nmorgen

Hi, I also suffer from this. I have to sleep at least 12 hours to function. Right now I am going through insomnia.

Hi, I was wondering if anyone had some good tips on cleaning your house. Today, I cleaned up the dinning room, but after sweeping the floor I got very dizzy and potsy. I also tried cleaning the living room, but I am having to take a break as my symptoms are just getting too bad. It's funny b/c I can walk for fairly long distances, but as soon as I try to sweep and pick stuff up I get really bad. My mother gave me the idea to sweep everything in a pile and then pick everything up from the pile so I'm not bending over continuously. The problem is the sweeping seems to be making the POTs worse. I just need some ideas on an easy way to clean, b/c everything is starting to get a little out of control for me not being able to clean up a little everyday. Between doing laundry, cooking and cleaning the kitchen I just don't have the energy to clean anything else. I don't want to ask my husband to help b/c he is the only one working and he works all of the time. I do have a 10 yr old boy. Does anyone have suggestions for tasks he might be able to help me with? Thanks for any advice anyone can offer.

I'll be praying for you and your family Maxine. I hope you all get better soon.

Hi, I was wondering if anyone else has experienced insomnia. Monday night I couldn't sleep at all, and last night I didn't sleep until about 2:00 am. It's weird b/c I usually am so tired that I sleep for 10 -12 hours everynight. I haven't been sleeping well the last 2 weeks, but this is the first time I just haven't been able to sleep at all. Sunday night I slept for 4 hours. I'm just wondering what could be going on.

Actually you have the Mayo clinic in jacksonville. That would be your best bet on getting help. They do have a dysautonomic specialist there. I would give them a call and see if they can help you. Good luck.

http://www.amazon.com/Flexi-Freeze-Ice-Ves...ref=pd_sbs_sg_1 You could give this a try. They also sell additional ice replacement panels for $20. At $80 and free shipping it's the cheapest cooling vest that I have seen.

Hi Maxine, Sorry to hear you're having such a bad time. I know the narrow pulse pressure makes me feel completely horrible. I also sometimes get the weird spine buzzing/vibration/tremor feeling from mid spine into my neck. It usually causes me to have horrible migraine headaches. I know they can cause phantom smells. I sometimes smell something similar to paint thinner. I also sometimes get the visual impression that there is smoke in the room. I've never been able to get any explanation or help. If you find out anything please post it, as I have similar problems and would really like to find out what this is or what is causing it. Maybe you can find some answers. Good luck and I hope you feel better.

Hi, I guess I'm like most of you. I have short periods(hours - few days) where I might feel normal. Surprisingly most of those times seem to be when we are on vacation. Maybe it's b/c I really try to ignore all of my symptoms and have a good time. Most days I find it a struggle to just do regular everyday housework. If I cook dinner and clean up the dishes I feel I have accomplished something, lol. I am hoping and praying I could have months where I actually felt normal. I like the potshole analogy also. I've been stuck in a potshle for the last month, arghh. I can't wait to climb out of it.

Hi, Thanks for all of the advice. I did try another typer of water last night. I went back to my Evian again today, because the other waters have fluoride. I haven't felt that nausea today, so maybe I just had a bug or something. I have been feeling bad the last week. It's not easy to find Gatorade here or any of the the fruit drinks.

For the last few days I have had a real problem drinking enough water. I would say I've only been able to drink about a liter a day, which is not good. I just can't seem to be able to drik the water. I get really nauseated and stay nauseated after drinking even a small amt of water. Has anyone else had this happen? I don't want to get dehydrated, but the water is causing me major problems. FYI I drink Evian bottled water.

Wow! I had the same thing happen when I was taking Cipro. I called the dr office and they told me it wasn't a side effect. I told the nurse that I had just read it was a side effect. Everyone is right, most drs are oblivious to side effects or allergic reactions. I've had so many reactions to medicine that I just find it hard to take any. Good luck and I hope it reverses and you start to recover.

If you think it's a bladder infection you need to call your internist/gp and see if they can do a urine test. If you don't have one or they wont let you come in and do the urine test try a walk-in clinic. Bladder infections can get bad really quick, and the last thing you need is it turning into a kidney infection. I had that last year and ki+POTs= really being bad off for over a month.

Definitely take you TTT and all tests they used for your diagnosis. I am going to give you my experience, maybe someone else will have different experiences. Dr's not used to dealing with POTs, especially the cardios wont listen to your other symptoms. They will tell you to go and see someone else, that isn't their specialty. I've had a cardio look at me like I was crazy when I started telling him all of my symptoms. Hopefully your cardio will have some experience. If not be prepared for strange looks if you start mentioning various symptoms. At this point, I just stop talking and know that it's time to look for someone else.

