DeGenesis

I know this is zero consolation to you, but I know many people who were afflicted with CFS/ME (of which POTS was a symptom) in the middle of their prime. One of them is now in his mid-30s, and has suffered since his mid-teens. We know so much more now than we did back then, and he has improved. He was recently promoted, and is continuing his education despite heavy brain fog.

Living with dysautonomia is not an easy life. You may recover, or you may not. You may improve, or you may not. All bets are that you will get better.

Look at it this way, you have no choice in the matter. You didn't ask to be afflicted with this illness, but you have been, and no amount of dwelling on it can change that.

I am 22, and my life has been hard from the beginning. It doesn't help when things are already going badly for you before you are even born. Long did I spend pittying myself, especially in my late-teens. All of my lost dreams. I had my life planned out. Nothing would stop me. But something had. That was the wasted time. That I had control over. If I had spent that time working towards a positive solution to my issues, I would be in a much better place now.

Suffering is relative. It is subjective and only you know how it feels to be you. I am not trying to patronize you. You don't need to lie to yourself. POTS *****. It ***** to have POTS. There is no choice but to deal with it. You might come out a lot stronger.

Do any of you have a hiatial hernia? There is a connection between the vagus nerve and a hiatial hernia. Eating will increase gas in the colon and temporarily worsen your hernia by pushing up the stomach, potentially further impacting the vagus nerve and causing autonomic dysfunction. Sometimes the vagus nerve can become impinged with a hiatial hernia.

If you have POTS with CFS/ME, GET is not advisable and CBT is just plain stupid. Pacing is OK. Don't over do it or you will set yourself back, as TCP said.

If you don't have CFS/ME, give exercise a try and see how you feel. If you have "Primary POTS" (does this even exist?), then I see no issue, but if you have POTS secondary to another condition, then overexerting yourself could cause a flare-up of that condition, thus worsening POTS.

For myself, elevating the head of my bed and staying upright for as long as I can during the day is exercise enough. Sometimes I go for a short walk. An upright position activates the renin-angiotensin-aldosterone system and increases blood volume. This assumes you actually make aldosterone. If you had a good response to Florinef, I doubt this approach will be helpful. If Florinef gave you high blood pressure and you had to stop, I would give this a shot.

I developed POTS a few years after "catching" CFS/ME.

0.025 mg (25 micrograms, or one quarter of a 0.1 mg pill) once or twice a day doesn't usually affect blood pressure and can reduce norepinephrine levels significantly

Elevating the head of my bed has not only made mornings WAY easier, it's by far the most effective treatment for POTS that I've found so far.

Currently I am at 7". Any more and my lower back aches.

Elevating the head of your bed also increases your blood volume.

Gastroparesis? Certainly this is a known complication of dysautonomia and POTS. Cisapride, a prokinetic, was an incredibly effective treatment but it was pulled off of the market because some dim-witted doctors prescribed it with an antibiotic that greatly amplified its QT prolongation effects.

Prucalopride is available in the EU and Canada and it is virtually side-effect free. Low-dose erythromycin is sometimes used as a prokinetic in the US.

Take a look at foods that delay stomach empyting. Fats and indigestable carbohydrates (solulable and insolulable fibre, FODMAPS) greatly slow down digestion.

gofl1, nice. SIBO is often a complication of gastroparesis. I suggest that anyone with digestive issues investigates SIBO seriously.

If you have SIBO, avoid disaccharides like sucrose and lactose in addition to the foods I mentioned above that slow digestion.

I would become familiar with your rights, which will vary depending on where you live. I live in Ontario, and an employer can not fire you due to a disability as long as accomodations can be made such that you can perform your job adequately. Nor can you be discriminated against based on a disability.

It's my experience that people don't really care that you have some rare disease. They will generally zone out unless you say you have cancer or something like that.

