mkoven

Hi Maxine, As you know, very few docs are well versed in there issues. If it were me, I would call Nazli McDonnell amd ask for advice. If you have a hard collar. I would see if it quiets things down. Feel better!

I've recently started having trouble swallowing. I've just been diagnosed with chiari, tethered cord, and cranial instability. Alone or together, each problem can compress the parts of the brainstem that control swallowing. I'm having a swallow study on Monday.

I'm the opposite. i generally feel better in the morning and worse by late afternoon/evening. this holds true for all my symptoms-from ans to joints. i think i fatigue as the day goes on. even before getting sick, i've always been a morning person.

I've posted about this before. Indeed, we are all different, so what works for one may not work for someone else. I am now able to exercise and try to do aerobic exercise 30-45 minutes a day, in addition to a pt regime for myjoints. I either walk outside or on a treadmill with an incline. I feel much better in every way when I exercise. But I know not to overdo-- which means no sudden increases in how long or how hard I go. It took me a year to be able to do what I currently do, adding a minute or so a week, finding which exercises help/hurt, etc. and i've had setbacks. i did cardiac rehab, which helped. it's true i was the one and only ans patient they'd ever had, so i was calling the shots. but it was comforting to be monitored. i learned that i need to walk, as my calf muscles help with venous return-- but this took time. initially my bp kept dropping. i could only begin this regime once I had the right drug combo in place and was fully compressed and hydrated. i can't bike these days without my bp dropping-- so walking it is. i guess i pool too much when seated or i need my calf muscles to be pumping, or??? i make sure to drink A LOT after I'm done and to let my heart rate get under 110 before stopping. so from my experience, I guess I'd say add TINY increments at a time, and try different types of exercise to see if your body responds better to some forms than others. someone else might be able to bike but not walk. and just a year ago, i could barely sit up without greyouts and chest pain. so sometimes there can be a turnaround. Again, I know we are all different, and there are many causes for our malfunctioning autonomic responses, so my experience may or may not be duplicatable by someone else. a lot of people really don't understand how I can walk for 45 minutes but can't stand still long enough for the light to change! this will date me, but there's a line from Annie Hall that my husband had adopted in reference to my being better in motion and not so good when still. Woody Allen says that relationships are like sharks, they have to keep moving or they die. So if ever my husband sees me standing still, he typically tells me "like a shark, like a shark!" and exercise has helped me to be a better shark!

I take tigan with no side effects. It's not very strong, though-- but I like how well I tolerate it. I try to make sure that I always have a dose in my purse just in case. REglan and compazine work for me, but they put me in a foul mood, as they suppress dopamine. I have to remind myself when I'm on them that my state of mind will pass when the drug wears off. Sometimes those seasick acupressure wristbands work for me. recently, I've posted that a lot of my nausea seems triggered by my unstable neck/head. since wearing my neck brace more and being careful with neck posture, I've dramatically reduced how often I need nausea meds. My period also seems to bring on nausea.

do a search on hyperkinetic circulation. sometimes goes along with ans issues.

so the upshot is he doesn't really believe in cranial-cervical instability and thinks the treatment for it is too radical except in extreme cases. he did confirm my small chiari, but could show where the cerebellar tonsils are literally sitting inside the foramen magnum. I also have a tethered cord. My herniated c5-c6 also pushes a little on the spinal canal, esp on flexion. He said any one of these alone or in combination could cause my symptoms. But with all my issues--eds, med intolerances, etc., he is not inclined to operate. if the neck brace helps, great-- new prescription for a comfier one. not clear he wants to help me manage my symptoms, but would be available if I ever got worse. It does seem that these issues are more complicated when one throws in weak connective tissue into the picture. not sure how to reconcile this with waht the previous nsg said. i don't want surgery, but i'm also tired of feeling so bad and having weird conditions that people don't know how to treat.

Hi, We're headed out this morning for two days of appointments with Dr. Heffez (mri's today, docs tomorrow). I'm hoping he will agree that a conservative wait-and-see approach makes sense. I have to say that I am now convinced that head position affects many of my numerous symptoms-- but that doesn't mean I'm ready to get my head fused to my neck!!!

i moved away from the walker to the seat cane, as the walker was forcing me to walk somewaht bent forward, which was messing up my posture, joints, and esp. neck-- and now we know that my neck is playing a role in my various symptoms. seatcanes are cheap, so I dropped the 25 dollars myself.

I've gotten two from amazon-- a three-legged and then a four legged, after the three legged one broke. they aren't expensive. i prefer the four legged one, but it is a little heavier.

