Pistol

I have hyperPOTS and I tolerate 1 cup each morning without any problems. I think it is up to you - if you miss drinking coffee and you would like to slowly introduce it back into your life then I would totally go for it. See what happens - that is all we can do. It's not like a cup will start a flare … as far as I know.

Hi @voxel - I am not sure what he means by "dysautonomia - not just POTS". POTS IS a dysautonomia! It sounds to me that he just does not want to get into it (typical!!!!). Yes - to determine which type of dysautonomia you have you should have a TTT. If you HR AND BP are elevated you should be evaluated for pheo ( blood tests and 24 hour urine sample ) Often a autonomic specialist will check your norepinephrine levels. These are the usual tests that autonomic specialists order to make a diagnosis. In the way of medications - that completely depends on your symptoms and the type of dysautonomia you have. For NCS and POTS they often use BB for the tachycardia, but not exclusively. There is midodrine, SSRI, calcium channel blockers … many options. Once you have a PROPER diagnosis ( good choice to get a second opinion! ) the physician should determine what is best for you. --- The surgery and bed rest could absolutely be the cause of your symptoms, dysautonomia is commonly a result of surgery. Slow reconditioning is the best treatment for that: try to extend the periods of being upright slowly every day. If you currently can be upright for 3 minutes before the symptoms start the get up 3 minutes several times a day and then increase the time you are up every time, even if it is just 15 seconds more. Also - sometimes try to sit down rather than lying down. You body needs to learn to adjust to standing up again and that needs to be done slowly but consistently. Also - drink plenty of fluids and see if compression stockings help, they will prevent the tachycardia and help you be upright longer. You can buy them online or from a medical supply store. You need to find your correct size though by measuring your calf and thigh. Check with a medical supply store, they can measure you. --- I hope all will be well and keep us posted on your progress!!!! Best wishes!

@DizzyGirls - I just had a lightbulb moment: what about a sudden drop in blood sugar? It will cause all of the above and it can occur several hours after eating ( lunch ). It can also be a symptom of gastric dumping syndrome or gastroparesis (both not uncommon for dysautonomia). Just saying!

@DizzyGirls - I was recently diagnosed with low ferritin and took liquid iron 125 mg and I tolerated it really well - no side effects at all. And after 3 month my ferritin came up from 4 to 21! So - if her labs show anemia - the liquid iron might help!

To tell you the truth - I used to think the same thing. At the beginning of my dysautonomia I had severe tachycardia and PVC's for years and I always thought that if the heart is a muscle and it has to work extra hard - will it not become bigger like any other muscle would? --- The answer - in my case - was: No. All functional properties of my heart are normal and there is no evidence in echo/ EKG/stress test/ cardiac cath/ labs etc that my heart has suffered any anatomical change at all from the years of "overtime".

Hello @Klotz_Forgotz - wow, what an incredibly sad story! I am sooo sorry about all of your struggles! About the weakness in your legs: I have POTS and often when I get bad I feel like my legs are made from cement. I am disabled now and do very little walking, but when I was still active I would even limp when my legs got that heavy. In my cause it was due to blood pooling, but my HR and BP reflected that. If your Vital signs are normal and you have this weakness/tingling feeling then I would worry that it is something other than dysautonomia. HOWEVER - you are going through such a bad time - I would not be surprised if it is not because you are carrying such a big load around with you. I know that when I get fatigued then my legs feel like lead. I know that you have brought these symptoms up to your surgeon, which is good. Don't feel like you have to be able to return to your previous level of functioning too soon - there is more than surgery that you are recovering from. Hydrate, stay active and do exercises to your level of comfort and stay positive! We are body, mind and soul - one needs the other to be a whole.

Totally agree with @StayAtHomeMom - anemia could cause fatigue and low O2, I am not sure about it occurring at certain times of the day though. Worth a checking into!!

I agree with @yogini - smoking or vaping have many serious side effects, I would definitely look into meds with the same vasoconstrictive effects but without the unhealthy side effects. There are numerous meds out there that help POTS patients with similar POTS mechanism.

