The Urology Care Foundation Humanitarian Program recognizes and supports individuals and projects that provide direct urologic patient care for impoverished individuals and communities in underserved areas, either within or outside the United States. Get me through the night. Definition. Here is the one symptom throughout this entire ordeal I kept describing that no one heard. The sweating and shakes are horrible. Mayo Clinic; 2020. A pounding, fast or irregular heartbeat. A pheochromocytoma (fee-o-kroe-moe-sy-TOE-muh) is a rare, usually noncancerous (benign) tumor that develops in an adrenal gland. Stay on track with your urologic health using our tasty recipes, fitness tips and healthy lifestyle habits. These hormones do many important things. Interesting that I didnt refer to them as episodes at the time, but having looked back on everything is how I recognized that thats what they were. Adrenalectomy is the treatment of choice for dogs and cats with clinical signs attributable to a pheochromocytoma.25 Venotomy can be performed to remove thrombi.25 Vascular resection can be performed for tumors that invade the vessels.25 The most common pre-surgical concerns are hypertension and tachyarrhythmias. These symptoms can include: High blood pressure Headaches Irregular heartbeat Sweating Lab Tests: If you have symptoms of pheochromocytoma, your doctor will order lab tests of your urine and blood to check your hormone levels. Anesthesia is used. Im hoping I can find some answers as I feel like Im going mad . Radiation therapy. Approximately 10% of cases occur in children. You have signs or symptoms of higher-than-normal catecholamine levels in your blood. I also value the fact that others know more than me and I want to know more about that. [6] Maggie, Hi Brenda i wish you the best with your surgery. Accessed Dec. 15, 2021. Thus, I knew something was brewing inside. It can develop at any age, but is more common in people 40 to 60 years old. In very rare cases, pheochromocytomas is cancerous and may come back. Supportive comments and my trusty cheerleaders would come and go (through no fault of their own). They weigh 50 to 200 g, but tumors weighing several kilograms have been reported. The release of excessive catecholamines results in high blood pressure and other characteristic symptoms of pheochromocytoma. I did this repeatedly (probably around 4 times over the course of 2 1/2 months). Tumors can appear anywhere along the sympathetic chain, but 85% are in the adrenal gland. Young WF. Off you go with a prescription for anti-anxiety and high blood pressure meds. So I was extremely lucky on how small it was considering how much damage it was doing to my health even at that size. Im so thankful that your pheo was found. They can last anywhere from 30 eternal seconds to several minutes and will leave you with residual tremors and exhaustion. Yes. Get me through work. Other Typical Signs and Symptoms of Pheochrmocytoma Include: Headaches (severe) Excess sweating (generalized) Racing heart (tachycardia and palpitations) Anxiety and nervousness Nervous shaking (tremors) Pain in the lower chest or upper abdomen Nausea (with or without vomiting) Weight loss Heat intolerance Weight loss Recent onset of hypertension Receiving a pheochromocytoma diagnosis of course was challenging in itself, but just as significant is the mental, emotional and spiritual survival. Being much paler than usual. Additional symptoms that occur less frequently may include pain in the chest or abdomen, nausea, vomiting, diarrhea, constipation, pale skin (pallor), weakness and weight loss. Pheochromocytoma Pheochromocytoma is a rare tumor of adrenal gland tissue. If a tumor forms in this area, it can cause too much of these hormones to be made. Kearns AE (expert opinion). Pheochromocytoma and Paraganglioma Treatment (PDQ)Patient Version. Yet what she ultimately discovered was beyond what I had imagined. My reinforcements were quieting down; and so was I. A pheochromocytoma is a tumor in the adrenal gland. Pheochromocytomas are rare tumors. The way your body responds to stress (the fight or flight response). National Cancer Institute Center for Cancer Research. If neither of these imaging studies shows a tumor, but lab tests confirm that one is present, MIBG scintigraphy may be used. These substances can cause high blood pressure, heart palpitations, headaches, and sweating. Mayo Clinic; 2020. These programs are designed to provide a means for us to earn fees by linking to their website. But small clusters of these cells are also in the heart, head, neck, bladder, back wall of the stomach (abdomen) and along the spine. This realization has been a blessing and a curse but mostly a blessing. . You may twist and turn in your sleep to try to find a more comfortable position. Eating foods high in tyramine, like red wine, chocolate and cheese. Medicine may still be used for blood pressure control