icesktr189

Im just out of luck right now because Im on Medicaid from not being able to work. They are really stingy with doing "experimental tests" in the first place. The only reason they agreed to it to begin with is because i was 9 months pregnant and they were worried if I had vascular EDS that i could die during birth. But now they have said they are not sure, i doubt they will do it again :[ Ugh I really hope my medicare will come through someday. Still waiting on judges decision on whether I get approved for disability or not. My age (21) is making it really hard for me to get a fast approval.

Hi sorry! This started during the last couple months when i was pregnant. My gums are swollen all the time and they bleed when i brush my teeth. I get crazy big bruises even though I dont bump anything. My legs also ache a lot. I am not anemic right now ( just had a blood test) I was checked for EDS and they said it was pretty inconclusive. I do have hyper mobility in my hands and my legs and arms go pretty far back. Also have a high palate in my mouth, but was not able to bend my arms down to my legs ( i was however 35 weeks pregnant when they did this test lol) They kind of blew me off after that saying I was fine.

Oh just wanted to add a had a very succesful epidural beacuse my doctor really listened to me. I LOADED up on Iv fluids and compression stalkings.

I quit all my medications when I found out I was pregnant. This included midodrine, florinet, and metroprolol. I am however not a "passer outter". I have on occasion and come VERY close to syncope, but never really do. You have to out weight the risks. I decided i would just put up with POTS symptoms, unless they started affecting baby. THe good part of pregnancy is that it expands your blood volume, so she might not need them or as much. I also quit smoking, which really helped with my fatigue and POTS symptoms. Some anti depressants are safe in pregnancy, and they can really help out POTS symptoms. Maybe should could look into that ? good luck, i know how stressful it is to deal with POTS, let alone taking care of another life inside our messed up bodies!

That is awesome news!! So happy for you! Are they going to do a couple more echos still?? Did you find out anything more about the dystolic disfunction? Let us know more when you find out! :]

oh also wanted to add my gums bleed like crazy. I brush/floss regularly and they still bleed. I have yet to go to a dentist because my insurance is messed up at the time. any ideas of both?

I have that also, but it came from having POTS.

I too have dumping syndrome. Even water too fast can make me feel that way. Honestly I don't do anything different, I just eat and know the symptoms will pass in around twenty mins. I usually eat my food lying down so I don't feel as dizzy. Do you have a lot of BMs a day?sorry tmi but once the food enters me IRS pretty much out in one hour I have no problem keeping weight off either. I don't think my body really processes it. I am also bloated all the time. Ithink I have had this pre pots because my Mon would get so upset everytime at dinner I would have to use the bathroom right after I started eating. They asked me on numerous occasions if I was bulemic. It does worry me because my mom and uncle had ulverative colitis

I too have dumping syndrome. Even water too fast can make me feel that way. Honestly I don't do anything different, I just eat and know the symptoms will pass in around twenty mins. I usually eat my food lying down so I don't feel as dizzy. Do you have a lot of BMs a day?sorry tmi but once the food enters me IRS pretty much out in one hour I have no problem keeping weight off either. I don't think my body really processes it. I am also bloated all the time. Ithink I have had this pre pots because my Mon would get so upset everytime at dinner I would have to use the bathroom right after I started eating. They asked me on numerous occasions if I was bulemic. It does worry me because my mom and uncle had ulverative colitis

i definelty know what you mean about the sugars problem. I CRAVE sugar so bad sometimes. I will eat a cookie or cake right upon waking daily. I have checked my levels and the were a bit off, but not enough where a doctor was shocked about them. The klonopin helped slow my ANS system down. During occasions, if i took it, i could go see a movie without adrenaline surges or go to a restaurant and eat without worrying about my bp constantly. The problem is that anxiety disorders can over lap POTS. I mean shoot, who wouldnt have a bit of anxiety if they felt the way we do everyday of our lives. Its true that with hyper POTS (i have it) that anxiety is much more common problem. For some its just the POTS attacks, but I have Panic disorder on top. When i started worrying about taking new medications to the point i wouldnt take them anymore and not leaving my house, i knew it was something else. Dont get me wrong, even with antidepressants and klonopin i still have POTS, but its much more easy to manage when I am not panicking 24/7. Have you had your blood sugars tested? That could defeintly lead to some of the symptoms you experience. Protein does wonders for me sometimes. I hope you feel better soon and best of luck :]

