potsgirl

I get up around 5 - 5:30 am, but that's probably because I go to sleep about 7 - 7:30 pm. I may be up that early, but I can't get out the door earlier than 8:30 - 9, preferably 9:30 - 10. I have a cup of coffee (I only drink caffeine first thing in the morning), drink a lot of water while I'm taking my meds, and after about 15 minutes can get on the computer and start checking my e-mail, etc.

I'm so sorry things are not going as well as you had hoped with the schooling. My husband is a teacher who deals with 504 plans, and I think I would bring up the reluctance of the Spanish teacher to work with J in her scheduling, if he decides he wants to try it this year. It is difficult to learn a foreign language when you're not there to practice it frequently. You may want to find out which textbook they're using in Spanish class and get a copy so that your son can start studying on his own so he has a head start next year.

Hope things get better. Has J tried a cup of coffee or a soda yet to see if that helps him wake up? Another thing to try is to have something very salty on his night stand with a big cup of water, and have him consume that before he even tries to get out of bed. That's one of the hints my doctor gave me.

I've struggled with constipation my whole adult life, and a couple of years ago, when I ended up in the ER because I hadn't gone in 9 days, one of the ER doctors advised Senna. It's very gentle on your system (at least it is on mine..) and now I can go almost every day. You can find the Senna (generic for Senobkot) in any large discount store - Target or Wall-Mart - or pharmacy. I take 2 in the morning and 2 at night. You may only need 1 or 2 at night. Just something that worked for me that might work for you...no prescription necessary.

I go through cycles where I have day/night sweats a couple of times a day. They may be "hot flashes" however, since I'm in perimenopause currently. I also have a fan on me, both on the floor directed at me, and the overhead fan. I have long, thick hair, and when I get into a cycle of sweats, it's enough to make me think about cutting my hair short!

Julie,

Wow, what a nightmare of a summer you had! And it is still ongoing, considering that Bruce is still in physical therapy (an assumption here) and working on trying to get back as close as possible to his "normal" functioning. Is he able to work now? I would guess not...

I'm so glad that both husband and son seem to be on the mend, and that you're getting a well-deserved break from all that trauma and stress. Keep us informed!

Jana

I tried Zoloft and couldn't tolerate it. I have been on Paxil for about 10 years now, and I'm not sure of the effect it's had on my POTS because I was diagnosed while on Paxil about 5 years ago. I do hear good things about Lexapro, and may try that sometime to see if it helps. I just hate to mess with my of my medications, because when I make changes it always takes me so long to get up to a therapeutic dose, and then I usually feel worse.

Hope whatever choice you make works for you!

Cheers,

Jana

I voted "other" and OH/POTS - the "other" is my diagnosis of small fiber neuropathy. Lots o' pain. I also voted "other" for possible causes, because many doctors believe that a virus can cause dysautonomia/POTS. They think I became ill after I got sick with a virus common to the southwest area.

There seems to be links between POTS/autonomic dysfunction and fibromyalgia and chronic fatigue syndrome. My doctor thought that I probably had both due to the POTS, or that at least they were hard to distinguish because the symptoms are so similar. I know that I've been diagnosed with chronic fatigue, and I think that's pretty common among our population (along with fibro).

I rely on Camelbak's Elixir - I get the berry flavor. It comes in a tube with 12 tablets that are scored. I use 1/2 a tablet in 16 ounces of water. Tastes good, low cal, and you can find it at places like REI or other sporting stores. You can also find it online.

jennyg97~

I'm surprised that no one has answered your question about Mayo/Rochester yet. That's where I went for all of my testing and I was also diagnosed there. The doctor I saw, who was wonderful, has now moved back to Scottsdale, AZ. I live in Tucson so I follow up with him there. Much warmer You may want to do a search on this site, because there have been lots of questions and info regarding Mayo Clinic Rochester/Scottsdale and perhaps even the Florida clinic in the past. If you have any specific questions, please feel free to PM me. One thing I really love about the Mayo system is that they work very closely with the other doctors that might be involved in your care, and you get answers from most of the tests very quickly. My Mayo doctor here (neurologist) found a blood clot in my heart about 8 months ago, and was able to get me in to a cardiologist there the next morning. Plan to be there for a week or so if you're just started your testing....they have a couple of hotels that have underground walkways to the main clinic (which is wonderful - we had a kitchenette in our room and just bought groceries for most of our meals), and they also have a lot of hotels where you would drive to the clinic. Cheaper, but less convenient.

