Katybug

Hi Sue, I couldn't take it b/c I would fall asleep beautifully and then eake up a few hours later from horrific nightmares. I can't remmeber the other big name prescription sleep med, but, that did the same thing to me. It was like my brain was in overdrive while I was sleeping.

Hi Bren, I haven't had it in a while, but when my joint pain and my limbs falling asleep were at their worst 4 years ago, my chin would fall asleep. I never told anyone cause they were already looking at me like I was crazy with the long list of symptoms. I didn't have it expand into my lower jaw but I did have my jaw feel like it was going to lock and the joint was very painful around that time too. It improved with the antibiotic treatment I was on for the Lyme. Hope it goes away, Katie

Steven, I don't know about those meds as I haven't had to take them. But, as far as the distance for Vanderbuilt, I don't know where you live, but there are several autonomic clinics in the US so maybe there is one closer to you. Hope the right meds come your way soon. Katie

Sorry to hear you passed out today. It's NO fun and really scary. I'm more scared afterward than when its happening cause I then have time to think of all the "what ifs". You can do this! Anaphalaxing hit the nail on the head, you are stronger than whatever this thing is. We all are or we wouldn't have bothered to seek each other out. One day at a time. Katie

Hi jnew, Just wanted to welcome you and say that you found a good place to find support. Everyone here is wonderful! Sorry you are having a hard time but at least you now have a dx and that always allows for treatment options. Feel better soon, Katie

I don't know about POTS but I have some hair loss, but , I do know that thyroid issues can cause hair loss and I just finally tested with some abnormalities in my thyroid. Maybe your having some issue with your thyroid levels again?

ok...Day #10...I was good until the evening again...same pattern mild muscle pain in neck and jaw, fluttering in ear drum through out the day then I got the headache this evening. I noticed yesterday and again today that the headache comes when I feel the veins in my neck constrict which is one of my POTS symptoms. I can almost feel the constriction leading the way up my neck to the headache...does that make sense? I also notice I have little spikes in the headache when changing position from laying to sitting to standing. I am really starting to think this has something to do with my blood pooling and how much blood is getting to my brain. I was able to take the dog to the park for a little while today and there were no headache symtpoms while we were on the move but when I stopped I felt awful including the headache symptoms. BTW, I'm 36 and I just changed back to Depo Provera from Nuvaring (but I don't think that's the issue cause the headache started a week after I got the shot. I don't think it would take that long to react to the shot as it makes other things change within 24 hours of injection). The Depo is straight progesterone. I have to be on something that prevents menstruation becuase my POTS goes haywire if I get my period. We use this as a preventative and I do actually feel better on the Depo, in general.

HI dizzyblonde, Sorry that this is another worry on your plate. I was an Ops Mgr before I got sick and worked on these issues all the time. The FMLA law protects your job for 12 weeks of absence (one block or intermittently) in a rolling 12 month period. So, if you have kept documentation on each day/partial day you missed, you should put it together and make sure that you have exceeded the 12 weeks for sure. The rolling twelve month period usually gives a little cushion that people don't realize. Also, if you have it in writing that your direct supervisor agreed to bring you back gradually, you should take anything like that to the meeting as well. In my experience, I can tell you that most HR folks are pretty reasonable and usually want to come to a mutually agreable solution. I do think you should be prepared to express what you are and are not capable of at this point and also be ready to offer alternatives and/or a sample schedule of when you plan on increasing your hrs. (I know your trying to get back to work because I get your issues, but, looking to them like you are doing everything you can and that you have a plan is what's really important.) I hope everything goes ok. I know it's easier said than done, but don't assume the worst...they may just need to understand what's happening to make sure your benefits are administrated properly or that you and your supervisor are doing the right things.

I have never been instructed to put mine in the fridge either.

Day #9...I thought I had escaped the headache but it came back around 6:30 this evening. I could still feel the soreness in my neck and jaw earlier but thought the headache was done...not so much. But today was better and I did take the higher dose of Depakote last night, so maybe a couple more days of the higher dose will work. In the meantime, I will try the alcohol or witch hazel, I have both. I actually had a set of bloodtests last week (actually the same day this headache started) and my iron came back normal. But, thanks for the suggestion. And, as a very POTSy funny sidenote...I have been having a real time trying to regulate my body temp...cold one minute, then having hot flashes. So I have an ice pack on the back of my neck and am using the towel its wrapped in to also wrap around the front of my neck to keep the draft off. I don't think I wouldn't even want to tell a doctor that I need to cool my back side and warm my front. Only someone with this crazy illness could possibly understand!

I totally get your frustration. Hang in there...

Your pituitary is a major player in your endocrine system so an abnormality could very well be affecting your POTS as it could affect both your thyroid or your adrenals ( really any hormone in your body). That being said, I don't know anything about what the MRI results mean. I really hope you feel better soon, Katie

misstraci, Between my original neuro and my POTS neuro they have done the following: MRI and MRA to rule out MS, Parkinson's, aneurism, tumors, other brain and or vascular brain abnormalities Bloodwork to rule in/out autoimmune disease, B12 deficiency, AIDS, celiac, syphillis, tick-borne illness, heavy metal poisoning, thyroid issues, adrenal issues (Cushings/Addisons), ECG (?) to rule out seizure disorders (I think its ECG but they hook electrodes that monitor your brain waves all over your head and do various things like different sounds etc. to see if you have any seizure activity. Easy and painless.) I was sent for sleep studies (nighttime and daytime). After receiving the POTS dx via tilt table test which was run by cardiologist, the POTS specialist ran the following tests specific to dysautonomia: TTT that continuously monitors heart rate and BP (as opposed to standard TTT that takes readings about every 3-5 minutes). Breathing tests to see if different breathing patterns changed my BP or HR. Sweat Test to check for neuropathy. I know I have actually missed some but these are the ones that immediately come to mind.

