DIXZELAND

I have seen Dr Levine and Dr. Suleman, both dx me with Pots. The thing with dr. Levine is that he doesn't see patients on a daily basis such as follow up care. He is a professor and only gives the Pots dx. On the other hand dr. Suleman has been my dr for 2 1/2 years. He also has a degree in journalism and will be starting his own talk radio or talk Internet live site to spread the word about Pots. He is a genius I think. He has 3 offices, speaks at the meetings held once a month in Richardson and devotes all his time to his patients. I don't know anything about the other 2 drs. Good luck!

Bless your heart. I've felt bad for so long I don't think I remember what sex is.

I'm in the same boat myself

Hi, I've been following your post about your daughter and praying for you all. I'm so glad to see she is stable for now. I'm also so glad you did not listen to that one doctor about her having an eating disorder, and took her to someone you trusted. Always trust your instincts. I'm fairly sure your doctor new the other one was full of it, but he had to diagnosticly rule it out, because it was in her record now. He did right by you, but had to put her through things he probably wouldn't have. When you get your breath you might want to go back to that doc's hospitals administrators and make a formal complaint and challenge that guy, he will do it again to another patient, if he hasn't already.

What type of doctor is she seeing right now (duke)? I was also wondering if you all had done any testing looking for cause of these symptoms? Many times there are underlying illnesses causing the presenting symptoms like pots/ncs, PAF can be a cause of the other symptoms. I don't know if you have done any reading on dinet's main page, but there are so many conditions that can lead to pots and syncope. The reason I'm asking is because depending on the suspected cause, you would need to see different types of doctors.

For my diagnosis which are a small fiber neuropathy, immune deficiency and pcos/metabolicy syndrome, and yes they all are related to each other triggering my different symptoms. I see a neurologist who specializes in autoimmune neuromuscular neuropathies, an immunologist who hopefully will be helping me with my infection rate, an endocrinologist that deals with metabolic dysruption caused by the small fiber damage to my gi tract and a cardiologist that did my TTT and manages my BP/HR swings and makes sure I'm not developing further cardiac problems. I also have a primary who I hope will be able to manage some of this once I'm finished with the diagnostic stuff. She will be taking direction from the specialists.

Your Duke doctor might be able to do that for you with your local doctor. When you mentioned she was having gi issues to along with the pots and syncope and made we wonder if she is suffering from an autoimmune neuropathy. There are different treatments for these type of causes directed at cause and not simply treating symptoms. If she was also hyper mobile you might look at EDS, or if she gets a lot of infections/colds you could look at a primary immune deficiency, those are just a few causes, the list is long.

Though I've been sick for a long time, my diagnosis has been evolving and I believe finally is correct, I'm now 54. It took way to long, I have hope for your daughter she is still young and with the right diagnosis and treatment can and will fair a lot better then I did, better to know sooner rather then later. She will also benefit from the active research now going on, much of the research is still very young compared to other illnesses. I hope this answers your questions, let me know if there is any other way I can help.

My own theory agreeing with AZ Girl, is that something underlying is causing the POTS. For me after two long years of battling POTS, my endocrinologist discovered I have Hyperparathryoid disease which can present all the symtpoms that have brought on my POTS. I am scheduled for sugery on my neck to remove the tumor(s) in Sept.

So many of us deal with this - but what do you all do to help when it happens?

I usually just relax all day and all night with little or nothing to do except watch tv, play a hand held game, crossword puzzles, etc. I take advil, and believe it or not, it actually helps me feel better. Be sure and drink lots of fluids too. It sometimes takes me a week to get better or longer before I can resume light activities.

I have been going through a flare up since this past Tues. And yes, I feel so weak as one of my symptoms. I describe it as having a virus or the flu feeling. For everyday that my body is weak and tired, it will take me two more days to feel better. My heart rate is so high, I am having to use my alternate bp meds to help keep it down. I don't know what triggered my flare up again, but it's terrible.

Hang in there, better days ahead as I always say.

So as we bump along waiting for her autonomic testing appointment, I have a few questions not for the doctors, but for you all...

1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS.

2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS?

3. Does your heart rate increase when you eat? By alot?

4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFUL

5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep?

6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process??

8. Tachycardia - how high is too high?

*sigh* I think thats it. I hope its okay to put my questions out like that. I know they are questions for the doctor doing her testing, but I just need to get my head around a few things and be organized before that appointment. Thank you all for any answers...

