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lieze

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My nurse therapist is horrible.

I'm not sure she is the right resource for me.

All she wanted to talk about was my bipolar husband.

She told me he's gay, he only stays with me so he doesn't have to pay child support and that we both blame each other for our unhappiness.

I did not bring his name up she did.

Her voice was in a yelling harsh tone the entire session she had me in tears.

I need help with these issues I'm having with being able to tolerate foods.

She did not discuss a diet plan with me at all. Instead of being glad I was trying to get in 2 ensures a day which is 500-700 calories depending on the type I get she said she wanted me to drink 3, well I don't know that I can get that much in. I like to drink other liquids too and gatorade and I drink a glass or two of milk per day that I enjoy and I like to mix up the ensure with eating solid food or I feel bad with all liquid in me.

She would not listen when I told her I had food allergies she acts like I'm just a neurotic which I might be but...if I do have a neurotic body from what I understand I need to treat my body tenderly.

I am feeling like I need to see a dietician and an allergist.

I do not want to be told horrible things about myself telling me I look horrible throwing a list of things at me that can happen due to anorexia.

I have been sick. My eating disorder is not related to wanting to be thin I cannot eat. And all of my anxiety does not help.

Can anyone advise me here?

She wants me to start the Lexapro and I am scared.

Do you have any ideas of how I can deal with her and get help?

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((((((((((((((((hugs))))))))))))))))))

I'm concerned about you and I wish you the best of luck on this journey. We're all here to support you. And 2 ensures is great! It's a definite step in the right direction.

The nurse therapist worries me. Perhaps it's time to look for someone else to help you. I don't think anyone should be telling you that your husband is gay, except, perhaps, your husband.

I've had a lot of issues with foods too - never because of a desire to be thin (though I am) but because of anxiety that made eating impossible. I'm 140 pounds and 5'8" now, so things have evened off, but there were months when I was younger when I could barely eat anything. Is there a time of day when you're hungry? I tended to be hungry at night and better able to eat as the day went on.

I think something to help with anxiety might help you. Medication? Maybe? I find Rescue Remedy works well - just a few drops under the tongue. You can find it at a natural food store. Also, try eating while reading a good book or while watching TV. Sometimes food just disappears that way and you don't even realize you've eaten it.

I would say keep up the good work with the two ensures. Solids help keep your strength up. Maybe try puddings or other soft foods that tend to liquefy when you eat them.

Sara

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Leize,

Sorry about your experience with her...it doesn't really surprise me though.

Ok, Like I mentioned before and it probally saved my life maybe I should tell you more in detail of my situation.

I had a 2 year old and 5 month old and was having anxiety attacks everytime I ate, I had absolutely no energy and layed on the couch almost 90% of my life.I did drink to deal with the depression I was facing because I felt like my complete life was out of my control (even my body) I ended up going to a crisis center and begged them to admit me, I thought I was just depressed at that time, they took me in the same day.

I had a meeting with a panel of therapists and described my feelings and symptoms and I was DX with generalized anxiety and major depression.

Anyway I went home after a few days by that time blending my food was the only way to stay alive! And I started lexapro ,within 2 weeks I was a completely different person ****FREE and felt in control the eating symptoms were much better and I went off of the med in 4 months.

I believe all along POTS was my problem but luckily that med helped me in everyway.

I don't take any meds now but will be starting therapy in a few weeks to get over my fears, you need to find a counselor that you are comfortable with or they won't be able to help you.

I have many symptoms when I eat and after currently, and I seriously believe its because the blood is pooling in the digestive system causing all the other annoying unexplainable things but its everyday and I have to just keep eating. Not eating is making you worse and is going to make your symptoms worse. You probally focus so much on what your body does when your eating that it created a fear response and that has to be stopped.2 ensures is good 3 is better and the PLUS type is best for maintain weight. Leize I know how u feel honestly and I have had the (*support) issues in my life too, where your life is completely out of control and your body is not working right either, its hard and sometimes feels impossible but there is a way.Remember the strong person you once were (mentally and physically)the person you were before life got the best of you its still in you and you have to find ways to bring it back out and you will be okay.

