[AnnieB3]

Hey, Susan. I thought I'd do a new post about this. I read your comments about a fast heart rate. That would not be the same thing as high blood pressure. The two do not necessarily go together.

Mestinon tends to cause bradycardia (heart rate 60 and lower). I was wondering if your docs have checked out a thyroid issue or if your MG is so bad that your heart rate is going higher. The heart pumps faster when the body can't get enough oxygen too. There are a lot of causes of a higher heart rate.

Mayo did find that Mestinon could increase blood pressure. What I find interesting is that my BP in between doses is higher and it's lower on Mestinon.

Here's some info for you.

http://www.medicinenet.com/low_blood_pressure/page6.htm

Mayo Clinic researchers found that a medication used to treat muscle weakness in Myasthenia gravis calledpyridostigmine (Mestinon) increases upright blood pressure but not supine blood pressure. Mestinon, an anticholinesterase medication, works on the autonomic nervous system, especially when a person is standing up. Side effects include minor abdominal cramping or increased frequency of bowel movements.

http://www.mestinon.com/index.jspf

http://www.medsafe.govt.nz/Profs/dat...estinontab.htm

Be aware that Mestinon has positive effects on those with ischemia.

http://www.ncbi.nlm.nih.gov/pubmed/17397949
http://www.ncbi.nlm.nih.gov/pubmed/15367503

And though this is only ONE case example, it can also spaz out the heart
if you have too much of it.

http://www.ncbi.nlm.nih.gov/pubmed/16098399

Never assume what is causing a new symptom! A rapid or fast heart rate is a sign something is going on that isn't normal, which I'm sure you know. Kind of hard to pursue when your neuro thinks you're fine. I hope you can find a new one.


Annie

[DesertFlower]

Annie, thank you for the info and mostly for thinking of me.

You are right, I may actually have low blood pressure or maybe it is not related. I will describe some of what I am feeling.

The symptoms that I am having are these (this comes and goes but seems to happen regularly every few weeks and can last for 1 to 4 days):
-Rapid heart rate, seems to be about 100 to 120 beats per minute while at rest.
-Tense muscles, mostly my shoulders and neck which I am consciously relaxing every few minutes
-Feel stressed and nervous
-Sometimes feel out of breath, but not always.
-Sometimes shaky

My guesses as for causes:
-Too much Mestinon
-Not enough Mestinon
-Dehydration (I drink a lot but I almost always feel thirsty or dehydrated)
-Stress (definitely part of the cause)

I have noticed that I get this rapid heartbeat often if I have a stressful moment either
1) during the 30-40 minutes following taking Mestinon when I first start to feel the positive effects or
2) when I am starting to feel weak because I am due to take Mestinon again.
After my heart starts beating fast it doesn't go away for at least a few hours and sometimes days.

I have completely stopped drinking caffeine and that doesn't seem to make a difference. I am not eating or drinking anything out of the ordinary just to make sure it is not some new food.

When I go to bed, it often stops, but not always. What seems to stop it is not the laying down but the relaxing. I use a type of mental relaxation technique to fall asleep (couldn't fall asleep in the past and had to teach myself to fall asleep). I have tried something similar during the days when this happens and sometimes it helps but other times I am unable to mentally relax. I think I have a stress problem and that the Mestinon (or the MG) is making it worse somehow, or maybe my stress caused the MG in the first place and I am getting worse. My neuro won't talk about it, says it is not MG or Mestinon related.

Similar things were happening to me before I decreased my Mestinon dose from 60 mg to 30 mg. I have tried decreasing my dose from 30mg to 15 mg but then I feel weak (but not terribly so) so I haven't stayed at that dosage to see if it makes this fast heart rate go away. Maybe I should try it for longer and live with the slight weakness to see if these crazy symptoms go away.

I keep planning to see my general doctor, and then everything goes back to MG normal and I get busy doing other things.

Also, the rapid heartbeat thing seems to happen mostly when I am having good MG days and not so much when I am having bad days.

I dont know if any of this makes sense, all I know is that it makes me feel crazy...when my heart is beating so fast I feel nervous and my thoughts are going around in my head so fast I don't know if I even make sense. Right now I am feeling bad, this is as bad as it gets.

