Pistol

Dear @Nin - this is very common for dysautonomia; we all have good days, bad days and in-between days. Palpitations can occur at any heart rate since they are simply premature beats that do not influence the rate.

@Derek1987 - our local hospital sends bills to collection agencies if not paid, but they send several reminders first. I believe it is legal and has nothing to do with Hippa, since no medical information is exchanged. -- Have you considered a payment plan? I recently was hospitalized for a week and racked up a big bill. I am on a monthly payment plan to pay it off over time. Also - have you applied for financial assistance? Some providers - especially hospitals - offer this based on your income.

@p8d - in my case it does not cause OH but I reckon it could if taking too much. It does help with preventing spikes and keeps me more stable, but before the IV fluids I still would spike despite the Diltiazem. Having said that - I was much better on it, in addition to the other meds. Thay all work together as a combination - I could not tell you which one is the most important. I just know that all of them combined do the trick for me and I do not have any side effects ( but that is not to say it is that way for everyone ).

@p8d - my specialist is also against benzos for the surges. I do use a low dose Ativan for sleep occasionally. For me it does nothing if used during a spike - but at times can prevent one. My specialist also mentioned that many dysautonomia patients end up becoming dependent on benzos. Regarding the Diltiazem - I take 180 mg daily. I started with 30 mg twice a day and slowly increased. I used to take 240 mg but since I get the scheduled IV fluids my BP runs a lot lower and I decreased to the next lower dose. I do not believe that Diltiazem is a good medication to take as needed but Carvelidol is for me. When becoming hyper I take 12.5 ( half dose ) mg extra and often it helps.

@Scout - hyperPOTS runs in my family, most females have it in 3 generations. We all suffer from high BP and - of course - all the other mix-ins. My sisters and I are all on Carvelidol, started at a low dose and then titrated up ( I take 25 mg twice daily ). My one sister and I both benefit immensely from diltiazem ( calcium channel blocker ), but my oldest sister did not tolerate that. Another med that has shown extremely effective in BP control for us is guanfacine. Both my sisters take Clonidine for breakthrough BP spikes during flares, but I did not tolerate that at all. As you can see - although we all have the same illness, treatment is still different for us. Another medication that has shown very helpful for POTS in our cases is Buprobion ( Wellbutrin ). It has really improved my energy and mood, therefore making it easier to follow my exercise regimen ( which also helps with BP control ). Yes - Diltiazem is a good medication to try for hyperadrenergic POTS. It helps to dilate the blood vessels and therefore preventing the BP to rise ( which in our case sky-rockets once it is triggered ). However - I doubt it would be as effective on it's own, at least in our case. It appears the combination of Carvelidol and diltiazem does the trick. I hope your doctor is receptive to try a new med for you. In our cases it was a lot of trial-and-error, but thankfully I was the first one ( after my mother ) to get ill with it and could set the groundwork for my sisters. Their docs simply try everything I am on, so it does not take years for them ( as it did for me ). Best of luck!!!!! P.S. I forgot to mention that we all get IV fluids - my one sister and I get them regularly scheduled ( weekly and more if needed in my case ) and my other sister gets them for flares. But this is a much debated option and currently mostly used for severe cases. But if nothing else helps it often can stop surges.

@WickedMindz - @Sushi is right. Unfortunately most of us have to travel out of state for proper care by an autonomic specialist. That is not to say that your neurologist does not know how to treat you. As of recently there are more physicians that are willing to educate themselves about dysautonomia. In many cases though we get handed from one physician to the other b/c neither one knows what to do. In my case I was referred from one specialist to another and then sent back to my PCP, with a big bow on my head ( as in: here, you can have her back! ). I am just mentioning that in case you do not find proper treatment from your local doctors. IF that happens you might want to look into autonomic specialists. You can always PM me if you need help with that. But hopefully your doctor(s) know what to do. Good Luck!!!!

