flowntheloop

Does anyone else (with a cycle) struggle with tachycardia or flares near specific times? I’ve been keeping a journal of symptoms, and I have my nocturnal tachy episodes and sleep disturbances increase every cycle right around my ovulation. Like most tachy episodes, last night started with intense coat-hanger pain. No amount of massage or ice/heat could quell the tension or discomfort. I felt extremely anxious for no apparent reason, and I couldn’t focus on television or the book I tried to read. (I am autistic, so sensory overload is not rare. However, this was quite overwhelming in comparison to my usual. )The sense of dread and fear and confusion that comes with these episodes is just awful. When I finally tried to go to bed, I felt pressure in my neck and head, and my pulse was beating so hard and fast through my entire body. It took double my usual dose of lorazepam to get me to calm down enough to get to sleep within a couple of hours. The intense episodes typically last 45 minutes to 2 hours and are so exhausting. I’ve seen my HR go above 165 and have sustained over 125bpm for the majority of the time.  
 

I’m still feeling tachy and anxious today as well, and I just want a break from the symptoms. It feels like there is very little room in my cycle to be symptom free! How do I bring this up with doctors? I see a cardiologist on Feb 2, but I feel like any time I bring up these sorts of connections I am shrugged off. 

@CallieAndToby22I am so sorry for all that you are going through right now. *gentle internet hugs* I'm sure that this huge pile of stress is not helping your symptoms either! I hope you can find some doctors who are willing to listen and work with you to get you feeling better! I definitely feel worse with any medication changes (heck, even food changes).

In the meantime, are you in therapy and/or practicing daily self-care? (TOTALLY NOT SAYING THIS WILL SOLVE YOUR PROBLEMS LOL). I know how hard it can be to find the time or energy to take time for ourselves, but we really need it when we are in a constant battle with ourselves! I actually have to set an alarm on my phone to meditate/practice breathing exercises every day.

20 hours ago, Knellie said:

  I have been having a lot of GI issues lately - bloating, indigestion, heartburn, nausea, abdominal tenderness, etc. I told my doctor about how a lot of people with dysautonomia have gastropariesis and he thinks that I could have that as well. But if I got diagnosed with that, is there any treatment? I am already on a PPI as of right now, but it doesn't help a lot. Also who would diagnose that? Would that just be a Gastroenterologist? Thanks in advance

 

@Knellie You would see a gastroenterologist, yes. PPIs typically don't help with this condition (more with the reflux that CAN go along with it).  I don't take them as I don't have reflux, and I did not respond at all to them.

My helpful tips:
1) I HIGHLY recommend you keep a food diary and log any symptoms that pop up in response to eating certain things. Getting a "SAFE LIST" together will be one of your most useful tools! My "safe list" is quite small (and can shrink even further under times of stress or flareups), but it can take so much of the burden off of eating.
2) Eat small meals and space them out! I split my meals in half on a normal day. I eat one half at a sitting, the other half 45 minutes to an hour later. Also, don't eat too close to bedtime (especially if you have reflux/heartburn). During flares you may have to quarter your meals instead.
3) If you introduce anything new to your diet, do it slowly and in small quantities. I was on a liquid/mush diet for several months this spring/summer, but I have graduated to some soft solids now. I have slowly found some safe foods that feel rewarding and decadent!
4) Track your calories (even if for a few weeks or a month) to be sure you are getting the nutrition you need. If you aren't, find a protein/nutritional shake that you can stomach.
5) Add breathing exercises and/or guided meditations into your daily routine. I've noticed they can ease my symptoms (at least a bit) and can help me get more food down that I normally would.
6) Chew gum / suck on lollipops after meals and drink lots of water.
7) Gentle walks (if you aren't too dizzy) or floor stretches can help the food get moving after meals as well.

12 hours ago, CallieAndToby22 said:

Really great! I love the first one! 

Thank you! That one actually glows in the dark and under a black light I gave it to a dear friend a couple of years ago.

On 3/8/2017 at 1:04 PM, elfinko said:

Does anyone have experience with a dual diagnosis of POTS and Autism in a teenager? We have a 16 year old boy on the spectrum. He is verbal and high functioning. He  was diagnosed with POTS in late 2015 and we've seen increased violent meltdowns ever since the diagnosis that have resulted in half a dozen ER visits for psychiatric evaluation. The latest incident was 4 days ago. Early on he was prescribed Florinef and that seemed to help a lot with many of the symptoms (back pains, stomach pains and general exhaustion). He is still taking it, but lately a lot of the fatigue, stomach aches and headaches have begun to return.

I'm becoming increasingly convinced that the POTS symptoms are setting him off and he's just unable to verbalize the anxiety, so he acts out violently. It's like a switch goes off in his brain and he turns into a different person. This can last for 30 minutes. It can last for hours. He is able to speak, but he has a tough time being very specific about the discomfort and the prescribed Adavan doesn't seem to help him, which makes me think it's the POTS, since Adavan isn't going to address any of his POTS symptoms.