Sorry @WinterSown - this sounds miserable. But it appears more of a neurological problem the way you describe it - not sure if the EP can help? I am wondering if you should not check with your neuro rather than EP?

@DizzyGirls - it is possible to have low O2, fatigue and nausea all together from extremely low BP. I know you said hers was reasonable when you checked it but I wonder what it is right at the time her symptoms start. Also - have they done a CXR recently? I would definitely get one to make sure there is nothing going on like pulmonary embolism or pneumonia . -- I'm so glad they are checkinh het thyroid more properly, finally! Shows you that MD's have their opinions but in the end they need to treat the patient. Best wishes to all of you!!!!!

@blizzard2014 - I am sorry about all of your issues. When you see the new PCP: everything should be explained in your medical record. You have a diagnosis, you are seeing a pain specialist, you have been taking these meds for a long time, you have never abused the prescriptions … there is no reason for him not to continue your treatment. But I am aware that many docs now have the right to refuse patients that take many narcotics. Before the initial appointment write everything down so you have all your ducks in a row and can " make your case". I have a B-I-L who is disabled from back problems and he takes pain meds chronically. His pain clinic switches his meds every month - Oxycodone then Percocet. This helps not to build up a tolerance and needing to increase the dose of the meds because the body needs more of it to be effective. He has been on the same dose for years now and the meds are still working ( of course he still has pain but it seems tolerable most days ). --- Don't panic - it will be OK! Let us know how it goes!!!!

You have to have your cardiologist determine why your BP is high. If it is from vasoconstriction then florinef will make it worse. I have hyperPOTS and Metoprolol did not help because my high HR and BP was caused by vasoconstriction. If you have blood pooling or red/blue feet than you might be suffering from vasodilation ( low BP ). If you frequently experience cold hands and feet than you probably suffer from vasoconstriction ( this also often causes high BP ). I myself would question the cardiologist on why he prescribes the florinef with high BP before I would take it.

@WinterSown - that is exactly what happens to me when I pass out in my docs office. And always I am saying: I'm OK! It happens all the time!" because the nurses always get so upset. I already passed out in my autonomic specialists office as well as at least 10 times in my PCP's office and once at my cardiologist. ( I am not even telling you about the times at xray, MRI, OR, ER …. and always the same response when I wake up : "I'm OK- did I scare you?" It's automatic! … I hope they can get you back to your usual soon - best wishes!!!

The only thig I can tell you is that we all have out unique little quirks. In my case I used to go WAY up in both HR and BP when standing but could level out when walking. I do believe it must be because of the muscle pump. I still am better walking but cannot tolerate standing, however - if walking I will pass out if I do it too long. I am sorry that you are having to do the " " "number-game " - meaning you have to worry about the numbers rather the symptoms. But I am sure that if you have an experienced autonomic specialist he can tell you what is what?

Hi @Pippie yes, that sounds pretty typical for POTS. I get nausea and diarrhea with tachycardia and usually have diarrhea right before passing out. When the sympathetic NS kicks in then it affects your whole body, not only your HR. I have IBS as well and it is caused by POTS. I also have severe GERD from it and - as of recently - gastroparesis. The good thing is that ( although we cannot be cured ) there are many things that help these symptoms. Once you are on the right combo of meds for POTS - and you are on your way if you are going to Stanford - you should find some improvement. Wishing you the best - don't give up hope!!!!

Hi @Potsie1990 - as far as I understand the criteria is sustained HR increase within 10 minutes. I am glad that you are getting autonomic testing - they will know how to interpret the TTT and hopefully other tests. As with many other POTS people - a TTT is NOT the golden standard, a good autonomic specialist will interpret your SYMPTOMS before the TTT results. I had 2 TTT's and they both showed something different, the last one was even misinterpreted by the cardiologist doing it. This should not be the case for you since you are going to an autonomic clinic. Best wishes - keep us posted!!!!

