SarahA33
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Posts posted by SarahA33
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Forgot to add something, sorry! h2o may not be enough if it's related to dehydration... Try some pedialyte!
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Hello,
I just thought I'd add when I first became symptomatic it was w/ migraines. However, in the beginning what seemed to work the best for me was having an infusion at my neuro's office. it consisted of: 25mg IV Benadryl, Torridol (unsure dosage but it;'s like IV motrin), low dose Compazine for the vomiting, magnesium and fluids. If your headache/migraine doesn't go away soon maybe you could call your dr. and see if they would advise anything. Do you have urgent cares or immediate cares where you are from? They are as popular as mcdonalds around here!
Like Katy mentioned, Excedrin was my first choice but I wound up w/ a nasty medication over use headache on top of the migraine. It wasn't fun.. so sometimes a step up like an infusion may be helpful.
Hope you feel better really soon!
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5-Hydroxyindoleacetic acid (5-HIAA) is found mainly in serotonin. I only wondered if yours were measured with both blood and urine as mine were extremely high in blood work but slightly above average in urinalysis. Carcinoid's increase your serotonin, but so does certain medication combo's and something called serotonin irritation syndrome, I didn't have any of them. Just naturally produce higher than normal levels in most things I guess!.
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Hey Kris,
I'm so relieved that you had a good appt today with the Endo. I hope you'll keep us posted on the results of your tests .. What 24 collection tests are you doing? it may be useful to add a 5H-iAA, serotonin and catecholamine's if you haven't had those done already.
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Ashley,
Hi there. I'm sorry I am unable to relate to your first set of symptoms. I rarely sleep at night and never cat nap during the day. I often do wonder what wakes me up though. The surges is my best guess. Often I wake up with really bad tachy and palpitations. Sometimes sweating and headaches. have you had a sleep study?
Lastly, I wanted to tell you that I have passed out because of the hyper pots (which is rare to actually "go out") and have pre syncope episodes throughout the day.
Sorry I could not be of more help. - Sarah
Today I was very sleepy so I went to take a nap ( which usually never works out as I get adrenaline rushes from the tiniest noises). Today I was able to fall asleep, and slept about an hour. When my alarm woke me up, I felt AWFUL. It was strange, but it felt like I had just not been breathing hardly at all for a long period of time. My head was really heavy feeling, my chest felt weird and heavy, and I felt basically suffocated. It took 15 minutes of laying in bed just breathing to recover enough to get up.
I've felt something similar to this before, mainly from having my head in the covers or something like that. Does that sound like an oxygen deprivation issue? I can't imagine why it happened. I wonder if like I've heard reported, I was waking up into a fainting episode or something?
. Do you think that the near fainting episodes I have with those are my NCS being triggered by the pain of the cramps? If so, I've had NCS since I was a teen but didn't know it b/c I only reacted during that situation
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Gemma...
are you currently in buffalo? or did you already see dr. blistheyn? Shes right in my backyard but Ive never gone to see her. curious to hear of your experience if you wouldn't mind sharing!!! thank you!
sarah
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Joann,
I came on this site to find others who are in the "same boat" as I am. I've said it before, I no longer feel like I'm on an island. When I go to the ER for my BP/HR I rec'v 3-4 bags of saline and up to 4mg at various times of IV Ativan. Does the trick for me.
Who is diagnosing you with pots at the moment?
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Hi Liz,
Many doctor's are cautious about putting their hyper pots patients on florinef and midodrine, but its not completely unheard of. I'm just lucky that I had doctors willing to bite the bullet. I made virtually no progress without either of those medications. I'm Diagnosed as Having Hyper Pots through certain levels in my blood/urine (catecholamine levels with serum norepinephrine) as well as a Tilt. Mornings are absolutely awful for me.. my body just goes into a panic overload. My pressures range from high 200's to low 90's and HR's usually are btw 130-170. It has to be the most challenging part about treating this. I began Florinef a year and a half ago. I take my last doses of florinef and midodrine 4 hours before I lay down at night so I don't increase my supine pressures. I take Propanalol, Clonodine, Ativan, Florinef, and Midodrine.
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Thanks Janet. I appreciate the kind words. I think we're making our way to calmer waters but things seems to change so frequently. it is frustrating.
Hope you are hangin in there as well. I'll call you at the end of the week when things die down.
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Alex,
thank you for sharing that book, I read it online. Whole chapter on Mestonin. I understand a lot more about that medication now. complicated medication, it is.
Thank you!
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And I forgot to add that the fact that your cardiologist is "backing you up against a wall" is really just wrong. And having poor trust in him from the first incident is also a reason to maybe find another cardiologist who doesn't sound like a bully?
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Hi Canadian Girl,
I've had virtually the same cardiac work-up and it's not easy. I'm really sorry you have to go through all this. I tried a CT angio twice but we seem to have had opposite problems, they couldn't get my heart rate to come down. So, next time I took two clonidine and an Ativan.
"The radiopharmaceutical injected into you for your PET scan is called FDG, which stands for “fluoro-deoxy-glucose”. This is a very low concentration solution of glucose in water. The glucose, or sugar molecules, have a radioactive isotope of fluorine attached to them which allows the scanner to “see” where the sugar is being used (metabolized) in your body" ( adronline.org ) Anyway.. I had absolutely no reaction from this, which is rare for me. The biggest pain was having to sit there for an hour after injection.. And use to the ladies room first, because if you have to pee you reset the whole thing.
If your body wont cooperate with the CT Angio then I'd go with the PET Scan, the normal angiogram isn't awful but its invasive . Maybe you can squeeze another quick echo in there just to be sure?
