potsgirl

Hi Becky,

I have also read that about 25-30% of people with dysautonomia can't work. I would love to go back to my old job - I loved it and miss it every day. I had to leave shortly after my POTS diagnosis about 2 years ago. Unfortunately, I have not gotten better over these past two years, but I can't tolerate either Florinef or Midodrine. I'm trying licorice root next.

Take care,

Jana

A big thank-you to Mountain Girl and all the others who've replied. You are all my friends and it's terrific!

Cheers,

J

Rene,

You are such a wonderfully kind person. Thanks so much for all of the support you've already given me. You are a true friend.

Cheers,

J

Hi Emma,

Welcome to the Forum! This is a great site for you to ask questions, read up on information, and just to get some good, solid support. As you mentioned, you've already seen stories similar to yours in these posts, so you're certainly not alone. There's almost always someone on the Forum who can relate to what you're going through.

I have several of the same symptoms you have, including the lumbar spine issue - although I now have 'progressed' to osteoporosis (-3.1). My BP also falls dramatically when I stand, and my HR shoots up, but not nearly as high as yours! (60 laying to 130 standing). It seems you're on some good, appropriate meds, though.

Again, welcome!

Jana

Hi Ana,

My neurologist/POTS specialist at Mayo thought of the disease first, and because of my heart problems and other symptoms, they think the amyloidosis would show up in my heart. I'll be going to a cardiologist at Mayo to have the biopsy done.

Cheers,

Jana

I get very fatigued from any kind of travel, and always have to rest the day after I arrive, but I don't know if it would make gallbladder symptoms worse - I would think the primary cause of that would be a change in your diet flaring it up. Were you symptomatic before your trip? If you continue to have these problems, it certainly wouldn't hurt to talk to your GP and possibly have some testing done.

If you've been reading other posts about GB testing, you know that these tests are not that accurate, and you have to go with your intuition. All of my GB tests came back negative, but they took my gallbladder out due to my symptoms, and it was totally dead.

Good luck!

Jana

The suspicion for amyloidosis came up because I have cardiomyopathy, dysautonomia, and carpal tunnel syndrome - although the carpal tunnel was years ago. These are three of the main indicators of amyloidosis. Mayo MN tested for it in March, but the tests were inconclusive. My ANS specialist there told me if there were any changes in my heart condition with the next echo (the one I had three weeks ago), we would need to go ahead and do the heart biopsy. It's not the biopsy that scares me, it's what happens if that's what it really is....

Thanks for your responses, all.

Cheers,

Jana

I had the same biopsy test done on my abdominal area, too, when I was last at Mayo's. That test was inconclusive...

Hello All~

I've had a really stressful last couple of weeks, and am asking for positive support and/or prayers for my mother. We leave Friday for Iowa to be there for her back surgery on Monday. They're having to rebuild her lumbar spine with a 'cage', and it'll be a risky procedure for her. She's 80 and has Parkinson's and other medical problems.

Then, my recent echo showed another heart problem, diastolic dysfunction. This means that the heart muscle is too stiff to relax enough in the heart's 'relaxation phase' and so blood can pool in your lungs and other parts of your body. When I went to Mayo MN last March they suspected amyloidosis, which is a buildup of abnormal proteins in the body. One of the main causes of diastolic dysfunction is amyloidosis, and the treatment for that is chemo. Ugh. It's very similar to cancer. I have an appointment for a heart biopsy at Mayo Scottsdale (AZ) on October 6th.

Anyway, please send out positive thoughts for my mother on Monday. Thanks for everyone's support once again.

Cheers,

Jana

Hi Leslie,

Thanks so much for making your post much more readable, it really helped! I want to give you a very warm welcome to the Forum, and know that this is a great place to come when you need support and answers. It looks like everyone else has covered the comments I would have made, which is basically directed toward getting yourself an appointment at Vanderbilt with one of their specialists to get the most accurate diagnosis you can. That way, you're working with doctors that are familiar with dysautonomia who can set up the best treatment plan for you.

You have a lot of symptoms that many of us have here, but yours certainly sound extreme and you've had a long, hard haul of it. I'm sorry you've been suffering so with so many maladies. I'm wishing you the best of luck in unraveling everything that's going on with you so that you can live your best life possible. Rest, eat a lot of salt, drink tons o' water and electrolytes (NUUN is a very good electrolyte tablet that you just drop in your water). And keep in touch - we'll be thinking of you and hoping you get the answers you deserve.

cheers,

jana

Hi Erika,

Many times when you look at your prescription info or on WebMd.com, rxlist or drugs.com, they won't list all of the side effects. If you 'google' the drug and the side effect, you'll see many more than on those other sites. I typed in 'Zoloft nausea' and it was listed as a side effect numerous places. 'Zoloft chest pain' also brought up plenty of listings, including the statement that having chest pain with Zoloft is a rare and serious side effect. I would contact your prescribing doctor before taking any more....Hope you're feeling better soon!

Cheers,

Jana

I had a very bad case of food poisoning some years ago from chicken, and while most food poisoning cases don't last longer than a couple of days, I was still having diarrhea and cramps a week later. They had to check out my colon to see if I'd done permanent damage.

However, as Kayjay said, if you have a fever, especially one of more than a degree or so, I'm betting you have a gastro inflammation or bacterial/viral issue. The flu doesn't cause stomach symptoms, it's usually confined to the chest and head. Nice to know that reading all of that H1N1 stuff taught me that there is no such thing as a 'stomach flu'.

