Matter Of Time Til The Word I Was Dreading To Hear

[Bigskyfam]

Went into doc today. Gyn. And she said the one word I didn't want to hear but have heard you guys mention.

Anxiety.

Ugh. Really?just because I cried in my appt. I went into rule out gyn issues versus pots as I just had my iud removed and was having worsening pots sx. So my body is a mess.she didn't know a thing about pots. Appt with doc on wed. Hope that goes better.

Question... Do we as pots patients need to treat the "anxiety issues"we have. I really don't know how to word this the way it is in my brain

[gjensen]

I would not put a lot of stock in a doctor using the a word unless they had experience with dysautonomia.

I am consistently amazed by doctors refusing to diagnose something outside of their specialty. Except anxiety. They are quick to pull that card out, and many(frankly), are not qualified to do so. I told one if he was convinced that was the case, to refer to me a specialist and let them diagnose me.

I had another mention that I appeared anxious. My reply was that he would be to, if he was going through what I was, and could not find a doc sharp enough to recognize it and deal with it.

I am afraid that will have to be a decision you will have to make. If you feel like you need help with it, then look into it. No shame in it. That becomes part of this for some of us. It has for me. I did not have an anxiety issue before this, but I do now. It just waxes and wanes with the rest of my symptoms. I have hard time waking up without feeling over stimulated.

If YOU want and feel like some help would be helpful, then it is something to be considered.

Many of the standard POTS treatments do calm the system down. Beta blockers, clonidine, etc.

I can't speak on the challenges women have. Just do not get too worked up over hearing that stuff. This illness can be frustrating and unnerving, as you know. It can get to the toughest of us.

Hopefully the Wednesday appointment will go better.

[Katybug]

I think you need to trust yourself on this subject. I have inappropriate adrenaline reactions to certain things (most of which are predictable at this point) but I don't have anxiety. These reactions may look like anxiety to someone with an untrained eye but that's just not what it is. That being said, I believe it is completely possible to have POTS and anxiety comorbidly. And, I think doing a self inventory about how one is coping with a chronic illness is valid. Nonetheless, I am very laid back most of the time, sometimes to my detriment as docs don't always realize the extent of my disability, but I do have some physiologic reactions to things that are more exaggerated than what a healthy person would have such as severe adrenaline rush when a car cuts me off.....I also get extremely short of breath going up the steps but no one is accusing me of having COPD. Just for comparison. ;-)

[blueskies]

And once there was no POTS -- it was anxiety.

And once there was no diabetes -- it was anxiety.

And once there was no asthma -- it was anxiety.

I'm sure a historian of medicine could add to the list of 'and one there was no....'

To those doctors who told me it was anxiety at first I believed you. Now I'd like to say to them 'Fool. Who wouldn't be anxious having an illness that no one can fix but causes such physiological and psychological distress?'

blue

[looneymom]

Don't fret. As a parent, I could not stand this word mentioned in a doctors appointment. However, I started saying to the doctors, if you had been sick for a long time and wonder if your body was ever going to function again like it once did, Would you not have a little bit of anxiety? (sorry for run on sentence and question) With this comment made, you can tell what a doctor's true intent is toward your treatment. Doctor's are human and if they have not experience anything simular to what you have gone through, it's sometimes very hard for them to understand. Eventually you will fine a doctor that will connect to your situation.

My son does take Zoloft, which does help with anxiety but it also has a few other benefits. It helps with blood flow to the front of the brain. It helps with brain fog, concentration levels, moods, and I would not let him go without it at this point. So don't feel bad about asking for something to help relieve some of these symptoms. Your body has a heavy load of stress beyond the illnesses itself. As patients of this disease, we are the teachers of these symptoms of POTS to our doctors.

Try to stay calm and it does help if you bring someone else to the appointments. My husband and I always go to new doctors appointments because I have had the experience when the doctor wants to blame it on the patient or caregiver. This is not a fun experience, so I do feel for you. I have found things seem to go better in an appointment when someone else can also relate to what is going on. Like gjensen said, if you feel like you need something to help you deal with some anxiety, I would find a good doctor to help on this end of the deal. It's nothing to be ashamed or embrassed about because a chronic illness can cause this problem. Hope you appointment goes better on Wednesday and keep us posted.

