MeganMN

Hey gang, Wanted to ask about a weird symptom set that I have been having. Intermittently for the last year or so, I have been waking up in the middle of the night with a weird symptom set and wondered if anyone else experienced it. I wake up with a start with tachycardia. It almost feels like a panic attack but it wakes me from a sound sleep. I get tachycardia, shortness of breath, epigastric pain. Then I eat some TUMS or Mylanta, and have diarrhea (no cramping) then all the symptoms slowly subside. Weird. Just wondering.

Thanks to everyone for your wonderful words! Sometimes it helps just to be able to vent it out there. Counting down the days until I see the Specialist. At this point, I am receiving no medications for anything, because no one knows what they are treating. But man, I am TIRED!! Thanks everyone!

thanks for the replies! My husband and I are trying to figure out what to do. I am beginning to get concerned because my fatigue and brain fogginess is definitely affecting my job. But I am the only one working right now and my husband cannot make more than maybe 25% of what I make as a nurse. On top of that, my job does not offer any short or long term disability! Right now though, I feel like I may be in danger of getting super sick. So, we are trying to come up with a plan. Just feeling like my mental state has taken a huge dive with all of this. I am so tired. Everything that I usually maintain is falling apart.

Ugh. I am at a serious low spot in this journey. Thought I was there already, but so much worse. Things have just gotten so messy with all of this medical testing and appointments and kids and marriage and work and LIFE! Going down to the U of MN to see a neuroendocrinologist in two weeks. Feeling worn out and jaded, hoping for answers, but tired of just getting more questions. My adrenal function is in question, my parathyroid function is in question, and I am TIRED. That is really the crux of it all. I am totally losing the ability to function. It feels scary. So much about all of this is scary, for so many of us. We are all at different places in the grieving process and right now I am low. If I had some Energy, that would help!

We can definitely get in to Mayo, but insurance is tricky. Right now trying to decide on The U of Minn health system in network or Mayo out of network. Anyone else on here have hyperparathyroid?

Feeling frustrated. Spent money we didn't have to put the kids in daycare, drove 3 hours one way to see what we thought was a specialist for neuroendocrine oncology. Drove around crazy Minneapolis. Got to appointment and met a really nice doctor who politely told us my symptoms most definitely are consistent with Serotonin release, possible endocrine syndrome, and said he cannot help and we need a NeuroEndocrinologist. Nice....thanks for telling me what I already knew....did say if I get no concrete plans from Endo, he can trial the Octreotide. Anyone know who to see in Minnesota for Endocrinology?

Dr called tonight and said they found something on my parathyroid and my parathyroid hormone was high.. Interesting. There is definitely some relief that they found something.....we go Monday to Abbott in Minneapolis to see the specialist...apparently the carcinomas tumors can secrete parathyroid hormone as well.

Today I was thinking about one of the things that I struggle with the most with this diagnosis. I am super thankful and blessed to have good days, but I constantly find myself trying to talk myself out of what I really need to accept. Yesterday I was able to go for a bike ride with my family (win). I was dizzy and had a headache, but I went! Today, despite many medical tests and being up all night with a sick child, after a nap, we went for a walk together around our land (win). I am now on the couch with a terrible headache, but I went! I find that when I have good days, I try to pretend that none of the reality of this diagnosis is real. Then I get dizzy, or a headahce, or tachycardia, or whatever, and I remember, nope, this is real. Sometimes I feel like it would be better to have some illness that was more concrete. POTS is so ambiguous, so vague, and so debilitating, but sometimes.not at all! it is tricky.

Thank you @bombsh3ll . I felt super overwhelmed this week. We went from testing a couple of things over the course of a few weeks to ordering all these labs on Wednesday, three scans tomorrow, and an Oncologist on Monday. Thing suddenly became very real. I am amazed at how many people I have chatted with online that have Carcinoid and POTS. Interesting connection. The body is fascinating. thank you for the support!

@JimL I often have this thought. How would I even know the difference? I feel like this disorder is making me paranoid of every little thing my body does. Or doesn't do.

Well, goodness. Went to the Internal Med Doctor yesterday with a picture of my flushing episodes, my complaints of headaches, dizziness, and cognitive issues in light of drastically decreased tachycardia. He is still convinced that a Carcinoid is in there somewhere. Ordered about 15 blood tests (just got 17 vials drawn), an U/S of thyroid, MRI of liver/pancreas, and a consultation in Minneapolis with a NeuroEndocrine Tumor Specialist. Eek. Where is the Ativan?

I was reading more today about Orthostatic Cerebral Hypotension, which is a subset of POTS that is demonstrated by a lower than normal end tidal CO2 and lower brain perfusion but potentially normal heart rate and BP. Unfortunately, did not find any literature on how to treat it. I am currently in the same boat- stabilizing heart rate, normal BP but almost.constant dizziness some days. It is when I am up moving around mostlh, and is NOT vertigo. It feels as though I will just fall over, like my head is 'buzzing'. Not fun.

