I have Ehlers Danlos and because of symptoms my Ehlers Danlos doc at Johns Hopkins would like to have me repeat a Brain MRI that was last done in 2010 and was done because of symptoms. Chiari is often seen in EDS patients. I only had 3 mm of herniation at that time, but the symptoms typical of Chiari continue and are worse. My question is: Can the herniation increase over time?
I don’t mind having the scan because if it doesn’t show Chiari, I would still want to know if something else is going on.
It can, I won’t lie to you. I had my first MRI like you in 2009 was more than due for another one this year. My Chiari was the same as first one. I also like you have Ehlers Danlos. I am glad to hear your doctor sends you for follow up MRIs.
You may want to discuss getting another one soon.
Let us know.
Thanks for your reply! I talked to my Rheumatologist here in Little Rock. She is scheduling the MRI for next week. I’m glad to hear your MRI didn’t show that anything had worsened. I’m hoping for the same, but hope I can find out why symptoms are worse.
Since 2010 I’ve had the headaches, felt off balance, vision blurring and
the severity has varied but is always there. The frequency and severity
cotinues to get worse. I also have POS and drink 90 oz of noncaffeine
liquids and eat 2400 mg salt daily. The dizziness from low blood pressure
is different than feeling off balance. I feel totally fatigued and feel
confused. I could sleep all the time but I don’t. I stay engaged in
church and community service and still do Behavioral Therapy with a child
with Autism. I do those things because otherwise I wouldn’t leave the
house. The fatigue and feeling confused are the worst now. I have learned
to live w/headaches and vision…feeling off balance is worrisome but
still not as bad as the fatigue.
TMy next question was have you been diagnosed wit POTS.
I can relate with so many of your symptoms and problems with vision, hearing, balance, fatigue and feeling like you have the flu.
The best way I know how to cope, is exactly what your doing. There are days when I do not feel like leaving my home. I don’t think it safe for me to. I tend to be more clumsy than normal, vision is blurry so staying home is my best option.
Keeping cool, hydrated is just part of it, sleeping is very important for your recovery times in between your episodes.
If your like me, you hope some super smart person would develope a treatment that works.
Can you think of any other ways to cope when your having these days?
I was diagnosed by Geneticist with POTS and the Cardiologist with POS. I believe it is POS because don’t usually see the tachycardia. There are things that I do to try to help and sometimes they help and sometimes they don’t. I stay hydrated and attempt to do things like taking leisurely walks when it’s cool. Tonight I did and felt better when I got home but now I am really dizzy. I can try something that really helps one day and then another it makes me feel worse. I got a gentle massage last week which usually feels good but I was dizzy and more fatigued the rest of the day. I never know.
Postural orthostatic tachycardia syndrome (POTS, also known as postural tachycardia syndrome) is a condition in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. Other symptoms of an orthostatic nature—occurring in response to upright posture—may accompany the tachycardia.
I am so glad you can relieve some of the symptoms your having.
I understand what they are but like I was saying I agree with the Cardiologist that my heart rate doesn’t go up enough to be considered POTS, but definitely have POS. I rarely feel like my heart is racing.
POS is Postural Orthostatic Syndrome. I have the same symptoms as POTS but I don’t have the T which stands for the tachycardia. My blood pressure drops when I stand up but my heart doesn’t race. I don’t ever have high blood pressure. I drink 90 oz. of decaffeinated liquids and have 2400 mg of salt per day and take Midodrine. I’m always careful when I stand up.
Good advice for someone who has low pressure. I consume a lot of water, Powerade, salt, and my doctors put me on a beta blocker, took me off some of my high blood pressure meds. I got way to low. I can honestly say that a few months off the high blood pressure meds and taking beta blockers have helped.
Glad to know you have some great doctors looking after your care.
Does heat get to you?
Do you get light headed?
Do you grey out?
Have you passed out?
Did you take the tilt table test, if so how did you do?
I didn’t make it ten minutes before I passed out. 5 laying down 3 when I got tilted upright. They got you so strapped in you can hardly wiggle a toe.
Do you have a hard time in the mornings?
I was reading your comments about POTS and I’ve never heard something ring so true for me. I never understood why I can’t exercise when I should be young and healthy and my heart rate gets abnormally high immediately when I try. Simple tasks like walking one flight of stairs is difficult and I am almost always faint and dizzy and short of breath. I feel my fatigue physically through my heart, especially when getting up from lying down.
How did you get diagnosed? Is this connected to chiari malformation?
POTS can be related to a lot of different issues, but if you have both Chiari and symptoms of POTS, have you been diagnosed with Ehlers Danlos? Both of those issues can be related to connective tissue problems.