Pistol

@CallieAndToby22 - the fact that you don't tolerate fast food and greasy chips may mean that you have a problem digesting certain fats. My husband has this - when he eats fast food or chips he feels very unwell and the next morning he looks like he is 9 months pregnant. When he started to cut out any fats used in deep frying he got better.

@MikeO - that is a perfect log! If I was a teacher I would give you an A!!!!

Anything acidic, very fatty foods and carbs make it worse for me. Lean protein and cooked veggies make it better. Also ginger ale helps me.

Hi @CJ65 - that is a tough one. Guanfacine and Propranolol both should not be stopped abruptly or you can get those extremely high BP's. I was on guanfacine for years and luckily my BP improved so I could go off it but I had to do this EXTREMELY slow. I would never do this suddenly! Once I had to stop my beta blocker for 3 days before a TTT and I was sooo sick! Personally I would not be able to partake in a study that requires me to stop my meds, but I applaud you for doing it!

That depends on the mechanism of your specific type of dysautonomia. There are many ways by which the ANS can malfunction, that is why - for example - POTS patients vary in symptoms and treatment response. Whether you suffer from NCS. OH, POTS or other forms of dysautonomia - they are all caused by a certain way the ANS does not respond normally. As I mentioned above, the triggers of a flare cannot always be clearly identified. I have had HPOTS for over 12 years and now - luckily - have identified and can try to avoid many of my specific triggers. For example: allergies and insect bites are a trigger for me b/c histamine release causes vasodilation and this causes my ANS to respond by dumping adrenaline to compensate. Also barometric pressure changes cause me to flare badly - I read that these pressure changes can affect oxygen levels in the air as well as our BP. Again - in my case a change in barometric pressure will cause vasodilation and this - again - will cause a dump of adrenaline from my ANS. But there are many triggers that can cause worsening symptoms, and each of us responds differently to different things. What can be helpful is to keep a diary of how you feel each day, also recording HR and BP at certain times each day. Eventually you will see a pattern emerge that can lead you to identify your specific triggers.

@CallieAndToby22 - I know what you mean about being too sick to see the doctor ( haha! ). When I was at my worst travelling out of state to see my specialists 8 hours one way, staying in a hotel and then travel back 8 hours would land me in bed for weeks each time. But I did it because there was no other way for me to get proper treatment. I hope when you go to UAB for testing they will provide you with a contact of someone who will treat you after their diagnosis.

@Delta - Hah! Perfect! ---- @Knellie - I used to be extremely bad with the acid reflux, nausea, diarrhea etc. What helped me in addition to the H2 blockers was something called GI cocktail ( a compounded medicine consisting of Mylanta, viscous lidocaine and phenobarbital ) as well as Zofran. It CURED my Barrett's disease and GERD, and eventually I was able to stop all GI meds except for H2 blocker. My GI specialist put me on this regimen after a very abnormal EGD.

I agree with @TCP - not all autonomic specialists ( actually a lot !!! ) are cardiologists. I assume you tried all of the autonomic clinics in the US?

Hello @MikeO - welcome to the forum! I took pyridostigmine years ago and had to stop for the side effects. I do not remember which exact effects they were but i know that the specialist took me off it. In any dysautonomia it s common to experience medication sensitivity, and that is why finding the right treatment can be so frustrating. It is possible that the cramping and bowel emptying is caused by IBS-D, which also can be a symptoms of dysautonomia, but is listed as a side effect of Pyridostigmine. I would discuss it with your doctor and consider decreasing the dose or even going off the med if your doctor recommends that. Ending up with these side effects can be worse that the symptoms the med is treating, and ongoing GI problems can interfere with your ability to retain enough fluids and salt.

Hello @Teodor - what we generally mean by a "POTS flare" is when our symptoms are becoming suddenly much worse, normally following one of many triggers ( illness, weather changes, stress, injury, diet changes or changes in hydration, too much or too little activity ... ). For example - one might become bedridden, unable to get up without fainting or severe symptoms of tachycardia, BP changes etc. We often are extremely fatigued but cannot sleep, we may be too nauseated to eat or drink, we sometimes cannot even walk to the bathroom. Of course not everybody's flare has to go to that extreme - some simply are too tired to work and return to severe symptoms despite the normally effective medications. So - in other words, if you see a sudden peak in your POTS symptoms it is probably what we refer to as a flare. Most POTS symptoms come and go, and there are times when we feel good and times when we - often for no reason - become bad and the disabling symptoms come back. That is ONE of the reasons maintaining employment can be hard for POTS patients - when a flare hits we most likely will not be able to go to work ( or do house chores etc ), and there is no guarantee how long it will last. For most of us overcoming a flare means lots of rest with periods of very light exercises as to not become deconditioned, avoid stimulation or stress, replenish salt and fluid and simply wait until it blows over. Sometimes that can be a few days and other times it can be weeks or even months. Flares are unpredictable and make life difficult, but eventually they are overcome, and symptoms become bearable again. I hope you do not experience flares?