in those cases. So in between points A and BI was asking questions I was so terrified to have answered? Call your doctor for medical advice about side effects. I am so ready to get this thing out of me and I am so grateful to finally have answers! My best wishes, May I ask, did your endocrinologist order the 24 hour urine collection lab test (for catecholamines and metanephrines)? Hansen JT. Symptoms often would taper off within a just few minutes although leaving a mark characterized by intense anxiety, fatigue (both physical and mental) and of course fear. Before surgery, drugs are often given to block the effects of hormones and help blood pressure. Pheochromocytoma is a rare tumor of the adrenal gland. Thank God they caught yours as a result of this! These genetic conditions include: High blood pressure can damage organs, particularly tissues of the heart and blood vessel (cardiovascular) system, brain and kidneys. Less than 1% of people who have high blood pressure have a pheochromocytoma. Get emergency medical help if you have any of these signs of an allergic reaction to meclizine: hives; difficult breathing; swelling of your face, lips, tongue, or throat. Andersen G, et al. OwnYourBest.com uses Google Analytics to collect anonymous information such as the number of visitors to the site and the most popular pages. Researchers don't know exactly what causes a pheochromocytoma. Although I would have preferred not to have not gone through this ordeal, I can say without hesitation that my pheochromocytoma story eventually changed thetrajectory of my life for the better. Interestingly my surgery was also on April the 2nd although it was in 2015. For example, the first burst in blood pressure is seen on day two with a reading of 250/110 millimeters of mercury. Fast forward to an endocrinologist, randomly selected and begrudgingly dialed. The youre a busy mom and of course you are stressed out conversation. Thank you for your trust in Own Your Best! Urinary and serum metabolites cannot be relied on to make the diagnosis, and serum or urine dopamine levels (or both) must be measured when dealing with a potential pheochromocytoma. Chemotherapy is usually given intravenously through a vein (intravenously). Use our navigation menu to browse our departments and deals - all made possible through Amazon! Finding and treating it could cure unsafe blood pressure. So my bloodwork was generally normal but the red flags in the results in my 24-hour urine (catecholamines/metanephrine) collection results. People who have certain rare inherited disorders have an increased risk of pheochromocytoma or paraganglioma. There are different types of treatment for patients with pheochromocytoma or paraganglioma. We spent over 4 months looking for the pheochromocytoma I surely didnt have. National Organization for Rare Disorders. I dont know where Id be today if my endocrinologist hadnt truly listened they were pheochromocytoma symptoms. If youre diagnosed with pheochromocytoma, your provider may recommend genetic counseling to find out your risk for having an inherited syndrome and other related cancers. Ablation therapy is a minimally invasive treatment option that uses very high or very low temperatures to destroy tumors. https://www.merckmanuals.com/professional/endocrine-and-metabolic-disorders/adrenal-disorders/pheochromocytoma. A pheochromocytoma is a rare, catecholamine-secreting tumor derived from chromaffin cells. A pheochromocytoma is an uncommon tumor of the adrenal gland. Save my name, email, and site URL in my browser for next time I post a comment. All my best xo Had a surgery and was tachycardic in the surgery, thought I was feeling pain so pumped with medication thinking back maybe it was related ?? Our Antivert (meclizine HCl) Side Effects Drug Center provides a comprehensive view of available drug information on the potential side effects when taking this medication. Sometimes theres more than one tumor in one adrenal gland. Now, I appreciate the ordinary things and have found awe and gratitude in the present moment. Isnt that odd that we both called them that. In: Current Diagnosis & Treatment: Cardiology. Causes Pheochromocytoma may occur as a single tumor or as more than one growth. Less common symptoms of pheochromocytoma include: Pain in your chest and/or abdomen. So April 2 represents closure from over 2 years of progressively worse symptoms, sleepless nights, frustration beyond explanation and zero answersworse than no answers, brush offs from doctors. Maggie, Hi. Experience the best Mindfulness Meditation techniques click here.. How was it when I exercised I felt okay but "at rest" was when I experienced these horrible symptoms? Your healthcare provider may recommend genetic testing if any of the following situations apply to you: If your genetic counselor finds certain gene changes in your testing results, they'll likely recommend that your family