[jpjd59]

This is so common. When the doctors have no answers it seems they use this term so that at least they can give a diagnosis (instead of saying "I don't know"). I can tell you that I have had a lot more respect for the doctors that have told us "I don't know" instead of trying to label the problems as anxiety.

[Chaos]

I remember having a similar experience early on in the disease process. I started crying at an appointment simply out of frustration with everything that was going on and had been going on for months with no help available. I was also having a really hard time breathing just from the effort of trying to get to the appt and walk into the building and my HR had been super high. Of course that immediately got me labeled as both depressed AND anxious. Since I couldn't breathe, I certainly couldn't tell the doc what a total jerk I thought he was.

That was however the last appt that I ever went to by myself. Now I always try to take someone else with me so they can be my advocate if I'm not having a good day or am too brain foggy to communicate effectively.

As far as treating "anxiety", as others have said, it's personal but for most POTS patients treating the POTS symptoms will likely treat the "anxiety" symptoms. I had been put on anti-anxiety meds early in the process but when I saw a POTS specialist he took me off of them and I felt much better for it.

My personal feeling is that people have different ways of "expressing" this syndrome depending on their genetic makeup. For some that expression will be more toward anxiety and emotional symptoms. For others it will be more toward physical symptoms. Either way, we just need to treat the underlying imbalances that are causing the problems.

Good luck with your appt. Wed.

[Bigskyfam]

Thank you guys. Each and everyone of you hit the nail on the head in so many ways... I appreciate the analogy as well. So true. We know our symptoms bc we deal them everyday. My hubby will be going with me on wed. I don't think it helped that my docs office(gyn) is also my coworkers. After reflection I don't feel I am depressed or anxious and can still find joy in this new norm. Yes I think some of symptoms appear anxiety ridden. That's been the catch for me. Thank you guys so much for being there, sharing and giving hope. As a newbie I hope I can contribute as well.

[yogini]

There is a certain amount of anxiety that results from chronic illness. Some people with POTS have anxiety in addition to their POTS. However, as most people responded, doctors often assume complicated patients have anxiety, just because there isn't an easy explanation of symptoms. Drs are trained to treat clear cut, well-known conditions. When something outside of the box like POTS comes along, the drs don't know what to do so they blame the patient.

If you went to a psychologist/psychaitrist for mental health issues and that dr diagnosed you with anxiety that would be one thing. This is really out of the OB/GYN's area, so I would not pay that dr any mind. You should think about whether it even makes sense to go back for another visit.

[Bigskyfam]

Agreed. I'm going to seek counseling. It's helped before... Gyn will be dealing with my menorrhagia issues. They are suggesting hysterectomy. Which is a big issue for me because of my pots diagnosis. Lots to think about.

[Lethargic Smiles]

What I did (this was prior to being diagnosed with POTS) was go to a psychiatrist and had a depression and anxiety assessment performed. I figured there was no harm in going since I knew he was trustworthy based on a friend's experience with him.

He assessed me and concluded I do not have anxiety or depression. When I experience anxiety, it is about my health interfering with my life which is a normal response. He suggested perhaps I'd benefit from therapy just to manage stresses since I'm so ill. I did come up as having depression if you looked strictly at the scoring, but he said he would never diagnose me with depression because the reason I scored high was an inability to do activities, but I have no loss of desire to do activities I used to enjoy and I still enjoy them when I am able to do them. Depression is about a loss of desire and enjoyment in addition to a decline in the frequency of socializing/hobbies/etc.

After that, when I went to a doctor and s/he suggested depression and/or anxiety, I could say, "I understand why you may think of depression or anxiety given my symptoms. Other doctors have shared your concern which why I got an assessment performed and I was determined not to have either of those conditions. Since we can rule those out, what would be your next suggestion?"

[Lethargic Smiles]

Also, have you done a poor mans tilt table at home? Lay flat for several minutes, take your pulse, then stand and take your pulse every minute or so for ten minutes (if you can stand that long). If it increases 30 beats or above 120 within that timeframe, you can use that information to support your suspicion of POTS.

