Pistol

@yikespanic - check out thedysautonomiaproject.org, they have a physician list and have 2 doctors from Cleveland clinic listed on it.

Just a thought - I also have Raynaud's, it affects my feet the most. Be careful with compression hose as it can trigger symptoms. I can not use them at all - my feet turn ice cold and then bright red when I take them off ( the hose, I mean ). I tried but had to stop wearing the hose after checking with my doc.

@Christy_D - thank you, I thought it might be a geneticist but wasn't sure. Do they take a blood sample to confirm the diagnosis?

I am not sure if it affects blood work but I just wanted to let you know that one of my many meds is a SSRI and once we increased it b/c of a bad spell of POTS symptoms. The increase actually made me worse, so we had to go back down. One concern: I have good times and bad times and sometimes I feel stable and then it turns on me again. If you DO indeed end up having POTS - please do not test your limits that extremely since it could set off a reaction you do not want. But I very much hope that your tests come back negative and your symptoms are gone.

Hi - I have POTS and my husband has symptoms of joint-hypermobility. My 13 year old daughter has been displaying symptoms of POTS as of late and she also shares all of the hypermobility signs of my husband ( she can bend herself in half and has many abnormal joint issues ). I am hoping to save her from developing full-blown POTS ( I am disabled from it so she is very scared of getting it too ). I would like to have her checked for EDS but do not know what doctor to ask, so here is my question: what type of doctor diagnoses EDS? I would like to go that route before I send her to a cardiologist or autonomic specialist because of her fear of getting POTS. I really would appreciate any Input and thank you in advance.

@Shannoncr - all those symptoms sound exactly like POTS. You wanted to know about syncope - I have both syncope and seizures from POTS and for me I am completely out with both, except for a few times when I remembered what people said while I was passed out. -- I always follow a low - sugar diet and no concentrated sweets because I have hypoglycemia from POTS. Plus I have really bad GI issues from dysautonomia so I have to avoid many foods ( I also have IC so I cannot eat acidic foods ). Your Gi problems may also come from POTS. I have learned that frequent small meals are better tolerated than three regular ones, plus it helps with the blood sugar ( that may be an issue for you too? ) A lot of people develop GERD and IBS with POTS and it may be helpful to cut out some foods ( sugar, dairy, gluten etc. ) to see if you feel less bloated and nauseated. Any frequent Gi problems should be checked out by your doctor though, he may want to do testing. --- I also have to plan any activities beforehand. Since I am mostly housebound I only go out to appointments or - if able - to church, my husband does all the shopping and driving ( bless his soul - he takes our 13 year old daughter clothes shopping, could you imagine?) Before I became disabled I ignored my symptoms and I know the floor in Walmart very well - plus many other stores and public places, caused quite the stir in my prime! Now I have learned to listen to the signals my body gives and only go places where I can sit down when needed and my husband can take me home when I get bad. I used to walk for exercise and many times I got stuck sitting on the ground until someone found me and took me home because I just could no longer walk. --- It does not get to this point for everyone though, there are many treatments that can help - and do for many. But until you find the right treatment for you it might help to follow the signs and adjust your day around your symptoms. -- I hope you feel better soon, maybe you can let your mother read some posts on this forum if she has difficulty understanding what it is like. Best wishes - Susanne

@niftyusername - I agree - this forum is a life-saver of sorts. It is pretty much impossible to explain our symptoms to someone, they thing it must be "something" - heart? nerves? brain? To look healthy - as most of us do - yet not be able to do the simplest things? But here we do not have to explain or justify or defend ourselves, we can just say what's going on or ask questions or seek opinions and everyone gets it. Because - unfortunately - we are all in the same boat. @Shannoncr - I hope all is well with you. Reading over your posts I just want you to know that dysautonomia is a beast that cannot be tamed, it does as it wishes. We can do all we want - and many things do help - but in the end we have to give in to whatever is going on at the time. It is a constant balancing act and for every small achievement there may be dissappointments to come. This is a lesson I had to learn the hard way. But there is a lot we can do and sometimes we do better with exercise and salt and other times we may need rest and meds. I have found that whenever I find a treatment that works I get so excited b/c I think I am cured. And after a while it stops working ( or my body changes or the disease changes, whatever ) and I am all crushed b/c now I have to start over again ( rest, reconditioning etc ). What you need is a good doc - I could not go on without my team of compassionate, understanding and brave docs! --- Be well!

