Counseling

[KarenLorrel]

I have seen Dr. Grubb and was diagnosed with POTS. He said the most/all of his patients see a clinical psychologist named Dr. Ken Davis. He is suppose to specialize in chronic illness...especially ANS dysfunctions. Has anyone seen him and if so could you give me you impressions and if it was worth your time and money? Thank you, Lorrell

[MomtoGiuliana]

I live in a different area so am not familiar with this physician, but just wanted to say that I did see a psychologist when I was diagnosed with POTS who had particular experience with NMH and chronic fatigue patients. He was very helpful, especially b/c we did biofeedback exercises that helped me learn how to relax my body and mind.

With psychologists, I think it is important to find someone who fits your personality as well as someone with experience with your particular medical condition. This isn't always easy to find and may take some trial and error.

Good luck.

Katherine

[Guest Julia59]

I did see Ken Davis for about a year. He's really a nice guy, and very down to earth. Yes, he knows a lot about dysautonomia. He has known Dr. Grubb for years. I live only about a mile from Dr. Grubb in South Toledo.

He helped me to learn how to recognise my symptoms before they get out of control. When many of us have a good day, we tend to over do it because we want to get things done. He helped me to pace myself, and recognise the subtle symptoms before it's too late.

He spoke a couple of time's for our local support group. I'm glad I went to him---and it was well worth the fee.

Julie :0)

[KarenLorrel]

Hi Julie,

Thank you for the response. I am apprehensive about seeing him because I pretty much have changed my job and developed coping skills over the years. Dr. Grubb didn't asked what i was doing to cope with my illness..just seemed to be a procedural item to give out Dr.Davis's card and say most/all of my patients see him. i want to show myself to be a cooperative patient, so I am going but it was good to hear that you had a worthwhile experience.

I have seen him once and will be going again on Thursday. The things you describes are the exact focus that he wants to take with me. Teaching me how to 'not hit the wall.' I can see it being 'okay' but have learned to do a lot of the coping skills myself...because I was diagnosed with CFS about 4 years ago. At that time I had to learn about a 'new me.' The adjustments were difficult but have made them...just not sure what Dr. Davis can offer. BUT, I will go on Thursday and see what he says. Thanks again for the response...I really appreciate it.

Lorrell

[Michelle Sawicki]

I sat next to Ken Davis at a conference before, and I've also had a few phone conversations with him. He does indeed seem to be a very nice, caring person. I think everyone adjusting to a chronic illness should seek counseling, and I commend you for giving it a go.

Best wishes,

Michelle

[MightyMouse]

Here, here! Coping with chronic illness is tough and counselling can really help. Nina

[briarrose]

I almost posted this topic last week after my primary told me that he suggests counseling for all his chronic illness patients, especially when they have the anger that I have.

Please understand that I rarely go see my primary. I have to be dying in pain or just fed up with my symptoms not knowing what to do next. Or have very new, multiple and scary symptoms.

This has been the case. I have had many problems with my vision for the past 2-3 months, among other neurological symptoms. I went to see him because I was starting to think that I was losing my vision. He told me that it was all POTS, even though when I talked to the NIH and they hadn't heard of the complaints that I was having. My primary told me that I deserve the medal of valor for coping with my copious symptoms. I don't want the medal of valor; I want a little relief please. He preceded to tell me Friday that because I have so much anger still that I might want to try counseling. He also put a guilt trip on me because I haven't tried the last few drugs that they are using to treat POTS - Straterra, Wellbutrin and Ritalin. Well, he?s not the one that is extremely sensitive to medications and has to suffer side effects for sometimes days afterwards.

I told him that I'm angry at the medical community for their lack of efforts and speed to find out simple things about this illness. They can't even put all of the symptoms together and are in no hurry to do so. I told him it's the pharmaceutical companies that aren't interested in developing a POTS drug because it won't make them money. I told him it's the pharmaceutical companies that won't accept POTS as an orphan illness, which was approved a huge amount of money by the federal government for research (I believe last fall.) The administration took POTS off the list of rare illnesses. I told him it's the doctors who pat us on the head when they think we need reassurance when we are really desperate for something to be done and don?t realize how sick we really are. I told him that it's all the people around us that need counseling to accept their inadequacies not us. I feel that it's a normal process to experience the emotional side of this situation. (Kind of like when I was going through my divorce, they wanted to give me anti-depressants and I said no it's normal for people to have some depression, fear, grief and anger in the situation I was in. Why is it that we have the pill pushers for everything and they can't accept our decision in some areas to not take drugs?) I told him it's my anger that keeps me going; otherwise I would be a vegetable in bed by now.

