janiedelite

It does seem to hit all at once sometimes, doesn't it?! So sorry for all you're going through with your family. I hope you can take care of yourself, too! Janie

Ami,

Thank you for letting us know how things are going with your family. You have such a wonderful way of giving updates while eliciting tears of laughter, pain, and sympathy at the same time! Thank you for your beautiful perspective on situations which might keep others from getting up in the mornings... , Janie

Very well said, Jump.

I tend to crash about 2 days after a strenuous or stressful event. There are some stressors that can't be avoided (like spending all day upright yesterday while my mom was having a hospital procedure) and some stressors I don't want to avoid (like staying up late with friends I rarely see). And there are so many factors that can affect how we respond to activity/stress like the temperature, seating, and if there is time to totally rest for the day or so following. Sometimes I feel horrible and can't think of anything I did to cause it!

I know each of our illnesses affect us in different ways and to different degrees. For me, I have to look at the big picture and figure out what makes me really happy. If I have to push myself to accomplish something that I'd regret not trying to do, then I do it and prepare for the aftermath of worse symptoms. Only you know your body and what your limits are. It's good to push to your limits on a regular basis, but only you can decide when you push too far.

Thanks so much Maxine, BellaMia and Jennifer for your kind words and prayers! Mom and I are looking forward to many happy days ahead!

Good news! The colonoscopy went fine and the doc says that other than some scar tissue she has no obstructions. The intussuception on the CT was probably just normal bowel peristalsis that folded in on itself a little more than usual because of scar tissue from her abdominal surgeries.

Yay! Life is back to "normal."

Oh, so sorry for the rough time you're going through! I just wanted to explain the catecholamine test I had done at Mayo. Catecholamines are the hormones put out in response to stress by your adrenal glands and they are norepinephrine, epinephrine and dopamine. With POTS, our adrenaline kicks in every time we're upright in order to try to keep blood pumping back up to our brains. The adrenaline hormones work to raise heartrate, peripherally vasoconstrict, and cause all the uncomfortable symptoms like sweaty, cold extremities, nausea, palpitations, etc. They should do the test by inserting an IV needle and having you lay in a quiet place for 1/2 an hour or so. Then they'll draw a blood sample. Then you get to try to activate your POTS symptoms by standing, walking, etc. for 10 minutes or so and they draw another sample. It's usually our norepinephrine level that raises the most on standing, and with POTS levels of 600 or more are common. Of course, the supine levels are much lower.

For me, this test didn't really help by directing any treatment but it confirmed that I do have hyperadrenergic POTS which is why I feel the way I do!

I hope you can get rehydrated quickly!

Just talked with Mom and she still has some prep left to drink, but she says she doesn't feel much worse than she does on her "bad" days. She's in good spirits!

Mom has her colonoscopy tomorrow, so send prayers/thoughts for peace and health please! She's doing the prep now and has the option to get admitted if she needs for IV fluids and electrolyte monitoring, but she can usually drink plenty and she has electrolyte packets to add to her water. Hopefully she can tough it out at home.

She's been really trying to put on weight and her diet is so limited so she's been drinking liquid tube feeding all week and has put on 4 pounds! Liquid tube feeding... she's one tough cookie!

I haven't had the heart to tell her that if they do find an obstruction or intussuception they'll probably keep her in the hospital and do surgery asap. She's so anxious about fluid/calorie loss from just the colonoscopy I don't think she can deal with thinking about another surgery right now.

I'm going to be with her and Dad at the hospital sitting around in waiting areas (fun), drinking salted gatorade, and I'll bring meds in case I start to flare.

I hope we can get whatever this blockage is resolved soon. I just want her to have a happy life.

Thanks guys.

Hugs to you!!! I hope things start lookin up soon!

So Liz, did they tell you what was causing your small blood vessels in your brain to obstruct? Do you have high cholesterol or any other signs or arteriosclerosis? Plaque lining your small arteries is the most common cause of small vessel disease, but anything that obstructs your small vessels can be a cause including aneurysms or abnormal constricting or dilating of your arterial walls. If you know what's causing the small vessel disease then you can treat it. If you have too much plaque lining your arteries that calls for a certain type of treatment. If you have too much dilating or constricting of your small vessels then the treatment is totally different. I know that since I've developed POTS, I have overconstriction or overdilation of my blood vessels.

