futurehope

STOP taking your blood pressure from minute to minute. Everybody's BP changes all day long. Your heart will be fine from the changes. You are driving yourself crazy with anxiety. STOP! What do you mean "I can't function like this?" What, exactly, are you saying? Perhaps you are new to POTS and are not aware that you can feel different minute to minute, hour to hour, or day to day. Are you starting to freak out because you cannot understand why you feel weird all the time and you're alone? Are you scaring yourself? Are you looking for a simple explanation to all your symptoms? Are you looking for answers? Before you answer the above 2 questions, just realize that all of us POTsy's are on a perpetual quest to better our quality of life. There are usually no easy answers, though, some people have found underlying causes. Many have not. It's not fun, but if you have a doctor who is willing to work with you, you may gain back some semblance of normalcy. I honestly hope you use some of your anxious energy on researching your condition and finding good doctors. But, please, take care of yourself and stop expecting your "normal" or "pre-POTS" life to resurface. You have some adjusting to do to your "new normal". It is unfamiliar. Stay in touch on this forum. Ask questions. Learn. But calm down. Peace.

Some of the signs of adrenal insufficiency are often similar to those found in persons who are hypoglycemic. These chief complaints listed in order of prominence are: 1. Inability to concentrate 2. Excessive fatigue 3. Nervousness & irritability 4. Mental depression 5. Apprehensions 6. Excessive weakness 7. Lightheadedness 8. Faintness and fainting 9. Insomnia Patients with low adrenal cortex function may have hypoglycemia (or disturbed carbohydrate metabolism) although not all hypoglycemic patients have low adrenal function. A low flat glucose tolerance curve obtained from an oral glucose tolerance test suggests hypoadrenocorticism but can also reflect reactive hypoglycemia, some form of allergy, gouty or rheumatoid arthritis, or schizophrenia. When patients receive support for their adrenal cortex (such as with Adrenal Cortex Extract injections), they often report improvements in arthritis, pain in shoulders and back muscles, allergies, premenstrual problems, headache, migraine, ringing of the ears, tension, depression, suicidal thoughts, nervousness, apprehensions, noticeable heart action (palpitations), gastrointestinal problems, heat exhaustion, and an inability in handling stress. The following physical findings suggest low adrenal function. 1. Skin thin and dry or scaly, pigmentation of temples, red palms or fingertips, and cold clammy palms. 2. Deep Tendon Reflexes are exaggerated. 3. Lymph Gland inflammation of the neck (swelling, pain, or tenderness). 4. Blood Pressure is usually low, and drops upon standing (105/60) and then elevated to (120 or 130/70 or 80) on reclining (postural or orthostatic hypotension). This change from low to higher when lying down may be the reason why many patients find it difficult to fall asleep. It is conducive to falling asleep to lie in a semi-reclining position for 15 or 20 minutes. Another way to describe postural hypotension is that there may be a sudden drop in blood pressure to below normal upon suddenly arising from bed, or from standing still, causing temporary darkening of vision, dizziness, light-headedness, faintness, or fainting. 5. Body Conformation is of the thin muscle-type (this is called asthenic habitus). The typical person is also tall with an angular appearance but a shorter person may have what we call "signs of tallness" - a moderately long neck, an index finger longer than the 4th (ring) finger, and a 2nd toe longer than the big toe. There are long arms and legs, and the arm span is greater than the height. 6. Hair is sparse on the body but there is usually a full head of fine and abundant hair. The typical person is blond and blue eyed, or red headed. A tall, thin blonde with skin allergies can be diagnosed immediately. 7. Dentition shows crowded lower teeth with a high palatal arch (roof of mouth). 8. Pain and tenderness over adrenal area of mid-back when pressure is applied (called Rogoff's sign). 9. Urination is either very frequent in small amounts or infrequent in large amounts. This person usually does not do well in the heat or in the summer, particularly in conditions of high temperature, high humidity, and low barometric pressure. 10. Scanty perspiration (except under arms or hands and feet). This person may be a "salt loser" (the tendency is to lose salt and to retain potassium). The urine and perspiration of the salt loser is saltier than normal and there is consequently a greater salt concentration on the skin. Animals are attracted to the salt on the skin, and often the low adrenal patient will be a favorite of animals to lick. 11. Ankle and/or Finger Swelling. John Tintera, M.D. was an early pioneer in recognizing and treating adrenal insufficiency. He wrote that salt is a diuretic and that hypoadrenocortics (patients with low adrenal cortex function) retain fluid because the body is trying to hold onto the salt. When enough salt is consumed, the body takes what it needs and excretes the rest. If the ankle edema is due to insufficient salt, the edema will usually disappear in three days after taking adequate salt. If it does not disappear in five to six days, potassium may also be needed. Vitamin B6 is also helpful for edema not only because it has a diuretic effect but also supports the adrenal cortex. Source: drkaslow I am on Hydrocortisone & fludrocortisone, as well as taking supplements of Potassium, Calcium, Iron, Magnesium, etc. Love, Tessa Tessa, If you don't mind sharing, what is your dosing schedule for the hydrocortisone, and what improvements do you see? Thanks in advance.

