Pistol

@dancer65 - same to you!!! Blessings, good tidings and joy to the world!!!!!

I am not sure what you mean by "BP around 300". Could you clarify? A BP of 300 ( whether systolic or diastolic ) is not sustainable. Unfortunately this IS dysautonomia and I guess most of the people here have one or all of the above. I also have both hyper- and hypotension and have both syncope as well as seizures caused by extreme fluctuations. And I also know about uninformed ( or plainly rude ) ER docs. Sorry you have to endure them as well.

@aryastark - thank you for sharing and welcome to the forum! I am glad you stumbled across our site. Yes - it always is a relief to find out that we are not alone and that others go through the same thing. Be well!

@jenwic - I restrict my carbs mostly to multigrain bread ( 1 slice a day ), nuts, oats, rice and occasionally pasta. I eat a lot of beans, all meat, eggs in moderation and - my guilty pleasure - lots of cheese. Veggies only cooked and low acid fruits. I do not consume sugar since I am glucose intolerant but do drink beer at times, which is high sugar and high carb.

@Miraclemaker11 here is what I found online: Guanfacine - Clinical Pharmacology. Guanfacine hydrochloride is an orally active antihypertensive agent whose principal mechanism of action appears to be stimulation of central α2-adrenergic receptors. By stimulating these receptors, Guanfacine reduces sympathetic nerve impulses from the vasomotor center to the heart and blood vessels. May 1 2019 Mechanism of Action: Midodrine hydrochloride forms an active metabolite, desglyMidodrine, that is an alpha1-agonist, and exerts its actions via activation of the alpha-adrenergic receptors of the arteriolar and venous vasculature, producing an increase in vascular tone and elevation of blood pressure. So - the difference is that one stimulates alpha-1 receptors and the other stimulates alpha-2 receptors. Therefore they both have different actions.

@jenwic - here is a good summary regarding POTS and diet : https://myheart.net/pots-syndrome/diet/ I have improved greatly by adjusting my diet to low carb, high protein, avoiding raw fruits and veggies ( cooked or steamed only ) and by avoiding large meals altogether by replacing them with 6 small meals or snacks a day. This regimen has improved dysautonomia related GI issues ( IBS, GERD, gastroparesis ), improved my glucose and insulin levels and I no longer have hypoglycemia attacks, and it helps my BP and HR to be somewhat controlled. Also - avoiding processed foods that are full of unwanted chemicals has been very helpful to me. I realize that the holidays are probably not the best time to go on this diet 😉but may be a good new years resolution!!

@kisekis - dysautonomia can cause IBS, GERD, gastroparesis etc. I have all 3 and they are controlled with medications ( PPI, Zofran ), improving any nutritional deficiencies ( Vit B12, Vit D and Ferritin ) and diet ( high protein, cooked vegetables, low carb ) and avoiding large meals and eating 6 small meals or snacks a day. Earlier you mentioned you like to eat mainly carbs - that is a bad idea for dysautonomia. Carbs will mess with your glucose and insulin levels. I have to eat them in moderation or they can cause POTS problems. Also - a poor diet will cause nutritional deficits as I mentioned above and these deficits can cause or worsen dysautonomia. You may want to ask your doctor to check your Vit D, Vit B12 and Ferritin levels since they often are low in people with dysautonomia and can easily be supplemented.

@Jwarrior77 - do you have a pulse-oximeter? It could tell you if the slow breathing causes actual low oxygen levels in your blood. I take Vit D 2000 units every day and when my levels were extremely low I took 50,000 units once a week for 4 weeks. I don't believe 2000 units would cause toxicity. However - you might want to see your PCP to have blood work done to check all of your levels, including calcium, potassium etc. and to address your concerns about the breathing.

@Ian T welcome to the forum! I am sorry you have been affected this long. Sudden mood swings - such as depression and rage - are serious and I am glad you are planning to see your doctor soon. You do not have to live like this, there are medications and other methods to help with these symptoms. Best of luck!!!!!

@Chillyhilly - here is an article that explains cerebral hypo-perfusion and its symptoms in POTS. It explains what happens and the symptoms in detail. https://www.disabled-world.com/health/cardiovascular/lightheadedness.php I myself can relate to what you describe. When my BP drops I get pre-syncopal or pass out but more often my sympathetic NS kicks in TOO EXTREME by dumping out adrenaline to compensate for the low BP. This then causes anxiety, tremors, high BP and HR, cold hands and feet, paleness, cold sweats and - in my extreme case - sometimes seizures. Cerebral hypo-perfusion can be caused by both excessive vasodilation ( low BP ) or excessive vasoconstriction ( high BP ). When I am in a hyperadrenergic storm ( too much adrenaline ) I also cannot talk right, I either cannot find the words,, they don't come out right or my speech is very slurred. This happens after a syncopal episode or a seizure as well and is all related to the insufficient blood flow to the brain. Also - excessive histamine release can cause anxiety and a medication allergy would be severe enough to cause excessive histamine release. If you read up online about histamine release you will find many articles about this. However - I am surprised the ER docs blamed your anxiety on psychological reasons. Anxiety is common in an allergic reaction!!!!

