Pistol

That is nonsense. GI issues pretty much always come with POTS, they are part of the package. And when I started with POTS symptoms I also started with generalized joint pains. Until recently I did not really know why they are listed as a symptoms of POTS but now I know that it has to do with autoinflammation. When I flare I also get the joint pains. NSAIDS do not seem to help me but a week of steroids completely stopped them ( except the tapering off caused a flare ). So there you have it - I agree with what @KaciCrochetssaid: he doesn't know jack! --- Sorry you are so bummed out, I know how that feels. Just take things easy, rest up and know that this too will pass.

👍!

@MTRJ75 - yes, the video links will come out in mid November.

@Derek1987 - since I have a history of seizure with flushing the ear my doc wants me to come to his office to have this done. I would have the ENT doc do it - they can actually remove the wax with a tool instead of flushing it out, I had that done and it did not cause an episode.

I watched several of the sessions and they were very interesting. What excited me the most is that Dr Grubb eluded that earlier this year they were getting close to some new findings linking auto-inflammation ( vs auto-immune ) to dysautonomia, but due to COVID all studies and research had to stop. As soon as studies can restart he sounded hopeful that new information will come out. Sooooo awesome!!!! I love it when that happens 😀!

@Derek1987 - the same thing happened to me, I too have HPOTS. I had a perforated eardrum and blood built up in the ear canal. Once the drum healed they flushed out my ear ( after using drops first ). While flushing I had a seizure (same mechanism as syncope), BP was high. I was told that differences in pressure in the ear or even the swooshing sound and the cold of the water hitting the drum can cause a sudden drop in BP - which in HPOTS will trigger the Sympathetic NS and the BP skyrockets. Best to avoid doing that 🙃!

A great big THANK YOU to Chelsea Goldstein (who created the many wonderful articles under the "Living with Dysautonomia" tab. A wealth of valuable information that I wish I had when I first went through the trials of POTS and Life. Two thumbs up, Chelsea - this will help so many people!!! 👍

Wonderful Resource that will help many going through this - THANK YOU for writing it!!!!!!!!!

Hello @Hippopotsamus - yes, I am extremely medication sensitive, this is a common problem with POTS. My specialist recommends to always start new meds with the lowest - or even half of the lowest - dose on the market. In some cases he even recommends pediatric dosages. -- I tale escitalopram 20 mg daily, but I started out at 1/2 a tablet. Wellbutrin I took Bupropion XL 150 mg - it really helped a lot and I took it in addition to the Lexapro but unfortunately developed a skin reaction and had to stop. Escitaloprma and Bupropion are the two SSRIs and SNRIs that Dr Grubb recommends and I found and article that showed the following table: Treatment Application Form Effective in Problems Bupropion 150-300 mg XL daily PD, H Tremor, agitation, insomnia SSRI-Escitalopram 10 mg PO Daily PD, H Tremor, agitation, sexual problems

@Hippopotsamushave you tried Bupropion ( formerly Wellbutrin )? It is an SNRI, therefore works on both Serotonin and Norepinephrine. It is often prescribed for POTS and has helped me.

@brilliantlycrazy - yes, I am all better now. I ended up having to taper off more slowly - 10 mg for 3 days, 5 mg for 3 days, 2.5 mg for 3 says - then stop. The prednisone did help wonderfully for the inflammation and next time we will use it again but taper off slower. My doc said that 5 mg is still a therapeutic dose so you may want to ask your doc if it is OK to cut in in half and go dwon to 2.5 mg once you are finished with the 5 mg. Let me know how it goes - and good luck with the testing!!!!

Hi Derek - wow, it sounds like it is overdue to get them out! -- I had many surgeries since I was diagnosed with POTS. Since you will be under general anesthesia you won't know what;s going on, but in order to keep you stable during the surgery they should give you at least one liter of Fluids pre-op, that's what helps me. There were times when my BP dropped dangerously low during the surgery ( not a problem, they have drugs for that ) and other when it got high, but if they use the fluids prior to and during the surgery my VS stay very stable. After the surgery you will probably be in pain, on pain killers and in a flare ( sorry to be so blunt, just trying to prepare you ) and that is to be expected. Tonsillectomis in Adults is no picnic, so just prepare to be out of commission for a while. Most important will be the fluid intake - drink, drink, drink!!! Anything - popsicles, jello, crushed ice - you can get in. Whenever I had surgery that landed me in bed afterwards I took it real easy until I was able to stop using pain killers and then gradually increased my level of activity. Don't be alarmed if you faint a few times ☹️! The good news: chronically inflamed tonsils can cause a lot of chaos in the body and probably contributed to your POTS symptoms. Once they are removed and you recovered from the surgery there is a good chance that your POTS could become more manageable. When your immune system is constantly fighting the body is under a constant state of stress - therefore POTS can be unstable. Once the source of inflammation is removed or treated your body has a chance to calm down and the constant overactivity of the ANS may calm down. So good news in the end!!! --- If you never had surgery before you might be quite anxious - it is a good idea to tell them that before surgery - they can give you something to calm you down so that you do not develop tachycardia or high BP going into the OR. They do that with me b/c I have had seizures before, during and after the surgery, and the fear of this happening gives me a lot of anxiety before procedures, but if they sedate me beforehand the chance of this happening is less. In the end just try to relax, you will be in good and experienced hands and since your doc already knows about HPOTS you can consider yourself lucky. Being kept over night is great - they do that with me too, and since you will be receiving IV fluids there your recovery will be a lot safer. Best of Luck, try not to worry and have a speedy recovery!!!!!!!

