RobinB

I have low bp. Standing mine is about 70/40 and sitting 110/70. I still feel symptomatic unless I can get it to about 120/80. I think it's different for everyone.

I get like this too. The more I sleep the harder it is to get out of bed. Dizziness and heart rate are much worse.

Welcome! You are not the only one! It takes awhile to accept our limitations. I'm still working on that one myself. I only have one child so I can't imagine having 4. My son is learning to do a lot more things for himself. He also takes pride in having a chore list and I constantly tell him how I proud I am of him which I think makes it easier for both of us. I'm not medicated so I can't comment on that. I might drink one gatorade a day but mostly just water. Lots of water. For salt if I'm desperate I will literally eat potato chips and pour salt all over them. My friends think I'm crazy when they see me do that! But it helps quickly. I also have pretzels around all the time. The recumbent bike has been the best way for me to get exercise. I can do it sitting down to help keep some of the symptoms at bay. Start off slow and take breaks if you need them.

It was the catecholamine test. It broke down into 3 parts.

All the symptoms you mentioned. Did you feel better when you're level was higher. I read it can be caused by nutritional deficiencies as well. My vitamin levels are always at the low end of normal. I'll update when I hear from the Dr.

Thanks! I had all of them tested. The others were normal. The Dr hasn't called me back. I did some searching and found that dopamine deficiency can cause low blood pressure! That is my biggest problem ATM. I do have all

So I finally got lab results from an appointment last week. Had to call the lab myself since the doc hasn't called me back. The only thing that stood out to me was a note that said my dopamine level could not be reported because it was below normal range which is less than 10. This was a blood test sitting upright. Anytime I've been low in something previously, a result is available with a flag of low. This is confusing me because that's not the case. I emailed the Dr but I don't expect to hear back. I'm a worrier so does anyone know what this means or what piece of the puzzle this might be? Thanks! Robin

Rob- I'm curious what you found?!

States- did you do something to get rid of it?

I feel the exact same way sometimes. Not always but I would describe it just like you did minus the hard heart beat. I have low pressure though. I have found that if I lay on my side it eases the sensation a bit. I wish I knew what it was. I have just put it down to anxiety. Its probably not but if I tell myself that it helps me not to worry about it as much.

Thanks. I was talking to my friend at work and I had her do some of the things the doctor did and she can do them too. I'm starting to think this doctor was trying to pin a cause to make me feel better. I'll definitely look into more testing though. It seems like the stress from trauma and illness brings POTS out. Also my main symptom is orthostatic hypotention. The fast heart rate comes and goes. Still waiting for my tests results!

Katy- thank you. I will check out the doctor. What confuses me is that my dysautonomia presented a few months after giving birth. I don't know the cause but I question how I could have eds as a cause and not be sick until that point. I can also walk on the outsides of my feet! Can't everyone do that?! Jk. I guess it makes sense I was just really hoping my cause would be something treatable and that I could put this nightmare behind me. Thanks for the info. One more question- is hyper mobility always a form of EDS or is it possible to just have that and it not be? I hope that question makes sense...

Thanks for your reply! She had it written as "joint hyper mobility syndrome" but I agree that I don't think she is qualified to give me that diagnosis. Prior to her observation I had ruled it out myself because I can't relate to much that I have read about. Now I will probably look for a Dr with this specialty. And around and around we go....

So I went to see a new doc yesterday after finally being diagnosed at the end of last year. I went to this doc because they were recommended to me as someone who has a lot of knowlege on dysautonomia and can look for a cause for it. The visit was long and a lot of blood work was taken as well as as EKG and rythm strip. Unfortunately none of those results have come back yet. After spending some time with me and examining me she informed me that I have joint hypermobility. She proceeded to tell me that these two often go hand in hand and it's not clear yet the reason for it. I have seen several posts from others with EDS and I'm assuming this is what she was implying. When I left she gave me a copy of my chart and it had a diagnosis of joint hypermobility. I'm crushed. My joints don't bother me nor do I have any paid unless I stand for a long time I might have knee and ankle pain. She said if another cause cannot be found through my lab tests that she is confident that this is why I have POTS and OH. I'm devastated because from what I read it looks like POTS will not go into remission if it's related to EDS. I'm also very worried for my son should he inherit this from me. I have my doubts that these other tests will reveal anything since many of them have been done before my POTS diagnosis with negative results. Any advice? Should I pursue an official diagnosis for EDS? Is there any hope of the POTS getting better even with this other disease present? I just feel like I came out it with a life sentence....the only thing giving me hope thus far has been my faith that I would find my cause and my hope that it would be treatable. Hugs to all Robin

