Seven things cluster headache patients wish society understood

U.S. Pain Foundation

By Ashley Hattle

Invisible diseases are among the most challenging conditions to live with because you not only struggle with pain and symptoms, but also judgment and misunderstanding from those you love the most. Cluster headache patients face this stigma for many reasons: We tend to isolate ourselves during attacks and episodic cycles, and talking about it can bring on post-traumatic stress disorder (PTSD)-like symptoms. “Clusterheads” live in fear of the next attack.
While there are countless things we wish our friends, family, and medical professionals would understand, if the public knew the following things, our disease would be taken more seriously.

This image has an empty alt attribute; its file name is Seven.jpg

1Cluster headaches are different from migraine.

“It’s not a migraine,” says Deborah Marcus. “Dark rooms, quiet, [and] resting do not help. Pacing around or finding ‘positive distractions’ are what can get me through episodes.” Cluster headache is one of the trigeminal autonomic cephalalgias, and a primary headache disorder completely separate from migraine disease. The typical treatments and behaviors for cluster headaches are vastly different. The pain is searing and stabbing around the eye and temple, causing restlessness and agitation. We hit ourselves on the head with our hands or blunt objects, moan and scream, and dream of removing our eyeball.

The attacks are strictly one-sided, lasting 15 minutes to three hours, and occur several times a day. No one—no one—has just one cluster headache attack, so comments such as “Oh, I’ve had one of those,” come off as hurtful.

2You can recognize “suicide headaches” without diminishing other disorders.

“It’s not invalidating migraine or any other pain condition to acknowledge this condition is very severe, [with] high suicide rates, and debilitating,” says Heidi Marie. “The majority of people know what migraine [disease] and tension-type are, but not cluster.”

Many patients have faced disbelief and been told they’re exaggerating during an attack. They’re not only dismissed by their loved ones, but also by the medical community. Cluster headaches are nicknamed “suicide headaches” because they make otherwise healthy people seriously contemplate ending their lives.

“I’ve had one vaginal birth and three C-sections. Combine all of the pain you experience through all of those together, and you still don’t come close to an inkling of the pain that is caused by one cluster attack,” says Amanda Dapson.

3Psychedelics can be an amazingly effective treatment.

“The medicinal use of LSD has changed my life living with clusters. I’ve been so amazed with how well this treatment has worked for me… real and lengthy results,” says Becki Neuenschwander.

Psilocybin mushrooms and lysergic acid diethylamide (LSD) have been studied for their efficacy in treating both episodic and chronic cluster headaches. A 2006 study at Harvard University found that both psychedelic substances could abort attacks and that even more patients found that it could end their episodic cycle. Psilocybin and LSD users in the study reported reduced severity and longer remission periods. These substances even worked in patients who didn’t respond to traditional treatments.

4We struggle to get more than 1-2 hours of sleep.

“Lack of sleep is a real thing. I can’t get more than two hours at a time while in a cycle,” says Ben Merrick, adding, “which makes attacks worse, which makes it hard to sleep, which makes attacks worse… ”

Cluster headaches typically come with nocturnal attacks that wake you from rapid eye movement (REM) or “dream” sleep. It’s difficult for clusterheads to get more than 90-120 minutes of sleep at a time. That’s bad enough for one night, but imagine going weeks and months surviving on so little sleep.

5Oxygen treatment is most effective but hardest to get.

High-flow oxygen is the best and safest option to abort cluster headaches, but this treatment is the one that patients struggle the most to obtain. Whether the delay is caused by doctors who have misguided notions of “oxygen toxicity,” or insurance companies and oxygen suppliers who don’t understand its necessity, patients can spend years trying to get access to oxygen.

Many insurance suppliers won’t cover the cost because the Centers for Medicare and Medicaid Services refuse to list 100 percent oxygen as first-line treatment. Then, when patients do get the tanks, they must fight for the proper regulator, buy their own non-rebreather mask, and learn a specific breathing technique.

6We live in fear of the next attack.

