Tessa

Hi Jump For any further information on tests for adrenal disorders, the following links will be very useful. http://www.stopthethyroidmadness.com/aldosterone/ http://hotzehwc.com/attachments/wysiwyg/2/...Cortisol101.pdf Good luck! I hope they find your problem and prescribe the right treatment. Love Tessa

Hi, I am feeling better now, so I have the time and energy needed to answer your helpful posts. flop Thank you for your answer. I thought it could be oral allergy syndrome too. In fact, it has been what the allergist thinks it could be. I went to the office of the allergist on Monday and had the skin tests done. Negative, of course. He then asked for a blood test. I am waiting for the result. Following your suggestion, I am writing down everything clearly for the ophtalmologist and hope that they will understand and accept it. Thank you for your answers, Tachy Phlegming , Alicia, Tearose and BellaMia. When I had these reactions, I went to the allergist to test drugs but besides not checking the drug itself, they tested another one and said they recommended the use of: Mepivacaine as a local anesthetic. Yes I will ask if they really know how to treat me Tearose. Thank you for your suggestion. By the way, I see that I forgot to mention how my reactions were. I had a Novocaine (close to the neck) infiltration at the specialist office. Some minutes later we left and waiting at the information desk to ask for another app. (standing), I started having an acute chest pain, lightheadness and syncope. My husband informed the specialist who took me to the ER. When I finally woke up, I was in bed at the ER. It seems I had been with a IV (no idea what they injected)... For a long time... The reaction to the sublingual nitroglicerine took place during a TTT while standing. Had syncope. The problem is that even though they tilted me back down with my legs up, I did not recover consciousness for too long. They were all very worried (even the Cardiologist). Even my husband could hear their screams from outside... They were thinking to use an IV injection to recover me when I started to recover consciousness. 5 minutes after the sublinglual nitroglerine my blood pressure was 64-26, heart rate 50. (still!) No idea what it was when the syncope took place. They had no readings. I am sure they did not wanted to inform about it because I suspect my heart stopped beating and my bp was even lower... ! I bet that was anaphylactic. I also feel I am hypersensitive to some drugs as for an endoscopy they used sedation (not anesthetic but just to sedate and it seems that I fell asleep for nearly 1 hour without reaction to them trying to get me back...)... I am having the app. with the ophtalmologist on Monday... To start the procedure to arrange the surgery... I am preparing everything I have to tell him... Comments about anything I should add? Thank you, Love, Tessa

Thank you for your kind answers... Sorry for not having posted before but I had a bad episode on Friday night and I am still unwell and very tired. Woke up at 4 am with acute chest pain, that irradiated to the back, as well as sweats and problems to breath due to the extreme pain... I hope to be able to answer your comments as soon as I feel better. Thank you. Love, Tessa

By the way, I forgot to mention that my GP prescribed a kind of epi-pen to use if I have a severe reaction to food (as I am showing signs of an anaphylactic reaction to some fruits)... I have never used it but do you mean I could have a reaction to it if I use it? Ooppps.

Wareagle, thank you for your answer. I am really thankfull for your help. But I am still not sure if it is a problem with Epi, as Nitroglicerine has no EPI, does it? I think it could be a problem of low blood volume and no vasoconstrictor response...(just the opposite) I wish I knew what to do... I really need the surgery but I am so afraid of it... My reaction to Novocaine and Nitroglicerine was so scary! Even the specialists scared to death when it happened... Can Eye anesthetic drugs cause side effects? Hypotension, tachicardia, etc.? Regards, Tessa