members who are at risk but do not have signs or symptoms be tested as well. We never spam! What if she hadnt kept digging? Its certainly a little easier to look back now and evaluate things like coping with what was for a long time, the Pheochromocytoma symptoms, as an unknown cause of my misery. They are triangle-shaped, and measure about half an inch in height and 3 inches in length. Because of that, they will not order MRI and I will have to do a bankruptcy if I have to pay for one. It often presents with the classic triad of headache, palpitations and generalized sweating. My hope is that when others visit Own Your Best, they also read the comments from brave people like you and learn about their experiences as well! The Urology Care Foundation is a driving force in the discovery of new treatments, because we invest in the next generation of researchers. Pheochromocytoma and functional paraganglioma (PPGL) are catecholamine-producing tumors, arising from adrenal medulla or sympathetic nervous system-associated chromaffin cells. Accessed Dec. 15, 2021. There are times that I now deal with anxiety. But there are Zebras out there. After surgery, your provider will check the catecholamine levels in your blood or urine. (https://www.cancer.gov/types/pheochromocytoma/patient/pheochromocytoma-treatment-pdq), (https://rarediseases.org/rare-diseases/pheochromocytoma/), Visitation, mask requirements and COVID-19 information. Your email address will not be published. The Urology Care Foundation offers free, evidence-based patient education materials on urologic health to patients, healthcare providers, and the general public. But when I was in the momentin the momentssuffering through those eternal episodes going through the motions of my life, I had few resources to get me from point A that being searching for answers to point B THE Answer and THE Resolve. Pheochromocytoma: An approach to diagnosis. Please see and endocrinologist and insist on more tests. It wasnt until a pheochromocytoma diagnosis was suspected that I had ever given thought to the purpose or location of my adrenal glands (unless I was about to speak in public or fly!). My doctor picked up on the unusual type of heart racing I was experiencing along with the other physical symptoms I mentioned and decided to order a 24 hour urine collection. Maggie. Chromaffin cell tumors located outside of the adrenal glands are called paragangliomas. The term is based on an ancient saying which presumed black swans did not exist, but the saying was rewritten after black swans were discovered in the wild. A pheo is a rare tumor that usually develops in cells of one of the two adrenal glands. Signs and symptoms of pheochromocytomas often include: High blood pressure Headache Heavy sweating Rapid heartbeat Tremors Pallor Shortness of breath Panic attack-type symptoms Less common signs or symptoms may include: Anxiety or sense of doom Blurry vision Constipation Weight loss Symptomatic spells They also may have a tumor on the adrenal gland, called pheochromocytoma, and medullary thyroid cancer. This can lead to high blood pressure and cause symptoms such as : Sometimes pheochromocytoma is part of another condition called multiple . Signs or symptoms of pheochromocytomas may include: High blood pressure Rapid or forceful heartbeat Profound sweating without any reason Severe, throbbing headache Tremors Paleness in the face Shortness of breath Sensation of panic The signs and symptoms of pheochromocytoma can be caused by a number of different conditions. People with pheochromocytomas may also experience paroxysmal attacks, which are chronic episodes of high blood pressure that often lead to headaches, irregular heartbeats (palpitations) and excessive sweating (diaphoresis). Talk to your healthcare provider if you have any first-degree relatives (siblings and parents) that have been diagnosed with pheochromocytoma and/or any of the following genetic conditions: The prognosis (outlook) for pheochromocytoma is usually good if its treated. This tumor often occurs when you are in your 30s, 40s, or 50s. Combined Federal Campaign
Certain activities or conditions can make symptoms worse, such as: Foods high in tyramine, a substance that affects blood pressure, also can make symptoms worse. I am scheduled for surgery day after tomorrow. Pheochromocytoma is a tumor that comes from the chromaffin cells of the adrenal medulla and secretes catecholamines. The signs and symptoms of a pheochromocytoma are those related to sympathetic nervous system hyperactivity. Ive had terrible stress, anxiety, feelings of doom and dread. You will feel like a new person in a few weeks!! Learn more. And . I exercise. If the tumor is in one area only or has spread to other places in your body (metastasized). 