Forum Replies Created
January 20, 2012 at 10:33 am in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1693
I’ve had a headache like this everyday for over a year.
I lived like that for years. It is still there to a lesser degree but boy did I feel it come back with a vengeance when I forgot to sleep in the soft collar 2 nights in a row. OUCH! Try a soft collar for sleeping and see if it helps. It made a difference for me. Well worth $14.99.
I can’t thank you enough for your input, PalominoMorgan! That is exactly what I have needed. And that has been the problem when seeing other docs, like when I saw my new ophthalmologist and neurologist. Without having a confirmed dx, they give you the “look” if you suggest the possibility of something such as EDS. She has mentioned sending me to a rheumatologist. I’m thinking if I can get EDS dx’d, I would be in a better position to suggest a cardiologist for possible dysautonomia.
So, then, one more question, if you don’t mind, what doc would dx EDS, or would it be my pcp? Thank you again so much
Oh yes. The look. You are with sympathetic docs if all you are getting is the look. When you get the arrogant ones or they get tired of you they flat out tell you “not to get so worked about these things”, “you seem VERY aware of your body”, and the one that drives DrD and I absolutely nuts… “you’re fine.”. I hate that one so much I have a t-shirt design I just need to put to paper. Proceeds to benefit my service dog fund since I’m so “fine”. DrD refers to those lovely physicians as Doc-Tards. You will learn to be a professional patient. Ou are the captain of you medical team. If somebody doesn’t want to be on the team, fire em. Doesn’t matter how big a hot shot they are. If they aren’t working for you, they re working against you.
Now, as for an EDS diagnosis. It can come from any doctor really in theory but to be definitive you will want it to come from an EDS knowledgable geneticist. There are recommended doctors scattered around the country. If you are willing to tell me what state or part of the country you are in I could make some suggestions. If you can afford a plane ticket your best bet is traveling to Baltimore to see Dr Clair Francomano. She is THE EDS expert in our country and sees patients of all ages. In all my time and research I have never heard a single bad word about her. Extraordinary really. I nave seen her myself too and love her. Of course if travel is not an option there are other very good EDS docs around the country too. Knowing where you are or where you could get to would help in making suggestions.
KC, usually a cardiogist will diagnose POTS. They won’t always have to put you through a full tilt table test at a stress lab although many of us do have TTT (tilt table tests) done. Mine showed neurocardiogenic syncope and POTS.
As for your doctors attitude towards an EDS diagnosis… seems even she is confused. On one hand she sees no value because there is no treatment yet she notes you tore your eyelid wiping your eye. What’s going to happen if a surgeon ever tries to stitch you up? Or even a dentist? Sure, there’s no “cure” but there are SO many ways to manage EDS’s effects. It also helps to explain so many things and to put your body in to context for other physicians and medical personnel. You can say I have fragile skin till you are blue in the face. They hear “blah blah blah”. If you say “connective tissue disorder EHLERS Danlos Syndrome type _____” you have a better chance of having your symptoms, concerns, PAIN, etc taken seriously. For a condition that there is nothing to be done about the EDNF manages to pack the lecture schedule FULL for days with experts offering just that; practices and suggestions on how to best manage all the various manifestations of the disorder. The whole “there is nothing to be done” attitude is a holdover from the “benign joint hypermobility” days. There are still WAY too many docs in that camp. Many because they have never been taught or shown otherwise. There absolutely is knowledge in diagnosis and there is plenty to be done to manage EDS.
I wanted you to know that hyperadrenergic POTS and mast cell disease are linked SO STRONGLY. Please keep that in mind as you work on your meds, OK? Benzo’s help us, opioids hurt us (as do NSAID’s, histamine foods, stress… most everything on the FACE OF THE PLANET. OK, I’m exaggerating. Rice seems to be fine. 🙂
This is an article from a bright, young doctor who said the following about the “connection” betweenhyperadrenic POTS and mast cell. I am copying and pasting another person’s account of their appointment with her. They saw her at Vanderbuilt.
“I asked why she had decided there was a Mast Cell connection to H. POTS and she
told me she had been though the Pharmacology Program, and was doing some work in
Dysautonomia, and that she had noticed the similarity in symptoms of people
being seen in the two Departments. (Basically if one went through one Dept, they
would receive one diagnosis; if they went through the other, they would receive
a different one… Mast Cell Disease or POTS.)”
Sounds like depending on which department you got sent to you came out with a different label. Sort of like masto and multiple chemical sensitivity. Is it something different or do all masto people just have MCS?
I had to quit the Florinef after a month. It occurred to me that the 2 weeks of torturous painful high pressure headache when I hadn’t done anything stupid was because of the Florinef. I tapered myself down for a week and then told the prescribing dr, my PCP, that it was a no go. When I checked drugs dot com I saw that it had the side effect of pseudo tumor cerebri, aka intercranial hypertension. I offered two other possibilities I had researched, but my PCP wasn’t comfortable prescribing either for some reason. Outside her comfort zone apparently. Beta blockers were obviously out of question for me given my hypotension so I’m on nothing for my POTS.