Any news? @potsiebarbie

@Pistol thanks for the info! That is very helpful. Wish there was something I could do, I feel stupid...Hard to be Critical Care Nurse and not be able to think or talk.....Nothing so far seems to be helping- meds, salt, water, etc.....It is discouraging. Regardless of where things go with the Endocrine/Carcinoid workup, it is obvious that the POTS diagnosis sticks....and stinks....!!

2nd question. If symptoms are caused by cerebral hypoperfusion but NOT pooling, are there any medications that can help that?

So are there any known chronic/long term health effects of Cerebral Hypoperfusion? Obviously it causes distress, but any studies on long term outcomes?

I have such a hard time with sleep. When I DO sleep, I sleep fairly well, but I can get 5 hours or 10 hours, and I still feel terrible when I wake up in the morning. Mornings are TOUGH. I feel sleepy often throughout the day and in the afternoon often drag again. I do have trouble getting to sleep, or rather, I am tired all day until it is time to go to bed, and then I am wired. I never feel rested in the morning either.

Hello gang. So I had noticed since all this began that I occasionally have a 'word salad' problem and expressive aphasia (say fridge when I mean stove, etc) and now have begun stuttering. This with the constant dizziness. Have not noticed any sort of pattern. Anyone else?

@Pistol thanks for the message. Hard to not be okay with 3 little ones! The radiologist (who also works at my hospital) called me at home to tell me the scan was negative. Woohooo! Now to explain the weird test results. Off to endocrine and probable mast cell disease. Oh, the places we will go. Relieved about the negative scan, but hoping for some explanation of the labs.... Thanks everyone!!

I have waited to reply because there were so many amazing responses and I appreciate each and every one! I finally realized I needed to reply though, and even though I do not have the energy to respond to each one, it is okay. I am sitting here in the eve of my scan, pondering all of this and also, the week of Easter, which is significant for me as well. thanks so much to each and every one of you for your kind words and hearts! @Pistol I am sorry to hear about your added results on top of everything you have already dealt with. I think that after talking with my husband, this is all so wrapped up in the death of my mother. She died the morning that I was admitted to the hospital after passing out at work. I was in the hospital without my family around scared from being sick and then I have been on this emotional roller coaster with my health while trying to adjust to a new normal without my mom. It is just becoming increasingly difficult for me to go through life and pretend that everything is okay. That is the toughest part. But bounce is what I have always done and I will have to get up and bounce with this too, it is just taking me much longer this time. Thank you again for all your words, I will read and re-read them many times in the days to come! Will post soon about the scan.

Hey gang. I'm some way, I feel connected to all of you, as we are all struggling with some range of debilitating/life changing issues. I have found myself completely paralyzed by anxiety after my tests came back showing possible carcinoid. I can't DO anything, but just feel gripped by it. I go for PET scan on Thursday and feel as anxious about a positive as a negative. Just anxious...... How do you deal? Still flushing, still tachycardia, still palpitations, still exhausted beyond belief. And now anxious......

It is totally different than chropractic! No adjusting like that, just subtle movements. But I totally understand with the back history! Just wanted to share my success. At this point I will take what I can get!

She does Osteopathic Manipulation. Hard to explain, getting my system to work together again, she said my Sympathetic Nervous System was totally on overdrive. I found one study on a correlation between POTS and Osteopathic Manipulation being successful to minimize symptoms. I do not usually push things like that but it definitely helped me! Here is what I got off the Internet: Osteopathic physicians, also known as DOs, work in partnership with their patients. They consider the impact that lifestyle and community have on the health of each individual, and they work to break down barriers to good health. DOs are licensed to practice the full scope of medicine in all 50 states. They practice in all types of environments, including the military, and in all types of specialties, from family medicine to obstetrics, surgery, and aerospace medicine. Osteopathic Philosophy DOs are trained to look at the whole person from their first days of medical school, which means they see each person as more than just a collection of organ systems and body parts that may become injured or diseased. This holistic approach to patient care means that osteopathic medical students learn how to integrate the patient into the health care process as a partner. They are trained to communicate with people from diverse backgrounds, and they get the opportunity to practice these skills in their classrooms and learning laboratories, frequently with standardized and simulated patients. In addition to studying all of the typical subjects you would expect student physicians to master, osteopathic medical students take approximately 200 additional hours of training in the art of osteopathic manipulative medicine. This system of hands-on techniques helps alleviate pain, restores motion, supports the body’s natural functions and influences the body’s structure to help it function more efficiently.

Hello all! I have finally made it back to the Osteopath and wanted to give an update. After the first visit, my daily headaches stopped. The dizziness was MUCH less. The tinnitus in my ear stopped. My sinuses improved. MY palpitations lessened and the tachycardia went from all day to only in the morning and late at night! It all started to come back and I just went again and the symptoms seem like they get worse for a few days and then better again!!!!

Ugh... so I go for the OctreoScan next week. In the meantime, I had to redo all the tests. Not sure if any of you have been through the Carcinoid rule-out, but it stinks. What a rollercoaster. So the repeat tests the Chromogranin was higher and the 5-HIAA was lower. What??? So now I am just thoroughly confused. Oh well. Wait for the scan I suppose. Getting kind of tired of all of this.