“My attacks happen roughly around the same time, so when I’m in the bedroom crying and not at the table, I don’t want to hear whispers… Trust me, I’d rather be eating meatballs and pasta with you,” says Sally Nee-Brady.

Some clusterheads can set their watch by their attacks, as cluster headaches occur at the same times each day for weeks, months, or years on end. We live in fear of 10 am or 2 pm because we know “the beast” is coming for us again. PTSD, depression, and agoraphobia can quickly take over your life as you watch the clock tick.

“The anxiety of knowing that you are about to have an attack, and there is little to nothing you can do to stop it, is overwhelming,” Merrick says.

7Cluster headaches are as common as Parkinson’s disease.

Much of the research on cluster headaches has been funded or instigated by the patient community through Clusterbusters. Despite the documented severity and high suicide rate, there’s a severe, ongoing lack of funding and research.

“This is not a rare disease,” says Eileen Brewer, President of Clusterbusters. “It’s as prevalent as Parkinson’s disease. Cluster headache should not be riding on the coattails of any other diseases. It is a serious, debilitating, and deadly disease that deserves much-needed attention.” •


Ashley Hattle is a medical and fiction writer who has experienced episodic cluster headaches since 2007. She is the award-winning author of Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man and a traveling advocate for patients with the neurological disorder with Clusterbusters, Inc.

What doctors and patients can learn from each other


U.S. Pain Foundation

By Abigail Chua, DO, and Katie M. Golden,PP (professional patient)

Headache Specialist Abigail Chua, DO, and Katie M. Golden—a self-proclaimed professional patient—candidly unravel best practices for creating a successful partnership.

First appointment jitters

Dr. Chua: Katie, what’s your biggest pet peeve when you see a health care professional for your headache disease?

Katie: I feel like I’m auditioning to gain a spot in their clinic. I prepare for three to 12 months. That’s a long time to get stuck in my head and think of all the possible outcomes. Then all of my hopes and dreams could go down in flames if we don’t vibe.

Dr. Chua: You make a good point. To a doctor, this visit is a normal part of their work day, but to you as a patient, it could be a significant life event that has caused excitement and maybe anxiety for months.

Learning moment: Health care providers should remain empathetic. And patients should remember that they are evaluating their doctor, too. Don’t think of it as an audition. Reframe it as an opportunity to find the headache specialist who best suits your needs.

Preparing for your appointment

Dr. Chua: Most headache specialists ask patients to fill out a questionnaire in advance of their appointment. While these seem tedious, they help focus on the specific details of your headache. Without it, your visit may not be what you’re expecting because it may limit what your doctor can safely prescribe for you. I often wonder why some patients become upset when they’re asked to fill these out.

Katie: Honestly, I’m exhausted just thinking about it. Brain fog makes completing a task in one sitting difficult. Then I think, will you even look at it? And what about medical records? No joke, I have a box filled with notes, diaries, pathology reports, and scans that weighs 40 pounds!

Learning moment: Remember that it’s about quality, not quantity. Don’t bring 40 pounds of your medical records, but do bring:
Your completed questionnaire. (Any good headache specialist will review it.)

Recent imaging scans, like an MRI or CT scan. If possible, bring copies of the actual images as well as the written reports. List of current medications, including over-the-counter medications, that you take for all your medical conditions; not just headache. List of previously tried headache treatments and your reactions to them.

Mental health and migraine

Katie: Why do I have to see a psychiatrist? Migraine is a genetic, neurological disease that is not my fault, so being told I need to see a psychiatrist, psychologist, or therapist makes me think you don’t believe me.

Dr. Chua: Understand that a mental health referral does not mean “it is in your head.” Pain doesn’t just affect you physically; it causes feelings of anxiety, sadness, hopelessness. Some people develop healthy coping skills and have a solid support system, while others just aren’t equipped with the right tools.

Learning moment: A good treatment plan is a multidisciplinary approach that addresses all the ways that headache diseases and comorbidities are affecting a person.
Alternative methods
Dr. Chua: Many people use alternative treatments in addition to traditional medications. Katie, what do you use?