I think when we deal with chronic Illness or other problems in our life we search and search and wish someone could come to our rescue , and we also depend on our spouse and family to be understanding and supportive and that doesn't happen in everyones case so then we reach out to our doctors and counselors and if that fails we feel alone and helpless. Reach to GOD and within yourself (because thats where your spirit lays) and keep fighting for yourself and your children.

Sorry if I said to much brain fog has been good to me for a few days now:)

But I thought maybe that would help you or someone else and thats is what we are here for.

Lissy

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I can relate to simply not being able to eat. At the worst of the worst, I can recall being in a hospital bed willing myself to be able to take one bite of the meal set before me. I felt like I was on an episode of Fear Factor, trying to eat gross things, but gagging it back up. You are doing the right thing by trying to get down the Ensure. Just keep plugging away at it. I did gain my appetite back! I enjoy food and lots of it these days. As for the Lexapro, Dr. Grubb and others recommend SSRIs for some POTS patients, so why not give it a go? You can always stop it if it makes you feel worse.

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Seriously the lexapro was a godsend last time for me. I don't know what would have happened to me if I didn't take it.

You definitely sound like you have a lot of anxiety with food, which is completely reasonable when you feel so bad.

I'm finally starting the lexapro on the 15th. I am afraid of starting any new meds but can't wait to start feeling human again. Just an fyi get a benzo for the first week. Anxiety might up a bit while your body gets used to it.

Good luck and know we are all behind you. You will start feeling so much better with that Med.

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Godsend for Mack, too. Start with a low dose & cut it in half. Work your way up slowly. Helps him eat- bunches.

Hugs-

Julie

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Just wanted to throw a word of caution, as far as the SSRI's go. You may start the medication and think it is not having a tremendous impact. A lot of their effect can be subtle. But if you stop taking it (which you should never do abruptly! always discuss with your doctor/health care provider about how to safely taper off the med.) you will suddenly realize it in fact was making things significantly better. And unfortunately, most of the drugs in this class are not as effective when you resume treatment with them. My dad is a pharmacist, and this was the exact caution he gave to me when I started taking cymbalta. The med helped far more with my widespread pain than I even suspected, until complications with my liver forced me to stop taking it. I am currently taking a teeny-tiny dose of prozac, and while again I don't really notice much improvement, it hasn't caused me any major side effects, and I have already learned from painful experience how awful things got w/o an SSRI.

And as far as your nurse therapist goes, I don't think you could have seen anyone worse! IF your problem is anorexia, (which is a BIG "if" in my mind, there is an enormous difference between the starving myself that resulted in weight loss when I was young, and the recent weight loss issues I have been having due to a variety of GI issues!) you need to see someone who specializes in eating disorders. You mentioned something in passing about a program in Cincinnati, was this the program at Christ Hospital? (I grew up in Cincinnati, so I am familiar with it.) They have an excellent eating disorders unit there, really top notch. If you don't want to go the inpatient route, I am sure if you call them they can recommend a good therapist in your area. However, I don't think you have had anywhere near enough GI/POTS evaluation to rule out your weight loss issues from being strictly medical in nature. If you are in the Ohio area, I would STRONGLY encourage you to go to the Cleveland Clinic and get a proper evaluation. I was dx'ed there, and while I eventually switched my POTS management to Dr. Grubb in Toledo, the Cleveland Clinic is a stellar resource for evaluation. Hope this helps!

Sandy

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I took a low dose SSRI for awhile and it really helped me. It does take awhile to adjust to the med and can take several weeks to notice improvements in symptoms due to it--so you have to be patient! I hope it helps you. I also got (and do sometimes still get) symptoms after eating due to blood pooling--dizziness, heart pounding, etc. I imagine that is hard to sort out if you also have food allergies. I hope you get the help you need soon. If a therapist isn't helping you there is nothing wrong with switching to someone else--as others have said, it sounds like a specialist in eating disorders is needed.

