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    Community Voices


    On June 22nd I had spinal surgery. I had 2 forms of stenosis, a annular tear, and epidural lipomatosis, so they did a spinal fusion, debulking of the fat, decompression, and put in screws and a plate. It sucked but the surgery was smooth, no issues. Except that recovery is really a pain in the butt. I've been having more pain than they told me I'd have, the Percocet isn't doing much to help, and the home nurse and PT have been less than helpful.

    Last week PT came to the house to help me do my exercises. The first thing he did was take my vitals and everything looked ok. Then we decided I was gonna walk in my hallway for about 5 minutes. I did 2 laps, up many stairs in the process. When we got back to my unit I was very out of breath so he decided he wanted to check my vitals again just to be sure I was ok. My BP was 170/99!

    He said that I couldn't do the exercises because it was dangerously high and that made me a high risk for a stroke. So he left. Well, even when the nurse shows up and checks my vitals, after I've been resting, my BP has been around 150/90 for the last month. This Tuesday my BP was 146/90. The nurse informed me that I've got stage 2 hypertension and need to see my doctor for BP meds. So I scheduled to see my doctor on the 9th.

    I'm so exhausted all the time and feel so sick. My stomach is always a wreck and I get horrible migraines all the time and meds don't seem to do much good.

    I'm hoping on the 9th that we can make heads and tails of this problem and get me on the right meds to help me.

    Community Voices


    So things keep dog piling on top of me and I can't catch a break. In June I had major spinal surgery. It was a success thank goodness but shortly before the surgery both of my wrists started to hurt pretty bad. When my right wrist bends back it kinda gets stuck and I have to gently bend it back. My doctor wrote an order for a CT scan of both wrists. That was over a month ago. Then we found out we need to do a PA for the procedure. My doctor's office claims they did it. But the facility that's doing the procedure says they never got it. So I called my doctor and told them. Then they said they would do it in a week. Still waiting. So this week I called my doctor again and I was told they knew nothing about it. But the facility claims they faxed my doctor many times about it. I'm so frustrated with the incompetency. Meanwhile my wrists keep getting worse.
    2 weeks ago I had a biopsy of a growth on my abdomen. They froze off 15 other growths. The biopsy came back positive for HPV. Unfortunately the dermatologist told me that the strain wasn't tested for so they don't know what it is. The only course of treatment is to freeze off the growths as they pop up.
    I found out a few weeks ago that I am being forced to move out of my apartment this year due to a bad infestation of bed bugs in the building. I'm in a housing program that pays my rent partially due to mental health disorders that I have and they've been trying to get the landlords to exterminate the problem but they've been having difficulty doing it for a few years now so they've decided to cut ties with them. I'm having trouble finding a place to move to and I keep getting denied by every place I apply to. It's very stressful and my anxiety is through the roof.
    I've had been in PT after my surgery for the last month and yesterday they discharged me from PT due to health concerns. Turns out I've got stage 2 hypertension and my blood pressure has been too high for me to do the exercises. They're afraid of pushing me because I'm a high risk for strokes. I'll be seeing my doctor on Tuesday next week to address the hypertension and they'll probably end up putting me on medication for it.
    Shortly before the surgery in June I had blood work done to check my A1C and it was 8.2. now I have type 2 diabetes in my doctor is failing to get me on meds for it. I've been waiting for 2 months for that. I'm really frustrated and angry with my doctor's office for dropping the ball on my care. I deserve better care than this.

    5 people are talking about this
    Community Voices

    It took a while!

    <p>It took a while!</p>
    Community Voices

    High Blood Pressure, Medication Changes #BloodPressure #Medication

    I’m wondering how long do you give a new bp med before you call the doctor because you realize it may be causing increased physical pain and symptoms?

    I’ve only had a high blood pressure for a couple of years, extremely high. 180-200/104. Before that, I consistently had a bp of about 112/75-80, my whole adult life. Until the pain got unbearable again and mobility was affected so much, still is.

    I’ve been on bp meds for about a year now. I take 2 different meds. It took months and months for me to get through to my doctor and make him hear me. Something has not been right in my body and I kept telling him, he’d blow it off.

    My neurologist (a hundred miles away) continues to do bloodwork and every single time my potassium is too low, my sodium way to low, etc. The e.r. (heart attack scare), had to pump me full of saline and every blood test is showing the too lows, too highs, etc. She kept telling me to call my doc and tell him bp meds need adjusted, he’d blow it off.

    Last week-
    Finally, after a heated online message to him, he heard me. I was given an immediate next morning appointment (wow!, first time ever). He changed 1 of the 2 meds. I feel like it too, is making more pain in my legs, more full pressure feeling and more tingling. How long do I need to give this new med a try?

