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CallieAndToby

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Everything posted by CallieAndToby

  1. This makes total sense. I think this is what is happening to me. When I actually do get blood flow to my brain which happened on accident months ago in the ER, all the OCD, anxiety, fatigue, brain fog, went away and I felt better than I had in years and slept well that night. It was a combination of things they did and some things that were accidental but it showed up that that was the primary issue. Thanks @Pistol you're very knowledgeable and helpful. Good information to print out.
  2. Well I never feel empty and feel full with very little urine and it helped with that. But it is known to raise blood pressure if you can handle vasoconstriction. You should look up the official website and read about it. Edit: I know it's indicated for OAB but a lot of IC patients get help from it.
  3. Tetris is fun. The only show I'm watching is "pitbulls and parolees" I really love the work they do for well deserving dogs.
  4. I like to get on YouTube periodically and I mainly watch pet rescue videos and music. I had a photo assignment (just for fun with group online) to take a picture that represents a band and I ended up doing Heart and then watching them on YouTube has been a blast. I also just watch anything inspiring and encouraging, social media was too stressful.
  5. Thanks for the response. Yes I'm very dismayed right now the PCOS makes sense (random weight gain, acne, hair) but I just didn't expect one more diagnosis....... There was a young guy that was bedridden for 10 years and he figured out what was wrong himself but I think he had a degree that leant itself to that discovery, but he said he would be lying down and put a sheet of paper on his chest and it was flapping wildly from his HR so high and it turns out he had tumors inside of his adrenal glands. He got doctors on board then they said, "well we don't know how to do surgery" and he found one surgery done on rats using a spoon to remove it and they went ahead with him and he was cured. I forget his name but he worked with a doctor at UAB who is now retired and he also said his grandmother and mother were exhausted all the time and in bed all the time so I guess I'm mentioning this because tumors outside and inside of the adrenal glands are also known to cause problems but in his case it seems hereditary or maybe genetic? Very sad what he went through but glad he's better.
  6. Myrbetriq a bladder medication helps with nerve feelings in the bladder but also is a mild vasoconstrictor so I've heard from a lot of IC patients that is raises blood pressure and I personally would recommend this medication. My bladder is awful and nobody ever told me it was connected to dysautonomia so I'm still waiting for autonomic help but I think that will help me be able to empty however I'm in pain all the time b/c of IC. I have to follow a very strict diet.
  7. Thank you for the informed response it does seem like a 24 hour urine would be the best way to test. Well when I had the labs drawn for testosterone it said that adrenal hyperplasia was a possibility, CHP, so that is a primary adrenal disease that causes the adrenaline. There is also "adrenal PCOS". I will keep posted when I get full testing back.
  8. Thanks. Yea the women had no idea at the lab how to do this testing and I really didn't either. But I can't sit or stand more than 7 minutes and I can't walk around so I don't know that this is an option. After I attempted to at least sit for 30 minutes they told me I was free to go and I said, "you have to draw blood again" then after awhile they had me lay back down to draw blood, it was a nightmare. But like I said the hospitals here really only cater to their employees getting to use their labs with the expensive insurance.
  9. I wasn't able to do the testing properly because the lab did it incorrectly. I live in a small city and the hospital only accepts one insurance, not the one I have. I need a lot of testing, all I've ever had was a TTT. I tried guanfacine and it made me very lethargic, fatigued, caused terrible insomnia but it did help the issue. I have very low blood pressure so it made that a lot worse. I hear mestinon can be good for this but I still don't have an autonomic doctor, I'm on several waiting lists for a long time.
  10. Thank you for your response. I have severe POTS. Seems like the adrenaline does have in big part to do with dysautonomia. I have some gabapentin but didn't try it for long b/c I found it to be sedating. It seems worth a try b/c I'm in pain as well. Thank you for your response.