Hi Persephone, Would love to, but am in Illinois--about a 2hour flight or 20 hour drive. If you decided to come to Chicago, we could drive up and meet you. Are you presenting? What's your paper on?

yup. i think it's not unusual in the general population. i'm otherwise "atopic"--or allergy prone and have been since forever. i do test positive for allergies to the standard environmental stuff-- pollen, mold, dander. i definitely have Ige mediated reactions. i also have oral allergy syndrome where i've become allergic to numerous fruits and veggies as an adult. this is common in people with pollen allergies. and then there are the reactions to drugs-- many allergic some just adverse. some of this may be connected to ans stuff, but so many people in the general population without pots also have allergies. what drives me crazy are the random reactions out of the blue and the tendency to keep developing new allergies. i always walk around with benadryl and an epipen on me just in case-- like an umbrella. never had to use the epipen, but pop a benadryl pretty often. love those little pink pills-- not. today to be on the safe side, i took a dose before exercising. oh well, better benadryl than prednisone!

I recently learned that my vertigo is caused by cranial-cervical instability, secondary to eds. If I catch it at the start, wearing a neck brace settles it down. Basically, because my head is too loose on on my spine, I'm bumping some of the neurological structures when I move my head, including those key for balance. Otherwise, something like ativan or valium can lessen it.

I may have variant angina and definitely have weird allergic reactions. I take norvasc for the angina, midodrine and florinef for ans stuff. an odd combo to many. i'm allergic to mestinon. if it were me, i'd go where there are the smartest, most knowledgeable docs. if that's vanderbilt, so be it. i would not let someone do provocative testing for the variant angina-- too risky.

this morning i was sitting at the computer typing, when i noticed my arms felt really hot and stingy. i looked down and i was turning red at the inner crease of my elbow, and it started spreading up my arms to my shoulders--big red, hot, itchy splothes. i could feel my legs start to get the same way--like they were cooking from the inside. then everything started to itch, and i was red, hot and visibly splotchy- and in a lot of different places. i took two benadryl and put some steroid cream on the worst spots on my arms. over the next hour it began to quiet down. this happened like thisjust about a month ago--i had just been to the gym and gotten out of the shower. almost identical scenario. it doesn't seem like there was a clear allergen. last time it happened, i figured that the heat from exercise and the shower might have triggered something-- i am an allergic type and do have dermatographism. i'm also on a regular dose of allegra, singulair, and nasonex. but this was completely out of the blue. i suppose it could have been hormonally triggered, though i'm about 10 days into my cycle--if anything, i'm ovulating. mast cell activation? any other thoughts? i do have an epipen in case anything ever escalated. i hope this is not a regular occurrence. i've had weirdo allergic reactions before. the drugs did calm things down, but now i'm intensely sleepy and still feel like there's an underlying itchiness. i was supposed to have a massage today, but canceled, as i feared it might stir up yet more histamines.

Let me echo what Nina said. I would describe my experience w/ emgs as unpleasant--like a mild bee sting or burning your hand briefly on the toaster. But it is shortlived. And of all the pain I've experienced in life, it doesn't really even rate. Pain is individual, of course. what may unbearable to me, is okay for someone else, and vice versa. the worst pain I've ever had would have to be my presurgery sciatica and a couple headaches-- if those were 8s or 9s, the emg was a 4 tops, and maybe a 3. For me, I don't think it had any ans effects. I was also lying down. If I had to have one again, I wouldn't look forward to it, but wouldn't really dread it. Actually, in my case they weren't even that accurate. We knew I had some damage to the l5-s1 and l4-l5 nerve roots that it didn't pick up.

I've been on florinef .075 for a little over a year. I was reluctant at first, because I feared it would be like other steroids, which I generally react poorly to. It really pulled me out of an ans pit with terrible chest pains and inability to be upright. I"d love to not have to take it, but have enough else going on right now that I don't feel like messing with it. My bp is a little higher, maybe ten points on average, than before, but is also much more stable. Usually around 115/75. And I feel less like the floor is trying to pull me down. It made me a little jittery at first, but I no longer notice that. I don't think I"ve gotten sick any more often. I do worry that it might be thinning out my tissues--because I have eds, that's already a concern. but for now, i'll keep taking it. i talked to my eds geneticist about it, and she agreed that if it has allowed me to more or less function when before I could barely sit up, I should continue. There have been a lot of postings on florinef, as it is a commonly prescribed drug for us, so I recommend doing a search.