@Amy45 - I am sorry to hear about your troubles! I do not have any Input on the nature of your throat tightness ( other than it commonly occurs as part of an allergic reaction ), but I want to mention that I take Flexeril ( Cyclobenzaprene ) - a muscle relaxant. I take it for the the muscle spams that come from elevated norepinephrine levels in HPOTS. This medication tends to make me sleepy but otherwise has no negative effects on my POTS. Maybe your doctor does not believe this type of medicine would help your symptoms? However - it might be worth trying!

Have you ever looked into bone broth? It is rich in electrolytes, can be organic and also fat free, and you can add as much salt as you like. It is rich in calcium - of course - but I am not sure about potassium.

@Platypus - I am glad you found relief! Yes, taking in electrolytes or electrolyte rich fluids is very important, and proven to be effective in most cases. There are several threads on this forum regarding this topic. Some people swear by broth, others use coconut water and many find the best relief with sports drinks ( although the latter contain a lot of sugar as well ). And then there are the electrolyte powder packets you can dissolve in a fluid of your choice. I hope you continue to feel better!!!!!

Thanks for posting this @p8d 🥰

@E pots - do you mean you have been denied by your long term disability insurance? Or by SSDI? In my case I was approved by the LTD but denied twice by SSDI. I had an attorney ( provided by the LTDI ) after my first denial. It is very common to be denied based on POTS symptoms alone - despite being bedridden, passing out and taking seizures even when lying down they denied me twice. SSDI goes by diagnoses - I was not disabled enough with seizures and also was not on any seizure meds in my first denial. The second denial was based on hypertension and tachycardia. Only when I - after 2 years - had an in-person hearing with an Administrative Law judge did I get approved. The judge was able to hear from me how POTS affects my life, from fainting in public when out of bed to being unable to cook or do light chores around the house to being unable to care for my child. All of this was not taken in consideration during both "paper applications", but he approved me 100% on the spot. The most important fact to repeatedly point out is that our symptoms are so unpredictable that it leaves us extremely unreliable in way of being able to show up for work. Some days we may be able to do work for two hours and then - from one second to the other - become bedridden for days or even weeks. This makes us unfit to work in ANY fashion. My employer even sat me at a computer for only 6 hours 3 days a week and it was too much, I still ended up having to leave work due to fainting etc. And I was not able to do my job because of the brain fog that comes with cerebral hypo-perfusion. Another important thing is that you need to be completely on the same page with your docs. In most cases specialists do not get involved in the SSDI process - that is the job of the PCP. But the PCP needs to get documentation of all findings of specialists, and needs to be informed about all treatments and meds you try - this way he can document that you are not responding to meds commonly effective in treating your illness. My doctor wanted me to stop working before I did and he documented everything that kept me from working in his notes. When it came tome to provide that documentation to SSDI it was all there. Keep a record of all appointments and all letters your specialists send to your PCP - that way you know what everyone does. If you don;t agree with a specialists recommendation make sure you bring that up to your PCP. If you don;t have a good PCP - find one. I personally would absolutely look for a disability law firm. I did not go with a local lawyer but had a law firm from out of state that specializes only in SSDI - there are many reputable lawyers like that and everything goes via email or mail, so a face-to-face is rarely necessary, and of so it can be done online. SSDI lawyers do not get compensated until you get approved and get your settlement - their cut gets automatically deducted when SSA distributes your money, so you will not be involved in that process at all. Don't get discouraged or overwhelmed - it is a really long and frustrating process. Many people have to go on medicaid until they get approved - there is no shame in that. It's cases like yours that these programs are for. You are not alone, and it will all be OK.

@yogini - lets hope that's all it is! I wish you all the best, and a quick recovery .

My mother had to have a thyroidectomy and was told that it is virtually impossible to remove ALL of the thyroid tissue due to its proximity to the vocal chords ( or is it the voice box? ) So she also had radioactive treatment to destroy the rest of her thyroid. I have definite signs of auto-inflammation ( IC, gastritis, swollen painful joints, skin breakouts etc ) but most of my blood work is negative. The only lab that is elevated periodically is the ESR ( which is a general indicator of inflammation ). CRP is a more direct test to diagnose inflammation or even AI. I am not aware that these tests are commonly elevated in POTS patients, but I assume that it could be if the cause of POTS is of inflammatory origin. Here is an article about this: Autoimmune markers and autoimmune disorders in patients with postural tachycardia syndrome (POTS) - PubMed (nih.gov) Quote "Conclusion: Patients with POTS have a higher prevalence of autoimmune markers and co-morbid autoimmune disorders than the general population. One in four patients have positive ANA, almost one in three have some type of autoimmune marker, one in five have a co-morbid autoimmune disorder, and one in nine have Hashimoto's thyroiditis.