For me, I know that emotional stress can be a big trigger for worsening my POTS symptoms. And when I started midodrine, it really lessened my fatigue initially but by the end of a week it was like taking a sugar pill (but it caused other problems for me so I had to stop). Maybe you need a higher dose?

I'm sorry about your mom's health crisis... be sure to take care of yourself, too! I can relate and feel free to PM me if you need. I have to make sure to spend regular time relaxing and staying "at peace" through stressful times like these. It sounds like you have a lot on your plate with POTS, your mom and a busy job.

And like Dani suggested, lots of salt, fluids and compression...

I went to sleep last night at 10:30pm and woke at 9am. I try to not nap during the day because my sleep is so fragmented at night, I want to be as exhausted as possible so I can hopefully get the deepest sleep possible. But I usually wake up feeling more tired than when I went to bed.

Hi Gary,

I'm also an RN and had to quit working as a critical care nurse because of my post-viral/neuropathic POTS. I totally agree with your theory of immunosuppression. My mom developed small fiber neuropathy as she came out of remission for carcinoid syndrome 4-5 years ago. I developed small fiber neuropathy 4 months after having mono and 1 month after a bad car accident. Obviously, mono suppresses your immune system. My WBC's were 2.4.

In our case, I think there is a genetic glitch that was triggered by some event that suppressed our immune system (mono in my case, cancer in my mom's), which triggered either a genetic predisposition toward an autoimmune response or allowed a harmful genetic trait to emerge once our immune systems were compromised.

I was given the post-viral/neuropathic POTS diagnosis at Mayo, and I hope I can recover although I haven't seen recovery yet. And if there is a genetic predisposition toward neuropathy then I may have the more usual waxing and waning others experience. I was glad to finally be diagnosed with neuropathy as all the other experts in my area were at a loss to help me. I do think after years of research, the POTS experts have found common pre-POTS incidents (like mono or trauma) and they don't actually know the specific underlying cascade of events that takes place in our bodies that would actually cause POTS. I will never give up trying to learn more about how this debilitating illness occurred in my family. I know I'm not a researcher in the official sense. But I don't think I can ever give up on trying to figure this out! Feel free to PM me anytime.

Interesting what you said about suppressing the sympathetic NS does to help your symptoms. I don't think I have any disorder of the brainstem, but I do know that standing norepinephrine levels are high (1089) in compared to supine (250) which reflects an intact sympathetic response to my being upright (and all the pooling that occurs because of my neuropathy). I haven't taken benzos because I think they would make me feel great and I would want to take them all the time. I do take benadryl, though, which helps suppress my adrenaline symptoms (tremor, nausea, palpitations, etc.) without making me drowsy. I always was drowsy on benadryl pre-POTS. Although, like you said, my heart rate is as abnormally high as ever even on benadryl. You're right in thinking if we could suppress all the extra adrenaline, we probably wouldn't feel all that bad. But my Mayo doc says my high adrenaline levels are actually a good thing because they represent a healthy sympathetic NS, which unfortunately some folks with dysautonomia don't have. I don't think I'd want to trade places with them.

Good luck and take care, Janie

Hi Angela,

I haven't been formally diagnosed with fibromyalgia, but I have very bad muscle pain in more areas than the normal POTS coathanger pain. The one miracle drug for me was Lyrica. Unfortunately I couldn't tolerate the side effects but I didn't realize how much pain I was in until the lyrica took nearly all of it away! Neurontin helped somewhat also.

You hubby was so sweet.... I'm glad you're feeling a little better today, Janie

Thanks, Summer! I couldn't get to the original article because I'm not a member of Medscape. But the second link you posted with the response to the article was very informative and pretty much told me what the article was about. Just more affirmation to us POTS patients that the problem is NOT in our head!!!