Katie: There has to be a balance of medications and “self-healing” practices often referred to as complementary and alternative medicine (CAM). For me, that may mean yoga, but for others it could be meditation, reiki, herbal supplements, essential oils, or acupuncture.

Dr. Chua: I have a certain set of criteria that I ask patients when they ask about alternative treatments. They should make sure that the treatment isn’t illegal, isn’t going to harm them, won’t put them into debt trying to get it, and makes at least some kind of medical or scientific sense. If these criteria are met, then I am usually open to them trying it.

Learning moment: There are many alternative treatments available to patients. However, natural does not mean safe, so tell your doctor everything you’re doing or taking.

Goals and expectations

Dr. Chua: There is currently no cure for migraine and headache diseases. The goal of headache medicine is not to “fix” your headaches. Instead, my goal is to help improve a patient’s quality of life by finding ways to manage their disease, so that despite their headache, they are able to live the life they want.

Katie: When my headache specialist told me that I was chronic and there isn’t a cure, it was a punch in the gut. I had to accept that migraine had taken up permanent residence in my body. My perspective changed and I stopped chasing a cure that doesn’t exist.

Learning moment: “No cure” doesn’t mean it’s hopeless. Many new treatments are in the pipeline. Find a headache specialist to help manage your disease, but keep your expectations realistic: Not everyone will become headache-free. •


Abigail Chua, DO, is a double board-certified neurologist andheadache specialist at the Hartford Healthcare Headache Center in Connecticut. She is also the program director of its Headache and Facial Pain Fellowship Program, as well a previous INvisible Project participant. Dr. Chua also has chronic migraine, giving her a unique perspective into the world of headache.

Katie M. Golden is the Migraine Advocacy Liaison for the U.S. Pain Foundation, contributing editor of the INvisible Project, and director of Patient Relations for CHAMP (Coalition For Headache And Migraine Patients). Writing and advocating have given back the power that chronic migraine had stolen from her.

Review of Aromalief Hemp Pain Relief Cream *New Affiliate Information

I love Aromalief Calming Pain Cream so much I’ve become an Affiliate. When you make a purchase thru the links you will help fund my coffee habit. You won’t be charged more for using the link.

https://www.aromalief.com?sca_ref=244289.feW8IbRFn2

Thank you.

Aromalief Hemp Pain Relief Cream Sensitive - 4oz

I’m reviewing Aromalief Hemp Pain Relief, Hemp 1000MG as a member of Chronic Illness Bloggers http://chronicillnessbloggers.com and have not received payment for my review.

I was thrilled to find the product is cruelty-free, vegan, PETA approved, and in a relaxing Lavender scent. I have not tried Hemp cream products before because of the smell and was eager to see how well the cream worked.

Here’s some information about Aromalief

What about the safety of the product?

Aromalief is made in an FDA registered facility and each ingredient has a Safety Data Sheet and Certificate of Analysis. We buy only high-quality ingredients from reputable suppliers and do our own internal testing for everyone’s peace of mind.

How do you make sure Aromalief is Vegan and Cruelty-free?

Every ingredient that we source comes with a written letter from the ingredient manufacturer that the product does not contain any animal ingredients and that they do not test it on animals. The manufacturing line also has a strict vegan-only policy. Aromalief is proud to have PETA’s Vegan & Cruelty-free designation.

What type of pain is Aromalief good for?

Pains of the body and the soul. This includes muscle, joint, nerve, and chronic pains PLUS stress, anxiety, and sadness. Our ingredients are the best in the market to help relieve pain due to arthritis, back pain, herniated discs, carpal tunnel, tennis elbow, and more. If your type of pain isn’t listed here, we still encourage you to try it. If it doesn’t help you, then simply return it. Have a little faith and try Aromalief.

Aromalief Hemp Pain Relief Cream Sensitive - 4oz

 My Affiliate link:

https://www.aromalief.com?sca_ref=244289.feW8IbRFn2

The cream has a subtle lavender and menthol scent, not overpowering. I have slightly sensitive skin and the cream didn’t cause any sensitivity.

It rubs in quickly, no greasy fingers on the keypad. It has a warming sensation that eases inflammation. I focused on three areas, the neuropathy in my feet, sore shoulder muscles, and arthritis in hands.

