ChiariMSwithPOTS

Hi all, I thought it must be nice to make some SKYPE friends with Dysautonomia. Looking to SKYPE with positive people. You can message me privately if you're interested in SKYPING. Kol

Didn't have an option of saying High Blood Sugar at the 1 (218) and 2 (211) hour mark and then later crashing to 64. Probably now they know why, because of the gastroparesis.

Definitely had a case of the JELLIES today, arms and legs. My Gastroparesis was acting up, I'm ovulating so my tachycardia is up to 100 bpm. :-P Also some chest discomfort, sometimes when I take a breath too. I'm hoping this POTS/GP thing fixes itself soon.

OMG! I had this too! I thought I was alone. I have Gastroparesis and mainly constipation but if I have diarrhea, I get all my tachycardia back.

Hi all, Thank you for the replies. Magnesium is something to look into. I know that 2 cans (10oz) of Prune Juice just gives me strong diarrhea, so maybe cutting that to one can, every other day might help me. Along with making sure I drink enough water. I got frustrated and went back to eating beans, and such, now I'm having cramps, softer stools (at least I'm going though), urgency, etc. And my tachycardia is back. Maybe I'm tachy from eating the fiberous foods because it's working harder to digest, eh? I can have the Benefiber because I also have Celiac disease and trouble swallowing. Might look into the Miralax. I'm just a little reluctant because I have MS and whenever I've been on stool softening meds it was pasty and I would have some incontience. It just got too messy. I know I'll find out what works for me. It's a matter of experimenting and time (and patience). Thanks again.

That's a very interesting finding. Maybe something to look into. I just thought it was just because I'm special.

I had a 2 hr glucose tolerance test as well, but then they found out that I had gastroparesis (slow stomach emptying) and that explains the blood sugars. My 1 hr blood sugars were 214. But my A1C is 5.1 which is really good. So it would depend on your A1C levels. Otherwise, I'd look into gastroparesis.

Same here. What supplements do you take, Sally?

OK, so I finally figured out what's going on with me, why my POTS has returned. I have been having trouble with swallowing, getting too full fast, reflux, etc. These are the same symptoms I had before I had my brain injury surgery so I equated it with my brain injury. After surgery I was able to eat so much better. Now, after 6 years, I'm having my stomach issues back, as well as the POTS. So, my gastro doctor recommended that I get a stomach emptying test. It showed that I still had 64% of my food in my stomach at that point. So, after looking up the gastroparesis diet, and them mentioning softer pureed foods, etc. I did that so a week, and for a whole week, I was constipated. Ugh! However, I did have a respite from my tachycardia. Tonight, I couldn't stand the constipation any longer, so I took 2 cans of prune juice, it did the trick, I cleaned out, but I also noticed my tachycardia returned and dizziness (that had been gone too). It's so frustrating and not sure what to do, because softer foods helped me feel better, not feeling as full, helped the tachycardia, etc. But it made me constipated, but if I eat the more normal foods, I feel full, feel tachy after I eat. Most likely the constipation was from the liquid diet and lack of fiber. There has to be a happy medium in there somewhere. If anyone knows, please share it with me. Thanks.

I'm 34. Sounds like me. I'm not on birth control. There's something about hormones and Chiari. The last time I was on them, I got horrible headaches. I guess it can add pressure. That's good. I'm going to ask her if there's anything I can do, because I'm not ever going to be pregnant and the ablation already took care of the period. That's lesser on my list of problems. Thank you for the reply.

OK. I have Arnold Chiari Malformation. I had surgery in 2004 and maybe in 2005 or 2006, my cardiologist was amazed, because I didn't have any more signs of POTS. That my brain regenerated and the pressure was relieved. So, I was enjoying being without POTS for years. Possibility #1) In June, I went on this diet that was low carb and low calorie and I messed up my whole system. I wasn't producing enough dopamine and because of that, I had insomnia and myoclonus. I've noticed that when I have ovulation, PMS, Period, I'm more anxious, moody, etc. And my hormones never bothered me before that. I never had PMS symptoms. I never knew where I was in my cycle (I stopped having my period a couple years ago because I had an ablation). So maybe it's possible that it created my POTS to come back again. Possibility #2) I am having some high pressure symptoms again. So it's possible that the high pressure is creating the POTS again. Possibility #3) I've been under a lot of stress since June. I'm wondering if anxiety/stress can be the sole cause of POTS coming back after being dormant for years. Anyone want to chime in?

Yeah, I focus on my AC and that puts me to sleep. That's one of the things I focus on. Thanks for the reply. I just have to relax.

What the heck? We can't laugh now? Is there any tricks to this? Any medications that work for it? This is ridiculous. I haven't had POTS in YEARS and now it's back full force. Can anxiety be the sole cause for POTS?

How do you fall asleep when you're tachy? I sleep with two pillows (to support my neck - as I have to sleep in a recliner. I can't lay down because of a brain injury) and I've found that putting my hand over my heart I don't feel the heartbeat as much (because the pillows make me feel it more) and I love sleeping on my left side, but because of the pillows, the pillow presses on my jugular, making me hear the heartbeat. Sometimes I just try and focus on something else. Sometimes it works, sometimes it doesn't. Anyone have any tips? Thanks.

