Lightheaded/Dizzy with PE
So I went to the doctors to get my blood work done and they said my D-Dimer had normalized. But I still feel like something is wrong. I keep getting this annoying slight pain on the left side of my head and sometimes the right. I also feel like I can’t really breathe. I get sharp pains on my left said of my body from time to time. Some days I feel like I’m getting worse than better. I did make another appointment with a nurse practitioner. Has anyone else had normal test but still feel like things are not normal or getting better? I sometimes feel crazy but then I think I am on 3 different medications maybe it could come from that. I take Eliquis, Propranolol, and Buspirone. I was thinking that all of these could cause dizziness and or lightheaded. But again I’m not sure. I just know it’s not a good thing to feel dizzy and lightheaded every day.
2 Comments - Posted Sep 23
My story (saddle embolism) plus an update - need advise
Hi everyone. I just came back from the hospital (after a 5 day stay) on Monday. In my early 30s, perfectly healthy vegetarian and I had a Laparoscopy for endometriosis and BAM one day later excruciating calf pain. I went to two ERs and had negative ultrasounds and was released without even blood tests. I told them I had been on Isibloom birth control for 8 days prior to my surgery so that I would not ovulate (per my doctor’s instructions) - I had never been on birth control before. I went back to the ER and finally because I had shortness of breath they did a CT scan. I had a saddle pulmonary embolism. Thank God I went back. Now I’m on Eliquis and worried every day since that I’ll get another clot. My leg still hurts. How do you manage the pain? I can’t sleep at night due to shortness of breath and just pain in my chest. I also feel like my heart rate drops a lot. UPDATE: Saturday morning: I was on Heparin at the hospital. I met a hematologist the day I was released and he prescribed Eliquis. He prescribed 5 mg a day twice a day. I started to take that dose on Monday at 9 pm and have take it every twelve hours like clockwork. Two days ago I start having shortness of breathe, dizziness and lightheadedness and my heart is jumping all over the place from 79-80 to 120-130. I go to ER they say I have tachychardia, EKG is good and blood is good. I am released and told to go to the cardiologist within a couple of days. I am lucky and schedule cardiologist for the next day (Friday) - I’m still nauseous and there is pain in my right arm and shoulder. Cardiologist does EKG and orders full work up BUT HERE IS WHERE IT GETS CRAZY. He looks at me concerned and says how long have you been feeling like this? I say two days. He says YOU’VE BEEN PUT ON THE WRONG DOSE FOR ELIQUIS FOR YOUR SADDLE EMBOLISM. You should be on 10mg twice a day for 7 days. You are on half that dose. And tells me to go to the ER, his office is closing but he has privileges there. I call hematologist and nurse calls me back saying she can’t get a hold of him on the weekend. My fiancée calls and same thing. The nurse and the practice obviously don’t care. I call on my way to the ER and tell them that if I have another clot and die they will be liable because according to the nurse she doesn’t even know what dose I’m on. I get a voicemail 20 min later where the nurse admits that I’m suppose to be on 10 mg twice a day and someone must have gotten it wrong and to have a pleasant evening. ER does chest X-ray, blood, and an ultrasound of my leg but no cat scan because they are worried I had three scans in the past week when admitted. Last time my clot was missed by two ultrasounds and then it was in my lung. I’m a mess. I am on 10 mg since last night but now I’m starting up a new 7 day at 10 mg twice a day and dropping to 5 mg twice a day after the 7 days. Could I have developed a new clot? Shortness of breath is better but calf still hurts. No idea what to do. I can’t believe doctors nowadays. Anyone had an experience like this? Please let me know. ER and pharmacist (who just called me) agree it’s dangerous I was on wrong dose. I’m concerned about starting the new 7 days after being on for 4 days because I have very heavy periods and I’m about to start mine. No idea if the blood thinner will make it much worse and no idea if I could have developed a clot in the past 4 days. ER won’t CAT scan again. 😞 PLEASE LET ME KNOW IF YOU HAVE ANY INSIGHTS.
3 Comments - Posted Jun 08
Dizziness during PE recovery
Hi, I'm new to this community. My background: I was diagnosed with a DVT + PE about 5 weeks ago (this is the second time I've had it). I woke up during the night with chest pain and went to the hospital, where they did a chest CT and leg ultrasound to diagnose it. They put me on blood thinners and the chest pain went away within 24 hours, and I was feeling back to normal. But about 5 days later, I suddenly felt really dizzy and lightheaded to the point I thought I was going to faint. I went back to the hospital where they admitted me overnight but found nothing. I have since been back to hospital 2 times with random dizzy spells lasting for several hours. I also went to my local doctor, who referred me to a cardiologist, who found nothing major (no strain on my heart). I also had a brain CT to rule out brain bleeding or clot. They also tried switching me from Eliquis to Xarelto but there was no change (and I was on Eliquis for over 2 years without problems, so it seems unlikely to be the cause).Is dizziness a common symptom during recovery from a PE? Has anyone else experience something similar? The dizziness seems to occur randomly and isn't really associated with doing physical activity. Actually if I'm feeling dizzy I feel like going for a walk and getting some fresh air makes me feel a little better. It is making me feel anxious because the doctors don't really have an explanation. My fear is that I may have suffered a second PE a few days after the first.
