Faintinggoat

Welcome to the forum! Wishing you well wishes on your POTS journey!

@medicgirl, I never thought about the detachable shower head, that's a really good idea

Yeah, like hope said, this is pretty typical. I'm like medicgirl, I have to sit in the shower, and have to do lukewarm water as well since I've developed the POTS. My specialist told me that I couldn't shower, or take a bath when I saw him the first time. I asked him what I was suppose to do and he explained to me that when syncope is a symptom if you're standing there is too great a risk of falling in the shower, and too great a risk of drowning in the bath. Comforting first appointment lol.

I'm like Psalms, I wear the compression hose and the abdominal binder. The binder also helps me a lot with eating as well. My specialist did tell me what Psalms was saying, that it is better to put it on before you get out of bed and taking it off after I have laid down in bed for the evening. He also told me that the thigh high ones are more effective than the knee high ones (though to me they are significantly more uncomfortable).

Yeah I definitely get this basically anything from actually working out to just doing the stairs to my apartment (stairs are the worst!) If I don't feel bad immediately after, I generally do start to get dizzy after about 10-15 minutes. I don't really have an exercise plan but reconditioning is suppose to be really good for people with POTS, so I think maybe it might not be a bad idea to keep trying in small amounts.

I am happy to hear that you found something that helps you! Best wishes,

Fainting Goat

Hopefully soon your body will realize it can finally sleep! Best wishes again tonight!

I cant say that this is something that I've experienced, but wanted to just drop a comment and say I hope that you are able to get a good night sleep tonight!!

Well Wishes,

Fainting Goat

I think that this is one that varies from person to person. I did not have a spinal tap, thank god. But have had structural MRIs of neck/spine and brain with and without contrast, as well as CT scans and mine were fairly normal.

Hey Rosey,

I also wanted to say I'm sorry its a bad day for, as well! I hope that you feel better soon!

Fainting Goat

thnaks everyone for the well wishes. not really feeling any better today, going to get a hold of dr tomorrow. I am kind of discouraged that the Coreg isn't helping

Also, to go on what Hope said, churches will sometimes have people that do stuff like that as well if your insurances doesn't cover something like that.

Sarah,

Thanks for the warm wishes. I normally have both pre-syncope and syncopal episodes, but I'm not normally pre-syncopal all day long, and usually only faint 3-4 times a week. So twice in one day is scary. I have not called my doctor yet, as she is not one of the physicians in the clinic on the weekends, but will be in touch with her tomorrow about this.

Megan

This is a really good, and relevant question to many people I believe. I know that I have struggled with isolation the past few months. Social media, and pets help to some extent, but it just isn't quite the same as having quality time with friends. I have a few friends who are willing to come visit me at my place, and just hang out watching TV, playing games, etc. Is there anyone in your life that you wouldn't mind asking to come over and hang out with you? I know that this can be hard. I know sometimes with me it's hard for me to ask someone to come visit because I feel bad that I can't do a lot of things with them. Other times, I feel very lonely but just don't feel up to asking someone to visit (sometimes that feels like it's more exhausting then going out and doing something), but that also perpetuates that feeling of loneliness.

Lots of love,

Fainting Goat

not doing well today. I'm not sure if it's the coreg causing it (I've been on it for about a week, so its likely starting to kick in), or not. I have been so exhausted, fainted twice today, was apparently unconscious longer than usual both times, had longer recovery times, and have been apparently presyncopal (spacey) most of the day. Well wishes are much appreciated.

Fainting Goat

I think this is pretty common unfortunately. A lot of big places like Cleveland, and Mayo know that a lot of people come to them from out of town. It was explained to me that because of that, they like to schedule all the testing as close together as possible. Its nice financially, but when your sick, its super hard to go through that much testing without being allowed to eat or drink. The last time I was in Cleveland, I was there from 8-4 and wasn't allowed to eat or drink (other than to take my medicine). Hope that things work out well for you!

Fainting Goat

Yeah periods definitely have an effect on POTS. As Naomi mentioned, you can search google for information on POTS and Mestruation. This is also something that I have seen posted on the forum before:

http://forums.dinet.org/index.php?/topic/24507-ladies/?hl=period#entry229141

http://forums.dinet.org/index.php?/topic/24474-advice-from-women-please/?hl=period

Fainting Goat

Like Corina, I just wanted to say that I hope that this med helps you a lot! I, also, have not been on the medicine, but best wishes!

Fainting Goat

Thanks for the response. I hope that it helps me, or that we find something that does help soon. Will keep updated.

Hey Sarah

thanks! I have no idea if its helping or not. I feel kinda weird, but its not anything different from what I have felt with the POTS, so I'm not sure if its the meds or the POTS making me feel weird.

Fainting Goat

I'm sure there has been a post on this before, but My doctor prescribed Coreg for me today, to help with the Tachycardia. Has anyone else taken coreg before, or is anyone else on it now? How did it work for you? My BP isn't bad, but she still warned me that it could bring my BP down too much.

Fainting Goat

Yup, I get that way too. When you eat, it takes blood to digest, which requires your heart to pump blood there. The larger the meals, the more blood it takes to digest.

I also live in PA, and it has been quite dreary here! I don't know if weather impacts POTS or not.

Mine has been consistently bad since I started having symptoms about 15 months ago, so I personally have not really noticed a huge difference when I am on my period, however, I have heard frequently that hormone levels can impact POTS -- that seems to be supported by the fact that more women than men have POTS. So it could quite possibly be related to your period. Have you noticed a increase in your symptoms previously around the time you were suppose to start your period?

Hope you feel better soon!

Welcome Krys! I hope that you can find support from people on here. I think a lot of people who have POTS/OH, etc. tend to get at least one doctor who doesn't understand what's going on and automatically jumps to the conclusion that it must just be psychosomatic, anxiety, etc. I agree that finding a good Dysautnomia doctor could be pretty helpful for you!

Best,

Fainting Goat

Hello Kham,

These points have already been suggested in comments, however, I get really low pressure in the morning as well. Generally when I wake up I go through that whole routine of slowly moving from laying to sitting, and sitting to standing. I generally start the morning with Gatorade, (both for the fluid and for the sodium). I am also on sodium tabs that I take in the morning to raise my BP. I was also told to wear thigh high compression stockings all the time, an abdominal binder, and raise the head of my bed 6 inches. The only thing annoying about compression stockings is that they can be quite pricey (I get Juzo) and that they need to be washed daily to help maintain the compression longer. Though I still have symptoms, these things have helped to decrease some of the symptoms and raise my BP. Hope this helps!

Fainting Goat