but that doesn't really help much at all. I theorize that my recent exacerbation of autonomic symptoms is causing the increase in migraines but my neurologist doesn't think so. It makes sense to me that constant changes in blood pressure would affect the blood vessels but I'm no doc. What helps those of you with migraines? diagnosed with small fiber neuropathy(2003); autonomic neuropathy (2003); mitochondrial cytopathy (2002); complicated migraines (2002); gastroparesis/small bowel dysmotility (2005)