Latacia

Hello micheller and welcome to the forum!!! Sorry to hear about your diagnoses. Something like that is never good to hear. I feel as though I had pots as a teenager, but my symptoms got worse after the delivery of my son. To answer your question about the aches and pains. If I'm not mistaken this is normal. I can't tell what symptom goes with what anymore. I also have fibromyalgia and arthritis also. As for the contacts I would not know. I do not wear glasses nor contacts but I do suffer from eye problems such as blurred vision,double vision,and my eyes do not focus all that well. If you have any questions please feel to contact me.

I have been have excruciating pain in my right knee and hip for over a week I finally went to my gp and he told me that I had bursitis. He prescribed the med meloxicam. I am super sensitive to meds and i am wondering if anyone else has took this med before and did you have any bad side effect.

Yea, I'm still on it. The only thing it helps with is my heart rate and sometimes I can still feel my heart beating too fast especially when walking to much. I take 120mg in the morning.

Ok, i'm trying to see if anyone else has this problem. I don't know if this has to do with pots or what. I do have tremors and I know that pots causes it, but normally my hands shake alot and my body does when i'm upset. Lately, my head has started to shake on his own...maybe my neck?. Sorry if i'm not making any sense LOL. It's not frequent and I really don't notice it my mother brought it to my attention. She asked me why was I shaking my head while she was talking I told her I didn't know. Hopefully one of ya'll can help me with this question. My neurologist seems to think it's normal and everyone does it. I need to find another one.

What type of doctor would diagnose MCAD? I would like to get tested for this myself, but I am clueless.

Well my prayers have finally been answered. I am getting help to pay for my medical cost to see Dr.Suleman. My question is has anyone on the board seen him before? I know you can't really discuss this over the fourm so please message me. I would really like to know more about this doctor. Thanks!

Hello,I too have been diganosed with fibro and I have been taking 60mg of Cymbalta for the past 4mos. What I can say is that for the most part it has been helping but some days it only takes the edge off of the pain. It took awhile for my body to get use to the med. I don't know how sensitive your body is to medication but mine is really sensitive and because of that reason my neuro won't go up on my dosage. I have tired many meds to help with the chronic pain and this one seems to work the best. Also you may want to ask your doc about lyrica. I have heard many good things about it. I can't take it due to my edema. Hope I could somewhat help with your question. Oh yea and I like how some docs use exercise as a remedie. How can you exercise when you are in constant pain??

I haven't been on here lately. I have had so much going on along with my pots getting worse. I had 10 tubes of blood drawn Wednesday for some more test. Since I hd the blood drawn my body is feeling weaker than it normally does and the dizziness is super crazy. This is the first time I have had blood drawn like this since I have been diganosed. Has anyone either had an experience like mine after have this done??

O Negative

@jknh9 no,sorry I'm in MS @Pat thanks for the info I didn't know there was a support group link.

I would like to start a local dysautonomia support group in my area since there isn't one. I really don't know how to go about starting one and I haven't found any goodap information on the internet about starting one either. If you have started one or know of any good information on the web then please post here or inbox me. I would really appreciate it.

@Sue it was 58 and not fasting. I will be sure to look that up. Thank you. @Jenny Thanks, I hope everything turns out well too. Good luck with all of your test! I have so many things goin on with my body that its kinda hard to know what symptoms are coming from what problem.

I hate going to the doctors office. It seems as though every time I go I am always finding out that something else is going wrong. So I went to my gastro last week and they called me today with my lab results and I was told my blood sugar was low. This is the second time that I have been told this and I am not a diabetic. How many people are there on here who have this same exact problem? I know pots effects the whole body but with everything that is going on I feel as though my body is falling apart.Not to mention my gallbladder is inflamed,not working properly,and is causing me alot of pain so I will be having surgery this week to have it removed. Anyway sorry I got off topic just had to rant for a minute. Thanks!

I agree with Lindsey.Do you know what your vitamin d level is? If that is low it will cause alot of fatigue.Maybe one of your meds may be the cause? Are you on anything new? If this keeps up I would talk to your doctor about it. I was having sleep issues myself and my neuro order a sleep study. I had severe sleep apnea and didn't even know it.