I have had POTS for 18 months. Suddenly appeared out of know where. I have all the symptoms above except my bp never got low. It was always very high along with a high heart rate. I have Osteoporosis at age 44. I went to see a new Endocrinologist because I wasn't able to strenthen my bones through meds and injections. My new doctor tested my Calcium, which I told him was always out of range "high", but no one seemed concerned. He test my calcium along with a PTh which is Parathyroid Hormone. And low and behold, it was high as well..I have Hyperparathyroid disease. If you read about this, it has all the symptoms as you described as above. I am not saying that everyone has POTS has this other disease, I am just saying that this is what is causing my POTS. I am going to meet with a surgeon in July to discuss removing my parathyroid gland(s), which ever one has the tumor growing on it. My POTS doctor said this indeed could be the culprit to causing all my POTS symptoms!!!

Just thought I'd share, it might help someone else. Parathyroid disease is uncommon and surgery is the only fix. Parathyroid.com is the website.

Hello all! I recently had a blood test in Sept. to check for abn. calcium and parathyroid, it all came back normal. Now, as of last week, both my calcium and parathyroid levels are high. I have to have a bone density test and a Sono of my neck to look at the parathyroids. Also I have to do a 24 hour urine.

Anyone gone through this? They say it might be what is causing my POTS. The symptoms for Abnormal Parathyroid are mostly identical to POTS patients.

Wish me luck:)

I have had POTS for the past 18 months. I have been determined to find the cause myself. Because I have good insurance, I have persued onward to different specialist with a list of my symptoms. So far I don't have MS, a brain tumor or Renal Artery Stenosis. My next visit will be my Endocrinologist. I was dx with Menopause at age 44 along with Osteoporosis. I am now 48. I have an abnormal AgG titer which is high and a high ANA titer as well. After the Endo, on to the Rheumotolgist. There is something causing this, you just don't wake up one morning with POTS as I did with no explaination.

((hugs)) Dixie

That's wonderful news! This kind of story gives us all hope. I just posted a topic about "anyone ever gone into remission" and you my friend have answered it as YES:) This really puts a smile on my face. Again thanks,

Dixie

I've had my POTS for 18 months now. I may feel better without issues for 3 days at a time but then it all hits me again. Just wonderfin if anyone with POTS truly goes into remission for months or years at a time with no flare ups. I'd like to know the secret if so. I know by now there is no magical pill to take, but somethings gotta give

Just curious to know if anyone uses the support hoses daily. I heard they are very uncomfortable. But if they really work, it would be worth the misery to wear them then to be miserable with the high bp.

Thanks for comments!

I always believe that when one door closes another one opens. This might be God's way of allowing him to find another church home with loving support. They need to understand that he is "physically challenged" and to not hold that against him because of his illness. Have you ever thought of him using a wheelchair? I had to resort to that. I didn't like the idea of using one, but after not being able to walk around and being left behind, I decided to use one.

God Bless you both and don't give up on finding a new church, it was meant to be:)

Dixie

I get these tremors at night too. I can be awake watching tv in bed or sound asleep where they wake me up. Sometimes they are more like "jerking". It could be my shoulders, an arm, a foot, a leg, thigh etc. I just had an EEG done two days ago. They are looking to see if I might have "night seizures".

((hugs))

Dixie

You are not alone. Every morning it takes me about two hours to adjust to getting out of bed. My bed frame is even elevated on blocks to help with the upright position. I take my medication and wait for it to work so that I can just drink my decaf coffee. If the symptoms don't respond, I have a back up pill I have to take. If I'm not careful, my anxiety gets the best of me.

There are times that I went completely down hill. Changing medications is what helped me. The doctor trying to find the right one, the right dose. I still struggle though. This illness is not pleasant. POTSY's are unique as a snowflake, everyone is so different but so much the same.

Glad you joined our post here. Lots of support because we all care about each other:)

Dixie

Thanks for reply. Are both your systolic & diastolic high? I'm wondering how you lower systolic without the diastolic getting low. Hope that makes sense.

Yes, on bad days, it can get up to 188/108. They work high together:(

Anyone have this type blood pressure? How do you treat it? I've had this for years but now it's getting worse. My BP avg is 180/70. Dr is afraid if he gives me BP med to lower it will make my POTS symptoms worse. Thanks.

My bp is always high, so to control it my dr. gives me Clonidine 0.6 mg 3 times a day. This helps relax the blood vessels so the heart doesn't have to pump as hard. It's not a beta blocker. Sometimes I only take two, because it makes my bp get really low.

Good luck;)

I have a question for any of you with MCA. What kind of specialist takes care of pt's with this? I've been reading a lot about it. Just curious.

Thanks,

Dixie

I too am a naural worrier. I am always thinking of the "next" flare up. When is it coming, how bad is it going to be, etc. I think I may have OCD. I try to think positive, but it's hard for me to do. I repeatedly take my bp hoping that its not high. I just have to "see" that it is normal so I can quit worrying for a few hours. I understand how you feel.