Hi, please, can someone help me? I am confused and worried. I was told by my eye specialist that I have two ptergiums in each eye (A Pterygium is a raised, cream colored growth usually on the nasal side of the white of the eye. They sometimes get yellowish or reddish. Before the growth extends onto the cornea it's called a Pingueculae. When it extends onto the cornea it's called a Pterygium) More info: Surgery On my last visit to the specialist, I have been told that I should undergo surgery...She told me to think about it and to return when I have decided the surgery... Well, in fact, I am having problems (blurred vision, reddish eyes, extension to the cornea and near the centre of the eye...)and I should not wait for it to get to the iris... Besides having to confirm with the specialist that the surgery will be modern... I mean, not only removing the ptergium but also filling the gap with a trasplant of tissue to avoid the 50% probability of it to grow again sooner and larger if not transplanted...I have a big problem with the local anesthetic. and being on Medrol.... I know that as it is a minor surgery with local anesthetic I should have 100 mg. IV of Hidrocortisone before the surgery, plus a special care of Blood pressure and heart rate during the surgery process... But what about the local anesthetic? I Have POTS (plus what I mention on my signature below) and had a very bad reaction to an infiltration of a local anesthetic some years ago. It was novocaine. I also had a similar reaction to Nitroglicerine... Any suggestions? Comments? I have an appointment on Monday at the specialist for food allergies and wondered if I could ask him about my problems with these drugs and the surgery... But what should I ask or how should I mention all this as on my last visit the doctor refused to admit it was an allergy (even though she mentioned on the report to avoid the drug in the future)... Thank you for your help, I am looking forward to hearing from you, Regards, Tessa

I also have different reactions to certain foods (as well as to drugs, etc.) Allergies - I have an allergy to melon, strawberry, pinneaple, orange and avocado. If I eat them raw my lips, tongue and throat will tingle and itch. Tongue and throat develop hives. Then I have hoarseness and fatigue. I?ve never had a life-threatening allergic reaction (anaphylactic shock) but my doctor prescribed a kind of Epi-pen just in case I get a worse reaction. I am also sensitive to gluten and dairy (I am following a gluten and dairy free diet). Tessa

hi my friends, I would like to ask you about a friend of mine whose daughter (she is 17 years old) has been prescribed Fludrocortisone to treat her neurocardiogenic syncope. The problem is that her mother has read all the possible side effects and is worried because her daugther has a bicameral pacemaker implanted. Any comments? Thank you in advance for your help, Tessa

Hi Thanks for your comments, they have been very interesting. I will ask my Endo next month to see what he has to say about it as we are having different answers depending on the physician we ask to... Take care, Tessa

Hi Thank you all for your answers, but I am still worried about this as I have been surfing the net and found information that confirms the statements made by this doctor (at least, what I have been looking for up to now). Furthermore, most of our physicians, nurses and GP?s in Spain are not getting to an agreement on the vaccine. Some are against, others say you should... And they always say it is our decission... As they are not sure if we could have side effects. According to what I?ve found, it is true that Baxter Laboratory contaminated vaccines with deadly live H5N1 avian flu virus and distributed it to 18 countries last December... It was only providence that the batch was first tested on ferrets in the Czech Republic, before being shipped out for injection into humans. The ferrets all died and the shocking discovery was made. This news was confirmed by the Austrian Ministry of Health. The Austrian health ministry reported the incident to the European Union and is conducting its own audit. The World Health Organization ?is aware of the situation and is consulting with the ministers of health of the countries involved to ensure that all public risks arising from this event have been identified and managed appropriately,? said Gregory Hartl, a spokesman in Geneva. The European Medicines Agency has no immediate comment. The U.S. Centers for Disease Control and Prevention, which distributes seasonal flu viruses to companies for vaccine manufacturing, isn?t investigating or providing consultation. The CDC is staying in touch with the European Centre for Disease Prevention and Control regarding the incident. Initially, Baxter attempted to stonewall questions by invoking ?trade secrets? and refused to reveal how the vaccines were contaminated with H5N1. After increased pressure they then claimed that pure H5N1 batches were sent by accident. And it is Baxter who is working with the World Health Organization on a potential vaccine to curb the deadly swine flu virus... Article published by the NEW ENGLAND JOURNAL OF MEDICINE (NEJM) about the virus: Virus History US President?s Daughters not vaccinated The news that a fourth person has died after taking the "swine flu" jab in Sweden is focussing attention on the failure of the Swedish Medical Products Agency (MPA) to halt the "swine flu" programme even as reports of serious side effects flood in. October 25th: According to a report by Marc Badertscher in the Swiss newspaper, the Tagesanzeiger, the Swiss authorities have decided not to authorise the use of Novartis's swine flu jab "Celtura" on the grounds that there are insufficient studies to show it is safe, especially for women and children. Arkansas DHS vaccinates 36 children with swine flu vaccine against parents objections See full article: link Germany: Fredrich Hoffmann, the head of Germany's national vaccine commission, has told doctors that they should give the untested "swine flu" jab to their patients no matter what their opinion about it might be, but German doctors are refusing to bow down and be bullied. Another interesting article I?ve found:

Dear friends. For all of us with POTS, reactions to drugs, immune system def. and other diseases... I think that the following information is important as it affects us directly... I came across this information with regard to the Flu and thought I had to share this with you. I do not know if you had access to this kind of information, but It is worth reading it. The video is in Spanish, but I have been able to find a summary of the content in English for you. I post the link to the video for those of you who understand Spanish enough: Link to the video Summary of the content in English Click here (it?s a pdf) OMS Revised the Definition of Pandemia click here Teresa Forcades is a Doctor and she explains the origins of the Flu, the vaccines, the politics, the risks, etc. Don?t you feel impressed about all this? I really doubt now that I will ask for the Vaccine... Taking into account all the side effects, allergic reactions, etc. I?ve had with drugs and with such a difficult Immune system I have, I do not want the risk... I am really worried that my family can get the shot. I am going to ask them not to do it. Had you known about this? What do you think about all this? Thank you for your comments. Tessa

Hi Linda Sorry to know that you are still in hospital, but at least you have an answer, and I can tell you that it is not easy to get to the dx. If you already had adrenal issues long ago (without treatment?), I can fully understand you having health issues. Steroids in excess can cause problems, as well as taking less than needed... You will have to get to the right treatment for your needs, but you WILL get to it. You will see. And your health will improve too. Keep the faith and remember... You are not alone. love, Tessa

Hi LindaJoy Sorry about your adrenal crisis, but happy to know that you could recover. I am taking HC and fludrocortisone and used to be on the board that you have been told to visit (but it has been frozen) I agree with your docs that you were coming down too fast. I have been recommended to tapper down 5 mg every 5 days. Do not be afraid of more life-threatening episodes. When your doctors tell you to come down, do it but very slowly. Now, I've been in the hospital for a week, doing adrenal tests, recovering, etc I've been switched from IV salumedrol to oral hydrocortisone. I feel like H$#%. What about the results of the adrenal tests? And what and how did they tested? I went from feeling fine to nearly dying within minutes. How much time does one usually have to get help when this happens? I didn't feel like I had any time once the crisis started. It can happen. Sometimes without a warning. My endo is not giving me a prescription for syringe steroids in case this happens again. I think I should have it. Any thoughts? I agree with you that you should have an emergency kit. Well, I'm gonna get to sleep, so. Thanks for any responses, in advance. I may not be able to get back with all of you for ahwile, so I'll say now, thanks for your replies. Know all you say will be apreciated. Have a good and deserved rest, Lindajoy. You have gone through a difficult episode. Please, keep us updated and pm me if you like. I am not an expert (I have been on treatment for about 1 year and a half) but I am glad to share my own experience with you. Take care, Love, Tessa P.S.: By the way, I forgot to ask you. Why did they put you on steroids initially?

