How To Not Be Scared

[Joann]

So this is one of my problems. FEAR

I have been feeling extremely bad again. I haven't felt like this in a long time. I wasn't cured by any means but I was able to do many things I hadn't been able to last year. I would avoid certain things and would still have some bad days/weeks. But now I am really getting bad and I am getting scared that this is more than POTs.

Yet, I have to wait to have things checked.No one seems to really care, how freaked out and in pain and limited I am. I cannot bend not even a little and I get bad pain, below my right rib, more near the sternum. The pain has one spot that is intense but it spreads to the whole area and also my back in that area. When this happens my blood pressure skyrockets. Yes, I know it could be from the pain. But this continues for hours, and sitting will make it worse. I get sick to my stomach and just feel overall awful. I usually have to lie down. Yesterday, lying down wasn't helping as much.

Today, my husband drove us to a store about 2 miles away, the drive seemed to cause me problems and then just pushing the cart and putting stuff in cart made me feel bad. So now I can do very little. I got out of the shower and even walking seemed to cause some pain. I am making my self keep walking, because I am scared I will end up like last year and not be able to even sit up.

I get scared its an anueryism, an organ ready to burst, a pheo tumor. I just get plain scared. I have tried finding some meditation sites and try to calm down, but then it will happen again and I freak.

How do you deal with the fear and pain? I am a very educated person, I know fear is not helping me, but I just can't get a handle on it.

I wish I could just go to a hospital and ask them to figure it out, but as we know that is not how it works, i will only have that happen if it gets even worse.!

[SnowDrifter]

I'm sorry you have to go through this. From the bottom of my heart. I really am.

I will admit I'll get some bad episodes that make me freak out a bit too. It's no fun. I keep reminding myself "It's just pots, Chris. How many times have you gotten yourself worked up and got over it a week later?"

PM me if you ever want to talk. I've gotten pretty good at talking myself down from panic attacks

[SeattleRain]

You sound just like me. I'm glad to know I'm not the only one.

I'm so disappointed in the way doctors go about providing care to patients.

If you're worried about Pheo, get a 24 hour urine analysis. It's a relatively cheap lab test so it's much easier to get approved. You might want to get your blood cortisol levels checked if you haven't already, too.

Past that, good luck getting a doctor to refer you for an MRA/MRI or CT/CTA. They are so anal about these tests. I've told every doctor I've been to that "Hey, if you have a problem with justifying this to my insurance company, or you think maybe I don't have this and I'm just paranoid, I will pay for the testing out of my own pocket - all $4,000 of it. I want the test". And they say "ethically" they won't, because they have to agree with me to refer testing.

I try to rationally explain to them the simple thought process behind why I could very well have aortic dissection and they want to hear none of it. It's almost as if, because it was my idea, they have to get defensive and before even knowing what's wrong with me, tell me that I don't have it. "You worry too much, you don't have aortic dissection". Amazing. I present nearly every symptom of chronic aortic dissection. The initial attack I had, lo and behold, is known to cause aortic dissection (intense valsalva). Yet, somehow, my doctors intuitively know that I don't have this or that wrong with me.

I'm rambling now but you get the point. I dislike doctors and their narrow minded thought process. I feel like I have to buy an MRI machine to get an MRI. It's pathetic. More money is lost from my own pocket and my insurance companies in ER visits and repeat echocardiograms than would have by giving me the stupid tests that I want, which at a bare minimum, would have given me peace of mind.

[MomtoGiuliana]

I understand your fear. Sometimes POTS symptoms can be quite intense and strange and of course it is hard. I think people who have never dealt with this don't understand. I find that focusing on breathing can help. I also can call my specialist (or his nurse, or at least a cardiologist who is a partner) and describe symptoms. Typically this helps give me peace of mind, even if my symptoms are still disturbing.

[bebe127]

Joann,

So sorry you are still dealing with this. As you know, and you have written, fear can exaserbate things. I had a really hard time at first with fear, and still get intense fear at times still, although I don't have the same symptoms as you. Are you on any type of anti-anxiety meds, if you don't mind me asking? I'm on Xanax .5mg 3x/day and I take a double dose in the am if I know that I have things to do that are going to exaserbate my anxiety. For me and my situation, it has been a life-saver (not advocating as a magic pill, just telling you what has worked for me, and everyone is different). Before the meds. all I could do was try to relax by singing a hymn or song over and over and reading comforting verses over and over. I have a book called "The Anxiety and Phobia Workbook" by Bourne that has helped tremendously, even though I don't have true anxiety or phobias (it's all due to a whacked out ANS) , it still has some really good suggestions.

