nmorgen

I know this is an old post, but I wanted to add that systemic enzymes(not plant based) can help with inflamation. They use them in Europe for pain and inflamation.

Thanks for all of the responses. I did sleep a little better last night. Not back to normal, but at least better. I did have a wicked nose bleed today though. I don't recall ever having a nosebleed. Maybe just another new symptom to add to my ever increasing POTs list. I'm ready for a "I feel normal" period.

My body doesn't really feel hyper,lol, I am so tired. It's my brain. My mind just is constantly going and I can't seem to focus or concentrate. The startled waking has been happening several times each night. When I've had them before my pulse or bp were always elevated. My pulse the last couple of nights with this waking have been fairly low in the 60 and my bp in the 105-100/60-70 range. I've noticed that my pulse today has been fairly low no going above 100 and my bp has been a little higher than I like. I'm wondering if my pulse might be dropping too low while I'm asleep. I'm def not taking the magnesium for a few days. I wish I had a hrm on hand.

Hi Lieze, My surges feel pretty similar. I feel really tingly. I get hypertension with mine and I get the nausea, headache and shakes. Did you check your blood pressure during the episode?Since your not on any medicine I would try to lie down and relax or at least try to recline and relax. I hope you find a dr to help you.

Hi Thoughtful, I have noticed that this year I have also gotten bradycardia and high bp. Did your drs seem to know why this was happening to you?

Hi Todd, What type of dr should I go to for mitochondrial causes of POTs? What type of disorders should be looked for?

Hi, For the last 3 days I haven't been feeling very well. I can't sleep. I keep waking up with a falling sensation or startled reaction. I haven't done that in years. I usually slepp so deep it's hard for me to wake up. My bp and hr are fine everytime I check them. In fact my pulse has been surprisingly low. I just feel really shakey and not right. I'm having muscle tremors, maybe this is what is causing this? I'm having a hard time concentrating and my emotions feel off. Like I just don't care about anything or anybody. I try to get on FB or the internet and I just feel too wired to read anything or respond. Has anyone else experienced anything like this? I'm just not feeling good and I'm nervous b/c my husband will be out of town tomorrow. I didn't even remember that he was leaving until he reminded me last night. I would just be happy to go back to my normal POTs self, at least I know how to deal with that. Oh, I did do some weight training 2 days ago. I ended up very sore. Could this be causing my horrible symptoms?

I can't help with your search for a doctor, but I went to Mayo and they never told me what subtype of POTs I had. My insurance also covered most of the doctors, but not all of the tests and it was expensive to cover the rest $3,000 . I couldn't imagine having to pay everything out of pocket.

I get this same thing when my bp is high. Have you checked your bp while standing with these episodes? I usually sit down and take more medicine and try to hydrate myself. It's funny TXPOTS, but they also thought I had a csf leak.

Glad you found a doc! When I lived in the States I went to UAB to find a cardio who would help me.

Hi, I just wanted to let you know that I get the same thing. Sometimes I can go periods without this happening and then wham it's back. I started getting them again about 1 1/2 months ago. I have tried doing strength training this week and I feel like jelly, but my shaking continued for at least 30 min after I stopped. It makes me feel horrible. I'm taking magnesium, but it hasn't been helping too much this time. I wish there was a cure b/c this is the worst POTs system I have, well at least it feels the worst to me. Good luck, and if you find anything that helps please let me know.

Hi, I just wanted to add that I add severe abdominal pain when I was diagnosed with celiac. I hope you feel better.

CONGRATULATIONS! I am so happy for you!

The disorder is porphyria. An easy test is to pee in a clear container and put it in the sun. It was covered on a Medical Mysteries show. The doctor put the patients urine in the sun and it changed colors. Not saying that you have this condition.

This is Dr. Grubbs recommendations for hyperadrenergic POTs if that is what you end up diagnosed with: In the hyperadrenergic form of POTS, patients often respond best to agents that block norepinephrine or its effects. One agent that is particularly helpful is clonidine HCI in either pill or patch form. We start the oral form at 0.1 mg PO 1 to 2 times a day and filtrate upward. The patch form of clonidine is quite useful because it provides a constant and continuous amount of the drug for up to 1 week at a time. The combined and β blocking drugs labetalol and carvedilol are quite useful in some patients as pure β-blockers may exacerbate symptoms (because of unopposed receptor stimulation). Methyldopa has been reported to be useful in some patients, as has phenobarbital. In addition, both the SSRIs and norepinephrine reuptake inhibitors are useful in select patients.

I'm the same way. When my heart rate gets low I feel terrible. When I feel bad I crave chocolate. It's funny b/c I don't particularly like chocolate all that much. Maybe I should try the Nesquick instead of the chocolate next time.

Hi, I have the hyperadrenergic POTs and I also have the labile blood pressure. I am also on catapres/clonidine. It calms everything down for me. I take it everynight at the same time, but I also take it when I am very symptomatic. When my blood pressure rises my pulse pressure narrows signifigantly. Of course my normal pulse pressure is pretty low anyway. The clonidine has really helped this problem, which makes me feel a lot better. If you don't have pheochromocytoma I would push to be put on the clonidine as I believe it is one of the first meds tried for the Hyper POTs which is probably what you would have with the standing hypertension. I would definitely try to get an appointment with someone who knows about dysautonomia. If your in the States there are quite a few places to go around the country. Good luck and I hope you get some help.