@Angelika_23 - I am sorry you have to deal with a possible celiac diagnosis!!! -- Although I do not have it I went through a period with severe GI symptoms caused by dysautonomia. At that time I had a lot of testing done and at some time ( when I had both esophagitis and duodenitis ) they suspected Celiac. My gastroenterologist and PCP both said that celiac disease could potentially worsen POTS, possibly due to the stress it poses on the body constantly fighting it. In my case it turned out that the dysautonomia was what caused my GI issues, not the other way around. In my case - I have hyperadrenergic POTS - the constant overactivity of the sympathetic NS caused an overactive GI system, especially excessive acid production. I hope you will test negative tomorrow - please update us!! Best wishes 😉 !!

@WickedMindz - several things come to mind: I also passed out during my first TTT and was diagnosed with NCS. However - later I had another TTT, went to an autonomic specialist after that and was diagnosed with hyperadrenergic POTS in addition to NCS. The symptoms you describe in the above quote sound very similar to mine. In my case all cardiac work-up is normal too. Have you considered seeing an autonomic specialist?

Dear @WickedMindz - vasodepressor syncope - also called neuro-cardiogenic syncope, or NCS - is a dysautonomia. you can read more about it here: Regarding the afib - I have POTS, NCS and atrial flutter and can understand your confusion. Commonly if your cardiologist is suspecting afib he/she can order a halter monitor. This would show if you have episodes of afib when you are symptomatic. Personally I do not feel it when I have atrial flutter. Since this forum cannot give medical advice it is safest to bring these questions to your cardiologist. Also - if you are concerned regarding having POTS in addition to NCS you could ask your cardiologist to perform a Tilt table study. Please keep us updated on your progress!!!! Best wishes.

Abe - I know of people that developed GI problems after heavy antibiotic doses. I agree with what others have said - an EGD would be most important in finding out what causes your pain. Did you finish the H. Pylori treatment and did it help? I had it and the first course of medication did not help, so they gave me a different course which helped. Usually physicians re-test the Potassium level after supplementation and then re-order the EGD. Have you went back to the doctor that was going to do the EGD? As far as I know antibiotics do not cause POTS ( to the best of my knowledge ) - but the infection can. The stress on your body from illness can trigger dysautonomia. What are your POTS symptoms, if I may ask?

@Derek1987 - do you feel dizzy when this happens? I am glad that @MomtoGiuliana shared that she also has this symptom. I am not sure what would cause this but I hope it is " just " POTS 🥴!

@MTRJ75 - they obviously do not acknowledge that dysautonomia is a chronic condition. I wish there was such a thing as a recovery period for POTS! --- Just keep appealing and get a lawyer.

@Abe - yes, I consulted with a dietician when dysautonomia caused a lot of GI issues. The dietary changes she suggested were really helpful. Following her advice my symptoms ( severe reflux, constant nausea, IBS, duodenal ulcers and Barrett's esophagus ) greatly improved! Here is what I have been doing: - avoiding large meals and eating 6-7 snacks or small meals a day. Avoiding drinking with food but do it before and after. - no raw fruits or vegetables, only steamed or cooked. She said to drink the liquid that I used to steam or cook them since it contains nutrients that "washed out" during the cooking process. - no citrus, spicy foods, acidic foods like tomatoes or anything vinegary. No alcohol or sugary drinks. ( I tolerate carbonated beverages but many people should avoid them too ). - Low carbs ( that is for POTS, to avoid post prandial crashes ) and high protein. I eat a lot of meat and beans and eggs. - Avoiding eating after 7 pm. A nutritionist or dietician can be very helpful in developing an individual dietary plan. Hospitals have dieticians on staff that usually accept pateints for a consultation, that is what I did.

@ReginaH cardiac rehab sounds wonderful! That is a very good idea b/c they can adjust your exercises to your HR and BP and see overtime how you improve! I wish you good luck - please keep us posted on how you are doing!

