firewatcher

CONGRATULATIONS!!!!!! I was very tired and nauseas during my first trimester with both my boys, but the second and third trimesters were much better! One good thing about being pregnant is all the water you will retain, you may feel better than you have in a long time. Good luck and keep us posted! Jennifer

Honey, It will be OK! I know it hurts now, when my first marriage ended, I wanted to be an old maid! I never wanted anyone ever again, I did not want to get that close again. Perhaps he will come around, perhaps he won't, if he does not, then he was not for you. I actually found my husband of 13 years (so far) through a dating service! You will never find perfect, but you may get close. If there is nothing that you want to change about the man, and there is nothing he asks you to change about you, that's about as close as you get. Hang in there and have a good cry. It will get better. With much love and support, Jennifer

What kind of doctor do you see for that?

Since finding you all, I have found more questions than answers, so here goes... Can you have a mild hypermobility? Like weak, easily sprained ankles and large joint hyperflexibility? My shoulder is slightly out of joint every morning when I wake up (depending on which side I sleep on, and it pops back in once I raise my arm) and I can go into a full split without warming up at any point in the day (was great for karate!) My joints don't hyperextend, but the range of motion exceeds most "normal" people. Am I simply blessed with flexibility? Or is this something that I need to bring up to a doctor? My chiropractor also says that my skull does not sit straight on my spine and that my atlas bone is 20mm higher on one side than the other I don't want to fish for symptoms, but I don't want to miss anything either. Just wondering. Jennifer

At the moment, my lymph nodes are so swollen that my husband asked, "what's wrong with your neck?" You can see them lumping out from under my jaw, but I am also sick with some unknown virus he brought home and shared with all of us. I feel like I've been hit by a truck and then it backed up and parked on me and I sound like a frog. Croak...

OK, here's a really nutty one: have you been checked for gut parasites? This is from Wikipedia on IgE: In biology, Immunoglobulin E (IgE) is a class of antibody (or immunoglobulin "isotype") that has only been found in mammals. It plays an important role in allergy, and is especially associated with type 1 hypersensitivity.[1] IgE has also been implicated in immune system responses to most parasitic worms[2] like Schistosoma mansoni, Trichinella spiralis, and Fasciola hepatica,[3][4][5] and may be important during immune defense against certain protozoan parasites such as Plasmodium falciparum.[6] It would explain the high IgE levels and perhaps your ongoing digestive issues. I have NO idea how they check for parasites.

Lindajoy, Singulair is a mast cell stabilizer and is now being used to treat allergies as well as asthma. It may be worth a try, but leave that up to your allergist! As to the other antihistamines, as my Dad says:"there are no others that actually work." Is there anything that you are not allergic to food-wise? I know of a boy that can only eat beef, rice and tomatoes. What about rarer foods: lamb, pears, etc. there is a food exclusion diet called rare-foods, mainly lamb and pears, that they use to help diagnose allergies. Just a thought. Good luck!

I have a "hyperdynamic" heart, which means it beats really hard. I also have inappropriate HR response to exercise, which means way too fast. During my cardio stress test it was 180 bpm while walking and they stopped the test. What they did not catch was the after effects of exercise: If I stop, just stop, or slow down too fast, my heart rate will recover (slow) then speed up again and my BP will get really narrow: 87/80, 123/107, 96/74 (today.) I have never had anxiety with mine, just really light headed. Activity also makes the tremor/shakiness worse. I don't know why, but you are not alone.

ditto

Lindajoy, just cry sweetie, if the tears won't cause you hives. You are obviously great at coping if you have for this long and are still with us. Have they attempted to shut down your immune system/allergies with steroids? What do they do to you? Could this be an autoimmune thing instead of an allergic thing? My Dad is a Doctor of pharmacology, and he has told me throughout all my meds that anti-histamines will almost always effect the CNS. That is how they act. Benadryl in particular is active in the CNS, it is an anti-histamine only as a by product of it's action. Allegra is the only anti-histamine with no (or very little) CNS action. Histamine is becoming recognized as a potent neurotransmitter. Have you been checked for systemic mastocytosis? It does not always have the skin component. A new doctor is not a bad thing, a fresh eye can see things better sometimes. Sorry if this is choppy. I wish I could give you a hug. We are here and many of us have shoulders to cry on. Many blessings, prayers and good thoughts your way. Jennifer

Does anyone know any famous people with dysautonomia? I know Greg ?, the yellow Wiggle, left the Wiggles show because of POTS. Could someone contact him for some memorabilia for auction or as a spokesperson?

Found an answer! Not that it helps: http://www.nfra.net/fibromyalgia_rosner_4.htm So convergence insufficiency is common (43%) It's just a pain, no wait that's another symptom. I am so tired of all this.

Just another question: Has anyone noticed that their eyes don't move as much as before? I used to have a very short focal length (could focus on things about 5 inches from my nose.) Since all this began, I can't focus as closely anymore. My husband has watched me try to cross my eyes and says that my left eye does not move inward like the right. My opthamologist says it is "convergence insufficiency," a problem with getting the eyes to converge on an object and usually a childhood disorder. This is also the eye that hurts with my daily headache (same side.) Would ANS problems cause this? I know ANS dysfunction can cause pupil dilation issues, but decreased eye movement? Am I just getting old? Anyone else have this? Jennifer

ajw, Thanks for the input. I do have sinus issues and I know how a sinus infection feels (I've had plenty ) I also have migraines, where the fact of being alive is painful, it's a hypersensitivity that is hard to describe. However, the daily headache I've had for the past two years does not feel like either. The only reason the doctors are calling it a migraine is that it is one sided and light sensitive and activity makes it worse. It has such a specific placement and pattern of pain that it makes me wonder I don't really know who to go to, the headache specialist group was unkind and dismissive, and my neuro says it's part of the "neuropathy." I guess the prospect of coming off of the medication that is controlling it is scaring me. (Tapering off all meds that effect the ANS for Vandy) Jennifer

Hello again, I know that many of us have migraines, myself included, but what about a chronic headache? I KNOW that for me, it is NOT a migraine, it feels different. I have read that one of the many symptoms of POTS, autonomic dysfunction and neuropathies have headache as a symptom. What is yours like? Does anything make it better? Anyone find an cause (structural damage, tumor, low blood flow, etc..)? Do we all have anything absolute in common to describe the headache?