Dixie

Welcome to the POTSY family Ryan. We are glad you finally have the dx you've been waiting for. Please keep us updated on any new information they find.

Dixie

The anorexia is from the extreme weight loss caused by stress and anxiety.

I only weighed 89 pounds in her office.

Iknow how you feel my dear. I am going through so much right now and can't eat. I have no desire to eat. I have lost 8 lbs in 1.5 weeks now weighing 117 lbs. The thought of food just makes me want to throw up. My panic attacks are constant. Please know that you are not alone. We will have good days again

Hey Dixie-

My nephew was Dxed with this at age 2. He began breathing strangely. At the hospital they realized his BP was sky high. The affected kidney had actually shrunk to half the size it should be.

I pray you are correct that your POTS will disappear once this is corrected Out of curiosity, do you have the typical risk factors for this condition: hardening of the arteries, high cholesterol, high BP (typically- not related to this) cigarette smoking, diabetes? If not, I wonder about less obvious causes like fibromuscular dysplasia, a partial dissection, lots of inflammation in that artery? These causes MAY be related to your POTS and point to an underlying connective tissue disorder.

I also have a brother who had a dissected carotid, and another brother with a perforated aortic aneurysm- lots of autonomic dysfunction in the family too. We are told we have "an unknown connective tissue disorder." I fear you may too.... BUT hope I am wrong!!! Just to be safe, ask for a MRI/MRA of your whole trunk to rule out any other odd vascular phenomenon.

Best of luck with your treatment & please let us know what you find out. Thank you for sharing. This may help many here.

Lots of prayers coming your way-

Julie

I am adopted so I don't know anything about my family tree. I am not diabetic, don't smoke, never had high bp in my life until that one odd day and then ever since. I have always had a high ANA, but only met 3 of the 4 criteria for having LUPUS. I am so thankful that my POTS/cardiologist is smart enough to have ordered such a test. My prayers to God was that He would give my cardiologist the knowledge to dig deeper into finging why my bp wouldn't respond to medication. And HE did! Thanks for your post:) Dixie

So, what kind of doctor is your POTS doctor that found this through the ultrasound? I see you mentioned your nephrologist had done an ultrasound, and apparently did not pick up on it.

my POTS/Cardiologist ordered the Renal Artery Ultra Sound yesterday. My Nephrologist had ordered just a plain Ultra Sound of the kidneys because I was having hematuria. I did not have any symptoms of POTS while I was see my Nephrologist a few years ago.

So what all were your symptoms besides high blood pressure? And apparently it's just on standing?

I have attached a PubMed article from 1998 talking about MSA and NS. The last paragraph is what really gets me thinking. It mentions that NS can cause splanchnic congestion upon standing, and it seems like we are always reading about "splanchnic pooling" when reading about POTS.

http://www.ncbi.nlm.nih.gov/pubmed/9721569

It kind of makes sense--if we are standing, something like a blockage at the left renal vein would cause pooling. I absolutely know that when I am standing, my abdomen feels like it is blowing up like a balloon! That has been a bad symptom for me with POTS. The sad thing is, I mentioned to my cardiologist about a POTS doctor finding Nutcracker in some of his patients, and he didn't even say a word to address it, much less even entertain the idea. And I brought it up to him because they are cardioVASCULAR doctors. I thought he would address something like that. So, I tried to get a doctor to look at it. Maybe I just need to go see a nephrologist, darnit!

High bp upon sitting upright and standing. High hr as well as sitting upright and standing. Symptoms of these are better or normal upon laying down. I get confused when the bp is past the 150/99's. I get nausea and anxiety. I sometimes have trouble eating as even a small meal makes me feel like it just "sits" in my stomach and doesn't digest. I was told that a Vascular surgeon would do the stent placement. So if you are interested in getting tested look for this type of specialist. I do have a nephrologist because I have Hematuria. I've had IVP's, Kidney Ultra Sound but everything was normal. So I don't have an answer to this.

Good luck and I hope you find someone to test you for what I have found.

Well, it's just that we had talked of Nutcracker Syndrome sometime around last summer. It has to do with compression of the LEFT renal VEIN. I just thought if it was on the left, maybe it could be "connected" to the few that were finding Nutcracker related to their POTS.

Thanks for reading my post Sue. I just want to help others to have this test as it could also be going on with them and they don't know it. I am in a wheelchair now to help keep the bp from getting into the 200/100 range. I weigh 118 and for me that high bp gets the best of me. I may have Kidney disease, but its too soon to tell until I see a vascular surgeon.

Left or right side?

ride side. Does it mean something on what side or the other?