@Gabe15024 - good job on loosing weight and following the treatment plan! -- I am wondering if - since you mention the running has worsened your fatigue - it might be better to either change to a different exercise routine, run less or mix it up with different exercises a bit more? I have learned in my own dysautonomia life that there are certain exercises that USE UP energy and others that GIVE energy. For example - anything upright makes me worse but a rowing machine is great for me, so is weight lifting (minimal, just for joint health) and certain stretches. You can be proud of yourself - dealing with the symptoms of dysautonomia is frustrating and difficult but keeping them under control is a big accomplishment!!! Good job!

@Gabe15024 brainfog, fatigue and depression are unfortunately common symptoms of dysautonomia and for many improve with medication and lifestyle. I take SSRI for POTS which also helps with the depression and I take Ritalin for the fatigue ( with good effects and no side effects ). You mention lightheadedness - are you on any cardiac meds that could help with this? Are you following the usual recommendations of increasing water, salt and wearing compression hose? Another way to combat all of these symptoms for me is to exercise and not stay in bed, despite how bad it gets sometimes. The longer I stay inactive the worse the symptoms your describe become.

@Super_tachy_1 - welcome to the forum!!! I am sorry about all of your issues. First of all: anxiety and depression can be a symptom in themselves but can also be caused by dysautonomia. In my case it was a result of having to deal with a chronic and disabling illness (hyperadrenergic POTS). And just to ease your mind - many people with POTS are NOT disabled and live a relatively active life. If anxiety and depression impact your social life and relationships it may be a good idea to bring it up to your physician. I greatly improved after taking SSRI, which is also recommended and frequently used in the treatment of POTS. You said your EP prescribed Metoprolol - that is often a first step BB in treatment of tachycardia and many POTS sufferers improve while on it. I understand being scared to take new meds, especially since we are often very sensitive to even the smallest doses of meds. However - if it was prescribed to you it should be safe. It might make you tired for the first few weeks but that often gets better. You mention you tried Diltiazem but where not crazy about it - what were the effects that you did not like? In my case I take many cardiac drugs including BB and Diltiazem and it is one of the most helpful meds I take. I also wanted to ask if you follow the usual POTS treatments of increasing water and salt intake and compression hose? Especially since you mention you have some blood pooling in your legs - compression could really help for that. Your EP can prescribe the right compression and you can get measured for the right fit at any medical supply store. Here are a few posts from our informational site that may be interesting for you: There is much more information that may apply to you under informational resources of this site. I hope you TTT goes well, don.t be afraid to take the medications your physicians prescribes. We will not know what helps if we do not try!!!! Best of luck - and keep us updated!!!

@Super_tachy_1 - I had 2 TTT's performed and did pass out on the first one. The worst was that I had to stop my BB 3 days before. The TTT itself does not feel good and after I was a bit weak for the rest of the day, but I had no long-lasting ill effects from the tests. Remember - you are being monitored and someone is right there with you. Good luck!

@WanderWonder - this is something that you should discuss with your doctor, he/she can examine your eye.

@WanderWonder https://www.healthline.com/health/general-use/how-to-use-nasal-spray

@WanderWonder - I had a similar experience this fall. I could not sleep, my nose was stuffed when in bed, I became generally ill with POTS. Then I realized that it was Ragweed season and that the stuffy nose/ sleeplessness could have to do with allergies. I started taking Flonase and Antihistamines and got better. I also had to increase my IV fluids for POTS flares ( I get them weekly and as needed ) until allergy season was over. Researching I found out that Histamine release ( whether from allergies or insect bites or other reasons ) can make POTS worse, and it did for me. Now that allergy season is over where I live I am greatly improved.

@p8d - if your infection was a UTI it may explain it. My autonomic specialist told me once that UTI's are some of the worst infections for dysautonomia patients - partially b/c we do not realize them until the are already advanced and have been wreaking havoc in our bodies for a while. Meaning your immune system had to work against the infection prior to you even being aware of having it. I hope you are feeling better!!!!!!!!!!!😙

@p8d - I found this statement on line: Can a low body temperature indicate infection? A low body temperature (less than 96 Fahrenheit) can be associated with infection, but this is rare and only when the infection is very severe and the body's immune system is all used up.

@kisekis - you may find this article interesting https://www.medicalnewstoday.com/articles/320233.php#what-is-an-anti-inflammatory-diet

@kisekis - based on where you live: do you eat a lot of fish? Depending where the fish we eat comes from it can be filled with chemicals, heavy metals etc that can trigger allergies.

@dancer65 -thank you for giving this info for this member!!!!!

@kisekis have you ever considered traveling out of country to be seen by a specialist? I have no experience with online consultations but imagine that a physical exam would be necessary for a true visitation.

@lieze - have you considered consulting a nutritionist? I made an appointment with the nutritionist at our local hospital and she was able to create a personalized food plan for me ( including GI issues, allergies, intolerances etc ) that has truly helped me a lot. Especially if you feel you are underweight or malnourished it could be a great resource for you.

Good news!!! Thank you for sharing.