Orthohypo

Hi SaraC628, Looks like you've been reading my personal medical notes! I had the same thing happen a couple weeks ago and have since decreased my Florinef with my doc's okay. I also have OI and normally low BP, though even resting HR can be above 80. Here's what the day looked like, and it was a Sunday so no work pressure: 123/97. HR 144 @10:58 138/100. 127. @ 11:00 116/86. HR 129. 11:02 136/95. HR 126 @ 11:11 145/91 HR 129 @ 11:37 124/91 HR 122 @11:41 133/100 HR 103 @ 11:55 After sitting on stool 16 min: 159/101 HR 100 @12:11 143/100 HR 90 @12:23. Still sitting 146/92. HR 82 after lying with legs up 20 min. 139/94 HR 114@ 4:03 PM 176/108 HR 107@7:52 172/113 HR 118 10:59 Above are standing readings 147/93 HR 84 @11:13 PM lying 10+ Min I didn't take anything that day that would cause high heart rate or BP - no ritalin or midodrine. Only took naproxen and had a Flector patch on. It continued on Monday. Since decreasing the Florinef, I haven't had another day-long episode like that and my nausea and appetite have been better. Not sure why the docs turn to this medication and don't think it causes problems. I think it also increased anxiety for me since it is a steroid it may be adding to the problem created by cortisone in my system from spinal injections for a herniated disc. I'm much older than you (52) but also had an echocardiogram in the last year that was completely normal. I wondered if I was starting to get those hypertension swings others have mentioned on the forum, but it will be interesting to see if it happens again or not since I'm not taking as much and no afternoon dose.

What are the advantages/disadvantages of klonopin vs Ativan? I've had my doc who agreed to let me use a little Ativan (.05-.1 mg) daily express concerns about being on Ativan too long. But if it leaves your system quickly and it can be taken as needed whereas it sounds like klonopin builds up in your system, what is the problem? Is Ativan addictive? Sounds like klonopin creates a dependence...

Also I've tried natural methods for calming my system - accupressure on calming points, deep slow breathing, meditating, reiki, (been doing all one after the other for almost two hours now) and it only helps a little. This is so frustrating!

I get tingling all over and weak spells in the afternoons about 5-7 hours after being awake. If I don't lie down right away, once I finally do, I am immobile for several hours. I can't sleep although I'm exhausted, even if I haven't had a dose of Midodrine or Ritalin in 4-5 hours. I can't figure out if it's what some here call an "autonomic storm" or an anxiety attack or side effects of meds. A low dose (.025 mg or .05 mg) of Ativan helps, but then I think I'm screwing with my body because I take the Ritalin and Midodrine to keep me moving!

Thanks everyone for the words of encouragement and suggestions for books and other helpful things. I will definitely look into them. I do yoga once or twice a week in class and then try to get in some poses in between. I have a great teacher who studies directly under a Kundalini enlightened swami so I feel I'm getting the best of the yoga world! BTW if you all haven't tried Yoga Nidra which is a lying-down guided meditation, I highly recommend it. It is the only time I truly feel free of the physical problems of POTS. The one I use is about 35 minutes long and it goes through breath work as well as body focus awareness. If you're interested it is by Amrit Desai and available online. I am also doing Donna Eden energy work and having energy work done with a psychologist/energy healer. As I said, I'm trying everything! Small, frequent meals because I get full and nauseated so quickly. Had two gluten tests which were negative and don't eat fast food or much meat. lindauerin, I can't work totally from home with this job and I'm not quite sure I want to. On days when I am working at home and alone I feel even more isolated because I start thinking about how I wish I wasn't so controlled by this problem. And on other days when don't have energy, I don't want to be a drag on my family by whining about being home when they have things to do and places to go! I'm used to a stimulating work environment with lots of interaction and even though I'm cutting back so as not too become too stressed, it makes me happy to interact with others. I'm really trying to find balance, but I guess I just haven't acclimated to this idea that some days will be better and some will be worse no matter what I do!

Tried to quote that previous post on my phone but it didn't work. Wanted to say that I have the same indications if its going to be a worse POTS day - waking with nausea and headache usually doesn't get better and becomes a knock-me-down migraine day with severe weakness.