[Katybug]

Bigsky,

When we (potsie women) have talked on past threads about our pots worsening with our hormonal fluctuations, we did seem to conclude that this is another issues that varies by person. Some of us, like me, can't handle times (or birth control) with high estrogen. Others seemed to do better with higher estrogen and worse during the estrogen drop in their cycle. I mention this because I know a lot of women are supplemented with what amounts to just estrogen when they have a hysterectomy. I'm really just thinking out loud here, but I wonder if the gyn can help you figure out what part of the hormone cycle is causing your symptoms to worsen so you can target that especially if you are going to go for the hysterectomy.

[Bigskyfam]

Jackie. Great ideas! Get that anxiety business off the table. Great way to be proactive. I had a TTT test that confirmed pots. But haven't been able to go to a clinic for sub typing or further testing.i am many states away from specialists and autonomic clinics. None of the docs here that I've seen will do any other tests like norepinephrine levels,etcetera. My heart rate went from 80 laying to 160 standing within 5 min then crashed to 60 quickly upon laying down.

[Bigskyfam]

Katybug,I've got a great gyn. She is the one that sent me to cardiology in the first place. I hope we can discuss what you suggested... Hyst is my last option. I've tried one ocp, then the mirena iud. I had mirena inserted last year springtime and developed pots crash in October. Reason unknown. Not sure how long I've had sx.... Mono at 22. 3 c-sections. I wonder if keeping ovaries would make it worse or better.

[Katybug]

I can't imagine this hasn't come up but I just remembered that somewhere along the line, I read that endometriosis is a differential diagnosis for POTS. Just thinking out loud again. This hormone stuff only complicates an already hard to manage problem. Geesh!

[Bigskyfam]

I need to search the forum thanks for thinking "out loud "

[TCP]

I have ANXIETY stamped across my medical notes. When a doctor doesn't understand or know what to do it's the word to use. Like I have ME but in the UK the government have listened to psychiatrists and psychologists who have claimed ME as their own and now label it a personality disorder: anxiety avoidant personality disorder, despite all the proof of it being a physical illness.Now if you are chronically ill with a condition effecting the nervous system there will be a certain amount of anxiety but this comes from having a very sensitive nervous system and for sufferers fighting for recognition and treatment when they feel very unwell. Doing therapies does help calm the system but it isn't a cure or treatment for the underlying problem.

[Bigskyfam]

I work in the medical field and for the first time I'm requesting my records. Intriguing how different care is in other countries. I like how you stated sensitive nervous system as we all see differences to others reactions physically and emotionally . I'm off today to work 8 hrs and attend my appt. taking you guys with me. Thanks for your support

[Aeris5000]

Good luck with you appt, Bigskyfam!! Glad you will have your hubby there to have your back.

In my experience with POTS, all the specialists I've seen went right for the POTS diagnosis. All the internists I've seen all suggested anxiety. I don't know who to trust, really, so I'll have to trust myself. I know I have anxiety for sure, about real-life stresses. My mother is agoraphobic and has panic attacks in certain public places. I like to tell myself I just have anxiety, but my TTT was positive for POTS last year. So I probably have both, which feed off each other. My neuro thinks I have had POTS for a long time, but if that is true, other than having a fast heart rate with exertion, I had no other symptoms. So I do believe anxiety makes me feel worse. I am dizzy almost all the time, but not the same dizzy I think POTS patients experience. It gets worse when I am anxious. I work in cardiology and whenever I stumble across a patient with POTS, I freak out. I know some of my anxiety is related to feeling ill all the time, but a lot of it is about other things, ie. irrational fear of driving on the freeway, not meeting social expectations, stress at work/home, etc.

[Bigskyfam]

Aeris... Working in the medical field is challenging I think. I think my coworkers see me as a coworker not a patient. That is frustrating. My family sees my symptoms. I've always been a little on the non adventurous side. I think it was my body's way of saying something's not right. But stopped me cold last October because I wouldn't have listened. Work has been such a challenge bc I'm not hitting the marks I should be physically and mentally. No one is reaching out to say how is this going...

[Bigskyfam]

Appt went ok turned out to be a phone consult as my doc was on call. Understandable. I conveyed to her my thoughts. I'm glad she sees me as a pots patient even though not her specialty. She will be looking into pros and cons of surgery/ anesthesia and we will meet again end of month. I told her I felt kinda put off from other specialties as I've gone in paid my money and not gain too much. I know they aren't pots specialist, but my goodness... Can they research or collaborate with other docs? When do you know it's time to find a new doc?