Right away I noticed a difference in my feet, they could touch each other without pain. It lasted long enough for me to go to sleep. My shoulders are always tense and I have a problem relaxing at night. I used the cream on my worst shoulder and it did warm up the muscles helping me to relax.

The thing I love the most about the cream is how well it worked on arthritis in my fingers, I also noticed neuropathy relief in hands. The fact that the cream dries enough to get right back on the computer is a huge bonus.

I have already bought two tubes to make part of my daily self-care. Aromalief is a great everyday hand cream too.

Aromalief Hemp Pain Relief Cream Sensitive - 4oz

https://www.aromalief.com?sca_ref=244289.feW8IbRFn2

Please check out their website at http://aromalief.com.

A special thank you to Annabel at Aromalief and Chronic Illness Bloggers http://chronicillnessbloggers.com.

Melinda Sandor

 

 

 

Review of Aromalief Hemp Pain Relief Cream

Aromalief Hemp Pain Relief Cream Sensitive - 4oz

I’m reviewing Aromalief Hemp Pain Relief, Hemp 1000MG as a member of Chronic Illness Bloggers http://chronicillnessbloggers.com and have not received payment for my review.

I was thrilled to find the product is cruelty-free, vegan, PETA approved, and in a relaxing Lavender scent. I have not tried Hemp cream products before because of the smell and was eager to see how well the cream worked.

Here’s some information about Aromalief

Aromalief Hemp Pain Relief Cream Sensitive - 4oz

What about the safety of the product?

Aromalief is made in an FDA registered facility and each ingredient has a Safety Data Sheet and Certificate of Analysis. We buy only high-quality ingredients from reputable suppliers and do our own internal testing for everyone’s peace of mind.

How do you make sure Aromalief is Vegan and Cruelty-free?

Every ingredient that we source comes with a written letter from the ingredient manufacturer that the product does not contain any animal ingredients and that they do not test it on animals. The manufacturing line also has a strict vegan-only policy. Aromalief is proud to have PETA’s Vegan & Cruelty-free designation.

What type of pain is Aromalief good for?

Pains of the body and the soul. This includes muscle, joint, nerve, and chronic pains PLUS stress, anxiety, and sadness. Our ingredients are the best in the market to help relieve pain due to arthritis, back pain, herniated discs, carpal tunnel, tennis elbow, and more. If your type of pain isn’t listed here, we still encourage you to try it. If it doesn’t help you, then simply return it. Have a little faith and try Aromalief.

Aromalief Hemp Pain Relief Cream Sensitive - 4oz

 

The cream has a subtle lavender and menthol scent, not overpowering. I have slightly sensitive skin and the cream didn’t cause any sensitivity.

It rubs in quickly, no greasy fingers on the keypad. It has a warming sensation that eases inflammation. I focused on three areas, the neuropathy in my feet, sore shoulder muscles, and arthritis in hands.

Right away I noticed a difference in my feet, they could touch each other without pain. It lasted long enough for me to go to sleep. My shoulders are always tense and I have a problem relaxing at night. I used the cream on my worst shoulder and it did warm up the muscles helping me to relax.

The thing I love the most about the cream is how well it worked on arthritis in my fingers, I also noticed neuropathy relief in hands. The fact that the cream dries enough to get right back on the computer is a huge bonus.

I have already bought two tubes to make part of my daily self-care. Aromalief is a great everyday hand cream too.

Aromalief Hemp Pain Relief Cream Sensitive - 4oz

Please check out their website at http://aromalief.com.

A special thank you to Annabel at Aromalief and Chronic Illness Bloggers http://chronicillnessbloggers.com.

Melinda Sandor

 

 

 

Fibromyalgia Thoughts #2

I’m reposting for Fibromyalgia Awareness Month.

Melinda

Photo by Anna Shvets on Pexels.com

The pain has moved to my lower body, it attacks every joint and muscle I have. For the past 10 days, my leg has caused a big problem, it’s hard to walk. Any pressure on my leg makes me scream out in pain.

