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    Community Voices

    My meds….

    <p>My meds….</p>
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    Coping With the Effects of Ehlers-Danlos Syndrome on the Whole Body

    Seeing a bird perched perilously upon a high wire seems reminiscent of living with chronic illness, which is a human health condition or disease that is persistent or otherwise long-lasting in its effects. I’ve thought about what life can be like for the chronic illness community. Some days, chronic illness can seem to take up the entirety of a room, and accomplishing anything outside of the difficulties of the illness may feel impossible. Other days, you may be able to hold chronic illness in your hand, place it in your pocket, and carry on as you try to create enough good memories to get you through to the next inevitable hard day. Ehlers-Danlos syndrome (EDS) is a rarely diagnosed condition that affects every system in the body. It mismanages the production of collagen, the protein “glue” of the body, and it weakens every part that is involved. Skin, joints, ligaments, and hollow organs are directly affected — which leaves the rest of the body with a cascade of struggles. There are 13 different types of EDS, and more are added as they are discovered. Some are more severe in their presentation than others, and they affect each patient differently. This makes it difficult to have a universal treatment plan for all of the symptoms that may occur. Currently, there is no cure for Ehlers-Danlos syndrome, so mediating a body’s response to the collagen defects incrementally is typically the best way to have the highest quality of life. Also, responding to each patient’s individual difficulties in their own way can help them feel validated and respond better to treatments that can truly help. One major hurdle many of us with EDS often have to deal with is not being heard and treated properly by our doctors. Generally, doctors are not trained to deal with conditions that can affect every part of the body. Medicine is usually more of a “reactive” profession — treating what is obvious and emergent — than a proactive trade in which symptoms are treated before they get out of hand. This system can be difficult to navigate as a chronically ill patient with multiple needs. We are sometimes pushed through appointments without having the time to dig to the root of each symptom completely. The areas in which we live, the insurance that we have (or don’t have), and the amount of money we are able to spend on treatments and out-of-pocket costs are big factors in the amount of care we are able to obtain. This process can leave us feeling lost, embittered, and alone when we are not able to stay on top of our chronic illnesses. It can also make us feel ecstatic, hopeful, and accepted when we are simply heard and a doctor is willing to try the treatment plans we have researched so diligently. There are often no easy answers for this, and no amount of being more assertive about what our needs are can necessarily help. It’s a delicate balance in a system that is not built for treating chronic illness. I’ve had multiple doctors placate me to not look for further diagnoses, stating that “One ‘zebra’ found is enough” or “We like to keep everything in one basket,” though doctors don’t often realize that with EDS, all diagnoses are the same “zebra” and in the same basket. The more identifiable traits that can be addressed and the more manageable our entire syndrome can be, the higher the quality of life and the greater longevity we’ll tend to have. Another major hurdle we often deal with is having bodies that have “minds of their own” and will often not cooperate when we want them to be active. Many types of EDS are multi-systemic conditions that have many comorbidities, which are other illnesses or conditions that are caused by Ehlers-Danlos syndrome. EDS is also a progressive illness, which means it can continually get more severe as we age. When we have flares that exacerbate the symptoms in one body system, it can have a ripple effect to other systems and be so overwhelming, painful, and untreatable that we cannot leave our homes. These ripples can last for days, months, or even years without proper treatments, guidelines, and cures. Living with EDS can be a never-ending cycle when there are so many factors that lead to delicate imbalances in such a difficult-to-manage system. We must often consider everything we consume, how we sleep or spend our time, where the bathrooms are at every location, whether we’ve been keeping up with a hygiene routine, how accessible the areas we wish to visit are, and the effects we may have to deal with after a social excursion of any kind. At this time last year, I was barely able to leave my home for appointments — and I couldn’t do much else. My health had gotten to the point of being bigger than I could handle, and I couldn’t stabilize it. For the sake of learning, growing, and teaching, I’ll share some details in this latest physical hurdle. 1. I feel exhausted to the point of often not being able to drive myself. Even walking the dogs in a zombie-like state was a chore I could hardly endure. Running an errand? Never. I do have blood sugar symptoms too, which contribute to exhaustion, but fortunately, there are current studies regarding EDS and diabetes. Many rare diseases are on the verge of breakthroughs of varying degrees all over the nation, but for now, I struggle with being tired. 2. Everything I eat goes through me. I can no longer determine which foods I was sensitive to even though I don’t have many foods I can eat. CT scans revealed stool retention even after a 24 hour cleanse, so I was “backed up.” Everything getting through is called “overflow,” which generally consists of collected water. I was incontinent because of this — sleeping on pads and towels, only leaving the house when necessary, and using pads, crossing my fingers, and hoping for the best. This is a rarely talked-about part of health decline and can keep a person at home all on its own. I knew the next steps could be dire, and I wasn’t looking forward to those possibilities. 3. My thyroid wasn’t always producing as much of its hormone as it should be. This is no surprise since I only have half of my thyroid. Just getting it within “healthy range” was not enough for me — I had to fight to get it down to a lower number based on symptom improvement. This took several months and appeals to the doctor, and it made a positive difference, but did not clear up all of my health struggles. I’m used to not having all health symptoms worked out, but the more symptoms resolved, the better. 