I'm so sorry you're sick and I hope you get better real soon. Tylenol hardly does anything for me either. My temperature stays the same, and the headache that usually accompanies my fever doesn't respond to Tylenol either. I suppose Tylenol works for some. Can you try Ibuprofin?

My endocrinologist did an Insulin Tolerance Test and from the results decided my adrenals do not handle stress as well as they could. My cosyntropin stim test was normal. Do you ever feel "dead", too tired to move, think? Beyond exhausted? Do you "crash"? In any event, whatever you answer, I feel like that sometimes. Exercise or activity can bring it on, also illness. Recovery from illness is prolonged. I've decided, along with my endocrinologist, to be on a very low dose of Cortef. I take 1 5 mg pill with breakfast, 1/4 of a pill at lunch and 1/4 of a pill at 4 PM. In my case, it helps prevent the "I am dead" crashes. And I mean I feel like I'm one step away from "dead" sometimes.

Anti-depressants - not for me Had headaches, gained weight, felt terrible. Klonopin 1/2 of a .5 mg pill - I take nightly. It is the only pill on which I noticed an improvement. After all these months, I'm not sure what it's doing now, but my neuro said to stay on it.

I use Breathe-Rite nasal strips every night with a dab of lotion on the top of my nose to prevent the adhesive on the strip from causing a mark.

I am in no mood to get into a forum fighting match. My neurologist is a very good doctor who happens to be from India. He knows of the medicinal qualities of turmeric and sees no problem with it on food. One of his patients had hallucinations on it, so he did not make it up to scare me. I was not scared. I was sharing what he told me in case it could be useful to someone. If you want to take turmeric, who am I to stop you? Just ignore my post and move on. Touche......

My neuro was comfortable with my increased dose of B-1 and my 3 liver pills/day for naturally occurring B-vitamins and minerals.

I just ran the 500 mg Turmeric pill past my neuro and he said he is uncomfortable with me taking that dose (esp because I see no improvement) and that the only studies he was aware of re Turmeric is in relation to Alzheimer's patients? So, I'm assuming that the positive Turmeric response in some people is anecdotal not scientific. Also, just be aware of hallucinations. That's all for now.

Obviously, the ingredient in Turmeric is something your body needs. All I can say is, I'll keep taking it probably till it's gone, but, the only other time I noticed a difference that quickly is when I began taking a 500mg Ester C. I felt so much better, that I knew I needed it. I'm still on the Vitamin C. Maybe our fatigue and cognitive ability deficits have different origins? We're each so different.

Yayy!! But how sad that we KNEW we got tired from normal everyday activities and no one understood or believed this until this test. It's like, DAHHHH, we TOLD you we were like this. Why couldn't other physicians take us at our word? Well, if it takes scientific verification to PROVE we are not lying, so be it. I'm pleased that the exercise intolerance can be measured ---- except, who has the money to go out there, take the test, and prove that they are telling the truth?! (And, who has the energy to do this?) I hope someone can come up with the "metabolic crutch" we all need so we can function normally.

FYI I'm on my 5th day. I had headachces for the first two days. Am okay now. Do not notice any difference, yet.

For those who have seen a benefit, how long did it take before you noticed increased energy?

FWIW when determining the endocrinologist to see, some of them "specialize" in pituitary disorders. You may find it on the write-up of their practice or on the internet, or ask the receptionist when talking to the office on the phone. You might want to see if there are some forums on pituitary/endocrine disorders and get names there. Best wishes.

Thanks for the reply. I want to hear from others. BTW, on the second day, I had an unusual headache again. Don't know if it was the turmeric. Will try it again today at lunch.