I would suggest making the appointment as soon as possible. I went undiagnosed for almost 5 years. Many times I felt hopeless and thought it was all anxiety etc but then I finally decided to keep pushing to get answers and I'm so glad I did! Fight for yourself because you deserve answers and help. You can also check the physicians list on this site and see if there is someone in your area you could see sooner. I'm sorry about your job situation. I'm lucky that I have a desk job or I wouldn't be working at all. Still everyday is a struggle. I really hope you get the answera you need!

Thanks for sharing what helped you! It gives me hope!

I was just diagnosed last December but I've been unwell for about 5 years. It started gradually after my son was born. The past year it has gotten way worse. I tried a paleo type diet for about 3 days and then gave up because I felt worse, but afterwards I read it was probably like a withdrawal reaction. Please let me know if gluten free helps you. I have read other threads here and some people say it helps. I also have a wheat allergy and the Dr told me it was mild and just to cut back?! Well that's hard to do so I just ignore that lol but maybe there is something to it. I also have a poor diet so I can totally relate. Eating healthy takes energy that we just don't have

We are definitely strong people! How long have you been dealing with this? I'm looking into ways to decrease my stress but its difficult for sure. What type of healthy eating are you trying? A specific diet? I've thought about that as well but I really can't find any diet recommendations other than high salt etc.

Hi there! I can relate to you on the medication thing. I'm terrified of meds because I usually react very strongly to even small doses. I was also prescribed a beta blocker and I was told it would lower my blood pressure. My blood pressure is already so low why would I want to do that?! So for now I am treating with lots of fluids and salt. It doesn't seem to make a difference for me. I'm sorry I can't offer any help but I just wanted to let you know that you are not alone. This disease is scary and can make you feel so isolated. I too have often wished that I could switch bodies with someone just so they could see how it feels. After 10 minutes they would never doubt us again! I also have symptoms laying, sitting, standing. It doesn't matter I'm always lightheaded and shaky. Laying is definitely preffered, but it's like we are trapped in these bodies that don't work right! So frustrating! Have you had a good work up for potential underlying causes? Wishing you the best. Robin

Thank you both! I will do that!

Hi All, I'm hoping someone can offer a suggestion of what to do next. I have been unwell for about 5 years and have seen several gps and specialists. I got my diagnosis on 12/24/15 by a cardiologist after a follow up from the Er where I was diagnosed with OH. The cardiologist confirmed OH and POTS by a poor mans test. I have not seen my gp since October. I had seen him every 3/4 months with vague symptoms which he would run basic blood work (normal) and tell me I should really get my anxiety under control! Thanks to the suggestion of another member here I am scheduled to see a good dr in Chicago on 2/16. What I'm wondering is if it would be worth letting my gp know about this diagnosis and seeing if he wants to/can run tests for underlying causes in the meantime. I feel that he needs to be made aware of it regardless as he probably still thinks I'm a nutcase. Also it would be beneficial if he has other patients presenting as I have and maybe he could recognize it so they get better care. My symptoms have been especially awful these last few months and I know deep down that there is something causing all this. What would you do if you were me? I appreciate any and all suggestions. I hope everyone is having a good day!

This happens to me too. My can go from 60-100 just sitting down in a matter of a few minutes. It's frightening. Deep breathing helps normalize it I think. My friend tried mine and hers only varied by 3 or 4 within several minutes. Hope you are feeling better today!

Thank you Sylvie. I was thinking of seeing a therapist for the emotional side to help me cope. Ive always suffered anxiety and now that i have a diagnosis i feel it might help sort it out.

Hi! Im new as well. I have the same questions. My symptoms are horrible and have gotten worse over the last few months. Prior to onset i went through 3 years of chronic stress and im wondering if that plays a role in this. My anxiety since diagnosis has spun out control. And now i dont know what is causing what. Hopefully someone can answer your questions!

In case anyone reads this I was able to get my appointment with Dr. Gilden on 2/16! I'm really hoping she can help me. Is there anything in particular I should ask to be tested for? I was informed she would spend most of the day with me performing blood tests etc so I'm thinking she will cover all the bases. If anyone has any advice I would appreciate it. Robin