Please understand that I?m not suffering from depression but anger from incompetence and lack of understanding because they don?t walk in our shoes.

I went to the doctor last year multiple times for severe hypotension. I almost had to beg for fluids because I knew that I wasn?t retaining and I couldn?t humanly drink enough water. Last week when I had my MRI it showed spots in my brain that were commonly seen in people that suffer from chronic low blood pressure (kind of like mini strokes.) HMMM??.Why did this happen. It could have been prevented if they just listened to me. Do I have a right to be upset? I don?t have a medical license and I can?t prescribe myself everything I think I need.

I will get past this but I think my reaction is normal considering the circumstance. What do they want, for us to just be complacent and accept what ever this illness throws at us. I?m a fighter not a quitter, been that way my whole life. Not going to change my personality now just because I?m not acting the way someone wants me too.

Sorry to go on guys.

[briarrose]

Michelle and Nina

For the record counseling can be a good thing for some people. I agree that it helps teach us things about ourselves like limitation and coping. It's a great tool when applied at the right time.

I've been to counseling recently, believe it or not. My counselour suggested that I enroll in school and cut back to 24 hours a week at work. Get loans to live on for the next few years.

I think this is great advice if I was healthy and not supporting six kids on my own. I would love nothing more than to go back to school and have a real career but I have 5 more years before I get my children off to college and that is a priority right now. Maybe eventually I'll throw myself into debt, throw the dice and take the gamble that I can make it through 4-6 years of school on a limited income.

School is more exhausting then work, as many of you know.

[Ernie]

Hi Biarose,

I totally understand what you are going through. Here in Canada, we don't have an orphan disorder law so POTS is not researched.

I went to see Dr Grubb almost 2 years ago and I had to pay out of pocket money i (3,000$ including hotel and transportation). I asked the Quebec government to pay for the visit since I found no specialist here to even diagnose me. They refused saying that we have many competent specialists for POTS. I went to 5 of the Canadian "best" and they don't know what to do with my case.

When I was "healthy" I was paying my taxes and I thought the government would take care of me when I would get sick. No, not when you have a rare disorder. They just leave us on shelves, tell us that we imagine being sick and hope that we will die soon.

Can you believe that when my brother died last month of the side effects of POTS there where no pathologist in Canada who wanted to do the autopsy. My brother was a "hot potato". We had to ship his body to the States. One would think that if you die they will believe that you were really sick. I was so *&)*")/ to learn that my brother died of a "panic attack". Now, we are waiting to find out what is the real cause of his death.

If doctors would have listened to me when I started complaining about my symptoms 26 years ago (and even 4 years ago) I would not be disabled now. It seems that most professional in the medical community just don't care.

So I am angry also.

Ernie

[KarenLorrel]

It seems like this 'righteous anger' is appropriate! It is focus and will keep those of us who don't turn it into depression focused and continuing to fight this unfortunate condition.

I, too, am a fighter and will never give up.

I want information.... and would like a primary care doctor in the Ann Arbor area, or Adrian, Michigan...or Toledo, Ohio, who is interested in working with those of us who do not want to give up and say, 'this is as good as life for us gets.'

I will not accept that this is 'as good as it gets.' BUT.... need to find a primary care doctor who has the compassionate heart and willingness to try innovate approaches.

Does anyone know of such a primary care doctor in my area?

Thank you!

Lorrell

[MightyMouse]

Briarose, I'm with you-- just like doctor's, not all counselors are created equal. However, a good counsellor can mean the difference between surviving and not surviving for some people. I suppose I have particularly strong views on this given that I have some family members who've had serious mental health issues. For them, it was life or death, literally.

