brethor9

Hi all! Just wondering what symptoms exactly is Mestinon supposed to control??? All my Dr said was for autonomic issues......what exactly does that mean? For all the mestinon users can you give me a breakdown of what symptoms this drug has helped you with? Thanks Bren

Hi All! So over the last couple of days my body has decided to throw a new baffling symptom in my lap. I woke up suddenly one morning with this horrible burning, stinging sensation under the skin in the back of my thigh. I mean it is so painful I cringe having anything touch it. I went to ER and they thought maybe shingles? went to GP today and she said not because it is not red or swollen...she is actually stumped. I have seen many posts about neuropathy and wonder if this could be that? does it usually start suddenly? My GP just wants to wait and see what happens with it so I am kinda at a loss of what to do....all I know is it is really uncomfortable!!! Anyone experience anything like this?? Bren

Hi Tinks! Sorry I haven't talked to you in awhile.....going through a little bit of **** over the last month symptom wise.....in answer to your question...a resounding YES!!! I wake up feeling like that every morning and on some days its an all day thing....in fact it is definately my worst complaint.....feels like you are having a stroke or like you said that you are drunk. I think part of it is we dehydrate overnight so make sure you drink some fluids before even settting foot out of bed, also I think it could be the abrupt change from sleep state to awake state and our system has a hard time switching over and starts pumping adrenaline (which makes things worse). Do you have any coffee in the morning> I find just a tiny demi cup is useful to help with the drunk feeling and the florinef does help with it also but it has its own nasty effects to deal with which I am finding out Hang in there tinks...sending huge hugs your way!!!! Bren

arrgh! again this article makes it sound like POTS only affects teenagers and that it eventually goes away with a little treatment and medication....it sounds so fluffy! I would love to read an article that gets into the down and dirty of how miserable POTS can really be and that it affects people of ALL ages!! that it doesnt go away in the blink of an eye and treatment differs for everyone....there is no cure only symptom management, relapses and remissions.....sorry if I sound annoyed..I have been having a really hard couple of weeks and articles like this I think, can be damaging to getting other medical professionals to understand the impact this disorder has on us Bren

Hi Guys! I have been having a couple of hellish weeks with symptoms!! Just in the last couple of days I have started having severe episodes of adrenaline surges that go on for hours, during these episodes I have extremely high heart rate, lightheadedness, loss of gravity feeling, chest pain,back pain, neck pain and arm pain all on the left hand side. It is worrisome with the chest pain etc but I have been to ER in the past and they say heart is fine. Does anyone else experience these symptoms when having adrenaline surges. If I was actually having a heart attack I am not even sure if I would recognize the signs Thanks Bren

Not a bad article explaining the symptoms.....but would have liked if it didnt lean so heavily on it only affecting young people and that it can so easily be managed if you follow the below guidelines there is sooo much more to it than that!!! (and the comment about getting out there and not letting it run your life....these dr's should try it out and see how far they can push through a day lol! good luck to them!) Bren

Hi Allene My cycle is actually very similar to yours!! I am still trying to find out if there is another underlying cause because there is a distinct pattern......my specialist is thinking maybe a hormonal connection since I had a partial hyst in 2008 and thats when my symptoms really came to a head. Bren

Hi Alicia! Sorry to hear about your upcoming root canal! I had 4 wisdoms pulled last year and that was horrid!! Personally I would be lost without my ativan 0.75mg daily and 500 mg of magnesium......magnesium has great calming effects....was suggested by my neurologist for migraines.....helps my nerves more than the headaches lol! Bren

Hi C yep I do get the headaches but compared to all the other awful symptoms its lower on my list but again I am finding there is a almost cyclical pattern going on.....do you find a relation hormonally???

