juliegee

Jess, You sound just like my son. He is generally very nauseous in the AM, but can eat pretty well at night. It sounds like you may have GI motility problems- Have you checked into that? My son takes .2mg of florinef daily. One in the AM & one in the PM. Any chance you could split your dose to keep a high level in your system consistently? Because Mack has motility problems, he also takes eyrthromycin (as a prokinetic), Nexium (for GERD- regurgitation) and zofran for nausea. The combo of these GI drugs help him keep the florinef down. Are you taking anything to help with the severe nausea? Best of Luck to YOU. Julie

Hi Ta Anna- My 13 year old son takes florinef (another name for the same drug) and it's been a godsend. He does have to supplement with 8mg potassium. He was very lightheaded before he was on this drug. It has changed his life 100%. Always follow your doctors directions, but I want to give you some tips for starting with florinef in children. These tips come from Dr. Peter Rowe at Johns Hopkins. He suggests starting with a 1/4 of a .1mg tablet. Try that for a week and then add an additional 1/4 tablet until you work up to a therapeutic dosage. Florinef has the ability to cause a debiliating headache if you take too high of a dose. A therapeutic dose is one that improves symptoms and doesn't cause a headache. (.2mg is the maximum Dr. Rowe would give to a child.) My son has worked up to .1mg in the AM and .1mg in the PM. The tablets are hard, but not impossible to cut. Once again, check with your doctor before trying this, but it was very helpful for my child. I hope you find a more supportive GP. Best of luck. Julie

Kim- My son also has dysautonomia and it has severely impacted his cognitive functioning. He was so sick that he missed most of school last year. (He was in 7th grade.) I homeschooled him. As soon as we would begin covering a somewhat difficult concept- Algebra was particularly bad, he would have to lie down. He would start to faint. I was so frustrated that we sometimes did school upside down. We hung our heads off of the sofa in the study- with our feet propped on the wall! Now that he's DXed and on a good treatment plan, his cognitive problems are sooooo much better. He was actually DXed with dyslexia while ill. As soon as he began taking the right combo of drugs, he read "Call of the Wild" in a day and a half. For Mack lots of extra fluids, 6 Thermotabs, .2mg florinef and 10mg of Lexapro daily did the trick. My guess is that you need to start treating your POTS more aggressively and your cognitive fog will disapate. Talk to your doctor. Best of luck! Julie

Hi Shannon- How frightening! And yes, it happened to me after anasthesia. I woke up in the recovery room with all kinds of alarms going off and doctors and nurses shouting at me to breath or they would intubate me. I replied, "All you had to do was ask." Once I was awake, I breathed fine. One time occurence. Perhaps it won't happen for you again. I hope so. If it does happen again, definately go for a sleep study. Best of luck. Julie

Hi All- I noticed a few of you have Mastocytosis. I was wondering what your symptoms were and how you went about getting DXed. I get "hives" that really don't behave like hives. They act more like little tiny flea or mosquito bites- but they aren't. Zyrtec and Singular help somewhat, but are barely controlling the unbelievable itching. These bumps sometimes grow quite large and act like boils. (They don't go away like wheals.) These hive symptoms seem to preceed autonomic problems. Does anyone else have anything like this? Thanks in advance for your help. Julie

My son also has an orthostatic intolerance and gastroparesis and is dependent on zofran. We have UHC and he is entitled to 21 8mg pills a month. My son needs 2 a day to attend school. His motility specialist has him cut the pill in half (4mg) and often that works. We didn't think it would as 8mg barely helped at times, but 4mg seems to have the same effect. You may want to try that. We have an appeal for more zofran pending. We have been outsourced to an independent abitrator and are awaiting results. Do appeal. It can work. Also, my son got a prescription for Kytril (almost as good as zo') and UHC allows him 14 a month without an appeal. the combination of zofran (cut in half) and kytril is getting him through while we wait on our appeal. Keep in mind, you can have concurrent prescriptions for anti-nausea meds at the same time. Get your zo, kytril, marinol, etc.. Hopefully, you will find a combination that works and is affordable. Hugs- Julie

Hey All- A few years ago, I got horrible hives. Some were like large boils that stayed around for weeks. These hives seem to preceed other symptoms, like tachycardia and anaphalaxis. The hives are back. I'm scared. My allergist put me on zyrtec and singulair. He says that hives are closely related to autonomic problems. Anyone else have hives? Julie

Congratulations on making it through your first REAL day, with the kids there. I pray each day gets easier for you. Coming off steroids make everything seem so much harder.... Hang in there & thank you for being here for us. Hugs- Julie

Hey Bri- I definately get the chest tightening. I feel tightness or a touch of pain when I breathe in- only occasionally. Singulair (of all things) gives me good relief. Julie

The term for the "room spinning" is vertigo and supposedly not related to POTS. I had an attack of vertigo about 25 years ago and it was awful. I fell to the ground and had to crawl- couldn't walk. Google "vertigo" and see what you can find. I think it is a problem if the inner ear. It often comes with a virus and then goes away. I hope you feel better soon. Julie

Hi There, Years ago, when I was in my mid 20's, I was also having really severe pain in my uper abdomen and middle of my back. My GI also decided that it was sphincter of oddi dysfunction. I had the ERCP and went on to get full blown pancreatitis- very, very severe. It was pretty horrible, however I don't remember much. I was hooked up to a portable pain pump and I was pretty out of it. I was hospitalized for over a week, didn't eat at all during that time, and slowly recovered. It ended up that I didn't have sphincter of oddi dysfunction, but a large ulcer instead. I know this info isn't too helpful, but I just wanted to share my experience. I've heard of many people who go on to get pancreatitis following the procedure. Many more than GI's report. Please let me know if you have any further questions. Julie

My 13 y/o son definately has this! He doesn't have POTS, but another orthestatic intolerance- NMH and CFS. It's such a pain when we try to do a car trip .