    2 people are talking about this
    Community Voices

    My journey of 3 years and still no end

    A post on the pain of #Scoliosis reminded me of my 3 year journey of non-#Diagnosis where it seems scolosis has played a part.
    Now I am quite #Disabled with many different items, but I'm just focusing in on May 2019 and its aftermath.
    An aftermath that is not yet completed.
    In May 2019, amidst the height of covid, I was taken to A&E with what turned out to be a #pulmonary #embolism , causing my right heart ventricle to be swollen and my lungs damaged.
    On blood thinners I joined the pulmonary #Hypertension and the lung clinics. Investigations of various complexity and risk ensued and the thinner is now for life as they could find no reason why I throw blood clots.
    Lung function tests showed I had little breath and wheezed and panted and coughed.
    But no reason could be found.
    After 2 years my heart and lungs seem to have stabilised. No further inflammation or increase in damage. But still I have no breath.
    At this point a consultant mentioned how low my #Oxygen levels were when I was flat in a scan and suggested I go to a sleep clinic to see if I have sleep #apnea .
    I was duly sent for test 1. When considering the results, the doctor mentioned that my scoliosis was no doubt impacting my ability to breath.
    I thought how interesting, especially as it seemed to be on the move, judging how tight and painful my muscles were and how my shoulder dipped even further.
    Just fyi, adult scoliosis has no treatment. No steel corset. No operation. Just bear with it. And see an osteopath or sports masseur.
    But still, my oxygen levels overnight are too low.
    And now I am back at the lung clinic. To see if I have asthma. I am given increasing levels of a drug for over an hour to stress my airways and bring on asthma. Mine it seems is very mild. This is not the answer.
    I have #Hypoxia but how is it caused?
    No answer is yet forthcoming. 3 years on and still more clinics and yet more tests.
    I admit to being frustrated and #depressed as my GP rightly says,by my health or lack of it. I wake up in the night again and again. My muscles cramp. I can't get comfortable. And get up in the morning slowly with no energy for the day. And no oxygen in my blood it seems!

    Community Voices

    Anxiety - Body and Soul

    Part 1 of 3 Hello Beautiful Ones,

    I love you.

    It’s been a while between blogs!

    Life is busy and moving incredibly fast.I’m even turning 25 next year. No I’m not…My kids are a mix of near adults and pre-teens and the hairs on both the adult heads are getting more grey as each day passes.

    Also, we take collagen now. Like real old people do.  I asked my 90 year old Nana today, how old she felt – “ Not a day over 21 love.”

    Time is a vapour. A simultaneous thief and gift.

    So I’m gonna head right in to this convo: #Anxiety .
    #Depression .

    I wish I knew their names 20 years ago. It was weird growing up in the 90’s with quite a common heredity predisposition to #Anxiety , yet having no clue whatsoever as to what was going on in my body. Since a diagnosis later in my life, I have spent the best part of the last 15 years wrestling with God about my own journey through #GeneralizedAnxietyDisorder ( Generalised  #Anxiety Disorder). In the very beginning I screamed to Him, punched walls in frustration, removed myself from social settings, blamed God, blamed myself. It wasn’t until I got some real revelations about God and some real education about my condition that healing truly begun. Here is a little bit of my story so far.

    The Back Story :

    Since I can remember, #Anxiety has been a part of my life, of me. I wasn’t just scared of the dark, I lived in constant fear of death of a loved one, of being alone, I had #PanicAttacks all through primary school which worsened in high school. I grew up assuming this all-consuming sensation that took over my body and left me exhausted and petrified, was normal. It didn’t have a name until I was 23 and gave birth to my first child Samuel. Sammy had some complications during birth and his heart rate dropped rapidly putting his life at risk. At a time that my Mum expected me to completely freak out and lose my mind with panic- I actually went numb. My body decided it was too much and shut down to protect the amount of #Anxiety my body had produced. Post-Natal #Anxiety Activated. Looking back- knowing my condition then would have changed everything.What followed was 3 months of the closest thing to hell I have ever experienced. I couldn’t eat for 3 months, I was given nutrient shakes (vom) made by my family to keep me going. I couldn’t sleep for 3 months. I know that sounds strange and extreme, but it is what it is. My body and nerves were so over-sensitised that sleeping wasn’t an option. Sleeping tablets did nothing. I found myself in the emergency room at hospital with heart machines monitoring potential heart #Arrhythmia / heart attack. My body shook with constant adrenaline for weeks, essentially, in a constant #PanicAttack for the first month of my child’s life. Thankfully my family loved on him like no other love I have seen.

    As I began to see doctors and receive therapy and education I learned that what I had my entire life wasn’t a spiritual attack, it was a physical condition. Just as is #Diabetes , #Hypertension etc, my brain chemistry came in a certain package from birth and I now had to make adjustments, accept treatment and medication to help me live the best life I can. It was the best thing I have ever done in my life.