It felt like it was too strong and didn't last long enough. The klonopin just felt a lot better and lasted all day However the lexapro took over after two weeks and I was able to completely get off the klonipin Let me know how it goes if you decide to try it

I couldn't handle Xanax. Klonopin was the only one that worked great. I would start at. 25 mg

Have you tried klonopin?? If not it could help you tons. Hope you feel better soon I'm in the same mess right now too.

My moms PICC line lasted over a year! Her secret was once a week using these patches that go over the site that has some type of medication to prevent infection. Also if you can get the portable IV bags so you can hook yourself up and not be tied down to an IV. However its a big pain in the butt to take showers and it has to be changed out weekly Good luck! The problem with IVs are that they are not meant for a long term solution your veins will eventually give out.

Everyday I wake up with new bruises on my legs. I don't really move around and don't bump into things too often since I am usually confined to the couch. Today I woke up with pretty bad leg pain and this red lemon sized bruise on my leg. I have always put off them because I assumed that having blood constantly pooled in my legs would make me bruise easier. Now my legs are achy everyday. My mother told me that it could be a blood disorder and I should get it checked out. I don't want to sound like a hypochondriac though. Anyone else experience this? Its mostly confined to my legs, but I tend to bruise easily on my arms too. I don't have a lot of fat or muscle, im mainly skin and bones if that helps LOL

I agree with firewatcher. After three weeks you should notice improvements. Maybe you should up your dose? I too noticedd my dizziness dissapeared within an hour of taking it

Sorry I didn't mean to assume that everyone was addicted to it. in my experience it was terrible to get off of. I only took it for three months at. 5 mugs. I had night sweats, shaking, and hullicinations. It also doesn't help that my father is a 20 plus year drug addict to medications. I have seen first hand how medications can destroy lives. I totally understand that if klonopin can make your quality of life better than itsworth it, but you need to know the side effects

Go to askapatient.com..there are tons of reviews of klonopin. You have to out weighthe pros and cons. It is however VERY addicting but I know how horrible dizziness is. Good luck!

I know what you mean. The withdrawal from this drug is supposed to be the worst. The FDA is actually supposed to be issuing a black box warning for it. The big problem is that everyone eventually hits tolerance. Ugh Thanks for the replies! I have taken. 5 in the past but this time I will take. 25

My daughter is 11 months old and I have had POTS for three years. She was definitely not planned

Hi! Thank you for replying I'm using celexa to help with POTS symptoms. Have you had any improvements? Lexapro was a God send for me in the past. So you didn't have any additional dizziness or worsening of symptoms? I am praying it is much easier to get on then the other stuff was. I had crazy adrenaline surges for the first month. Than you again! I'm happy its working for you

I have this really weird symptom where if I go to a movie in a theatre, my eyes take forever to focus. It feels like one pupil dialates and one does not. When I left the theatre tonight, it took another hour for my eyes to adjust. Just trying to find out what this is it never happened pre POTS. It also happens with different lighting. Like one eye is too sharp.

Mine are accompanied with panic symptoms (flight or fight response) this is the reason I am getting on celexa and konopin next week. It evens all these symptoms out for me and makes me more tolerable to meds

I am getting on celexa and the first couple weeks I will have panic attacks until I get used to the Med. I will only take as needed. Last time I took it only 6 times in 5 months. Thanks for the replies.I will take half a pill. Injustice don't want to be stoned out and I don't let my body grow tolerant by only taking it randomly.I knw the withdrawal is like going to **** and back.

I have taken it before at. 5mg but I was so spaced out and don't remember some days. If you take it what mg and how long did/do you take it for? I will only be on it for a couple weeks