I have a port, so it Is not a problem. I used to get IV fluids only when severely symptomatic but ended up every 6-8 weeks in the ER, often having seizures and syncope. Than I would get them every week and then twice a week. Now that I have a port I can do them at home, a nurse comes once a week to access my port. If I am bad I get them 3 times a week. Most physicians are against scheduled infusions, many of them feel that as long as we can drink we do not need them. In my case however drinking did not have the same effect. It kept me well hydrated but had no influence on my BP and HR. --- It took many years for my PCP to agree to the port, since it has risks ( blood clots and infection ). But several physicians refused to give me infusions b/c they did not see the need and I ended up having to be admitted several times a year. Now I have not been in hospital or ER for POTS once!!! @ReginaH - since your HR and BP fluctuations are mild your doctor might start you on medications which - in addition to the other measures you already take - help many. Infusions are mostly reserved for medication refractory patients. You might be surprised how well medications can help!!! I hope you will find relief - here on this forum we all know how much the symptoms of dysautonomia can rob from your life!! Best wishes!

Well - that's something! Isn't he supposed to send them that if requested? YOU certainly can demand he send them , or else you can request a copy of any of your medical record and send it yourself. Regarding the forms that SSI requires of him: it is his responsibility as a PCP to fill them out, you just have to be after him to do it on time. If you end up having to go to a hearing you will have a lawyer with you ( assuming you will get one ), he will do all of the talking.

@MTRJ75 - welcome to the club!!! I went through a similar experience. When I became disabled I had a Long Term Disability insurance and they helped me with the whole process. They provided a lawyer etc. In the beginning they got hung up on the fact that I take autonomic seizures - they sent me questionnaires about epilepsy. Of course they did not approve that. So I appealed and the next time they "processed" me under cardiac problems. Since my several monitors "only" showed sinus tachycardia ( a harmless rhythm ) and my EKG's were essentially normal they decided that my frequent syncopal episodes were not a reason for me to have to stop working. ( I used to pass out several times a week at work ). All of this despite the fact that my PCP filled out all of the forms they sent him clearly stating what I had and the symptoms that made functioning at all ( let alone at work ) impossible. I was denied again. So I had to wait over a year for a hearing with a Judge. Once there I explained everything that had happened to me and what POTS looks like, with all the gory details. He awarded me SSDI on the spot and said that he had never heard of POTS but he clearly understood how it affects a life. It is pretty standard to be denied on the first try. Most lawyers will not even see you until after your first denial. You can find disability lawyers online or check with the SS office in your area, they have some contacts. You don't have to go with lawyers in your state, many people go with some of those big disability companies, mine was in New England. The lawyer they sent for the hearing flew in from there. They take care of everything and deal with all of the paperwork and forms. They also help you to fill out the questionnaires. Oh my - good luck! --- Don't be discouraged, it is a real frustrating process and yes - they are generally very suspicious and can make you feel like garbage. Just keep going. Best of luck!!!

@ReginaH - a narrow pulse pressure is not uncommon in dysautonomia patients. You probably notice it more b/c you are not on any medication,s as you stated in your initial post. Also -symptoms are more important than numbers. By that I mean it is more productive to judge your condition and tolerance by the symptoms you experience rather than what your numbers say. I usually determine what helps by how much my orthostatic intolerance, fatigue, brain fog, palpitations etc improve.