The best way I've found to help people understand my POTS is that gravity causes blood to pool in my legs and that sometimes I need to sit or lay down for a short while. They go wide-eyed for a moment or two, but then they seem to accept that explanation and are sympathetic. I never mention POTS, or get very technical, although you may have to have a physician write a letter to your employer, but you seem more concerned with your perception among your co-workers.

Yes, Tyler has done the 23 and Me testing. I have gradually been adding supplements. He is a methyl user. I have never heard of doxepin. Tyler takes the extended release clonidine. This seems to work well for him until he gets sick with an infection. Then his sleep cycle gets messed up again. I will look up doxepin and see how it works with neurotransmitters. Tyler has high Norephrinphrine, Glutmate levels, and low GABA levels.

Encephalitis or any other condition of chronic brain inflammation would be expected to cause high levels of excitotoxicty, due excess production of quinolinic acid. This can mimic high levels of glutamate. Take a look at the kynurenine pathway for more information. I'll see if I can't produce some links tomorrow.

There is one hypothesis in CFS/ME research that even after the cause of the initial inflammatory response is eliminated, such as a viral infection, a vicious cycle begins in which inflammation begets more inflammation.

There is a great free thyroid summit going on. http://thethyroidsummit.com/tom-obryan-dc-ccn-dacbn/ I think DeGenesis is right about inflammatory conditions. Trying to figure out what is causing the inflammation is a start. I truly believe in looking at the diet.

does inflammation cause POTS?

Inflammation is the result of immune system activation. Inflammation is generally not the cause of disease, but the result of whatever is causing the inflammation, as badhbt points out. Gut problems and autoimmunity are possible causes of chronic systemic inflammation. They might be interrelated.

The answer to your question is therefore both yes and no.

Many have found that low-dose doxepin (Silenor) is great for sleep maintenance. At 3 mg doxepin is almost exclusively an H1 receptor antagonist, which induces and maintains sleep. At higher doses it would worsen POTS due to alpha-1 and muscarinic receptor antagonism.

Have you run his 23andMe raw data through Genetic Genie's methylation profile?

You have already been diagnosed with an autoimmune disorder (Hashimoto's), and you have a history of inflammatory conditions. You may very well be right that there is something else going on.

If you are not clenching or grinding, or resisting the tempation to do so, then it is not bruxism.

It may be a localized tremor, secondary to high levels of epinephrine and norepinephrine. Do other parts of your body feel tremulous, or do you feel jittery?

Unrelated, but SSRIs can sometimes cause dyskinetic movements like these.

Rachel,

My friend was on minocycline for issues associated with her ulcerative colitis and ended up with C. diff because she was on the mino for so long. I just wanted to tell you so you can look out for ealy symptoms if he does need to go back on it. She thought her symptoms were part of her colitis and they figured it out after the C. diff was very bad.

Not only do antibiotics put you at risk for C. difficile, they mess up your gut flora (dysbiosis). Yes, even if you take probiotics. Anecdotally, it seems like those who took a lot of antibiotics for things like ear infections when they were young end up with IBS and related conditions later on. There is an investigation ongoing now looking at the impact of dysbiosis in chronic inflammation in CFS/ME.

Sometimes antibiotics are a necessary evil, and I would never encourage anyone to take their usage lightly.

Minocycline and doxycyline can be taken at sub-antibacterial levels to treat chronic inflammatory conditions. See "Oracea" for the treatment of rosacea, as an example.

I was actully going to ask our cardiologist about Minocycline. My son was on it for a little short period of time but I did not see any improvement. There are more studies out and I'm wondering if he needed a bigger dosage to make improvement. Other antibiotics are used in conjunction with IVIG.

BTW--- Do you know what may have caused your condition DeGensis?

I don't know. I've had mild symptoms of orthostatic intolerance since I was young. Then (from another thread):

I developed severe fatigue during a bad "flu" approximately 4 years. The fatigue never resolved. I did not recieve a diagnoses of POTS until this January, when I was hospitalized for a week because I couldn't get out of bed without HR ~160 and immediate pre-syncopy.