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Okay, I don't know about all of you, but I am sick and tired (pun intended) about having to go into the ER for 4 1 1/2 bags of fluids and IV Ativan and beta blocker. I took my midodrine,florinef and clonidine while I was there to.
Have any of you had ER experiences where they haven't wanted to dismiss you after you've been diagnosed w/ pots? I went in HR 177 and 11 hours later was 154/110 and HR of 130. The admitting dr said "I could never let you leave this hospital with a heart rate this high" and walked out. I thought, oh no .. He thankfully called my dr. and he told him "this is a chronic condition and if he kept me in til my HR fell below 130 I'd be moving in"
So I got to leave, WITHOUT a diagnosis I would have begged them to keep me in there, but with the hyper pots dx there is just no need after fluids are done.
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Andy,
Don't throw out your phone books! (Yes! They still make them,lol) They help to keep your arm straight and at heart level sitting and upright. I've been using them for years.
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"Sarah, do I tell the doctor arranging my schedule to include Dr. Joyner -- I hear it's a very busy one. Or do I just contact him when I get there? I'm going to be seeing the cardiologist who originally saw me and diagnosed me, who has set me up with an autonomic neurologist and who knows who else. "
I would highly recommend arranging the visit prior with Dr. Joyner. Much like most of the doc's there, he travels and is quite busy
I hope you can arrange your schedules to have a visit.
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Its actually an RX for breakouts that I was given when started Florinef...
it's a wipe and I had absolutely no side effects from it (which is very rare) Anyway, it's called Prascion which is an rx only. I did rec. samples to try before picking up the actual script and I love it. I broke out so badly from the Florinef (at freakin' 25) And this cleared it up without drying it out.
Best of luck,
sarah
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awesome alex, thank you.
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Well As of right now testing is completed. I'm supposed to go back annually to find the Pheo Scans since my oncologist described it as "picking up glitter", And they are basically saying that the cells just aren't showing up this soon are still causing all this havoc. I don't agree and neither do my other doctor's. My response to certain meds, high levels of norephenephrine and catecholamine’s and the Tilt Table test proved I have hyper pots.
How about Adrenal Related insuffencies. Like: Addison's and Cushing's. If they think Addison’s or cushings: def. see an endocrinologist -
http://www.absm.org/bsmspecialists.aspx There are dr's grouped by cities and states that youll hopefully find in your area if you are interested.
List of Board Certified Behavioral Sleep Medicine. I've tried everything else.. OTC's, RX's, therapy, sleep studies, meditation, yoga, baths, blah blah..
I have an appt next month with. Dr. Tajuddin. Keeping my fingers crossed. I don't think i've slept more than 2-3 hours of choppy sleep in years. I should be exhausted, but I'm not. Hoping this dr. will be able to provide some insight!
Sorry if I semi-hijacked! Just wanted to give you all this list I found. I hope everyone gets some sleep tonight....
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Hey Andy,
Typically used for Myasthenia Gravis. taken from their website "MESTINON® is an orally active cholinesterase inhibitor. MESTINON® prevents the breakdown of acetylcholine by allowing more acetylcholine to accumulate. Acetylcholine is the chemical that sends nerve impulses to the muscle. With more acetylcholine, there is more control of voluntary functions such as eye movements, limited strength, swallowing and breathing."
Since Mestinon is not FDA approved for Dysautonomia there really isn’t all that much literature showing it’s effectiveness on thermoregulatory control. It does help to lower your body temperature so that has to be the "golden ticket". My doctor has saved Mestonin as the next medication he’d like to try, and it’s not for the thermoregulatory control, its to see if it decreases my heart rate.. I have a friend with hyper pots who takes it for POTS to control the temp control/ flushing and It does lower her HR.. but the dosing has to be consistent or else you may have some unpleasant GI effects.
Sorry I couldn’t be of more help, Andy
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Kris,
I am so sorry for what you are going through. Unfortunately I know exactly what you’re going through. I spent months being worked up for [heo, carcinoid, etc.. Have you had a pet scan, octreotide test, and MIBG scan yet? Those all pick up anything neuroendocrine.
Good luck with everything and I'll keep you in my thoughts. I hope everything goes well...Be thankful that you have a dr. advocating for you because he/she will push things along for you.
My relationship is just starting to get back on track. My fiancé stuck by me throughout the entire time but after that debacle was over he (we) hit a brick wall. I know this wasn't what he signed up for, but life doesn't work like that. I rec'd my Hyper pots diagnosis about a year and a half ago and have been doing better..and so has our relationship. Chronic illness can be heck on a relationship. Please hang in there -
Andy,
I started midodrine about 3 months ago and have noticed a decrease in my heart rate. The unfortunate side effects for me have been the goosebumps. They raise up on my arms and are actually kinda painful for a few min's....also, my extremities feel as though my foot's fallen asleep.. if that makes any sense. So my dr. says that this means the midodrine is actually working. I'm a hyper pots patient so this was quite a gamble but it seems to be paying off. Good luck to you
Have you checked into Mestinon for the thermoregulatory control and HR?
Back To The Er...again
in Dysautonomia Discussion
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hey alex,
Yes I've been ruled in and out for virtually everything - including IST, which ive been told I have.
I actually have been signigicant improvement on the florinef and midodrine. Despite the ER setbacks (which have actually decreased... which is depressing because I still feel like im there a lot, lol) , over all I am much better off than I was before. This is the first time I've made real progress, I realized though that I might "rock the boat" by being on both the florinef and midodrine at the same time. I do not take either of them 4 hours before laying down so that I decrease the chance for supine HTN and also I take .2 Clonodine each dose of 10mg. Midodrine (Along with Ativan and propranolol) Its complex but it was set up that way. I appreciate very much the concern for a second opinion but I'm gonna stay put..