I want to add here that my stressful moments are not always big stresses, but sometimes little things that really shouldn't matter. I feel like something physical is making me feel stressed, rather than stress causing the physical symptoms.

Could I be going into some time of short term remissions(or at least really good days) that last 1 to 2 weeks and during this time I am getting too much Mestinon?

I feel like I am typing contradictory to things I typed on other days, and it might be true because I am feeling opposite of my usual day.

It has been 6 hours since I took Mestinon last and I am so tense and jittery that I don't want to go to bed. I am not tired at all. Something is wrong. I guess I had better just make that doctor appointment even if I don't feel crazy tomorrow, even if it is just to ask for another referral to a new neurologist who at least listen to me.

Thanks Annie, I hope you are feeling better.

[Stellatum]

DesertFlower--I'm new around here so I don't know your history, but the tense, jittery feeling you describe, with a fast heartbeat, is how I feel when my thyroid is overactive. I do know that many mg patients develop Graves' Disease. Is that ruled out?

The good news about Graves' is that it's a lot easier to diagnose and treat than mg!

[DesertFlower]

Thanks for the info about Graves disease, it is possible that I am developing something new and the symptoms are similar but I am lacking in many of the symptoms on the lists I read for Graves. Still, it is possible...

I did talk to my pharmacist and my regular doctor over the phone, and this is the conclusion from both of them:

The symptoms I have of rapid heartbeat, tenseness and nervousness are not listed as a side effect of Mestinon, but most likely it IS the Mestinon causing my symptoms along with an emotional part (stress or even some kind of expectation of getting these symptoms). I am told that these symptoms are what doctors call Panic Attacks. It was recommended to me to try relaxing when I take Mestinon to see if that helps, to avoid work and any type of stress for at least a half an hour after I take Mestinon.

Initially they both thought that I was drinking too much coffee, but I am not. In fact I have been mostly avoiding coffee and tea for a few months now.

The funny thing is that both the pharmacist and the general doctor said that my neurologist should know more about Mestinon that they do, and it was recommended to talk to my Neuro about it. They all say to talk to someone else! Sound familiar?

From my experiences with Mestinon, I agree with them that the Mestinon is stimulating my muscles and making me nervous after I take it. I am very sensitive to medicine. I was told by the pharmacist that although my symptoms are not listed for Mestinon, I am probably one of the rare people that experience these side effects.

The relaxing seems to be working, but it is so hard to do nothing. I am considering learning meditation or yoga or something else that is slow and non stressful. Maybe I will use this rest time to read a book. I do see that I will probably always have to rest with Mestinon.

Then again, since I have to work, when will I find time to learn any method of stress reduction?

Oh, and I almost forgot, I do get this "Panic Attack" thing every time after I do extra work...I don't seem to be able to work more than two days per week without getting this problem. This happened last time I worked extra days and then it slowly faded and I went back to regular MG...I hate MG.

Is it possible that the Mestinon is causing damage to my body?

So, my conclusion is that I really shouldn't work more than two days per week and that I should go to the doctor to get my heart checked out along with a regular physical checkup just to be sure and ask about my thyroid too.

I am so confused about this. How can I have MG weakness and also have my body get so tense.

It is mostly the morning Mestinon pill that I have to be careful about. This is the one that can cause me the most tenseness when I take it. Maybe I need to modify my pill schedule and skip the morning Mestinon.

I definitely need a new neuro, I really need a doctor to help figure this out.

QUESTION: For those of you that take Mestinon, how often do you have to modify your Mestinon dosage or schedule?

[suev]

Susan,

My neuro says for me Mestinon dosages are 'subjective within boundaries'. I'm not supposed to exceed 120 mg per day (or 60 mg in any single dose) - - but I don't have to take any if I don't feel like I need it (which has not happened yet and probably never will!!)

To give you an idea:

Sunday, I hung around the house and didn't do much of anything until mid - afternoon when I figured I'd better prep some flower beds. I had not taken any Mestinon at all until I decided to work outside. Then I popped 30 mg. 4 hours later, I was finished with the garden, cooking and eating dinner and I took another 30 mg. (the plates feel heavy when loading the dishwasher was my clue!)

