icesktr189

Does midodrine ever make you feel anxious? I know its not true anxiety because I only feel it when its in my system. I feel like i cant sit still. Almost like I drank tons of caffeine. My bp is relatively normal during this. Also, I crash very badly in between doses, and especially bad after the third dose has wore off. I usually get a pretty bad headache.

Please let me know if you find one here in arizona.... I would LOVE to work with someone who actually has a medical knowledge than just trainer stuff. I know that if I can just build some muscle it will take me a long way, but getting there on your own is something else. I also want to avoid relapses right now from over doing it, so it would have to be someone who wont push. I am going to start looking around too. Ill let you know if i find anything! :]

I really want to start building muscles in my legs. I know it will help with the pooling I have been having, but just dont know how to do it when I can barely walk. Also, my diet is pretty bad. I eat junk because I can do so without gaining weight, but im tired of the crazy IBS problems. I go to the bathroom around 10 times per day. I feel like I eat something and then its out withing 45 mins tops. I think this is why I can eat whatever I want and not gain a pound. I am 5'10 and weigh 123 pounds. I have no muscle on me however. Any advise with gaining muscle and eating healthy but not loosing weight is much appreciated :]

Right now I am keeping everything the same with my medications until I see my rhemetologist and go from there. But he told me when everything is said and done, if my hr is still out of control he would do a pacemaker. ( I can go from 40's to 150's very quickly) I am very new with him, but he is a great listener and takes his time with me, unlike most of my other doctors (UGH wont even get into it with my neurologist). I will update soon. I am seeing him again next week. He just started me on 2.5 mg of midodrine at bedtime to keep me from crashing so bad. So far its been helping and I have not had any hypertension because he decreased my florinef which wasnt doing any good.

I have a new cardiologist at the arrythmeia institute... Dr shukla. Just started with him, but he seems very knowledgable.

Thanks for the replies :] This week has just been one of those weeks were I cant get out of my "funk". I know that having a good day will help me out, but they seem very few now. I think the worst for me is going on my facebook and seeing all my friends who are parents write about how they took their child to the zoo or walk around the mall with them. Then they get home and cook dinner and clean and are still able to go watch a movie with their husband or go out to dinner. I mean I am LUCKY if I get to do one of those things. I am just tired of having to choose instead of being able to do what I want. I know everyone here understands and it helps to talk to those who do, but it just seems so unfair. Looking bad when I was in my teens and younger, I would have never thought that I would have to deal with this as a parent. I just dont want my daughter to miss out on anything because of me. I am slowly learning that asking for help is okay, but i just wonder if people are going to get annoyed or sick of me always asking. I will definitely look into a part time daycare. My daughter is now 12 months and a lot more active, so its been very hard to keep up with her and have her burn off energy when i cant take her out. Thank you all again, it really helps to talk with others in the same situation. None of my friends with kids truley understand when I tell them i am EXHAUSTED. When they say exhausted, its because their child was sick and up all night, when we say we are exhausted, its the bone, tingling tiredness.

Mine is ALL over the place. One minute it will be around 97 then the next I will have a fever of 101. Most of the time my core is VERY hot and my limbs,feet, and hands are ice cold. One time when the paramedics were at my house, the guy kept commenting on how hot my torso was, but how cold my feet were. He had all the other paramedics come feel LOL. I think its all apart of dysautonomia because i never had that problem before.

The funny thing is I came down with POTS when I was at my MOST active. I was running between school and work, hardly sleeping. My echo showed my heart at a normal size too.

in all honestly the ONLY thing that cure my fatigue was chain smoking. Of course its a trade off by having a killer addiction, but i felt the best i have when i smoked. I quit since i had my daughter and the fatigue is horrible right now.

The worse and worse I get, the more I need help with my daughter. Its starting to make me really depressed. I feel like a bad mom because I am not waking up in the mornings with her. My fiance does the morning diapers and feedings and I come around at 11. I feel like I am not pulling my weight. I love waking up and seeing her smiling face and getting her ready for the day, but now i can barely make it by noon. I feel if someone looked in on me that I would be called a lazy parent. I am not able to take her to the park anymore or take her on walks. My father has to do all that. Then to make matters worse, i feel even more worse that my husband works 50 plus hours per week, and has to pick up my slack. This whole situation makes me feel rotten. I cant drive myself to doctors appointments, so I have to depend on everyone else. I feel more like a burden than anything. I wish I could care for my daughter 24/7 without needing the help. Anyone else in this situation?

Is this just for POTS? or is ME/CFS with POTS included. I just wonder if you have EDS OR CFS if it works the same way. I have read somewhere that with ME/CFS and POTS that exercise can actually make it worse in some people. I would LOVE to do this and i generally keep up as much as i can, but i dont want to go back into another huge relapse. I seemed to encounter one when i pushed myself too hard.

That is very true what lina said. I was in remission for a year. I was able to walk around the mall, travel, and even go tanning. I always had to have my afternoon nap, but my life was pretty great compared to what it was before. Unfortunately the pregnancy sent me in a full blown realapse. Hopefully I will get back to where I was.

