Psych Diagnosis Along With Pots

[Maxine]

They tried too, but I think changes in the office prevented that.

We need to watch out for eachother, and hopefully we'll be OK.

Unfortunately when you think someone is watching out for you, they're actually contributing to the problem--

I'm so sorry you had to deal with them getting back at you-----how immature. I hope they learn it will burn them some day.

Just stay true to yourself, and don't worry about it too much. People who are like this only get away with it so long, and it comes back to them-----sometimes worse then what they dished out.

Keep your chin up dear.

BIG HUG,

Maxine :0)

[jump]

This is a little off-topic now, but in regards to the initial post, I just wanted to say -- eep! Remeron is contraindicated for POTS, OI and other autonomic disorders. No wonder it made you feel worse!

[futurehope]

This is a little off-topic now, but in regards to the initial post, I just wanted to say -- eep! Remeron is contraindicated for POTS, OI and other autonomic disorders. No wonder it made you feel worse!

Yep! I was stupid enough to stay on it for 4 months. I had to walk around with a cane as I was totally insecure and felt that my dizziness would cause me to fall. That drug did more harm than good.

I would not be surprised to find that in the future someone will realize that some medicines and/or immunization injections harmed people and contributed to their declining health.

One other post mentions how if you have a defective gene, some drugs (metabolized by that gene) should not be taken.

We are our own best advocates at this point.

[vemee]

After rereading my post I realize I never made the point I had intended to make, instead I went off venting about the negative things that have happened to me and I apologize for doing that.

I do believe that medical doctors use the mental health diagnosis too much and that it is an easy out for them. We get pushed onto the psychiatrist who has to assume that the medical doctors have done a complete job of eliminating all physical causes of a problem. I was trying to say that I got involved with mental health because "nothing was physically wrong with me". My psychiatrist was always there for me and supported me, when pots started to get severe we discussed the fact that the medical doctors would claim I had anxiety and nothing was wrong. He decided to treat me for anxiety so that if the symptoms persisted then we would know that there was a physical cause. The sad thing is that even with that preparation the medical doctors refused to accept that it was not anxiety.

[Maxine]

Many psychologists and psychiatrists will actully help in a physical diagnosis, as they rule out the "anxiety" or "depression" label some of the MDs put in patient medical records. The psychologist I saw early in my illness knew something was physically wrong. She noticed muscle wasting and weight loss, and said this should be a no brainer for docs, but unfortunately it doesn't always help with every doc.

In my case it helped, and it also helped that I saw another psychologist who specializes in chronic illness who was actually recommended by my ANS doc. He was very compassionate and understanding, and was a great boost to my confidence. Another very nice doctor was my general surgeon. She is one of the most kind and sincere docs I ever met other then Dr. Grubb. She told me I was a very strong person mentally, and that dealing with everything that I have been diagnosed with would be very hard on anyone.

I have good stories too, and many docs have helped me a great deal. Some of them just don't know what to do, as this can be overwhelming to many PCPs. I had to advocate for myself, and fight to find the good docs. Even though I was stunned by the rude and abusive behaviour in the medical community, I have also been blessed with some wonderful experiences.

It's unfortunate that many patient's care has been hindered by having either a co-existing psychological diagnosis, or a misdiagsed psyc diagnosis. Some physicians can't look past thier EGO, and become threatened by a patient who knows more then they do. They end up slapping a psyc diagnosis on you, rather then just ask questions and learn from you. A good doctor learn from thier patients.

It's important to look at the medical information in a patient's file regardless of any co-existing psychological problem. Both problems need the appropriate treatment, and most importantly-----respect.

Maxine :0)

[Brye]

Reading all these posts on this topic make me SO THANKFUL that they were able to diagnos my POTS almost immediately. My frustration now is with finding the best specialist to treat it. After hearing all these awful missed diagnosis I'm now looking back and appreciating the fact that I haven't had to go through all that. How much can a person take without ending up with a psychiatric dx. Good luck to all of you and these have been helpful to read. I often wonder if I'm depressed but I think frustrated is more accurate for now.

Brye

[Dawg Tired]

Reading all these posts on this topic make me SO THANKFUL that they were able to diagnos my POTS almost immediately. My frustration now is with finding the best specialist to treat it. After hearing all these awful missed diagnosis I'm now looking back and appreciating the fact that I haven't had to go through all that. How much can a person take without ending up with a psychiatric dx. Good luck to all of you and these have been helpful to read. I often wonder if I'm depressed but I think frustrated is more accurate for now.

Brye

In my book I relate the first Dr kept trying to pass me off as depressed and after many visits - with symptoms worsening - I finally burst into tears and he jumped up, pointing, "AHA!! Here is PROOF! You are depressed!!" And he tried to give me Zoloft.... I told him I wasn't depressed - I was FRUSTRATED beyond belief.

I told him to kiss my rosy red patootie. Well, maybe I wasn't quite that nice....

[futurehope]

For the record, I saw my neuro yesterday and asked his opinions about what we all said here about psych diagnoses and POTS. BTW, he is a very knowledgable POTS doctor. He said:

It is not uncommon that POTS patients are told they have a psych diagnosis. (I'm assuming this is prior to getting a more accurate POTS diagnosis.)

