Pistol

I just found out that stew is a great thing to cook when you can't stand long: cut everything up ahead of cooking - rest - shake meat with flour in bag and brown ( while sitting ) - add onions and brown ( while sitting ) - add spices and liquid, cover, turn down the heat and - rest. After an hour or so - if brain fog let's you remember or else the smell reminds you - add more liquid and veggies, cover and rest. After 30 minutes ( you will remember if you set your alarm ) spice it up again and turn it off to cool. … If you remember - eat it while it is hot. If you don't - it will still be good the next morning. This is a very forgiving dish that can be accomplished with both POTS as well as brain fog from POTS. And if you have NCS on top of it ( like me ) - well, then you just have to keep getting up to finish it. ( It does not burn easily!!! ). Happy stewing!

I had 2 TTT and had saline IV with both. Usually they do this to have an access to your circulatory system in case they have to give you meds ( like isoproterenol ) or if there is a life-threatening emergency during the test. It does not affect the outcome of the test. It is normal procedure. --- It is possible that the response you had was due to the medicine being given to you due to you not responding. There are parameters of how you are to react to the isoproterenol in order to diagnose POTS, POTS patients have an exaggerated response to it. I would listen to your doctor that did the testing and ask for the transcript of your TTT so you can see for yourself what happened. Also - you should have a follow-up appointment scheduled with the doctor that did the TTT - write down all of your questions and ask him at that appointment. -- Best of luck to you!!!

If you are not eating then you MUST be evaluated. MCAS can be diagnosed with labs as well as urine tests by any allergist. It sounds like you are afraid to eat, that is a problem and you definitely need to see a doc for this. They can do labs to make sure there is nothing metabolic going on or other causes for this. Please - have a physician take a look at you and let them do blood work or any other tests they feel need to be done. If the sensations you feel are anything serious they can find that out with tests. Do not wait until you see a specialist - if you do not eat there may be things going on due to nutritional deficits that any doc can manage. Best to see your PCP until you see a specialist.

@CalicoCat that is not how BB work! They are used to TREAT tachycardia! How low is your BP that they do not want to use BB? You said your BP was normal when measured - there is no reason for not taking a BB in my opinion. --- Is it possible to find another physician?

I totally understand your dilemma. When my parents got to be of age to need help my siblings helped. I myself would not have been able to - I need my husband to do most things for me. If I did not have my brothers and sisters to take care of them I would have had to look for outside help. ANY type of stress can affect our symptoms and often we have to choose between what we can and cannot do. If you can not do for your parents what you think you should do ( or what others think you should do for them ) then you have to weigh what is more important: your health and family or their ( your parents ) wishes. You are not neglecting your parents if you are not able to care for them - there are many resources for seniors to get help. Remember - you cannot care for others if you cannot care for yourself. Decisions about the care of your parents often come dressed in guilt - but it does not have to be that way. Best wishes for you - and I hope your husband understands that this is a very stressful and taxing time. He should cut you some slack.

Ask your doc to do a poor-man's-tilt in the office. Another name for this is orthostatic vital signs. They take your BP lying, sitting and standing ( after 1, 3 and 5 minutes of standing). If your HR goes up at least 30 BPM after standing and stays there then you might have POTS. A true TTT is usually ordered to diagnose POTS, usually cardiologists do these.

@bombsh3ll - once I get this bad it is difficult to stop. Sometimes retreating into a dark, quiet room and lying down helps. Medications do not help for these flares, but I take a ton to prevent them. I take diltiazem, carvelidod and guanfacine for the BP and HR, Ritalin for brain fog and Lexapro, these are my POTS meds. But when I get the above symptoms and cannot stop them then I have to get IV fluids. That fixes everything for me. ( I am getting a port next week and will be able to get fluids at home ). I know that you are having trouble getting them in the UK but if you find someone to order them you would be surprised how good they work!!!! --- Regarding the Ritalin - I thought this myself before starting it but it really works and I have no side effects. My specialist - Dr Grubb - wanted me to go on modafinil but my insurance does not cover that.

@andybonse - regarding your question about cerebral vasoconstriction: I have hyperPOTS with episodes of severe vasoconstriction caused by sympathetic overcompensation. When I get this then I get the following symptoms: cold hands/feet, chills, tremors, excessive yawning, confusion, slurred speech, syncope and seizures. I usually take seizures rather than syncope from vasoconstriction, syncope I take more if I get vasodilation.

@Mbritt724 - an autonomic specialist is supposed to diagnose and treat you for autonomic dysfunction. They may specialize in one area but a true autonomic specialist will be able to pinpoint what type you have and make treatment recommendations. If they only see patients with POTS then they are not autonomic specialists - they may CONCENTRATE on patients with POTS but they are not general autonomic specialists. If you would like to get an exact diagnosis then I would see one of the specialist centers.