Hi Guys!! I haven't posted in awhile, been going through a really bad couple of weeks. I need some feedback and input....I have been experiencing some new symptoms lately and am wondering if they could be tied to the florinef I have been taking since the end of June. I haqve been taking about a 1/4 tablet daily and have been experiencing the following; agitation and bad temper (hair trigger not usual for me) severe mood swings (my poor husband is afraid of me lol!! like severe PMS swings) trouble sleeping enlarged and painful breasts (up 2 sizes...very swollen glands) increase in ovarian cysts pelvic/ back pain pain in the flanks and upper back especially left hand side increase in allergies vision blurriness The reason I believe it may be the Florinef is because recently after I take my dose about 1 hr later my back around my kidney area starts to internally itch and burn and my back starts to ache like crazy. Has anyone ever experienced any symptoms like this and thought it was caused by the florinef? I was reading that it does somehow affect your estrogen and wonder if it is imbalancing my hormones somehow?? Thanks!! Bren

Hi Libby! So sorry to hear about your scary episode....if it makes you feel any better I have episodes as you described frequently....I just keep telling myself "it will pass" as it happens....I hate them too especially when they happen at night but at least now I know they are just part of the POTS take care Bren

Hi Tinks I am really concerned about these horrid symptoms you are having!! Have you been back to your doc to see if he can get you some type of relief? Did you discuss the possibility of a CSF leak? more and more it sounds like it could be a real possibility....if he won't help you at this point I agree with Naomi and I think you need to go to the emerg or urgent care at your hospital. You cant continue on suffering its just not right and you dont deserve it and you have your wee guy to take care of on top of all of this which must be so hard!! Please keep me posted as to what is happening....if you are feeling any better or if you made it to hospital maybe??? Sending you the hugest hugs my friend!!! Hang in there! Bren

HI 37yr old white female Mother's side english/irish Father's side norwegian/welsh/black irish (what my grandma used to call spanish-irish lol) Bren

Hi Maia Yes that is very similar to my symptoms....my heartrate is always way worse when I am sick and the swings are much more drastic Bren

Hi Naomi Oddly enough, the 1st test my specialist did to check for a CSF leak was a lumbar puncture.....usually because if you have a leak when they do the spinal tap your spinal pressure will be abnormal and that can indicate a leak....the kicker to that is a lumbar puncture can also cause a leak (lol!) which is what happened to me! The more traditional way of detecting a CSF leak is usually an MRI of the cervical/thoracic and lumbar spine and head (although there are occasions when the leak is so small it does not show) My spine specialist went ahead and did a blood patch solely based on my symptoms (crushing head pain and pressure,nerve pain/pain in my back....I could barely hold my head up and when I stood... god help me!! it was horrible pressure! and the fact that as soon as I laid down it got better and caffeine would alleviate the pain for a while). The immediate relief I experienced right after the blood patch made him come to the conclusion that it was a CSF leak. Oddly enough before I was diagnosed with POTS my spine specialist thought I could be suffering from idiopathic spinal leaks (they can happen)as the symptoms are so similar....I never had any visible leakage (like you have with the wetness in your ears) but I have definately talked to other people who experienced this. Its definately worth looking into Naomi! CSF can cause similar symptoms so I wouldnt hesitate to rule it out and your symptoms sound very closely to what I experienced. Keep me posted ok? Take care Bren

forgot one more thing? you mentioned they did an MRI of your thoracic spine...have you had an MRI of your whole spine?? sometimes even a bulging disk, pinched nerve or sciatica in your lumbar spine can cause issues with circulation, compression,etc. Lower lumbar issues have also been known to cause numbness and tingling in the arms. Bren

Hey Tinks!! I am going to PM you when I have more time!! Just to let you know I have had a CSF leak after a lumbar puncture and the symptoms are similar....duh I should have mentioned that in my last post! anyways if you do think it could be a leak try some caffeine...usually with a CSF leak drinking lots of caffeine helps it and you must lay flat!!! even up to several days...something to do with increasing blood flow and it aids in speeding up the bodies natural patching abilities. If this doesn't work and a leak is still suspected they can perform a blood patch (take blood from your arm and inject it into your spine near where they suspect the leak is) the injected blood is then to form a seal over the leak...it works almost instantly!! Also during this time if you think you have a CSF do not take ibuprofen as it prevents clotting.....I made this mistake after my first blood patch and ended up having a second one Hang in there my sweet!! If it is a CSF I know how awful it feels but atleast it can be fixed relatively easy. Are you going to call your GP and mention to him this possibility? P.S an MRA is a Magnetic Resonance Angiogram.....it is similar to an MRI but looks at the blood vessels and arteries in your neck and brain to check for swelling, compression, clots, etc... Take Care and I will PM you later (trying to get the child out the door without the morning meltdown...sigh) when I have more time......get some rest and stay off your feet if you can! Hugs Bren

