Pots Questions - New To Forum

[erikainorlando]

Hi.

I am new to all this. I am so confused and my life has really beeen turned upside down with so few answers.

I am 45. Have two kids, 15 and 10. I am normally pretty healthy expect that I had Guillain Barre in 2001 which nearly killed me and left me with some nerve damage in both feet and lower legs. But I have really made do, I can snow ski and play tennis....un heard of for a girl who was never supposed to get off the ventilator.

Anyway, I got a virus in September of last year. I got better from the virus but never really felt well. I couldn't explain it. I just knew I was sick...didn't feel right. Very weak and some sinus symptoms...pain in my face, neck, throat, and chest and short of breath. Doctors couldn't figure it out and neither could I. I finally started going to the hospital (a lot!!) Unfortunately, as they would take my heart rate when I was sitting down it was high but not that high.

You know the drill, finally someone did a holter monitor and my heart rate was around 190 at the peak and anytime I was moving it was well over 120. I also had about 100 + ventricular events (should I be worried about these?)

The cardiologist send me to a electro physiologist who immediatly said it was "inappropriate sinus tachycardia". Finally someone had a diagnosis....I was so happy but not convinced. He then did a tilt table test....HR 90 laying down and 140+ standing up. Didn't have the blood pressure thing.

I am on 25 mg toprol in the am and 12.5 before bed if needed. It does slow my heart rate...I am around 60 lying or sitting and around 90 standing. I do feel so much better on the toprol. However, I still do not feel right. I just fall apart around 2 in the afternoon. I have to lay down. I feel so sick and can't explain it. Kind of feels like I am not getting enough air and am being chocked. Pain in chest and in back (mid back by the heart). If I lie down for an hoiur or two I can go again for a few hours but it really depends. Most nights I am in bed by 8:30, so weak...exhausted.

I don't understand why I am still feeling so sick if my heart rate is pretty much under control on the medicine. I really still have a hard time getting around. The more activity...the sicker I get....if I rest I can get it back together.

I also have started to have very sharp pains in my stomach and then have to run to the bathroom. The pains in the stomach are severe.

Finally, I have neuropathy from the Guillain Barre but sometimes now I have such bad joint pain and just pain all over....terrible pain. Does this make sense?

Does anyone have pain in their face...like discomfort in the sinus area.....along with just generally feeling like my head is going to pop off? I have been tested for allergies...acctually they spent 6 weeks sending me to allergists.

Oh, and feet swell and turn purple. I think this is typical from what I have read.

I have finally had to break down and apply for disability.....I can't seem to really work a full day.

So.....................help.....does anyone know some doctor who can help in Florida? Do the symptoms I have make sense? Is there another medicine I can ask my doctors to try me on?

I am really starting to get depressed. I was so happy to finally get a diagnosis. But now I really need someone to hep me. My neurolgist is wonderful but seems totally lost and says just to rely on cardiologist. The cardiologist says take the toprol and this will pass.....(like a kidney stone!)

I really appreciate any insight.

Thanks!!!!

Erika

[all4family]

Hi Erika,

Welcome, though sorry for all that you have gone through to bring you here.

I always say just that statement about I feel like my head is going to pop off!!! I do get facial pain, but mine is mostly because I have headaches....

You must be pretty tough to have beat Guillain barre!! Some doctor along my travels had mentioned a disease that is almost the same as guillain barre, but it is chronic instead of acute. I am wondering if you have Guillain barre if that makes you more suseptable to the chronic one....just a thought...I don't know if they are the same.

I know how it feels to go to the hospital a lot! (they just never kept me!)

I did read another post, I think it was "my wife is in the hospital" that mentioned a good doctor in Florida. I think there is also a Mayo clinic there.

I hope you get feeling better soon, and I hope to see you around....although if your feeling better I probably won't be seeing you... Ha Ha Ha!

take care

Hugs

Suzy

[janiedelite]

Hi Erika,

Wow! You've been through a lot. I'm glad you got a POTS diagnosis. Beta blockers do slow your heartrate, but your heartrate isn't usually the reason for the fatigue you feel as the day goes on. The tachycardia is a compensatory response to try to get blood up to your brain. Your purple feet are a sign of venous pooling, so maybe you need to work on treating the venous pooling/hypovolemia? Have you tried compression hose? Most people on this website wear them and I have to wear them as soon as I'm out of bed. Also, be sure to stay hydrated. Some of us have a high sodium diet to help retain fluids. It might be a good idea to invest in a home BP cuff or heartrate monitor.

I've also developed worsening reflux, abdominal pain and constipation since getting POTS. My small intestines don't push food through normally anymore.

I understand about the breathing issues too. I've explained it as a dull ache over my chest that can become sharp in the heart area, but it also feels like I'm breathing against resistance (like breathing through a straw).

