CallieAndToby

My dog is 115 lbs Rhodesian Ridgeback mix so where he goes it's not small space he's in a room with a large bed and space to move around and they let him out throughout the day. Good luck.

I just got back from Mayo for a brain MRI with contrast emergency and it was such a brutal trip. What I did was put my dog in a kennel but I've used it before for trips and I know that not everybody can afford that but some vet offices will watch over pets for boarding for nights. The other thing I use is something I found online which is a blow up mattress that you put in the back seat and is propped up and I just lay back there. I didn't have the mattress this time so I laid in the back of my grandfather's truck. I'm sorry he won't do telemedicine any more that has happened with some of my doctors and it feels so frustrating. And sadly sometimes I have missed appointments. The ER's here won't do anything unless an arm is falling off and they are crowded and nowhere to lay down so that is not an option for me or anyone with a chronic illness, however I found one of those hydration places that was open late and just paid for a saline infusion after the contrast made me sick and it did help raise my BP. There is no easy answer as I have friends with such severe conditions they cannot leave their beds for anything. I literally sighed out loud because of my frustration with doctors not acknowledging the severity of our disabilities.

I tried Lyrica when I was younger for about 3 months and it didn't do anything. I understand what you're saying about meds but the nerve medications just don't help me at all. I've gained about 200lbs due to medication and lost about 150 of it so I've suffered many consequences due to medication not to mention my sensitivity and countless side effects and it's just not healthy to gain weight at this point and my endocrine stuff is really making it difficult to lose anything. The myeloproliferative neoplasm causes bone pain which is different than the nerve pain. Rapaflo actually helped tremendously with my bladder but it's an alpha blocker and lowers blood pressure.

Well I would take an opioid at this point and it might help me sleep which is when I run into so much trouble and I took one in high school and had no issues either. I didn't know how much pain might be affecting me but you and somebody else have responded and really informed me so thank you. It seems like I haven't really tried tramadol either, do you have experience with this one? I probably didn't try gabapentin long enough but the next day sedation was unbearable and Lyrica caused my aunt to gain 50lbs in like a month but she was really bloated looking it was odd. Hopefully once I move I can get a pain doctor, the doctors here saw I had IC and just denied my referrals. Sorry you're in pain too, awful.

Thank you. Yes at the moment I'm not getting any pain management. I have terrible IC too. Vitamin C makes me very sick taken in vitamin form, I get extremely ill in my entire body but not sure why. I can only get it from normal sources of food but fruit is mostly off limits though I can handle sips of mango juice and small amounts of blueberries or melon every once in awhile. I will definitely read this article! I'm sorry you've dealt with this for so long. I guess it's still a mystery why my testosterone and DHEA are extremely high after many blood tests.

There are tons of blood vessels in the stomach and they draw a lot of blood into the stomach area when digesting food (my mom is a GI nurse and has explained this) so for me personally, I lose a lot of cerebral blood flow after eating the wrong things or too much. I have to avoid carbs, anything heavy, and eat very small meals/"snacks".

180 bpm sounds horrible!!! My goodness. I've noticed my doctors don't look over all my meds or conditions when prescribing something new so many times they prescribe stuff that makes dysautonomia worse. My urologist has done this many times so now I'm very wary and look things up like the GI doctor prescribing something for constipation that take more fluid out of the vascular system and leaves warning not to take with POTS....... Glad it's helping your mother. I took Nortriptyline and Cymbalta for years, never helped with pain. I've also tried gabapentin (too sedating) and Lyrica but they didn't help either. In high school, Vioxx helped the most but was taken off the market; back then they gave me anything and really tried to help it's sad what's happened.

https://www.healthrising.org/blog/2017/04/15/saline-pots-chronic-fatigue-syndrome/

I have stopped doing the salt tablets in water for now because I've done it for years and it just makes me nauseous. The cardiologists always tell me to drink loads of fluid and I can't because of my bladder which already keeps me from rest, sleep, and I am in constant horrific bladder pain. I wish I could drink all the gatorade in the world because it does help but it's not an option. When I was at Mayo getting ready for scan I had to have full bladder and drank about 4 bottles of water that morning and I was flared for a few days because with IC our bladders are so sensitive. I wouldn't complain but it has cost me so much sleep and simple things like not being able to go to the movies or concerts b/c of going to the bathroom so much. In my state they won't give any pain medication for this condition they want to do amitriptyline, a tri-cyclic anti depressant, but when I asked a group of IC patients about weight gain they collectively said they gained about 50lbs and it didn't help that much plus it interfered with my other medications; so I think it's sad that people are left in pain so often. The good news is the saline iv's help so much and my body retains it and it actually helps my bladder and I actually don't go to the bathroom so much and overall it helps tremendously with getting more cerebral blood flow, the bad news is the doctors won't do it for me and I need a port. Everything I've read said hey it's just saline the side effects are minimal but they are just worried about ports.... In regards to IC there isn't much treatment because they don't know what causes it and the one FDA approved medication for it called "elm iron" was recalled because it made long term patients start having terrible vision and eye problems and I took it for years without any benefit, glad I quit it when I did.

I only get shelter dogs too. Both Callie and Toby were from the shelter. Yea Toby hasn't really realized what's going on but in time I think he will miss her as they were best friends....... Here's a photo from 7 years ago when they were young and spry.

