Dysautonomia caused by Silent and Ocular Migraines
I have to take a moment to give you some back story on this as I had no idea I had migraines until I was diagnosed with silent chronic migraines. Yes, it is possible to have migraines without a headache! Who knew?!?
Back in 2016, I was having dinner with my brother and sister-in-law and my eye lids were spazzing out like crazy. Finally had to say something – it was driving me nuts! Without a pause my sister-in-law, whose dad is a retired ophthalmologist, mentioned that he would say that is a visual migraine! WHAT?!?! Like most chronics I began researching the heck out of this. I found out there are visual or ocular migraines. After tracking the symptoms, I did contacted my neurologist and his nurse confirmed what I my sister-in-law diagnosed in seconds (thank you, Lara!)! There are many symptoms of this as well but for me I experience eye lid spasms and eye shifting.
Chronic migraines can cause dysautonomia or otherwise known as autonomic disorders. Since I could not explain this any better, Dysautonomia International Organization states,
‘Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.’
You will find many people with EDS also have an autonomic disorder such as POTS. For more information go to:
http://www.dysautonomiainternational.org/page.php?ID=34
www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm
Wisconsin Resources
Dr. Thomas Chelimsky (Neurologist) Froedert & The Medical College of WI 92000 W. Wisconsin Ave. Milwaukee, WI 53226 414-805-6196
If you would like to purchase a book below just click on the picture and you will be taken directly to Amazon.
Book Recommendations
POTS Together We Stand: Riding the Waves of Dysautonomia by Jodi Epstein Ruhm
Dysautonomia, POTS Syndrome by Frederick Earlstein
Hypermobility Ehlers-Danlos syndrome (hEDS)
Hypermobility Ehlers-Danlos syndrome (hEDS) is an inherited disorder of connective tissue (one mutated gene and one normal gene is passed along). It is related to having faulty collagens resulting in excessive tissue laxity. Collagen is a major structural protein, forming molecular cables that strengthen the tendons, the skin, and internal organs including heart, lungs, gut, bladder, eyes, and ears. Collagen provides structure to our bodies, protecting and supporting the softer tissues and connecting them with the skeletal structure. Since hEDS is not simply about joints with an extra range of movement, but that it affects the body systemically it is a multisystemic disorder. While there are 13 types of EDS, hEDS is the most common to have.
When I had the diagnosis of Hypermobility Syndrome (HMS), it was more about chronic pain but I knew I had all these other weird illnesses. It was when I was diagnosed with EDS-HT, the puzzle began to come together. It also became more serious in that connective tissue is all over the body. It become overwhelming in every sense of the word.
For more information I recommend going to http://www.ehlers-danlos.com
Wisconsin Resources
Children’s Hospital of Wisconsin (please note both departments are able to diagnose and work with both Adults and Pediatrics)
Marfan Syndrome and Connective Tissue Clinic
Dr. Michael Earing 414-266-4757
*Lindsey Katzmark is the clinic’s nurse practitioner and she is a fantastic person to meet with and a great resource
Genetics Dr. Ronald Basal 877-607-5280
*Please note these are very specialized doctors and there is a wait to get your first appointment. You will find this to be true of many doctors who know about or specialize in EDS since it’s so rare. I know it’s difficult to be patient but it’s worth it.
If you would like to purchase one of the books below just click on the picture and it will take you directly to Amazon.
Book Recommendations
Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type by Brad Tinkle
I have read this book at least 3 times for different reasons. This book also comes with me to new doctor appointments – as if Dr. Tinkle is there with me!
A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type): Bending without Breaking by Isobel Knight
I will provide more book recommendations as more have been published recently that I need to read!
Sensory Processing Disorder
Sensory integration is a neurological process that occurs in all of us. We take in sensory information from our bodies and the world around us. Our brains are programmed to organize or ‘integrate’ this sensory information to make it meaningful to us. This integration allows us to respond automatically, efficiently, and comfortably in response to the specific sensory input we receive.
Sensory processing refers to the way the nervous system receives messages from the senses and turns them into responses. For those with Sensory Processing Disorder, sensory information goes into the brain but does not get organized into appropriate responses. Those with SPD perceive and/or respond to sensory information differently than most other people. Unlike people who have impaired sight or hearing, those with Sensory Processing Disorder do detect the sensory information; however, the sensory information gets “mixed up” in their brain and therefore the responses are inappropriate in the context in which they find themselves.
Another way to look at it is SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. SPD exists when sensory signals don’t get organized into appropriate responses and a child’s daily routines and activities are disrupted as a result. Children get ‘stuck’ and have no control over their bodies because their brains are different.
