StayAtHomeMom

It sounds like you have a good plan. Definitely talk to your doc and show him the data you have collected. And to answer your question: yes, POTS can cause anxiety. Anxiety can also make symptoms worse for some people so it can cycle. Symptoms are individual and can vary greatly person to person. The main sign is a change of 30BPM or higher (or over 120) that sustains without significant BP change. Unless you are underage and then it is 40BPM. It is a good idea to have certain blood tests to rule out deficiencies. Good luck and I hope everything goes well for you.

I would see your doctor about medication changes. There are lots of different medications to help with blood pressure. And be careful with high blood pressure. When in doubt just go to the ER. My hubby had a small heart attack a few weeks ago and it has turned our life upside down. Good luck.

I think you should reapply too. I would keep applying. You shouldn't be working. You have too much going on for you to have to worry about money. Has you leg been rechecked for clots? I don't have a clotting issue but I have heard they can be painful.

Please update on the POTS protocol/pain program as well please. I have never heard of that and it will be interesting to see how it works for you. As a side note I thought my specialist was a little odd too, but the more I go the nicer he seems. It is like at first you are just data, but he warms up to you as he has a face to go with the numbers. Good luck!!

I have had full PFTs, echocardiogram, EKG, 24 Holter monitor, 2 TTT, 2 urine catacholmine tests, basic blood work, 3 ANA blood tests, rheumatoid panel, ultrasound of upper right abdominal quadrant, endoscopy, 2 sinus CTs, a brain MRI, 2 chest x-rays, chest CT and a nerve conduction study. I am sure I have had more testing but I can't think of anymore. The anesthesia for the endoscopy I handled well. CT contrast not so much, MRI contrast was fine. I have low vit d (18 at last check) and my ANA comes back negative. An elevated ANA may cause vitamin deficiencies but only because autoimmune is linked to low vitamin d. I have never heard of it causing it. One sign of dehydration is cracked lips but other things can cause it. If you have no other signs of dehydration I would look at something else causing it. Have you ever been tested for Sjogren's?

Not sure where you live but there are clinics cross the US that could get you started. Then a local doctor can continue your care. Some of the clinics I am aware of are Mayo clinic, Cleveland Clinic, and Vanderbilt. I drive 3 hours for my specialist I see a few times a year and honestly having that specialist can be very reassuring. They know what they are doing and don't treat you like a hypochondriac. POTS symptoms can come and go. A lot depends on your underlying cause. I suspect I have had mine since I was a teenager but it didn't get bad til 3 years ago. Since I have been on medication for it I have noticed there are days my HR is fine, but my other symptoms can go haywire. In theory controlling the HR should control the symptoms but it doesn't seem to work that way. At least for me. I would definitely try to see a specialist and see what they say or could do for you.

For my son they had him lay for 20 minutes. Sit for 5. And took it immediately upon standing. Same doctor who said the diagnosis didn't matter, he needed to drink 6-8 bottles of water a day, and ignored the 2 weeks of poor man's data i did at home. Only pediatric cardiologist in my area. He is 15 now so my specialist 3 hours away agreed to test him since POTS can be hereditary.

POTS has an underlying cause. That cause could be your symptoms that don't fit. During my journey of finding out what is wrong with me I have had to do a lot of searching myself. I had a poor man's tilt table done in the doctor's office a few times (they weren't doing it correctly). And as I was searching I came across POTS and originally dismissed it due to the fact I did not faint. Couple months later I was discussing it with my mom and did a poor man's myself and was shocked by what my heart rate did. It explains some of my symptoms not all. Still have a breathing issue 24/7 going on over 3 years straight that no doctor can figure out. I ended up doing a poor man's every day for a month prior to my second opinion cardiologist and I noticed my heart rate was not always 30 bpm difference. Sometimes it was 20 sometimes 50. Either way it was not a normal response. Put me on an actual tilt table and it turns out I do have POTS. My point of this very long post (sorry for the length) is POTS and other dysautonomias are individual. I have a relatively mild/moderate case and there are days were I can't do much. Others where I feel almost normal. Symptoms cycle and it makes it very difficult to diagnosis and deal with. Regarding the pressure in your head I do get that. Had it happen a couple hours ago. It starts at the base up my skull and goes up to my ears. Kind of feels like a pressure change but not quite. Usually happens when I do something over my head for about 2 minutes or so. Effects me for about 30 minutes, if I rest afterwards then it goes away. Also the 30 bpm difference for the POTS criteria is from laying to standing. I have noticed that a lot of doctors make you sit in between for a few minutes and ease up. If it is safe just stand up. It gives a more accurate reading. Watched a pediatric cardiologist test my son (incorrectly) and I just shook my head at her. He goes at the end of October to rule out POTS from my specialist. My specialist I trust to rule it out since he actually seems to know what he is doing. Good luck. Hope you find out what is going on with you.

