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    Community Voices
    Community Voices


    I have been diagnosed with IIH (idiopathic intercranial hypertension) there is to much pressure on my brain. They dont know why which is why its called idiopathic. I had a cerbal venos stent place in my brain in February. My headaches were better for 2 months now they are back to what they were when i started. Excrutiating pain, (i would have 5 babies instead of this pain) my doctor wants to treat it as migraines and im telling you this is not migraines..they did a spinal tap and found raised pressure still after the stint. No shit sherlock!! I am starting another water pill. Which sucks! And just having a hard time functioning and not relapsing. I find it very hard because i have nothing dor pain except these injections i go to get. They help for 12 hours but i also in a way "crave" them because it kills the pain. I have been dealing with this for 6 years constantly in pain. I have a very high pain tolerance but the headaches now are taking me down and out for the count. Somedays i feel like it would be better just to let go. But at the same time i cant do that because I have kids and couldn't do that to them or my husband. He has been my strength through all this. Tomorrow i start a new pill...again! To try and help. Idk what im trying to gain by telling you all this...maybe i just need to vent. All I want to do is sleep and kill the pain. I'm very scared about relapsing and also can't help but wonder if what i use to do is now considered as "karma" now??? This diaghas also given me memory problems. I have also been told there are abnormalities in my ways of thinking so now i go in for more testing because of that. Im tired....im tired of being poked with needles, im tired of being told what this is not... im tired of hearing well we could do this. Fucking fix me please just fix me. I lride my self on always being different but just this once I want to be "normal" i am tired of being in chronic pain. Im tired of being knocked out from injections. Im tired of going to the fucking doctors. Im scared. Im depressed. Im tired. If you read this all the way through thank you and I appreciate you!! Thank you for reading my venting session.

    3 people are talking about this
    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

    10 Things I Want People to Know About Mental Illness

    Part 1 of 2 May is #MentalHealth Awareness Month and as someone who has been battling, and sometimes winning with #MentalHealth, here are 10 things I want people to know. It’s not by any means an exhaustive or extensive list, but it does lay out what I’ve learned and continue to advocate for.

    1. #MentalHealth is a Medical Condition.

    Yes, it’s the brain that is trying to cope with chemicals that are not being produced or are missing. If we understand this, then number #2 will make sense.

    2. For Some Individuals, Medication Is Necessary.

    We have come a long way to reduce the stigma of needing to take medication to help our brains stabilize and regulate, but we’re still not there. If you were missing insulin, you would take it. If you were suffering from #Hypertension, you would take meds to help with that.
    Medication for the brain is the same. If you need it, you need it.

    3. Language Matters.

    When someone says they are “depressed,” it doesn’t always mean they are clinically depressed. #Depression is a #MentalHealth that can be clinically diagnosed and affects the brain, its functions, and the body as well. We all can feel sad about something but that doesn’t mean we are depressed. Leave the terminology to the people who actually need to use it to describe their clinical status.

    4. #MentalHealth Can Take Lives.

    Yes, it can. I don’t know why we need to hide this or be embarrassed to talk about it. I’m no longer embarrassed to say that I have been suicidal or that I fight this still. The more we start accepting that people feel this way because they cannot control what is happening in their brain, the more we prevent people from being isolated and alone- which means we are saving lives. #MentalHealth can be so insidious and dark, that it will literally suffocate someone. If talking about it and getting people to talk about it saves lives, then I’ll yell it from the rooftop.

    5. So Many People Are Carrying Heavy Loads We Cannot See.

    I know there are great people out there doing great things like curing people, making products to better our lives, and winning medals. But let me tell you who I think are the most amazing beings- those fighting #MentalHealth. They have to endure day after day a slew of symptoms that they don’t want and sometimes you’ll never know how much they’re carrying. Yet, they wake up everyday knowing that tomorrow will be better and that there is hope. They fight their own internal rhetoric that they know is trying to bring them down, and they fight through everyday tasks that seem so easy for others. Things like taking a shower can be a triumph and eating a meal can be life saving. Imagine waking up with the flu everyday and having to fight to go to school, to work, or family functions, all while putting on smile? The amount of masking individuals with #MentalHealth have had to endure is mind blowing and although I hate to use the word resilient, I don’t know a group of folks who deserve this title more.