I hope the new medicine helps.

Thanks for all the information guys. It didn't seem to matter what position I was in b/c I moved my legs another way and the otherside did the same thing. My skin did feel really hot to the touch. It was really weird. I put cold water on them and sat in front of a fan. When they cooled down the splotches went away. I have had something similar happen this winter when we went sledding, but it was my arms and it wasn't as violent as this. My arms just looked kind of mottled. This was bright red and stark white splotches. Whiter than my normal skin color. I'm making an appointment to see the rheumy dr who speaks English. I don't know if the rash is related so maybe I should make an appt with a dermo too. I have had the rash on my face since my first pregnancy almost 11 years ago. It doesn't ever go away, but sometimes it isn't inflamed just red. I can tell that I have blood vessels at the surface, and I think they are causing the red coloring. I do sometimes get flushing like my face is on fire. I really wish it was just the main POTs problems and not all of this other stuff too. When these things spring up it gets a little depressing to me. Just one more thing to try and figure out. Why won't my body just work like it's suppose to?!?

Hi Blue, Wow, I am so sorry about your problems. Have you asked you GYN if you can use lanolin. I know it's thick but you could thin it possibly with Vit E oil and it has a greasy kind of consistency. It might work for a quicky if you know what I mean. Maybe they will come up with something soon for everyone suffering from salicylate problems.

Does the rash on your face go beneath your eyes and over your nose, like these images show? If so it is called a malar rash and is one of the things rheumatologists look for in dx lupus. My rheumy dx'd my which is another condition that can happen with lupus or can indicate antiphosolipid syndrome, also known as Hughes Syndrome. Take pictures and make an appointment with a rheumatologist. Auto-immune stuff will not cooperate with our MDs schedule and the rash won't necessarily be there to show the doc. The rash doesn't go over my nose. Sometimes it's just red and other times it swells and is raised and itchy. My previous dermatologist tested me for lupus, but the test was negative. He couldn't figure out what it was. At one time my finger tips would get really scaley and crack. Thankfully that hasn't happened in the past year. I'll see if I can find a rheumatologist around here that speaks English. I think I will go back outside tomorrow and see if my legs have the same reaction. I will take pics of my legs and my face. Maybe someone will be able to figure out what is going on.

Thanks so much. That is what it looks like. I have often wondered if I had dermatomyositis as I have a horrible red rash on my face. This seems to be something that I need to look into. What type of dr is recommended for diagnosis of any of these disorders? A rheumatologist or dermatologist?

Okay, so to day I sat out on the balcony to let my legs get a little sun so I don't look like a ghost in shorts. After about 10 min I noticed that my legs had turned red with white blotches everywhere. I have never had this happen. I tried searching for it on the internet, but they all came up with a fungal infection and the loss of pigment. Mine looked nothing like either of those. My legs were really hot feeling and it looked like blood pooling at the top of my skin in weird patterns. It went away after about 15 min, but this is really weird. Has anyone else had something like this happen? Any ideas on what is going on? I hope this doesn't mean I can't go in the sun at all anymore. FYI I have a medium to dark olive complexion, not fair. Thanks to anyone that can give me ideas on what is going on. It freaked me out.

I'll try to respond to everyones general comments. I want to thank everyone who has commented. I will definitely take the exercising at a slow pace until I can build up to 30-45 min, if that's even possible. Like all of you I seriously doubt this will cure my POTs, but I'm hoping it helps and if not at least my body will look better,lol. I'm not sure that this dr knows that much about POTs at all. He kept refering to it as neuro degenerative, but I don't think that it is. I have looked on for a POTs/dysautonomic dr in Switzerland and there aren't any. Going back to the States for a dr appt just isn't feasible. The guy does speak English, which the language barrier has been to toughest thing for me. I speak very little French, and def not enough to talk about medical problems. I do a little exercise now, but mainly yoga type floor work. I don't mind adding a little more exercise, but it will be what I can handle, which right now isn't that much. It is really hot now and the air conditioner we bought just doesn't work. So exercising will have to wait until it gets cooler here. My dr in the States put me on clonidine. He didn't know if it was available in Switzerland so he gave me an 18 mos supply on top of the medicine I already had. Clonidine was the first medicine that I tried for POts and it does help me. I was never bed ridden with my POts so I never got that deconditioned. I only saw him twice after being diagnosed, but he didn't want to add any other medicines as the clonidine was working. He did tell me that I could take a little more if I was feeling symptomatic. He never told me that I needed to exercise any more than I did already. Oh the new cardiologist told me that he hadn't prescribed clonidine in about 20 yrs, but he was willing to write a prescription if I needed it. I would like to try the weight work,but I will have to see if I can find the equipment over here. Does anyone know of any strengthening exercises that don't require a weight bench? Wow! I have the P90X I bought for my husband and that is really intensive, it makes me tired just to watch it, lol.