I do hope you get some answers soon. PM me if you want to vent or just talk.

Well wishes going out to you

Hugs,

Bebe

[Joann]

Snowdrifter- thanks and I may take you up on pm you.

Ryan- last year they did do an ultrasound of the area to check the aorta. My father and grandfather both had aortic anueryisms. My dads was caught in time and my grandpa had two the first was fixed, the second he chose to die from, he was in his 80's and refused to go thru another surgery. The surgeries are pretty intense and back then even more so. So anyways, even though these are more often in males, I do have the family history. They say that it looks fine. Now some people are telling me if it was dissection it may not initially be seen. The only good thing, is last year it was really bad, but I had gotten somewhat better. I don't think it would get better, but maybe. I have had a MRI/MRA of my head/neck recently that showed nothing. At the time I asked them to do the back also, since I have scoliosis and wondered if maybe that could be pinching on something. But they said no.

Last year I did have the 24 hour urine in the hospital (a 4 day stay) and I did have some high values, but they were not double or triple the amounts so they said I needed further testing. Now I did have an MIBG scan last summer and the techs felt I was going to have answers, but when the report came back they said inconclusive, that the high uptake on the adrenal glands may or may not be something, Then the CT scan, and they said no. Months later, when I was doing better I had a blood test which they said meant I didn't have one. But. I thought I had read that if you are not in a flare it may not show, it has to be while you are doing poorly (like now). I do wonder about this. Because my triggers are stairs, cannot do them at all! Bending, now that had gotten better, but now no bending. Try living without bending. No fast aerobic activity (running, jumping, etc...) And lately the action of siiting and sometimes getting up and now any car rides, makes me think something is being crushed/irritated whether pheo or some thing else. I wish they could put you in the hospital and just run all the tests. Also when they want to fool around with your meds, they should have you inpatient or have some one with you. The hospital that did the tests only do about 12 a year so I want another doctor to look at the results. I planned on getting them Friday but then had a huge episode that was brought upon by putting my daughters clothes away. This was something I could do one month ago today!

MomtoGuiliana - I have been re-trying the breathing and meditation. And I wish I had a doctor/nurse that I feel is helpful. If I call the cardiologist I have been seeing lately, they will say go to ER or try this new med. One nurse said they usually send patients like me out, when I asked what she meant she said they don't know what to do with us and send us to Dr. Grubb or CC or.... My primary said she has no idea. The CC doctors are hard to get a hold of and I think they were hoping for a clear POTS diagnosis and now are not sure where to go, I have told them I need some help no matter what. If I had a doctor that I felt was in my corner that would be so great.

Bebe, - Thanks I used to take ativan but it didn't seem to help and I figured why muddy the waters so its been over a year since I have had it. I was wondering about xanax. I also called a therapist to talk about the chronic pain/illness and fear. I am suppose to see them later this week, I have read all of the panic and anxiety books in the past. About ten years ago I had a bunch of physical symptoms that were ruled panic, (now I wonder) so I went thru all of the books, therapies, etc..

Last night was the worse in a very long time. The neighbors were in the backyard watching playoff game on big screen and I was trying to visit even though I felt terrible. I went with one neighbor to her house and she has 3 steps, one steep and I swear just going up them triggered my bp and heart rate. I started to get left sided chest pains. I breathed deeply and the rest of the time I felt worse and worse, with my back hurting me. Finally I went in the house and took my bp it was 140/101. The 101 scared me and I told my husband I was sorry and I had to go in. It went down while I got ready for bed to about 130/95. But pulse rate super high too. My back was killing me. It could be some messed up nerves but I keep freaking its a dissection or heart attack. Crazy i know but. I am peeing vast amounts that are more than I am drinking. I got up at 3 a.m. and when I went back to bed I knew it was bad so I took bp standing and it was 156/97 heart rate 115. Just from out of bed! So I took an additional 1/2 beta blocker that I was told I could. I felt terrible the rest of the night but taking my normal dosages in the am and lying down for a while it has gone down some. But I feel awful. My back is aching burning in those spots, if I bend I get intense pain, in my upper abdomen and back. and I am having some pain in my hips too. Just making pancakes which takes about an hour caused that. So I am sitting in my front room not sure what to do.

My mom says too much sitting maybe causing my body to decline, but I have been going out walking. She feels this isn't enough, but when I ask what I can do, since anyother stuff sets it off. She has no clue. I have a twelve year old who I am trying to not freak out in front of her. My hubby is not home, so I am just praying it doesnt get worse.