Me three. I'm not sure they are actually being caused by laying down, but we are probably noticing them more b/c we are still and quiet.

I have the same adrenalin surges during the day occasionally. I also have the throat swelling feeling most of the time. I don't seem to tolerate benadryl very well. It's like I lose function of my legs and find it hard to walk around after taking it. I'm glad that you found some relief.

Clonidine is the only thing I have been on since my diagnosis. It has calmed a lot of things down for me. It took my body 3 weeks to adjust to the medicine and not fall asleep constantly. Good luck.

Hi Lieze, I would definitely call your gyno in the morning. I wouldn't take anything as it could actually be a yeast infection from all the anti bacterial medicine. That areas yeast/bacteria balance tends to get thrown out of wack pretty easily.

It sounds like it could be an allergic reaction to me also. You may just be feeling it more in the morning b/c you haven't been exposed to an allergens while your sleeping and your stomach is empty. Monitor yourself after you eat those same foods later in the day and see if you aren't having some kind of reactions. You might not feel as bad b/c you have other food digesting at the time, but you might still be having a reaction.

Hi Shan, I would definitely get a copy of your medical records to take to your new cardiologist. I would also make a copy to keep for your own records. Does your new cardiologist have experience with POTs? My advice is to see someone who is experienced with POTs, even if you are just looking for a second opinion. If they aren't familiar with it you won't be getting an informed opinion. I know it can be overwhelming and a little disheartening to get that diagnosis, but the sooner you start trying to treat it the better you will start to feel. I have a lot more good days then I had before, and my bad days aren't as bad as they used to be.

Hi, I just wanted to add my experience with MAYO. As far as records I don't think that I would take anything that suggested psychological issues. I was lucky and my neuro actually thought I had POTs from doing a poor man's ttt. I had current brain MRIs done, but they didn't want them on disc, they wanted the actual MRI films so that their doc could interpret themselves. I would make sure they will accept the CD or if you need to have the actual films. They do like to do their own tests and have their own people look at things. I wasn't scheduled for any tests until I got there and then it was just bouncing from one dr to the next and test after test. They did give me an estimate on the time it would take, but I ended up having to go twice as they couldn't get everything done in the first week. All of the drs I saw were very caring and they spend a lot of time with you, not the standard 15-20 min. I was very relieved going to MAYO as I felt they were really trying to help me. Unfortunately I moved out of the country before I was able to see the specialists for treatment after I had all of my diagnosises(is that a word? lol). Good luck and I hope you are able to get some answers and help.

Hi, I had the QSART done at MAYO and they said that I had small nerve neuropathy, but they didn't give any suggestions for treatment. I do have to say that I was suppose to see the dysautonmic specialist, but then moved out of the country. I get these weird electic pulses through my body and sometimes a burning sensation. Do you think this could be from that? Should I take my MAYO records to a doc over here and look at getting treatment for it? As far as the test itself, it wasn't that bad, but it felt like I was being burned the whole time.

Hi, I have very similar symptoms. I get the internal shaking, which is very disconcerting for me. I also get the weird electrical shocks. I have to say that mine don't go away in a few minutes. Mine seem to last and last and last... The internal shaking has lasted for days. I also get the burning almost stabbing feeling in my chest, but it doesn't radiate through my body. The most it does is move into my arm or my toes. I also get fluctuating bp and occasionally bradycardia. You are definitiely not alone. I have been diagnosed with small nerve neuropathy. I think that might account for the electric shock and maybe the burning sensation. The only medication I am taking is clonidine. It has helped keep me from dangerous bp and pulse spikes, but it hasn't really helped with any of these particular symptoms.

I've never heard that before. I know here in Europe enzymes seem to be very popular. They also have a lot of alternative health docs here, which are covered by insurance. Maybe that is why the enzymes are recommended for inflammation. Some people believe that the cooked foods already put us at an enzymatic deficiency as the natural enzymes in food are destroyed with heat.

Where I lived in the States there were several sleep clinics. Some run by neurologists and others run by pulmonologists. I'm sure that is probably pretty typical. Just do a search on the internet or look in your local phone book. They usually don't require a referral, if your GP isn't willing to give you one. It is worth looking into. I had a sleep study 2 yrs ago and mine was so mild that I didn't have to get a CPAP.

You can have the vascular EDs without hypermobility. I'm not sure about the other types of Eds. You really don't want the vascular Eds though. Very poor prognosis.