I am sorry you have not been able to get proper care! Have they ever considered a beta blocker for the high HR? Starting a low dose BB and increasing as needed might help with the tachycardia, although it could cause some fatigue initially. --- I am not sure if this is approved in your country but you sound like a good candidate for Saline infusions. They are life-saving for me!! With the high amount of salt you are taking the infusions could really help you! There is a article about the benefits of saline infusions in the treatment of POTS listed on thedysautonomiaproject website. You can print it out and give it to your doc so he can see for himself that this is a good and acceptable treatment for your symptoms. --- I wish you the best and I hope you find relief soon!!!!

My first TTT showed the same as yours, syncope after Nitro. They said it was NCS ( also dysautonomia ). Salt, hydration and Metoprolol did not work - I kept passing out ( I cannot have compression stockings ). I ended up seeing 5 cardiologists and had tons of studies done, including a second TTT. In the end my current cardiologist agreed with POTS but admitted that he did not know how to treat it. Then I got in with autonomic specialist and was diagnosed with hyperPOTS and he is treating me still. --- The reason I am telling you all of this is that ,as long as you feel the symptoms are controlled you should be OK, but dysautonomia changes and each form requires a different approach. NCS and POTS have the same treatment approach but they do change in symptoms over time. In my case it was VERY important to find out the type of POTS because it gets treated so differently from other types. So - knowing what TYPE of dysautonomia you have can make a big difference. Good luck!!!!

@Kelleyhome - I cannot take NSAIDS due to gastric issues but I do great with Turmeric/Ginger/ Black Pepper. It has actually been proven by modern medicine to work and I do not have any severe GI issues except maybe some occaisional heartburn from it.

Don't worry about being symptomatic at the appointment. When I saw my autonomic specialist for the first time I told him my story and listed all of my symptoms and he knew that I had hyperPOTS just based on that ( he confirmed it with testing ). Yes - I get low temp and elevated temp accompanied by chills or sweats - it is from dysautonomia. Best to make a list of all of your symptoms, regardless if you feel they are from dysautonomia or not. The doc will need to hear all of them so he can decide what is from dysautonomia. Best of luck - I know this appointment is very important. Keep us posted!!!

Sounds like a plan - and I hope all will go well. You did your homework - good job! --- Best of luck!!!! Keep us posted!

I would just simply tell your doc how you have been feeling, why you think it might be POTS and show him your numbers. Then ask him to do a PROPER orthostatic test - demand that they do not just take your Vital signs in different positions - they have to take them after 1 and 5 minutes of standing ( as well as immediately, but any one reading does not mean anything unless they take them at different stages of orthostasis ). And - I hope your chosen doc will understand dysautonomia?

Well - it can be related to either. Of course the apnea will prevent you from getting proper REM sleep. But the dysautonomia also causes this due to the adrenalin levels not falling when they should I am hyperadrenergic and I wake up every 3 hours and am right awake. That is when normally the adrenalin goes down and you can enter the REM stage. I am sorry about all your problems. I definitely understand how you can't use the BIPAP - I could not sleep with that on either. However - it would be a good idea to try and get used to it. My friends husband has to use one and it took him a long time to be able to sleep with it on. But today he is used to it and sleeps much better.

@blizzard2014 with everything you have going on I would apply for SSDI. Don't worry about the records that the docs have - just fill out the forms accurately and tell them what has been going on with you. They ask a lot of questions about your abilities and it sounds like you really are too sick to work. They most likely will deny you and you have to appeal but that's the nature of the business. The sooner you apply the sooner you will get it. --- Question: have you ever seen a pain specialist for your pain in the leg?

@blizzard2014 - when I get this bad I either go get fluids ( in my case they often correct the symptoms and the BP ) or - if BP goes up like that after the fluids - I get my meds reviewed. I was in your exact shoes in July and was hospitalized for fluids. The BP came down but after 2 days went back up again. I called my autonomic specialist and they increased one of my meds ( Diltiazem, a calcium channel blocker ). I have been much better ever since. What do you take for your BP? It sounds like something to dilate your blood vessels would be an option - check with your doc. -- I get the headaches in the back of my head with high BP too. And - as with you - when I go to 130/100 I am ill from it and when it goes to 150/100 or higher I take seizures from it. 140/114 and the symptoms you have needs to be addressed. Definitely go see your doc as soon as possible - I would even recommend not going to work with readings like that. Best of luck - let us know how you are doing!