13 Comments - Posted Nov 20
Recovering From a PE
Hi My name is Jill I am 51 and had a PE On Jan 2 2020. I am very active, I play tennis, love spinning, sweating in general is my love language. So when I got up that day and my upper right side of my back was sore I didn't think too much, I took some Advil and went about my day which was cleaning up the Christmas madness. That night my back woke me from my sleep and I still didn't think to much until dinner time that day. Very suddenly I had crippling back spasms and had a difficult time breathing. Thankful my mom lives with us and she drove me to the ER. I sat in the ER for 6 hours. When the Dr finally saw me she did an X-ray, she could feel my back spasms and thought wow. On her quick return she said we are doing a CT scan there is something on your X-ray and we need a better look. She came back within the hour and said to me," I don't know your faith, your religion or what you believe in but you have a guardian angel looking out for you." It was then I learned of my PE. I stayed in the hospital for 2 nights and left on Eliquis. One week later I retuned to the ER because I had terrible pressure in my chest. The same Dr was on and immediately did another CT even though the chances of clotting again are small. I learned that night I had suffered an infarct from my PE and had a small part of my lung that had closed off similar to a collapse. I am under great care by my primary care, she is a family friend and she tells me often you will get better, it takes time. I am frighten all the time and still have chest tightness, off and on back pain. I have trouble sleeping at night it seems that is when my back is the worst. I have experienced dizziness, arm tingling and just overall I hate how I feel. I switched from Eliquis back to Lovenox i seemed to feel better and I don't mind the shots but I still feel lightheaded often. I guess I am asking if anyone felt legit like crap after their PE? For how long? Chest tightness, back pain, still all the things! Jeesh! Thanks for listening Ohhh they are thinking it was from birth control, yes I was still on it, horrible periods...sorry if your a guy reading..
5 Comments - Posted Feb 23
Alternative treatments for Shortness of Breath?
Hello, this is my first post. Does anyone have any experiences on Alternative or Home Remedies to reduce the Shortness of Breath episodes?At age 52, I was working as an Assistant Track Coach and tore my Achilles Tendon and Gastrocnemius calf muscle while coaching sprinters coming out of the starting block. (I was a former Division 1 Football and Track Athlete that at one time was one of the few who could run a 4.45 40 yard dash, bench press Twice my weight and do 30 pullups and kept in great shape for 30 years since college). I had Achilles tendon surgery, 6.5 weeks in a hard cast. The day I was to get my cast cut off I had a severe shortness of breath, lightheadedness and rapid heart beats after walking 5 feet with the use of crutches while in the Orthopedic Surgeon's parking lot. Stopped and recovered enough for 2 minutes and to get in the wheelchair this time to enter the office. While in the waiting room, it happened again but worse, this time everything went from full color, to grey to black and my vision went from 360 degrees to now narrowing and being able to see the circumference of a quarter, dizziness, rapid extreme sweating and back pain between my shoulder blades., my hearing changed as I heard the sounds of the ocean and my heartbeat and then my hearing almost became complete silence. Then it passed. About 5 minutes later the receptionist then called me to the counter to verify my insurance and I said I can't breath and my heart is racing. She said she saw that and should get it checked with my PCP. After being brought back to the room, I told the nurse (who cut my cast off) and the Orthopedic Surgeon about having trouble breathing and both said to see my PCP. I did not get my vitals taken at my surgeon's appointment. I was only 150 yards away from the hospital. The appointment ended and I was driven home by my driver. At home I check my vitals and BP was 110/60 and pulse 125. When my normal BP is in the 140's over low high 80's to low 90's and pulse being in low 80's. I took it as Anxiety since I waited 6.5 weeks to get the cast cut off. I tried resting but I couldn't lay flat but had to rest in bed at a 45 degree angle. After a couple of hours the pain in my back between my lower shoulder blades was getting worse and decided I probably had a Vertebrae out of place in my back since I was using crutches for weeks. I was driven to the Chiropractor and went I was on the table for like 5 seconds, the Chiropractor said I needed to go the Emergency Room now and not an hour from now or in the morning.At the ER, I had my blood taken, EKG, CT scans and other tests. My d-Dimer test was 2850 and Troponin I was 0.87 and was placed on a Heparin drip. The ER Doctor then talked to me and said I had Pulmonary Embolisms and my left lung was “almost completely occluded”. I asked what that meant, he said almost completed blocked with PE's and was he arranging to have me transported to a Level 1 Trauma Hospital. My ER bed was next to the nurse's station and I could hear on the scanner, Male 52, PE's needing transportation, and hearing LifeFlight air ambulance dispatcher saying it was going to be a 2.5 to 3 hour wait because their helicopter had other emergencies committed to. Talk about Anxiety! ( Months later the