Just curious, if anyone with elongated styloids/calcifications have ever undergone roaccutane/accutane therapy in the past? I do remember that one of the side effects of this medication is related to painful joints and other “soft” tissues because of them becoming “dryer”. Might that affect various ligaments? Who knows…
So, I used roaccutane about 10 years ago, for 6 months. Anybody else?..
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Hi,
I took roaccutane about 10 years ago and also for about 6 months 
I havent been diagnosed with ES yet, i am still trying to find help…
I started looking for any links (certainly, “correlation is not the same as causation”). https://www.ncbi.nlm.nih.gov/pubmed/3463863 says something about possible calcifications after using etretinates (which is another retinoid drug, not the same as accutane). Wondering if anyone came accross similar research based on accutane patients.
This is an interesting new lead on a possible cause of ES, vdm. There is a growing number of possibilities for causes of ES, & we embrace each new one with great interest. I will read the article from the link you posted. Thank you for suggesting the potential Accutane/Roaccutane ES link. If you learn anything else about this, please let us know.
This article mentions the link between roaccutane/accutane use and stylohyoid ligament calcification
000248881.pdf (1.5 MB)
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Interesting! Not taken these myself…
I read the article, & it refers to the people in the study having been on the isotretinoin for 60 months which is 10x as long as you were on it. It is interesting that skeletal changes have been seen, & of course, there could be a connection to ES, but I would be less suspicious of that being the cause w/ shorter duration use.
Just wondering if people with EDS aren’t processing chemicals differently in their bodies and whether their ligaments don’t somehow absorb/retain minerals differently too 
In that case 6 months might be more than enough for life-long changes…
Good thought, as usual, @vdm. I wonder if anyone (medical professional) has considered this & looked into it. Maybe @Snapple2020 knows something on this subject.
In EDS our connective tissue is weakened and the extra-cellular matrix that surrounds our cells in our skin, bones, blood vessels and tendons and ligaments, provide structural and biochemical support impacted so anything having to do with the ligaments are “altered”. A lot of EDS people have GI and malabsorption problems. They are seeing up to 65% of those diagnosed with POTS have EDS. I have been seeing this number rise in the past 5 years as research progresses. I have recently found there is a significant amount of POTS patients with B12 issues.
I think generally we can say based on our blog and the people that post, a lot of people with Eagles have TMJ issues which is also highly prevalent with EDS patients.
I do know personally that I am a fast metabolizer of novacaines and it is well documented in literature with EDS patients and dental work. New dentists and root canal specialists don’t want to believe me when I tell them how fast numbing agents wear off. I have had some pretty horrific experiences and fired dentists over this issue. I now have premature osteoporosis (also documented in EDS patients) and have had warning signs of this for many years. This alone supports we have absorption problems
I have found a lot of EDS research that is more current is coming out of the UK.I heard recently they are seeing a high prevalence of EDS from those who come from northern European decent but have not seen all the data on that.Ill take a closer look into this issue and post when I find something.
Here is a great book on EDS: https://www.ehlers-danlos.com/understanding-heds-and-hsd-smith/
Here is something I just found " Speech, language, voice and swallowing in the Ehlers-Danlos syndromes"
This is the most up to date book on EDS that I am aware of.
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Thank you for all the great info, @Snapple2020. I know our members w/ EDS will benefit from the links you provided. The title of the second link certainly points to similarities between the effects of ES & EDS.
Hi VDM,
I was on Accutane about 16 years ago for about 6 months. I remember both my achilles tendons/ligaments would be sore and tight when I’d first get up in the morning to walk and then loosen up throughout the day. I also suffered whiplash at the age of 13 or 14 (30 years ago). Interesting that there may be a connection here. Thanks for sharing!
Hi Dizzylady,
I had a whiplash injury when I was 23 to add to my head injury at 13 (landed on the top of my head in a bike accident (before helmets existed). I didn’t start having ES symptoms till I was 57, but I bet styloid elongation started long before then. It just took awhile to create symptoms that were noticeable.