Every week I try to keep my hopes up, trying to be encouraged by you all here who say things can get better. But trying adjustments in meds takes time, hasn't been helping. Waiting to see new doctors takes time. I'm slipping downward. Cardiology tests were all negative. That took two-plus months to complete only to find nothing on that end. In the meanwhile I can barely get 5 hours out of a day. I am struggling to get to work and manage staying on task and vertical while I'm there. I sit as much as possible, avoid stairs so I don't get dizzy. I'm wearing compression garments from toes to boobs! Taking in 5 salt tablets, lots of fluids - trying to do all the things that forum members and online recommendations say. I'm pushing my doctor to be more agressive with my treatment - she's empathic but I have to drive the protocol. I spend 12+ hours in bed, try to work at home as much as possible, but my quality of life has degraded so much I don't feel I'm part of the rest of the world anymore. I read about those of you who have been on disability and some have service dogs, wheelchairs, etc. Last night I came home from work thinkin ince again that I was getting the flu. I went to bed and laid there literally not moving for two hours. I couldn't even get up when I heard my daughter and her boyfriend come home with excitement in her voice about a house they want to buy. My students have the flu and colds and I thought, I have to force myself to function feeling like that every day. I read about those here who are on disEvery week I try to keep my hopes up, trying to be encouraged by you all here who say things can get better. But trying adjustments in meds takes time, hasn't been helping. Waiting to see new doctors takes time. I'm slipping downward. Cardiology tests were all negative. That took two-plus months to complete only to find nothing on that end. In the meanwhile I can barely get 5 hours out of a day. I am struggling to get to work and manage staying on task and vertical while I'm there. I sit as much as possible, avoid stairs so I don't get dizzy. I'm wasting compression garments from toes to boobs! Taking in 5 salt tablets, lots of fluids - trying to do all the things that forum members and online recommendations say. I'm pushing my doctor to be more agressive with my treatment - she's empathic but I have to drive the protocol. I spend 12+ hours in bed, try to work at home as much as possible, but my quality of life has degraded so much I don't feel I'm part of the rest of the world anymore. Last night I came home from work thinking once again that I was getting the flu. I went to bed and laid there literally not moving for two hours. I couldn't even get up when I heard my daughter and her boyfriend come home with excitement in her voice about a house they want to buy. My students have the flu and colds and I thought, I have to force myself to function feeling like that every day. I read about those here who are on disability, in wheelchairs or have service dogs to help when passing out - honest to God I don't know how you do it so I don't want to complain. But I worry that I'm on my way to that point. What else can I do when I'm already headed down that slippery slope and I have to keep waiting as my life becomes so much less?

Boy that's a bad situation Dani. Maybe you could offer to take them once you are moved and feeling up to it. (I can't even imagine trying to move with our problems!) I had a friend who is a really nice guy tell me "I think you just like all the attention you get from doctors." Now what do you say to that?

Thanks everyone - all good info. I did some thinking and decided that since homeopathic remedies work so well for me, especially after surgeries, that I should try it for nerve pain. Tried arnica over the past few days and it helped somewhat. Then I read that hypericum was indicted for neuralgia so I'm going to use that during the day as I reduced the neurontin dose at night. Shall we even begin a discussion about the potential aggravation of anxiety by cortisone injections?! I suspect that the cortisone in my system is making m anxiety worse. But then it could be the Midodrine and Ritalin and florinef, right? Sheesh.

Kris4444, thanks for the explanation about NE testing. What type of docs order these tests? It sounds like something that would have to be done at an autonomic testing department, but the cardiologist I saw didn't order this test.

Yes! I never mentioned it to a doc since its only happened a few times and my bigger concerns were feeling miserable all the time and not being able to make it through the day. All my heart tests were negative for problems, so I don't see a cardiologist (he released me back to my GP) so if you learn anything from your cardiologist will you let me know? I think it might have been occurring back when I was on a low dose of Wellbutrin. Have you tried Ativan to help with sleep? Also ear plugs. I can't sleep with my husband in the bed so maybe that could be a factor for some of you - just the disturbances that come from sharing a room & bed. Also folks, how do they test the NE levels? I am having to direct my own testing and ask for med trials because no one is making recommendations. The doctors have all just seemed to be saying I'm doing what I should be and I just have to live with it. Nevermind that I might not be able to keep my job! I take Florinef, neurontin for nerve pain, synthroid, cytomel, salt, gobs of supplements.

Good to know! I get socked with those issues about 4-5 hours after getting up. I have to lie down and it sometimes wipes me out for the day. I'm a bit afraid of going without the nerve pain relief but I have to find out if it's causing the problem so I'm starting to reduce my dosage.

Hi, I'm wondering if anyone has had problems with neurontin causing vasodilatation? I have been taking it for nerve pain from herniated cervical disc and with an increase in dosage my attacks of weakness, aching legs and headaches seem to be worse. Vasodilatation is listed as one side effect as is peripheral edema. I can only take it at night since it makes me off balance and tired. Docs wanted me to take it three times a day but can't do it! I'm wondering if it also causes increased anxiety - like when decreasing the dose too fast. I read somewhere that not keeping it in your system consistently can be like withdrawing daily. I'm only taking 500 mg nightly.

Dr. Svetlana (can't recall her last name) in the documentary by DINET on YouTube said meds for us sometimes have to be at pediatric doses.

What neck problem do you have? Just wondering since I've seen others post here about neck issues. I have a herniated c5-6 disc and others that are bulging + stenosis and "mild" arthritis in the vertebrae. How long did you have to wait to see Dr. Grubb?

Jen, could you tell me what neuro there did for you and your diagnosis if you don't mind sharing? I went in through CC cardiology, had a bunch of tests over 7 week period and nothing was wrong with my heart, QSART, blood volume. I am so tired of going to docs I haven't made any appointments with neuro. I passed out on tilt table test at UH a couple years ago and am definitely getting worse even though my family doc has me on the usual meds. I've asked her to try mestinon sine Midodrine isn't helping much. But I'd like to tell Wishing and Hoping that their testing staff was very good.

Yes, I have those same issues with the bodily reactions. The problem is whether I am better with or without the meds! I can't get through a day without Ritalin, but then it can give me rushes and when I really need to rest during the day it won't let me. Valtrex attacks my gut and I can't take it in the recommended massive first dose then decreasing doses so I do it to what I can tolerate. My doctor acknowledges the sensitivity to meds. So maybe what we need is a brochure for our docs who don't know about dysautonomia. Something based on what Dr. Rowe presents on the YouTube video since it's in their lingo.