    6. Universal #MentalHealth Care Now.

    How do I say this any louder so that we actually do something drastic to change things? We have a heart problem, we see a cardiologist. We have a kidney issue, we see a specialist.
    We have a broken leg, we see a doctor.


    If we have a #MentalHealth we need psychiatrists and #MentalHealth practitioners. Yes, #MentalHealth is health, so then everyone should have access to covered #MentalHealth clinical supports. No apps or on line webinars will take the place of clinical supports, OK? They may help a few but for God’s sake would we be telling heart patients to fill out info on an app to get medical attention ?!

    7. Therapy is Necessary.

    I don’t know why we think that talking to someone to help us figure out how to best help ourselves is optional. I’ve learned to cope, uncover, gather information, empower myself, and learn to heal by seeing different therapists. It’s a personal thing so finding the right one is important

    3 people are talking about this
    Community Voices

    Undiagnosed, trying to navigate the healthcare system.

    I've been trying to get answers about what the hell is wrong with me for so long I am starting to lose hope. Growing up my parents thought I was just a hypochondriac. Then when I was able to start going to doctors visits on my own and was diagnosed with #PCOS at the age of 15/16 I finally had proof that some if my symptoms were real.

    I was finally diagnosed with #mitral vavle prolapse at the age of 26. Turns out that I've had it my entire life but no one cought it until just recently. In addition to the mitral valve prolapse I was also diagnosed with #CongestiveHeartFailure #rectocele #vaginismus #lymphadenopathy #BipolarDisorder #Hypertension #Sleep apnea and #PelvicFloorDysfunction .

    I also fit the criteria for a lot of other conditions but I'm having a hard time getting clear answers from my doctors as to wether I do or do not have these other conditions.

    Does anyone else find it difficult to actually get a diagnosis from their doctors? Even when you meet all of the criteria for such diagnosis?

    My current issue is that I'm trying to get in to see a geneticists to get tested for #EhlersDanlosSyndrome and other connective tissue disorders. In order to do so you have to provide a lot of documentation showing why you should be tested for genetic conditions. Part of this documentation would include the conditions that you've been diagnosed with. But since I have not gotten an official diagnosis for many of the conditions I suffer from I don't have a way to include them in the documentation to send to the geneticist and I have been denied an appointment twice now.

    It's like a puzzle. I need my doctors to help identify the missing pieces so that I can go to the geneticist and have them complete the puzzle but I am so tired of having to push and push and push to try and find doctors that are willing to run the tests and not just give up before the missing process are identified.

    Why is the process so difficult? On top of it all I have suffered from #Undiagnosed #ChronicFatigue for the past 8 years and I just don't have the energy to continue fighting. But if I don't continue fighting then I'm only going to continue to decline. It's a never ending loop.

    5 people are talking about this
    Community Voices

    Ambien good or bad

    I have fibromyalgia, RA, raynards desease, major depression. High blood pressure and lupus. My other half says I’m addicted to ambien and need to find a new drug. He said that about all my meds so I stopped taking all of them. So I’m raw dogging all the deseases and wondering when will be the day it all will stop. What are your thoughts on this. He feels how I feel is from the ambien. Ambien let’s me have 2-3 hours of a break of my pain. I don’t know what to do. Help

    6 people are talking about this
    Community Voices

    Heavy pain/headache for days sore neck/shoulders ect.. ?

    Hi haven’t posted in here for a while as my IIH has been great for the first tome in forever! Lol 🙌🏼 ☺️ I was started on Candesartan medication for high blood pressure months ago at the RVI which really helped with my migraines ect.. but the past 4/5 days I’ve been in agony if I’m honest just a really heavy feeling on my head especially at the back as if someone sitting on my head down my neck across my back just feels so sore heavy and generally achy, it’s like the top of my head downwards.. and just won’t seem to go away, my eyes also feel so heavy and weird (which this all sounds a bit weird ha but.. 😮‍💨😖 x

    Community Voices

    Nowhere to go from here

    <p>Nowhere to go from here</p>
    31 people are talking about this
    Megan Glosson

