Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by Pupmum25

  1. I use a headband called the Halo from Koldtec- it comes with removable engineered ice packs that you can customize for thickness. I love it- it’s really helped when I’m having bad headache days. I also use a roller called Migrasoothe- it’s essentially peppermint oil, so you could always try that as well, but it also helps a lot! I’ve also found that edible peppermint beadlets help me as well- you let them burst near the front of your mouth and it creates a wave of a cooling sensation throughout your face and head- so relieving! I used those a lot when I first became symptomatic and my headaches were so bad I could barely keep my eyes open. I hope this helps, and I hope you get some relief very soon. ❤️
  2. I’m so sorry you have to deal with both conditions. 😣 I have OCD and dysautonomia as well, and I know how debilitating they both can be. I do feel that my OCD has worsened since developing dysautonomia; although we believe I’ve had it my whole life (as most do according to my therapist because there is a genetic component), I’ve never had it even remotely as bad as I have since becoming sick. I’d assume that having autonomic dysfunction can play a role, especially if you’re not getting as much blood flow to the brain. I do also have PCOS, so for me there is a hormonal component that I think affects things as well. I am so sensitive to meds that we’ve tried to keep me away from antidepressants, as the last time I was on one I had side effects that my therapist and I both don’t want me experiencing again. As the previous individual who responded said, exposure response prevention is supposed to be the gold standard treatment. I’ve been doing ERP with my therapist and it has helped a lot. Unfortunately, with OCD the only way “out” seems to be through, much like dysautonomia in that you kind of have to ride the waves, which ERP teaches you to do. My counselor did also recommend NAC (N-acetylcysteine) for me to help with the OCD; obviously not medical advice, but I have been taking it and I am doing much better than before. Of course everyone is different and you should talk to your therapist or doctor before trying anything. I hope you can find some relief from your symptoms and feel more at peace very soon. ❤️
  3. @Pistol thanks so much for the reply! I underwent autonomic testing at Mayo Clinic back in November and those results indicated no HPOTS. However. I wasn’t as symptomatic the week I was at Mayo Clinic, unfortunately-as weird as that sounds to say. So I didn’t experience the typical adrenaline rush feelings that I do during flares when I was there going through testing. So as of now, I have a standard POTS diagnosis but I experience these wired / rush type of feelings off and on, I just wonder if the testing “missed” something since I wasn’t in a flare during my visit at Mayo. I’m glad to know I’m not alone in experiencing these feelings though! Currently not on meds- I manage symptoms with salt, lifestyle mods, etc. We’ve tried Midodrine which I reacted negatively to, and was told a beta blocker wasn’t ideal for me since my resting hr goes so low (50s). So still kind of in a limbo with treatment.
  4. Hi all! I have POTS, diagnosed back in 2017. Since my onset of symptoms, I’ve had issues while eating and after eating with dizziness, tachycardia, etc. However, recently I’ve started to have this really uncomfortable feeling after eating; the best way I can describe it is being extremely “wired”, antsy, hyper or restless; almost like the feeling I get with adrenaline rushes sometimes when I’m standing / walking, but it lingers instead of being a quick spike. It makes me feel like I want to crawl out of my skin. It’s such an uncomfortable feeling and obviously unsettling. I was also recently diagnosed with PCOS back in November, and was informed I’m at a higher risk for diabetes, etc. I’m worried I could be having some blood sugar issues or insulin resistance, but I’m not sure if I’m thinking too much into it, or if this could just be part of POTS. I have had a similar experience with this feeling before with certain medications, etc. But just wanted to see if anyone else experienced this. Any input will be appreciated! Thanks :)
  5. Diagnosed with POTS just over two years ago. Does anyone else get the sensation that your throat is swollen/closing off? It feels as though the muscles surrounding my throat are swelling up or are very inflamed. This happens when my symptoms flare badly. I’m not sure if it is due, in-part, to acid reflux or muscle spasms. Muscle spasms are common for me personally, so maybe this is my answer. However I wanted to know if anyone else experienced this. It’s one of my scarier symptoms since it can make it hurt to talk and can feel like I can’t swallow or breath well at times. Any input will be appreciated.
  6. My sister who also has POTS just started taking supplements for adrenal support and credits them for the improvement she’s experienced. She’s very enthusiastic about it and wants me to try them as well. I’m awaiting some blood work to come back so I will probably consult my doc about it once we have results.
  7. Anyone have aggravated (or improved) POTS symptoms while taking Clindamycin? Just started my first dose this evening. Overall, no terrible reactions as of now compared to what I’ve experienced with other medications; I’m hypersensitive to many medications since my diagnosis. So far, I have a heaviness in my chest/heartburn/acid reflux-type symptoms and some mild cramping. Just wondering how others have responded to it. Thanks!
  • Create New...