Pistol

Vitamin C is water-soluble, so taking 1000 mg cannot hurt you. If it helped anyone than I am glad for them. I was always told to get the vitamin from food rather than from supplements.

I have hyprPOTS and am perimenopausal right now. I was told by my autonomic specialist that POTS symptoms can get worse during menopause. I myself have not really seen it getting worse - just changing in severity. The symptoms changed for me ( a lot more GI issues and anxiety related to syncopal episodes ). My BP has been running higher so I had to increase my meds. Plus - weight gain and more exercise intolerance. So - decrease salt intake for me.

I have been caught "on tape" both passing out and having seizures. Syncope is usually caused by a sudden drop in BP ( which has been recorded shortly after an event - 80/50 ). In my case I also have been recorded having high BP after - as well as shortly before - seizure like activity ( 150/90's ). When I get episodes of extreme orthostatic intolerance I usually fluctuate really fast. So - I do believe that in many cases the BP/HR taken AFTER the episode are not accurately showing what went on DURING the episode.

I have to agree with @bombsh3ll - although I myself have not tried the program I know people who have ( for reasons other than POTS ). I have no doubt that this program can help some but I have not seen any evidence of successful treatment in the people I know that I personally know that have tried it.

Hi @voxel - that I can share my experience on. When I first got sick I tried to continue working although I kept passing out at work. Then they gave me a desk job and I continued passing out. Often I was too ill to go to work so I used up a lot of FMLA. In the end my doc made me take off long stretches at a time and I used up all of my FMLA. It goes on a rolling calendar, so if you use 3 weeks in January you have to wait until next January to get them back. Once I exhausted all of my FMLA they even gave me 3 extra months of leave so I could keep my benefits. But as of May 2013 I had to quit work all together. I had long-term disability through my employer as well as short-term that I had selected. The short-term paid for the first 6 months and the long-term for everything after that. But they made me apply for SSDI ( because of course they don't want to pay me until I am 65!! ). They supplied a lawyer and all. After I got SSDI they still pay a small amount every month. - So - yes, thank god I had both short-term and long-term. But don't forget: long-term disability benefits usually do not go into effect until after 6month of missed work. Short-term disability insurance covers the immediate needs. Also - once you use up your FMLA you are no longer guaranteed that you will get you old job back. … Best of luck - I hope you will not need any disability benefits!!!!!

@dancer65, @StayAtHomeMom - I smoked for many years and tried to quit several times. When I had my daughter (13 years ago) I just ended up quitting cold turkey, although my husband continued to smoke. It was simply that she gave me a reason NOT TO WANT to smoke anymore. The need to quit was stronger than the need to smoke. And I never looked back - once the habit is broken it is done-and-over with. And I feel so much better since!

I just find it strange that now we have to "self-medicate". But if it works - we all operate differently. I am just thinking - since nicotine is a vasoconstrictor: would a patch not work better, since it would put an even amount in the blood stream? Rather than vaping or smoking, which gives little bursts of nicotine? ( I am serious! )

I am glad you are seeing an endocrinologist since you have elevated renin levels. It sounds that with your symptoms that is the first route I - personally - would also take. Be well!

I am reading this post and all I can think is that-- now we are supposed to smoke and drink to treat POTS? I think not!!!!! ( Just my opinion ).

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!!!!