DeGenesis

I'm really starting to sound like a drug pusher, but it's times like these when benzodiazepines (Short term, 2-6 weeks max. Of course it always ends up being long-term, doesn't it?) come in handy. As always, just a personal opinion. Plus the drug route inhibits the development of coping skills. To be honest, adapting to a new environment, whether it be school, work, or housing is always very stressful, even if you don't have a medical illness. You have some extra challenges to be sure, and I hate to give you such cliched advice, but here it is: Don't be so hard on yourself.

I realize this is a very old thread, but this really hits the nail on the head. A lot of chronic, complex, multifactorial illnesses like POTS, CFS/ME and GWI (Yes, I went there.) seems to start in the same way: - Genetic predisposition - EDS for example. - Environmental stress - emotional, chemical, bad diet, stress from school, work, family etc., overuse of stimulants and alcohol to cope, physical trauma, car accident, surgery, TBI, etc. I know the "environmental stress" idea is controversial, but not all stressors are self-induced, and it's far cry from saying that someone caused their own illness, and even farther from saying that they are perpetuating it. In fact, in many of these situations the participant has no control. Exposure to insecticides, for example. - Followed by the tipping point, or the straw that broke the camels back, if you will. It is almost always an infection of some kind. Even a simple ear infection will do. Then the immune system goes haywire.

http://chronicsorethroat.wordpress.com/ This blog is written by Hip from Pheonix Rising. It's about chronic sore throat and a myraid of other issues he and others have which he believes is caused by an enterovirus. Dr Chia, a CFS/ME researcher, found enteroviruses in something like 85% of CFS patients, but in a very low % of healthy controls. What's more, when Dr. Chia exposed mice to the bisopsies of enterovirus-infected CFS patients, most of the mice became infected. I believe the virus in question is coxackie B. Again, it's just one hypothesis, among hundreds, but it's worth some investigation IMO.

An SSRI would not be helpful for sleep, unless your sleep issues were due to anxiety. Do you want something to help with mood and sleep, or just sleep? For sleep, I really like low-dose tricyclic antidepressants. The key is low-dose. At their recommended doses for depression they have loads of side-effects and would make POTS worse. At low-doses, they act mainly as histamine receptor antagonists, kind of like Benadryl without all the side-effects. I really like low-dose doxepin, but doctors are more familiar with amitriptyline (Elavil). I mean like really low-dose. Amitriptyline is (was) used at doses of 100-150 mg for depression. 5-10 mg can suffice for sleep. Might be worth bringing up with your doctor. Doctors are using low-dose quetiapine (Seroquel) often for sleep these days. I don't like it for POTS because even at low-doses it affects alpha receptors, which can worsen POTS.

You are all really friendly. Not often do I see this level of caring and compassion on an internet forum. Just sayin'

Mmm.. I know your case is super-complicated but try and pin down some solid diagnoses for your autoimmune disorders. There are a lot of new drugs coming down the pipeline treating diseases dominated by T cell involvement, some with B cells.. In the mean time I'm glad Humira is working for you, but TNF-a is by no means the whole picture. It's times like these I wish we had rituximab..

Who is a good specialist in or near NY state or Michigan, or in that general area of the country? I live in Ontario and all ways to the US lead through NY state or Michigan. Sorry I don't mean to derail your thread, but I agree with some other posters that you shouldn't put your eggs all in one basket. If you go traveling, try and see more than one specialist.

I think the problems some people experience on anti-fungal meds maybe due to the eradication of non-pathogenic beneficial yeast strains such as saccharomyces boulardii, which keep C. diff and other bad bacteria under check. I don't think it will be a problem if you are just treating it with diet, but if you are using nystatin or other anti-fungals, consider supplementing with S. boulardii. Out with the bad and in with the good.

Fair enough. Some people swear by Candex, although I can't speak to it.

It's sister drug, mirtazapine, which has similar pharmacological properties, was the thing that finally sent my POTS into overdrive and landed me in the hospital. After a single dose. It has a very long half-life, which will make you drowsy for much of the next day. There are much better sleep aids, IMO. It's a very good antidepressant though. Too dirty in its pharmacological properties for sleep. What country do you live in? I can suggest some drugs or supplements that you can suggest to your doctor.

I wish for more information on this also. I don't snore, but sometimes I wake up in the night gasping for air. Most of the time though it occurs as I'm falling asleep, often at the same time as a heart flutter.

But hey, now we have a generation of youngsters being raised on anti-psychotics because of the pediatric Bipolar fad. Who knows what the consequences of that will be.

Acutely SSRIs improve mood, but dull emotions. They aren't quite the same thing. SSRIs can set off a hypomanic episode in susceptible individuals, but it rarely lasts. In the first few weeks of taking an SSRI, they can actually reduce serotonergic tone by activating autoreceptors, which reduce serotonin release, but these eventually become desensitized. That is why SSRIs take a few weeks to start working to reduce anxiety, and some forms of depression. Other types of depression (So-called "Atypical depression".), can respond immediately. Sorry if I sound like a know-it-all. It's because I am, about SSRIs at least . I was placed on an SSRI when I was just 7 years old, and have been taking them for most of my life. I dare any doctor to argue with me about the pharmacology of any SSRI. I know them well. Much do I rue the retardation of my emotional development by there use at such a young age. I was among the one of the first cohort of pediatric patients to be placed on an SSRI.