Sorry this is so long. I just feel like I have no where to turn. Even if I have to go to ER the close hospitals are little and don't know what to do. So do I drive an hour and will they even do anything.? I am trying to wait out the holiday weekend but wonder why, cause who is going to help me then? Did I tell you this, my sister in law who lives far away told me to look up a "certain" religion to use mind over matter and to get a prescription for marijuana!

[MomtoGiuliana]

I'm sorry you are in a downward spiral right now. I have experienced that as well-periods where my symptoms get worse and worse. It sounds like you need to find a specialist you can be under the care of, even if they have to be far away. I think it is true that for most of us, too much inactivity makes things worse. I know that too much lying down doesn't improve things for me. Easier said than done. I hope you have some friends or family who can support you.

Dr Andrew Weil has a book called Spontaneous Healing that includes breathing techniques. I loved that book and found it very supportive when I was going through a difficult period 10 yrs ago.

[Joann]

Thanks I wish a bunch of us on this site lived near each other. Misery loves company! No really, to have someone who understands what we are going thru and to be able to help each other during our bad times.

I know once I find someone who can figure out what is going on I will feel so much better. I mean even if they can't cure it. To know why something is happening and/or know what to do when it happens, what to avoid. That would be such a relief. Right now, I am stumbling in the dark. Never knowing if anything I am doing is actually helping or hurting. I try to think back at what worked last year and I don't really know. The meds must have helped. Maybe the vitamin d and vitamin b12 (maybe not though). The only thing I do know is to continue to drink and try and force myself to eat (I have not done well with this) and keep walking short distances many time a day. And keep hoping someone will help me figure this out.

In the beginning my husband didn't really believe I was that bad, then he knew it, but just figured I would get over it. His was of dealing was denial and leaving when possible. Now he has become much more helpful, but still cannot cope with the bad times. I wish I had his positivity, he always tell me that the doctors will figure it out. They just need time. Well I have given them plenty of time! I do have an appointment with Dr.Grubb's office, but that will probably not be until fall.

[bebe127]

I know it's hard, but hang in there, my friend!

Sending {{Hugs}} your way I wish they were the real type. Chin up, things just have to get better!!

Bebe

[Dizzysillyak]

I haven't read all of this but from the first post you're describing my gall bladder pain. Pain can be refered

tho so it's hard to say. I once had a kidney stone stuck right outside my kidney and had pain to the

left of my belly button. No where near the stone.

I'm assuming you've been to the er for this. I've found er docs to be more competent when it comes to dealing with pain.

And several other areas. You just need to be calm and clear about your symptoms. I don't try to dx

myself because I suck at it. Lol. Cat scans, labs, etc run when you're having these symptoms is the

best way to get answers. High bp can just be from stress or pain and not connected to your problem.

Fwiw, I'd change doctors too. Any doc who ignores symptoms isn't looking out for you. Hope u feel

better soon. D

[Joann]

Dizzysillyak- I do have an ultrasound scheduled for Wed. But they are only looking at gallbladder and liver. I wish they would just look at the whole area.

I have been to er, but it was before I had the pain below rib. When this began, it wasn't so obvious. I would just start to feel sick, the whole area seemed to get a pressure sick feeling and then i would feel nausea, hot, and bp and heart rate would increase. It would happen when driving, noticed side street worse (bumps probably), going from sitting to standing and vice versa. Then sitting sometimes would trigger it. With Pots I would have problem with getting up, but this was the opposite and pain is in back and upper ab. So anyways when I did go to ER they checked for heart attack and nothing else.

I had someone tell me I should just relax and drink a beer and I would feel better, another told me to get some medical marijuana. So I guess they feel it's all in my head. I wish there was a magic pill or drink that would make me feel better

[Dizzysillyak]

From my experience I can tell you that gall bladder pain, severe digestive pain and kidney stones

hurt worse when sitting up. Actually, my last kidney infection was so bad that I could only lay down

at an angle on my left side. My whole right side was inflamed.

ER doc thought it was appendicitis but was smart enough to order cat scan. : )

Imho, You need to go to the ER when in pain. So many chemical levels and inflamation markers change quickly so something could be missed.

Fwiw, I'd skip telling them your orthostatic intolerance symptoms when you're trying to get your pain addressed. It will only confuse the issue. Bp and hr change during times of illness.