@Bluebonnet08 - as far as I know there is no test for vit C because it is a water soluble vitamin, that means any excess gets eliminated by your body. There are symptoms that you can get from not getting enough vitamin C ( scurvy etc ) but you would have to be severely malnourished. These days we get plenty Vit C from a regular diet. People like to take extra vitamin C because it is an anti-oxidant and helps your body to fight free radicals. However - you can not hurt yourself by taking too much, so it may be something that helps.

@ANCY - do they know where the blood loss is from? I was a nurse before I became disabled and some patients they could never find the source of the bleed! --- I hope and pray that you can keep your port, I know the infusions are important. --- That is a very low hemoglobin, weakness/ tachy/ shortness of breath and even syncope are all normal symptoms for anemia, so hopefully they can replenish and you feel better soon. Just as long as they can fix what is causing the bleed! I will keep you in my prayers - you already go through so much every day and now that!!!

@Bluebonnet08 - sorry - I meant to say I take 125 mg liquid iron, not ferritin. You know - brain fog ......

@Bluebonnet08 - thanks! I hope ( and actually believe ) that you will be better after delivery! Not long now .... I have been taking B12 injections monthly, have been taking Vit D3 for years but last winter tested again very low despite oral supplements. So I took 50,000 units by mouth ( prescription ) weekly for 2 months and now am back on 2000 units D3 daily ( depression and fatigue are greatly improved, so are chest pains, tachycardia and surges ). I also recently started Ferritin liquid 125 mg daily ( since you posted about the low ferritin in POTS - mine was low ) and surprisingly I do not have any problems with it ( no nausea or heart burn or constipation ).

Hi - we all know what it is like when we are bad, down and feeling like life is passing us by because of our symptoms. Then there are the times we have a day or so of energy and we try to do as much as possible and then "poof" - it's back to bed again. After a long, hard, depressive, painful and symptomatic winter I have started many supplements to fight some deficiencies that I was found to have and currently I am feeling really good. So I am doing what I have not been able to do in years: garden! I usually am barely able to do mild housework or cooking but now I can tend my neglected flower beds. So - here is my question: how do you all deal with having energy and household it enough so you don't over-exert yourself? Right now I am living on a "schedule": a bit of house work, rest, a bit of gardening, rest, some exercise, rest etc... this seems to work right now. Normally if I cook a big meal or do a lot of laundry or leave the house to go to the doctor I am down for 2 days recuperating. Now I allow myself the luxury of doing a bit of something that I enjoy ( like gardening ) without feeling guilty that I am using my precious energy for something " non-essential". --- I hope y'all have a good spring!!!!!

Happy for you to have that beautiful Wisteria! I was just thinking how wonderful it is to garden! I have not been able to do that in 3 years ( and it is my hobby!!! ). I have several flower beds and a veggie garden ( hubby does that one ) and this spring ( finally ) I am able to dig in that glorious dirt, weed, plant, compost --- it is a small achievement for most but for me it is a wonderful gift. And for once - instead of being afraid of getting worse again I am enjoying the days I am well enough to spend time doing what I love .... have a wonderful spring!!!

I believe you DEFINITELY need to see an autonomic specialist. In the meantime- these are things that help me - taking supplements, DRINKING FLUIDS, ingesting salt, exercising ( you do not say if that is something you do or even are capable of ), resting when your body requires it ( if possible - I do not know if you work ), but most of all listening to your body! do not fight the symptoms - just lie down when you have to and breathe deeply when your HR races and know that it WILL be over - even if just temporarily. A specialist will be ever so helpful and encouraging to you. Hang in there!

@WinterSown - this is so true! My docs all have seen me on my worst days and they know what a bad day is like because of it. So when I see one of them and I say I am doing good - well, then they celebrate that with me. If I come in the office in a Wheel chair and close to having seizures or syncope - well, then they just get me IV's. By now I have learned that there is no guarantee that my good days continue - I just enjoy them ( like when you baked a cake ). If I have another good day the next day - whoohoo!!! If the next day is a crash-day: oh well, it was nice while it lasted. I am no longer thinking that good days equal a cure - they just are gifts to be cherished!!!!

@MomtoGiuliana - you mentioned about sports drinks and sweating - I do not sweat due to my POTS and I cannot tolerate being outdoors in heat or humidity because of that. But in the summer I do drink Gatorade a lot, along with eating salty snacks. So far that has been working for me to avoid total crisis ( seizures, syncope, extreme fatigue etc ). I believe it has to do with the right electrolyte balance in our blood stream pulls more water from our tissues into our blood vessels, therefore improving blood volume.