So would a high ANA mean some other autoimmune problem if its not lupus?

My neurologist did a bunch of blood work and it showed up positive for lupus. He is sending me to a rhemetologist. Has anyone had that come up positive and NOT had it? I really dont know much about it. SOrry so short im on my phone ;]

Mine are the sinus ones. It starts with a sinus headache and turns into a full blown migraine. I think my doctor offered migratan (sp?) but I was reluctant to start it just because of side effects. I have klonopin thank gosh. I didnt know it helped with that!

I have not been on migraine medications, but im starting to have at least 2 a week. They are the really bad ones where i usually vomit and have diarrhea. I really need to get this under control because they are so bad. Does anyone take the exedreine migraine? I worry because it has caffeine and i dont know how I would react to it. Also if anyone has tried the prescription ones. Thank you :]

I was 18 when I had my TTT and got my diagnosis. But I have had symptoms since I was around 6. Of course they were way less severe and disabling. Thankfully i was able to graduate highschool before all this happened. Right now I have constant pre syncope symptoms, brain fog, dizziness/vertigo and EXTREME fatigue. I sleep around 16 hours a day. I really try not to but i just cant find the energy to get up :/

I am very lucky to have a 1 year old girl, but in truth, if she was not an "opsie" i would not have had any children. The pregnancy was very hard on my body and really made my POTS ten times worse. Also taking care of a child everyday is downright exhausting! If it was not for my support system i dont know what i would do. I feel like a bad mom sometimes because i cant go to a park with her or walk around the mall. It stresses me out because one day she is going to have school activities or something come up that i wont be able to do. I dont want her to suffer because i have this illness. It just stinks that i cant really enjoy her like i would if i were not sick all the time.

I have tried both and for me, the antidepressant was much more effective. However if you are looking for just a boost, you should try the 5htp. I have panic attacks and adrenaline surges and it just didn't cut it for me. With both I had side effects but the eventually went away as my body got used to it. Also the antidepressant really helped my autonomic symptoms.

hi claire! I know exactly how you feel. My POTS became unbearable after i gave birth a year ago. Its still an uphill battle everyday compared to how I was before I was pregnant. I used to be able to drive and work part time, and now I can barely sit up. My blood work showed high levels of epstein barr virus AFTER birth. i dont think i had it before. Also, my POTS was horrible during the first trimester, got a lot better during the second, and it was pretty bad again during the third. After birth, it was good for about a month, and slowly declined until i was bed ridden. I hope you find answers and just know that it could change a lot during your pregnancy. Hope you feel better soon and good luck to you and your child :]

WOW i wonder if my bladder is actually being bumped too. I have a MASSIVE bladder. No joke. As a kid i had chronic UTIs, so they did a test where they cathed me and filled my bladder with dye to watch me urinate it out. It took over 2 bags. They said they have never seen anything like it. Same when i was pregnant and my ultrasounds that needed me to have a full bladder. The techs could not believe how huge it was. I was also "potty trained" at 12 months! (I just never had to go pee) No one has looked into this, and i think the pregnancy made things worse with my bladder. Thanks for writing that! It helps to look at different alternatives :]

hi sorry i have not replied.. had a MASSIVE migraine last night that was awful. ugh Thank you dizzy de! i will try those exercises and see if they help. I heard they can make it worse or better depending on the situation. I am going to print out that article and bring it to my neuro and ENT! Maybe they will get their heads out of their behinds and start listening to other alternatives. Thank you again! Lovebug- I would definitely talk to your doctor about it especially if your levels are still really high. I tried them for a couple months and they didnt do too much, but he said it could take YEARS. omg haha that will be my next alternative if my lexapro and LDN dont do the trick. I really would recommend the LDN first because it has a lot less side effects and will help with swelling too.

Seriously the lexapro was a godsend last time for me. I don't know what would have happened to me if I didn't take it. You definitely sound like you have a lot of anxiety with food, which is completely reasonable when you feel so bad. I'm finally starting the lexapro on the 15th. I am afraid of starting any new meds but can't wait to start feeling human again. Just an fyi get a benzo for the first week. Anxiety might up a bit while your body gets used to it. Good luck and know we are all behind you. You will start feeling so much better with that Med.

did the exercises really help? or did they just help the symptom for a bit? I dont want to do the vertigo meds because i am already tired enough and have to watch my daughter everyday. ugh thank you for your help!

i just did a TON of blood work the other day.. so hopefully they will call back soon and let me know. b12 was included in the panel. I would love to get the shots anyways because it helped my moms energy levels so much Lovebug- The LDN is low dose naltrexone. I feel that the epstein barr virus is causing me all these crazy symptoms, including dizziness/vertigo from the CFS/ME. The LDN helps build up your immune system so it can fight it off. This way i hopefully wont be on antivirals for years to come lol. Those are nasty things! zaks27- No i have not which is weird because that is the main symptom i have been complaining about. Where do you go for an audiolodist? I have an ENT and neurologist, but they have not mentioned that. My ENT did mention that next time i see her she would do the exercises. Also read that an antidepressant will help stabilize the inner ear? Thanks again! :]