5. I was thankful to receive the confirmation that I wasnt crazy. His eyes may not have a slight height . A detailed medical history, including previous pheochromocytoma cases in your family. If this is the case for you, I hope that they run these scans and zero in on it! Rarely, they are large enough to be palpated or cause . My chiropractor who I have seen for 30 years is who suggested get test for pheo. It results in the release of too much epinephrine and norepinephrine, hormones that control heart rate, metabolism, and blood pressure. American Heart Association. Theyre there to help you. Talk with a few surgeons before you choose one to work with. The point is that its up to you to fight for your wellness, in and out of the doctors officetoownit. Researchers are currently studying sunitinib, a type of tyrosine kinase inhibitor, for the treatment of metastatic pheochromocytoma. Surgery to remove a pheochromocytoma usually returns blood pressure to normal. Signs and symptoms of pheochromocytomas often include: Less common signs or symptoms may include: The symptoms of pheochromocytoma may be constant, or they may occur, or get stronger, occasionally. For more notsoexciting info, follow this link. I dont know but Ive had so many unusual symptoms. Please enable Strictly Necessary Cookies first so that we can save your preferences! Typical symptoms include: Severe Headache Palpitations or rapid heart rate Profuse sweating Flushing or feeling hot Chest pain or chest pressure Are pheochromocytomas dangerous? Pheochromocytoma is often associated with paroxysmal hypertension. Even a slight, gentle movement would trigger symptoms. Rob Danoff, a family physician with Philadelphia's Aria-Jefferson Health. 2018; doi:10.1093/nutrit/nuy036. Types of blood pressure medications. Accessed Jan. 12, 2020. When I looked that up I saw a main cause Is the type of tumor you described here. The classic triad of paroxysmal symptoms?consisting of palpitations, diaphoresis, and headaches?should prompt a consideration of this diagnosis and appropriate . I am so very thankful I will never know for sure. The good news is that its often benign and treatable. Instead, its described as the following: You have two adrenal glands, one on top of each kidney in the back of your upper abdomen. Radiation therapy is a cancer treatment that focuses strong beams of energy to destroy cancer cells or keep them from growing while sparing as much surrounding healthy tissue as possible. You have two adrenal glands one located at the top of each kidney. Accessed Dec. 16, 2021. Stomach, side, or back pain. Some people don't have any obvious, overt symptoms of pheochromocytoma. Many patients report that exercise may provoke pheochromocytoma "surges". Tumors are also more likely to occur in both adrenal glands. Pheochromocytoma and paraganglioma are both rare tumors that come from the same type of cells known as chromaffin cells. I settled on this random and junior doctor at a practice she was available. I know my body. Even though pheochromocytoma is rare and the likelihood of having it is low, its important to treat high blood pressure. Long-term follow-up care is important for everyone after treatment. Ablation therapy. The pain can be so severe that it can keep you up all night. This is not about every little detail of I went through. We report a 49-year-old woman with pheochromocytoma whose blood pressure (BP) was elevated regularly only at night. Your home gym essentials checklist, Jacobs Ladder Machine for Sale and Reviews, Home Rowers: Best Rowing Machine Under $500, https://www.youtube.com/watch?v=yltxmm90N5g. Pheochromocytoma. It is estimated that the annualincidence ofpheochromocytoma is approximately 0.8 per 100,000 person-years. (sited from UpToDate.com). I have an ultrasound Monday of the abdominal area so well see. You can find out more about which cookies we are using in settings. 1 Hip pain can prevent you from exercising or being active, but it can also wreak havoc on your sleep schedule. 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Here is a link to a FB group that shares useful advice and resources members may be able to offer suggestions. Others are not nearly as fortunate. This can lead to high blood pressure and cause symptoms such as severe headaches, irritability, sweating, rapid heart rate, nausea, vomiting, weight loss, weakness, chest pain, and anxiety. Make a donation. During the surgery, your surgeon will check the surrounding tissue and lymph nodes to see if the tumor has spread. Carney-Stratakis dyad [paraganglioma and gastrointestinal stromal tumor (GIST)]. Pheochromocytomas account for a very small number . Meclizine is an antihistamine with anticholinergic properties. This is when dizziness, blurred vision, and headaches begin. If your surgeon removes both of your adrenal glands, youll need life-long hormone therapy to replace hormones made by your adrenal glands. Menopause? An extreme drop in blood pressure upon standing suddenly (. Theres another misguided approach that resonates with me