Hi Am I right deducing that they prescribed Nadolol to reduce your heart rate? What about your blood pressure? Was it high or low before the med? And now? Love Tessa

I'm sorry, I couldn't choose one. I feel so disabled when I have them, limited, frustrated, sick... Interesting poll. Love, Tessa

Hi Chrissy I can only answer based on my own experience, as I am not a doctor. Have you tested your electrolytes: Potassium and Sodium? Are your adrenals working properly? This can cause many of the problems you mention on your posts. I also tend to wake up in the middle of the night with acute chest pain and it does not fade away until I take an extra dose of Hidrocortisone... Low and high levels of serum Potassium and/or Sodium can also cause problems... Please, get your adrenal hormones tested properly. testing I would also recommend a ACTH stim test Hope you can find the answers to your health issues. Please, keep us informed. Take care, Love, Tessa

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Yes, I believe and can see it too. My legs become reddish/purple when I am standing for too long. And it has been confirmed by my Endo. 2. Have you ever been diagnosed with EDS or suspect that you may have it? No, and I do not thing that I have it. 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Yes, could be caused by low blood pressure or if I had extra stress or excercised... 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? Do not know. 5. Have you ever been informed by a doctor that you have low blood volume? Yes. (but no specific test) 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? I have been dx with Microscopic Colitis. 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? Cold hands. 8. Did your POTS arrive suddenly? I?ve had syncopes since I was a child but POTS has been worsening gradually over the years. 9. Is your skin pale? yes 10. Please the top 6 worst symptoms that you experience with POTS: Lightheadedness/off balance feeling chest/neck pain & tightness shortness of breath Tachycardia & low BP fatigue tachycardia

Hi Hummingbird and of course, all of you who are reading this post I have adrenal insufficiency (not adrenal fatigue) and I do not have Addison disease. You can have adrenal insufficiency but not Addison disease. Aldosterone was nearly undetectable and cortisol was below normal range (first time in the morning). Furthermore, my ACTH stimulation test was failed - therefore confirming hypopituitarism... I Have POTS, tachycardia and low BP on standing. Although adrenal insufficiency is not very well known here and specialists do not have enough experience on dx and treating it, following my own suggestion, my Endo prescribed Florinef + hydrocortisone. Friends of the Adrenal Help Group forum (see my previous post) recommended taking some supplements (following my my blood lab results). I forwarded it to my GP and he agreed. These should be taking depending on your values (you will have to check with a blood test). I am on supplements of potassium, iron, magnesium, vitamin B complex, folic acid and calcium. As well as taking Sea Salt with water (1/2 teaspoon) in the morning and in the afternoon. Regarding my symptoms... a very wide range of them (remember that I might also have other hormones affected): POTS, dizziness, weight loss, nausea, fatigue, low blood pressure, weakness, chest pain, syncope, irregular and painful periods, decreased libido, thirst and increased nead to urinate, motion sickness, abdominal pain, salt craving, sweet craving, fasting hypoglucemia, low blood sugar, exercise intolerance, constipation/diarrhea, allergies, sensitivity to gluten, hypersensitivy to some drugs, hypovolemia, skin changes, hirsutism, easy deshidration, cannot cope with the cold and the heat, etc. Hope that this helps, Love Tessa

You are all welcome and I am glad to have been of any help. Adrenal insufficiency and hypopituitarism for sure is the real cause of my POTS and although it is not easy to get to the right treatment (i have to adjust the dosis depending on my daily activities), POTS is MUCH better now than it was before. At least, now I can stand up, keep standing for a long while, walk, go out shopping, etc. Have not fainted and my near syncope symptoms are not often anymore. My heart rate is still very high (even more when standing). Still cannot exercise, dance, travel too far, etc.... But that?s probably because my treatment is not enough for my needs... But I have the faith that I will feel better... Hope you can get the clue, the treatment and the help needed. Love, Tessa

