Still looking for dyautonomia doctor.... Jacksonville, FL.

[CallieAndToby]

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. 

[cmep37]

56 minutes ago, CallieAndToby22 said:

I've also tried gabapentin (too sedating) and Lyrica but they didn't help either

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.

[CallieAndToby]

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. 

[Pistol]

2 hours ago, CallieAndToby22 said:

and Lyrica caused my aunt to gain 50lbs in like a month but she was really bloated looking it was odd.

@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. Being afraid that something can happen to you b/c it happened to someone else can also have negative psychological effects on a medication. 

[cmep37]

14 hours ago, CallieAndToby22 said:

It seems like I haven't really tried tramadol either, do you have experience with this one?

Yep, I took it for a while before being diagnosed with hEDS and starting a programme of regular physio exercises which have helped stabilise some of my joints.  It is quite a bit stronger than co-codamol and it did leave me a bit woozy after taking it - it did help a lot with the pain though.  My GP's not very keen on it long-term - she says the kidneys have to work very hard to process it so I would only take it now in a crisis rather than as a regular thing. 

In terms of new drugs, I try to give them 4 weeks - if by then I still don't get any benefit or I've had unbearable side effects I'll chat to my doctors and if they think it's worth continuing I'll persevere for another month but if at the end of that I'm still not convinced I will stop.  Obviously that wouldn't apply if I had a really bad reaction to them! My attitude generally is that I'll give anything a go - with dysautonomia our bodies work in very individual ways so what helps a "normal" person or even another person with dysautonomia may not suit me but at least I have tried it!

[CallieAndToby]

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. 

[cmep37]

 

14 hours ago, CallieAndToby22 said:

The myeloproliferative neoplasm causes bone pain which is different than the nerve pain.

I understand what you mean but I find many doctors don't!  I find it really hard to explain to doctors that I experience different types of pain (I get both joint/muscle pain and nerve pain from hEDS)and that they respond differently to different pain meds.  For me the nerve pain tends to kick in in the evenings whereas the joint/muscle pain is much worse in the mornings. They seem to think that one med should help with both - generally it doesn't! 

Have you tried a TENS machine?  I'm not sure how exactly you'd use it for IC pain but some people love them and they are relatively inexpensive.  For me I've just got too many areas that cause me pain to make it effective - my GP jokes that I'd need a full body TENS suit rather than just a small pad! 

[CallieAndToby]

On 8/2/2021 at 9:52 PM, 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.

Hello just wanted to mention that I saw a cardiologist today who has a great reputation named "Dr. Robert Luke" with Ascension hospital in 2 locations and it went really well. I found him by simply googling and someone left a review saying he is the best with POTS (in Jax) and the most compassionate. He knows the medications well. And when he heard my story about the cancer medication I took that lead to my extreme health decline, he also suspects an infection and has referred me to neurology right away as well as describing that my seizures don't sound like dystonic seizures at all. He has good bedside manner and he takes time with patients because we had to wait an hour to see him but I don't mind because he is taking time with each individual patient which is recounted in his reviews online. The office was run so efficiently as well, I got a wonderful man afterwards who scheduled me right away for my halter monitor but said he'd have to get insurance approval for echocardiogram. 

[POTSie78]

5 hours ago, CallieAndToby22 said:

Hello just wanted to mention that I saw a cardiologist today who has a great reputation named "Dr. Robert Luke" with Ascension hospital in 2 locations and it went really well. I found him by simply googling and someone left a review saying he is the best with POTS (in Jax) and the most compassionate. He knows the medications well. And when he heard my story about the cancer medication I took that lead to my extreme health decline, he also suspects an infection and has referred me to neurology right away as well as describing that my seizures don't sound like dystonic seizures at all. He has good bedside manner and he takes time with patients because we had to wait an hour to see him but I don't mind because he is taking time with each individual patient which is recounted in his reviews online. The office was run so efficiently as well, I got a wonderful man afterwards who scheduled me right away for my halter monitor but said he'd have to get insurance approval for echocardiogram. 

That's fantastic news! I'm so glad you found a great doctor😁