I have a local neurologist who specializes in treating small fiber neuropathy (the cause of my POTS), but there are no neurologists in the Pacific northwest who know about dysautonomias. So I had to go to Mayo where I had a thorough workup. He prescribed lots of fluids (3+ liters a day), high sodium diet (4+gms a day), exercise when able, avoid stress, waist-high compression hose, and some meds. It's just kind of trial-and-error to find the right balance for each of us.

You mentioned having constant pain. YES! My skin burns as a result of the neuropathy, but my arms and legs ache from the blood pooling. My head/neck/upper back hurt when I'm up for very long as a result of lack of bloodflow. That's called "coathanger pain."

There's no way I can work right now, either. I'm an RN and used to work 12-hour shifts, up to 20 hours at a time when I was on-call. Being upright, stress, even talking worsens my symptoms. But by being careful to not overdo things, stay hydrated, rest/exercise (I walk 1/2 a mile twice a day), etc. has allowed me to keep my symptom flare-ups to a few hours or days. I'd be in bed for weeks before I knew what to do.

I'm sorry you've been saddled with this disease, but keep trying different treatments. Last year, I thought life as I knew it was over because I could hardly get out of bed from the fatigue, nausea and pain. Now, I'm learning how to adapt to a new "normal" and can do things like cook, houseclean, and even some driving.

Take care, Janie

[ajw4790]

Hi!

Welcome! Sounds like you have been through so much! But, luckily it sounds like you came across a good dr that was able to give you a POTS diagnosis. Which is a good start, but if he was the one that just made it sound like a kidney stone and that it will just pass, it will probably be a good idea to find a specialist. I am not real familiar with FL, but there is Mayo Clinic at Jacksonville that I have heard of people going to. Also, you can look on DINET's website for other drs in FL. With your medical history you may end up finding that you may have to travel a ways to someone that is very familiar with dysautonomia, like Dr. Grubb in Toledo, Vandy, Mayo, or Cleveland Clinic. I also would say that for you you may find the most help with a neurologist and not a cardiologist. Not to say don't see a cardiologist- do see one. But, I think a good neuro. may be the most helpful. It sounds like what you are experiencing in due to the neuropathy caused by Guillian- Barre. POTS can be caused by small fiber neuropathy that affects sensory and autonomic systems. So, finding out more about the current state of the neuropathy and what all it is affecting may be the most helpful. But I am not a dr...

Hope that helps! I am foggy brained at the moment....

[Broken_Shell]

Hi Erika,

Welcome to the forum, although I am sorry that you have had to find your way here. I wish you advice and support as you post and browse the archives. I would recommend reading the posts entitled "My wife is in the hospital" as well. They were posted by the husband of a patient in Florida in the recent weeks. I have also had to apply for disability, and my advice would be to make sure that you tell your doctors all of the symptoms that you are experiencing and how they interfere with your daily life. Don't leave anything out, no matter how trivial it seems. If you can no longer prepare meals for your family or get yourself showered and dressed on a consistent basis or make short trips to the store on a regular basis, tell them this and make sure that they make note of it in your record because your decision regarding disability will be based on your functional status, not just your diagnoses. Best wishes, and I look forward to seeing your posts on the forum.

Take Care, Broken_Shell

[erikainorlando]

Thanks for your input!!

This hasbeen such a hard time. I went back to the cardiologist yesterday who referred me to the electro physiologist and asked him to help me get out on disability. He said he didn't do that my PCP would have to do that. He also said he had never heard of POTS. My boyfriend was with me, he ties to be so supportive but is so frustrated as well.

We left and I started crying. I am going to my PCP tomorrow to ask him to help. I am clearly so disabled. I don't even really understand what is going on with me. I really need someone to take me out of work and then FIX me!!! My eletro physiologist waid he would try to get me out of work but said it probably wouldn't hapen with this diagnosis.

I feel so guilty fo my kids and my boyfriend and even my job. I want so much to be better but I just still am so limited even on the toprol. Furthermore, I know every one really wants to help me but they don't know what to do with me.

I am trying to get into MAYO in JAcksonville with Dr. Kusumoto. I think I need a neurologist tho.....Kusumoto is a cardiologist. They are all out of network.....so I am waiting to see if my insurance approves.

Sorry for venting......I just don't know where to go with all of this

[goldicedance]

Hi, Erika:

So sorry to hear all your problems. My POTS started after a horrific ear infection.

I live near St. Augustine.

I see Dr. Kusumoto at the Mayo Clinic. He has a great deal of interest in POTS. There is also a neurologist there who I first so (can't think of his name) who knew about POTS. I think Dr. Kusumoto has a much more current knowledge base.

Regretfully, there is no magic bullet. I got sick when I was about your age. I worked for a number of years- loads of absences, complete exhaustion when I came home from work; complete exhaustion during the weekend, and then the whole thing started over again the next week. Fortunately, my employer let me work at home so things settled down somewhat until I got GI problems and then breast cancer.

If you would like to talk, please PM.

Good luck getting into the Mayo Clinic and getting some relief.

Lois