futurehope

I'm so sorry you are feeling this way. I understand how difficult it is to do everything including going to a doctor or getting blood drawn. My suggestion is be up front with the people at the lab and at the doctor's office, before hand, if necessary. Tell them your situation and how you would feel a lot more comfortable getting and being there if there was a way they could let you recline. That should go a long way in easing your anxiety about the situation. Before hand maybe you could load up on salt (via taking baking soda in water) and on fluids. That should help. Is there someone who can go with you until you feel more comforatble with your situation? Have you been diagnosed yet? Are you on any meds? I'm sure things will not stay the same forever, and a doctor will give you something to stop some of the lightheadedness. Please, don't lose hope. People have improved once they are being treated.

Eillyre, I couldn't agree more. But I do think there is a process whereby the chronically ill come to realize that the doctor is not a magician with a magic pill, nor is there a tailored "cure" for everyone. This takes time and it can get discouraging. Over time, you come to realize that doctors are humans like us and cannot possibly know all there is to know. On top of that, many are struggling to stay afloat because they do not get paid enough by the insurance companies. Doctors are not working for free. It is a business and it has to pay for their livelihood. And they do need rest and sleep and need to turn patients away sometimes. But if POTS is your first big experience with a chronic ailment, you have some learning to do about the medical profession in general and their ability to minister to you in particular. Eillyre, I took no offense and realize what you said was important for everyone to know. God bless!

I'm not familiar with what testing you've had done, but have you ever had blood volume tested? When my pulse pressure narrowed (and I was feeling really poorly), that's when my doctor suggested florinef to "hold onto" the fluids. My doctor knew by my blood volume test that I was low. Have you tried increasing salt and fluid? Are you particularly fatigued or lacking sleep? Are you recovering from an illness or your period? My pulse pressure/blood pressure changes so I can't describe "usual" for me. Sometimes it's perfect;sometimes it's low;sometimes it's high.

Jan, May God hold you and surround you with His love in your time of sorrow.

Blood volume testing is not routinely done. It is specialized. And, yes, my complete blood count shows as "normal" but I do not have the volume of normal. Two different tests are involved. I found out the info on blood volume testing from this forum. I had my doctor write a prescription for whole volume testing and I went to the Washington Hospital Center. In any case, are you being treated for your anemia?

I pushed to remain part-time for about 1 year after diagnosis. I still couldn't handle a part-time sedentery job with the ability to keep my legs and feet resting on my desk all day (with the boss' permission). I haven't worked for 3 years now and I do not see that changing any time soon.

Your signature says you are anemic. That can cause problems when giving blood. Also, hypovolemia means you have less red blood cells and plasma than is average for your body. I had my blood volume checked at Wahington Hopital Center. Theoretically, I can be hypovolemic but show NORMAL on a CBC which checks for anemia. Why were you having so much blood drawn? How scary to go through your symptoms!

Instead of remaining frightened and worried, can you possibly call the doctor up and ask what he thinks you should do? There's a few things I can think of, but I'm no doctor and I do not want to say something that is harmful or wrong. I hope you get to the bottom of this real soon as it's scary to feel your body losing strength. BTW, I live in Maryland too. Do you have a neurologist that you see?

My sister fits the classification of tall/lean and she has mitral valve regurgitation but no POTS at all (thank goodness). I do NOT have MVP or regurgitation. I'm tall/lean and have POTS. Maybe my body type has a predisposition to POTS. I know I have a predisposition to osteoporosis which has already begun in me.

I don't know if what you said could deplete your Vitamin D that quickly; maybe the doctor would know? Maybe you were low before that and the lack of dairy and sunlight hastened the process? Make sure you ask the doctor what could have caused this situation so it can be avoided. Until you get to speak to your doctor, here's a website you might want to check out: Vitamin D Fact Sheet I'm glad he found this out for you and maybe you'll start feeling a whole lot better real soon. I'm sure you will.

I couldn't resist adding two more cents worth. Ed Bradley (I think that was his name) was a reporter who just passed away. He was well-respected in his profession, loved what he was doing, and died of leukemia. I guess enjoying your life doesn't necessarily keep you from getting sick. Oprah Winfrey, was sexually abused as a child. She doesn't look like she's suffering from any obvious physical ailments. The stress in her case motivated her to achieve great things. An aunt of mine had to walk around Europe with her young son to avoid the concentration camps. She lived to a ripe old age. I guess I'm trying to say that it is more productive to "look ahead" and not "look back". Sorry for my philosophizing. I didn't realize I had such a passion for this subject.