Sorry I rambled on....good luck!

Jana

I really miss church, too. I'm going to try to go this Sunday, because I want a "home church" that I can attend for Christmas services. I really miss going on Christmas Eve. I used to go to that service - and others- every year until I got so sick.

Good idea on watching it on the computer. When I have made it to church, I just stay sitting when the other congregants stand up.

Have you had a tilt table test done yet? Sorry if I missed it somewhere in your post...If not, you can do a "poor man's tilt" at home. Get yourself a good BP monitor that also shows your heart rate, and then lie down flat for about 10 minutes. Jot down your numbers (it's easier if you have a friend who can help out, especially if your BP drops too low), then stand up slowly and take your numbers again while standing. It's interesting to take these numbers at 1, 3, 5, and 10 minutes to see what your numbers are.

The definition of POTS from my neurologist at Mayo/Scottsdale is when your BP doesn't go too much up or down, but your HR jumps by at least 30 points. If your BP numbers drop a lot, but your HR doesn't get up to 30 points over your lying HR, you probably have a dysautonomia issue called "orthostatic intolerance/hypotension". Some doctors believe that your BP can drop by 20-30 points, but if your HR goes up at least 30 beats per minute when you stand, you may have POTS or both. Give it a try and let us know what you get. Many of your symptoms could be POTS or dysautonomic dysfunction, but only your doctor can tell for sure. Like others suggest, please go to a specialist, where they should do this test.

Example: Lying, after 10 minutes - 95/65 and 60 heart rate (I have a pacemaker, it's almost always 60)

Standing, 1 minute - 75/62 and 118 HR

Hope this helps!

Jana

Bren,

What medications are you on? Anything new added or taken away recently? I was on some medication that really made my symptoms crazy and me along with it!

I had my sweat test done at Mayo Clinic/Rochester, and they put iodine and powder all over me, then slid me into a box-like structure when it gradually warmed up. I couldn't tolerate the test more than 5-10 minutes, so they didn't get an accurate picture of how I sweat when I do...It was unpleasant for me - but I'm very heat intolerant.

Bellamia,

I wrote you on Facebook, so please read what I put there. You know I think you're the best, and I'm sincerely sorry you are having to go through this. I continue to pray for you nightly!

Arizona Girl ~ Yes, I had the skin biopsy for small fiber neuropathy at Mayo Scottsdale and it came back positive. Am currently taking Neurontin for the chronic pain.

Issie ~ How interesting if that's the new pill Dr. G. was talking about. I was under the impression it was still in the testing stage and they weren't using it on humans yet. It still needed approval from the FDA. Did he say it was the pill that they were applying for approval with the FDA? What was it supposed to do for you, and how did it affect you?

Take care everybody, and you can PM or e-mail me if you'd like...

My OI/POTS fluctuated in the beginning. I moved to Tucson in 2005 for work in the archaeology field (not much of that in Iowa), and within three months was feeling pretty sick. I had to quit my job after about 10 months because of my symptoms. I slowly felt better, and took a physically demanding job with an Indian tribe along the Grand Canyon, where we helicoptered into the Canyon to record the conditions of the southern banks of the Colorado River, which the tribe owned. Did a lot of walking in 100+ temps. After about a year there, I got too sick again to work, and moved back to Tucson for a desk job with the county, which was a dream job for me. Made it about a year and had to leave that job. I haven't been able to work since, about the last 4 years.