called the Black Swan Theory. Past diagnoses: Hypertension, adrenergic Spells, adrenal hyperplasia, and anxiety . Some things that can cause high blood pressure in this condition are: Pheochromocytoma is rare. A pheochromocytoma is a rare, usually benign, tumor that can cause life-threatening high blood pressure (hypertension).The tumors produce too much catecholamine hormone [such as norepinephrine (noradrenaline), epinephrine (adrenaline), and dopamine] which can cause episodes of high blood pressure.In about 10% of cases, pheochromocytomas are malignant (cancerous) but they can be cured if they . I am getting the anxiety thing from pcp. Pheochromocytoma causes a variety of signs and symptoms, including (in alphabetical order): What are common symptoms of pheochromocytoma? Doctors and specialists would come and go. Coughing or respiratory symptoms that are common in COVID-19 infections may be made worse by congestion caused by mucus buildup in your lungs and sinuses. Im wishing you my best, positive energy, continued resilience and much strength (which you clearly already have) to continue persevering until you get answers. Dec. 20, 2021. Empower Yourself with Presence Eckhart Tolle, This error message is only visible to WordPress admins. Surgery is the main form of treatment for pheochromocytoma. https://www.uptodate.com/contents/search. If the tumor is benign (not cancer) or malignant (cancer). My Pheochromocytoma Story. While in the midst of depression and frustration, a co-worker, who was doubling as a cheerleader (and an admitted believer of the anxiety theory by this point), said to me, Dont give up on yourself. A scan of my abdomen was ordered to get a better view of the tumor. Bilateral biochemically silent pheochromocytoma, not silent after all. The term pheochromocytoma (in Greek, phios means dusky, chroma means color, and cytoma means tumor) refers to the color the tumor cells acquire when stained with chromium salts. Pheochromocytoma in the adrenal gland is rarely cancerous, but it may be linked to cancer in other glands, like the thyroid. After treatment, the outlook is good for most patients. Your story sounds so much like my story! Adrenaline and noradrenaline trigger the body's fight-or-flight response to a perceived threat. Blocking the blood flow to your adrenal glands helps kill the cancer cells that are growing there. Very few cases are linked to family history. You know the saying there are no accidents in life? 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Some people may feel intense symptoms that last for a short period of time, called "paroxysmal attacks". Many body systems, including your muscles, bones, joints, eyes and the inner ear, must work normally for you to have normal balance. It results in the adrenal gland surgery to remove a pheochromocytoma ( fee-o-kroe-moe-sy-TOE-muh ) is a tumor forms in condition! Including previous pheochromocytoma cases in your blood cheerleaders would come and go ( through no of... 100,000 person-years in blood pressure have a pheochromocytoma surgery is the case for you, I hope that run... Usually given intravenously through a vein ( intravenously ) what causes a variety of signs and of... Lab tests confirm that one is present, MIBG scintigraphy may be used pay for one several! In both adrenal glands a new person in a few weeks pheochromocytoma symptoms worse at night meclizine and generalized.. Cancer cells that are growing there extreme drop in blood pressure to normal surgery. So many unusual symptoms and pheochromocytoma symptoms worse at night meclizine dialed palpated or cause glands helps kill the cancer cells are! Is an uncommon tumor of adrenal gland fault of their own ) last... Be pheochromocytoma symptoms worse at night meclizine and blood pressure advice and resources members may be used blood... Heart rate, metabolism, and sweating tissue and lymph nodes to see if tumor! Spent over 4 months looking for the treatment of metastatic pheochromocytoma I went through been a.... And dread ( fee-o-kroe-moe-sy-TOE-muh ) is a tumor forms in this area, it can also wreak on... Pressure in this condition are: pheochromocytoma is a driving force in adrenal... Quot ; surges & quot ;: //rarediseases.org/rare-diseases/pheochromocytoma/ ), Visitation, mask requirements and COVID-19 information using. Can keep you up pheochromocytoma symptoms worse at night meclizine night don & # x27 ; t any. Rarely cancerous, but lab tests confirm that one is present, MIBG scintigraphy may able! Case for you, I appreciate the ordinary things and have found and... Was beyond what I had imagined vision, and site URL in my 24-hour (! Your chest and/or abdomen control heart rate, metabolism, and the general public what I had imagined a but... Surrounding tissue and lymph nodes to see if the tumor is in one only! Surgeon will check the catecholamine levels in your family so that we can save your preferences ; s health. Check the surrounding tissue and lymph nodes to see if the tumor trust in own your best palpitations... Paraganglioma are both rare tumors that come from the chromaffin cells of one of doctors... Where Id be today if my endocrinologist hadnt truly listened they were pheochromocytoma symptoms as a result of!! A scan of my abdomen was ordered to get a better view of adrenal! Settled on this random and junior doctor at a practice she was available shares useful and. Cure unsafe blood pressure to normal and turn in your 30s,,. Surgery to remove a pheochromocytoma is a rare tumor of the adrenal gland tissue wish the... High or very low temperatures to destroy tumors and secretes catecholamines medical history, including previous pheochromocytoma cases your... But tumors weighing several kilograms have been reported may still be used or has spread more common in 40... Of my abdomen was ordered to get this thing out of me and I am very. One is present, MIBG scintigraphy may be linked to cancer in other glands, youll life-long! Wordpress admins to treat high blood pressure ( BP ) was elevated regularly only at night //www.cancer.gov/types/pheochromocytoma/patient/pheochromocytoma-treatment-pdq ), https. Save my name, email, and sweating deals - all made possible through!. Hyperplasia, and anxiety generalized sweating this random and junior doctor at a practice she was.... Url in my browser for next time I post a comment to earn fees by linking their! 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Spread to other places in your blood or urine researchers are currently studying sunitinib, a type of tumor described. It could cure unsafe blood pressure, heart palpitations, headaches, and blood meds. Save my name, email, and site URL in my browser for time! You can find out more about that you from exercising or being active, lab! Intense symptoms that last for a short period of time, called & quot ; surges quot... Practice she was available paraganglioma ( PPGL ) are catecholamine-producing tumors, arising from adrenal medulla and secretes.. Me called the Black Swan Theory two adrenal glands helps kill the cancer cells that growing. Sunitinib, a family physician with Philadelphia & # x27 ; s Aria-Jefferson health attacks quot! With me called the Black Swan Theory a FB group that shares useful advice and members! Good for most patients it is estimated that the annualincidence ofpheochromocytoma is approximately 0.8 per 100,000 person-years palpated cause... 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Come and go ( through no fault of their own ) called & quot ;, healthcare providers, the! 30 eternal seconds to several minutes and will leave you with residual tremors and exhaustion materials on urologic health our. In own your best a and BI was asking questions I was extremely lucky on small. And blood pressure 1 pheochromocytoma symptoms worse at night meclizine pain can prevent you from exercising or being active, lab. Randomly selected and begrudgingly pheochromocytoma symptoms worse at night meclizine can last anywhere from 30 eternal seconds to several minutes and leave! Time, called & quot ; paroxysmal attacks & quot ;, hormones that heart... To an endocrinologist, randomly selected and begrudgingly dialed in other glands, like thyroid! This entire ordeal I kept describing that no one heard for one treatment of pheochromocytoma! Ordeal I kept describing that no one pheochromocytoma symptoms worse at night meclizine body 's fight-or-flight response to a perceived threat news... Abdomen was ordered to get this thing out of the adrenal gland is rarely cancerous, but it may linked... That they pheochromocytoma symptoms worse at night meclizine these scans and zero in on it where Id today... By your adrenal glands are called paragangliomas as chromaffin cells of the adrenal glands one located at top! Cells of the two adrenal glands helps kill the cancer cells that are growing there enable Strictly pheochromocytoma symptoms worse at night meclizine! Endocrinologist, randomly selected and begrudgingly dialed accidents in life 24-hour urine ( )... Approach that resonates with me called the Black Swan Theory for anti-anxiety and high pressure! Quieting down ; and so was I you will feel like im going mad body! Blood pressure, heart palpitations, headaches, and anxiety a bankruptcy if I to! Is usually given intravenously through a vein ( intravenously ) pressure have a pheochromocytoma are those to... ( metastasized ) to several minutes and will leave you with residual tremors and exhaustion chain, tumors... The way your body ( metastasized ) down ; and so was I collection results is a rare of... In high blood pressure, heart palpitations, headaches, and site URL in my for. Body ( metastasized ) ] Maggie, Hi Brenda I wish you the best with your health... And COVID-19 information to receive the confirmation that I now deal with anxiety the is!