For those of you with head-neck pain issues, what kind of pillow do you sleep with? As I posted elsewhere, I've been diagnosed with cranial-cervical instability, and the base of my skull/top of my neck is extremely sensitive. I need support but not pressure. I can't count the number of pillows I"ve tried (I'm a back sleeper)--usually either too much pressure or not enough support. I still feel a big crack at the base of my skull along with a headache when I move in the morning--meaning I guess that whatever I'm doing isn't quite enough? I currently use a contoured memory foam pillow, but wonder if there's something better.

Good question. I do think it's somewhat different. During exercise, it seems like your muscles are involved and working in a vigorous way, and ultimately, one should feel good--by producing endorphins. The tachy from POTS never feels like that to me at least.

I'm sure you do know more than he does-- by sheer necessity! Those bp numbers don't look bad, actually, but what is key is that you feel bad. Are you wearing compression? I think I remember that you had knee-highs 30-40. If you are unable to get waist-high without an rx, would you try a really tight girdle? I definitely feel better with abdominal compression, but don't know what would happen to my thighs if I were compressed on lower legs and stomach. It may still not though provide all the help and answers you need. My new sense is that doctors who are also researchers are more likely to be genuinely curious and want to think outside the box. Sometimes doctors who treat a lot of ans patients might have that type of curiosity. But if you are one of a handful of patients with Pots that your doc treats, and he is primarily a clinician, he may not be as interested in pursuing novel approaches and mechanisms. Some docs, however, may be willing to respect your knowledge/be willing to learn with you. It's clear that you are very knowledgeable/educated about health matters. Does your cardio understand and respect that?

the collar helps quite a bit-- which tells us that the instability is an issue. however, when i take it off, i often feel worse. it seems to make me more intolerant of any head movement. i've been wearing it about 3/4 of the time when awake (following nsg's rec). i'm trying to keep the muscles in my upper back/ around my shoulder blades strong to keep me head pulled back and not forward. the collar doesn't eliminate all symptoms- but improves them by maybe 70%? it's quite uncomfortable and I can't sleep in it-- getting some serious pressure marks on my shoulders, chest, and jaw. I hope that at the very least Dr. Heffez can fit me for a better, comfier brace! I wish people would stop staring and asking me to tell them a good story about what's wrong with me. you'd think I had three heads. i'm not super vain, but a little!

Hope they figure out what's going on, calm things down, and release you!

We have now returned to central Illinois, far from the more knowledgeable docs I got to see in DC. I posted earlier that I'd been diagnosed with cranial-cervical instability, with an abnormal clivo-axial angle (so I'm pinching my brainstem when I bend my head), and borderline chiari. The doc I saw in Maryland gave me a hard collar and said that if I were to have surgery, I would need not just a chiari decompression, but also a fusion of skull to c3. Since then, I've developed some new troubles-- difficulty swallowing. It's intermittent, but it seems I'm always getting food down the wrong way and clearing my throat. I talked both to the geneticist and the nsg on the phone, both of whom said this is a related symptom. the geneticist wants me to have a swallow study and the nsg said this means I'm headed down a surgical path. geneticst says we need to make sure i don't aspirate. I'm now scheduled to see Dr. Heffez (5 hours away) in ten days. I really don't want surgery, but it's also scary to think that I'm pinching my brainstem. the swallowing thing scared the $%^ out of me. i'm nervous that he'll be gungho about surgery or try to minimize how major it would be. but now i'm very aware of how bad I feel if I don't keep my head in precisely the right position. this is all scary to me, esp as it seems this not a routine procedure, and not many people know what they're doing. throw in my allergies to a million meds, the dysautonomia that may or may not be related to the problems that might require surgery, etc. This will be nsg number 2. I really hope that he just says he's willing to follow me, manage me conservatively, be available if anything happens, but not tell me it's time. yikes!

good question! I guess a lot of us do a strange combo of overconstricting and over dilating so that an arm measurement doesn't really show what's going on elsewhere--like heart and brain. I've been told than for ans dysfunction, the bp number may not say much about cerebral perfusion. I was told that I needed annual echos. This is from a lead researcher on the genetics of eds. There's a lot that's not understood about the different types of eds--so even without vascular eds, still good to keep an eye on things. They are finding a lot of crossover. still trying to sort out if mine is any bigger. apparently a lot of hypermobile and classical edsers have somewhat enlarged aortas, but they aren't sure if it ever progresses. hence the need for followup.

Sounds like checking in with your ans doc makes sense. You've had a med change recently, no? Since you have eds, it's important not to let your bp stay high over the long haul. Have you had an echo recently? with my recent scare about my aorta size, the doc told me the importance of not letting bp get/stay high.