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I just would like to encourage everybody to get their vitamin D and B 12 levels checked. I have had a deficiency in B 12 since childhood and have been diagnosed with vit D deficiency several years ago. I take B 12 shots monthly and vitamin D by mouth. Lately I had severe POTS symptoms and my PCP ordered very strong D supplements ( 50,000 units weekly in addition to 2000 units daily ). This immediately improved the fatigue, joint pains and palpitations which then made it possible for me to be more active ( I was bedridden ). I now have a bit more energy and do mild exercises daily when I can get out of bed. Several members on this forum have mentioned vitamin deficiencies in B12 and D in the past and I wonder if it might help others that are not aware of their own deficiencies?

I had 3 holter monitors when I first started having POTS symptoms, they all showed either fast or slow heart rates. After my POTS diagnosis I had an implanted loop recorder for 3 years which showed the same as well as a trial flitter (this is not POTS related). --- I know of many POTS patients whose symptoms get worse with pregnancy but then get better again. I wish you will feel better after the baby. Good luck - these monitors are very helpful in diagnosing irregular heart beats.

Have they checked you for Mast-cell-activation- syndrome due to your flushing? --- I had fought my POTS symptoms to where I was told by my employer as well as by my doctor that I had to stop working. It was very distressing to me and my family but since I realized that the symptoms are too great to keep up with normal activities. However - many people continue working with dysautonomia, if properly treated you can function. It takes a long time of trial-and-error medications before you find the right treatment, which is just as frustrating for your doctor as it is for you. Having a diagnosis of bipolar makes it that much worse. If you are not fully trusting in your physicians explanations or treatment you may need to see a physician that specializes in the treatment of dysautonomia?

I have not been able to explain it any better than showing them this site or the dysautonomia project book/site -- it is too weird/new/uncommon. Even physicians do not understand and are - still - just starting to get it. If the medical community does not understand it we probably should not expect others to get it either. We just have to find people who TRY to understand and stick to them - plus this forum is very helpful!!!! I still do not know how to explain POTS, sometimes I say it is my heart, other times it is the way my brain communicates with my heart and then other times yet it may have to do as a " nervous condition " (my least favorite!) We have to be patient with our family/ friends s well - it is not easy for them to understand either. That's why we need to EDUCATE as much as we can. But most of all - we need to try to go on everyday. ( Next time I loose hope I will need to read this post myself )!

I had POTS for many years now, am disabled by it and endure frequent flares. I am blessed with understanding, patient doctors and an "experienced" husband who is equally understanding. However - other family members do not understand why I just cannot function since I " look so good " ( who hasn't heard that one over and over? ) --- Recently a close family member was also diagnosed with POTS after many years of having symptoms. Although she always was sympathetic towards my situation she never truly got it. Now she told me that she can't believe how hard the symptoms are to live with and that the ignorance or others makes it that much more difficult. She said that POTS patients seem to be so quietly brave and she now sees that everything others take for granted is a major accomplishment in many cases. --- I wanted to pass this along because I know that we all have people in our lives who just don't understand what we do to go on every day. Keep up the good work every one!!!

One thing I have noticed is that when I get a flare ( and then get as desperate as you describe ) I should NOT mess with my meds. Whenever I do it makes the instability worse. Wich makes sense: how can we expect our already messed up system to balance itself when we give it mixed messages by changing dosages? Although I know how frustrating it is - the best thing I have found is to just let it blow over - and know that it WILL get better. I just "survived" a flare myself and was almost loosing hope - but it did get better. Hang in there - and let your family know that it's not in your head and you're not lazy or whiny : this is what POTS looks like and it is real. Any illness makes us sick as a dog, much worse than people that do not have POTS. I wish you a speedy recovery!

Thank you all - I will keep at my PCP and maybe see a rheumatologist ( if I can ).

What helped me to explain my symptoms to my family was the book fro Thedysautonomiaproject.org as well as the letter for patients and caretakers on ndrf.org.

@KiminOrlando - all I know is that my RF and ESR were normal, I guess my ANA was as well. I have heard that there is a thing called sero-negative RA, I wonder if it could be that or just POTS? --- It's difficult for people with dysautonomia because we can never be sure if the symptoms we have that seemingly have no proof are caused by POTS or need to be looked into further. Neither do our physicians - apparently! Oh well - I guess we just have to wait until the medical community catches up!!! Until then - this forum is extremely helpful. Thanks!

Hi - I am wondering if anyone here has problems with joint pains. I have noticed that my joint pains ( in all joints, even the one's in my feet ) get much worse when I have a flare - up of my POTS symptoms, such as BP swings, palpitations, syncope, GI issues etc. Even when bedridden I exercise to keep my joints from hurting but when I get bad from POTS they hurt really bad. I was tested for RA several times but do not have that. Does anyone here have problems like that?

I have had POTS since my early 40's and am currently going through menopause. The hot-flashes and nightsweats related to menopause have definitely made my POTS worse. My dysautonomia specialist told me that this is because hot flashes cause a drop in BP which causes autonomic instability. I can't have HRT due to hypertension from POTS but I take a herbal hormone balancer called chaste tree supplement - it has been so helpful with the symptoms of menopause that it also improved the POTS ( only due to the decrease in hot flashes ).