I'm not looking for any specific answers. Just trying to gain some insight into this dual diagnosis. Very frustrating to see your child suffer like this and mom is getting afraid to be alone with him lately.

 The POTS hit him like a ton of bricks. I've never seen such a drastic change in personality before. It was like he fell ill overnight. That quick.

@elfinkoFirst of all, I'm so sorry that your son is going through this. I am autistic, am on the hypermobility spectrum (possible hEDS), and I am seeing a cardiologist on Feb 2 to assess POTS symptoms. From what I'm hearing it is very common for autism, hypermobility (hEDS), and POTS to occur together. Is your son hypermobile by any chance?

My tachycardia and low blood pressure episodes definitely DO play a role in autistic meltdowns/shutdowns. As you probably already know, we are very easily overloaded-- so EXTRA sources of sensory discomfort can be disorienting and absolutely exhausting. Ativan is helpful in lowering my health anxieties whilst in the midst of flareups, but of course does not help my underlying symptoms. I wish I could offer the perfect advice, but I'm still trying to find my way through this as well. Here are some tools that help me with my dysautonomia symptoms:

1) Breathing exercises (at least twice daily). I use the Balance app, and the 4-7-8 breath technique works best for me. Helps calm my autonomic nervous system to some extent and can sometimes get my HR back down and quell the other symptoms a bit.
2) Video therapy at least once a week. It isn't a cure for any of my autonomic issues, but it is nice to be able to vent to someone about them.
3) Create a sticky note or note card with a list of things that my husband can do to help me during flareups and meltdowns/shutdowns. I often go nonverbal during these times, so it can help to have one on hand!

On 4/22/2011 at 2:09 AM, Chaos said:

Over the past several years I've had episodes of feeling like I have a tight band around my throat...kind of at the "adam's apple" level, or near the thyroid area. It comes and goes and I've never been able to identify what causes it or what it was related to. However, with all the MCAD questions floating around these days, it's made me start wondering if it could be a "mild" form of anaphylaxis? Anybody else have anything like this? It does make it a bit harder to swallow and breathe, but I don't feel wheezy like an asthma attack. I keep finding myself reaching up to try pulling a tight turtle neck sweater away from my throat....but I'm not wearing one! Nothing touching me anywhere near my throat. Don't think it's anxiety as it's happened during yoga classes when I'm very relaxed and calm and I'm not a particularly anxious person in general.

Any ideas??

(I have suspected an MCAD type reaction associated with my POTS, but don't think it's the cause of my POTS. Rather, when the POTS is uncontrolled, I have nearly all the symptoms on the list for MCAD. I'm supposed to see a mast cell specialist at Mayo in a couple of months.)

I started having a similar issue back in February or March, when my dysautonomia symptoms kicked into gear really hard. I figured out that (for me) it is something called globus sensation. It can lead to dysphagia (swallowing problems) and a weird sensation in the throat. For me, it felt really tight all around my throat-- and at times I felt a crawling sensation. I had trouble swallowing and thought I was surely going to choke. I still get it when I am really stressed, and I got it MOSTLY under control by doing breathing exercises/meditations twice daily. Have you noticed any particular poses in yoga class that bring it on? I'd definitely talk to your doctor if you suspect it is allergic in nature! How scary for you!

@CallieAndToby22 Are you feeling any better the past few days?

Type the @ symbol in front of someone’s name, and a drop down should appear.

Eye dilation makes me feel awful! Sensory overload, dizziness, head pressure, and nausea. I once had a doctor only dilate ONE of my eyes, and it was such a horrible experience. I could barely hear all straight and got really bad vertigo! I looked like a David Bowie-esque freak to boot! I saved photos of it because it was so wild!

1 hour ago, Pistol said:

@flowntheloop -beautiful - you are so very talented! 

@PistolThanks! I haven't had a lot of energy this year for creating, but I hope I can get back in good health so I can enjoy it again.

Merry Kissmas / Happy holidays! ❤️ I'm new here, but I already feel at home! ❤️

It is honestly so sad that most doctors do not take more of our symptoms seriously. 😢 If I smacked doctors every time they shrugged or told me "It's just part of being on the hypermobility spectrum or fibromyalgia", I don't think I would have an arm left. 😜 I'm really hoping that 2021 brings me a better medical team (with an understanding of what is going on in my body).

I've tried valerian, and I'm not a fan (makes my skin feel like it's on fire). I'm not sure about the others you listed.