I can’t stand up by myself unless there are objects strong enough to pull me up. My husband isn’t a little guy and it takes two or three tries because I start to cry out. I have no idea what is happening, this level of pain is new for me. It’s not so much the level but the time in constant pain.

I’ve been going to bed between 4:30-6:30 p.m. every night thinking resting is the only answer. So far that seems to be the case. I can now move my knee closer to a normal sitting position. Try getting on and off the toilet, it’s been a painful 10 days.

I’ve forced myself to bed in order to get better. I’m not looking for total pain relief, that’s not my goal. Right now I want to be able to get out of a chair by myself. The rest of my body feels the normal everyday dull pain, my shoulder still screams out at night. Pain meds, topical patches and ointments the doctor gave me on Friday have provided no relief.

I’m laying in bed with one leg balancing the computer, trying not to walk any more than I have to. It’s a beautiful day after the storms we had yesterday, I want to see what the damage to my flowers but it will wait.

I am feeling significantly better by resting but letting life pass me by is not my personality. I always try to bulldoze my way through any pain but I’ve never cried or had this level of pain. I remain optimistic this is not the new norm if there is a norm with Fibromyalgia.

I started a new book which helps me go to bed earlier and stay connected to the world. Tomorrow is a new day, a day with possibly less pain. 

 

Tried and tested products for migraine

INvisible Project

U.S. Pain Foundation

By Jaime Sanders

Google “migraine products” and more than 48 million search results come up. How do you even begin to weed through options to find something that will help you manage your symptoms? Below are several products that have been put to the test by the migraine and headache community, and come out on top.

Note: These products are being provided as additional tools for you to use as you fight to manage your headache symptoms. U.S. Pain Foundation does not specifically endorse any of these products.

Cryotherapy

Migraine Hat
Co-developed by Lisa Jacobson, founder of The Daily Migraine, Migraine Hat is an ice/compression therapy hat made specifically for people who live with migraine and chronic migraine. The Migraine Hat includes two reusable Cryo-Gel Ice Packs that stay cold for four hours, and pulls over the eyes and ears to block out light and sound. The wrap-around design contours to the shape of your head and stays securely in place while allowing you to adjust to your comfort or to target pressure points: bit.ly/migrainehat

The Catalyst Cryohelmet is a tool designed to help alleviate migraine and headache pain and concussion symptoms, as well as promote sleep. The cool packs stay cold for at least 90 minutes when they are frozen solid. They remain flexible so they can be wrapped around the head and neck. The Cryohelmet features moisture-wicking fabric, an insulating neoprene shell that is latex-free, and drawstrings to adjust the fit: cryohelmet.com

Icekap Therapeutics
The Icekap, developed by Andrea Jones, who lives with migraine, combines cryotherapy, heat, aromatherapy, and compression to help alleviate the pain, inflammation, pressure, and swelling caused by migraine. The essential oil component of the Icekap combines the calming properties of lavender with the cooling properties of peppermint. With the adjustable pressure band, users can target the compression of the cap to key areas (occipital, frontal, parietal, or temporal): icekap.ca

Precision-Tinted Eyewear

TheraSpecs
TheraSpecs was developed by Hart Shafer, whose wife, Kerrie, lives with debilitating migraine. The precision-tinted glasses are designed to filter lights from fluorescent lights, computer screens, and bright sunshine that trigger migraine, headache, and eye strain. When worn regularly, the glasses can help reduce the frequency of attacks. The frames are ultra-lightweight and flexible so as to not add any extra pressure to already sensitive areas. Many styles offer wrap-around protection to block and filter light from the sides: theraspecs.com

Axon Optics
Axon Optics provides therapeutic eyewear for migraine and light sensitivity. Founder Bradley Katz, MD, PhD, a neuro-ophthalmologist, studied the pain pathway associated with migraine and photophobia. Through his work, the company developed the SpectraShield FL-41 migraine glasses lens for indoor and outdoor sunglasses. FL-41 improves light sensitivity by blocking out blue and green wavelengths of light, which are thought to be a problem for patients with light sensitivity. Axon Optics also offers glasses for blepharospasm (BEB), as well as indoor sunglasses: axonoptics.com