  11. So back in 2007 I went through a period of remission and then in 2008 I started having adrenaline / flight or fight all the time, 24/7 and it lead to me being bed bound. I couldn't sleep at all during that time and I was just put on massive amounts of sleep meds trying to finish school. Well fast forward to last year, after taking the cancer medication which was just a massive immunosuppressant that I took last year for 3 months, the adrenaline has started back and it was on and off when getting off of it but now I'm bed bound and the adrenaline is 24/7 and I can't stop it and I'm too sick to do anything. I'm in perma crash and exhausted and can't sleep. The beta blocker doesn't help, klonopin doesn't help, increasing sleep meds doesn't help. I will be getting some endocrinology labs done soon. With my testosterone as high as it is I believe this is some disorder of the adrenal glands, PCOS just doesn't fit, but reading about overactive adrenals on the NIH health website and all the conditions just fits. I'm just wondering if there is something I can do in the mean time just to be able to make it to appointments etc. to calm down my adrenals? I do have a psychologist I talk to on the phone but he's just a moral support at this point. Saline iv's help which isn't an option right now. Recent labs did show my folate is very very low and I do have the MTHFR genetic mutation, so I'm thinking about starting on methyl folate + B12 again just get side effects (just mentioning it b/c don't know if it has something to do with all of this). Maybe I'm posting in the wrong forum, just let me know, I've deleted all social media at this point.
  12. Ouch! That's a horrible thing to say to a patient. I once had a doctor tell me if I got a "boyfriend" I would be happier and okay, lol. This was years ago but I was too sick to do anything so....
  13. Yea I hear you. My ears have been itching for about 10 years and I saw so many ENT's in the past and they would look in them and just say they didn't see anything. They put me on antibiotics and ear drops but that never helped but now I'm wondering, why not a biopsy or why not consider fungal or yeast? Now I've got MRSA and sores in my ears and the itching is unbearable....... Can't believe he said "runny nose" to you, I feel like they get out of med school and they are content knowing basic basic stuff but when it comes to complexity I have yet to find a doctor that wants to look outside of the box and actually do some research and I feel like patients like you and I that are beyond sick are left to do research. Anyhow, I don't know if me venting was helpful at all but I understand and feel your frustration and I'm so very sorry. I have the headaches, ringing in ears, and my jaw keeps popping as well........
  14. I didn't do well with guanfacine. It made me extremely exhausted and tired even though it stopped the adrenaline. It also gave me horrific insomnia. I have low blood pressure issues and it made my blood pressure much lower and I would feel faint just moving my head. I'm really sensitive to medication so even at 1/4 of 1mg I was having these symptoms so I had to discontinue.
  15. I think @Pistol has the best advice. But they usually base it off of half life of the drug.
  16. Bystolic. And they are fine together. My pharmacist would flag me if otherwise.
  17. Klonopin definitely helps with my conditions as well. I'm not sure about the HR but I had to get on a beta blocker to lower my HR so it didn't help that enough in me either.
  18. Thank you your response helps a lot. I too am always told to drink fluids all day long and I wonder how many times I have to tell them I'll be going to the bathroom all day long.
  19. The person I live with told me it wasn't possible for me to feel better soon after the drip starts, but I do. Just wondering about others' experiences.
  20. My testosterone is extremely high and they think Have either PCOS or ADRENAL hyperplasia so with those two disease one of the main visible symptoms is acne.
  21. This is great advice, thanks. And it does explain why I'm in a bad rut. There have been some major emotional challenges in my life and situations where I've been pushing myself to the brink which leads to more and more adrenaline and I think you're right that that in itself prevents sleep. I went to the dentist a week ago and they didn't even have reclining chairs and the feet didn't lift and it was like 2 hours of being upright and near syncope and I crashed bad after that. Sigh.
  22. I'm having the same problem. Haven't slept much in 2 weeks and feel like I'm constantly running on adrenaline. I have to go to a mayo in Jax appt in 10 days guys and I'm not sleeping or resting and I crashed today after filling out one form. Any suggestions? They don't feel like they can reschedule. My biggest issue is I don't feel sleepy at night but I've taken melatonin and a slew of medications for years.
  23. Just wanted to say I'm sorry. They gave me Bystolic to lower my HR and it was successful but I have very low blood pressure and it made it even lower, sounds like that wouldn't be an issue for you.
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