Hi - I totally get your point. I do have POTS and suffer from syncope as well as seizures directly related to POTS. However - these are just ONE of the symptoms of dysautonomia and they are due to the orthostatic intolerance. This symptom is more severe in people with POTS than other dysautonomias. In addition to this I also have IBS, temperature dysregulation, IC, CFS, GERD, chronic pain and ADD - all of these are from dysautonomia. Although the syncope and seizures are the most dramatic and recognizable symptoms does not mean that they are the most disabling, in fact on a day-to-day basis I think that I mind the fatigue the most. So - dysautonomia does not have to include POTS symptoms to be real and I hope you find help from that.

I do not tolerate water because it makes me nauseated. I sip gingerale all day long and it helps me with my stomach as well as the fluid requirements.

POTS caused the same symptoms for me to the degree that the reflux got so bad that the lining in my esophagus became pre-cancerous. The nausea was as bad as you describe it. I took Zofran then Phenergan then Compazine. What ended up helping me was Protonix 40 mg 2x daily. I still take Zofran as needed.

I also have orthostatic hypertension, in my case it is caused by excessive vasoconstriction. I tried Bystolic and Toprol but the one that helped me the most is Coreg.

I just had this discussion with my PCP about the porta cath. I think it would be very good for me because instead of driving 1 hour to the hospital to receive IV fluids I could have them at home. However - he is very much against the cath because of not only the risks of bloodclots and infection of the port but also because in my case he feels I need to be monitored in the hospital when I get bad because I get so unstable that I can't walk at all due to syncope and seizures from the POTS. From what you write about your daughter - it sounds as though she very well might benefit from fluids. I - as well as most POTSies - do so much better everytime I get them. The orthostatic intolerance completely goes away after them for a while. It would be good to ask her doctor about them. I wish you both all the best.

In my case a flare-up is considered any time my POTS symptoms become so bad that I can no longer function without medical intervention - in my case IV fluids, increasing meds or becoming bedridden.

I have been using the Nitropatch for some time but that does not help too much. Plus - most POTSies do not tolerate Nitrates, so I don't know if it will help anyone that does not have this specific type of POTS. I was scared beyond sanity having to put it on the first time - being that I passed out using Nitrate during a TTT. But it did not affect me badly and I have been using it for about 6 months.

I have found that frequent small high protein snacks help me a lot. I have POTS related stomach issues, so I don't do well with raw fruits or veggies but do well with steamed stuff. With brain fog - well, that can be tricky. I take Ritalin in the am and I do light exercises to keep me from getting too fatigued and to keep me alert. But when I get bad and have issues with syncope or pre-syncope ( I have convulsions as well ) nothing really helps - I just have to hang in there, rest, get IV fluids and then start to slowly recondition. I hope you can use this - in your work day as well as at home. Take care of yourself!!

For anyone diagnosed with hyperadrenergic POTS and frequent chest pain: I recently had a cardiac cath done due to my frequent episodes of severe chest pain. I was diagnosed with Prinz Metal angina, that means the chest pain is caused by spasms of the coronary arteries. I also have Raynauds syndrome, which are spasms of the peripheral blood vessels causing my toes to turn blue and ice cold. I wanted to share this information because it might also be something happening to some of you. I find it curious that some of us have problems with blood vessels dilating too much and others with them constricting too much - yet we all share similar symptoms!

@Mikey - I take Carvelidol ( Beta-blocker ) as well as Diltiazem along with the Ritalin, plus several other meds. For me the Ritalin never affected my Tachycardia and did not make me dizzy or lightheaded. Some people do not tolerate beta's but for me they are necessary. Although I had problems with some other ones.

Hi - I have been taking Ritalin for POTS related fatigue with good results. Lately - due to a triggered event - I had to start from scratch with reconditioning and the fatigue is much worse. My Doc recommended switching to Modafinil but it is not covered by my insurance. Has anybody experienced a big different between the two? Does anyone take Modafinil? --- I appreciate any Input - Thanks

Hi - I can relate, because I too was very scared to try new meds. But we don't know what helps - or does not - until we try. In the end I always try what my Doctor suggests and have found that even if it does not work out - at least we know. It's like a puzzle: if we do not try to fit the pieces together we will never know which ones fit and which ones do not. I suggest you try what your doctor prescribes. Be brave and know that there are many meds that help - but we have to try them to know!!!

I just got out of the hospital for a serious hyperPOTS flare with all the usual fixings. Now I'm home and dealing with the aftermath, especially the fatigue is bothering me. I know I need to get up and exercise, which I do to the best of my tolerance every day. Unfortunately that is not enough ( or - for someone as impatient as me - is not fast enough ). Does anyone have any tips? I also would like to know what some of you take Klonopin for - does it help for fatigue? Can you take it as needed? What side effects have yoy experienced from it? I thank you in advance for any replies

Hi Steven - I have hyperPOTS with both Hypo- and Hypertension. I experience many of your symptoms. I tried Mestinon, Pyridostigmine, Toprol, Bystolic .... I don't remember them all. What has helped me for a while was Carvelidol ( had to start low then increase to now 25 mg 2/day ), then added Diltiazem ( increased slowly ). That really balanced my BP plus settled the HR and palpitations. I also take SSRI, Ritalin ( for fatigue ), Guanfacine ( also for BP ). But it took YEARS to establish this regimen and what works for me may not work for you. --- Regarding the temperature intolerance - I do not believe that there is much to do about it. I need to stay inside in extreme temps or I faint and feel terrible. We have to learn to listen to our body-signals and just constantly adjust to them. Unfortunately that's sometimes the only way to function. I hope this is helpful to you - I wish I had better suggestions!