CallieAndToby

I haven't slept much in 2 weeks.

I'm sorry to hear all of this! Are you in the UK because I have a lot of friends with chronic illnesses like ME in the UK and they're constantly being told to do CBT and not getting the medical help they need, it makes me mad, but sadly things in my particular city and not any better. I was treated as a psych patient for a decade and it really messed me up. The problem with dysautonomia is it's just rare and hard to understand and complex and there aren't many doctors here either or centers of excellence. I wish I knew who to suggest for you. I think they should do saline iv infusions without a doubt for most of us, I have read article after article from prominent autonomic doctors like Dr. Rowe who say saline iv's are the best options or refractory POTS and I can tell you first hand they help me a lot and they even help me to sleep. I can't even wear the compression stockings b/c the climate I live in is so hot but I have found the abdominal binder to be very very helpful and if you want to know the brand, send me a pm. Someone told me about the correct one on FB and it's been wonderful and so easy to put on and off.

I have bad OCD and pain so I've tried every single SSRI and SNRI. I will say that I took Cymbalta for years and it didn't do anything for me personally. I ended up weaning myself off of it and there was no change. Sorry I don't have better news but coming off of SSRI's and SNRI's is not difficult compared to when I came off of atypical antipsychotic zyprexa or try-cyclics. Cymbalta does help some people with pain.

Thanks guys. The problem is I don't have an autonomic doctor or really only 2 doctors and I've become too sick to go to appointments at least at the moment. My new PCP is in another city and that trip 1 1/2 months ago has totally wiped me out. Then my local neurologist is content with having referred me to Vanderbilt 11 months ago and in the mean time he doesn't do anything. Beverly Karabin can't do telemedicine out of state any more so..... I would love saline iv's I just have nobody to prescribe them and I have only 2 accessible veins. For me when I'm this crashed I have extreme trouble sleeping, vicious cycle every day. I'm glad you found the right stuff to help @Pistol . I definitely could use the saline iv's it's just always been refused to me in my city b/c they don't want to deal with ports and infections, etc.

I just lay down. I mean I know it sucks but that's my only option. I have a lounge chair outside that I lay on and I have a wedge to prop my legs/feet and I can lay outside at least. If you can take it easy and lay on the couch. I have been having major trouble sleeping and I agree that benzos really help with our condition.

So I've been talking with a friend on the phone and I've been in a crashed state for 2 weeks, can't sleep either. So I just had to tell him I can't chat, at all. Then today I tried to watch an interview on YouTube and half way through I crashed. I don't know what to do any more and being left to my thoughts all day is not going well for me and my psychologist says that with people with OCD and depression related to chronic illness they tell them to distract themselves but I can't do anything. I went from being a working musician in my teens and early 20's to just getting worse and worse and now I can't leave the bed or listen to music. Saline iv's would help but I don't even have an autonomic doctor of any kind. Do you guys get these neurological + physical crashes after very minimal mental or physical exertion? Last year I could swim but after 30 minutes of swimming I'd be stuck in bed for days recovering so exercise is something they always tell POTS patients to do but it makes me worse. I know it's called "post exertional malaise" but it's just terrible.

Oh you know I was referred to 3 endocrinologists in my city and they all denied my referral. Now I've been accepted to Mayo Clinic in Jax and I have to wait till July. They think I could have adrenal hyperplasia or PCOS, the adrenal hyperplasia makes a lot of sense to me symptomatically though.

The tilt table test is a standard for testing, if you can do it, it may help guide towards an accurate diagnosis. There are many different types of Dysautonomia. And yes this Covid thing has made everything difficult.

You have to see an autonomic / dysautonomia specialist. A normal cardiologist or neurologist (at least in my city) don't know anything. If you can get to a center but the waiting lists are beyond long. It sounds like you were put on a beta blocker, is your heart rate high? The problem is they do lower blood pressure but I had to take one to lower a constant state of tachycardia.

So my hormonal imbalance has caused terrible acne and my skin is very sensitive. I could never use most natural things and for awhile I could use an aloe vera acne gel that was all natural but last time it burned my skin. I use very delicate soap for sensitive skin when bathing but doesn't help with acne. Any tips?

I have an etsy shop but what sells the most are vintage clothes. I haven't listed anything recently. I can't paint actually my mother is a painter but she's very busy. I have a friend who paints rocks and they sell like crazy on etsy.

So guess what?? There is a working pay phone in downtown Jacksonville, FL. I had to go for an appt and we stopped somewhere, I saw It covered with beautiful tagging and graffiti, but this shot just begged to be a black and white. It actually works too!!!