Protection From Outside Triggers

WeatherX Earplugs
WeatherX is a pressure-regulating device that provides a proactive way to manage weather-related migraine and headaches before they start. At the first sign of headache, you place the devices, one in each ear, for 2 to 4 hours or until symptoms have alleviated. WeatherX includes a ceramic inner filter that regulates air flow in and out of the ear canal, which helps mitigate shifts in weather pressure. It has four rings for a snug, comfortable fit and is made of soft, cleanable, hypoallergenic silicone. A free app can be set up to alert you when weather pressure shifts are happening near you, prompting you to proactively begin using the earplugs: weatherx.com

Aculief
Aculief is a wearable acupressure device that uses your body’s own endorphins to help relieve headaches and migraine attacks naturally. It provides pressure to the LI4 acupressure point, which has been used for thousands of years to provide natural headache and tension relief as well as promote your body’s natural energy: aculief.com

Vogmasks
Vogmasks are unique face masks designed to be reusable and fashionable. These masks are especially useful in blocking many external triggers that often exacerbate migraine symptoms. It provides protection from airborne particles such as dust, allergens, odors, scents, mold, and more: vogmask.com •


Jaime Sanders is the author of the award-winning blog The Migraine Diva. She is a member of CHAMP (Coalition For Headache And Migraine Patients), and the Headache and Migraine Policy Forum. Jaime works with the Society for Women’s Health Research Interdisciplinary Migraine Network and sits on the Patient Leadership Council with the National Headache Foundation.

Share this:

Lyme Progress #9 Don’t Inspect-What To Expect

I’m updating this post for Lyme Diseases Awareness Month and in celebration for the Memorial Day Holiday. I’ve added more photos so you can see how all-encompassing Lyme Diseases is.

I’ve recently been diagnosed with Hypogammaglobulinemia which is an autoimmune disorder of the blood. If severe enough Plasma Infusion Therapy is required.

Here’s what Wiki had to say:

Hypogammaglobulinemia is a problem with the immune system in which not enough gamma globulins are produced in the blood (thus hypo- + gamma + globulin + -emia). This results in a lower antibody count, which impairs the immune system, increasing risk of infection.

I’ve never wanted a blood transfusion in the past and lucky one was never required. I don’t know how I feel about plasma, there isn’t really an option. Your body must have white blood cells to fight off every type of infection including the common cold.

I saw a Hematologist who thankfully told me I don’t have bone marrow cancer and referred me to an Immunologist. I had a Telehealth appointment with the Immunologist only to find out he no longer does Infusion Therapy and has to refer me to another Immunologist. Be sure you ask if the Immunologist you’re referred to does the Infusion Therapy before your appointment in case it’s needed. 

He went ahead and ordered blood work for which I had to go to the lab during this crazy time. A lab with sick people is the last place I wanted to be. They were working by appointment and only allowing four people in the waiting room which made me feel better.

The feeling of comfort went away when the person in front of me didn’t have on a mask and was not offered one, worst the lady behind the desk was wearing her mask on her chin and coughed. What the Hell! Now two weeks later I find out my lab work is lost.

Next week I start over. It’s calling the doctor’s office, asking for the referral, and letting them know there isn’t a need for blood work since he doesn’t provide the needed therapy.

Can I say for sure this new autoimmune disorder is tied to Lyme? No, but I can’t forget the words of my doctor when I was first diagnosed, Lyme will cause other autoimmune disorders and illnesses. My change is health is proof of what he said is true.

PLEASE take Lyme Diseases serious. I can’t stress enough how important prevention is, use 20% DEET in your spray or sunscreen, and checking for ticks is a critical part of prevention.

Melinda

Update February 27, 2020

Warm weather is right around the corner, I know some of us are experiencing freezing weather but Spring is around the corner. The south will start to feel great outdoor weather in a matter of weeks. Lyme has left made my life hell, I don’t want you or anyone you love to go thru the same painful illness.