Well the problem is I have severe Interstitial Cystitis and I can't drink anything with acidity, citric acid, potassium, cabonation, caffeine, etc. So I can't drink electrolyte drinks or anything flavored with fruit and V8 is tomato based and all would flare my bladder for weeks then I would be urinating every 5 minutes. Unfortunately I am limited to water, salt water, and vanilla almond milk and that's it. I also have bladder problems from the dysautonomia like bladder outlet obstruction so it's been a mess for me trying to get any rest or sleep since I was very young.

So ridiculous!!!!!! These doctors need to become informed and do some research!!!!??????

I can't retain fluid just urinate it out so I have to drink filtered Walter with salt tablets dissolved in it. Still I'm going to the bathroom constantly. If I get saline iv's that is the best treatment for me thus far. For me it's never enough salt, my blood pressure is still desperately low. My ex boyfriend used to urinate a lot as well and I told him to increase salt intake and it helped, we both have the same rare blood cancer. Edit: Also there is a thing called "low blood volume POTS" and I read about a guy getting saline infusions every week and after a year with continued infusions he recovered.

I just wanted to update because this is getting weirder and weirder. So my testosterone tested normal most recently but DHEA tested extremely high and has tested high in the past like 10 years ago. I did 24 hour urine for catecholamines and the epinephrine is way too low and the neurepinephrine is barely in range so the E+N total was way too low. I'm very confused because my mom sees I have this constant adrenaline and then I'm barely sleeping these days. I have a good endocrinologist fellow at Mayo but I'm so concerned like what is going on?

Yea I'm having great difficult finding anyone and most have horrible reviews online and in a FB florida dysautonomia group my mother is in. There is a Jacksonville Jaguars football player whose wife has POTS and I watched a video and he is a big supporter for awareness etc. but the neurologist they had on the news just talked about fluid intake and salt and it's like um no, my case is so severe I can't even sit up or stand for more than 5 minutes without passing out. So frustrating.

On a whim my urologist gave me rapaflo which is normally for men but it helps with urination and it fixed a lot of my urinary problems and it took away my nightmares but I started getting very dizzy upon standing then I began having near syncope so I had to discontinue. I found out later it was an alpha blocker but it was mostly only supposed to affect my bladder but it was terrible for dysautonomia. It has been the most effective for my urinary problems and ptsd but I couldn't tolerate the lowered blood pressure. For my bladder I could use the bathroom and actually feel empty for the first time in decades!!! Very sad I can't take it because it helped with bladder pain as well. Nothing else helps with my nightmares either. It's very hard because we have to duck and dodge medications that could help in one aspect of our lives but make dysautonomia so much worse. An endocrinologist recently wanted to prescribe me something that would lower blood pressure and I had to keep telling her I can't take it and I had to keep explaining, we really need some awareness!

I don't know. I get it too. I start having neurological symptoms with it as well, tremors and weird movements in my hands. Very bizarre.

Thanks. My other dog is getting sick too. It's part of rescuing animals but still tough.

Thank you. I am already at Mayo for oncology and endocrinology. I tried to make an appt with a local cardiologist who had a review that said he was great with POTS and they set me up with someone else and couldn't tell me if he treated POTS, they had no idea what I was talking about with "dysautonomia", "orthostatic intolerance", etc. Edit: And so sorry you lost your insurance.

Thank you both. I don't have social media so I'm glad I could share this here and get support. And you can see of course that she and my last living dog make up my screen-name not just here but many places.

My dog passed away tonight. I will leave some lyrics, a song, and a photo. ""And how the grace with which she walked into your life Will stay with you in your steps And pace with you a while So long, so long So long, so long" - Dashboard Confessional

In new city (I'm moving) we stumbled across a place that does hydration infusions and I'm so so glad b/c the doctors won't do it but also they would do vitamins and simple things like zofran. Zofran is very good for nausea so maybe if you find one of these places you don't need a prescription as I just paid for the lactated ringers saline iv and a NP administered it right then and there and that helped with the tiredness from the trip. They said with membership I can get up to 3 times a week so that's what I'll do.

I have double and I literally went from housebound for a decade to being able to leave my house and do things with treatment so I don't think it's too big a deal. It helped me dramatically. My folate on recent labs is also extremely low and you have to use methyl folate, my mother is a nurse and said that having double is when it's worse and needs treatment. I'm just speaking from personal experience, it helped me but I get side effects from everything I take including supplements and vitamins. A woman at my church is a nurse and had a patient recommend deplin and said it helped her health drastically as well. My PCP was actually concerned but she prescribed normal folate which is wrong in the treatment of this mutation that's why I mention methyl folate which is what helped me in conjunction with methyl B12 and niacin which is a mild vasodilator. Edit: I also don't know if it helped the POTS or the many other diagnoses, I have so much going on it's hard to say, one thing is it definitely helped with fatigue and OCD.

So I know I need methyl folate combined with methyl B12 and niacin but they make me so tired and weird feeling sick feeling during the day then cause insomnia at night. For awhile I powered through and took these meds at low dose at night and it got me out of the house when I was housebound and spent a lot of time in bed. I was prescribed regular folate by my PCP and it hasn't helped. Anybody else have the mutation and how do you take the supplements? I can't figure out the right time to take them, maybe at dinner time. I am also so so sensitive to these things I'm on tiny pieces. B12 tends to make me tired and not energizing. Edit: I am posting this because I saw on a forum that a young woman got a lot of help with her dysautonomia treating the MTHFR with methyl folate which I found to be true for me in the past.

Thanks so much! I still don't have a dysautonomic doctor but I'm anxious to start treatment and this will be on the list to mention.