@ReginaH - I have orthostatic diastolic hypertension - and I am diagnosed with hyperadrenergic POTS. My BP ( before finding treatment ) went from 90/50 sitting to around 150/ 160 over 100/ 110 standing. In addition to the high BP I would run tachycardia in the 150's at the same time. This often would lead to syncope and even seizures. I was started on many different meds and it took years to find what helped. However - even with the right meds I did not improve significantly until I started scheduled weekly IV fluids. Since I get them ( 1 1/2 years now ) my symptoms and BP and HR have significantly improved and the seizures and syncope rarely happen anymore. If you are very symptomatic and conservative treatment does not help I personally would see an autonomic specialist. I could not get proper help from many cardiologists and neurologists until I went to an autonomic specialist and he changed everything. Many MD's might dabble with dysautonomia and really try to help, but since it is such a complicated illness finding the right diagnosis and treatment can be difficult. Personally I would not be satisfied with such a superficial diagnosis as "autonomic nervous system disease". That really does not mean anything. There are so many dysautonomic syndromes - if you do not know which kind you have then it is difficult to pinpoint the mechanism behind it and therefore difficult to treat. On our physician page you can find many physicians that have an interest and understanding of autonomic malfunction. Maybe you can find someone who would be able to determine which type of dysautonomia you have. Best of Luck!!!!

@ReginaH - have you had a TTT? ANS disease is often used as a catch-all term if the type of dysfunction has not yet been found. A TTT might expose what type of dysautonomia you have. -- No, a blood transfusion would not help, it might even make your symptoms worse. In some cases of dysautonomia the blood is too thick and our heart has to pump more forcefully. This mechanism can be a reason for low PP. Blood transfusions would not help with that but IV fluids can. They help to "dilute" the blood, making it easier for the heart to pump it through the body because it is "lighter".

@Sashmonsterr - in order to be diagnosed with POTS your HR must have a sustained increase of 30 BPM or above 120. In your case the HR jumped 29 BPM and then dropped 8 BPM by the end of 10 minutes. That is probably why the MD called it a transient increase in HR. --- Were you anxious or nervous during the test? This can lead to an increase in BP. --- I am not sure but I doubt that NSAIDS would influence the outcome of a TTT. ---- I know that TTT's can be both false negative and false positive, so they are not necessarily the gold standard. Do you normally have symptoms of orthostatic intolerance?

I have been trying to figure out why POTS can worsen with weather changes ( as it does in my case ). According to this article found online https://migraineagain.com/feel-4-ways-barometric-pressure-affects-health/ I found that barometric pressure affects migraines, BP, blood sugar levels and joints. It can cause vasoconstriction - and the drop in blood sugar can cause fatigue. Most importantly the article states that when the barometric pressure drops it causes the blood viscosity to increase. That might be the clue - thicker blood will trigger POTS. This would explain why in some of us our symptoms worsen in certain seasons ( spring and fall in my case ). I usually experience a sudden onset of POTS symptoms like severe fatigue, BP fluctuations leading to syncope, increase in orthostatic intolerance … all improved by IV saline. This explains why in many of us IV fluids are so helpful - they improve the blood viscosity!!! I find this very enlightening and an explanation as to the reasons behind seasonal flares. -- I also have found that allergies cause flares in me due to the effects of histamine release ( vasodilation ), this includes seasonal allergies ( spring, fall ) as well as insect bites and rashes ( summer ). does this ring a bell for anyone?

@judyinthesky - I have hyperadrenergic POTS ( too much adrenaline ) which at times causes me to have insomnia due to the night time adrenaline levels not dropping. When that occurs I fall asleep easily but keep waking up throughout the night and I am restless and easily irritated during the day instead of being tired. Having "a short fuse" unfortunately is a symptoms of the body not getting enough sleep and running on adrenaline. Have you referred to your doctor? Maybe he would order a sleep study ?

@Nin - when I asked my doctor about that years ago he said that our symptoms depend on our autonomic tone and that fluctuates in dysautonomia in an unpredictable pattern. Over the years I have found that to be true.

Dear @Random-Symptom Man - I am so sorry about your health!!! It is so scary to go through this time of uncertainty and open-ended questions! I hope and pray that it can be worked out!!! I hate to ask this but have you considered MSA (Multiple System Atrophy) ? It is a dysautonomia that shares many of your symptoms. Despite the seriousness of your unclear situation - please stay positive and hopeful. I wish you the very best 🤗