Add me to the list! For whatever reason intense conversation and laughter make me feel funny I find that if I talk for a period of time, like when explaining a story, I feel my BP rise and my face feels flushed. I will feel pressure in my head and need to take a few deep breaths. Laughter does the same thing...especially if something is really funny! Sometimes my facial muscles will spasm as if I don't control them (smiling for pictures triggers this sometimes as well) My body feels very strange and out of it after I laugh or talk for too long of a period of time. I'm "glad" to hear that others have this symptom!

Last week I needed to give a presentation to 30 co-workers...needless to say my nerves were a little jarred! I had asked to do the presentation sitting down to avoid becoming too "potsy," but about 3 minutes into explaining my work with consecutive talking, I began to feel odd. My ears went out and it was as if I could only hear myself in the distance. My face felt flushed and I felt my BP rise and I probably had a shocked look on my face, but I tried not to react to my symtpoms and keep talking. I'm sure my co-workers noticed but I paused after I was finished with my sentence and I literally felt myself returning back to "normal" gradually. I wonder what attributes these odd scenarios to POTS? It really knows how to mess with every part of daily functioning doesn't it?!

Wow, Michele, you really described what happens well! I'm glad you were able to sit and recovered fairly quickly. Having an "invisible illness" stinks, huh? Who would think talking would be impaired! My husband feels badly for me when I'm flared and have to rest quietly, but I think he kind of likes the quiet too...

"Sophia, I asked him about the connection between sleep disturbances and CFS/dysautonomia/fibro and he said that there isn't any known connection. Even though he is touted as the local "expert" I don't think he's really up on the latest research."

WOW. No offense but the fact this "sleep expert" said these words shows what a POOR UNINFORMED doctor he is. It has been talked about in CFIDS journals and sleep journals for YEARS the lack of restorative sleep and or alpha-delta intrusion issue. Also with FM.

Sorry he was a dead end. Mercy. I was told back in the mid 90''s of the sleep problems with CFS AND FM. I did not yet have my dx of Autonomic dysfunction back then. But at least my sleep doctor had a clue.

Yeah, it's unfortunate. I know I have sleep disturbances, but at least I know they're not lethal like sleep apnea can be. I could tell from my initial appt with this doc that he didn't have any idea how ANS disturbances affect sleep so my expectations weren't very high. I'll go back to Mayo if my symptoms get worse where people don't look at me like I have 2 heads when I talk about dysautonomia. I'm thankful for my PCP who suspected dysautonomia in the first place and for the neurologist who sent me to Mayo.

Thanks, Miriam. I'm mostly glad that the doc ruled out apnea, but I'm going to get a copy of my records in case more problems arise. I'll keep in mind about following up with a pulmonologist.

Janie

Suzy, thanks for the encouraging advice about communicating around your kids. . As for hubby, when he calls to me from another room and I'm having a hard day, I just stay quiet and he comes out and asks what's wrong. Then I politely, and with a smile, remind him it's hard for me to shout. You're right though, he's practically perfect in every other way! I try not to get frustrated with him, and he's so patient with me in return.

Carinara, there certainly are some days that are worse than others in the talking respect for me, too. I bet it's hard to play the flute with this disease!

Have a good day, Janie

I've had upper cervical/occipital pain since my early 20's after a bad car accident, but the pain was pretty manageable with advil and chiropractic. After POTS set it, I noticed that every day at 2-3pm I was needing advil and still having neck pain and muscle tiredness up there. I also have crepitus there (where you can hear the bones grinding). Now I spend a good part of my day reclining so the pain and fatigue isn't so distracting. Advil and heat help, too.

Since my more recent car accident (which resulted in 2 hip surgeries) my lower and mid-back has become more of a problem than my neck. By the way, I was a passenger in both of these accidents and in the first one we were rear-ended and pushed 20 feet into the car ahead, and in the recent one we were T-boned by an old lady who ran a stop sign. I now drive a Buick.

I have also been getting a lot more of the falling sensation as you go off to sleep. It isn't like when you nod off in class and startle awake, but the feeling like you are falling many feet (like off the bed). This does wonders for startling me and jumpstarting an ANS overreaction when I don't need it (not that I often do ). Sometimes this is multiple times a night... It is very annoying! Do others get this often?