Now today, I took 30 mg at 8:30 before going grocery shopping. Took 60 mg at 11:00 before heading off for a round of golf. Took 30 mg at 1:15 cause I was still on the golf course and felt good enough to keep playing...but needed a bit of a boost. And then around 6 pm, I took another 30 mg. cause I was droopy, but still wanted to function.

So, Sunday was a 60 mg total day with not much activity....and

today was a 150 mg day (which technically exceeded my daily limit).

For me, the more active I am - the more I need ... but I know the difference between 'I'm tired and I need to rest' versus 'I'm flagging a bit and need a pill' versus 'this is a really bad day and I need to take it easy AND pop 30 mg every four hours or so'.

I'm still working closely with my neuro on all this and I'm sure things will change again as we get into the warmer weather. The one thing I am supposed to look out for is muscle twitching. If that starts to happen - there's a good chance I have reached my upper tolerance limit on the Mestinon. (I have only experienced minor eye twitching - which they don't pay much attention to. It's when a big muscle twitches repeatedly that I'm supposed to be alert for.)

I am grateful my doc is giving me such leeway to try and stay active. And, I can say my shortness of breath has disappeared with the extra Mestinon for golf. But we know each of us is effected so differently...by the MG, by the meds, and by any and every- thing else!

Still I hope this info helps you....Sue

[AnnieB3]

Susan, Does MG make you feel threatened? I'm actually being serious. As someone who has PTSD from doctoring traumas, it's not farfetched.

Is Mestinon a reminder of that? You know, a trigger?

Maybe you're allergic to Bromide. It's possible. Do you have any signs of an allergy like runny nose, increased mucous in your throat? A higher heart rate can be a sign of that too.

I love how they all pass the buck back and forth. NOT.

I think you should keep a log of your symptoms and when you take Mestinon, etc. Are there any herbs or anything else like supplements you are taking?

My heart rate goes high when my MG is bad. Then the O2 saturation goes down.

Abby, Graves is a good thought. Always a possibility when you have one autoimmune disease.

Sue, I had to laugh at how you describe being weak, like being unable to lift plates. One day I was so weak I couldn't "crack" the ice cubes in my ice cube trays. Pathetic.

Susan, I wish your doctors were more concerned. At least doing a little heart monitoring and at the very least an ECG. Yeah, could be an increased heart rate from panic attacks but what if it's not?!!!

All these assumptions in medicine is probably why there are so many mistakes.

Annie

[DesertFlower]

Annie, great questions to ask myself. My answers and thoughts.

Mestinon as a trigger for stress

MG doesn't make me feel threatened, not exactly, but there is something about medicine that does. I have had so many bad reactions to medicines, that I am scared every time I take anything. Surprisingly, I am tolerating Mestinon well and was starting to relax about taking it.

I also had childhood trauma from doctors and I have difficulty going to see doctors now, I feel unreasable fear just thinking about going to a doctor or taking medicine.

I don't really understand how it could be, but it is possible that somehow I feel threatened by Mestinon. Mostly because as a child I was very badly overmedicated (understatement), so much that I almost died, due to stupid doctors.

Allergic?

I may be developing an allergy to Mestinon, I hadn't thought of that. I have had a runny nose during the last week, but so does just about everyone here due to pollen. I am going to take allergy medicine to see if it goes away, I take Claratin when needed, but I haven't needed to since last year.

I don't have any of my typical allergy symptoms right now. I am allergic to lots of things, so I am always watching for signs of allergic reactions.

I don't think I am allergic to Mestinon but I am going to watch myself carefully.


Taking anything else?

I am taking Vitamin B Complex, Vitamin C and Vitamin E daily. I sometimes drink various teas, but not during this last month and never regularly.

I am wondering if my heart rate was high due to the extra work that I did. I am suspecting that I have a delayed reaction to pushing myself too hard. I really do think that me doing too much physical activity has caused this although I don't understand the process. The part that doesn't make sense is the tenseness...shouldn't I be more weak when I push myself?


Sue,

Thanks for your description of how you take Mestinon, it is helpful.