I am not able to take NSAIDS for the same reason. Dysautonomia in my case caused severe GERD and as a result I cannot take meds that are aggressive on the GI tract. What has helped me immensely is Turmeric - a spice that has known and powerful anti-inflammatory properties. For GI problems, especially ulcers etc, my GI specialist ordered a combination of H2 blockers, acid reducers and something called GI cocktail ( Mylanta, viscous lidocaine and phenobarbital ). This mix healed the erosions caused by the increased acid production, including Barrett's esophagus - a pre-cancerous abnormality of the lining of the esophagus. Make sure you consult a GI specialist for your symptoms!

Hello @Bobannon - this all sounds very scary! I also have a history of passing our daily, despite the usual self treatments. Beta blockers commonly cause a loss of energy and feeling tired - most often this goes away after a few weeks, once your body adjusted to being on them. However - ANY medication you take should DECREASE episodes of syncope. You should inform your prescribing physician right away of an increase in syncope. In POTS most cardiologists order a beta blocker for the tachycardia, as well as the ectopic beats. Chronic inflammation can be a cause of dysautonomia and the cause needs to be investigated. I too suffer from POTS as well as chronic inflammation, and since my autonomic specialist started me on Plaquenil for the inflammation both inflammatory and POTS related symptoms have improved. This is a very good idea. Exercise is essential in overcoming POTS, and in a cardiac rehab setting your HR and BP will be monitored during the exercise, so they will be able to not only see what is going on but also assess your tolerance to exercise. When I was at my worst I passed out when I would be active - if that is the case for you they will be right there and report any abnormalities to the physician that ordered the rehab. Unfortunately it is the norm that autonomic specialists have very long waiting lists for new patients - most of them over 1 year. In the mean time it is important to have a close relationship with your PCP, who will need to address any serious symptoms such a syncope, chest pains etc. I had to wait one year and in the meantime saw 4 cardiologists that were equally useless in treating my POTS - I hope that is not the case for you. Today most physicians have a basic understanding of POTS, but often that does not go past fluids, salt and beta blockers. I am lucky to have an excellent PCP who tried really hard to control my symptoms while waiting for the specialist. I agree with @CJ65 that measuring your HR and BP frequently is important, and keeping a diary of those numbers as well as your symptoms can be extremely helpful to your physicians. I also keep a note book in which I record any questions I have for the different docs and that I take to appointments with me. That is the only way I can assure that all my problems get addresses during appointments or phone calls. And don;t be afraid to make a pest of yourself - only if your docs know what is going on can they make necessary changes to your treatment. Recurring uncontrolled syncope is NOT OK - so you need to make sure your doc knows about it.

Hello @Omegaprime - I am sorry you are having such a rough time! -- The symptoms you describe sound like they could have different causes, not necessarily dysautonomia. Chronic fatigue is - as the name states - a chronic ( and not temporary ) state of fatigue and exhaustion. It does not go away after a few weeks. Temporary fatigue after any viral infection is to be expected. This - and the sweating - can also have different causes. For example: both can simply be from the heat and humidity of this summer. Most dysautonomia has increased symptoms upon standing. Orthostatic hypotension, POTS, neuro-cardiogenic syncope - all these dysautonomias have symptoms brought on by being upright. Do you feel that your symptoms are worse when standing?

Thanks @toomanyproblems - that is really interesting!

I am waiting for my books to be delivered to my friend. We live in different states and send each other books when we are done reading them. Then we "review" them and talk about them on the phone. Its fun - we started that during the quarantine and now we are continouing it.

@MTRJ75 - that is why with dysautonomia it is recommended to eat frequent small "snacks" rather than actual meals. I follow this regimen and find that as ong as I keep something in my stomach all the time I have less hypoglycemia and less dysautonomia symptoms

@sunbun - how scary! I am sorry you are having such a hard time. I have HPOTS and NCS and used to have daily episodes of presyncope, syncope and autonomic seizures. The latter caused by sudden vasoconstriction causing cerebral hypo-perfusion and the syncope caused by sudden vasodilation causing the same. I am VERY familiar with the prodrome symptoms of syncope as well as the symptoms of recovering from it. I have never had any type of hallucinations or psychosis from either scenario but I do have visual disturbances such as tunnel vision, floaters as well as dimming vision before and after the episodes. I assume that it could be possible to experience hallucinations from not enough oxygen reaching the brain, as well as from anemia if it is severe enough. I would be careful and if it repeats I would notify your doctor.

Love your cats, @Derek1987. Thanks for posting!