CallieAndToby

28 minutes ago, MTRJ75 said:

I don't think he'd do well in a kennel. He's not small and a little bit crazy. However, I took that idea and just found a site that you can book people to come check in on your dog. It's kind of like an uber for dog sitting. 

I absolutely want to go, I just don't know how I could have possibly handled an hour and a half trip in the same condition I was in this morning/afternoon. 

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. 

22 hours ago, Pistol said:

@CallieAndToby22 - dont be afraid to try a med b/c someone else had a reaction I am on several meds that agree with me but completely turned other people upside down - and vice-versa, some meds have helped others but they make me very sick. You never know how a med affects you until you try it yourself. 

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. 

7 hours ago, cmep37 said:

Oddly enough I was going to suggest both of those - I've tried them but preferred my usual co-codamol 30/500 (the worst side effect it gives me is constipation!).  Everyone talks about opiods and addiction and how over time they no longer work but after almost 20 years I am on the exact same dose I started on and I still get benefit from it.  I do have tremendous sympathy for you - I know if I am in a lot of pain with a dislocation or subluxation it makes my POTS symptoms much worse too as increased pain seems to upset my ANS.  The thought of suffering that kind of pain every day with nothing to help is terrible.

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. 

15 hours ago, Rexie said:

You might find the topic of cortisol dysfunction of interest:

Chronic Stress, Cortisol Dysfunction, and Pain: A Psychoneuroendocrine Rationale for Stress Management in Pain Rehabilitation, Kara E. Hannibal and Mark D. Bishop, Phys Ther., Vol. 94(12), pp. 1816–1825; 2014

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4263906/

For 40 some years I have had adrenal insufficiency and took hydrocortisone for low blood pressure, etc. every day. It has gotten much better the last few years with better nutrition, better pain management (I switched from bacopa herb to 50 mg tramadol, half in the morning/half in the evening) and the herbs I take. Now I only use hydrocortisone as needed for blood pressure drop during illness, interstitial cystitis flare (too much vitamin C is a killer for me, the max per day I can have is about 30 mg Vit C - one needs only 10 mg Vit C/day or less to prevent scurvy), heat stress, or life stresses. 

 

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". 

18 hours ago, cmep37 said:

I was offered this for my hEDS pain - I took it for a couple of months and it did help but I had to stop as it made my POTS much worse.  It gradually raised my resting heart rate quite a bit - from 60ish to 90ish - I was still getting the same 80-90 BPM rises in HR after being upright for a few minutes though so as you can imagine at 180 BPM it was not pleasant!   My mum takes it and thinks it is really helpful but then she doesn't have POTS... 

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. 

4 hours ago, MikeO said:

I would be concerned about getting an infection with a port just not sure what other concerns are?. I go a lot even seems at times after peeing i go and pee again. even with my latest trip to the ER for a fall the fluids they pumped in went right thru me. So only thing i can do is to replace the fluids i get rid of. if i don't i get really fatigued and feel ill

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

3 hours ago, MikeO said:

So sorry you have to go thru this. I did not know. Yes the electrolyte drinks can be harsh on the stomach i do have days where i can not tolerate them.

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. 

On 8/5/2021 at 5:31 AM, Pistol said:

@CallieAndToby22 - we only get shelter animals, cats or dogs. When my last dog, a lab, died from old age my husband wanted to wait before getting a new dog. I couldn't wait any longer than 3 months and we got our current shepard mix, Pal. she turned out to be the best dog one could ever have, calm and sweet and smart. She now is getting old and we are waiting for her to get to the point of no return. When that comes my husband wants to wait again but not I - I have found that getting a new dog right away helps with the grief. Especially of you are left without ANY dog! So I will give him a few months to grief and then - off to check the local shelters! --- I hope your dog toby doesn't miss Callie too much? 

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.  

12 hours ago, MikeO said:

I know never an easy solution. I am just glad i don't need the IV's. As to peeing i do it a lot but have found a balance between taking water and other drinks and the color of the urine. I don't take salt tablets because of my heart too much and i pump to hard. I do drink electrolytes which help. Vitaminwater works for me. no sugar or salt and plenty of B vitamins to help the nervous systems maybe?. Sleeping at a 30 degree angle at night helps as well. and as usual when in the mood will drink a hot V8 cause i can

 

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. 

3 hours ago, Pistol said:

yep.-, that's what dysautonomia treatment boils down to for the general medical community, no matter what the specialty is. In their mind all POTS patients ( NCS, OH etc all the same ) need to do is drink water and eat salt, and maybe take a BB. If that does not work it's on the patient, or maybe in the patient's head. Nobody but an experienced and well informed autonomic specialist wants to look further. IMO this is b/c if they DID look into it they would have to acknowledge that everything they learned up until the 1990's was only half baked. And which doctor would want to admit THAT?

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

1 hour ago, MikeO said:

Oh i do. Just pointing out to be careful with salt. By all means i do understand the blood volume and BP. I am just doing the same a different way.

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? 

2 hours ago, POTSie78 said:

@CallieAndToby22Thank you.  Hope you find a good Dr close by soon.  I don't know Jax very well.  My EP is in Daytona.  He's been the only one that has helped me get some relief but so far it's been limited to the usual.  Propranolol,  salt and fluid and an ILR.  

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. 

15 hours ago, dancer65 said:

So sorry to hear you lost your adorable dog they are such a big part of the family . Sending hugs across the pond x

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

10 hours ago, POTSie78 said:

I saw Dr Cheshire in Jax Mayo's Neuro department.   He deals with dysautonomia but couldn't help me.  He wants me to see their cardiologist because I had an abnormal exercise tolerance stress test. I haven't gone yet because I just lost my insurance since my employer let me go over all this.  Once I figure out getting insurance again I will let you know who they send me to.

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. 

7 hours ago, Pistol said:

So sorry @CallieAndToby22! I know how much it hurts to loose your best friend! 

6 hours ago, Jyoti said:

Nothing quite like it, in my experience.  Take your pain seriously, give yourself all the time you need and can to grieve your beloved Callie and be gentle with yourself.  I am so so sorry.

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. 

5 hours ago, MTRJ75 said:

I have it (just one I think, some have double?) and after reading so much about how important it is, the most recent stuff I've read suggests that a lot of people are probably making a bigger deal out of it than it is because they're finding so many people have the mutation. I seem to remember reading something about glutathione and even remember trying that for a while (and it wasn't cheap), but didn't notice any difference at all. 

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. 

On 7/27/2021 at 4:20 PM, Chiara said:

When I took Mestinon it helped me for obstipation. 

 

On 7/27/2021 at 6:45 PM, MikeO said:

Mestinon will help with constipation. it does also carry other benefits as well. just be sure to take it with substantial amount of food. Food will flatten out the drug curve and give you a better response.

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.