writerlymom

Given the incidence of POTS in women there has to be a hormonal connection... my system went haywire as I entered perimenopause, which seems to be a never-ending phase for me! Paxil has helped me with sleep and regulating blood pressure. I'm tired all the time though and don't have as much motivation, and I think paxil contributes to all that. Hope things turn up for you again soon!

I had terrible weakness everywhere during my worst spells with POTS and I still have periodic weakness. It can feel really scary. Compression socks or hose helped. Hang in there!

I think a higher heart rate is common with a fever but a call to the doc could give you peace of mind. Feel better!

My pulse pressure varies a lot too. I have never paid much attention to that but rather to the beats per minute and blood pressure. For what it's worth I took trazadone once and had the worst POTS symptoms ever.

i've had those issues, have had spells where i can't drive at all because of vision/dizzies/weakness. still can't do highway driving for more than a few minutes, it's like my eyes and brain can't connect. are you getting enough sleep? also i guess dry eyes can be a factor... and anxiety will exacerbate it. i have found that if i can get some light exercise and a rest period i feel better for doing that kind of thing, i think it gets my circulatory system functioning better.

lol, the name of the store was blocked out, i guess the system thinks it's profanity. you can probably get the towel at any sporting goods store.

i've seen people talk about cooling vests... i use a cooling towel sometimes, they sell them at ****'s sporting goods- you get it damp and give it a little shake and it stays cool for hours... i wrap it around my neck at sporting events, etc.

Hi, Marsha- I'm so sorry about what you are going through! I relapsed severely in 2014, at least partly due to stress, after about a year of improvement. Have been back on track since that fall. I haven't been on here much but logged in today after receiving a quarterly newsletter from dinet for the first time... saw your post so just wanted to say there is hope. I totally understand the panic of backsliding and feeling alone. The fact you got better once is a good reason to expect it again. Paxil made a big difference for me in regulating my whacked out nervous system, helped me get my appetite and sleep back. Compression socks/stockings were helpful too. Ugh this condition is the pits! Sending healing thoughts.

Hello and welcome Hope you can find helpful things here. For me it helps to force myself to move around in the morning, despite my body not wanting to. I'm mindful of the same thing statesof said because it seems if I have prolonged periods of overdoing it I seem to pay a price. Prolonged stress takes a toll on me too. A low dose of Paxil has been helpful for me; others have had different experiences. Best wishes to you!

Chuckz I know there are things like Ritalin that people try. For me two things seem to make a difference- getting extra activity, especially light weight lifting, and taking a short nap in the day.

Just wanted to offer encouragement...I didn't get POTS until my late 40s and have had some ups and downs but two years later am doing a good bit better than when I first became ill. It's my understanding that young people generally have the best prognosis. It can be very frightening and overwhelming but if I had any advice I'd say try to avoid the thinking paths that take you to the scariest places. There are lots of resources here and online to help you find the right care. (I saw a naturopath and for me it didn't result in any improvement but others have experienced different things. Good nutrition, rest, and activity as tolerable are always helpful!) Sending good thoughts.

hi, I've been taking midodrine for two years, started at 2.5 mg and now am at 5 mg. the goosebumps and stuff subsided for me in time. i remember feeling cold all the time when i first took it. my POTS has taken some strange turns and i increased midodrine last year when i went into a dive. lately i've been in a good phase and i sort of wonder whether i need the midodrine. but it definitely lowered my heart rate, enabled me to do more, when i started it two years ago.

During severe spells of POTS (I've had two) I had a lot of muscle weakness that no one could explain. It has improved a lot. It's hard to know the right balance but I think it has helped me to try to stay as active as possible.

Hi Addie, you've probably looked into this but I wonder if the clinic that diagnosed you would have any doc names for you? I'd also think about calling the cardiology or neurology departments of hospitals in your region...maybe rheumatology or immunology too? There are some POTS specialists who do phone consults. It'll be a big help to find a doctor who will work with you on it. Hang in there...sounds like you've been pretty tough already!

There's definitely been some kind of supply issue... I'm able to get a scrip filled within a couple of days but the pills are always looking different. Re: splitting them - they're scored and I sometimes just snap them with my fingers. I don't think it matters if they are exactly even.

