Angelika_23

Don't get me wrong - Covid was awful. I never want to do that again. I think I had ALL the possible symptoms, but the worst for me was the agonizing body aches that made me cry, followed by the 3 days of shortness of breath and low O2 sats (90 - 93). I was terrified I was going to end up in the hospital but I didn't. I took Mucinex religiously, used an incentive spirometer, and my friend insisted I drink Liquid IV often and I think those things made a huge difference. I had a cough for a few weeks and it took a while for my taste/smell to come back but other than that no lasting after-effects. I feel profoundly grateful. As soon as I tested positive I was terrified and anxious. I am so glad I got through it ok, and while it was awful, it wasn't affected by POTS and vice-versa. Just wanted to share my experience. I felt so alone at the time, it was a horrible two weeks. I hope this helps someone. 

I don't know if you've thought about this option, but have you seen a chiropractor? I was having those horrible base of the skull headaches. I was nauseated and dizzy with them and light hurt my eyes. I regularly see a chiropractor for my back.  (He's aware of my POTS and Chiari.) I told him about my horrible headaches and he was able to mostly make them go away. I only have about one bad headache per month now instead of almost daily. Anyway, that's something to think about. Good Luck!

Thank you for the reply! I had the blood test yesterday morning. Now I wait. 

Hello, 

I've been having some trouble with POTS exacerbations, probably due to stomach issues. My gastroenterologist ordered a colonoscopy and the biopsy indicated possible early Celiac disease. I am getting a blood test tomorrow to test for Celiac disease. I am wondering if any other POTS person has had any experience with this?

Thanks!

My incision started bleeding last night. My left leg is really hurting too. I saw my Dr. today, and he put me on an extra week of restriction. He also said my leg pain was due to a bruised nerve caused by surgery, and I just have to wait for it to heal.

Nothing is ever simple. Ugh.

I put the stockings on this morning. OMG that hurt! Probably wasn't my best idea ever.

I am waiting on a call from my doctor anyway because one side of my (large!) incision is still leaking clear fluid. I need to make sure that is ok.

I wonder when I will be able to sit or stand again without pain?

I thought about that, but I'm afraid I'll rip my stitches getting them on! I guess I could try it and if it's too hard then stop.

Thanks Katybug!

I get this, and I have Klonopin for it. It really helps when I have adrenaline rushes too. I generally only take Klonopin in the morning, but sometimes I need it at night too, for this reason.

Hello,

Completely by accident, my doctors found out I was severely anemic. After a little investigation and a trip to my OB/GYN, we had the answer. I needed surgery and I was terrified to the point of being physically ill.

So, last week I had a hysterectomy. It was supposed to be a vaginal hysterectomy, but my uterus was too enlarged so they had to cut me open. I was so worried about anesthesia and how it would affect me. The surgery actually went pretty well (other than having to cut me open). My POTS didn't act up too much at the hospital, thank goodness. The only issue I was aware of was my oxygen sats took about 24 hours to improve to where I could be off oxygen.

Now I am at home, and I am having hot flashes and my ankles and feet are swelling. My doctor feels the swelling is because I was on my feet too much the past two days. I guess I might have been, but only because they scared me by saying if I layed around then I might get blood clots. I was determined to NOT get blood clots. I was either up walking or sitting upright in a chair (with my feet down.) I was off my midodrine while in the hospital, do you think that is why I might be swelling now? 5 days post op? I have stayed in bed mostly today, have restarted my midodrine, and the swelling is better but not gone. I was hoping to get through this without any major problems.

I am still hurting and still taking pain medication religiously. I have a cough, which is really making my abdominal area agonizing at times.

So now I am trying to find the delicate balance between up and down. No swelling, and no blood clots either.

I would welcome any suggestions.

Angela

You should probably be wearing compression stockings. I wore them religiously for a long time, but over the summer I really wanted to wear flip-flops. I got out of the habit of wearing my hose, and last week I took a good look at my legs and I'm getting varicose veins. My veins are also protruding out on my legs like blue cords. I'm back to wearing the hose.

I take 12.5 Metoprolol twice a day. It is very helpful.

It took 7 years for me to get a diagnosis. No one knew what was wrong. In 2007, I was admitted to the hospital and out of sheer luck, my doctor had just been to a seminar by Dr. Grubb. Because of that seminar the day before, she gave my mysterious illness a name. I wasn't crazy and I didn't have anxiety. I was so relieved. I had validation. Even my husband had started doubting that I was really sick. Unfortunately, she put me on Cardizem upon discharge, which made me infinitely worse. That was a bad couple of days.

I take 12.5 Metoprolol twice a day. It definitely helps. At first they tried me on Cardizem and it made me soooo much worse. Different things work for different people - good luck!

It can get better, even if you're not so young. I got POTS in my 30's and now (seven years later) I am starting to feel better and function more normally. I'm not back to dancing yet, but I think it's definitely in the future as long as I'm careful.

Thanks everyone!

Bigskyfam, my meds are on my signature. Those are what I take daily. I should exercise regularly, but being a mom of three and being busy cuts into that, plus trying to work a little. I honestly believe what Dr. Grubb said about it receding over time, and I think I needed to give my body time to rest. It's been a long time, and I can't say I was patient at all in the beginning. This illness did teach me some valuable lessons; I learned to let go and not try to control so much. I still get funny heartbeats at times, and I still have days where I am more down than up, but I am getting back some sense of a normalcy that hasn't been there in years. My biggest problem now is dieting (I am one of the few overweight potsies) and getting enough salt. Dieting and salt don't go well together and I can definitely tell when I am low on salt. I've lost about 20 lbs (yay!) and I still have a lot to go.

Thanks again for all the support everyone!