Tinks Sorry to hear you are suffering so bad right now!! I know you have alot on your plate..try to hang in there and not worry yourself too bad....have you seen your Dr. about these symptoms?? If not I think you really need to especially if they have just started out of the blue; just to rule out there isn't something going on and to ease your mind. For me when I am at my worst re POTS its my head that suffers the most. The symptoms get so bad (ie intense head pressure, severe pain at the base of my skull, vision issues, numbness, pulsating/wooshing sensation etc...I literally feel like I am having a stroke....in fact I ended up having a lumbar puncture, MRI, CT etc to rule out MS, brain tumor etc but everything came back negative. I also suffer daily headaches still especially at the base of my skull.....I basically wake up with it and go to sleep with it. When I mentioned it to my specialist he said it is likely due to being low in blood volume and just POTS in general. Just wondering though; maybe a few things to look into.... Have you ever had any issues with your blood sugars? Have you had any issues with your blood pressure? (swings from high to low can cause headaches according to my doc) Have you had your ears, sinuses checked to rule out an infection of any sort? Have you ever suffered from migraines in the past?? (The amazing thing I have learned about migraines is they can cause some pretty frightening symptoms...stuff you would never think!! ) I wish I could take this away from you tinks!! I feel so bad for you its probably the last thing you need to be dealing with right now Big hugs!! Try to take care of yourself...and give your doc a call if you haven't already...PM me if you like Bren

Bless you and your family Ginger in this trying time.....so sorry for your loss....hugs Bren

weirdly enough I feel horrible on opiates (they wire me for sound lol!)but have the same good effects from ativan in very small doses. My thinking is it desensitizes (is that a word lol?) my nervous system or evens it out a bit. Maybe for some POTSIES opiates do the same?? Bren

Hi All! Just wondered if there are any of you out there that have been tried on Mestinon and had good results with it?? Most of the posts I have come across havent been too promising results wise....so I'm looking to hear about the good stories Thanks!! Bren

pretty much normal everyday symptoms for me....if thats any help.... Bren

I also have very bad issues with slow motility and chronic C so my specialist prescribed Mestinon...apparently it helps muscle weakness throughout the body? which I find strange since one of the major side effects is GI problems....mmmmm....sometimes I wonder why we are prescribed drugs that the side effetcs are the exact same as the symptoms we suffer from??? bren

Hi Fried! Just wanted to let you know I feel for you because I am suffering with these episodes off and on too!!! They are not fun especially when they can last all night!! I have had many scans to rule out all the scary things so I am pretty confident its not live threatening....but it sure feels that way at the time. I find sometimes what helps me most during these episodes is laying on my stomach...it sounds weird but for some reason it slows my heart rate down....maybe the compression? Like you I also sleep upright but have found since taking 200 grams of magnesium at night and 0.25mg of ativan it is cutting down on these adrenaline episodes. I was diagnosed with very high levels of norepinephrine so I am sure as is my specialist that these episodes are related to that. When I was at my most severe I was actually experiencing autonomic storms....they are beyond terrifying!! My specialist is trying find a proper beta blocker because they help block the adrenaline...I am starting a new one today...will let you know how it goes..Have you been tested for catecholamine levels? (norepinephrine/epinephrine) that may give you some answers Hang in there and know you are not alone!! Bren

Hi Igail I am also experiencing this symptom and spoke to my auto specialist about it. He has prescribed Mestinon to see if it will help with that and my chronic fatigue issues. I haven't started it yet as I am getting over a really bad cold and dont need to deal with side effects on top of it all. I will hopefully be starting Mestinon in the next week or so. I will let you know if it helps! Bren