4. My muscle fatigue and weakness has increased. This is probably because of all of my exacerbated symptoms. My legs are the weakest, but I do have generalized muscle weakness due to neurological issues resulting from hypermobile Ehlers-Danlos syndrome and tethered cord . The earlier EDS and its comorbidities are diagnosed and treated, the better. 5. I’m always in pain everywhere. I believe the increase in my pain is due to exacerbated symptoms and other conditions, like lipedema and Sjogren’s syndrome, that I’m still trying to get diagnosed. This is yet another reason why diagnoses and treatments are so important. 6. My skin and liver are struggling right now. I’ve always had skin that flares after a shower. Lotion helps, and treating mast cell symptoms does so even more, but splotchy, red, dotty, tiny, itchy patches everywhere? This is new. Also, we found a spot on my liver, and we have to keep an eye on it. I had one “good” organ left! Ha! 7. I visit many doctors. I even finally have a new internist, but they just seem to be a cog in the wheel of never-ending tests, procedures, and difficulties. I have recently received some help in much better ways than I have before, and now, I’m starting to catch up on treating a few of my chronic symptoms. I feel blessed that I still have some life left in me and am not completely relegated to my house at all times, but I still have to be vigilant about “overdoing it.” I sometimes feel like I have a cloud of worry hanging over my head as I wonder when my life-changing symptoms will surprise me next, even as I try to live my life to its fullest and stay grateful for what I have. When you see me smiling, it is genuine. My smile may mask my difficulties, but I’ve truly found happiness in focusing on the positives. Having a silly husband who naturally evokes laughter helps too. Here are some treatments that are currently helping and making a positive change for the better: 1. I get saline IV infusions. Navigating the medical system to receive this much-needed care was difficult, but the effort was worth it. I now access my own port weekly and administer my own fluids. I have dysautonomia (My autonomic nervous system does not regulate properly), I have hypovolemia (I have low amounts of bodily fluids), and I have a lot of neurological damage that keeps my gastrointestinal (GI) system from working correctly. This treatment has brought some of my body back to life. 2. I take supplements. Some of my supplements help me rebalance electrolytes, while others keep my joints and tracts in working order. Potassium, magnesium, salt, vitamin D3, B12, multivitamin, even cranberry and glucosamine chondroitin all play roles in helping all of my systems work as well as they can. 3. I wear braces. It’s best for me to stabilize my joints from the ground up. I have shoe orthotics to keep my arches in place and ankle, knee, and joint braces to keep everything as stable as possible — which helps lower my pain levels and increase my leg stamina. 4. I use adaptive devices. I use a wheeled walker for any distance outside of my home and a power wheelchair for longer distances that I can’t navigate on my own. My legs gradually lose power as they are used. This is common in EDS, but society can be difficult to navigate when your ability level isn’t constant. Most days I don’t notice reactions, other days I can’t help but notice. Hopefully, someday, tolerance and objectivity will rule. 5. I eat to meet my body’s needs. I don’t eat meat or gluten, and I watch my histamine intake too. With so many medical conditions constantly vying for my attention, I try to keep all of my systems as happy and compliant as I can. I cannot tolerate statins, and after my stroke, eliminating meat was the best solution for keeping the right cholesterol levels and a healthy heart rate and blood pressure. I keep my protein levels up with plant proteins. My body doesn’t respond well to gluten, so it’s not an option. Everything in my body works more easily when my GI system is engaged and functioning as best as it can. When the medical community and our physical bodies are determined to hinder our best efforts, I am thankful that the internet can provide some answers and relief. It helps me find other doctors in my area and locate insurance providers through the help of online support groups. The experiences and connections that others with chronic illness share can be so helpful in finding any small measure of positive reinforcement. A friend in one group stated that people with chronic illness often get so used to being in “survival mode” that we may tend to have a different quality of life baseline than most other people have. That sure hit home. We also may “mask” well to try to fit in, but masking our symptoms can be invisible to others and may twist our perceptions of ourselves. If you’ve been surprised by anything I’ve mentioned thus far and wonder why you don’t know these things are happening, keep in mind that “survival mode” is a place in life that may make it difficult to reach out or talk about what we may be going through. Chronic illness survival calls for extra grace, mercy, and leniency in not taking cancellations or long pauses personally. In fact, reaching out can help us have support systems that can help us move forward. It can also feel daunting to breach the chasm that forms while we’re busily trying to keep our bodies going or are figuring out how to navigate our conditions in public. Consider that some of us with chronic illness may feel like a “burden,” which can take a lot of work to overcome. In fact, it took me two weeks to write this article. It is daunting to put myself out there and be vulnerable about such life-altering symptoms, but hopefully, the help it can potentially bring others will be worth it. Trying to receive the basic care needed to enhance wellbeing with chronic illness can feel like a two-step shuffle. The possibilities of something going “wrong” can seem endless, but I urge and encourage anyone struggling with lack of proper care and diagnoses to strive to move forward regardless of the hurdles. While it can feel lonely and daunting along the path of living with chronic illness, you are not alone. Together, just like a herd of zebras, we are a dazzle, and the more we all learn from our conditions independently, the more we can share and look forward to as a group. We can be a flock of birds on a wire, perched perilously but proudly.