@Derek1987 - just be honest. I had already lost my job due to POTS after over a year of trying to work in much limited fashion, even just sitting at a computer and using a wheel chair. I was turned down twice but when i had my hearing I simply described what it is like to live with POTS, how something as simple as the ringing of the phone can make me pass out or have a seizure, that I had to lie down in a filthy bathroom in a drug store or restaurant etc to avoid making a scene by passing out in public. I pretty much simply painted a picture of the reality of living with POTS and how it affected my quality of life, financial and personal consequences etc. I had a lawyer but he never once had to speak b/c the judge asked questions and I answered honestly. There was no stress for me involved b/c I had nothing to hide. In the end the judge approved me on the spot and in his letter mentioned that in my case it was plain that the symptoms of my disorder prevent me from being able to work in any capacity. It really is the same for you ( I know how much POTS has affected you ). My advice is: don;t be scared, just be honest. I also told the judge that I don;t see anyone hiring me b/c I am unable to follow a schedule or work reliably and that I would have to disclose that to any potential employer. Who WOULD - in their right mind - hire someone who warns them that they can not even leave the house to go to the doctor without having to spend the rest of the week in bed? And cannot even promise to be able to answer the phone when it rings? Cannot stand or walk or listen to music or watch videos or sit on a computer for any length of time or even make coherent sentences? If you look at it that way you see that there simply is no way for you to work and the judge will see that too. That should give you some peace.

@CallieAndToby22 - seizures CAN be a part of CERTAIN types of dysautonomia. I take seizures caused by HPOTS, mine happen when the blood vessels to the brain suddenly constrict so severely that there no longer is any circulation to the brain. I respond by an aura of sluggishness, blank stare and then full seizures with extremely arched back and stiffening of all of the body. They last about 30 to 60 seconds. Lucky for me one similar event was caught on long term EEG and they could figure out what the cause was. Prior to the diagnosis of autonomic seizures I had to go through testing for epilepsy - and I believe that all seizures will ( and should ) be approached as that first. That means that you should see a neurologist about the seizure and get all tests they normally do for new onset of seizures. Did the ER tell you that you had a seizure? Usually when a patient has their first witnessed seizure the ER just makes sure you are safe, if you have a severe seizure while in the ER they may have to administer medications to stop it. Then most patients get either admitted for further testing ( depends on many factors ) or they are sent home to see the PCP to be evaluated for seizures, which commonly leads to a referral to a neurologist. There are several other causes that can lead to seizures, that is probably why they checked your labs. If there is concern for seizures being caused by something going on in your brain they usually do a CT scan. As you see - to determine the cause of seizures is a long process and need to be followed-up by neurology. I am sorry you are feeing so scared and feel that your doctors are not addressing your health issues. Please know that these things do take time, for all of us. I believe a referral to Vanderbilt takes time also, if you feel your doc has not sent the referral then I would continue to call his office checking on the progress of the referral.

My sister in Germany has an unknown autonomic condition, basically HPOTS without tachycardia and TTT with norepinephrine tests normal, but all other symptoms including high BP upon standing etc. She will se a geneticist soon but the geneticist is not sure what genes to test her for. Has anyone here had genetic testing for dysautonomia and if so - what genes did they test for? Thank you in advance.