He, himself, would never assume a diagnosis of depression by looking at the patient or hearing their symptoms. He said he would ask the patient, "Are you feeling sad? Do you cry easily? Are you feeling hopeless?" etc. He said it is not good medicine to assume a psych diagnosis without asking the patient....with one caveat.....some people are so depressed that they are laying in bed, doing nothing and not talking. Those symptoms can constitute severe depression. Those people cannot be expected to respond. But moderately depressed people will respond positively to the above questions if somewhat depressed.

He doesn't even ask the questions about mental health unless something appears to warrant it.

He is very aware of the fatigue level and difficulty in functioning of POTS patients and realizes it.

As a sidelight to another thread, I asked about low flow, medium flow, high flow POTS and what he thought I had. His answer:

We don't have the equipment/studies to measure whether you're a constricter or pooler. He mentioned a researcher that I cannot remember who was working on this and using his own measuring equipment to determine whether blood was pooling or not in our limbs. He said this researcher has died and he does not know of others pursuing this.

He will not answer a question without a scientific proof or answer. I notice this. He won't even guess. He will not respond without proof and studies to back up assertions.

[jump]

Actually I found having a psych diagnosis made things easier. It meant that when I said "Nooooo, I KNOW what depression feels like, and this is not depression" they couldn't really argue with me. Having had problems that were primarily psychiatric in the past made it easier for me to explain how I knew my POTS symptoms (like fatigue) were different - I could articulate the difference in how it felt, physically. This really helped my doctors understand and they didn't dwell on the psych side of things at all, except to occasionally check in and make sure my physical illness wasn't negatively impacting my psyche.

[futurehope]

Jump,

I'm glad you're psych diagnosis helped. My friend who has several health issues including a psych diagnosis said that it was her psychiatrist that had her pursue her physical ailments because the psychiatrist knew something else was wrong.

We, as POTS patients, have to be cautious with unknowledgeable physicians who cannot easily explain our symptoms and feel that they have to attribute the symptoms to a psych disgnosis. That's why I wrote this thread.

[Maxine]

Jump & futurehope,

I appreciate this thread, and I think there are some good points made. If patients don't advocate for themselves it can sometimes result in tragedy.

Some that DO try to advocate for themselves have trouble, as some physicians will consider them more nuts, as one neurosurgeon demonstrated for me.

I apologize for getting partially off subject, but in my case It was like fighting against a strong wind on a constant basis to proove I had a real physical condition. When I finally had proof from a good knowledgable ANS doctor, one of HIS nurses turned on me for no apparent reason. At the time I thought it would take everything I worked so hard for trying to proove how serious my physical illness was and undo it all. Filing a formal complaint helped, but I was still micromanaged for a period of time. More then one person was involved in the whole thing, and I was devastated. and wondered what I could have done.

My mother fell victim to terrible dismissal by docs, but for different reasons. They felt she was over exaggerating her symptoms, and told her she was out of shape and needed to exercise. (Basically another form of anxiety------a woman over reacting) After finding a small cancerous tumor in her bladder, they started to take her pain more seriously. The doctors she was dealing with put her in rehab the last week of her life thinking JUST the small tumor was there--(despite countless tests---including CT scans over 3 year span). They wanted to "build some strength" to prepare her for OUTPATIENT surgery. YES, I said OUT PATIENT. The reason I'm saying this in all caps is because she was in and out of the hospital with huge blood clots running the full length of her leg, and she suffered immense pain. they attributed the clots to her diabetes-------"and also laziness". They said she needed to get up and move. she was not stable enough for OUTPATIENT surgery. So here we are, trying to get her "moving", only to find out she was full of cancer----her whole abdomen. She found this out less then 48 hours before she died-------she had less then 48 hours of hospice. Beofore this they thought she was becoming addicted to her pain meds, so they were cutting back. Imagine that-----------the last week of her life they don't believe her, they're putting a dying woman in physical rehab, and taking her pain meds away.

This can happen with CANCER. My PCP is so stunned when he heard this story-----------------I imagine he has to be embarrassed and ashamed of the medical care where I live.

This is so serious, as doctors who assume someone has a psycholocial condition, or is aware of a co-existing psycological condition and doesn't take the physical concerns seriously attributing them to the psychological condition can kill a person.

My aunt who complained over a period of months to her PCP that she had odd symptoms of dizziness, feeling out of body, and weird headaches was told she had "anxeity", and was given an SSRI. She kept telling her something wasn't right, but still wasn't taken seriously. Finally, when she collapsed on her livingroom floor just before Christmas, they admitted her to the hospital with a brain tumor. They removed it just after Christmas. The same PCP still doesn't take her all that seriously now.

I think it's more then being labeled with a psyc diagnosis, sometimes doctors just don't take us seriously, and I think this is especially bad with woman.

Woman doctors don't even take woman seriously sometimes.

It's really a big problem that needs to be adressed in medical school before individuals ever get thier MD.

Maxine :0)

[Miriam Poorman-Knox]

Gently, respectfully I ask that this thread stick to the subject. It is very difficult when there are other issues in the mix. I think that when we demonize all healthcare providers with horror stories that those including myself find it upsetting. As with dysautonomia it is difficult to find a knowledgeable practioner. So with psychiatrists it is equally difficult in many cases. And I say it loud===its difficult to deal with this syndrome and not be depressed, not medication depressed. Thanks

Miriam