Well - I will tell you what I had done: most important is rule out pheochromocytoma in blood and urine. I also had autonomic testing dome, 2 TTT's, echo, stress-echo. stress test, numerous halter monitors including an implanted one that recorded for 3 years, I had serum catecholamines ( which confirmed hyperadrenergic POTS ), EGD, gastric emptying studies, MRI's, CT's, blood work: thyroid, autoimmune panel, all the regular labs, B12, iron panel, VitD, I had longterm EEG for syncope and seizures ( confirmed cerebral hypoxia from vaso constriction ), neuro-psychological evaluation for brain fog and memory problems, neurological evaluations and most importantly - seeing my autonomic specialist. I am sorry that there no specialists where you live - maybe you can ask your local doctors to check for at least the deficiencies and aslo - IV saline infusions have been proven to be very effective for POTS symptoms that are not controlled by meds or other treatments. Here are some common meds prescribed for POTS: SSRI/SNRI, beta blocker, Midodrine, Fludrocortisone, Pyridostigmine, Ritalin or Modafinil … your doctor's might be able to pinpoint which type of POTS you have and then try the meds that are usually well tolerated for that type of POTS? --- I truly wish you only the best. The best I can recommend again is to listen to your body and rest when needed, be active when possible, drink fluids, load salt and try compression garments.

All the symptoms you describe sound like dysautonomia symptoms. Who have you seen ( cardiologist? ) and what have they prescribed for your symptoms? Are you on any meds? Are you doing fluids, salt, compression? --- Yes, POTS symptoms commonly flactuate. Good and bad days are normal, even weeks of either are common. The most important thing is to listen to your body and rest when you get tired and be more active when you can. Have you seen a GI for your stomach problems? I would highly suggest that because the digestive issues can be quite severe in POTS. The cracked lips lead me to suspect you might have deficiencies, like B12 , ferritin and Vit D. These often are low in dysautonomia. Ask your PCP to check them for you. I felt much better after supplementing all of these. --- There is no specialist in my state either, I drive 8 hours each way to see my specialist ( Dr Grubb ). It's worth every mile! He has a one year waiting list but he spends a lot of time with you. And after you are established you can send him questions or concerns over the portal and they respond within 2 days. I only have to see him every 3 years in order to stay an active patient, of course if I get bad or need meds adjusted then I see him. But there are many physicians listed on the physicians list on this site, you might find someone closer to you? If you don't feel that your current docs understand your condition or do not know how to help you a trip to a specialist would be wise, even if it is far. Many members here travel quite far for their appointments. Best of luck - please keep us posted on how you are doing!!!!

In my case I improved enough on Lexapro that I can do mild exercises. The anxiety for me comes when my norepinephrine soars and in between that it's well controlled. Now my sister, who also has POTS, responded amazingly well to Wellbutrin. -- You mention that you had less anxiety on Celexa but also that it was hard to take it because it gave you anxiety. I am not sure if I understand that correctly - did it make the anxiety worse? Or were there other effects from it that made you not tolerate it? -- There are many SSRI's out there and if one is not good for you another one might. If you are able to exercise and you can do deep breathing and meditation etc to control the anxiety it is worth a try. It was never enough for me but it works for others. Best of luck!!!

I too get the feeling of pressure in the back of my neck with mild pain going up across the top of my head. I belive it must have to do with circulation changes to the head because I also feel fatigued when that happens. ---- @StayAtHomeMom - about constantly getting a poor mans Tilt dome wrong by docs ( happens to me all the time as well ): the dysautonomia project website has a video and instructions on how to do orthostatics proprerly. I have printed it out and take it along for appointments or ER visits to show them. Mostly they do not wait the full 5 minutes after stanfing, they just do the one minute after, or don't even wait that long.

@bombsh3ll - thank you so much! I will let everybody know if I am improving. Right now I can feel when I start getting bad but I have to wait until I actually show symptoms before I can get fluids. With the port this will all change - I will be able to be pro-active!! I give you an example: when I get bad I start with the usual: dizziness, PVC's, fatigue AND feeling hyper, cold extremities etc. If I let it go I will go all the way to having to crawl, taking seizures or passing out, high BP. fast HR … As soon as I get fluids ALL OF THAT goes away. The ER of course does not feel any emergency from any of that because it is not a new symptom. But NOW - with the port and home infusions - I can get fluids as soon as I know that I need them, I can cut the malfunction off right at the start! --- I am sorry that the UK does not approve of IV fluid therapy for refractory POTS. Many docs here do not either - they feel that if you can drink you do not need fluids. But what they do not get is that in POTS it is not necessarily hypovolemia - in my case the fluids re-establish a pressure within the vascular system that my body is unable to create on it's own. It is more of a vascular pressure thing rather than a hydration issue.

My problem is that I cannot tolerate liquids very well. I can tolerate the discomfort from eating an egg or 2 pretzels but I cannot tolerate a stomach full of liquid - especially water. It gives me the worst heartburn. I do tolerate gingerale or low-alcohol beer ( of all things! ) or even carbonated water.

@KiminOrlando - thanks! If I do not get better than I will ask my GI about it. They are really accommodating - be well yourself and take care!!!!!