It's not a sinus headache, when I bend over, the pain is in the back of my head near the base of my skull, not in the facial area. I went to a headache clinic and met one of the biggest sphincter-mimic doctors I've ever met. He said that he "believed that I really did have migraines" but that it sounded like anxiety. Then he ordered an MRI, "just to make sure." He never read the other symptoms, said nothing about a BP of 100/80 and spent less than 5 minutes in the room with me. My husband was there with me and was stunned; later he said we basically paid $400 to see a nurse. So far, the Klonopin has helped, but I worry about once I am tapering off of it. What are all of your headaches like? Are they unilateral? Throbbing? Light or sound sensitive?

Hello all, I used to have true menstrual migraines every month: one-sided, throbbing in time with heartbeat, light sensitive, sound sensitive, nausea, hypersensitive skin (pray for death.) For the last six years, since my periods have been increasingly light, I have not had migraines with them; except last year when I had three normal periods and three horrendous migraines. What I do have is a daily, one-sided (same side as migraine,) light-sensitive headache that varies in intensity (from a dull pain up to almost migraine) with activity or position (I don't bend over anymore) and is completely unresponsive to migraine meds. Last October I had an actual migraine and then this headache all in the same day. Two doctors (not neurologists) have said that this headache is a migraine, but if it is, shouldn't it respond to triptans like my menstrual migraines? So far, the only thing that has helped any is Klonopin, and that is becoming less effective at this dose. What is a POTS/ neuropathy headache like? Can you have different types of migraines? The only time it disappeared entirely was when I was clinically overhydrated from the dDAVP (low serum Osm., low serum sodium, but finally a normal hematocrit.) Anyone with more than one disabling headache type? What works for you?

Mary, I was an Air Force wife, please take comfort in the fact that your son will be among the finest people that this nation has to offer. As hard as that life is, he will have the full support of his fellow soldiers and most of their families. Please accept my gratitude to you, and for your son for his service. Please try not to worry ( I have two children, I know it is impossible) as dangerous as the military can be, just living at all can be perilous: I worry every day that my son may have an anaphylactic reaction in the cafeteria at school and die. Keep in touch with him by phone, email, or old-fashioned letters. Support him when he gets down. Take joy in every moment you spend together and try not to worry; you've raised an eagle...let him fly! Jennifer

Still sending positive thoughts and prayers out to you! Check in soon, so that we know you are OK!

My neuro is thinking of doing a nerve biopsy, but he says that just from the symptoms alone it is probably autonomic and peripheral neuropathy. His are the only notes that I don't have, so I don't know that he has "diagnosed" anything. He and all the rest are waiting for Vandy to diagnose me and tell them how to treat me for whatever I have (whatever it is really stinks .) Jennifer

I guess this is for all of you who went to Vanderbilt: do they only diagnose POTS or if there are other ANS symptoms will they dig deeper? I have been having swelling, numbness and tingling in my hands and feet that has gotten progressively worse. I used to think that my hands or feet were asleep from keeping them in funny positions, but now it happens at any time and for no reason. Is this a POTS thing? Will the Docs at Vandy stop once they find POTS (I am pretty sure now that I have had that for most of my life,) or will they continue and attempt to find the cause or extent of the other symptoms. What have been your experiences? Do they look at comorbid conditions (like endocrine issues?) I don't know if I should go back to my neuro with this since he already knows it happens. All my Docs seem to want to wait till Dr. Biaggioni gets a hold of me. What can I expect? Thanks, Jennifer

Sara, If you have a doctor that you DO trust, ask them first. Then move on to friends or coworkers. I have interviewed several docs and been extremely blunt with all of them, if they balk, I walk. Don't be afraid to go to another city, generally, you'll only see your GYN once or twice a year, so the drive is acceptable for a good one. Good luck! Jennifer

Melissa, I had mine taken out when I was 18. It is COMPLETELY different than taking them out as a child. It suddenly becomes major surgery, not just a quick snip and some ice cream. I only had mine out once they were perpetually swollen and were blocking my windpipe when I lay down. I was down and out for two weeks, almost complete bed rest. They did not want me to do too much for fear of bleeding. Think long and hard and talk to your ANS and ENT before you consider getting them taken out.

Do you still have your tonsils? I harbored a strep infection in mine for years and it never showed up till they took them out. Maybe a fall pollen allergy? That would give you the drainage and raw throat. Have you been tested for allergies. I had no idea that I was so highly allergic to ragweed until a couple months ago. I always assumed that the kids brought that first virus home from school and I caught it, every year, same time, same symptoms.

Radha, I would first try the old sinus infection coctail: guifenisen (mucinex) and sudafed (or whatever decongestant you can tolerate.) Once you can move a little bit of mucus, then saline. When I'm talking about saline, it is not a spray, but a liter of the warmest, saltiest water you can stand in a neti pot. It took a long while the first time I did it, and I got some of the worst looking, chunky stuff (sorry ) out of my nose for a month! The problem is that you have to get it clear first to keep it clear. This is the ONLY thing that worked for me and continues to work without drugs or side effects. Good luck! Jennifer