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Lieze,

I hope you're feeling better....more stable. I had a quick question- is this a psychiatric therapy nurse? If so, I am afraid that s/he will only focus on your mental health w/o regard to your physiological issues. Autonomic dysfunctions are notorious for manifesting as anxiety/panic due to real biological changes occurring in your body. I suspect that a psychiatrist would be more knowledgeable & open to exploring that connection; while a paraprofessional might not be.

If you are uncomfortable with her "talk therapy" and the direction it is taking- say so & ask to speak with someone else. Make it clear that you suspect your physical condition is causing your anxiety & inability to eat. Ask them to help you find an appropriate physician.

Stay strong & keep us posted as you are able-

Julie

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That is my fear also Julie.

She was unwilling to listen to how I feel when I eat and the fact that I do think I have allergies and have histamine responses.

She blew me off.

I want to get better but I want to be safe about it.

I am not sure what exactly her training is.

I am not going at this point to talk about my husband.

When I got symptomatic in her office she did not really want to hear about how I was feeling.

I'm still scared because of my health.

The weight loss just adds more issues that's all.

I feel so lost and I am very afraid still to try the Lexapro.

She did not make me feel comforted at all.

In fact she made it a point to be confrontational.

I keep thinking about what my other options might be.....

I can tell you if this is the type of treatment anorexics are receiving when they are that ill I feel sorry for them, and some don't make it?

What a horrible way to spend the last years, months of your life being treated like that.

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Lieze,

From reading your signature, it seems like you may not have ever had a TTT- am I right? In that case, perhaps the best place for you to be would be somewhere where docs "get" how autonomic dysfunctions can affect our GI tracts, etc. Somewhere where you can get the appropriate testing to document your current issues.

Maybe tell us what city/state you are in & we can try to find more suitable help. At 87 lbs, I suspect that you may need to go in-patient for a little bit to get more stable and stronger- somewhere where they can monitor HOW food is affecting you physically.

I hear that you don't feel supported by your current helper. Give us more info so we can help.

Gentle Hugs-

Julie

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I am in Northwest Ohio.

This evening I am having trouble with my swallow.

I feel as if I have a knot at the top of my throat?

I did have a lot of stress today because I had to take my daughter to the dentist.

I did not try to drive but sat with her while she had her procedure done.

I've read that the swallow issue can be due to anxiety.

I am trying to eat a bit of yogurt anyway.

If it does not let up I may try just a little bit of Xanax and see if I can get myself to relax.

I have not had a TTT.

In this way I do feel like this is anxiety.

It is always changing the way it manifests for me.

Like before the stomach issues were more indigestion and huge amounts of gas (I would burp like a sailor)

Then it changed to almost a panic attack feeling with high blood pressure for me after eating just a small meal.

The foods I feel like I have had allergic reaction to are garlic, onions, and potatoes.

I would like allergy testing to determine if I am having true food allergies.

It feels like almost an anaphylactic type response I'm having.

My weight is about 89-92 somewhere in that range depending on time of day and how I'm dressed.

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If it is true anorexia it is something that is a life long struggle. I know someone who was helped so much by a very old doctor who gave her anabolic steriod shots. It helped her to start eating. It is what they give to POW's when they are rescued from concentration camps. Because of the food depravation, it changes the brain chemicals and it makes it nearly impossible to eat. It becomes a very physical thing and because the brain chemicals are changed because of the body dysfunction - you can't WILL yourself to eat. The imbalance in the body has to be addressed before you can eat. She had 5 of these shots and started eating. She was very near death and has recovered somewhat from this horrible illness. She also has severe othostatic issues. I think there is some sort of connection here with the food disorders and the orthostatic issues. Also, in her case - the only thing she actually had control over was what she ate. Sometimes when a person is in a stressful situation - this is the thing that is chosen to be in control of - because life is so out of control. Don't know if that is your situation - but since you mentioned Life situations - it's something to consider. Hoping for you to find the support and help you need. The way this nurse is treating you IS the old way of treating an anorexic. Alot of new information is available for this illness and treating it how it was treated back in the 70's is NOT the right approach. It did not work with my sis and it won't work with anyone else. Tough Love is not the answer - the dysfunction of the body and brain chemicals HAVE to be addressed. If you have the desire to eat, keep making those baby steps and search out for the right kind of help. You NEED and DESERVE the help!!!!