May your recovery be swift and easy!

I don't know the cause of your feeling pulled, but I do know that when I was given a questionnaire prior to my visit to Johns Hopkins "dizzy clinic" (Dept of otolaryngology), one of the questions was "Do you feel pulled to .....? So, obviously, it meant something to them. I hope you can get to the bottom of this;possibly a qualified otolarygologist (eye, ear, nose, throat) doctor would be of help. Let us know what you decide.

Ditto what everyone said. I had visited the Johns Hopkins Division of Otolarygology in Baltimore for my "dizziness" problem. They are the clinic to go to for dizziness. They have the vestibular testing and a I can't remember the names for the other tests. I had been prescribed "vestibular-type" exercises to do by a specialized therapist. It helped somewhat, but looking back, I think I had beginning POTS.

Jodie, I do not deny that stress triggered your ailments. I'm arguing semantics. Stress did not cause the illness, or every stressed out person would be sick. Stress and (the virus, your immune system, your weaknesses) in combination might have created your situation. I do not want people out there who are stressed out to be waiting for a dreaded illness to hit them. Enough said. I'll take a back seat to this thread now.

I'm sure stress can "change our body somehow" and it can't be good. That being said, there a millions of people out there every day who are under extreme stress who do not get this ailment - the president of the United States, for one, Bill Gates, for another, people who hold down two or more jobs because they are broke, people who are homeless, people who have lost a child, etc. So, even though it sounds like stress caused something, I'm a firm believer in the fact that it is stress + your body and its weaknesses + possibly a viral or bacterial trigger. There are too many people with stress to believe it's just stress. They'd all be sick if that were the case. I'm truly sorry you are having to deal with this on top of the difficulties you've had in the past few years. Anyone who is born will be subjected to stresses, and it their response that determines quality of life. I wish you strength and peace.

After reading some of these postings and others after a search, I'm not convinced that the headache (one in particular) I had was a migraine. It was a feeling more like I was poisoned. I know that's an odd way to put it, but how else can I describe feeling really sick? In my case, I had tried this pain pill I had called hydrocodone/apap - I think it's hydrocodone with acetominaphin. I was having a very bad sore throat that kept me from sleeping. Anyhow, I think my feeling ill is possibly a reaction to the hydrocodone portion of the pill because I remember the same kind of response happening after acetominaphin with codeine and after a particular anesthetic after surgery. I felt deathly sick, wanted anything to happen to feel better, my head hurt, my head felt sensitive to touch and I basically wanted something to change. It felt like a living nightmare, like I should be dead or something because I felt poisoned. I felt agitated during this. I remember thinking, "This must be what it feels like to withdraw from heroin or a narcotic. Poor people." You just want to writhe in agony or die. Anyhow, thanks for the responses. I still have a tendency to think that it's some sort of reaction to the "pain killer" part of the med. The "painkiller" in this instance seemed to be targeting my poor overloaded nervous system and "killing" it. Pity me if I ever really will need a pain med for something. I have no clue what they will be able to give me?! I can't seem to take hydrocodone or codeine.

The pulse pressure is the difference between the upper and lower numbers. Most normal people have about 40 points difference. This helps the blood "perfuse" or soak around the brain when the heart is between beats. Your upper number is the pressure during a heartbeat. The lower number is the pressure between heartbeats. You must be feeling pretty poorly as your pulse pressure was low. Your heartrate was up because your body was probably trying to get blood to your brain. I hope you feel better soon. Make sure you're hydrated. Your pulse pressure can decrease if you are low on fluids and have low blood volume. It happens to me. P.S. I noticed you're hypovolemic. This contributes to low pulse pressure.