I've been to counselling myself at various times. I have to say that my counsellor didn't thoroughly believe that I was physically ill rather than depressed (this was pre-diagnosis of dysautonomia). She's the one who isnsisted I have a psychiatric eval, with an extra push for that from my GP (who was awful and insisted I was just depressed too). I felt so vindicated when the psychiatrist said that he wasn't sure I was depressed, but that if I was it was "exogenous"-likely caused by chronic health issues that were as yet undiagnosed. Maybe I'm not only one here who's had a great psychiatric evaluator

Despite our disagreement about the source of my exhaustion, lack of energy and mental focus, my counsellor was still quite good, and I do credit her for helping me re-establish ties with my family members in a way that kept me from being dragged into their messes. I think she's part of the reason I still am connected to my mother, flaws and all. She knew I disagreed with her on some points, and we were still able to work together. Most of all, I appreciated her very practical suggestions. Maybe that's got something to do with her social work training as opposed to psychological background.

Here's my thought on this--for those who have a strong family and/or friend support network, it's possible counselling might be unecessary or redundant. For those who don't have that, it can be a lifeline--if, and this is a BIG 'if'--if the person providing services is qualified, gives practical assistance as opposed to the type of advice Briarose was given that is just not "do-able."

I know this is a very sensitive topic, so I hope I haven't offended anyone.

Nina

[Michelle Sawicki]

Hi Lorrell,

I used to see Dr. Krafjiak (sp?) in Chelsea. She wasn't a POTS specialist, but she did know the basics and was always willing to try things I suggested. Unfortunately she moved to another state last month. There are a couple of doctors at UofM that treat POTS. I've seen Dr. Russell, although I didn't find him to be the most compassionate of doctors. He's a neurologist, not a primary. I am looking for a new primary too, so if I find someone good I will let you know. I live in Brooklyn...that's about a half hour from Adrian.

Michelle

[KarenLorrel]

Thanks, Michelle.

Chelsea would have been perfect!

FYI...

I have a friend who recommended a MD in Saline, Dr. John Ghuneim, who has lots of compassion and also uses alternative methods, such as accupunture, and supplements. He is not a POTS specialist but very willing to 'work' with those of us with unusual illness. He doesn't except any insurances so you have to pay up front and get reinbursed...initial visit is $250.

My friend says it has been worth it.

I called and receive their information packet...it was very informative but I got cold feet. The accupunture...was a little unsettling to me. If I don't get any responses from this network I may try him.

His number is 734.429.2581

Thanks for your response.

Lorrell

[MightyMouse]

Lorrell, I've had accupuncture a number of times. I didn't believe that it wouldn't hurt...but it didn't! Only one spot was ever uncomfortable, and the practioner took the needle out immediately.

Nina

[briarrose]

I hear the word counseling and I think of ***** stories that I?ve already heard. I think of Laura Hillenbrand, it took her going home to doctors and therapists that knew her to take her symptoms seriously (my god she wasn?t even functioning and they didn?t believe her.) It took a psychiatrist to tell her medical doctors that she is truly sick. What is wrong with this picture??? I ask you is it really us? Or is it them?

I think of all the POTS patients that have been told that they are nuts for 10+ years before they find a competent doctor to listen to them and finally get a diagnosis.

Why should I see a psych doctor when I know what?s wrong. What I REALLY need is someone to listen and help me with my MEDICAL complaints when I?m too sick to stand or even crawl to the bathroom. I need a medical doctor to believe me, that?s all I need!

As for acupuncture, I?m all for it. My back went out last year right before my first visit with Dr. Grubb. I took Valium and pain killers for several days without relief. I had never been to an acupuncturist, so I was skeptical. I went 2 days in a row. I couldn?t even walk in, I was walking hunched over. The second day they did acupuncture on me, I was almost 100% better. I walked out of the office even. Wow! I believe now!

If you haven't read Laura's story - here it is

http://www.cfids-cab.org/MESA/Hillenbrand.html

[MightyMouse]

Briar, I can understand your anger and at times have shared it--both at the pysch services folks and medicine. I guess I just want to clarify that I'm speaking of counselling by someone who specializes in helping people who are chronically ill.