Mine didn't act like normal hives. It never itched. Pretty sure it wasn't herpes, (Can you get that in your armpits?) but that's an interesting theory. I'm gonna look into your idea. Julie

((((((Sonotech))))))))) Big Hugs from Julie

Good point about circulation. Even with the correct volume it's not circulating properly. I'm learning For the record, it wasn't Dr. Rowe who made that comment. (He is the tops!) A cadiologist named Brinker used the coke bottle anology. Julie

Hi Maggee- Thanks for your reply. No, no estrogen here- yet. I'm sucha newbie, I haven't figured out how to write my DX, meds, Gratefully, Julie Wow, Melissa- When I saw weird skin stuff under your list of DX's, I wondered. Were any of the big erruptions in your arm pits? Most of mine were. One was on my forearm. Mine are gone now too and, thankfully, my autonomic issues are not bad right now. Let's hope they don't come back for either of us. Julie

When my son was DXed at Johns Hopkins; the cardiologist there said that everyone with an orthostatic intolerance has low blood volume. He said that we are like coke bottles that are half full. We feel better when we lie down because "Coke" can finally get to our brains. I've also read it's like we are bleeding all of the time and no one can find the leak. That's why we are supposed to stay extra hydrated and takes extra salt, etc. to increase overall fluid volume in the body. Julie

Hi All, a few years ago, when all of my autonomic symptoms were really severe, I had some weird skin erruptions that almost seemed to preceed my other symtoms (tachycardia, difficulty urinating and burning pain on the bottom of my feet.) These skin erruptions started as small bumps on my skin. Some stayed small, while others grew to almost an inch in diameter. They were like boils or large pimples, extremely painful. They lasted a week or so and then magically deflated. They were on my trunk, arms and legs. The worst and most painful of them was in my armpits. I saw an allergist, who treated them as uticaria, with 3 different antihistamines. At the same time, I also develped chest tightness, etc. In retrospect, I don't think they were hives because they were relatively isolated and lasted for so long. Has anyone else ever had any sort of problem like this? Thanks in advance. Julie

I take Singulair occasionally. It really eases up my chest tightness. I've never had a problem with it. Sorry it isn't working for you Julie

Hi Jess, I'm actually glad you asked this question. I, too have had major problems with my esophagus (scarring, spasms, GERD) and other GI dysmotility. And I have horrible Reynaud's. I was actually hospitalized for 3 days this past winter because one of my fingers turned dark purple/black and wouldn't pink up. There has to be some link between POTS, Reynauds, & GI tract problems. Probably an autonomic neuropathy. I'm curious to hear others experiences. Julie

Hi Dayna- I've stopped BB's cold turkey several times and never had any problems. Julie

Yes, that happened to me , too. My doc put me on verapamil this winter for severe Reynaud's. Almost immediately upon taking the pill, I got tachcardia. What happens is your BP is already low. The beta blocker lowers it further and the tachy is your heart's way of keeping your blood circulated throughout your body. Tachycardia was actually listed as a side effect of verapamil. I got the lowest possible dosage and keep it with me only in case of emergency. Best of luck. Julie

Hi Gillian- No, you are not alone. I am also very fatigued after doing simple things. There is a strong correlation between orthostatic intolerance, like POTS, and chronic fatigue syndrome and fibromyalgia. My son is DXed with CFS. Check out the symptoms. I bet you qualify, too. It doesn't change much- just a different name for the whole syndrome. Julie

Hi Maria- I do know how you feel. My POTS is pretty well controlled, but I had a period almost a year ago when I got severe tachy (180-200) for no reason throughout the day. I was very anxious. I took water and meds with me where ever I went and I planned out constantly what I would do if an attack came at that moment. It almost made me agoraphobic. Medically, my son's doctor at Johns Hopkins gave us a reason for this anxiety phenomenon. His name is Dr. Peter Rowe and he treats adolescents with orthostatic intolerance. (My laid-back, skateboarder son also developed anxiety with this illness!) Dr. Rowe says that your body recognizes a drop in BP or an increase in HR even before it happens and inappropriately shoots out adrenalin to counteract this psyiology. He was so sweet. He wanted to make sure that my son didn't feel that he was emotionally weak because he had developed anxiety. I want to make sure you know that, too. Julie

Thanks for the welcome- Melissa & everyone! It's been nice to see several smiling faces from the GP site. I appreciate all of the advice! Julie