    Community Voices

    I'm Alice in Wonderland , until the Queen takes off my head!

    So, you probably think at least life can never get boring when you look out of your window and see Barbie Pink Cows in Bright Blue fields. Or a visit from a summer wasp makes you feel like an actor in a 50's B movie. Can't be that bad right ?

    Well think again.

    Although , there is no way to test it , even my neurologist was unwilling to put the diagnosis in my notes in case his colleagues wouldn't believe him , I seem to be suffering from a rare type of Migraine condition called Alice in Wonderland Syndrome.

    Along with the other wild and not so wonderful migraine varieties in my head's bag of nasty tricks , this syndrome causes me to see strange hallucinations , or makes the people and objects around me change shape and size before it finally finishes the psychedelic field trip with an intense migraine head ache.

    Before , I discovered , ' being Alice', could actually be a thing , I mostly kept what I was seeing to myself.

    I hadn't linked the fact that these visions were followed by head pain , and that it could be the onset of the Migraine that caused them. In fact , I was convinced that I was mad in a way that nobody would understand , and thought the headache only happened because of the way my mind was being overwhelmed by the experience.

    I only discovered the rare set of symptoms in the Migraine family when I had been diagnosed with Chronic Migraine Syndrome and my Neurologist suggested that I look up the different types of Migraine that I was having , so that I could understand what I was going through and why.

    ( I suffer from many Migraines in the Spectrum including Thunderclap , Migraine with Aura , activity onset , orgasm onset, and Stroke like Migraine).

    When , I returned for my follow up appointment , I mentioned the syndrome , he hadn't really heard of it , but looking back on the notes from the previous appointment he noted that I had already finally been brave enough to mention this to him before learning that the condition existed.

    Believe me , when it happens it is still scary , but it is also relief to know that I'm not losing my mind , or that I haven't accidentally fallen down a fictitious Rabbit Hole.

    No , merely just receiving another unwanted gift from the uninvited friend that keeps on giving - Professor Migraine.

    And , on a positive note, it means I know the Pain is about to strike and I can prepare for it.

    At least I am in good company , as , in case your interested , it appears that Lewis Carroll was a famous migraine sufferer whom was plagued by the same thing , hence the name.

    Now , where is that giant green Bunny Rabbit I saw earlier!