@MTRJ75 - emails with links to the recorded sessions will be available for registered guests only. So I would register,

I am not sure if anybody is NOT aware but this years DI conference starts Thursday ( through Saturday ) via Zoom! Due to COVID all talks will be given virtual, therefore registration is free. There are many great talks by important specialists on the menu, starting off with Dr Grubb. You must register Wednesday to get the link to the Zoom, so here is the link: https://www.dysautonomiainternational.org/page.php?ID=205

@HCD77 It has been many years since my last TTT and I was only on 2 meds back then. I had to stop the beta blocker 3 days prior and was very weak and fainty from it. Of course I passed out during the test. I think it is necessary to stop them b/c my sister recently had autonomic testing done without stopping any meds and passed everything with flying colors - despite having dysautonomia. So not stopping can show a false-negative result. But you have to be aware that you will probably have a flare from it and plan the following week or so accordingly. I always felt bad after the tests. Good Luck!!!

I used to hold a talk for the nursing students at our local college during October. I would explain what POTS is, the different types, treatments etc and give an insight into what it is like to live with it. They always were thankful and I even was treated in the hospital by one of those students ( she was a RN by then ) and she said that she knew what my diagnosis was because of that talk. --- Unfortunately I am no longer physically able to have those talks, Now I use this forum 😉

@HCD77 and @Delta - I believe the fatigue is caused by 2 things: first of all we are constantly in a state of stress due to the body attempting to establish balance and second most of the time we operate with lack of circulation, meaning we do not have enough oxygen going to our cells. Both of these mechanisms will cause fatigue. There probably are other factors involved in addition but as far as I know these are the most commonly believed theories for fatigue in dysautonomia.

Interesting - I am born in Germany and my family has Eastern european heritage, we fit the jewish body description ... and HPOTS runs in 3 generations of the women in my family. I have applied for a study through Mayo that tests DNA for HPOTS ( currently on hold due to COVID ) --- we are all diagnosed with genetic dysautonomia, I wonder if it is that gene you are talking about ..

@Knj822 - I experience something similar to what you describe whenever my BP is either too low or too high. I was told that in POTS chest pain can occur when the circulation around the heart changes ( which would be the case when your BP drops ). I also have Prinzmetal angina - chest pain caused by sudden and severe spasms of the coronary arteries, same mechanism as Raynaud's syndrome, which I also have. I too get the radiating pressure up my neck when this happens.

@HCD77 - I have to travel 8 hours by car to see my autonomic specialist every time, with overnight stay in hotel. If you drive by car make sure you stop often to get up and move, drink a lot of fluids. Make sure someone drives you!!!! I myself cannot drive anymore due to POTS, so my hubby drives. --- Autonomic testing can be taxing - you never know what will happen. Plan for extra time possible after the testing - you may not feel well enough to handle a 6 hour trip right after and need to stay longer. I always use all of the time in the hotel to just rest. ---- Good Luck, I hope they find something that will lead to a successful treatment for you!!!!

@Knellie - I think I answered your previous post, so I apologize if I repeat myself. I experienced severe heartburn and nausea when my illness first started, and EGD showed inflammation all throughout my GI tract from the excess acid. I was put on PPI, something called a GI cocktail ( Mylanta, Viscous Lidocaine - to numb the esophagus - and Phenobarbital - I believe to make less acid - ) and Zofran. This treatment did help to heal the existing inflammation and eventually I was able to just stay on the PPI. Despite the potential for side effects from long term use I have been on the PPI for over 10 years and have less heartburn and no further damage from the acid. Due to the visible damage to the lining in my stomach they did extensive GI testing - EGD, Barium Swallow test, Gastric Emptying study, HIDA scan ( to check function of gall bladder ) - and it was determined that I had both IBS-D ( IBS with diarrhea ) and fluctuating gastroparesis, meaning I could go back-and-forth between the stomach being too slow in emptying and too fast - causing dumping. Here are a few articles that talk about dysautonomia and GI symptoms: https://chronicallysalty.com/2019/03/27/dysautonomia-and-digestion-how-pots-can-affect-your-gi/#:~:text=You may be reading this wondering if your,and incontinence%2C among others. Dysautonomia in a Nutshell https://www.dysautonomiasupport.org/gastroparesis https://n.neurology.org/content/84/14_Supplement/P1.280 This article explains that further studies may be needed in your case, you may want to show this to your doc: CONCLUSIONS: Subjective GI disturbance is common in patients with POTS, and these symptoms are not necessarily related to primary GI pathology. Symptoms are frequent and prolonged, likely decreasing quality of life. Given the importance of autonomic input to normal GI function, the same autonomic impairment that leads to postural tachycardia may also affect the enteric nervous system, leading to gastroparesis, abnormal gut motility, and esophageal reflux. Further studies correlating subjective symptoms with objective abnormalities of GI autonomics are needed.

@KiminOrlando - thanks for the Update. Sorry it didn't work for you, keep trying!