Broken_Shell

Endure, Curious - what drug caused your dysautonomia? ~ Broken_Shell

Hi Endure, I also have a long list of "bizzare" symptoms... I don't even know how to describe some of the things I feel without sounding like a crazy person... Anyways, my thoughts are that when your basic systems are autonomically out-of-whack, then pretty much any symptom goes. I think sometimes that we feel different symptoms because all of our bodies react differently, even if we have the same sorts of blood flow or autonomic neuro-regulation problems going on. Here is what I can relate with from your post... #1. Not my head, but I go through periods where I keep waking at night with one foot painfully freezing cold. #2. My hands and feet are usually either purple, bordering on black and freezing or lobster red and burning hot, especially when my other symptoms are flared up. #4. Absolutely! My body (not I) over-reacts to everything. #6. I have a lot of muscular and fascial issues with my neck and jaw. #7. Yes - everything can shift from one extreme to another or one symptom to another within minutes and there is no rhyme or reason or way to help it. Thank you for sharing. ~ Broken_Shell

this is how i feel when my gi system is reved up and moving too fast like it is right now. i dont have a good explanation other than guessing that it has to do with blood shunting and different neurotransmitters and hormones related with gi motility. it must just be that the stimulation and increased motility of the gi tract causes reductions in bp and these symptoms regardless of what is causing the speed up. i hope you can find a good combo that helps you and your body function best. curious, how was your sb dysmotility diagnosed?

hi all, i am back to having a bowel flare - too many bms, bad hypoglycemia episodes, feeling very light-headed, weak, cold sweats, etc... i haven't had much success with imodium or probiotics. has anyone ever tried pepto bismol? any good or bad resposes you can share? thank you! ~ broken shell

Hi Joy, Welcome to the forum. I am sorry to hear about what you have been through. I don't have RSD per say (I have a pain syndrome that somewhat resembles RSD, but hasn't been officially diagnosed as such), but I do have multi-system dysautonomia. However, my mom developed RSD about 1.5 years ago. She never had any autonomic type symptoms before that, but since developing RSD, she has developed some of the symptoms I have, although less severe. I think that they are related because RSD results from peripheral autonomic dysfunction. I hope that you continue to recover after your illness. Do you have a good doctor to treat the dysautonomia and RSD? I know that there are usually specific pain management doctors or neurologists that specialize in treating RSD. Best wishes! ~ Broken_Shell

I don't have personal experience, but klonopin can make you gradually more drowsy and sedated overall regardless of the time of day you are taking it. I hope you can find a better combo of meds. Dizzy and drowsy are not a good mix! ~ Broken_Shell

Hi Linda, Short answer - yes! Anything that gets my bowels moving over-stimulates my whole system and increases all of my symptoms - shaky, cold sweats, tremors, light-headedness, wooziness, headache, etc. I feel the best when I am constipated. With the Miralax - I took it for several years because I had a complete stop of my colon and was laxative dependent. I usually could only handle 1/6 to 1/2 of the suggested 17 gram dose. ~ Broken_Shell

The story of so many of our lives... at least those of us here can understand how true that statement is Maybe someday we will all get an answer... if not in this life, then in the next. Enjoy your trip!

I don't know about BCPs causing dysautonomia, but the body's response to the high doses of hormones could certainely exacerbate or mimic symptoms. I also had a lot of anxiety and odd symptoms that I never had before when I started Ortho Tri Cyclen Lo. I felt like I wanted to climb the walls, and I felt much more like myself when I stopped it. I've tried several hormone variations, and it seems that the high doses of BC just don't agree with my body. On the other hand, hormone fluctations and periods make my dysautonomia worse, so I am still working with the OB/GYN to find a way to either shut off my cycles or make them more tolerable through hormone manipulation.

Hi Erika, I wish I could say something to help, but you are in my thoughts and prayers. Are you applying for disability through your work or the government? I know it is hard, but try to find that strength to trust in God and just believe that somehow it will work out. Hugs, Hugs, Hugs! ~ Broken_Shell

How swollen is it? Is the whole thing swollen? It is red at all? I have one foot that swells up and gets somewhat painful if I wear certain shoes that cross over the top of my foot. I some a doctor about it, and it turns out that I have an inflammed nerve on the top of this foot. I hope it is nothing serious!

Prayers for answers and strength! Let us know how it goes!