Please remember!!!!! There is no cure for Lyme and the diseases you get from your immune system being compromised can be life-threatening. As you go for the first hike, long walk with the dog, picnic with the kids, make sure you prepare for ticks. You don’t have to see cows or be anywhere near cows. A silly notion. The only sure way to prevent the ticks don’t stick to you is 20% DEET.

I didn’t want to use DEET in the past, and that was just to ward off flying bugs. DEET is the only recommenced prevention for tick-borne illnesses. Please educate yourself before blowing off the idea. The option is not worth the small risk of using DEET.

I will continue to send out a reminder as we move into warmer weather. I also plan to post an update on my health progress from living with Lyme.

Melinda

Photo by Pixabay on Pexels.com

As the temperatures warm the chances of encountering ticks increase. I had a PA recently say we don’t have Lyme in Texas, what? Yes, Lyme or tick boring illnesses are in every state. Some states have a higher percentage of cases but dot fool yourself, tick-borne illnesses are in every state in the United States. There are now 30 strains of tick-borne illnesses and more are discovered each year. This year a more deadly tick-borne illness, Powassan Disease was discovered and it’s the most deadly. Please take notice and protect yourself and your children.

This post is a combination of photos, snippets from the previous posts, and new information. If you have questions visit ILADS website for the most accurate information on tick-borne illnesses. This association is for doctors who treat Lyme, educators of Lyme, and the medical community who are there to increase knowledge.


I am walking after four years spent in bed, how could anything be worse than Lyme Disease? The illnesses Lyme leaves behind are debilitating and worst. I’ve lost four years of my life, screaming in pain, narcotics, nine months of twice a day IV Antibiotic Infusion Treatments. I can not stress enough how dangerous Tick-Borne illnesses are, they can kill you and your children. If you already have a compromised immune system, your starting behind the curve. I’ve talked to many at WordPress with Chronic Lyme, many of them spent 10-15 years before diagnosis. Think of the pain and isolation of our fellow Bloggers went thru.

People have said we don’t have ticks, for one Lyme and Powassan Disease is transmitted by many sources other than ticks, mosquitos, sand flies, are just a few culprits. In the wild animals of all types of animals die, many pests visit the buffet. The critter who is carrying Lyme disease bites you and there is a short window for medical attention.

The flying pest target is blood, they have to eat. They don’t discriminate on where they go for lunch. The ticks who carry Tick-Borne illnesses are smaller than a grain of rice, try to find that while doing a tick check, you will not see them.

Before you get dressed, spray sunscreen with insect repellant with 20% DEET. Reply every hour if sweating or in heavily wooded areas. Wear white socks with your pant leg tucked in light-colored pants. Wear a white or light-colored shirt, a hat that is longer in back to cover your neck. Be vigilant with your kids, if playing outside, spray. Better safe than sorry.

Most important, do tick checks on you and the kids throughout the day. Take some tape and if you see a tick don’t touch it, pull it off with tape. While out hiking wear light colors, tuck pants in socks, wear a hat that covers the back of the neck. Lyme Dieses is not sexy.

Watch these extremely important videos and educate yourself. Know the early signs and a short antibiotic treatment may provide a cure. The bulls-eye rash talked about by doctors only happens 30% of the time.

The Lyme test doctors use only cover a few of the 30 strains of Lyme. I’ve had multiple tests over the past four years and not once did I show positive for Lyme.

https://www.aol.com/article/news/2017/05/03/tick-borne-illness-worse-than-lyme-disease-powassan-virus/22067432/

 

Chronic Lyme disease causes other chronic illnesses in its wake and new illnesses can pop up at any time. I now suffer from Fibromyalgia, Dementia, Neuropathy, loss of balance, and other cognitive issues. My life is not back to normal and never will.

Chaos

State of Living
Seven days of IV’s

 

 IV Antibiotic Infusion Therapy

 

Sterile Living

 

Medical Waste

 

Port Inserted

 

Container for sharps

B12 Shots

Meds first three months

 

Port Removed
Shaved Head
Wig
Crowded Bedside Table
Staying organized 
Tracking computer 
My Brain waves.