Hope you feel better soon, and keep the liquids going! If it doesn't pass in another day or so, I'd see your doc.

Take care,

Jana

Maxine,

Kudos on thinking of the children while you were suffering so much pain and not frightening them. I hope your pain is better today, but I'm going to echo Broken Shell in that you should get in to see your doctor and check everything out. Better to be safe than sorry (to state a vastly overused cliche!)

Be well and take care!

Jana

Hi Selah,

Welcome to the Forum! You'll find a lot of information and support here.

I'm unfamiliar with a lot of the testing your son is going through, but others here will likely have more medical advice. I can suggest that your son have a Tilt Table Test performed, to see what happens - most autonomic specialists seem to think that this is one of the best tests to determine dysautonomia. Also, I have no idea where you're located and what the medical facilities are like around you, but if your son's case is pretty complicated, a lot of people end up going to a major clinic that specializes in autonomic nervous system disorders - Mayo Clinic in MN, Cleveland Clinic in Ohio, and others. Doctors are listed on the home page of this Forum to help you find someone reputable that understands this disease, if that is what your son is suffering from.

Again, welcome!

Cheers,

Jana

Hello Bellamia~

I wish I could help you more, but I think your main question about 2 wheelchairs has to be answered by your insurance company. It all depends on them and what they will and won't approve. I'd give them a call and see what they say, after you explain your situation. If they don't allow 2 wheelchairs, they may allow you to rent one until your motorized one gets there. If they won't do that, then I think that most hospitals will rent them out if necessary.

Good luck, sweetie!

Jana

Maggie,

Thanks for your thoughtfulness and thinking of us forum members.

I've only been able to stay on Florinef for about 10 days at a time. I get very painful migraine headaches and just feel sick in general. This was on a .05 dosage. I never could stay on it long enough to raise my dose. Midodrine doesn't do anything for my low BP, and for me it works about 2 hours, and then I crash. It could be a great drug for you, though.

Cheers,

Jana

Is that BP when you're sitting, standing, or lying down? How much of a change do you get going from supine to standing? I think it's the drop that really makes you feel bad. I'll have 100/65 when supine, but standing it'll drop to 70s over mid-50s, with my pulse going from 60 to 100-130, and I feel absolutely horrible and almost pass out. I have read several places that anything under a BP of 90/60 is considered 'hypotensive'. It depends on the individual and how symptomatic they get from the highs or lows. I really feel sick when I get into the 60s over high 40s.

Cheers,

Jana

Dear Leslie,

I would like to read your story, but I get lost when I try to read it. Is it possible to break up the narrative into more reader-friendly paragraphs? Welcome to the Forum.

Thanks,

Jana

Good luck! I'm so happy that you have such supportive parents to help get you through this difficult time. But you're going to make it ~ I can tell. You're getting to work, and focusing on what's necessary. That's half the battle right there, to keep going, day by day, until things start to get better and better. You can do this!

Cheers,

Jana

I'm sorry for the loss of your cousin and the grieving that you're going through, and wish you peace.

Like others posted before me, I think that your being in the US will make a major difference in getting your medical issues diagnosed and treated appropriately. It's difficult to know what was actually afflicting your aunt and cousin - it might not have anything to do with your health.

I also believe that sometimes things happen for a reason. You're grieving over the loss of both your cousin and the fact that you didn't know him. I think this gives us the opportunity to make things different in the future. You can reach out to your other relatives in Iran now and work on feeling more connected to all of your family.

Best wishes,

Jana

Good luck! It's great to see you back and posting. We've missed you here. Hang in there, you've got our support.

Cheers,

Jana

As long as your tat won't be too big, I think the shoulder would be a good place to have it done. One word of advice to any out there thinking of getting a tattoo - ankles are a BAD idea (so is the brilliancy of a 'permanent' toe ring). Let us know how it goes!

I try to eat as healthy of a diet as I can: low fat, low sugar, high salt and tons of water/NUUN hydration tablets with electrolytes. The main variant from my doctor's advice to yours is with the cardio workouts. My doctor wants me to try to move as much as possible, concentrating on the lower body, like yours. So I do both aerobics (I also have osteoporosis of the spine so I try to walk a lot) and some weights. I try not to nap every day, but when I'm really fatigued, I do. I also try to get as much sleep as possible at night, between the tossing/turning some of us suffer from.

Like Janey, I tell people (only if they ask) I have a central nervous system issue, keeping it generic, so people usually just gloss over it and don't ask many questions. This isn't a big problem for me, though, as I rarely get to many social events.

Cheers,

Jana

Hi Eric,

I was also going to suggest taking your sets of readings at the same time of day, under the same set of circumstances...food/no food, water/no water, caffeine? Make sure all of your variants are the same. Also, you probably want to take more time between readings. I usually lie down for at least 5 minutes supine before I take a reading, then I stand and take readings at 1, 3, and 5 or 10 minutes. This is what they do at my cardio's office. If you wanted to, you could go supine again and take it after another 5 minutes to see where it settles. I think your readings would be more accurate.

Could you try that and let us know what the numbers are then? One of the characteristics of dysautonomia is the fluctuating BP and pulse, although yours look a little odd to me (the drop of 108 to 83 in 2 minutes, and the pulse going down there - but I'm hypotensive). Certainly you'll want to go over your numbers with your doctor at your next appointment to be sure.

Please update us if you do new numbers, or what your doctors say. Good luck & cheers,

Jana