CallieAndToby

I haven't slept much in 2 weeks. 

2 hours ago, cmep37 said:

I've never found any doctors to help me either @CallieAndToby22.  I've seen who passes for the autonomic expert in my area and he has admitted he has no idea what to do with me as I've gone beyond his level of expertise.  Last summer my GP sent my Holter monitor scans to him when I was severely bradycardic and he just wrote back saying it wasn't life-threatening!  He won't prescribe IV infusions as he says they are too high risk re clots/infections.  He is an EP cardiologist and to be fair he did take my case to a multi-disciplinary conference about 18 months ago but no-one there made any useful suggestions either - they just suggested I have CBT to cope with living with a chronic illness!  My GP said I could probably give CBT myself I have had so much experience of learning how to cope!  I am considering seeing a US consultant via Skype or Zoom as I certainly have exhausted all other options but it's not ideal if I need to ask further questions or I have side effects from any meds prescribed.

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. 

11 minutes ago, Pistol said:

@cmep37 this so accurately describes what it is like! The exact same thing happened to me: do a bit, realize it was too much, recover with rest and when feeling better start this same scenario all over again! But thankfully - as you - I have found a way ( with medications, treatments and strictly following my limitations ) that I now know what I can and cannot do, and by listening closely to my body I can avoid flares for the most part!

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. 

On 5/21/2021 at 10:25 AM, Amyschi said:

Hi - know this post has been awhile, but did you ever talk to the doctor about this?  I get this in attacks, usually if I have done something more physical - keep awakening with tachycardia, internal shaking, muscles jerking, anxiety and extreme chills.  I believe its possibly adrenaline surges.   I've also seen people say this is related to adrenal fatigue, so that is why I am curious as to the endocrinologist's opinion - I know there is the whole thing with dysautonomia as a result of disruption of the HPA axis? ? Thanks. 

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. 

2 minutes ago, tigger2512 said:

Thank you,

   The EP doc had mentioned the tilt table test but nothing was happening with covid.  

    I'll see if the toporol helps for now.  Lucky for me I have a local Walmart because i don't go very far the last 3 years since this started. 

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? 

On 5/11/2021 at 9:56 PM, Ashc said:

Sweet.

Have you tried painting on clothes or bags and maybe sell some merch?

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!!! 

On 5/7/2021 at 5:16 PM, Nin said:

I think you're a really strong person as you've been through so much. Just keep riding the storm...better days soon will come. Looks like you get sun, here it rains and rains and rains. Love the lizard pic, I love lizards (I have 3 different types)

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. 

On 5/11/2021 at 9:55 PM, Ashc said:

Been wanting to do this. Actually, at some point, this is all I want to do. 😄

Yea I'm with you. I'll lay on the beach all day!!! 

10 hours ago, Pistol said:

@CallieAndToby22 - sorry, I have no words of wisdom. I took guanfacine 0.5 mg twice a day for several years, without any side effects. I ended up having to stop it b/c my BP ended up too low. I had no insomnia from it, but we are all so different. As to a different vasodilator - I take Diltiazem, that has been very effective for me, and also has helped to stop my seizures. 

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. 

22 hours ago, KiminOrlando said:

@CallieAndToby22 Thanks for the info. My family lives within a couple of hours of UAB so maybe one day I will make an appointment. I have been toying with looking in to a Dysautonomia doctor there or Vandy. UAB seems to have a good autoimmune disease department as well, so I am tempted to go there despite Vandy's reputation. My doctor at Vandy retired so I would be starting over.

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? 

2 hours ago, Sarah Tee said:

Thanks, @Delta. Sorry you had some bad experiences. It sounds like you have a good person to rely on in your neurologist.

You are right, any supportive medical person would be good. Thus far the best person has been my endocrinologist. She is fantastic and she is the one who referred me to the dysautonomia specialist. I kept hoping that I would have an endocrine cause so that she could treat me, but nothing showed up.

Am seeing new GP/PCP on Tuesday, so fingers crossed that he understands or at least sends me to a cardio.

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. 

19 hours ago, KiminOrlando said:

@CallieAndToby22 Is the scientist working on LDN at UAB in Birmingham? Do you happen to know their name?

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. 

19 hours ago, Pistol said:

Thanks for sharing, @CallieAndToby22 - really nice pictures!

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.

On 5/5/2021 at 12:17 PM, Nin said:

So sad that trip done you in like that. So frustrating. But well done for going! That beach looks lovely....shame my beach don't look like that 😕 

 

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. 

1 hour ago, cmep37 said:

When I did my TTT my HR was 174 after standing for just over 10 minutes - the junior doctor decided to stop the test at that point as there was no sign of my HR slowing and he felt it would be dangerous to continue.  I was begging him to continue, worried that they wouldn't have got enough data after just 10 minutes but he laughed and said they had seen all they needed to....  I've had much higher numbers (180BPM+) on a 24 hour heart monitor but one of the first cardiologists I saw (who didn't know what POTS was) tried to tell me that the machine must have been faulty?!

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. 

52 minutes ago, POTSie78 said:

I also have narrow pulse pressure and my drs ask if I feel ok?  Ummm...no I don't feel ok lol.

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. 

On 5/3/2021 at 3:33 PM, Healthixir said:

I love the feeling of laying down at the beach and the sounds of the waves calm me

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.