Pistol

I agree with @Scout. I have hyperPOTS for 10 years and do not expect to ever go into remission but I do have times that I feel better than other times. I do know of some members here that have hyperPOTS and can go years without significant symptoms but then get flares inbetween.

@Derek1987 - I get this every time I shower or am exposed to heat. I believe it is caused by the body adjusting to extreme temperature changes with vasodilation and then acclimating. Sometimes this phenomenon for me can be accompanied by feeling faint or even fainting.

Dear @Rena - if you suspect that you are suffering from one of the dysautonomias and you do not feel cared for properly by the physicians you are currently seeing you may want to consider a specialist in the field. Our physicians list provides SOME contacts for physicians specialized in autonomic disorders. Often they are cardiologists or neurologists. You can also contact your insurance and ask for a referral contact for autonomic disorders that is on your plan.

@racingheart77 - since I am limited to minor physical activity it is rare that I exert myself, like running. but when I do I get PVC's and my HR and BP go way up. That many palpitations could sinply be from the sheer strength of contraction due to high BP and HR, in other words you can feel them because they are so strong. This has happened in me before. But it can also be an arrhythmia ( not necessarily a serious one ) that was triggered by the running. Good that you will be seeing your doctor, a monitor would be a good option. Let us know what he says!!

Hi @Jwarrior77 - in my own personal case I usually feel strong heartbeats in my neck when my BP is elevated and when I feel weak/faint my BP is low. Are you able to check your BP when you feel these sensations?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3349351/ https://www.anesthesiaconsiderations.com/ https://print.ispub.com/api/0/ispub-article/13170 https://www.researchgate.net/publication/6621500_Postural_Orthostatic_Tachycardia_Syndrome_Anesthetic_Implications_in_the_Obstetric_Patient @Y.Alice.D - I had several surgeries since onset of POTS and always had a certain anesthesiologist assigned who was experienced in the special considerations of anesthesia during surgery. Most other anesthesiologists were too afraid to do anesthesia on me. Post-op CAN be difficult, usually I need several weeks of reconditioning to regain my pre-op functional status. Administration of IV fluids before, during and after surgery has always been very beneficial to me.

I do not believe that ablation is used for Vtach, only for SVT.

Hi @Rima - yes, I have a flare due to allergies. 2 months ago I started to get bad, with fluctuating BP's, crushing fatigue, dizziness etc. Nothing had changed but I had some mild seasonal allergies, which I never really had before. I researched this and found that histamine causes vasodilation which in us can cause a flare. I saw my autonomic specialist about it and was told to start Claritin or Zyrtec and increase IV fluids to three times a week ( I have a port and usually get them once a week ). I have improved some on the Claritin in regards to BP, although still get hyperadrenergic storms frequently. I was told that I should get back to my normal once allergy season is over. In your case - since it is due to pets - you may not see that. Have you considered an allergist? Maybe they can give you allergy shots for the symptoms or there are stronger meds you can take for your allergies?

@Scout - the surgery is very simple and no - there are no wires. A cut, then they make a tiny pocket in the muscle and slide the device in ( which is really tiny ), secure it and sow you back up. Hardly any pain, maybe a little soreness. The cardiologist will set the device to what he wants as parameters, i.e. record any HR under 30 or above 180. There are no restrictions when having the recorder, you can do anything. I got it because I kept passing out and having seizures and he wanted to see if my HR ever drops before these events, so that I could get a pacemaker. But unfortunately in my case everything always goes up, so no pacer for me. The good part about this device vs conventional halters is that it actually records what happened BEFORE you push the button. Ususally when I pass out I don't get to push it until I regain my consciousness, that could be a while. But with the ILR I push it and it marks the event 5 minutes prior to me pushing the button. This way we can really see what happened and led to the event. Since having had the device I am a strong supporter of it rather than the old halters. And it caught atrial flutter, which I was not even aware I had! After three years the batteries ran out and it was removed in a simple brief procedure.

@Scout - I do not have V-tach but know others who do and I would go to the ER when that happens. Anything over 6 beats is concerning. Please call your cardiologist as soon as he is available and go to ER if this happens again. They can monitor it and give you medication to stop it. Maybe your cardiologist would consider and implanted loop recorder? I had one for three years - it is essentially a event monitor that gets implanted in your chest and monitors your heart beat all of the time. You push a button when you have symptoms and it marks what happened in the 5 minutes before and after the event. It also records and alerts you if you have an arrhythmia that you are not aware of. Every week and as needed you send the results over a small device directly to your cardiologist for review. I had a few episodes of atrial flutter when I had it ( it ran out of battery and was removed ). The surgery is very minor and very safe and having the device takes all of the guess-work out, plus it gives you and your cardiologist ease of mind.

@Clueingforlooks - lifestyle changes are mostly avoiding overstimulation and staying at home, this has helped both POTS and GERD. Of course - I am disabled, so I can do that. Also following a daily routine of rest and activity/ exercise has been very effective. My friend - who suffered all of her life from severe GERD and IBS and has been unaffected by GI medications - just had a fundoplication and she is doing great. She told me she just used hot sauce for the first time in forever and had no heartburn. Have you talked with your doctor about this procedure before? I am not sure if this would be something they would recommend for you but it does not hurt to ask!

@Clueingforlooks - I went through the same thing. EGD showed I was essentially being eaten by stomach acid yet Gastric Emptying study was normal. My GI said that I had digestive problems b/c my digestion was either in overdrive ( GERD, diarrhea ) or too slow ( gastroparesis, nausea, vomiting etc ), both caused by dysautonomia. I was able to get both somewhat controlled by medication, diet and lifestyle changes.