Hello Everyone,

I just wanted to come on and say Hello. I haven't been here in a while. Things have been ever-so-slowly improving for me. I didn't even notice the improvement until a phone conversation with my best friend. During the call, I told her what I had been doing and her response was, "You just listed off several things you've been doing, but you HAVEN'T told me you have been in bed for a few days." She was right, I hadn't said it because I wasn't.

I don't know why things are improving; I'm not doing anything differently. If I had to guess, I'd say that because I had a viral onset, it is slowly retreating. Dr. Grubb once told me that might be the case as viral meningitis caused my POTS.

I'm not 100%, and I still have triggers and I still have bad days. Heat still sets me off pretty quickly (it's my worst trigger.) The difference is, my bad days are nowhere near what they were even a year ago,and certainly nothing like they were 7 years ago.

Stairs are still a big challenge for me, but I'm not sure if it's because of mostly POTS, or me being de-conditioned for so long now.

I'm not here to gloat, I just want to say that there can be hope. Even if it isn't a total reversal for me, it's something. I hope that this post can give people hope that things can improve.

Angelika

Just putting this out there... My oldest son was almost taken out by H1N1 a few years ago. He got the virus, then the complicated pneumonia behind it - the one that was killing people. He was in the hospital almost a month, lost 30 lbs and had to have chest surgery twice. Our whole family gets the flu vaccine now. (The normal flu vaccine now contains H1N1 as well.)

I understand that some people have reluctance to immunizations, but as a Mom who almost watched my child die from something I could have prevented with an immunization, I say they have their place. I never want to go through that again.

Angela

Thank you so much everyone. Today I am feeling a bit better. I wonder if I was low on salt and fluids. The broth I have is straight from the butcher shop so it probably doesn't have a high salt content. I am drinking more now that my stomach is handling it better. I ate some saltines and they stayed put. This has been an awful experience. Today I do have a headache (and a toothache!) My stomach is still really puffy, not sure what is going on there. I have lost 10 lbs during this episode. Granted, I could stand to lose them, but still not the best way to do it.

chaos, He didn't say what the T waves were doing, just that they were off. When I looked at it, It looked like mountains up for a bit, then mountains upside down for a bit.

Looneymom, so sorry for your son. I feel for him! I hope you get him straightened out soon.

Today is worse. I am weak and my heart feels like it is "bumping" funny again. The diarrhea is still there. Anytime I put anything into my stomach it swells up and I feel like my throat is full. I am burping a lot.

I tried to run to the butcher shop to get something for dinner for the rest of the family and ended up almost passing out. The store owners wanted to call 911.

I called my PCP but they told me to push fluids and take Imodium, and to see a GI doctor. I can't get in to a GI doctor for two weeks, I tried.

On February 9, I started with a fever, etc. Influenza A. I got Tamiflu and my fever broke about a day and a half later. After I started feeling a little better from flu, I started feeling nauseated. The nausea kept getting worse and worse until it all came to a head. Norovirus. This was a very bad virus and it just keeps on giving. After the night spent in the bathroom, the nausea receded slightly, only to come raging back worse than ever. To make matters worse, a week later I started feeling like my heart was beating "funny" and I was so uncomfortable I finally went to ER. They did an EKG and it was abnormal, something about 'T' waves... Fortunately, the doctor had heard of POTS and didn't call me crazy or anxious. He did bloodwork and found that my potassium was pretty low. He said my low potassium was what was causing my heart to beat funny and the abnormal EKG. He said that with me getting two illnesses that close together I had lost too much potassium. So I got an IV, some potassium horse pills and some Zofran that didn't work for my nausea.

My stomach is still unhappy, and I have this tight pressure feeling right in the middle of my chest that comes and goes. I am on a clear liquid diet and even that isn't sitting well. The potassium pills are HUGE and they really upset my stomach but I have to take them. I pretty much stay on the couch or in bed, which isn't good as it is making me more intolerant of being upright. I feel so weak and uncomfortable. I get winded just walking around in the house. I feel guilty as my house gets more and more out of hand and my husband works all day then comes home to another full time job while I lay on the couch.

I went to the family doctor and she said if my nausea isn't better by Friday then I have to get a CT scan to see if there is anything else going on. I wonder if the nausea and the chest tightness/pressure could be related?

Thanks for listening to a fellow POTS-ie whine...

Southbel,

I mentioned in another thread to you, but thought I'd post here too. Have you thought about trying Klonopin? It seems to help quite a few of us on here. I'm glad you started this thread, it made me see that I'm not the only one with this problem.

I did not pass out for my TTT and it was positive. I was terribly symptomatic, my HR hit criteria in less than a minute in! I only lasted 7 minutes total. Passing out is not a requirement for a positive TTT.

Hi, I was in the same boat in the beginning... An ER doctor put me on Cardizem and it made me so much worse! When my doctor at Cleveland Clinic wanted to try me on Metoprolol I was very afraid to take it. I think I waited a few days before I got the courage to try it after the Cardizem fiasco. I'm glad I tried the Metoprolol, it is helpful to me. I am on a pediatric dose, but more is too much for me.

Southbel, I have nighttime adrenaline surges and Klonopin seems to help those. Maybe that's something to think about for you? I take a teeny dose, that's all I need.

Hi,

I have been diagnosed with Chiari as well. I actually had one neurosurgeon tell me I needed surgery ASAP. I was very scared, and got a second opinion and more tests. The second opinion said no surgery, so I needed a tiebreaker. I saw another neurosurgeon, a very prominent one who was recommended to me and he said Absolutely no surgery. I am glad I sought more advice... I was so desperate for answers, but brain surgery is serious stuff... I know exactly how you feel Monstrosity. I am sure you'll make the best decision for yourself. Good luck.

Angela

Mine started after a bout of viral meningitis in my late 20's.