Minocycline and doxycycline are active against Mycoplasma pneumoniae (I see that your son is taking Singulair), and presumably other strains of mycoplasma.

I see also that your son was diagnosed with encephalitis. Minocycline easily crosses crosses the blood-brain barrier, quiets microglia, and reduces neuroinflammation. It might be something worth bringing up with your immunologist.

Sorry for the tripple post.

Edit: Your son is taking Biaxin (clarithromycin). I assume this is for the mycoplasma. Clarithromycin-resistant mycoplasma is common now.

there are hundreds of unidentified autoimmune issues out there

+1

looneymom, are you active on any of the CFS/ME forums? They might be able to give you more advice about chronic infections.

It looks like you are in good hands. Does you son have frequent strep infections, and does he have any symptoms of PANDAS? He is receiving the standard PANDAS protocol.

Is mycoplasma suspected, or has any particular strain been identified? Penicillin is not effective against mycoplasma as far as I'm aware.

I'm glad you have a competant doctor. All the best to you and Tyler.

I developed severe fatigue during a bad "flu" approximately 4 years. The fatigue never resolved. I did not recieve a diagnoses of POTS until this January, when I was hospitalized for a week because I couldn't get out of bed without HR ~160 and immediate pre-syncopy.

Clonidine provides me with good symptom control, but it worsens my fatigue, which can sometimes be disabling. Some days I don't eat because I'm stuck in a chair or in bed, and preparing food seems tantamount to running a marathon. On those days I rely on electrolyte sachets.

I'm thinking of trying guanfacine (Intuniv) as an alternative to clonidine.

There is also a PICC line.

It looks an implanted port may be a better option if you think you will need infusions for a semi-indefinite period of time.

I have never actually heard of someone having a port implanted for IV saline infusions related to POTS, but a quick glance suggests that it might be associated with less complications than a PICC line.

http://www.ncbi.nlm.nih.gov/pubmed/24005884

This study suggests that implanted ports are associated with fewer thrombotic events, as compared to PICC lines, at least in chemotherapy patients.

Best of luck.

So it's been a long time since my first cardiology appt, but here's my experience:

After referral and a description of my symptoms and history, they ordered a tilt table test (TTT) and an echocardiogram. They will usually do an EKG, also, in the office. This requires them to place electrodes on your chest, and for a minute or so they will record the results. It only takes about 5 mins total.

The TTT and Echo you will probably need separate appointments for. Here is a good description of the TTT: http://www.mayoclinic.org/tests-procedures/tilt-table-test/basics/definition/prc-20019879

The echocardiogram is just like an ultrasound, only of the heart. It takes about 20 mins, and you'll be asked not to have caffeine or nicotine prior to the test.

Other tests I have had include the 24 hour, and subsequently 30 day holter monitor. This is where they place electrodes (like they do for an EKG) and the leads/wires attach to a device about the size of a beeper that clips onto your belt. You'll be asked to record events (like palpitations, or increased/decreased heart rate) when you feel them, and then write in a journal. The recordings will be transmitted to a monitoring company over the phone, generally. In my case I had to hold the device up to a land-line phone and press the send button - just like an old school modem.

You may also have bloodwork done, depending on what is going on in your case.

Edited to add: I had fainted previously, but it was not a major symptom for me. However, I was having problems with being faint and dizzy a lot, which is what generally prompts the TTT.

You had a very good cardiologist. Most will just do the echo and ECG.

Even a single drink of alcohol will trigger a POTS episode in me that can last for a couple of hours.

Your symptoms sound like some kind of allergic reaction. MCAS/MCAD is often comorbid with POTS and can produce a reaction to alcohol like the one you describe.

Has anyone tried a sublingual nitro spray? That is a good way to rule out mild ischemia, which can cause chest pain. Excess sympathetic activity could be one trigger.