My POTS symptoms (although we didn't know that's what I had at the time) started getting worse after a year of being on Lexapro every time I took a dose. So we switched to Paxil and that also exacerbated my POTS symptoms. I had to stop taking them. I did not experiece any extra sleepiness though.

Oh, just thought of one more thing...you could buy your bananas reallllly green and only a few that are already ripe so you have bananas for longer periods of time (don't store the ripe ones near the green ones or it will make the green ones ripen much faster.)

Hi lieze, Could you get milk, bread, eggs at the drugstore when you go or a little local 7-11 type place? Much easier and the walk will be short plus you may be able to cut your drive time. I liked misstraci's idea of letting one of the kids run in. If you are getting through a gallon of milk a day, I would think you can buy at least 5 days worth without it going bad. Also, block and sliced cheese (even cream cheese) freezes pretty well (shredded not so much), so that's something you can buy in bulk and freeze in smaller packages. I have also been trying to cook extra of things I make that are freezable, so I can freeze it and have easy to heat and eat dinners in the future...it usually doesn't take any extra effort to make the larger portions and boy its nice to have almost no effort on a night that I don't feel well. Also, could you maybe make a deal with a neighbor or a friend that lives close that you give them cash to get you some milk, eggs, bread once a week when they are going to the store anyway? Hope you are able to get things sorted out...I know you have a lot on your plate. Katie

The computer program that radiohfan suggested is amazing! I just downloaded it in less than 2 mins. and I could actually feel my facial muscles relax as it dimmed/oranged my computer screen because it allowed me to stop squinting.

radiohfan, This is such good info!! I'm the one with the "7th day of migraine" post (now 8 days) and I know that looking at this computer screen is kind of re-stimulating the headache (plus the sleep issues) but I'm soooo bored. I'll totally give this a try! Thanks for the post! Hope you sleep well! Katie

Glad to hear your system seems to be calming down a bit, Steven! That must be a relief. Hope it continues in the right direction!

Cool...thanks for the update, derekliz! Just wanted to check before I added to my issues.

It's a question I have asked in my head many times, friday7. Now that I have a POTS diagnosis, I think I'll ask it out loud. I have all 3 of my docs appts coming up between now and Dec. 5. I'll see if I can get an answer from them about what we can tell medical professionals to help them understand that it is not normal and 99 degrees is an elevated temp for us. I do understand why it is not a concern for most docs...the 100 degrees is the temp at which certain life-sustaining chemical reactions stop and certain harmful chemical reactions begin, so that is one of the concerns with a fever. The big question for me is...how many of these standard measurements are where our POTSy bodies start and stop reacting because I feel like my body reactes opposite of the way a healthy body does. I often have a drop in my temp these days when I get sick with something like the flu. ??? I'll follow up on this link if I get any good answers from the docs.

Today's update: I took the Phenylbarbitol last might and I had two whole hours of peace from all my symptoms. When I was getting ready for bed the headache started to start up again. I was able to take some Tylenol and ice my neck and the back of my head which allowed me to fall asleep. I woke up with the headache again. My POTS/migraine doc's assistant called this morning about something else, so I told her about the headache while she was on the phone. She had the doc call me...he's having me double my nighttime dose of Depakote since I have not had any bad side effects from it. He said to call him later this week if it isn't working. He suspects it is not strictly a migraine. He said he thinks it may have started as a migraine that has now developed into a different type of headache because I was tensing my neck and jaw muscles in response to the migraine pain and that we may have to treat for a different type of headache (my jaw is really hurting me in addition to the earache which he said could actually be muscular.) He is really not wanting to give me steroids because of the things that showed up in my bloodwork. So, I looked up the magnesium options and I'm a little worried about trying them because they actually use magnesium citrate as a treatment to get your gut moving. My gut really doesn't need any encouragement! It leans toward being overactive from POTS. Has anyone that has used the magnesium options had any issues with diarrhea or abdominal issues? Thanks for everyone's input on this. The headache let up for a few hours this afternoon but its back again...day #8!

s-pot, Sorry to hear you are in the hospital. By the strict definition of POTS, you BP does not fluctuate. However, you can have POTS and Neurocardiogenic Syncope at the same time. NCS is another form of dysautonomia and it is not unusual to have both POTS and NCS. Basically your heart racing when you stand up is the POTS and your BP dropping when you stand up is the NCS. NCS can happen at any time so that's why they run standard tilt table tests for a whole 45 minutes as opposed to the "within 10 minute requirement" for POTS. If you go to the dinet.org home page, there is a link in the middle of the page that explains NCS. Have you had a TTT? Hope you get well enough to leave the hospital quickly! Katie

I am right with you all. My old horseback riding coach's daughter, who was only 43, died of cancer earlier this week after surviving brain cancer as a child and another bout in her early 30's. Someone I was speaking to today said they feel sorry for me and I stopped them and said, "Don't feel sorry for me...I woke up this morning and I'll eventually be ok." We have to remember that every day is a new day! Hears to our health and our happiness!! Katie

I'm with you Alyssa. I am really sick of being sick and I am boring myself. I so want to go back to work and back to having a social life. So, my doc said just the opposite...I had no change in BP on my TTT but my HR doubled and he said he was shocked that I didn't pass out especially given how symptomatic I was. I am so over the docs giving out conflicting information because you never know what's accurate. I really feel for you with the asthma. I had it temporarily from a bad case of bronchitis and that was enough for me to last a lifetime...I think that feeling was scarier that my worst POTS. I don't blame you for wanting off any med that makes it worse.