Has anyone filed or is anyone on Disability due to pots? If you don't mind me asking how long did it take for you to get it? If you have filed what stage are you in with your case? I have filed for SSI for the fist time and I listed pots plus 4 other illnesses that I have and I have been denied. I plan on fighting till the end. I filed by myself but I am going to hire someone to help either a lawyer or legal aide. If anyone knows anyone good please send me a message. I would love to go back to work put as of right now it is impossible. I was told that I could be a babysitter that is why I was denied. I can barely take care of my own so I don't know why they would think that I can take care of someone else's. Anyway, hope everyone has a good day today

I was on Toprol XL and I had an allergic reaction to it. Then my doctor but me on Bystolic and I had bad side effects with that one. My body is super sensitive when it comes to meds and so the doc is trying me on something different it is Diltiazem. It's a calcium-channel blocker. This is what is says on my paper from the pharmacy. "It works by relaxing the blood vessels so the heart does not have to pump as hard. It also increases the supply of blood and oxygen to the heart." My bp is always a little high though and the only time it will drop is when I am standing on my feet for a period of time. This med helps lower my bp so if your bp is already low then this med is not for you. I have been taking this med for for 4days now and so far so good. Hope this helped some.

So, I had an allergic reaction to toprol xl and bystolic made my headaches come back now the doc puts me on this. It's a calcium-channel blocker. Is anyone else on this type of medication? Does it work for you?

Well today has not been a good day for me. I haven't been diganosed with pots for that long and I am still grieving the loss of my former self. I am always having new symptoms and I feel as though it is getting worse. The town that I live in has a few cardiologist that don't know anything about pots. I go to a doctor two hours from home. He's the one that diganosed me with pots but told me he doesn't know that much about it and it's not his specialty. I can not afford to go out of state and pay outrageous money to a doctor that I don't have. My family doesn't even try to understand what is wrong with me. I ask my self why me sometimes. I feel like I'm too young to be dealing with all the problems that I have. I have filed for disability and have been somewhat discourged about that. My disability examiner is always telling me "your just too young to be disabled." I would love to get a job...**** I can barely take care of my kids. Ok , so now that I have said everything above. How have you coped with your diagnoses? Thanks in advance for your time and responses. I have really found comfort in talking with you all on here. It's nice to communicate with someone how actually knows what I am going through.

Hi jjbaker173, My cardio put me on toprol xl and for the first week I was kinda tried but it helped with my palpitations. I too am super sensitive to meds and I had to stop taking it due to an allergic reaction. My body started to swell real bad and feel tight. I have migraines and since I have been on my meds I haven't had one but when I started bystolic they came back....with a vengence. So I am no longer taken this med and I have to wait till I go see my cardio tomorrow to see what else he may want to try. So far nothing has worked.

Thanks Elizabeth I'll have to try that.

Well for the first time last night I passed out during sex. While having sex I felt my heart rate speed up,I felt pressure in my head and then I passed out. When I woke up I got up and checked my bp and it was low and my hr was high. Has anyone ever had this happen to them or is it just me?

I am currently seeing a electrocardiologist 2 1/2 hours away from the town that I live because the cardiologist in my town no nothing about pots. I feel as though I am not getting enough care from my current doc and I would like to try and make a vist to see Dr.Benson in AZ. I have heard people talk about him on here and on other fourms about how much of a good doc he is with people with pots. My question would be what is the cost of being seen there at the clinic. I am currently on MS medicaid. Do they take out of state medicaid? After you receive an appointment and you arrive at the clinic what happens next, like how many days are you there or does it depend on the situation? Thanks in advance for the anwsers.

My electrocardiologist and my neurologist both diagnosed me with pots. I have had two tilt table test. One by my neuro and one by the cardiologist. My neurologist also did a reflex screening. I was told some people who have pots have other types of autonomic disorders such as Lyme disease.but, I may be wrong thats why I asked.

Ok so I have postural orthostatic tachycardia syndrome. I haven't found a medication that has helped my symptoms and I feel like they are getting worse. I know chest pains are often associated with pots but I feel as though I am getting them more often now especially after walking,light cleaning,or laying down at night. Does anyone else have problems with frequent chest pains? Also, I have not been tested for any other dysauto disease and I am curious does pots normally come from another disease or can it just develop on it own? And who would I have to talk to about getting tested for other dysauto diseases? My family doc,neurologist,my cardiologist? Thanks in advance for your time! Hope everyone's doing fine in all this hott weather!!

I have had the chest pains while I was off of bystolic also. I will discuss these issues with my cardio on the 15th of next month.