Yup I have this. It is more pronounced after I get out of the tub or when I’m really cold. I have noticed that my almost 4 year old is displaying this on her legs and arms now too
I’m also cyanotic. Cyanotic scars on my legs are even noted in some of reports. I’m “fine” though (note the sarcasm) so apparently nobody is concerned. I also have low body temps and my skin surface temps are ridiculously low and cold, even on my torso.January 19, 2012 at 3:21 pm in reply to: numbness in left arm, weird thing…in my tongue, often in my left leg #1685
Not a doctor, but obviously our body is NOT happy about something. Your BP is telling you that. Since you have no dysautonmia diagnosis here is the poor mans tilt table test. NOTE- only do this if you feel comfortable doing it. If you have a BP cuff or pulse ox it makes it easier, but if not you can do this by just taking your pulse. Sit or lay down in a resting position for 10 minutes or so. Long enough for you to feel like our body has acclimated and has calmed down. Take your heart rate (and BP if you can). Now, stand up and immediately take your heart rate (and BP) again. If your heart rate goes up more than 30 beats per minute there’s a problem. It’s called POTS. You can keep standing if you want and take a few more readings to see what your BP and heart rate does but honestly you probably aren’t going to feel good from the sounds of what our have already written.
As for the trouble chewing and tongue numbness, depending on if it’s the front of our tongue or back of our tongue certain cranial nerves are probably being compromised. The 9th cranial nerve is responsible for the gag reflex and the back 1/3 of the tongue. The 7th cranial nerve controls the front 2/3rds of the tongue, salivary glands, and other functions. http://en.wikipedia.org/wiki/Cranial_nerve Nerves can be compromised for lots of reasons but in our situations intercranial hypertension is a good first guess. The 9th cranial nerve is buried deep in the brain and is supposed to be hard to injure.
Anyway, the poor mans tilt table is a good place to start. Here is more info on POTS. http://www.dinet.org/pots_an_overview.htm
Yes, I’m looking for answers but am not jumping up and down to be put at head of the line for surgery. You can’t unring that bell.
No. No need for me to see an endo. *eye roll*
Tried Lyrica. My PCP loves it. I went up and up on doses and got no noticeable improvement. I have who knows how much $$$$ in Lyrica in my cabinet. Useless to me. Sad, huh?
Which subtype are the amazons? Hypermobility type? I know anybody with Marfan traits should be tall. You’d think I’d know this but I feel like its a trick question. Lol.
Welcome my twin. Seriously. We share a lot of the same symptoms. My back sounds like yours but is a train wreck when you see the lumbar and cervical MRI. I was diagnosed last August after I self referred to Dr Francomano. My PCP told me I didn’t have the eyes for EDS. Huh? Per Dr F I do have grey sclera though. Guess she wanted me to have blue? Anyway, per my picking on DrD, myself, and a friend of DrD’s in DrFrancomano’s office about all the tall women there and “what was that stereotype about EDS and tall women?” DrFrancomano replied, “only one subtype. Only one subtype.”. I was feeling short at 5’10” in the waiting room but there are lots of bendies who are not tall.
Anyway, welcome. You are definitely in the right place. You sound like you have EDS, possibly some mast cell issues as well, and those headaches sound an awful lot like high CSF pressure headaches. Try sleeping in a soft collar at night and see if you notice less headache when you wake up. I know it makes a huge difference for me. Raising the head of the bed a few inches can help a lot too.
Have tried Cymbalta. Was halted quickly. Can’t remember exactly why. PCP and I recall it made me “off” very quickly. So, in retrospect we think we know why that class of drugs is a no-no for me. Nerve seems to have calmed down unless I eat.
A true hypochondriac never travels unprepared. ;-D. *please note tongue in cheek sarcasm*.
I’m waiting for part 2 of the Driscoll Theory to drop on my PCP. When I told her who was in the office the same day I saw the geneticist she made a face and said “yeah, what are the odds?”January 2, 2012 at 4:34 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1630
I have a tractor trailer full of issues and per Dr Francomano my skin is not very stretchy at all. I have had college coaches, doctors, massage therapists, and PT’s tell me though that I have somany knots and so much tension in my muscles, especially neck and back, it’d be easier to massage a door than mt back. My PCP has commented that she can see the muscle tightness in my neck from across the room. I have lived like this for as long as I can remember. I assume there was a time I didn’t live with muscle tightness but I don’t remember it. EDS presents differently in all of us, even in the same family.
I have found the most relief from my current PT who uses cranial sacral massage techniques. I would encourage you to try to find a PT, osteopath, or massage therapist who uses the same who can evaluate your daughter’s body mechanics. The tiniest things can make a huge difference.
I would also encourage you to listen to your gut. Mom’s are usually right.