MightyMouse

When I've had bad brain fog, a few things seem to help. Not sure if it's science, voodoo, or just a placebo effect, but: coffee in moderation seems to help me enada (aka NADH) and a solid night's sleep, with ambien if needed. Nina btw, I use a study method called SAFMEDS...it's based on solid empirical study, unlike my suggestions above

Neg EBV, Neg CMV, Neg Lyme, Neg specific antingens for autoimmune disorders, yada yada yada the only abnormal blood work that I've had are: elevated sed rate elevated ANA, nonspecific and low total blood volume

I love that idea--I have a Paypal account that's linked to my savings. I use it instead of credit cards online. I've already made a donation this holiday via Paypal to a pet sanctuary that helped one of my cats---would love to do the same for DINET. Nina

Wow!!!! That sure is a lot of money to save!!! I may check into ordering from Canada myself as I think some of their prices are below my co-pay for a bunch of my "everyday" meds. Nina

Timbo, I used to get tremors before I had my spinal surgeries. However, I almost never have them now. I do know a number of people who've reported having tremors as an every-day symptom. Hopefully, some of them will answer you here. If not, you may want to cross-post your inquiry on the NDRF board. Nina

Nausea has been my most persistent daily problem... I've grown used to having a low level of it daily, so really it only bothers me now when it's intense or accompanied by GI spasms. GI functions are regulated by the autonomic nervous system, so nausea tends to be a common symptom with us folks. Welcome to the board, BTW. I also have a DX of Ehlers-Danlos III and NMH/POTS (NMH and NCS pretty much mean the same thing). Nina

If I'm remembering correctly, it has to do with the natural cycle of your body during the day--the hormones and body chemicals that elevate bp are at their lowest in the AM, upon waking. nina

Hi all, to those who joined the iGive network, a big thank you. DINET is up to nearly 100$ in funds raised through that site--which is a HUGE help to keep this site running and expanding as needed. Happy first night of Hannukah, happy holidays to all, and a healthier new year to each one of you. Nina

I used to get that all the time--I used to race 5k's. At the beginning of the race I would feel like I couldn't breathe--not my lungs, but my diaphragm felt...weird. It was particularly bad if it was warm outside (over about 78 degrees F). I only get this feeling now when I'm under heavy exertion. Nina

I have been fortunate to have good insurance for most of my life---and to live in a state that made it illegal to fail to cover a "pre-existing" condition. Of course, they don't cover everything...and somethings are woefully undercovered (like the surgery I needed last year where I ended up owing tens of thousands). I always have to remember that these companies are trying to make a profit, so that any way they can limit paying out, they will. Nina

Hunter, the technical term is "post prandial hypotension", which in turn, may provoke an elevated HR as the blood supply is shunted to the GI system to aid in digestion. It's not that uncommon for those of us with POTS. Nina

Like EM, I feel sick and exhausted. I often also feel nauseated. I get a head ache, and just feel unable to focus my attention. Nina

Hiya, I've take Celexa for about 2 years now. The first few weeks, I was VERY aggitated. We were staying with relatives at the time, and I was having trouble not snapping at people, and in particular, one relative who has some very annoying habits. All of that passed after I was at my final dose of 20 mg for about 2 weeks (so four weeks of side effects in total, because I was at 10 mg for 2 weeks, then bumped to 20). Nina

Oh...btw, if the member has the address, it will be displayed as an icon at the bottom of each post...so, mine has the little AOL guy below. Nina

Hiya, if you look up the profiles of each member, it will give you their AIM, MSN or ICQ addressess if the member has allowed it to be displayed. Other than that, I'm not aware of any other live-chat features built into the ipbhost system that host this site. Nina

Hey there Divine Spark--if you haven't read through the main parts of the DINET site (http://www.dinet.org), that may be the place to start to help you formulate your questions/thoughts. Also there are a number of other very good sites too... like NDRF (http://www.ndrf.org). Nina

My migraines came on in my mid to late 20's -- and I've had POTS/NCS since I was born, so nope, not for me. Nina

I don't have problems driving except in the heat of summer if my car has gotten really hot inside. I make sure it's cooled off before getting in. Other than that, I've never had a problem driving. Nina

I work F/T and go to grad school at night, working on my Ph.D. I've had times when I've not been able to work. Nina

Mestinon would probably be the indicated treatment if there is damage to the acetylcholine receptors...however, the only person I know who has taken this medication stopped after two days due to the side effects. Perhaps there are other treatments available...but I've not seen any info. Also, Mestinon's use for ANS problems would be an "off-lable" use. The drug is intended for use with those who have myasthenia gravis. Have you already tested positive for elevated ANA, a more general sign of an autoimmune process? (I know Michelle and I both share a history of elevated ANA, which stains pink and speckled, the least specific of the staining patterns). Nina

The only lab that can do the test is at Mayo Clinic. If your doctor feels the test is warranted, he/she can request it--however, knowing that you have the antibodies currently will not offer you any information that currently leads to any type of treatment. Same goes for EDS III (Ehlers-Danlos), which I have. Doesn't help me a lick to know I have it--all the treatments are the same as for folks with most other POTS/NCS variants. Nina

Justin, here's info on the drug: http://www.sandostatin.com

Just an FYI, I have also been diagnosed with Celiac/Sprue and eating gluten doesn't seem to trigger my migraines. I've had the blood work done, which was negative at the time but my GI doc said the test wasn't valid b/c I'd been off of gluten for more than 4 years at the time of the test. It requires prolonged gluten exposure to show positive. Meanwhile, he's told me I do have Celiac based upon a lifetime of symptoms. Also, my doc had be try an allergy elimnation diet, which did before I had the Celiac dx. Based on the results, I thought I was sensitive to wheat...little did I know I actually can't digest gluten. But, I did feel better for a while until I found tons of substitutes which I didn't know were also gluten no-no's like barley and rye. No wonder I felt really yucky. I've since been off of all gluten for years and my tummy and the rest of my guts thank me (until I do a major cheat on pizza, which happens at least once a year). I'm also under tremendous stress--I work f/t and am a Ph.D. student in Behavior Analysis (Ed. Psych & Spec. Ed.). Stress doesn't seem to trigger migraines for me, just the regular ol' tension headache from time to time. The only things that seem to be food triggers for me are the standard items they always mention: processed foods like cold cuts, smoked foods (meats & cheeses), etc. I know that if I indulge in some really yummy smoked bacon, I'm going to have a wicked headache later. My most consistent migraine trigger is my hormones: the day or two before my period I'm most likely to get a doozy of a migraine. Lastly, if my sleep schedule gets disturbed, that's been a consistent trigger for me as well. If you don't keep a headache diary, you might want to do so. It may help you find a pattern to your migraine's arrival. Nina

I think my BP was something like 160/100 when I was having a terrible migraine. My BP tends to run the gamut... it's high, it's low...and on rare occastions, it's even normal. You may want to keep a bp journal just to check that your meds haven't shot your baseline bp too high--that can happen and can be dealth with by backing off a bit (under medical care). Nina