Hope you get this figured out. I had to drop two doctors because they ignored my kidney stone

and severe menstrual problems. I've never regreted it. My next doctors recognized these doctors ignorance.

Tc ... D

[Joann]

Well made it to the ultrasound today. Technician wouldn't say anything, just if there is anything seriously wrong they tell doc right away otherwise 3 to 5 days. So....

She did say I was a great scan because I am so thin and tiny. Also said my gallballer was extremely small. Asked if I had eaten. I said not since last night and she said she asked because normally the gallbladder isn't that small except after you have eaten, but maybe just because I am so small.

Otherwise, I bet they will say nothing wrong. My dad took me to grocery store from their. Just pushing cart thru store gave me pain in back and sternum area. He told me it was just being weak. My muscles he said. But wouldn't I be out of breath and the pain is more like pressure and pain, doesn't feel like muscle or bone pain. When I told him I worried it was cardiovascular he said they would have found that by now and maybe I should try a sedative. Oh, was I mad and hurt.

I am scared from being in so much pain and mad I am so sick of hearing mean comments.

[looneymom]

This is so hard to deal with and I wish I could reach right through the computer screen and give you a hug. My son has complained of lower back, hip, and ankle pain for a long time. It's very frustrating to hear a family doctor says it's just part of POTS and it goes with the territory. You'll just have to deal with it. It's really hard to do exercise when you are in pain all the time. My husband and I decided that it's time to start digging for more answers and our cardiologist has agreed since my son has not made much improvement with first year medications.

This last week, we finally got our family doctor to take an x-ray of lower back. Everything is fine. So now we are wondering about fludrocortisone and salt loading. Next week, my son will be seeing the cardiologist. Our cardiologist is going to be running blood work for AAG and some other autoimmune disorders. Medications will also be discussed.

How long have you been on your current medications? Could they be causing more problems? I would encourage you to go see the doctor that treats you for your condition. If this doctor, has given up on you, then it's time to fire them and go find another one.

Just speaking from experience. I know the fear that you express, because it is also my fear. My son was bedridden for several months last year ( 2012) and I was afraid that was going to happen after a double round of flu this last January. However, his body is nowhere near the level of functioning as it was before. He still works with a physical therapist and she is quit puzzled by everything. He shakes, has tremors and does not sleep through the night yet.

I have to keep reminding myself and my son that is will get better. I keep him distracted as much as possible. We concentrate on things that he can do and try to keep stress on the low end. The most important thing is that you learn to cope and to be flexible with your health condition. Find a doctor, that's willing to look for the underlying cause. Family and friends will have to accept your limitations. Don't let Fear over take you. Fight for your heath and be strong.

[Joann]

Looneymom,

Thanks so much, I read this on my phone last night and I felt your hug. My phone is old school so, I can read things but not really respond.

I feel so bad for you and your son. I have a 12 year old daughter and when I am feeling bad, my very worse fear is that she will get this. I cannot imagine what you are going thru and what your poor son is. I am sure you have been everywhere, but if you haven't make sure you try one of the children's hospitals and the pots specialists. I thinks some of those children's doctors have some great compassion and drive even if its not their speciality.

That is what I am looking for myself a doctor that really wants to help me. I feel like so far, I really have not found one doctor that is in my corner. I am giving the doctor who is in charge of my case one more try this Tuesday. If I feel like she is not listening to me. I will be back to square one, lookiing for someone else. I know I may get a bad rap of doctor bouncing, but this is 20 months of my life gone.! My daughter says she doesn't remember me active. (which I think she is exaggerating). So the first ten years of her life, I took her and did everything with her. And I planned to do so much more as she got older. And now, I am lucky if I can go to one of her ball games! Let alone being able to practice with her or even take her to practice.

Sorry forgot this is not an email. But I did just start seeing a therapist who deals with chronic illness and pain issues, we are writing a plan/goal of how to deal with pain, illness, fear, goals and dealing with unfeeling people.

And yes I do feel my medication may need to be changed.

I hope your son starts feeling better soon, and you find someone to help treatment.

Thanks for all of your kind words and encouragement.

[Guest Hanice]

When you have pots (unless your on drugs) your gonna be afraid every minute of your life for your life. It ***** so hard I know. I also am a mom, I dont take meds (only an herb capsule called Valerian) my kids are 1 & 2 and Im scared that I will black out or die while Im cooking while my husbands at work and then my kitchen would be on fire with my kids in the house and I fear for my kids so much. I used to be able to take them out everyday and now Im scared to even be alone with them at home. Its scary.