    Types of Migraine Medications: A Guide to Prevention and Treatment

    If you ask me, medications can be one of the most confusing parts of any health condition. However, migraine medications can be especially confusing because there are different types of medications for different reasons, and sometimes people take multiple medications depending on the day. Plus, as more doctors spend time researching migraine, more medications hit the market, which throws everything off-kilter. Whether you are new to your migraine diagnosis or a veteran who is looking for better options, you may want to know how migraine medications work and what options are available to you. Well, luckily for you, this list breaks down the most common types of migraine medications based on whether they help with prevention, acute treatment, or can be purchased over-the-counter. Preventative Migraine Medications Many people with migraine use preventative medications to reduce the frequency and severity of migraine attacks. People who are prescribed these medications take them daily or receive them as injections monthly or quarterly. While there are many different preventative medications available to migraineurs, they fall under four main types of preventative medications: antihypertensives, anticonvulsants, antidepressants, and CGRP inhibitors. Antihypertensives typically treat high blood pressure, but can also help prevent migraine attacks. Common antihypertensives used for migraine treatment include lisinopril (an angiotensin-converting enzyme inhibitor), propranolol (a beta-blocker), and candesartan (an angiotensin receptor blocker). Most doctors believe that these medications prevent migraine symptoms by lowering the blood pressure of the individual using them. Unfortunately, these medications can come with side effects. Furthermore, since they lower blood pressure, they can cause issues for individuals who already experience low blood pressure. Anticonvulsants, which are also called anti-seizure medications, can also help people experience less frequent and less severe symptoms. Topiramate (Topamax®) and valproate (Depakote®) are commonly used anticonvulsants for migraine. These medications are also used for epilepsy, and researchers believe these medications work as a preventative for migraine because the two conditions share several characteristics. However, anticonvulsants aren’t a great preventative option for everyone, especially women who also use birth control. They can also cause many side effects, including nausea, dizziness, tremors, or tingling in the arms. Believe it or not, some antidepressants also work for migraine prevention. More specifically, some tricyclic antidepressants (amitriptyline) and SNRI antidepressants (Effexor) help prevent migraine attacks by affecting chemical levels within the brain. As an added bonus, these medications can also help if people live with a comorbidity of depression with migraine. More recently, doctors have started using calcitonin gene-related peptide (CGRP) inhibitors for migraine prevention. Unlike the other migraine preventative options out there, these come in the form of injections that can be self-administered or administered by a healthcare provider either monthly or quarterly. Although Aimovig is the most commonly recognized CGRP inhibitor available, there are several different options. Finally, some people receive Botox injections as a migraine preventative. Typically this is only an option for people with chronic migraine, and are administered quarterly. With any of these preventatives, your doctor will need to weigh the pros and cons with you to determine which options may be best based on your health and any other underlying conditions. Furthermore, your insurance may impact your ability to receive some of these preventatives, especially in the case of the CGRP inhibitors and Botox injections. Abortive Migraine Medications Unfortunately, even the most effective preventative medications don’t stop migraine attacks completely. For this reason, many people who live with migraine rely on acute medications, also called abortives, on an as-needed basis to help stop migraine once a person notices the first signs of an attack. Abortive medications include: triptans, nonsteroidal anti-inflammatory drugs (NSAIDs), ergotamines, CGRP antagonists, and dihydroergotamine (DHE). Although they are often the topic of migraine memes, triptans are some of the most commonly prescribed acute medications for migraine. These medications are specifically designed for migraine management and come in a variety of forms. In fact, there are triptans available as tablets, injections, and even nasal sprays. There are a total of seven types of triptans available. Triptans work almost like serotonin and essentially reverse the effects of migraine. When taken early enough, people find these abortives highly effective. Unfortunately, triptans are not recommended for hemiplegic migraine, nor can anyone with a history of heart disease or hypertension take these abortive medications. They also come with a fair amount of side effects. While typically available as over-the-counter medications, prescription NSAIDs are also available for the treatment of migraine. These medications are usually most effective when taken in the early stages of a migraine attack, and can even be taken alongside triptans in some cases. Unfortunately, NSAIDs can impact a person’s digestive tract, especially the lining of the stomach and intestines. Furthermore, NSAIDs commonly cause rebound headaches in people who take these medications more than 10 times per month. CGRP antagonists are a relatively new type of acute migraine treatment. These medications essentially decrease artery inflammation, which essentially stops a migraine from escalating. Currently, there are three oral CGRP antagonists available with FDA approval, and studies show these may be the most effective form of migraine abortive yet. Dihydroergotamine (DHE) is another prescription abortive available. Although it is primarily used in emergency rooms, it has become more available to the general public in recent years. It works rapidly to narrow blood vessels and relieve other symptoms of migraine. It can be used both during prodrome and during the headache or attack phase for relief. DHE is a great alternative to many of the other acute migraine medications out there because it comes in many forms, including nasal sprays, intravenous infusions, and injections. Over-the-Counter Migraine Medications People who live with migraine often rely on many over-the-counter medications to help with their symptoms as well. These are typically pain relievers that can help with acute migraine treatment or as a preventative.Common over-the-counter medications for migraine include: Acetaminophen Ibuprofen Naproxen (Aleve) Aspirin Aspirin + Acetaminophen + Caffeine (Excedrin, Goody’s) While these medications can help with migraine pain, they can also cause rebound headaches and other unwanted side effects. Anyone who experiences 10 or more days of migraine attacks in a month should consider replacing over-the-counter medication use with other options if at all possible. As you can tell, there are countless options out there for migraine medications. However, most of them fall under one of three main umbrellas (preventative, abortive, and over-the-counter) as a part of one of about a dozen categories of migraine treatment. Hopefully, this list makes the confusing world of migraine medication a little easier to understand. Just remember — it’s always best to consult a doctor who specializes in migraine and ask the right questions before starting on any type of medication or other treatment for your migraine symptoms.