Thank you so much. It's been very difficult most of my life but especially lately. I had to go to another appointment so I've been wiped. Yes well I live in the "sunshine state' so it's definitely sunny but we do have bad mosquitoes, love bugs, pythons, alligators, and hurricanes. Yea I'm with you. I'll lay on the beach all day!!!

Thank you for the suggestion, I guess I wanted to know there were more options out there. Guanfacine is also making my blood pressure too low. I will look into the medication you suggested.

So I have a love hate relationship with this medication. I only use it in emergencies now like when I'm having seizure activity but man this drug at just 1/4 of 1 mg causes terrible insomnia no matter what time of day I take it. It makes me so tired and worn out and exhausted. Has anybody had any better success with a different vasodilator? I also know it's going to take a combination of things. I'm extremely sensitive to medication and they build up in my system over time and side effects just get worse. Oh it also helps my bladder and bowels a lot, but the insomnia becomes unbearable and I tried taking every other day.

I asked my PCP 6 months ago to refer me to UAB's autonomic lab stat line and he never did. So I'm waiting on Vanderbilt but the seizures are getting longer, more frequent, and it's just not good. What were they able to do for you at Vanderbilt?

I would definitely pursue it. In my city they will only do it once a month for POTS patients which I don't think is helpful enough but I guess it's better than nothing.

I can look it up right now. His name is Jarred Younger and he has his own MEpedia. "American researcher who leads the Neuroinflammation, Pain and Fatigue lab at the University of Birmingham, Alabama" Edit: as I remembered from years ago, one of his areas of research and expertise is with LDN.

Thanks.

Some other photos I edited. There was a lime green picket fence and the anole (lizard) can camouflage and blend in with pretty much any neutral colors. So that was cool to see.

Yea I don't think I can do another trip until I get better but it was worth it, I think. Thanks. People actually consider this a not nice looking beach compared to places like Destin (where I don't live). But Destin is like one of the top 10 in the world so they always compare. I'm just happy with sand and sea. There are a lot of very difficult personal things happening in my life and family and I'm just struggling not just physically but mentally.

Yea I'd say no too. My local cardiologist was supposed to know about dysautonomia and her lack of knowledge and treatment and neglect made me drastically sicker. She never did any testing except poor man's tilt table test and made a POTS diagnosis (wrong diagnosis) then threw me on a bunch of random vasoconstrictors which was the opposite of what I needed. She always pushed gatorade and stockings and I told her every time, "I have severe interstitial cystitis I cannot drink gatorade all day long, half a bottle will flare me for weeks." She refused to do saline iv's even though all the other doctors were doing them and it would've saved my life; I got referred to another cardio and she called me up and said once I was established with her I couldn't see anybody else (massive ego). I am deteriorating too, I have seizures and fainting all the time plus being bed bound and unable to sleep and I've been waiting on Vanderbilt for 10 months. So it's a waiting game but 3.5 months isn't long, can your GP do some things in the mean time, he should be able to order local saline iv's at an infusion center in the mean time? We have an infusion center here that my PCP can just order for me. I have a neurologist and he knows zilch about dysautonomia and won't do anything to help, this is so hard for all of us. I kept telling her that IVIG helped a lot and had no clue that there was potential testing for that for dysautonomia. I'm exasperated and exhausted and very weary.

I'm so sorry it's this bad for you too. I'm glad you mentioned that they had enough data. I've been worried too not hearing back from Vanderbilt and I pushed myself to get four different days of data, I had to stop autonomic meds, it was brutal and I'd be crashed after this 15 minute testing. I complete a tilt table test like 15 years ago and I felt like I was dying the entire time but I wasn't nearly as sick as I am now, it's very heartbreaking to get worse. Lol, it's not funny but yea they like to ask ridiculous questions. My 2 current doctors don't even care about anything that's going on.

Definitely!!! Thanks for the response. The beach is a place of still and calm and peace. I still haven't recovered from this trip so haven't been able to post on here.

I didn't know they could measure pulse pressure but last month I did some poor man tilt table tests for Vanderbilt and they could not feel my radial pulse (at the wrist), they couldn't feel the pulse at my neck, the machine couldn't detect much either and my blood pressure was dangerously low at some time the bottom number couldn't be detected. My mom is a registered nurse and she grabbed a stethoscope and put it on my chest and counted my HR was up in the 160's after standing for 6+ mins. When I did the first testing in the neurologist's office I passed out and hit the floor after about 7 minutes of standing and it's a hard hospital floor. Still no word from medical professional or clinic.