Cindykron, I stopped fludrocort for one very important reason, and several lesser reasons. Important reason: It was irritating my interstitial cystitis - ouch - for some reason it caused a flare of pain on urination and consequently, pain in my back, and forced me back on my strict IC diet. Other reasons: I did not know how to handle being sick and taking/not taking the med because of inability to eat due to illness. I was afraid that my beginning osteoporosis would get worse. I am getting the same effect of increasing my pulse pressure without taking the med. If I swig 1/4 tsp bicarbonate of soda in 1/2 glass of water AM and PM, my blood pressure/volume seem okay. I'm recovering from a bout of illness that is very atypical for me and I attribute it to the effect of the fludrocort possibly messing with my immune system? I don't know this for sure. If and when I try the fludrocort again, it will be the name brand and not the generic to see if that will determine whether or not I get an IC flare. I hope I didn't bore you. Taking meds is a touchy subject for me. I react poorly to many of them.

Normal for POTsy people. There may be factors at play that have caused you to "backslide". Some things to consider: amount of sleep; additional stress or activity the prior day; new medicine; hormonal changes; ingesting junk food (full of simples sugars, chemicals and dyes); new supplement; big change in the weather; big change in blood sugar, going from being very hungry to eating too much; you are fighting a cold, flu, bug, whatever, and you don't know it yet but your nervous system does; who knows? Do you get the drift? Our nervous systems seems to be more sensitive than average to any change. It's a real pain, I know. One minute you're fine, great. The next, whammo! Sometimes it's difficult to understand WHY? Try not to drive yourself crazy trying to figure out the answer unless it's obvious. Do your best to adjust to whatever comes your way. And, above all, remain flexible, in what you expect of yourself. That's the key. Hang in there. I understand.

Hi, Since getting POTS, I've suffered through a few bouts of migraines, I think. I am not really familiar with these headaches and I thought I'd ask the people who were. When experiencing a migraine: Do you actually feel a soreness or sensitivity in your abdominal area? Does the thought or smell of food want to make you wretch? Do you actually look "green at the gills"? Is your coloring displaying how you feel? Do you sometimes get so uncomfortable waiting for something to happen (vomitting, diarrhea, anything) that you become agitated and start walking, moving, pacing to deal with it? Does the headache seem connected with the bad stomach pain and nausea? These questions may sound really stupid, but, like I said, migraines are relatively new to me and thankfully I don't get them often. I'm asking these questions because I want to differentiate between having a true migraine or experiencing a reaction to or withdrawal from a drug, or, just plain having a stomach flu. Thanks in advance.

I believe some of the documentation on this website says that tricyclics can make POTS worse. We're all so different. I think they can be great for IBS, though. Maybe you could try a small dose?

My experience with supplements is I can't take them. They are too strong for me and irritate my bladder lining (I have interstitial cystitis) and irritate my chronic gastritis (stomach lining). I would be careful because my experience with a "health food" doctor who was treating me for leaky gut and candidiasis in my gut was that I got a lot worse from his pills. I also believe that my stomach lining was permanently ruined after taking his medications. I have not been the same since. Now, that being said, I would feel a lot more comfortable if an endocrinologist had tested you for insulin tolerance (which mine did). It showed that under stress (the test lowers your blood sugar), my adrenals do not put out what they are supposed to. The usual test for Addision's disease (cosyntropin stim test) was normal. In any event, I have documented proof that under stress I might need some hydrocortisone. I totally understand your need for some answers and I am not discouraging you from your quest. Just be careful and think about things. Our bodies tend to be more sensitive to stuff than normal people. I only want the best for you. Take care.

I tried milk-free for a while. I used the rice milk. I don't think I do that well with soy. They do have soy cheeses that are like american and provolone. I would think milk-free is easier than gluten free. I think you've done the difficult part already by going gluten free. My opinion is that milk does tend to make my irritiable bowel more irritable, but I found it increasing difficult to get my 1500 mg of calcium/day without the milk, so I've gone back to eating partially skim string cheese. That'a about it for me. Let us know how your experiment goes.

I can be really miserable sitting. As far as I'm concerned, anything vertical is rough. I recline a lot unless I'm in motion, in which case I can last a bit longer. Feeling miserable for me is not really feeling lightheaded, it's just feeling real sick like there's not enough oxygen going to my brain, if that makes any sense. Like a hypoxia headache, sort of. Once after sitting in my neuro's office, he took my blood pressure and he could see the upper and lower numbers closer together than they should be. (They should be about 40 points different.) This meant my "pulse pressure" was low. Have you taken your blood pressure while you are sitting and feeling poorly? Anyway, I hope you feel better soon. Is this symptom new for you?