Hi, Hummingbird I would say that symptoms of POTS can be similar to many other diseases, including adrenal fatigue and/or adrenal insufficiency. The thing is that POTS can be caused by an adrenal disease, and when this is confirmed, than you have the clue to start looking for a treatment. My story is a very long story... (as many of us)... Then I was told I had POTS. After this, it was confirmed that I have Adrenal Insufficiency (Hypoaldosteronism, possible Hypopit). Furthermore, I have a Casein & gluten insensitivity, Anaphylactic reaction to local aenesthetic and nitroglicerine, melon & pineapple allergy... Now I am on HC, Florinef and supplements: Potassium, Calcium, vitamin complex + extra salt My general health is better than before, though not perfect. What I recommend is BEFORE starting on a replacement therapy, to carry out all the tests in order to determine the kind of adrenal insuffuciency that you have. Please, take a look to the following pages (worth reading): Adrenal FAQ Interprete Labs Aldosterone, Florinef and salt Adrenals: testing and treatment And if you have been confirmed to have an adrenal insufficiency or fatigue, I would like to recommend you the following forum, too: Hormone Support Group Hope this helps. Love, Tessa

I started with POTS too, thinking that I finally had reached the core of my health issues but... Dinet mentioned about adrenals and I did my research... Although more than 50 steroids are produced within the adrenal cortex, cortisol and aldosterone are by far the most abundant and physiologically active. My aldosterone was nearly non detectable and cortisol low, too. I have Adrenal insufficiency, hypopituitarism. 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

Hi Julie & Casper Seems that dancing has been (and is) something we all love. Not all of us can dance as we did before, but it is true, we still have our dreams to imagine... And hope... Waiting for better days to come. Thank you for taking part in the Poll. Take care, Love, Tessa

According to a medical article I?ve read: Furthermore, Doctor Grubb also describes another type of POTS in which the heart rate increase and fall in blood pressure happens slowly, while standing for more than 30 minutes... When I had my TTT done, after 15 minutes standing, my heart rate had increased from 80 bpm to 120 (an increase of 40 bpm). My blood pressure had dropped from 120-60 to 107-54 Even though this is enough for me to dx POTS, the Cardiologist (who had no idea about POTS) said he was not patient enough to wait for the 45 minutes of the test and (besides the already clarifying results) after only 15 minutes standing, decided to use the sublingual Nitroglicerine Spray. At that time we had no idea that I was having an adrenal insufficiency and therefore dangerously sensitive to vasodilators.. After only 3 minutes, I had a syncope. According to the doctor I had developed a bradycardia... No further information. When I had the syncope, the nurses tilted me down again with my legs above, but I did not regain consciousness... Time passed and nurses (and the Cardiologist) became worried and anxious, screaming my name and unsure of what to do... My husband could hear their voices from the other side of the door and worried enough to think about entering the room... For sure, the Cardiologist had to inyect a drug to help me cope with the reaction provoked by the NGN... Thanks God, I did recover. I would bet that not only I had a bradycardia (which was confirmed after 5 minutes), but that my heart stopped beating when I had the syncope... But for 2 minutes, while I was without consciousness, the Cardiologist did not write my hr and bp. 5 minutes later, he wrote hr 50 and bp 64/26 But what was my hr and bp when I had the syncope? Who knows? I think they all scared to death. In fact, it could have been much worse... Now I know that it was a circulatory shock (endocrine shock). A serious, life-threatening medical condition where insufficient blood flow reaches the body tissues and the muscle of the heart. A similar reaction happens with Anaphylaxis... And Nowadays, I am fully aware that I have to avoid all kind of vasodilator drugs, unless used together with IV HC... But that was pretty close. And Tearose... I agree with you. We are the only ones who really care about our health and who should be extremely careful with drugs... I strongly recommend everyone always to check & investigate before using a prescribed drug ... Possible side effects, etc. By the way, adrenal disorders (such as Addison disease, Adrenal insufficiency, hypopituitarismo, etc), can produce symptoms that mimic POTS, contributing to one's orthostatic intolerance.... Hope that this helps others. Love Tessa

That?s really hot. I hope that you can manage. Even though, drink plenty of fluids. Take care, Tessa

AMy! Welcome home! I am happy to know that you are back and much better now. i am sure that you will manage with the wheelchair and it will help you feel better when getting around more. Take your time to adapt. Again, glad to see you back! Love, Tessa