Hahaha- Bigsky- clean underwear... I've learned a lot but I think the biggest is that I really don't know what's going on in other people's lives. Nobody looking at me or talking with me knows what I'm dealing with unless I tell them. So I figure the reverse is true for the people I encounter. It's made me more gentle.

Paxil has helped me with sleep and excessive sympathetic nervous system activity. It took several weeks to notice any difference. I started at 10 for a few weeks, then 15 for a couple of months, then 20, where I am now.I have the blurry vision and tend to feel more tired on it but it has helped so much with sleep and I think it has helped blood pressure. All of the meds seem to have undesirable side effects... I have decided to stick with being able to sleep. It's my understanding Paxil can be especially hard to discontinue and that has been my experience- whenever I have stepped down or gone off I've ended up wired and my heart rate has increased. I've sometimes wondered for that reason whether something else would have been better, because it almost seems like a dependence. It seems that the antidepressants have quite varying effects with people. Best wishes to you in feeling better!

My doc had me increase Midodrine; she said 2.5 is a tiny dose. I take 5mg three times a day now. That said, I think sometimes there are just episodes that are worse for no obvious reason. Lots of fluid and salt and eating well... If you can force yourself to be upright as much as possible it might help in the long run. Good luck!!

Thank you everyone. Sarah, how have things gone with Cleveland Clinic? Have you found any new helpful therapies? Katie- so sorry about your infections. I definitely think doctor support is crucial. And as Janet and Sarah said all the documentation is important. One of my docs said they want to see that you've tried lots of things, seen lots of specialists- in other words, not applied right after getting sick. Now that things are settling down I'll try to get on the forums more often. This is such a supportive community.

Thank you Corina

Thank you, Katie! How have you been doing?

This is great news, Issie. I remember reading some of your posts when I was browsing last summer. So glad you're feeling good.

Hi, all, I haven't been on the forum in a while- hope you all are doing OK. As present as POTS is all of the time I am trying to not let it be the focus of too much of my thinking. So ... last summer I had a bad relapse after many months of improvement since my diagnosis in early 2013. In August 2014 I decided I should apply for SSD. It took quite a while to get the strength and time to actually do the application, but I submitted it in early October and Social Security has now deposited the back benefits. It made me think of some of you as I know there have been dreadful challenges in getting approval. I still haven't received my official notice but my online account shows that I'm receiving benefits and my lawyer has been paid by Social Security. I don't think anyone - even the lawyers! - really understand how SSD makes decisions but my lawyer told me early that doctor support is crucial. Two of my doctors wrote letters for me and a third had me come in so that she could make sure she was answering the SSD questionnaire accurately. One of the doctors who wrote a letter initially said no, so for me it was worth going back to her with that request. One of the letters explained POTS and its severity with me and the other described its severity as well as examples of the therapies that have been tried. I also think having a lawyer helped a lot. This firm is known in the area for its expertise and success; before I heard about them I had talked on the phone with a paralegal from another firm that was referred to me and she all but said "denied" right off the bat. There were some confusing points through the application process that the legal people guided me through. One thing they stressed was to answer questions in as much detail as possible on the paperwork - don't overstate or understate your symptoms. And... it helped that I turned 50 in the fall. Not that I'm psyched about getting older, but evidently Social Security is easier on people after they reach 50. So! I don't know if it helps to share any of that but I thought I would. I'm doing bit better than I was in the summer. In the summer I was just awful- lost 30 pounds due to no appetite, got crazy weak, heart rate was nuts! Now I can drive very short distances, walk in the store about 15 minutes sometimes, get things done around the house. I feel really weird about the SSD - it makes total sense because in a down spell with POTS I'm almost worthless for months, but I really need to be doing something with my brain. I think when POTS knocks you down a second time it can be extra challenging to climb out. There was so much work and effort the first time around. My primary has put in a request for physical therapy and I guess with SSD out of the way I can try to focus on strength building. I have two kids so part of the challenge with exercise is finding a time when it's OK for me to be wiped out afterward- I always get really weak! Anyhow, thoughts with everyone... I don't know if you have any questions about SSD but if you do I"ll try to help. Stay warm! (We have a wind chill of 13 degrees tonight )

I noticed several years ago my toe moons disappear and I wondered about it - now I think it was POTS but didn't know I had it. I've assumed it had to do with blood pooling.

Sarah- it didn't seem like you were complaining at all. You're pretty amazing!