karen m e

Thanks everyone! I appreciate the feedback. Dizzygirls, I recognize the additional triggers you mentioned too! We haven't tried infusions for the headpain and she takes nothing at all for it as she is super-sensitive to many medications. Her Neuro doesn't feel he can add any meds until her Dysautonomia is better controlled. She's on daily anti-histamines for MCAD and Florinef for severe PoTS/Dysautonomia (she's actually starting TPN very shortly because of the impact the Dys has had on her Gastro system.) . Sunshine, Your situation does sound very similar. A professor of Neuro-Opthalmology we saw was sure that Jordan suffered a contre-coup injury when she fell, causing a mild brain injury. The way you describe your coping techniques is very familiar! At the start of this, Jordan would "watch" her favourite programmes where she could picture the characters and situations, with her chair turned away. She is quite amazing in how she finds other ways of doing things...Pinterest is a favourite because it's pictures rather than text, text to speech for messages longer than a couple of words etc. She thinks she would manage fine with assistive technology in school, even with the pain, if she wasn't so ill and debilitated (she depends on a fully reclined motorised wheelchair and portable oxygen outside the home). It's fascinating that you also got wicked hiccups! Jordan's marathon sessions have coincided with the onset and then, after a week or so of partial relief with the nerve blocks, the return of the bad headpain.....has to be something to it! Looneymom, Jordan also has an area of her scalp which is very sensitive/painful to touch, wash, brush. It is on the same side as her pain but towards the back of her head. Thank you for the suggestion and the articles, I'll definitely mention this to her Neuro! MCbeach, I really hope you find some answers and that the new med helps. Please God you'll all find ways of improving your situations. Heartfelt thanks again for taking the time to reply x

Thanks Katie, Jordan's official headache diagnosis is New Daily Persistent Headache, Migrainous Variant. Because it doesn't throb and doesn't present or respond like a "typical" migraine, the specialist called it that for the sake of calling it something! It's an odd thing because she doesn't get "headaches" , it's just one very long headache that has never left. Do you see Dr H? Jordan is under Prof Grahame and Prof Mathias in London and Prof H's name has come up for some of the issues you mentioned. Her scans were to be reviewed last year but didn't make it that far (they got mislaid)! Any information would be gratefully received. She currently sees a neurologist in London but he is not keen on trying any new meds until her PoTS/Dys is better controlled. I just wish someone could be successful at controlling something! Thanks again Katie and I hope things improve for you soon.

My 18 year old daughter's condition is very complex as a result of EDS III and severe dysautonomia but her very first presenting symptom was a head-pain. My query is whether any here has heard of, or suffers with similar ( and maybe resolved it!) On March 14th 2012, my perfectly healthy 15 year old daughter took a really bad pain in her head (non-throbbing, one-sided (left), behind her eye and up into the front of her head and temple) which was accompanied by severe nausea (she also had hiccups for almost 4 days at the start of the headache). For two weeks, the pain would last for between 20mins and 3 hours at a time and would completely remit (including the nausea) between pains. After two weeks, the pain (always with the severe nausea) became a constant 24/7 background pain (5/10) with peaks (7-8/10) lasting from 30mins to 13hrs straight. This has continued, without a break, for the past three years. The peaks can happen spontaneously but are unfailingly triggered by; - travelling in any vehicle - attempting to focus on text - looking at TV, computer screens, phones - pressing a point at the base of her skull, left side. Since the headache started. she is unable to read as she can only make out text in isolated, single words. She had a simple fall about 3 weeks prior to the headache, where she landed heavily on her upper back and got a whiplash-style injury (didn't bang her head). A CT scan showed tonsillar herniation but subsequent MRI's (including upright) were "normal". Greater Occipital Nerve Blocks didn't help, Multiple Cranial Nerve Blocks took the intensity down for a week or so, Botox did nothing, Lyrica didn't help. She's very poorly now and I suppose, in some respects I'm just trying to bring her ease in some aspect of her condition. Despite three years of searching, I have yet to come across a headache just like this. Her specialist doctors are stumped also. Thank you for reading this. Karen.

Thank you for the kind welcome Sarah and thanks for taking the time to watch Jordan's video x Karen

My 18 year old daughter (EDS III, Dysautonomia/PoTS, MCAD, Gastroparesis, New Daily Persistant Headache--Migrainous Variant), is starting on TPN in the next week or so. This will be her second attempt (first time was halted due to sepsis in her PICC line). She is an amazing girl and remains utterly certain (as do we) that she will return to her previous excellent quality of life. She has done everything that has been asked of her, followed all expert recommendations faithfully and, despite this, has deteriorated massively over the past three years. She is currently unable to be upright for more than a few minutes, dependent on a motorised reclined wheelchair when outside our home, tube-fed (NJ) and on home oxygen as needed. What I'd love to hear is whether people have recovered their quality of life from this degree of debilitation. My daughter feels that TPN will allow the following to happen; # give her digestive system a rest from the constant assault of NJ feeding, currently necessary to maintain her 42-44kg (she's 5'8"). # stop the continuous, debilitating autonomic responses she gets from processing food of any sort. # build her strength / tolerance of being upright, through improved vascular volume from the TPN. (She has always had the most marked improvement on IV saline therapy, although the benefits have gradually lessened over time) # allow her to follow and increase her physio programmes thus leading to more muscle and strength building. This will all combine to affect a "reverse domino" effect and will get her back to health.... Has this been anyone's experience? The video below is my daughter's very brief synopsis of her journey so far. I'd love if you could watch it. (it's only a few minutes long) https://www.youtube.com/watch?v=TJC6Yd-NuwY