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I think the not eating has been a bad mistake obviously, but I think maybe more than wanting to control my life by controlling my food intake when I am upset and stressed I have no apppetite, I go for hours wih a knot in my stomach and tensed up and feeling sick because my heart is aching ( I feel hurt emotionally) so I think if I just stop that pattern maybe I can get tis under control.

My concern is been though I am trying to eat now I am not really gaining, I am just stuck and I try to eat all day long.

If I have any stress at all it seems I just burn up all calories I consume.

I am trying to keep ky activity level very low so that I can let some of these calories stick.

And I am trying to broaden the amount of foods I eat slowly and lose my food phobia,

I do think it would be wise to get tested for any real food allergies.

That way hopefully I can feel even safer about eating and if I do have a reaction, perhaps just chalk it up to panic or my body not being used to having so much food in it, rather than fearing I am having an anaphylactic response.

I am just so sensitive to everything,

I am just now taking my daughter to the dentist at 6 yrs old and her cavities are so bad they had to cap two teeth yesterday.

It just makes me feel like a horrible mother,

I get into that whole mental thing rather than being thankful that we can get it taken care of, that it is just cavities and not a horrible disease that she has.

I have just been so sick the past two years I did not even know how to schedule im taking kids to a dentist.

Husband has been unable to help with it and I still didn't know how I would do sitting there with her but she broke a tooth chewing on ice so I felt like I had to take her.

They found the other issues while she was there and I guess all her cavities are starting between her teeth.

Poor thing.

So any time I have stress and issues to deal with I just feel like it's two steps backwards as far as any progress I can make.

It's like we need life to stop until we get better or help.

My help is limited.

I do appreciate everyone trying to help me.

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Lieze,

Below is a list of docs that specialize in autonomic dysfunction in Ohio. It does seem like so many of your issues are overlapping- GI, anxiety, allergy, autonomic dysfunction, etc. My guess is that it would be best to have ONE doc oversee things & coordinate all of the specialists and testing. I wish you had access to a good psychiatrist there (not your current nurse therapist) who would LISTEN to you & help you find the testing/doctors you need to address your physical issues so that your anxiety would be lessened and you would feel less afraid to eat. Maybe consider an in-patient stay at CC or Case Western. I feel sure you would find all of the specialists you need there under one roof. YOU are important. Your kids will be OK if you take some time out to take care of yourself. Oxygen on Mommy first!!!

Dr Blair P Grubb

Medical College of Ohio

Dept. of Medicine- Division of Cardiology

CS 10008

Phone: (419) 381-3697

fax (419) 383-3041

Sheldon Brownstein , MD

Comprehensive Cardiology Consultants, Inc. (Cincinnati, Ohio area) 3219 Clifton Ave., #105 Cincinnati OH 45220

(513) 861-5555

Clinical Cardiology

Dr. Fetnat Fouad-Tarazi, MD Head,

Hemodynamic and Neuroregulation Lab

Department of Cardiology-Desk F15

The Cleveland Clinic Foundation

Cleveland, Ohio 44195

Phone: 216-444-5828

Fax: 216-445-3102

Dr. Thomas Chelimsky, MD

Assistant Professor of Neurology Director,

Autonomic Disorders Division Director,

University Pain Center

Case Western Reserve University Cleveland,

Ohio Phone: 216-844-3495

Fax: 216-844-7624

Autonomic Lab: 216-844-3496

Pain Center: 216-844-1476

Special Interests: Chronic Pain, Dysautonomias, Painful Neuropathies, Reflux Sympathetic, Orthostatic Hypotensiion, Syncope,