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Hi Isaiah,
I think you are right. About 3 years after my whiplash, I would wake up feeling nauseated and quit eating early breakfasts. By 20 I was very fatigued but doctors could never figure out why I was so tired. I think my styloids were growing and causing these symptoms. In my 30’s the coughing attacks started to be disruptive to my life but not until age 45 (Oct. '19) when I woke up super dizzy that I really started being forced to figure out the problem. Looking back it is really something to think of the impacts on my career decisions due to the fatigue and question of stamina… all from a couple tiny growing bones so deep the the skull base they can hardly be discovered. My husband and I still talk about how unreal this whole thing is! But so so relived to have had a condition with a solution and so grateful to have had the surgery!!
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Hi Dizzylady,
I also had symptoms some years before the obvious/diagnostic ES symptoms that appeared which I realized in retrospect were most likely from my elongated styloids. I’m sorry you had symptoms for so long before you got diagnosed. You made an interesting point about how your early symptoms helped determine your career path. Hindsight can be so interesting!!
This is one crazy syndrome. It kind of sneaks up on us from behind, eh? 
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I agree Dizzy and Isaiah,
I too had a significant whiplash (rear ended) at about age 19. A couple years later I was hit at high speed while I was standing on a ski slope and taken right out of my skis. I remember not being able to move my neck for a couple weeks and passed out briefly from the impact. That was the start of all my problems. To make matters worse, I was a drafter and leaning over a drafting board for hours at a time in my 20’s. I was in chronic pain all the time and remember pretty severe occipital headaches at night. I was under a lot of stress and going thru a divorce which probably didn’t help my neck tension. I remember drinking a lot of wine at night to make the pain go away and relax my muscles.
I sought out care at PT and chiropractors. I eventually progressed to proliferon injections in my neck in my 30’s and when I learned I was hyper mobile. I never really knew that hyper mobile was really my first diagnosis of EDS. The orthopedic docs said my neck was over adjusted by chiropractors. I don’t think that was the case as chiropractic adjustments it about the only thing that takes me out of pain and has been for decades. I think just a whiplash accident alone can give you neck instability as well as cause jaw problems creating a cascade of neck issues. ES being one of them. Personally I think it is chronic inflammation that helps the calcification progress to progress along with neck/shoulder and probable jaw tension. Our bodies adapt (posture) and body positions in unhealthy ways to this process. I have struggled with this most of my adult life but the ES didn’t hit me hard until 2015 at age 58.
Looking back, those severe headaches likely caused me to change careers at age 30. I don’t recall I was conscience of that choice at the time. Sneaks up on us…is right.
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@KoolDude just posted an article https://www.amjmed.com/article/S0002-9343(15)30022-X/pdf about how Vitamin A overdosis can cause Intracranial Hypertension. The same article also mentions isotretinoins (branded as Ro/Accutane), as they are absorbed by the body similarly to the Vitamin A.
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@vdm Regarding Vitamin A and raised intercranial pressure, there are a number of studies linking higher dose of vitamin A intake to impaired Cerebrospinal Fluid (CSF) reabsorption. Here is a case of a woman taking a weight loss supplement containing 1500 IU per pill whose symptoms of intercranial hypertension disappeared after discontinuing the supplement ( 2 pills per day =~ 3000 IU) (Pseudotumor Cerebri Syndrome with Resolution After Discontinuing High Vitamin A Containing Dietary Supplement: Case Report and Review). So since our CFS drainage is impaired, high Vitamin A intake could make things worse. if you think about it, 3000 IU is not huge quantity. I used to take 1500 IU Vitamin A which I discontinued when I learned this. Don’t forget the diet contribution as well. if you are eating green leafy & high protein diet, chances are, you are getting more Vitamin A from there so the combination could raise our circulating Vitamin A potentially contributing the elevated ICP.
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