Forum Replies Created
I answered my own question regarding the saggy eyelids. That would create binocular diplopia, not monocular diplopia, right? So, what causes bilateral monocular vertical diplopia that’s worse in the morning and goes away by the end of the day?
Mog the Dog here.
Count me in! I have experienced sleep paralysis since I was 3 or 4 years old, and yes, my episodes sometimes last between 30 – 45 minutes. When I learned that it is simply a conscious awareness of being in REM sleep (in which we are normally paralyzed to avoid acting out our dreams), I began to experiment with relaxing and then bringing on pleasant dream content. This works in relieving the horror of feeling like someone is sitting on me and not letting me move.
Daytime napping makes sleep paralysis more likely to occur. Waking up in the middle of the night and getting up for awhile before going back to sleep is another trigger for me.
You should consider getting a sleep study done (so should I!). Sleep paralysis can be associated with narcolepsy. I have not yet found any research linking it directly to any other disorders (other than sleep disorders).
Thanks for this interesting discussion. I have been experiencing the weird muscle cramps as well over the past few months. The cramp I get in the muscle below the little finger that allows it to move away from the other fingers is weird but not too painful. The cramps in the lower legs can be excruciating and relentless.
I have tried upping my potassium intake but have not yet managed to eliminate the leg cramps (which occur mostly in the middle of the night). The article about the relationship between magnesium and potassium was interesting – thanks for the link!
MTDAugust 23, 2015 at 11:15 pm in reply to: Question re General anesthetics and POTS and MCAD and EDS… help please #5639
Why is the dentist requiring that general anesthetic (GA) be used for tooth extraction? Which teeth are being removed? Is there concern that local anesthetic will be insufficient due to the EDS?
I would be leery of any dentist that requires the use of GA for tooth extraction. It’s a risk/benefit issue and you are wise to be concerned about the use of GA. We all know it does not come without risks. The cynical part of me also knows that there is more profit to be made for the dentist when GA is used.
I had my baby eye teeth removed when I was 6 (due to a tooth crowding issue). Both teeth still had roots, and, despite the use of local anesthetic (Novocaine), I could feel a brief sharp pain in my face when each was pulled. I remember crying a little bit, but when all was said and done, it was really no big deal.
It sounds like you need a second opinion here if the dentist will not give you options regarding anesthetic. It would also be interesting to go to a different dentist without discussing what the previous dentist recommended just to see if you will get the same recommendation about the tooth removal.
MTDAugust 10, 2015 at 2:08 pm in reply to: A Relationship Between Brain Organization and Ehler-Danlos Syndrome #5597
Our family has symptoms of EDS, hypermobility type. Each family member has a different presentation of joint laxity although shoulders and ribs seem to be most affected. It makes me wonder what process is taking place during fetal development to make some joints more hypermobile than others.
As far as brain stuff goes, our family seems like is has more than our share of anxiety and mild depression. No one has been diagnosed with autism but some could possibly have undiagnosed mild autistic-like behaviors. On the plus side, everyone in the family has tested out with high IQ (all in top 2%). Don’t know if the high IQ is related to the EDS thing or not because the older generation members that are not on the EDS side of the family have high IQs as well.
You are asking some fascinating questions that I hope will be answered sometime in my lifetime!
I have been tested for lupus so many times over the years that I could have qualified for a patient role on House M.D. (For those who never watched the show, they had a running joke that “it’s never lupus”.)
And, no, I don’t have lupus either. The rheumatologist who screened me for lupus the first time back in 1990 was the one who diagnosed me with Ehlers Danlos Syndrome, hypermobility type (8 out of 9 on the Beighton scale).
I understand your squeamishness about seeing a physical therapist. I finally took the plunge this past month after almost 40 years of symptoms, and I am so glad I did! I traveled over 1,200 miles to see Jerry Hesch in Aurora, Co. He is outstanding and well-versed in both hypomobility and hypermobility issues. Do a Google search on him and see if he may be of benefit to you (he has lots of educational youtube videos to watch even if you don’t go to see him).
I have absolutely less than no interest in ever seeing a “big box store” medical specialist ever again for my EDS, narcolepsy-like sleep disorder, or platelet disorder. What a waste of time and money it has been for me. Instead, I do my own research of the medical literature and correspond with researchers and people like Jerry who have a life-long passion for learning and helping people with chronic, complex health problems.
Living with EDS has been both an arduous journey and a curious adventure, and I am glad for the opportunity to have met and shared ideas with so many interesting people over the years. I can only hope for such an intriguing adventure for you in your quest for answers and relief from all the suffering.
MTDJuly 27, 2015 at 10:48 am in reply to: Sunday Night is Rib Night in Ehlers Danlos Syndrome Land #5575
Truth be told, I am not just winging it in my attempts to improve the state of affairs in my ribs. I recently consulted with Jerry Hesch, a highly knowledgeable and competent physical therapist located in Aurora, Colorado. I look forward to sharing the results of my experiments in the coming weeks.
Jerry has also been a remarkable source of input in my efforts to stabilize an unstable pubic joint that resulted from a pelvic injury during childbirth over 25 years ago. Yes, I have endured pain this many years because I long ago gave up on the idea of getting any help from a doctor. I am sure many of you can relate to this state of learned helplessness that is common after uncommon EDS-related injuries.