Neuro- Urology University Hospitals of Cleveland

11100 Euclid Ave

Cleveland, Ohio 44106

Phone: 216- 844-3495

Fax: 216- 844-5730

Gentle Hugs-

Julie

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Okay so I need to figure out a way to get into see one of these people then.

I am going to have to rack my brain here.

Worst case if I get to a point I need to just go somewhere maybe I can just try Cleveland again but ask for the dysautonomia specialist.

There is one psychiatrist I know of but I am not sure how "good" he is...

He was like the head psychiatrist at a local hospital and the rumor I heard was that he was let go for having sex with a patient.

Ugh!

I wish we were all closer to good help.

I did see an allergy "office" when we went to take my daughter to the dentist yesterday in Findlay Ohio.

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When your heart hearts (especially emotionally) it can and will affect your entire body. Sometimes situations can not be changed - but learning how to react to things in a different way can. Really the only thing we actually have control over IS --- HOW --- we react to things. It's not what's happening - it's how we preceive it to be. It's how it affects us and how we allow it to affect us that we have control over. (This is counsel for me too. I have a hard time with this one.) Us sensitive people take things allot harder than the majority - things, people, situations matter so much more to us. But, the way we react can/does make us physically get sick. Hang in there darlin' - search out that help. You do DESERVE it. And like Julie said - "oxygen goes on momie first".

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It happened today issie and I just had to reflect and think okay I am upset so I should eat!!!!!

I am trying to break those negative patterns I've developed.

BRAVO - GIRL - YOU GO!!!!!!! Keep us posted - you're on the road to recovery. Yayyyyy!!!!

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Just a quick note, I had my evaluation and testing done at the Cleveland Clinic. Everyone was very nice, and very thorough in the testing. Dr. Fouad (sp? brain fog, forgive me!) was very nice. I was an out of town patient (from Columbus, Oh) so they scheduled everything for one long day of testing. I have also been seen by the GI docs there, and had very good results. I eventually moved my POTS management to Dr. Grubb, but still see docs at Cleveland Clinic to manage neuro and GI issues. Just call Dr. Fouad's office, and they will get you to a triage nurse who will determine who you need to see. And as long as they know you are from out of town, they will try their best to accommodate your schedule.

Sandy

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Lieze,

I am sooo sorry to hear your nurse therapist isn't supportive. It sounds like you need a change to a professional (licensed) counselor (Psychiatrist) that specializes in eating disorders and emotions. He/She could maybe help you work through your feelings along with prescribing the right anti-anxiety medication. I think you also need to see a Dietician to help you find the right dietary/caloric intake for you. I see wonderful GI doctors down at the Cleveland Clinic in Cleveland, Ohio. I would highly recommend you come to the Cleveland Clinic and see them along with Beth Czerwony-Dietician there. She helped me find the right diet to meet my dietary/caloric intake which helped stabilize my weight along with gaining weight. The GI doctors got me on Domperidone to help with nausea and motility for my Gastroparesis. I am enjoying eating again. Good luck.:)

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Lieze,

Here are the doctors & dietician I have seen at Cleveland Clinic-Cleveland, Ohio:

Dr. Robert Shields, Jr, M.D.

Co-Director, Center of Syncope & Autonomic Disorders

Neuromuscular & Neurological Institute

(216) 444-0855 or

1-800-223-2273 ext. 40855

Dr. Kyrsten Fairbanks, M.D.

Gastroenterology/Hepatology

(216) 444-6536 or

1-800-223-2273 ext. 46536

Office: (216) 444-2708

Beth Czerwony, RD

(216) 444-3046

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