@MomtoGiuliana - I always thought my vitamin levels were good because I eat a very good diet . B12 I cannot absorb in my GI tract, so I take the shots and I never felt bad on them. Vit D was low but I believe that is because I cannot be outside long and do not get adequate sun exposure to make it myself. Feel soooo much better since taking 50,000 units weekly for 2 months then 2000 units daily. And liquid iron has been helping me too, although I just started that 2 weeks ago. I feel that many of us do not absorb the needed vitamins despite a rich diet, that is why supplementation is needed. But I have one piece of advice: it is important to take good quality supplements!!! Not all supplements get absorbed the same depending on their composition. I personally prefer IM, sq or sublingual if possible.

You said you doc wants an official protocol for IV saline infusions - I am pretty sure that there is not a protocol in this world about ANY treatment for POTS. I think if your doc is that insecure about treating you it would be best to find another doctor.

I totally felt like this before!!! I went through the -unfortunately common - time when no one knew what was wrong with me and most cardiologists thought this to be a minor issue - despite the fact that I became increasingly disabled by my symptoms. Sometimes I would start a new med or treatment and improve for a while ( or just felt good for a week or so ) and then I felt two things: 1: thank god, maybe it is all over and I can have my life back!! and 2: what if it is all over and then everyone will think I made this all up? What you feel is completely normal and because of the reaction of the medical community/ people in our lives that do not know what we endure is real we have to constantly doubt ourselves. But we here - on this forum - we know what it is like and there is always someone who has the same experience. Please do not feel like you have to be visibly ill - enjoy the times you feel good and do not overdo it in those times. They are precious days and if you believe the people who feel you can function like a "normal person" you will probably get bad again quicker.

Most POTS patients also see a cardiologist - check at the major hospitals for a cardiologist who is familiar with POTS. There might be someone listed on the physician directory on this site? Best of luck - finding a doc that knows what to do is one of the greatest challenges of this condition.

I took bystolic a long time ago and it did not decrease my BP or HR. What did work best for me is Carvelidol since it has both beta- and alpha blocking qualities. I started with the lowest dose and increased slowly to now 25 mg twice a day.

@MomtoGiuliana - I have B12 deficiency since childhood, have been on B12 shots for a long time. For a few years I thought I was OK and stopped the injections but then developed the symptoms ( weakness, fatigue, pains etc ) and have been on them again since. I also am deficient in Vit D and was just diagnosed with low ferritin. The funny thing is that all of these deficiencies share symptoms of POTS - and since I started supplementation I have been a lot better with energy and fatigue. I agree with recipefordisaster tthat vit b 12 deficiency can cause nerve damage and wonder if this might be a potential cause for POTS. With the injections you should feel better soon, it does kick in fast. I wish you good luck!

I had autonomic testing done in a very experienced autonomic research center and it was negative. I went to a second very renowned autonomic specialist who did catecholamines and diagnosed ( and treated me for ) hyperadrenergic POTS. I had 2 tilt tests by 2 different major hospitals in my state and each one showed something different. There is no golden standard with dysautonomia, no test that is the same for everyone. That is exactly why so many docs do not touch ( or even recognize ) dysautonomia. And it is the reason it is still the invisisble illness ( in my case even a major research center was able to detect it ).

I have hyperPOTS and my symptoms are mostly due to excessive vasoconstriction caused by high norepinephrine and sympathetic over-reaction. I cannot tolerate compression stockings because they make vasoconstriction worse ( I also have Raynauds syndrome ). Beta blockers alone do not work for my high BP and HR, the only thing that works for me is Coreg ( alpha- and beta blocking agent ) as well as Diltiazem, which dilates blood vessels. I also am very fluid sensitive and when I go into crisis IV fluids bring everything down.

Hi - to answer your questions: yes, I deal with major cognitive issues. I had neuro-psychological testing done and they found that I have ADD ( common in POTS ) which causes my forgetfulness, brainfog and trouble finding words. Al; that is caused by the chronic hypoperfusion to the brain. -- Gi issues are common for POTS, I had many GI tests and take tons of meds for it. --- I was seen by Vanderbilt years ago at the onset of my symptoms but they were not at all helpful - that does not mean that it will be the same for you. I know they do research - could you get in that way?--- I am on SSDI due to POTS, it took a while but once I had an appointment with a judge and he heard my story he fully supported my disability. --- Please do not give up or despair - many of us have been in your shoes and know how frustrating and scary this all is. Just know that there is always a light at the end of the tunnel and there are many doctors that know what to do - we just have to find them. In the meantime - follow the advice from the members on this forum, we all have survived this far and can share tips that helped us make it through. We are here for you - you are definitely not alone!!!