Psychiatry Doctors and Counselors talk to you about “it's your anxiety when you later walk ten steps and become Shortness of Breath”. BULL***T). Back to my description of events again, went by Ground Ambulance, 70 minute ride to Level 1 Trauma Hospital ICU unit. Went through the CT scans, EKG and blood work again and now it's around 11:00 pm or so and the Vascular Surgeons come in said "The Vascular Team" has discussed my medical situation among themselves and said they wanted to know or have my consent to agree to an “Experimental Emergency Thrombolytic Surgery with Dual Pulsating Catheters would be inserted in an artery in my neck and directed through my heart and my lungs and tPA (Tissue Plasminogen Activator) was going to be sprayed by the catheters every 4 minutes for 6 hours. Later I learned tPA has a half-life of only 4 minutes. Or I could remain in the ICU for up to a couple of weeks on Heparin and cross my fingers and hope my heart and lungs make a gradual recovery. I had about 6 Wedge-shaped Pulmonary Infarcts (dead tissue areas) at the base of my left lung and a Right Ventricle heart strain. They said think about and they would see me in a couple of hours and I could decide then. About 5:00 am, the Vascular Surgeon team visited me again and I said OK for the Emergency Surgery with tPA and had to sign a number of release forms and it sounded like I was the first candidate for this procedure and they were going to write a research paper on it. The Vascular Docs said tPA is usually only given stroke victims within the first 3 hours but had high hopes it might help me in my situation with PE's. Surgery went well but after the new CT scans, the Vascular Surgeons were evasive and eventually said there wasn't much that changed.It has been nearly 2 years and 8 months now and I am on Eliquis for Life and yesterday I just achieved Day 1000 since my DVT's and Extensive PE's. I am still not back to work. I still become Shortness of Breath when walking 10 steps or more, walking an incline or carrying a full bag of groceries. Last week, I saw my Hematologist and was told I had PTS (Post-Pulmonary Embolytic Syndrome and Post PE-related Dyspnea). I know everybody heals differently and at different speeds but I feel worse now than I did 18 months ago. Seven days ago I got the Moderna Vaccine (shot 1) and after 5 minutes I felt fine and then my right leg about an inch left of my hamstring and a couple of inches above the posterior knee, I got a severe charley-horse pain for 10 minutes and then it was gone. I had a Galloping Whack-a-Mole type of itchyness that felt like poison ivy for 15 seconds then it would be someplace else. It rotated over my front torso and back, scalp around 15 seconds at a time then moved someplace else for 2 days then it was gone. On the 4th day, my good leg (left) was a little stiff but ok. The 5th day, I woke up and my knee cap area and meniscus area was swollen and I could barely walk. The 6th day from vaccination, my good knee was still experiencing more pain and swelling and now there was a Cavitation of cracking sound every 10 seconds when I walk concerning the Synovial fluids. Today is Day 7 since Moderna vaccination and my whole right foot and right achilles tendon area is swollen like a small balloon. I went and saw my PCP today and had x-rays and the PCP secretary just called and said x-rays indicated no injury. Like what I told the PCP, I didn't fall and have only left the house 1 time in last 14 days and it was to get the Moderna vaccine. I have been e-mailing the CDC (vsafe) each day of my symptoms and I've only received the standard text from the CDC and no individualized response. My PCP recommended I contact Moderna about side effects from individuals with DVTs, PE's and people being on Eliquis. Has anyone else on Eliquis gotten the Moderna vaccine and received side effects?I have endured 6 Echos, 8-9 EKG's, 6-7 CT Scans, 3 Doppler Ultrasound of my left, 3 VQ Lung scans, numerous 6 minute walk tests, a Nuclear Stress Test, a right heart catherization iCPET (invasive CardioPulmonary Exercise Test), an emergency experimental thrombolytic surgery with tPA, a EEG (now have mild cerebral atrophy memory issues) and numerous Psych counseling sessions and now on anti-anxiety meds that do nothing when I walk up 10 steps and become Shortness of Breath. I have a Hematologist, Pulmonologist, Cardiologist, Sleep Apnea Doctor, Endocrinologist, Neurologist, Urologist, Psychiatrist and psych counselor. I had Genetic testing done and Negative for all (Factor V Leiden, Factor II, 20210G mutation, 3786843 Auto Diff 5, 3786844 Rheumatoid Factor, 37886845 Protein C and Protein 5 and Phenochromocytoma) I only tested positive for the BARD1 Cancer gene that is 777 Amino Acids long.Does anyone know of any Alternative or Home remedies to reduce the shortness of breath episodes? Over the past 32 months, I've tried about everything I could think of: 12 Acupuncture treatments, 8 Reiki sessions, Himalyan Salt Caves, sleep in bedroom with over 300 lbs of Himalyan Salt, Nattokinase/Serrapeptase enzyme supplements, walnuts with pineapple and bromelain supplements, black strap molasses on pancakes, Lumbrokinase enzyme supplements, King Brand BFST treatment wraps, over 90 EWOT (Exercise With Oxygen Therapy sessions, psych counselor advised pursed lip breathing techniques and diaphramic breathing techniques, listening to 396, 417 & 528 healing frequency hertz WholeTones?Does anyone have any new ideas?
4 Comments - Posted Feb 02