Jerry is the first person I have met who has been able to help me drag myself out of the pit of “what’s the point.” After getting an assessment and treatment plan from Jerry a couple of weeks ago, I am now both curious and hopeful that I can improve the quality of my physical health even if I can’t eliminate the underlying disorder.
I am happy to report that I am making noticeable progress as of week three. I’ll post more about the details after a few more weeks of applying an SI belt at the level of the pubic joint. I’m also looking forward to sharing the results of my rib experiments.
MTDJune 11, 2015 at 12:56 pm in reply to: Does anyone else have a problem with cellulite? Plus a question about sleep paralysis? #5532
Thanks for the link to the previous forum discussion. Your experience appears to be very different from sleep paralysis (the REM sleep parasomnia) even though it was occurring during the transition into sleep. I am glad to know that you did get some relief after all those years of suffering.June 8, 2015 at 7:29 pm in reply to: The Problems with a Conversion Disorder "Diagnosis" #5517
I, as well, did my undergraduate work in psychology and left the field for similar reasons. It may be, in part, why I get so frustrated with the current state of affairs when I read case studies like the one Dr. Barnum shared about the 8-year-old with EDS who was referred to a psychiatrist instead of getting the proper care for her medical condition.
In any event, I am grateful for the passion you bring to the table when it comes to advancing our knowledge of viable strategies for treating people with EDS and all that goes with it.June 8, 2015 at 12:59 pm in reply to: The Problems with a Conversion Disorder "Diagnosis" #5515
Yes, I hope I live to see the day that we make enough progress in our understanding of the human body that the “psychogenic” label gets permanently relegated to the past.June 5, 2015 at 7:25 pm in reply to: The Problems with a Conversion Disorder "Diagnosis" #5506
For the record, I have never been diagnosed with a conversion disorder and would never allow it to be put on my medical records if a doctor ever suggested it to me.
I agree with Dr. Barnum that labeling a patient with “conversion disorder” can be destructive, and I applaud him for summarizing what doctors can do to support patients when no clear diagnosis can be made.June 5, 2015 at 6:58 pm in reply to: Does anyone else have a problem with cellulite? Plus a question about sleep paralysis? #5505
Isolated sleep paralysis is not considered dangerous. It typically lasts a few minutes or less (although in rare instances can last over an hour – gasp!). As far as I know, it is not related to Ehlers Danlos Syndrome (EDS), mast cell disease, or POTS.
Sleep paralysis is considered a parasomnia (something unwanted that occurs during sleep or during the sleep/wake transition). It often occurs in those with narcolepsy, so if you also suffer from the other kind of EDS – excessive daytime sleepiness – and you experience hallucinations either upon sleep onset or upon awakening, you should consult with a sleep specialist.
I have experienced all of the symptoms of narcolepsy except for cataplexy, so I am quite familiar with how frightening an episode of sleep paralysis can be. I eventually learned that when I get myself locked up into the dreaded sleep paralysis state, I am actually in REM (aka dream) sleep and can dream anything I want. As soon as I start lucid dreaming about something nice, I either drift back into total sleep and don’t notice the paralysis or I wake up with a smile on my face. It’s taken a long time to develop this skill, though.
So it appears that the headaches start when the estrogen is at its lowest and continue until the estrogen levels start rising before ovulation.
It sounds like your estrogen levels are unusually low, which can cause debilitating headaches. Some women have found relief from these cyclical “low estrogen headaches” from taking magnesium supplements. Ask your doctor about it. Taking a magnesium supplement sounds safer than adding synthetic hormones to the mix plus all of the other risks that come with the Mirena.
After doing extensive research on hormonal effects on loose joints, I learned that everyone’s experience with hormone therapy, including the Mirena, is unique. That being the case, only you know best whether to try it. You will find some people saying that the Mirena was an easy solution to their problem while others will tell you it was like being dragged through hell.
The research does show that some women experience a worsening of their EDS-related symptoms while taking progesterone (check out Howard Bird’s Hormonal Aspects of Hypermobility), so I opted to avoid taking any hormones except when I had to in order to stop menstrual hemorrhage. The only thing I noticed while on progesterone is that I became excessively emotional and would find my self in a crumpled heap, crying uncontrollably at times. I’ll opt for a headache over that. On the other hand, I lost over 4 pints of blood during one period, so the progesterone was a life saver for me.
How old are you and when did the menstrual cycle headaches start? During what part of your cycle do you start getting the headache, and how long do your periods last?
Even if it was conversion disorder, the terrible unaddressed side effects I developed in the subsequent months (microscopic colitis, joint pain – I have EDS) are enough to make that oversight pretty grievous for me. It’s time for a switch, for sure.
Any time a doctor “diagnoses” you with conversion disorder it is time to find a new and improved doctor. There is no way to diagnose conversion disorder with validity, and labeling patients with it tends to do more harm than good.
Check out this article for more information on the psychological damage that can be done when medical doctors label patients with conversion disorder:
Sad but true, the case study presented in the article involves a child with EDS.
The author of the article, Richard Barnum, M.D., also gave a good presentation on this controversial topic at the 2013 TCAPP Think Tank:
Best wishes to you in your quest for answers!