One thing I have learned since getting serious symptoms from POTS: any chronic illness will make us more aware of changes in our bodies. They may just be regular age-related changes or they could be serious problems - but we always seem to notice even the slightest change. I think it is because we have experienced that even small things can turn into a flare with dysautonomia. That is actually a good thing: in my case I am at my PCP as soon as I get the sniffles or anything that could cause me to go into full-fledged POTS action. I think that is called being pro-active? --- Wishing you the Best!!!!!

When I get in a crowd - which I avoid - I get that same feeling. Often it leads to syncope or even seizures ( autonomic type ) if I do not retreat. Unfortunately that is the reason why I avoid crowds or gatherings, I only last a very short time. In my case it is because the noises, stress and even communication with others causes an abnormal release of norepinephrine, which causes an immediate fight-or-flight reaction in me. I really have not found any way to conquer this - except avoiding crowds. I hope this is not the case for you!!!!! Best wishes!

I have went to chiropractor before for spine issues but not for POTS. I know that if you go for a long time with musculo-sceletal problems then an adjustment can cause pain. If you are in extreme pain though you should notify your chiro, you may need an xray or another adjustment.

Well - this is not exactly advice but … WHY will no one treat her if she is that symptomatic? Where do they want her numbers to be and what are her numbers? ( I am sorry - I just get so frustrated when people are sick but don't get treated because they do not meet criteria in their numbers … this is not math! ) --- Definitely mention these episodes to your cardiologist appointment, often tachycardia and nausea go together. It could be that the ER version could help her, it is possible that at the time of her episodes the concentration of her BB is low. That happened to me when I was on a BB that had to be taken twice a day - I would get tachycardic in the late afternoon. Switching to a ER version helped that. I wish you good luck and please let us know how the appointment goes?

Hi @sheal - yes, yes and yes. I cannot drink plain water, it gives me nausea and heartburn. I have found that carbonated water or - better yet - gingerale work really good for me and provide adequate hydration. Also sucking ice cubes or eating jello works. And popsicles, I make my own. --- When I am not able to exercise because I don't feel good I have learned not to push myself, but when I feel good enough but don't want to then I DO push myself. Instead of doing one session I divide them up over the whole day or even the whole week. I do my arms one day, my legs another and then my core another dy. I also like to do my exercises while watching a TV show and do them during commercials, that really works for me. -- What is your exercise routine and what are you able to do?

@CuriousThinker - this happens to me as well. I was told it is due to a sudden drop in BP causing circulation issues in your ear. The situations in when you describe it happens would lean that way as well. Try to avoid activities that could stimulate the ANS, such as straining, lifting, blowing etc. My sister gets this for days on end and needs to see an ENT for it - that might be a good idea for you also?

Often when symptoms occur at a certain time of day consistently it is possible that it is caused by medications. Is she taking any new meds or an increased dose of meds?

@WinterSown I have chronic issues with sacral pain and numbness/pain both buttocks and thighs. MRI showed arthritis. I also lost the curve in my lower back, it's straight as an iron rod. PT can work for these issues. If you loose strength though than I would definitely recommend a visit with your doc of choice, there may be something else than arthritis going on. Best wishes!!!

@Yulunga - I am happy that they are taking your symptoms serious. I have found that it is not even all that necessary to have an experienced autonomic specialist as long as you have a physician who believes you and tries to help you. I fired 4 cardiologists who ignored and even dismissed me until I found the one who agreed I had POTS but did not know how to treat it. That's when I saw a specialist who diagnosed me. The 2 years before diagnosis I had only one person who knew what I was going through and helped me as best as he could - that was my PCP. Without him I don't know where I would be … About underlying causes for POTS: yes, sometimes finding and treating the cause can help fix POTS, but not always. For example: if you look for a cause of joint pain then you can determine if it is RA or OA - but you still have to treat the symptoms and they do not go away. I have hyperPOTS and it runs in my family, so it most likely genetic. But that does nothing to fix it. If it is auto-immune or from MCAS or from neuropathy - then you know WHY you have it and treating those conditions can help but not necessarily. In your case I hope the elevated cortisol level will lead to an effective treatment and that you will soon feel better. Hang in there - you are doing a good job!