How do you know you have a yeast overgrowth? I'm not sure a negative reaction to nystatin is good evidence of that. In any case, a friend of mind thinks that he has yeast overgrowth as well, and took nystatin. Eventually he developed symptoms of C. diff and had to come off his diet and nystatin. It seems that yeast may play some kind of a protective role in gut dysbiosis.

Mmm.. SRRIs reduce the intensity of emotions in a dose-dependent manner in all individual. They do this by inhibiting the serotonin transporter, which removes serotonin from the synapse. When neuronal synapses are saturated with serotonin, and there is nothing to remove it, there is less room for serotonin levels to go both up and down. I think it depends on your baseline emotional intensity and level of self-introspection. SSRIs are dosed too high for most and a dose of, say, Prozac 10 mg instead of 20 mg, will leave some of the serotonin transporter available to remove serotonin from the synapse.

I was wrong. It turns out that people with CFS have shorter telomeres than healthy control. So yes, people with CFS do age a little faster. I know this thread is about dysautonomia, but there are many now in the CFS and community that believe that CFS is a manifestation of dysautonomia. There is definitely a large symptomatic and research overlap between dysautonomia and CFS/ME. Here is the video: https://www.youtube.com/watch?v=nyyjRdbvPj0 Telomere talk begins at 14:30, but the whole lecture is very interesting.

Take a look at SIBO and low-FODMAP diets.

How are things going Sarah?

Thanks for the warning kitt. I live in Toronto, Ontario and I'm looking for a doctor who can help me piece everything together. I have amassed a tremendously long list of diagnoses, which have accumulated since childhood and I KNOW that there has to be something to tie it all together. I just haven't found someone who has been interested in me or has enough skill. I'm pretty sure a smart doctor could boil it down to a couple of autoimmune disorders, as well as gut dysbiosis and MAYBE some kind of chronic infection (enteroviruses are looking like key players right now in the CFS/ME research community). Health-care in Canada is not terribly, but it's not a wonderland either. Don't be fooled. BTW, has anyone tried desmopressin? It's next on my list of drugs to investigate.

SSRIs are beneficial in hyperadrenergic POTS because they indirectly reduce adrenergic signalling. It takes some time for this to occur and things get worse for a few weeks before they get better. SSRIs also increase the standing vasoconstrictive response. They reduce neuroinflammation which is associated in CFS/ME. It comes at a price though. There is very little evidence that SSRIs cause weight gain directly, but they induce apathy in many people. I suppose that could cause dietary changes. SSRIs also make it impossible to sustain romantic love. There are many articles on the internet about SSRIs and love. I do not recommend them to anyone in a relationship. Generally, they tone down all emotions, not just the bad ones. Here is a good paper that summarizes this. A sample from the paper: "Most participants described a general reduction in the intensity of all the emotions that they experienced, so that all their emotions felt flattened or evened out, and their emotional responses to all events were toned down in some way. Very common descriptions of this phenomenon included feelings of emotions being ‘dulled’, ‘numbed’, ‘ flattened’ or completely ‘blocked’, as well as descriptions of feeling ‘blank’ and ‘ flat’." http://bjp.rcpsych.org/content/195/3/211.full If you are looking for an antidepressant that does not inhibit your personality, Wellbutrin is an excellent choice. It increases libido and orgasm intensity in most, does not impede emotions, causes a sense of energy and well-being, and can sometimes even increase motivation. Oh and it helps a lot of people with OI and POTS, depending on their subtype. Don't take any of this as medical advice (I've been warned. ). This is just the culmination of my personal experience, anecdotes from others, and research accumulated from journal articles.

Thank you kitt and IceLizard for alerting me to this other separate catecholamine test. I live in the GTA, but I might travel to Buffalo to see a dysautonomia specialist there named Dr. Svetlana Blitshteyn. Maybe she can do this test.

Zoloft is an SSRI. Wellbutrin is sometimes said to be both a dopamine reuptake inhibitor (DRI) and a norepinephrine reuptake inhibitor (NR), but in reality its DRI properties are so weak that it is basically an NRI. It isalso a nicotinic acetylcholine antagonist, which is responsible for its efficacy as a smoking cessation aid. Wellbutrin is often given in combination with an SSRI to restore libido and reverse emotional blunting caused by the SSRI. The combination of Zoloft and Wellbutrin was sometimes nicknamed "WellLoft" by psychiatrists because of their synergy.

When I was admitted to hospital, I had a 24-hour catecholamine urine test. I was told it was normal, although I have never seen the results. Problem is, I was laying down the entire 24-hour period. I sat up once and a while to use a urinal, but I never stood, so I don't know how valid the test was.

There's not much to be scared about. Just don't lie down within a few hours of taking it. If it doesn't help, or you can't tolerate the side effects, just move onto something else. There are plenty of options.

It's worth a try, some people swear by it for depression and fatigue. Adaptogens like Rhodiola are hit and miss for most people. I suggest sticking with it for a few weeks before making a judgement. Most importantly, don't buy a crummy extract from Wall-Mart or a drug store. High-quality extracts can be ordered online or found at health food stores, and there is plenty of talk in various forums on which extract is best. I like to keep my drug and supplement regime as simple as possible, and Rhodiola didn't provide enough of a benefit to keep it as a staple supplement.