    Megan Glosson

    26 Different Types of Headache and Migraine Disorders You Should Know

    People often assume all headaches are the same. However, people who live with headache or migraine disorders know all too well that this isn’t the case. In fact, there are actually over 20 types of headaches and migraines, and knowing which type you have can help you and your doctor determine what type(s) of treatment will be most effective. Some headache and migraine disorders are stand-alone conditions, whereas others are secondary symptoms to another health condition. Also, some are fairly common, whereas others are so rare you may have never heard of them. So, let’s take a look at 26 different types of headaches and migraines, sorted by type. Primary Headache Disorders 1. Tension Headache Tension-type headaches (TTH) are the most commonly occurring type of headache disorder worldwide. These headaches cause feelings of pressure or tightness in a band-type shape around the head, and can also spread into the neck. 2. Cluster Headache Cluster headache (CH) is a headache disorder in which people experience severe headaches around one eye or on one side of the head. In addition to the extreme pain they cause, these headaches can also come alongside symptoms like red or teary eyes, sweating around the face, runny or stuffy nose, and restlessness or agitation. Approximately 1 in 1,000 adults live with cluster headaches. Secondary Headaches 3. Caffeine Headache Caffeine headaches are a type of secondary headache caused by either a caffeine withdrawal or overuse of caffeine. Although these headaches are not typically life-threatening, they can be frustrating and painful for people who experience them. 4. Hormone Headache (Menstrual Migraine) Hormone headaches, or menstrual migraines, are headaches that occur either right before or during a person’s period. The headache can last anywhere from a few hours to a few days and can get worse with certain lights, sounds, smells, or movements (much like a migraine). Because these headaches are typically caused by changes in estrogen levels, sometimes doctors will prescribe certain types of birth control to help people manage severe forms of hormone headaches. 5. Sinus Headache Many people experience sinus headaches when their sinus passages become congested or inflamed. This often causes intense pressure or pain behind and around one’s cheeks, nose, eyes, and forehead. These headaches are often treated with over-the-counter medications, but sometimes are the result of a sinus infection, which requires antibiotics to cure. 6. Hypertension Headache Elevated blood pressure can cause what’s called a hypertension headache. It typically feels like a pulsating type of pain on both sides of the head and can be a warning sign of a more serious medical condition. 7. Exertion Headache An exertion headache, or exercise headache, usually occurs as a result of intense physical activity. These headaches can last a few hours or a few days. They usually have no underlying cause. 8. Rebound Headache Rebound headaches, or medication overuse headaches, frequently occur in people who live with another type of headache disorder. They are usually caused by the overuse of NSAIDs or other types of pain relievers. Common treatment includes temporarily discontinuing certain medications. Migraine Types 9. Migraine With Aura Migraine with aura is a type of migraine disorder in which people experience aura, visual and sensory changes that occur shortly before the migraine headache, or attack, begins. About 25 percent of people who live with migraine experience migraine with aura. 10. Migraine Without Aura Migraine without aura is a migraine disorder in which the two warning phases (prodrome and aura) do not occur. Besides that, migraine without aura includes most of the hallmark symptoms of other types of migraine. 11. Migraine With Brainstem Aura Migraine with brainstem aura is a migraine disorder where the aura symptoms originate from the brainstem. This can cause symptoms like slurred speech, vertigo, tinnitus, and impaired hearing in addition to typical migraine symptoms. 12. Episodic Migraine Most people who experience migraine live with what is called episodic migraine. This simply means they have migraine attacks up to seven times per month on average. People can experience episodic migraine with any of the types of migraine disorders on this list. 13. Chronic Migraine People who experience migraine attacks at least 15 days per month have what is called chronic migraine. The intensity of the attacks can vary, and people with chronic migraine are susceptible to rebound headaches because they often need to take medications more frequently than most other people. 14. Hemiplegic Migraine Hemiplegic migraine is a migraine disorder that causes weakness and tingling or loss of sensation on one side of the body. People who deal with hemiplegic migraine may confuse their symptoms for signs of a stroke, especially when the symptoms occur without the presence of head pain. 15. Acephalgic Migraine Acephalgic, or silent migraine, is a migraine disorder in which people experience all of the common migraine symptoms without head pain. People who live with silent migraine deal with visual disturbances, nausea, fatigue, and more. 16. Ocular (or Retinal) Migraine Retinal migraine is a migraine disorder in which the aura phase causes a temporary loss of vision in one eye. It is most common in women, and can be a sign of other underlying health conditions. In most cases, though, the vision loss reverses itself. 17. Vestibular Migraine Vestibular migraine is a migraine disorder that causes vertigo, or repeated dizziness, in people who experience migraine symptoms. People with this type of migraine may also deal with other common migraine symptoms, such as sensitivity to light, sound, and smell, nausea, and more. People who deal with vestibular migraine may or may not experience headache pain. 18. Status migrainosus Status migrainosus is a term used to explain migraine attacks that may not respond to any traditional treatment and last more than 72 hours. Unfortunately, this condition often lands people in the hospital, and it can be hard to diagnose. 19. Ophthalmoplegic Migraine Ophthalmoplegic migraine is a type of migraine that impacts the eyes. People with this rare type of migraine experience headache pain around their eyeballs. They may also experience eye weakness, double vision, and an inability to move eye muscles during an attack. 20. Abdominal Migraine People who live with abdominal migraine experience extreme pain like any other migraineur. However, the pain is concentrated in the abdomen instead of the head. It’s far more common in children than adults. Rare Types of Headache and Migraine 21. Ice Pick Headaches As the name implies, ice pick headaches are short-lasting, intense headaches that create sharp pain that feels like you are being stabbed with an ice pick. They usually occur in the orbit, temple, and parietal area of your head. 22. Cervicogenic Headache Cervicogenic headaches are ones caused by pain in your neck that feels like it is in the back of your head. These headaches can come as the result of a neck injury or from a lesion on the spine. 23. SUNCT Headache Short-Lasting Unilateral Neuralgiform Headache with Conjunctival Injection and Tearing (SUNCT) is a rare headache disorder that only occurs in approximately 6 out of every 100,000 individuals. SUNCT headaches typically occur as bursts of piercing, throbbing, or burning pain and typically happen around the eye or temple on one side of the person’s head. Each episode can last for up to four minutes, and people usually experience multiple attacks per hour. 24. Hemicrania Continua Hemicrania continua is a rare type of primary headache that often occurs as continuous daily pain. Although it can fluctuate in severity, it usually occurs on one side of the head or face, and causes additional symptoms like red, watery eyes, blocked nasal passages, and/or a runny nose. 25. Paroxysmal Hemicrania Paroxysmal hemicrania is a rare form of headache that typically occurs in adults. People who live with paroxysmal hemicrania report severe claw-like, throbbing pain that lasts for up to 30 minutes at a time and can occur as often as 40 times per day. 26. Thunderclap Headache Thunderclap headaches are severe, short-lasting headaches that feel like a clap of thunder striking one’s head. These headaches are rare, and often a sign of bleeding in and around the brain or other potentially life-threatening issues. As this list demonstrates, there are many different types of headaches and migraines, and they are anything but all the same. No matter what type of headache or migraine disorder you live with though, know that your symptoms and your pain are real, but they don’t make you any less worthy as a person.