Again, counselling is only helpful if it's something YOU feel you want or need--and if you've picked someone with the right type of background. (I kind of feel the same way about doctors )

Nina

[morgan617]

i get angry and frustrated, but i'm telling you, my therapist has helped me more than i could ever express. she really validates me and has actually written to doctors telling them not to practice psychology unless it's their chosen field! she has stated that i am not crazy, nor do i have personality disorders. i am sick period, and that depression is a very normal respose to chronic illness. as is anger and frustration. i went to my pcp yesterday and he almost cried. he said he just keeps failing me and he really wants me to go to vanderbilt (they lost my records) or somewhere where someone can tell him how to take care of me. i live in washington state. you wanna talk about being far away from any docs who specialize in this, try living as far across the country as you can get. he said he would do ANYTHING it took to get me help. i told him that no matter what happened to me, the fact that he cares this much means everything to mean. every doc he has sent me to has blown me off and he is so angry at them, he won't send his patients to them. so i feel very fortunate to have a great therapist and the world's best doctor, the only problem is , as they say, i'm just too da$^ complex for them. we discussed the fact that with my hypertension the way it is, i am very likely to stroke or have a cardiac event, but he said, just hang in there till i get you to someone who can help me help you. isn't that refreshing. no drug pushing, no you're crazy's, no judging. just wants to help me. sorry i have gone on, but i know i have been so blessed by getting a great therapist and doctor, i can't believe there aren'y more out there like them. good luck to all of you and please wish me luck with vanderbilt not losing my second set of records! morgan

[MomtoGiuliana]

Morgan

I am so glad you have such a caring doctor. I hope you are able to get your symptoms controlled soon.

I just wanted to add to what Morgan said--I agree that a psychologist or psychiatrist can be a great advocate for us. The psychiatrist I was bullied into seeing by my general practitioner wrote back to him that I had no mental disorder, but an undiagnosed physical problem. This validation can be very helpful when we are dismissed by our medical doctors as mental patients with no significant problem.

Katherine

[Guest Julia59]

The main reason I saw a therapist was to handle the grief from all those a-- h--- doctors that told me I was nuts. I was seeing a woman therapist before I was diagnosed who believed my problems were physical---and she was actually trying to help me find a decent Doc in my area.

When I was diagnosed with POTS about a month later, I told her that I finally found a doc (Dr. Grubb) who believed me and diagnosed Dysautonomia. On my second appointment I asked Dr. Grubb if HE knew of a psychologist who could help me deal with my anger and greif. He suggested Ken Davis.

I loved my old therapist----but she didn't know much about ANS dysfunction. However, she is willing to learn and told me to send her information any time. We had a friendly parting, and I still reccommend her to anyone who needs therapy.

Fortunately, Dr. Davis helped me through the worst of my issues. Now I just handle things on my own. I have educated myself over and over on ANS disorders and it does make things a lot easier.

I still have anger about ignorant arrogant Doctors who's only agenda is $$$$$$$$$. I have written many letters to media both local and national to no avail. I even wrote a scathing letter to a major corporation who houses several local hospitals in the NW Ohio area. I wrote it in the same arrogant fashion some of our Docs TALK to us. The theme of my letter was based on their web site having nothing on ANS dysfunction---NOTHING! I checked every angle---POTS, PAF, NCS, MSA/Shy drager/, Familal Dysautonomia, OI, ............

I had a response in less then 48 hours----claiming that they knew of dysautonomia-----and said they knew POTS was very serious. They said they were waiting on approval from the board to put ANS dysfunction information on the web site. To date-----nothing on ANS dysfunction on THAT web site.

I still keep trying, although I feel it's in vain, I still can't sit here and ignore this crazy ignorance by the medical community. I'm commited to stay on this mission of communication to media, and medical community---------but I take long breaks until I roll again. It's draining to keep writing letters/e-mails----and never get responces. I have only had one response, which was the letter to the hospital corp.

Dysautonomia is very serious---and I can't believe the ignorance in the medical community-----CAN'T BELIEVE IT! Do we have to HAMMER it into their heads---or what!

Julie :0)