    Sarah Zellner

    The Long-Term Health Impact of Preeclampsia During Pregnancy

    May is Preeclampsia Awareness Month. Preeclampsia is the number one pregnancy disorder facing pregnant people today, and it doesn’t necessarily end when you give birth. Preeclampsia, eclampsia, and HELLP syndrome are all considered hypertensive disorders in pregnancy. Most people think that once the baby is out, everything will be fine. They don’t realize there are quite serious potential long-term side effects of having had preeclampsia. In 2007 I gave birth to my first child. He was born prematurely due to early-onset severe preeclampsia. I also went on to develop eclampsia. I came far too close to death giving birth to my son, and it nearly took his life too. Fast forward to 2010, I gave birth to my second child. He was also premature due to early-onset severe preeclampsia. Lastly, in 2011 I gave birth to my twins. This was now my third time developing early-onset severe preeclampsia and I also developed HELLP syndrome. I never had high blood pressure prior to having preeclampsia and it did not go away after giving birth. I continued taking my blood pressure medication as prescribed and my doctor assured me that it just happens sometimes. Sometimes BP goes back to normal, but that doesn’t always happen. Nobody seemed worried, so I wasn’t worried. That is until about five years out. I woke up one day and I just couldn’t move. I could barely breathe and when I did stand up I had to sit within about two minutes. I felt awful. This progressed for a few hours, so I went to the ER. The following day I was diagnosed with atrial tachycardia and a flutter. They blamed my consistent high blood pressure for these heart issues. Another five years went by and I had a stroke. At this time I was seeing neurology and cardiology specialists. After a long series of various tests, it all came back to the common denominator of preeclampsia. Ten years later preeclampsia still had a hold on my life; how is that possible? Well, according to The Preeclampsia Foundation, “Women who have had preeclampsia have three to four times the risk of high blood pressure and double the risk for heart disease and stroke.” Research also shows that those who give birth prematurely, have an SGA baby, and those who have had it more than once have higher risk factors. This does not mean that every person with preeclampsia is going to end up like me, or even remotely close to what happened to me. This is to make you aware so you can discuss options now with your doctor on maintaining a healthy heart lifestyle. I never thought any of this would happen to me. I had no idea what preeclampsia even was prior to getting it, and unfortunately, there is no way to know who will develop it. There are certain characteristics that put you at higher risk, but I had none of them. Some people may have all of them and not get it. It’s terrifying how fast it can come on. I encourage all pregnant individuals to do a little research on it. Know the symptoms. This goes for those who have had it as well. Please look into these potential side effects and know the symptoms. I am not the same person I once was. I hope by relaying this message I can help prevent possible heart disease and/or stroke in other survivors of preeclampsia.