    Community Voices

    How do you show appreciation for the health care providers in your life?

    <p>How do you show appreciation for the health care providers in your life?</p>
    4 people are talking about this
    Community Voices

    Loss brought the gift of intense depression

    In 2021 from August forward I lost my bff, had a stroke, my beautiful son killed himself October 6th, my mother followed 2 weeks later and before 2021 ended 3 more of my family passed. Many say wow that's a lot of loss and to be honest it is. It brought on major depression and PTSD. I got really physically sick afterwards and emotionally traumatized. I'm working on the illness and the emotional trauma is getting better but I still cry quite often trailing my losses. I know that there is a light at the end of this horrible tragedies and I'm aiming for it but it's not easy. Not much is easy these days but I still have hope. I wish for all of you no matter what your going through or what's to come to hang onto hope. There are so many of us that unconditionally care for you and are here for you whenever you need us. Hope does exist regardless of how much pain and suffering. Just reach out and we'll be there.

    18 people are talking about this
    Community Voices

    Help to find direction after major lost towards hope

    Hi my name is Jenice. I'm 61 years old and I suffered major losses in 2021. It began in August with my only and bestest friend dying of an accidental overdose. I had a stroke in Sept. and on Oct. 6 my son committed suicide violently. Two weeks later my mother followed and within the next 4 months I lost a total of 5 of my family members. I have suffered from depression and an anxiety disorder for years so of course these losses were suffocating and caused PTSD, my son being the worse. I was heading towards a light of hope when a nasty thing happened at work making me question a job that I loved and the people I loved with it. Following this confrontation I became ill and fell all the way back to the beginning. I need all the unconditional support, prayers and advice I can be given as I feel pretty wrecked and lost and need to find my way back to that light of hope that I was beginning to find. Being ill and emotionally back at the beginning is not only frustrating but adds to the depression I had already had. Anything anyone can help with would be gratefully accepted and I will try to return the favor in ernest.


    5 people are talking about this
    Community Voices

    I'm new here!

    Hi, my name is 8sbcjb. I'm not looking forward to burying my Dad & my 1st cousin both are severely sick with heart issues. Both have had successfull bypas. It’s been a while since their bypasses my cousin had a stroke last week he’s not able to walk very well but he is speaking my father had a procedure to clear his aorta clog. Unfortunately both of them still feel pretty sick myself and disabled from a very old car accident of which a young girl ran a red light right there on Potranco and Highway 151 the accident made me disable it was a hard hit it was not mandatory to wear seatbelts at that time of which is why I suffered so many injuries I was not wearing it I was not ready was wearing one saying that’s an excuse I’m just explaining of why I got injured very bad. I will appreciate anybody’s experience I had to go through this and or what to prepare for to feel I’m already crying every day. Thank you


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    Community Voices
    Community Voices

    Hi I'm new to this
    I have BPD, Anxiety, Depression and PTSD
    I also am a Deaf person and had a stroke 9 weeks ago. I've been struggling for over 40 years
    There isn't any resource for people like me who have mental health plus Deaf here where I live. I've been frustrating

    1 person is talking about this