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About CallieAndToby22

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  1. 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 a
  2. 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?
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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 do
  8. 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 g
  9. 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.
  10. 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 min
  11. I've been in therapy for the past 15 years. I really didn't find the right therapist until the past 5-6 years. I didn't make any progress with many others. I developed OCD out of nowhere years after getting first ill and I went to the University OCD clinic and made a little progress and have followed up with my current psychologist; he mainly helps with my health stuff, he's pretty incredible. He got me a connected with a nurse case worker with my insurance to help with everything. We don't really talk about OCD much any more just what I'm dealing with atm. There are people in my family that r
  12. With the help of saline iv and abdominal binder I was able to make it to the beach for a bit. I laid down mostly on a beach blanket but hey that is totally normal because everyone else is doing it! Post exertional malaise today but I needed some bit of sanity and calm. Some of the photos I'm attaching are unedited but I was able to bring my camera and take some photos.
  13. I have a lot of friends with very severe ME and dysautonomia and klonopin or Xanax seem to be the best at helping with PEM. I found out accidentally spending a year in bed and deciding one day just to take a little bit and it really helped. Whitney Dafoe is probably the sickest ME patient and once a month he takes a benzodiazepine and he's able to communicate b/c it clears up brain fog, they don't know why.
  14. I agree with @Pistol that supplements and even vitamins can have serious side effects! I think I've had worse reactions to supplements than actual medication. With that being said things that have been pretty safe for me are: Vitamin D3 and Omega 3 gummies that also have DHA, EPA, and a bit of turmeric. Both vitamin D3 and omega 3 fish oils increase cerebral blood flow but just make me feel better. I take a magnesium supplement at night as well and it helps with constipation. I have the MTHFR genetic mutation and I was prescribed L methyl folate, methyl B12, and niacin. I can't take normal B12
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