    My journey with #Anxiety and God really began here. Years of wrestling where God fits into #MentalHealth and where #MentalHealth fits into me and who I was created to be.
    Here is a few things I’ve learned along the way:

    1) #MentalHealth is a result of chemistry not a flaw in character.

    It is so easy to integrate the 2 but something so significant that I learned is that brain chemistry is as physical as #BoneCancers . If you came home with a broken leg or an open wound- you would be taken to the closest hospital for assessment and treatment. It feels emotional because brain chemistry is the control centre of emotions- that doesn’t mean what you are experiencing is made up or “in your head”- it is literally in your body and sending signals around your core system to feel and experience real symptoms. This is why deep breathing ( 4 seconds in the nose/ 4 seconds out t

    2 people are talking about this
    Janet Coburn

    Can Sleep Apnea Affect Your Mental Health?

    My husband and I both have sleep apnea. We also both have depression, or at least he does, and I have bipolar disorder with a pretty hefty depressive bent. Sleep apnea is a medical condition in which a person stops breathing multiple times a night. The body responds to this by resuming breathing after a second or two, but sleep disruption has already occurred. For my husband, this occurs up to 60 times a night, while it happens to me more like six times. Technically, my version is called “hypopnea” (hypo+pnea – low+breath; apnea, a+pnea – no+breath.) The body depends on breathing, of course, for oxygen, but it also depends on sleep – which is disrupted in sleep apnea – for proper functioning. REM sleep, for example, is vital for dreaming, which has multiple beneficial effects on the body and mind. REM sleep has been known to be altered in depression, and studies have suggested that it is involved in modulating mood symptoms, including psychological distress in general. One of the more observable symptoms of sleep apnea is loud and prolonged snoring, which both my husband and I have experienced. While I was traveling with my mother, she even requested that I let her go to sleep first since my snoring kept her awake. But what does sleep apnea actually do to the brain? Surely lack of oxygen to the brain has some effect. Indeed it does. According to research conducted at UCLA, “gasping during the night that characterizes obstructive sleep apnea can damage the brain in ways that lead to high blood pressure, depression, memory loss, and anxiety.” Sleep apnea has been associated with difficulty concentrating, memory problems, poor decision-making, depression, and stress. A study published in Sleep Health found that untreated sleep apnea increases the chance of anxiety by over three and a half times; depression, by more than three times; severe psychological distress, by not quite three times; and suicidal thoughts, by more than two and a half times. Sleep apnea has also been associated with PTSD. The Journal of Clinical Sleep Medicine recommends that “in individuals with [obstructive sleep apnea] and psychiatric illness, treatment of both disorders should be considered for optimal treatment outcomes.” Studies suggest that sleep apnea is linked with changes in at least two neurotransmitters in the brain (GABA and glutamate) that combine and coordinate signals that help regulate emotions, thinking, and some physical functions. Researchers plan to investigate whether treatments for sleep apnea will help these brain chemical levels return to normal. SSRIs (selective serotonin reuptake inhibitors) such as fluoxetine and sertraline (Prozac and Zoloft) are thought to be valuable in treating sleep apnea. One study indicated that SSRIs may be a good treatment option for [sleep apnea], particularly for those [patients] with epilepsy. Another study showed a link between “having sleep apnea and increased odds of having a mental health issue” or symptoms such as anxiety or thoughts of suicide. Treatments for sleep apnea include dental appliances to be worn while sleeping, lifestyle changes, and even surgeries. These treatments sometimes address snoring directly, but not the underlying mechanism. The more effective treatment is “positive air pressure,” delivered by CPAP machines. CPAPs use positive air pressure to keep the sleeper’s airway from collapsing, which is what impedes their breathing and jolts their brains into resuming it. They consist of a unit that generates air pressure, a hose and mask to deliver it, and assorted straps to keep the hose in place throughout the night. The masks can be ones that cover the entire nose and mouth or cannulas that are simply placed in the nostrils. There are also cushions on the masks or available separately that reduce discomfort as well as waking up with “mask face.” Many people find the masks uncomfortable to wear all night, but others use them not only at night but also for naps. Unlike a ventilator, the CPAP doesn’t breathe for a person. It allows them to breathe more effectively on their own. Diagnosing sleep apnea requires a “sleep study” ordered by a doctor. Assorted leads are attached to the subject, who then spends all night sleeping (or trying to). Breathing rate, heart rate, oxygen saturation, and other parameters are measured and a record is kept of the number of times the subject stops breathing during the night. This is sent to the doctor, who can then prescribe a CPAP unit and mask. Dan and I both use CPAP machines. They are a bit inconvenient, especially when we travel and have to take power cords so we both can use them at the same time (and power converters when we travel abroad). When it comes to packing, the machines are a bit bulky and somewhat heavy. Still, we take them with us religiously. Has sleep apnea treatment improved our mental health? It’s hard to tell, especially since we’re both taking SSRIs anyway. I know correlation isn’t causation, but our depression and bipolar have certainly eased up since we started getting treatment and our sleep cycles have become more regular. But if all it does is stop the snoring, that’s still a win for us. So, if you snore a lot and have a mental health condition, you might want to be tested for sleep apnea and treated if you do. Like chicken soup, it can’t hurt and might help.