Okay, I was actually talking with my sleep doctor about this TODAY because it happened 2-3 times last week during my sleep study. He said that feeling of jerking awake during phase sleep sometimes is accompanied by the feeling of falling also. I notice it very frequently when my symptoms are flared. He said it was simply a result of being over-fatigued. For me, I notice it more often on days that I'm having more adrenaline/sympathetic symptoms. If anyone else has insight into this, I'd love to hear it!

Shortly after my POTS symptoms began, I started having vivid nightmares EVERY night that someone was trying to kill me. Since getting a diagnosis I still have vivid dreams most every night but they aren't usually so violent. Often, though, I find myself driving in my sleep over some bridge that appears to dead-end over a canyon or cliff, or I get lost while driving. Often my dreams are extremely emotionally or mentally taxing, and I can relate to feeling more fatigued afterward than when I went to bed.

If I go to sleep when my pain level is high, or adrenaline is pumping, my sleep and dreams totally reflect this.

Thanks guys. It's helpful to really know that this symptom isn't so rare. Yes, bizbiz and ana, laying down does help the symptoms subside. If the phone rings, I try to make sure I'm laying down before I answer it so I can stay laying down. Although often I still get more symptomatic even if I lie down during the conversation.

And yes, Kansasgirl, my hubby will try to talk with me from another room and it seems to take so much energy/breath to project my voice. I just remind him to come closer to talk so I don't have to project my voice and it's not so bad.

We went for a walk this evening and I notice that while talking, it seems so hard to catch enough breath to walk. I'm thinking it's just the physical act of breathing enough to talk that makes this so difficult. I used to sing all the time (in choir, around the house, at church, etc.). Now at church, I just sing the words of the hymns in my head. Regulating my breath to hold a note while singing is nearly impossible most days. It must just be another result of thoracic hypovolemia...?

Thanks guys, Janie

Hi Suzy,

Yes, my head feels like it is straining. How do you manage this symptom and talk with your kids on a regular basis? My hubby and I are actually thinking of maybe adopting an older child and I'm concerned how this symptom would interfere with being a mom.

Thanks so much and have a good evening, Janie

I was wondering how many dysautonomia folks here deal with increased symptoms as a result of talking (whether that be phone calls, talking with family, etc.). What kind of symptoms flare up with talking? Does anyone have any suggestions for avoiding these problems while talking?

For me, talking makes my neuropathy worse (especially the burning in my face and mouth). My face and head turn warm and will flush. My BP goes up and my chest gets tight and hurts. My head hurts more and my whole body feels hot. It feels like an exaggerated adrenaline rush.

This issue is one of the main things that keeps me from living a more normal life. It's so annoying and often debilitating! I love to talk and am VERY opinionated! I've even wanted to teach nursing someday, but can't maintain a 10-minute conversation without laying down in a quiet place to reduce my symptoms.

Thanks for giving me a place to voice my opinion without talking

Janie

Okay, I did my sleep study last week and I just got back from my appt with the sleep doc. He said I didn't have any apnea, and I guess I slept on my back for half of the night after all! My oxygen levels were normal all night. I also had normal amounts of time in each sleep phase, including REM.

Sophia, I asked him about the connection between sleep disturbances and CFS/dysautonomia/fibro and he said that there isn't any known connection. Even though he is touted as the local "expert" I don't think he's really up on the latest research. And even though he's a neurologist, he knows very little about dysautonomia. But to his credit, he admitted that he really just doesn't know about CFS or related issues. He said "the medical community is very good at treating sleepiness but fatigue is another thing altogether. We just don't really know what causes it."

I also told him that I practiced his restricted sleeping schedule and that my neuropathy pain, orthostatic tachycardia and fatigue worsened as a result. He didn't really know what to say was the cause of my morning fatigue (what I described also as a "hangover feeling"), headaches, body pain, etc. I told him I assumed it was a result of morning dehydration and muscle pain from the back and hip injuries I've incurred. He said that there's nothing he can do to help me with my fatigue/brain fog since my sleep study was normal.

So I've gotten a diagnosis at Mayo, did a sleep study to rule out anything else. I don't think there are any other tests I can have done !

Stick a fork in me and pull me out of the oven... I'm done,

Janie