Just wondering? I have GERD and when I mentioned to another friend of mine (who has stomach problems) that I'm going to try Turmeric, he said, "Won't that hurt your stomach?" I guess he thought spices of that sort tend to do that. I did try one pill yesterday. I did not have my usual severe fatigue and weakness which I'm prone to get between 4 PM and bedtime, but.... I had a nasty headache from 2 hours after ingesting the pill (at lunch) until after dinner. I have no idea if the pill is what gave me the headache or not. I hope not. I will try it again today. Is anyone else experimenting with this pill as I am? How are you doing if you are trying it? Thanks in advance.

I tend to get narrow pulse pressure after awakening from an afternoon nap, or after sleeping at night (as well as other times). I feel as if I'm a dead person when I awaken from sleep because of this. I usually push through it and the more awake I am, the better it gets, unless I really DO need to rest. Sometimes, the narrow pulse pressure means I have been overdoing it, and I need "down" time. The only thing that has helped me some (not all the way), is a little amount of Cortef, a steroid. I'm not in love with taking this for many reasons, but it does help me not feel "dead" as often. The down side, is when it wears off, I crash and can feel it. After reading this forum, I might try Turmeric (a spice in capsule form at GNC). Supposedly, it helps with fatigue. And, yes, dehydration adds to narrow pulse pressure, but in my case, drinking more water doesn't really do much once the pulse pressure is already down.

Quitting caffeine and going on beta blockers? That would be difficult for a normal person. It's a double whammy towards fatigue. Did you NEED to stop the caffeine? Do you NEED beta blockers?

FWIW after reviewing my data from a sleep study I had done, my sleep doctor suggested getting out of bed 6 1/2 - 8 hours after I had gone to bed. The idea was to go to bed and wake-up at the same time each day. (ha, ha!?) For one to one and one half months I did exactly as he told me and never took naps. By the end of that period, I was so sleep deprived I was close to being a homicidal nutcase. I don't listen to him anymore, and live my life the way I want and sleep when I need to. Honestly, I do not think my sleep doctor had a clue that POTS presents unique difficulties when it comes to initiating and remaining asleep. Sorry, I do not have any advice for you.

I was tested for allergens via skin pricks. My allergist then made me serum to be used in injections with my allergens in them. After 6 years of an allergy shot every other week, I requested retesting. I have "lost" some of my allergies since having 6 years of shots. It does NOT mean that they won't come back. They may. I remain on shots, with my allergist changing what's in the serum according to info relayed to him on my twice yearly visits. I will remain on antihistamines for my remaining allergies and for other conditions that they help.

Being ill can worsen the POTS symptoms and your "down" time may last longer than normal. Are you worried that each bout of illness may cause POTS to become permanently worse? (Kind of like acquiring pneumonia while suffering with COPD or heart disease?) Is there any reason you think this may happen?

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Sara, Honestly, you sound like me. The internet says something stupid about having this "flat" curve. We lead boring, monotonous lives ?! And possibly have hypothyroidism. We're probably a bit low on the adrenal hormone too, what else? Nothing seems to work right. OMG, I was just like you in my infancy. My Mom said I had to eat frequently. My gastro, last week, suspected that I just have a "fast transit time" and therefore, I get hungry sooner. He suggested eating more fats and proteins. I'm telling you our numbers mean something, esp at the 1 hour mark - we go down??? I'm telling you we're strange. This entire POTS thing is strange, if you ask me. What kind of physician called for your tests, and did he say anything about your numbers? P.S. I never drink soda either and thought when I had to swallow that much sugar at once my body would go into shock.

Well, since I feel like I have excessive hunger, yes. My only possible sugar symptoms (from the rapid change in blood sugar) is drowsiness and extreme weakness and inability to think. That's it. I'm determined to figure out why after 1 hour my blood sugar went from 84 to 78?! At the 2 hour mark I was only at 94, which was 10 higher than baseline. My two hour results are flat and weird, if you ask me, but two of my physicians didn't care, the endo and the gastro. I don't have diabetes, so, case closed. Is there a doctor who specializes in this stuff, who cares enough to figure it out?

Thanks for your answer. At the one hour mark I went down a bit from baseline (which I thought was odd). At the 2 hour mark I went up a bit from baseline but only in the 90's, I think. My symptom was drowsiness. On a normal day I can get very weak and drowsy, like I need to sleep now. It may turn out that I have what they call a "flat curve". On the internet, people with this curve lead a boring and monotonous life and may be hypothyroid. Being as your test made you ill, were you in a setting where you could recline or be taken care of?