Hi there Random-Symptom Man. It sounds to me that you are not controlled with medication. Are you seeing an autonomic specialist?

@outofadream - I am sorry to hear that your friend is going through such a tough time. I can relate, probably many on this forum can. Dealing with a complicated medical condition is very frustrating, for both patient and doctors. Add to the mix the fact that we are unwell and it can get ugly. In my case, when I became ill with dysautonomia and started to faint, take seizures, racing heart with high BP etc out of the blue - I had no clue what was wrong with me, and neither did my PCP. But both of us worked together, I did my own research and he ordered the appropriate tests and eventually ( although having went through several ignorant and uninformed cardiologists ) I was referred ( per my request ) to an autonomic specialist who was able to diagnose and treat me. Thankfully I have my PCP by my side who has faught with me for 10 years now. It is essential that your friend has at least one physician that is her home base, that keeps track of all of her tests and results as well as coordinates her care. For most people that is the role of the PCP but to some it can be a specialist. My M-I-L has many health problems and sees 7 specialists in different fields. Her husband keeps all of her records, goes to all of her appointments and informs himself about all of her diagnosis. Recently they had to switch PCP's and this came in very handy. Does she have a friend or family member that is willing to do this for her? The worst of being ill like that and at the mercy of specialists is being alone in it, so having someone to lean on is essential. Often we feel too unwell to take charge of our own health. With her many symptoms it may require several doctors to find the cause, it is like detective work, so it is not surprising that she is handed from one to another. She should make sure she directs all of these specialists to communicate with her PCP. Whenever I see a specialist I follow up with m,y PCP after that visit to ensure he is aware of the findings of the specialist, this has been very important for me. I hope she will get some relief and answers soon. Best wishes - Susanne

@MTRJ75 I saw an allergist and asked to be tested for MCAS. It required me to travel to a university hospital and give blood and urine samples. Thankfully I tested negative but since I have seasonal allergies that recently caused my dysautonomia to worsen I follow the same treatment recommended for MCAS - H1 and H2 blockers. This has greatly improved my symptoms.

@MTRJ75 - the issues you are describing seem complex and specific. MCAS can be tested for by an allergist and your specific concerns should be directed at your treating physician. In my own case seasonal allergies have worsened my dysautonomia symptoms greatly and I have found improvement by using H1 and H2 blockers despite having negative MCAS testing by an allergist.

@katcanny I take Ritalin, which is also a stimulant. It has helped me greatly with energy and fatigue. I was supposed to take Modafinil but my insurance did not cover that. Since I have hyperadrenergic POTS I was worried in the beginning that it would cause me to become hyper but I tolerate it very well and have been on it for years. I have learned that we have to try all medications to find out how they affect us. Be brave!!!!

Diddo. I too get very giddy and stupid when my PP is low, my husband always tells me to lie down when this happens b/c he can tell by looking at me and by the blank stare I get on my face. Resting does help but often it gets so bad that it puts me in bed for the rest of the day. IV fluids ( I have a port ) rectify it immediately.

@GinnyIckle I take Turmeric for joint pains as needed and it works well for me.

@KiminOrlando huh, isn't that the truth!!! Being disabled is a fulltime job!

@KiminOrlando - I have not tried Melatonin but I know it is a neurotransmitter, so it very well may positively affect your dysautonomia. I hope it continues to give your relief!!!!

@MissMermaid - yes, you absolutely need to be the one in charge. I fired 5 cardiologists before finding the right one and I have a wonderful PCP and my autonomic specialist, who I have to travel out of state to see. this team of physicians works together for me and always communicate with each other about any changes. But when I first became sick neither I nor my PCP knew anything about dysautonomia and I did a lot of research about my symptoms before requesting a referral to the specialist. I was able to be diagnosed in less than 2 years because of being proactive and not being intimidated by ignorant or uninformed doctors. Our list of physicians may guide you to a doctor experienced in dysautonomia that you could see, hopefully not too far away. Not every state has a physician specialized in POTS, so you may have to travel. PM me if you need help!

@Amalia01 - this appears pretty standard. The function of your PCP is to coordinate your healthcare - referrals etc. The PCP usually gets a copy of all of your visits, test results etc. This is because he is ultimately responsible for making sure you get seen by the proper specialists. He is also responsible for overseeing all of your test results, labs, xrays etc and acting on them if they are abnormal. So - yes, it is standard practice to include your PCP in all specialist visits, that is his function.

@MissMermaid no, you are definitely not the only one. I used to take seizures when my BP went up too high and faint when it went too low, so I was very anxious about my symptoms all of the time. I suffered first from anxiety related to my illness/symptoms and then from depression. With time, proper medication to keep my HR and BP in check and becoming disabled ( which allowed me to adjust my daily routine to the needs of my body ) I have found balance. But this can - in some of us - be achieved without becoming disabled. But IMO it does require proper medical treatment - and that can take years of trial and error. A experienced autonomic specialist seems an absolute necessity to me, I was not able to find proper treatment before seeing a specialist.

@MissMermaid you mention the anxiety you experience when you have pvc’s. I have hyperadrenergic pots and pvc’s and anxiety in my case are both a result of excessive adrenaline output and happen at the same time. In some people pvc’s cause anxiety and in others anxiety causes pvc’s, it is hard to pinpoint what causes what. But they do go hand in hand. For me medications and providing a lot of rest periods have been very helpful.