For more information I recommend www.spdfoundation.net
Wisconsin Resources
Waukesha County Birth-to-3 Program http://www.waukeshacounty.gov/BirthToThree
For Waukesha County Residents, a referral can be made via phone or fax. Please call the Department of Health and Human Services at 262-548-7212 from 8:00 a.m. to 4:30 p.m. Monday through Friday, excluding holidays For Waukesha County Residents, a referral can be made via phone or fax. Please call the Department of Health and Human Services at 262-548-7212 from 8:00 a.m. to 4:30 p.m. Monday through Friday, excluding holidays.
Milwaukee County Birth-to-3 Program
http://county.milwaukee.gov/DSD/Children-Services/Early-Intervention-B.htm
Referrals can be made from 8:00A.M. to 4:30P.M., Monday through Friday via: Phone: (414) 289-6799 (English & Spanish)
Voicemail is available 24 hours per day, 7 days per week
Children’s Hospital of Wisconsin
Multiple locations Occupational Therapy 414-607-5280 http://www.chw.org/medical-care/physical-and-occupational-thearpy/
New Berlin Therapies 2815 S. Mooreland Rd. New Berlin, WI 53151 262-782-9015 www.newberlintherapies.com
If you would like to purchase one of the books below just click on the picture and you will be taken directly to Amazon.
Book Recommendations
Sensational Kids: Hope and Help with Children with Sensory Processing Disorder by Lucy Jane Miller, Ph.D., OTR
I recommend starting with this book first if you have not read anything about SPD.
Costochondritis
Costochondritis is inflammation of the cartilage that connects the ribs to the breastbone and given where it is located it can hurt so bad it feels like you are having an heart attack. In fact, some of you may have gone to the ER thinking you were having an heart attack but thankfully you were not but then what in the hell is going on? Well, most likely it is costochondritis. Given the different areas it can hurt even under your breasts and can feel like you are having breast pain when it’s underneath or the sides of your ribs.
Please, look into this further, but when my costochondritis flairs up I find a position that makes it hurt less, very careful with how I am breathing to get the pain down, I’m on the couch with my heating pad and I take an OTC anti-inflammatory. But that is what works for me! It would be good to try ice packs too – try different things to see what relieves your pain.
Regardless, this one is scary and painful so know you are not alone and hang in there as best as you can. When in doubt either call 911 or get to the ER.
For more information I recommend going to:
www.mayoclinic.org/diseases-conditions/costochondritis/basics/definition/con-20024454
Symphysis Pubis Dysfunction
Symphysis pubis dysfunction usually occurs during the second trimester but it can occur in the first, third, and cause a lot of post-pregnancy issues. Either way it is painful, debilitating and not easy to live with. But there is help and support.
For me I had no issue with my first pregnancy or L&D and then with my second pregnancy within about 6 weeks it felt like ‘the baby was going to fall out’ even though she wasn’t. It took one session with my physical therapist to know what was going on and what I needed to do. I won’t lie, it was a painful and annoying issue thru my pregnancy and I had complications after my C-section but it got better. 2 ½ years later I am 95% better meaning on occasion I can feel it shift but overall it is fine. Every story is different with this as I have found but here is what I do know: with the proper diagnosis and treatment it can get better.
The best medical professionals to properly diagnose is a Physical Therapist and you need someone who specializes in treating it so don’t be afraid to ask. Remember be your advocate!
For more information I recommend going to:
http://www.physio-pedia.com/Pubic_Symphysis_Dysfunction
Lymphedema & Chronic Swelling
Lymphedema is a condition in which excess lymphatic fluid collects in the interstitial tissue and causes swelling in varying parts of the body. This disease process can develop because of anything that changes, blocks or interrupts the flow of lymph within the lymphatic system. Examples of insult to the lymphatics include infection, trauma, scar tissue, surgical procedures, cancer and cancer treatment (surgery and radiation), chronic venous insufficiency and genetic disorders. Untreated lymphedema can lead to decreased function and mobility in the affected limb, skin breakdown, infection and other complications.
Chronic swelling tends to occur in different areas of the body or even the entire body. People who have connective tissue disorders and/or dysautonomia often have lymphatic systems that are “stuck”. This sounds easy to recognize and diagnose, unfortunately that is not always the case. It is not uncommon to be seen by multiple doctors, even in the same specialty, and they are scratching their heads because certain criteria’s are not met. The swelling is obvious, but it’s not because of the traditional reasons.