Thankfully I applied for federal disability early, and after going to court, received it. I also was able to get disability from my job. I also am on Medicare, and I know I am blessed to have all of these things. Having a dysfunctional autonomic nervous system has led to other problems for me, like issues with my heart, and small fiber neuropathy, to name a few.

I really hope that your doctor is right, and that it passes quickly for you. I can recommend that keeping up with some sort of exercise program may be very helpful in keeping your symptoms on the lighter side. Don't give up, and if you can, go see a Mayo Clinic/Cleveland Clinic/others are listed on the front page of the Forum

Cheers,

Jana

I agree with Arizona Girl and starby. You may have several things going on...yes, they can all be caused by dysfunction of your autonomic nervous system, but some of your symptoms sound like they could be something else, too. I have small fiber neuropathy, and get a lot of pain in my feet/ankles/knees and my hands/wrists/elbows. They call it the "stocking effect." They can hurt so badly that even a sheet can cause you agony. I'm finally on some pain medication that helps the pain be tolerable. It's called Neurontin (Gabapentin is the generic in the US), and after trying Lyric and Oxycontin, it's worked the best for me.

Also, the pain in the other parts of your body may indicate large fiber neuropathy. Have you been tested for that? If you can go to an autonomic specialist, that could help you pin down which tests you need, and get you on an individualized treatment plan.

Good luck to you ~ Cheers,

Jana

I have a swollen, hard lymph node on the left side of my neck. It's always there, it doesn't come and go. My doctor thinks it's no problem, and that it's probably my allergies that are causing it. I think it's odd that I don't have the problem on the right side of my neck, too.

I'm so glad your son had such a good first day back to school. My continued positive thoughts and prayers are with you and your son!

Ernie~

13 TTTs? My gosh, why so many? And by the way, it's so good to see you on the Forum again!

Cheers,

Jana

I had an appointment at Mayo Scottsdale with my neurologist about 6 weeks ago, and he told me that they have a new drug that they're testing for POTS patients, and that they'll be doing human trials with this drug this coming year. I think I may qualify for it, from what he said. I'll let you all know when I hear an update.

misstraci,

I've just started the ALA for my small fiber neuropathy, and I'm not sure if it's helping yet or not. I've also begun taking Gabapentin (Neurontin) along with a very small dose of oxycodone (only in the morning, when my pain is the worst), and that seems to be helping the most. I couldn't tolerate Lyrica or Oxycontin (yes, these are prescription meds, but they are helping me.)

Hope you find some supplements that work for you. I'm about to start taking CoQ10, D-Ribose, and 5HTP along with the Alpha Lipoic Acid soon, to see how those help. I guess we really just have to experiment with our individual health issues to see what works for us.

Good luck!

Issie,

So nice to see you back and with a lot of information to share. I feel the same frustration in that the doctors I've seen so far haven't seen too interested in getting to the root cause of my POTS. I also get the "well, you have POTS and we're not sure why. These are some things that may be helpful, but basically just try to adjust your living style and get used to it." They only tested me for one suspected cause - amyloidosis, which is very difficult to detect. Hopefully that's not my problem, because it's a nasty thing to have....

Hope others have had more positive experiences, although it is tiring to keep trying new doctors and new meds so much of the time!

I also get some "racing thoughts" during some of my adrenaline surges, and I think that the surges help cause some anxiety. I have also taken Xanax or Klonopin to help with these, but not too often. Still, they really do help. Perhaps if you tried a small dose of Xanax when you get into this state, you can see if it helps. Then you'll know if you're also having some anxiety attacks along with the surges.

Good luck!

I also struggle sometimes with talking and get that cough. I also have some trouble finding the right words on days that I'm feeling pretty bad. Sometimes I just have to speak in almost a whisper, and tell my boyfriend I need to just be quiet. He's very understanding, luckily. Sorry I don't have any cures!