I usually take Mestinon at this time of day, but I feel tense in my shoulders and neck now, and although my heart is beating regularly now I feel like any little thing will make it beat fast again. I am going to delay the Mestinon, since yesterday I took one when I felt like this and it made my heart beat fast...I was able to sit and do nothing and my body calmed down. I do think that I am taking too much Mestinon.

I am going to experiment with my Mestinon again, within the boundaries set by my doctor.

My neuro did say that it is dangerous to suddenly stop taking Mestinon, he warned me to absolutely not stop taking it without working it out with him. He even said to be careful about skipped doses - he said this as a general statement and not just for me. I find it surprising that your doctor said to take it as you need it.

Thank you very much.

[jana]

During a really bad stomach virus, I didn't take ANY mestinon AT ALL for almost two days. I'm normally a 6-10 pill a day gal. I "survived" without my Mesty -- didn't have much of a choice -- although a doc in another group told me that I could have tried to take it vaginally.

My neuro has given me total freedom to regulate my dose -- up to 10 per day. I start off with 1 1/2 (90mg) first thing in the morning. Usually take my second dose 3 hours later -- but, I may take it earlier or later -- depends on how my mouth is working. I'm "puckering" all day long -- that's how I check to see if it's time to take more Mesty -- works better for me than the clock.

[AnnieB3]

Susan, I'm sorry you have had such traumas in life. I completely relate, as you know. It's really hard to get over the traumas where your life is being threatened, especially by those whose job it is to help you.

I know there are psychiatrists who have a specific technique called EMDR, where they use several techniques to help someone get over traumas. I've been referred to a local expert. It might be worth a try.

http://www.emdr.com/briefdes.htm

Can you try being in an "angry" mood before taking Mestinon the next time? Like I said before, anger and panic can't coexist in the body at the same time. Whenever I "try" to be angry, though, it just makes me giggle.

I don't know if there is an allergy skin test for Bromide. Or even a RAST test for it.

I know you can figure this out. Just watch what's going on and listen to your body.

Oh, and about the Mestinon thing. How often you take it really depends on how bad your symptoms are. I take mine every three hours, round the clock, because maintaining my MG with Mestinon is my only treatment option right now. It really does help to keep MG more under control when you take it on a regular regimen (time between doses).

Annie

[DesertFlower]

I have good news, I think.

I am skipping my morning Mestinon and feeling mostly good in the mornings, better than I have since I got MG. I am pretty sure my symptoms are from too much Mestinon.

I am now taking 30 mg of Mestinon 2 times a day instead of my previous 3 times a day, but I do think I can stop taking the afternoon pill too.

I think my MG is getting less bad, but not gone. All the double vision is gone as well as most of the facial weakness. My legs and arms still feel heavy but are working great! I suddenly have lots of energy and found myself cleaning and making a list of things I want to do.

This is embarrassing, but I haven't completely put away my clothes since last Spring when I got MG...been leaving most of my clothes in the dryer until I want to wear them. Just haven't had the energy to fold them or hang them up. I have piles of clothes everywhere in my bedroom. I put all my clothes away today! And I cleaned part of my house and garden. It felt great! I did all this slowly and carefully to prevent overusing my muscles. I don't feel tired at all.

I am deciding if I should call my neuro...he seems so irritated when I call him with questions that I hesitate to call ( I have only called twice with concerns since I got MG last Spring, it is not like I call all the time). I don't feel comfortable reducing my Mestinon dosage without talking to him, but I am definitely getting overdose symptoms still, even if they are only slight.

I am still getting tense shoulders and nervousness after my 2nd Mestinon of the day. I am not sure where to go from here. I am excited that I am feeling better, even if this doesn't last, but I want to know what I should do to help this process along. I can find nothing on the internet to help me.

My plan is to continue eating good and taking the vitamins I have found that help, and continue decreasing the Mestinon until either the tenseness is gone or my weakness resumes. I would rather live with tense shoulders and a feeling of nervousness that get weak from not enough Mestinon. I do have a checkup visit scheduled with my Neuro, so I can talk to him then.

For anyone who has had their MG get better, even for a short time, what do you do? Stop taking Mestinon temporarily?

I hope everyone is feeling good. A part of me feels sad since I am feeling better and I wish everyone could be feeling better with me.

Of course, I am expecting a crash, but I will enjoy the good days as long as I have them.