I totally understand. I'm also hesitant to try medications due to side effects, but lorazepam literally saved my life back in 2006. (Note: I cannot take other benzodiazepenes due to rebound panic reactions!). I had not slept (or had REM/deep sleep) in over a month, and I was dangerously underweight due to eating issues. My GP had tried every antidepressant/anxiety medicine at her disposal, and I even checked myself into a psych ward because I wanted help so badly (I checked myself out the next morning due to poor/abusive treatment). I was so weak and exhausted that my husband had to carry me, and even my bodily functions were failing (I was wearing an adult diaper because I lost bladder control). The last ER doctor we saw decided to administer lorazepam, and I was able to sleep and eat again within the hour. I took low dose (maintenance dose) lorazepam for 8 years off and on. It wasn't something I ever had an issue "needing", and I even stopped getting it filled for several years. This year, I started experiencing very similar symptoms (along with a lot of new ones that have developed in the past few years) to 2006. I'm now struggling to eat and sleep again, and I once again had dramatic weight loss (my GI doctor thinks it may be a motility issue). I also want to mention that I'm autistic and get sensory overload, so health problems can be pure h*** for me---which only exacerbates my symptoms further. I have been in weekly therapy and have had a strict meditation practice since March of this year, but sometimes I'm just unable to cope with the burden of chronic pain and illness. I made the decision to see a psychiatrist again for sleep help just this last month, and I'm so relieved to have that emergency backup if I really need it. It isn't something I take daily or even weekly, and it is one medication that I KNOW doesn't make my symptoms worse! It is extremely useful when I have tachycardia episodes in the middle of the night and think I'm dying. LOL

1 minute ago, RecipeForDisaster said:

I don’t have a problem with this one, and I took 10mg extended release last night. Taking 1mg isn’t always enough, as in, I don’t feel a difference. That sounds scary. I have had a kind of similar experience with tramadol... but my usual very low BP episodes don’t sound like yours.

Thanks for pitching in, RFD. I was given Tramadol 15 years ago as well (it was a very desperate situation with my sleep back then), and I don't remember it being particularly helpful for me.  I don't remember it causing this sort of reaction though. Ambien, on the other hand, was absolutely terrifying for me.

Why do I have to be so dang sensitive to medications?? The only thing that has ever helped me with sleep without causing adverse effects is lorazepam (which I still take when needed; obviously not last night due to taking melatonin). I guess I'm just a little disappointed that this wasn't something that could help me.

@Pistol It is pretty miserable, isn't it? I feel trapped in my own home when it is too hot outside (which is often where I live) or too cold! I've found ways to get outside during winter, but I look like the kid from the Christmas story.

In summer, I depend on my AC, but I have to wear warm clothes when I sit near them so I don't get flareups! If I DO have to get outside in summer, I can get VERY ill. Even walking the dogs for a couple of minutes in the sun can make me sick for several hours.

3 minutes ago, Ashc said:

That look! 😆I wonder he's thinking.

He was handing me his paw and hoping I would give him a treat Or do you mean her looking at him funny?

I have been hearing from multiple sources that melatonin may be helpful in the treatment of POTS, so I figured I would give it one last chance. I had not tried it in nearly 15 years--and my last experience with it was during a time in which my ANS was going haywire after getting viral bronchitis. That experience was not a good one, but I figured something might have changed since then.

I took 1mg of melatonin around 45 minutes before bed last night. I quickly began to feel groggy, unable to keep my eyes open. I felt really heavy, but I would not say that I felt comfortable in any way. I noted on my fitbit that my heart rate had dropped around 10bpm from my usual. Lights went out at 845pm, and I started my usual breathing meditation. I was confused and scatterbrained during the entire meditation--so I just decided to just try to get to sleep. Unfortunately, the following 5 hours were more like a waking nightmare. I felt like I was either going to float away or sink into my mattress (not in a good way), and it was quite difficult to breathe. It felt like my breaths were very shallow and short. It was a very similar sensation as when I've had my BP bottom out whilst taking muscle relaxers (I cannot take them for this reason). I was in a wakeful hallucination, and it was quite terrifying. I finally got to sleep somewhere around 1 am, but I started awake with a tachycardia episode and breathlessness at 2 am. AN ABSOLUTELY MISERABLE EXPERIENCE. Note: This was almost the exact same experience I had 15 years prior to this. I'm wondering if all of this could be due to my low blood pressure?

Does anyone else here have a similar experience with melatonin?

I can't deal with either end of the spectrum. My safe temperature zone is ~65-77F.  I'm typically very cold (have poor circulation and Raynaud's), but I get extremely ill (and get flareups) when I take hot showers or when exposed to hot temperatures.

I'm 5'7", 118-122lbs (trying to gain some back), 39 year-old female.

@CallieAndToby22They are all so precious! 

@Knellie awww! So snuggly!

Some of my mixed media art on canvas

My furbabies! Snorri & Mazzy!

@Pistol WOOHOO! I'm so proud of you! As a nature lover who has been deprived of her passion (on more days than not), I can totally sympathize with the joy you are expressing here! I really miss my solo walks and hikes in general.

@merkat30 I'm here to talk anytime! We are in this together!

@Pistol - Very interesting!

I am still seeking a proper diagnosis (I have been struggling with mystery symptoms for 2 decades now that doctors have mostly chocked up to "anxiety" and "mental health issues"). I only recently (through my hypermobility spectrum disorder support group) realized that POTS (and possibly even hEDS) could be causing a large share of my symptoms. I'm still learning! I am impatiently awaiting my first appointment with a cardiologist (Feb 2). I have a LOT of medical trauma, and I'm just hoping to be treated with respect and concern for once.

If you have the time/energy, I would love to hear more about your story and how you went about getting diagnosed and treated!