Insulin seems to be a disqualification due to refrigeration needs. And as far as I know certain pain meds can be done if you sign a statement saying you won't take them 8 hours before driving, have a doctor's note saying it is a stable dosage and have been on it for a while with no side effects, and even then the doctor may still disqualify you depending on the doc. Also blood pressure issues can disqualify you if it is above a certain number and with or without meds. It can be difficult to get approval. Too many things can go wrong if a truck driver has a medical emergency. On that note have you seen the new tesla electric semis? Very cool. It sounds like it may be worth it if you fight. When you get approved they will have to back pay you for as long as you have been fighting it consistently. I have seen them have to do back pay of 3 years before. It may not be a lot of money but it is something and you don't have to hurt yourself to get it. Plus being on disability helps other help options to open up for you.

Have you tried talking to a chiro about the hernia. I have heard of some that can be corrected through chiropractic care.

As far as I know there are 2 medications that can work. Reglan and a compounded medication. My sister in law has severe gastroparesis and is allergic to the Reglan. The compounded medication I think she tried for a month or two but didn't help. They have talked about putting a pacemaker in that would help her stomach digest, but I don't think she ever did it. Did they do the test where you eat the dyed egg and they x-ray your stomach a few times to see how it is digesting? Have they tested you for celiac disease? Personally I won't accept a diagnosis unless there is definitive proof. Too many experiences with I think it is this. Then I react badly to the meds.

At my job we do the DOT medical examiner's certificate for companies and employees. Our PA has every patient do a series of exercises to see if they are mobile. Including standing on one leg for so many seconds and squats. I think each doctor may be different though. I can't see you being able to pass in order for you to have your CDL medical certificate. That being said, sometimes changing a doctor can help. It kind of seems like some doctors don't have have time for their patients and shrug them off. I usually give a doctor a few chances then if I notice they aren't giving me their full attention or at least act like they care what is happening and try to fix it then I replace them. Doctors forget sometimes, but they work for the patient. Not the other way around. Whether it is our insurance or cash that pays them it is still our money. You wouldn't keep a plumber around if he didn't fix what you called him for. I hope you feel better soon. You seem to have had a lot going on.

I don't have those symptoms, but I would suggest seeing a rheumatologist or neurologist. Preferably someone who knows about dysautonomia. Or at least willing to learn. Has a cardiologist checked out your heart yet? I hope you feel better soon. And congratulations on your first baby.

I have taken propranolol. It effected my breathing. So more more of that one. Then I tried a calcium channel blocker. Then they put me on metoperlol tartrate. Recently I did a month of the metoprolol succinate (I assume is is the ER). The succinate didn't work as well as the tartrate but my body reacted the same. Currently I take 25mg. I have no bad reactions. I have gained a little weight over the last year but I don't think it is from the medication. I stopped taking it for a month and was still gaining. My metoperlol was my life saver. It keeps my heart rate down and helps a lot for heart palpitations. It has been slowly not working as well but it has taken over a year for that to happen. We have been discussing upping the dosage.

Have you ever been to a chiropractor?

Do you guys take midodrine as well?

I know it sounds weird, but I am noticing goosebumps in direct sunlight. For example if I have one arm in sunlight and one out of it, the one in it will have a goosebump sensation. Like the hairs are standing on end. It can even happen on different parts of the same arm. It reminds me of the tingling sensation of my scalp that my midodrine gives me. It happens in other places as well. Like one cheek or the shin area of one leg. It does not have to happen on both sides. Curious if anyone else has this issue. Most of the time I think I am on my midodrine when it happens but I am not sure. I am going to bring it up during my next doctor appt but for now I figured I would ask.

That is an interesting question. Not sure if bad spine could cause it. I don't see why not though. Maybe someone else has come across that information. The sitting can cause symptoms. Sitting can cause blood pooling away from your head and/or heart. In the beginning I would have issues sitting without symptoms. I would talk to your doctor in case it is something else though.

Interesting information. Thanks. I may have to look that up for more information. Sounds like an interesting read.

And that is why I think I need to have a diagnosis for many things, not just one. From my understanding there is a "little blue book" that has the approval for certain conditions. If you are in there then it is easy. If not then you have the prove that you are disabled.

I have heard the judge can make a difference and even have a lawyer does too.

It sounds like you found a good doc. They are so hard to find.

Is "sticky blood" the same thing as "thick blood" ? Curious because it was something my grandmother said she had and medical terms was not something she liked to use.

That is what my sister in law had to do to get hers. But I am hoping if I have everything documented I won't have to go through the long process.

Have they ever tried a 24 hour Holter monitor?