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by KellyBelle
Mon Dec 04, 2017 6:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dysautonomia, a new thing?
Replies: 26
Views: 4407

Re: Dysautonomia, a new thing?

Kelley: Do you know the etiology of your hypothyroidism? Auto-immune based Hashimoto’s thyroidits? Primary/central hypothyroidism (pituitary based)? Or other? Did you have hypothyroidism prior to chemotherapy? Or did the hypothyroidism manifest after chemotherapy? Your low thyroid function might be...
by KellyBelle
Sun Dec 03, 2017 11:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dysautonomia, a new thing?
Replies: 26
Views: 4407

Re: Dysautonomia, a new thing?

CRguy!! I’ve been gone so long :oops: I was sad to read of Brownbagger’s passing. To be honest, I couldn’t emotionally handle the dying situation so I just left. I feel selfish for that, but I have to take care of my own mental health. Many times I sat here and cried, “why not me?” when a young moth...
by KellyBelle
Sat Dec 02, 2017 8:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dysautonomia, a new thing?
Replies: 26
Views: 4407

Re: Dysautonomia, a new thing?

Thank you! I didn’t mean to imply you were wrong; I’m just beginning my journey and it looks like it’s going to be a long one. I was just hoping to find someone suffering from the same thing.

I entered your statement into my journal yesterday to take with me to my next appointment.
by KellyBelle
Sat Dec 02, 2017 6:08 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dysautonomia, a new thing?
Replies: 26
Views: 4407

Re: Dysautonomia, a new thing?

I am actually on a beta blocker (for years, for migraines). When I started to get orthostatic dizziness I tried tapering off, but then the positional tachycardia was crazy. Now I'm on a reduced dose. If I truly thought there was some magical answer that Mayo it Hopkins could provide, I would consid...
by KellyBelle
Fri Dec 01, 2017 11:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dysautonomia, a new thing?
Replies: 26
Views: 4407

Re: Dysautonomia, a new thing?

I’ve asked my PCP for a referral to Mayo Clinic, but in all honesty I don’t know how to physically get there. No steroids or other specific medications to increase your blood pressure? I was on some steroid-on-steroid medication, but it made me so irritable I stopped. I’ve read about beta blockers a...
by KellyBelle
Thu Nov 30, 2017 8:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dysautonomia, a new thing?
Replies: 26
Views: 4407

Re: Dysautonomia, a new thing?

Hawkowl,

Can you tell me more about your Botox injections and any other medications you’re on in addition to marinol?

It’s taken three years to get a diagnosis! We must be special because it is quite rare.

I am now totally disabled too. :(

Kelly
by KellyBelle
Thu Nov 30, 2017 12:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dysautonomia, a new thing?
Replies: 26
Views: 4407

Re: Dysautonomia, a new thing?

THANK YOU for posting this. I have hypothyroidism and an endocrinologist is on my regular care team. If you do a search for Dysautonomia, keep digging. Somewhere it will say it can be the result of toxicity from strong chemotherapy drugs. That includes those of us who had oxaliplatin or any other -p...
by KellyBelle
Tue Nov 28, 2017 9:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dysautonomia, a new thing?
Replies: 26
Views: 4407

Re: Dysautonomia, a new thing?

Thanks for the info. Sounds like POTS, which mostly affects young women. I’m so glad she’s better!

I haven’t been told I can overcome this, but maybe with enough salt and compression garments I can get my blood pressure high enough to get the mail. :D
by KellyBelle
Tue Nov 28, 2017 6:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dysautonomia, a new thing?
Replies: 26
Views: 4407

Re: Dysautonomia, a new thing?

This started eight years after chemo. But it sounds like your niece may have something similar called POTS, which is another form of Dysautonomia. Would love to hear more!
by KellyBelle
Mon Nov 27, 2017 12:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dysautonomia, a new thing?
Replies: 26
Views: 4407

Re: Dysautonomia, a new thing?

I stand up/I fall down. My blood pressure/heart rate are so low I have a hard time going to my mail box. I’m supposed to wear full compression garments 12 hours a day, but with menopause that’s not possible. Everything has to be high salt in addition to popping salt pills every few hours. Astronauts...
by KellyBelle
Mon Nov 27, 2017 9:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dysautonomia, a new thing?
Replies: 26
Views: 4407

Dysautonomia, a new thing?

I’ve been gone for years... finally decided the cancer wasn’t going to kill me. It’s not. The chemo is. I have neuropathy in my autonomic nervous system. The autonomic nervous system controls everything we don’t have to think about: blood pressure, heart rate, swallowing, and so much more. Has anybo...
by KellyBelle
Tue Nov 27, 2012 10:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Thank you.....my husband passed away
Replies: 23
Views: 3733

Re: Thank you.....my husband passed away

I'm so very sorry. Sending you peaceful, healing thoughts and prayers.

Kelly
by KellyBelle
Tue Nov 27, 2012 10:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Opinions/vent..getting married after spouse passes UPDATED
Replies: 40
Views: 4667

Re: Opinions/vent.. on getting married after spouse passes

I'm also shocked at your dad's behavior, but men often remarry very soon. They just can't stand the lonliness, and like somebody else said above, widowed men are very sought after. I'm more worried about "her" behavior. If you kids have reservations and aren't going to welcome a new "...
by KellyBelle
Sun Nov 04, 2012 1:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: the elephant in the room is revealed
Replies: 29
Views: 3758

Re: the elephant in the room is revealed

Thank you for posting such an uplifting, practical approach to her reaction to the elephant in the room. I know things won't be so smooth in the coming months/weeks, but letting Lauren be a "part" of her move seems important to her. Bless you all for being such wonderful caretakers!

Kelly

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