I've felt the same way because I have had tests that completely throw me for a loop with a several day or longer recovery. Maybe talk to the MD's office and let them know your concerns. Tell them if you are also concerned that the results won't be as helpful if they are collected when you are having a "good period". Sometimes it better to "leave well enough alone." ~ Broken_Shell

Nikki, Have you been tested by an ENG through an ear, nose, and throat doctor? It might be worth looking into if you haven't. They test for dizziness associated with movement of the head and eyes in addition to things related to the ears. ~ Broken_Shell

Hi Nikki, I have the same thing. It is nearly constant, but the intensity waxes and wanes. I wish I could offer you some advice, but I do understand. Mine also seems to be correlated with headaches and a tight feeling in my neck, head, shoulder muscles. I have heard that benzos can sometimes help, but I have no personal experience with them. Meclizine made me more sleepy and woozy. I hope you can find some relief... if not, I have a life vest ready for you on my boat if you want to swim on over! Ha ha. ~ Broken_Shell

Linda, I have very extreme reactive hypoglycemia. My sugar drops into the 40's and 50's when I eat. I have seen several endocrinologists with no explanation other than that it is somehow related to dysautonomia. I also have very rapid drops (down from 90's to 60's in less than 10 minutes), I am very symptomatic with only neuroglycopenic symptoms - not usual adrenergic ones, and the rate and timing of the drops varies from day to day even though I eat the same diet. I eat 6-8 times a day. I have been found to have rapid stomach emptying, and the drops can be somewhat correlated with bowel movements. I am sorry that I have too much arm pain to type more, but I haven't seen many blood sugar posts on the forum, so I was interested to read what you experience. Do you have a glucose meter? Do you eat small meals and avoid simple sugars? Have you seen an endocrinologist? I hope you find a better answer and solution than I have. ~ Broken_Shell

Wow - I could have written this... "Yes, I most definitely see a connection. When my neck flares, my autonomic stuff and hypoglycemia are at their worst." The physical therapist I see feels they are all related. There are so many nerves that pass through the neck muscles. I wish I could explain why this connection exists, especially to my doctors!

Same here... I have a lot of neck, head, and jaw muscle pain. This winter I can't even wear earmuffs or a hat!

Hi rene, i have too much arm pain to type, but do a search because i know we have talked about this before. i have been getting craniosacral and upledger therapy for about 2.5 years. i sent someone a pm about it before too. let me know if you want me to forward it to you... i won't be able to edit it, so i don't know if it'd be helpful or not. maybe try looking at upledger.com too. hugs, shell

Hi Julie, I really struggle with hypoglycemia the same as your son... eating drives my sugar into the 40's and 50's... I am symptomatic. No endocrinologist has any idea what is wrong with me, but they all agree it is abnormal. They always think that I am fasting, but in fact I have recently eaten and my fasting glucose is in the 70's. I have "severe reactive hypoglycemia and an unknown automatic dysregulation of blood glucose." Wish I could be of more help, but interesting to hear of this in someone else! ~ Broken_Shell

Hi, I have both a handicap tag and a wheelchair. I got a prescription for the wheelchair from my doctor. I use them on the days I need to and leave them at home on the days I don't. ~ Broken_Shell

Hi, My pain doctor suggested it to me as an option to consider. I have never tried it though... let us know how it goes! What brand and dose are you taking? ~ Broken_Shell

Hi, I did not have any meds for my TTT. I was upright for about 10 minutes, experienced some wooziness and nausea, and was then put back down. It usually takes me 24 hours to recover from any sort of testing I have done. I have also wondered why many people on the forum describe a more in-depth test. I had the test done at both Froedtert in Milwaukee and Mayo Clinic in MN. I hope that helps... and good luck! ~ Broken_Shell

Hi Michelle, Welcome to the forum... and nice name by the way It sounds as though you may have dysautonomia. I developed dysautonomia following a "mono-like viral illness." To answer a few of your questions... POTS refers only to heart rate changes with standing and does not require a drop in BP. Orthostatic hypotension would describe a drop in BP, but may people can have POTS without having orthostatic hypotension. Since dysautonomia is the body's inability to properly regulate autonomic functions, you would not have to have the heart rate changes the entire time you are standing. Dysautonomia can certainely affect bowel and bladder function... have you had a gastric emptying or bowel motility study? After developing this condition I had a 2 year period where I had no spontaneous bowel movements and was enema dependent. Now I have too many BMs. The manifestations of dysautonomia can change over time, but they still represent inappropriate regulation of autonomic functions. I also know many of us women have had menstrual changes associated with the onset of our symptoms. However, my advice to you would be to see several specialists and have a very thorough work-up before accepting a diagnosis of dysautonomia/POTS to make sure that they are not missing something else that is easily treatable. You may also want to browse the forum archives and read past posts. Best wishes and keep us posted. ~ Broken_Shell (Michelle)

Hi Ericka, Welcome to the forum! I am sorry for your suffering, but I hope that those of us with dysautonomia will be able to help provide you with support and guidance. Have you scheduled with the cardiologist yet? You may want to call his office and make sure that he is familiar with dysautonomia and POTS. Being in Tennessee, perhaps Vanderbuilt would be an option for you. Please find strength and hope in the Bible verse at the end of all my posts! ~ Broken_Shell