[gjensen]

BigSky, that is a good question. I suspect that I will be looking for a new GP. I have seen him three times and he gets me no more now than before. I do not have time for that.

The cardiologist that referred me to Mayo set my appointment for 6 wks after the Mayo appointment. If not for the Mayo trip, I would have been ok with that. I just tend to feel that with him being the referring physician, he would be interested in the outcome. To me it is a red flag, and revealing.

I read between the lines. I do not listen as much to what somebody says as much as pay attention to what they do or do not.

All I need is one local doctor that is interested. Just one. Someone to help fill the gaps.

It is not that I do not think they are interested, it is that they do not know. My thoughts are . . . . find out. I did. They do not have to be an "expert", just try to understand. A doctor that looks into it, is interested. One that does not, is not.

I am not going to make any rash decisions at the moment. I am going to finish Mayo. I suspect I will be looking again. I will express my concerns first and judge the response.

[Bigskyfam]

Remember the Atari game pitfall? I feel like I'm swinging on the rope over the "pits". Those pits or gaps seem to push me back a few feet. I get what your saying and I'm so happy you are going to mayo. Eager to read your posts with experience and knowledge learned

[blueskies]

Hi,

I do have anxiety issues. What came first -- pots or anxiety -- no-one would be able to work out. I was labelled years ago as having panic disorder. So I did a cbt course run by a major hospital and the result was that for nearly 2 decades I learned to 'challenge' my symptoms of anxiety which were really symptoms of undiagnosed pots. I ended up tired and dispirited and also very ashamed that despite all my hard work each day I could not get rid of the 'panic disorder.' Then the symptoms the docs could see started to show up and finally I was diagnosed with pots. But the years of misdiagnosis of panic disorder had done some real damage. I no longer trust my instincts and question myself quite a lot. I no longer trust my own judgement when it comes to 'am I sick today?' 'how sick am I?Sometimes, 'am I sick enough to need to go to Emergency?' Last time I went to emergency was about 5 plus years ago (bit hazy about exact timing) I was sent there by my GP. Years earlier I would have known that I needed hospital care but that had changed. I turned up at emergency experiencing non-immune anaphylaxis. Now, I might have been okay, in the end, if I'd stayed home but this is anaphylaxis and I may very well not have been okay. But the rule of thumb is if you are experiencing a strong allergic response go to freaking hospital. I had lost confidence in my ability to know what was truly something that needed to be treated. I received treatment -- twice -- after the first round of treatment they had a good look at me and told me I'd probably be fine to go home in a couple of hours, I looked and felt okay. Towards the end of the next two hours the anaphylaxis repeated itself and I needed a second lot of treatment. I just thank heavens that I went to the doctor. And part of the reason I went to the doctor and didn't stay home worrying about it was that my husband came home and saw me and observed what was happening to me for all of 5 minutes and said he was taking me to the doctor. I was shocked. He's not easily ruffled by medical things.

I guess what I'm trying to say is that the misdiagnoses of 'panic disorder' sent me down the wrong road of treatment and now it has really stuffed with my ability to know 'is this serious or not?' which can leave me in a very anxious place for a lot of the time. So yes, I do have a lot of anxiety but it comes WITH pots. flight or fight response -- sympathetic nervous system etc. etc.

I do have a psychiatrist and about 6 years ago -- 2 years after my pots and erythromelalgia diagnosis -- I rang him and asked him if he thought I had a somatoform disorder. Was I a hypochondriac? Had I worked myself into such a state with anxiety that I'd manifested the symptoms of a physical illness? He asked for a few days to think about it. He rang me back a few days later and told me that it was his opinion that I did not have a somatoform disaster (btw, I think they've changed the name of 'somatoform 'to something else in the latest edition of the psychiatric manual) and that I had pots and other stuff but that I was understandably anxious and depressed about it.

That being said, I've decided to seek out the help of a psychologist who works with people with chronic illnesses. I need to work on feelings of anxiety that surrounds being ill, I need to work on the sense of shame I feel, and I need to work on the feeling that often I feel like a helpless hostage to this illness. In other words I need to get my happy back and work out how I deal with the anxiety, and subsequent depression that has come from being unwell for so long.

blue