I have Aspergers, so yes, I get over stimulated. And I also have dizziness issues, so I learned just to tell myself, "If you are dizzy, know that you're safe and you have the ability to know whether you need help or not." And that helps me not panic when I get dizzy. May help you.

I have Chiari. I had a 6mm herniation but it looked like Chiari 0 on the MRI. Plus I had 10x the amount of pressure they thought I did when they put in my shunt. I'm 6 years post op and I have POTS because of Chiari and Ehlers Danlos. Or maybe it's just because Ehlers Danlos is connected with Chiari. I haven't done the geneology of it, LOL. About 2 or 3 years after my surgery I showed NO signs of POTS. Now all of a sudden it's back. I'm not sure why. I don't know if it's because of some adrenal/hormonal problems I had in June (it's corrected now, but may have trigger the POTS again) or I'm having intracranial pressure again with my Chiari. Either way I'm going to get to the bottom of it. If you do have Chairi, you have to have major headaches, trouble swallowing, dizziness, and more. I wouldn't seek it out unless you mainly have the major headaches.

Onvulation time again and wouldn't you know, tachy! So apparently that is my trigger. I also noticed it during PMS and my period, so basically I have like a week where it's OK. *Sigh*

I can tell the difference because when it's only anxiety I'm able to deep breathe and the tachy goes away. But if I try to deep breathe and I get MORE tachy, I know it's the POTS.

I've noticed that I get very tachy when I'm having ovulation. I don't know if it lasts into my PMS/Period stage because my POTS started back up again after a couple years of it being gone. I had some adrenal imbalances and it brought it back. Is ovulation and tachy related, because of the hormone changes?

I have trouble with deep breathing only when my POTS symptoms are flaring up, like during ovulation/PMS/period (even though I don't get a period, I still experience hormonal changes). That's how I can tell if my racing heart is from POTS or from anxiety.

Lois - I wish I was able to find something that agrees with me. I took Atenlol and I'm allergic to it. I also took Clonidine and ended up with vericose veins and chest pains. I'll ask my neuro if there's anything that I could take. Mom - I was definitely in overload. I took my inhaler and that set everything off. Wow, we are on the same wavelength. Lukky - I know what you mean about your HR just doesn't want to slow down. Last night, I did Reiki and Hypnosis and even those weren't working enough. And good idea about keeping quiet after you take the BB. I do that after I take my inhaler. I always sit still and not move around. Speaking of which, I guess I'll have to lay off my inhaler at night unless I really need it. Sometimes I take it just for preventative measures but obviously shouldn't do that. I swear sometimes I feel like the albuterol (the last 7 years) gave me the tachycardia to begin with. But I know I have the POTS too because of my Chiari. So it's like the chicken and the egg. That's a good idea about the tv/movies at night. Thanks. Jacquie - Yeah, it's awful when it makes you more groggy the next day. Thanks for responding all. I really appreciate it a lot.

I am *so* exhausted! The last two nights. I haven't been able to sleep because of my tachycardia. I have POTS so it's effected by position. Last night I didn't fall asleep until 2 or so. And the night before that was 5:30! And when you're tachy, you get nervous which only makes the tachy worse. And being fatigued makes tachy worse, so it just seems like an endless cycle. Can anyone else relate? And do you do anything about the not sleeping? Thanks in advance!

THANK YOU ALL FOR RESPONDING!!!! DOCTOR IS WEANING ME OFF CLONIDINE. IT LOOKS LIKE THAT'S THE CASE THIS TIME, OR IT'S A GOOD GUESS. I TOOK ALL OF YOUR SUGGESTIONS. THANKS AGAIN FOR ALL YOUR RESPONSES!!!

Hi Everyone, I haven't been on this message board for a while. Life, as it does sometimes, gets hectic. One of my lasts posts I mentioned that my doctor was weaning me off Clonidine, because he thought it was the cause of the Clonidine. Well, I was off Clonidine for about 3 months and my phlebitis didn't change. So I went back to him and my BP was up and my HR was up, so he's like, "Time to go back on the Clonidine." And I agreed, because it's no fun to have your heart racing and I felt more comfortable on the Clonidine. Now, to the vent at hand, since I started Clonidine again, the last two days, especially today, like a half dozen times, I've gotten chest pain!!! I mean pain that makes you say, "WOAH!" and it's very uncomfortable. I don't know if this is because I'm adjusting to the medicine again or not. I think I remember back when I first started on it, that it happened a few times like that. I mean we all have chest pain from time to time, even when I wasn't on any meds, and it's a royal pain, because your first instinct is to grab your chest, LOL, it does look a little funny to see that from someone else's perspective. But it's only quick pains, so you know you're not having a heart attack, but still! It's so annoying. Has anyone found any quick fixes for chest pains or have experienced chest pain while starting on a medicine for the first few days? Let me know I'm not alone. I need you guys. Thank you in advance for the responses.

Hi, I agree with Gena. Get the blood work, or biopsy (obviously the more invasive way to go). Ugh, Gena, sorry you had a dumb lazy doc.