    Community Voices

    Recently diagnosed grade 2 Diostolic Dysfunction and scared

    I went to ER recently and after a ton of testing I was told my heart was slightly to mildly enlarged and that the echo showed that my heart struggles to relax. The Emergency department didn’t make it seem like a big deal, in fact they didn’t even tell me the name of the heart issue. I looked at my medical records and saw stage 2 diostolic dysfunction and haven’t stopped panicking since. My X-ray looked good except the slight heart enlargement, it said no sign of heart failure, the troponin was elevated then lowered then elevated again and stayed steady on the 4th one. They didn’t do any cath test or stress test. They only did ekg which was normal, holier monitor for 12hrs which was normal, CT and chest X-ray. I am 34 and over 400lbs. I have been working on weight loss a lot lately and I never knew there was a issue with my heart. I had palpatations off and on for years and had a full cardio work up in 2017 and in 2020 and everything was normal. I have sleep apnea but I use CPAP, I have hypothyroidism but I use Levothyroxine. I know my colesterol was high in the past but it hadn’t been tested since 2020. I have occasional bouts of hypertension but it’s usually at the doctor and normally it’s between 116/80 to 130/80. The BP was really high at the hospital. I’m also pre diabetic and have PCOS. I’m not a big fan of taking meds and would love to be able to treat this holistic. I’m really scared I’ve been given a death sentence. I’ve been eating heart healthy since I left the hospital 4 days ago but I did a drastic dip in calories out of anxiety. #dostolic Dysfunction stage 2

    4 people are talking about this
    Samantha Yonts

    Pregnancy With a Chronic Illness Made Me Even More Pro-Choice

    I already felt trapped in my body due to my disabilities. I’ve felt like a caged bird for years yearning to fly, to feel the wind in my wings and soar to great heights. I had dreams all my life that I could fly. Now the cage is smaller. The cage is close to being so unbelievably small that I’m crushed. My wings will be broken and I’ll never ever be able to fly. I’m a bird that happens to have a uterus. I’m a bird that happens to be pansexual and bigender. Soon they’ll say that’s wrong as well. I have no rights in my prison they call a cage. I’m scared and just want to fly, but where I live that’s not allowed. Where I live I can’t sing my song and I can’t be free. I’m a bird that’s afraid of laying eggs. What if they don’t make it? Am I going to jail because they think I committed a crime? What happens if I’m egg-bound? Are they just going to let me die? I took very good care of my eggs and built my nest right, but they won’t believe me. What happens if I lay successful eggs and there are no worms? They can’t keep them in stock. Maybe if I actually was a bird they’d care more. Animals have more rights than I do as a human. I’d have more rights dead than alive as an organ donor. I have the right to purchase a firearm, but no rights to my body… I almost died giving birth the first time. What if I have complications early on if I try again? How pro-life would it be to leave a child without their mother because I died being pregnant with their sibling? Because saving my life would be considered an abortion. I’m not having any more children unless things change. As much as it hurts, I can’t do that. The world is a scary place to even consider it. I have to think about the kids I have now. My dreams of having one more have been crushed by a flawed system. There is no American dream! It’s an American nightmare! I became more pro-choice after pregnancy and childbirth. No one should have to go through that if they don’t want to or they’re not ready. I almost lost my baby, I almost lost my own life, I lost teeth, I grew a weird growth on the back of my head that always bled, and I lost an organ (gallbladder). I soaked 36 towels in my blood (from placenta abruption due to pregnancy hypertension) during my emergency C-section. Pregnancy and childbirth are hell on the body. No one should be forced to carry the weight of what that brings. No one should be forced to carry a child! We cannot lose the right to safe abortion! We know abortion will still happen regardless and we’ve lost enough lives to unsafe ones. I didn’t give birth so my child can grow up and not have rights to her own body! I will continue to fight for her, for myself, and for those with a uterus everywhere. We cannot be quiet. Silence is violence and we’ve had and seen enough of that! We need to stand up and fight for the rights we deserve. We haven’t come this far to lose! Be loud, be active, be angry! We are at war and we need to keep fighting!

    Community Voices