skiberthoud

I love my Mestinon as well. helps with so many of my symptoms - doesn't make them go away but makes them livable! My neuro didn't start me off slow. He started me at 60mg 3xday. Thankfully I didn't have any stomach issues. I actually don't seem to have any neg. side effects at all! It helps with my fatigue, nausea, vomiting, dizziness, tachy...pretty much most things, but it didn't help with the headaches at all. I still get very symptomatic with hormone changes, but other than that everything is much better. When I've had to go off of it for various tests I've been reminded of what life is like off of it and it contrast is unbelievable.

I take Mestinon as well. When I first started on this med I was on 60mg 3xday. I also had a hard time remembering all three doses. I could definately tell when I missed a dose, or even when I was due for one. I didn't have the pain like you mention, but highly symptomatic otherwise. I'm not entirely sure why this happens (have theory but unsure). I switched to the timespan 180 once a day and it seems to be ok for me - now I only have to remember it once! I also have to use a pill box or I never remember... I'm really happy to hear that you're having a good summer so far - I hope it keeps up for you!

I'm so sorry for what you and your family are dealing with! I hope so much you have a good appt tomorrow! I'm sorry I don't have anything to say to help, but know I'll keep you guys in my thoughts and prayers. May you get some answers and some help soon!! Try to get some rest tonight...

i wasn't sure what exactly the original post was about so I googled her and found her on youtube as well as elsewhere...

Interesting - hadn't come across this before. She's fun to listen to Curious is craniosacral therapy has any help to offer...

So sorry you are so discouraged. It's nice to know you have someone who believes something is wrong with you. Sometimes it seems like such a long, frustrating journey to find answers, or at least things that help. Going GF is a very proactive step. Embrace it and know you are definitively doing something good for yourself. Don't cheat and lets hope it helps. If not, it's one more thing to scratch off the list and keep searching and letting your voice be heard. As far as your nighttime issues, are they just before you go to bed? all night? I say be proactive and call your docs office today and get them to schedule your sleep study. That's another thing you can do that may provide you with some clues, answers and/or relief. I hope today you are able to focus on some positive things - do for yourself what you know you can do to help take care of yourself. Be kind to yourself and I hope for you a peaceful day.

I'm sure some of us on here have been diagnosed with Leaky Gut Syndrome. I'm wondering, how many, who and if with treatment you've noticed any positive effects on your pots symptoms... Thanks!

Sorry for not explaining myself. What I mean by "lightening the load" is that our bodies have a lot to deal with just dealing with the dysautonomia (and any other comobidities we may have) so whatever you can do to lighten your body's load is useful. Trying to control the things you can control -allergies/sensativities, muscle tension, stress, vitamin deficiences/nutrition, etc. These are all things that we can effect and change to some extent through various means. We are like a rain barrel and when it gets too full it overflows, and our bodies let us know it. For me, personally, the road is just beginning (even though it's been 1.5 yrs). I have had years of bad habits of ignoring the signs my body gives me, but now I am listening. I also opt for a natural approach and have had some positive results. I hope the same for you. Hopefully I didn't confuse you more

There has been quite a few posts on the topic of alternative/natural medicine on the forum. If you use the "search" box in the upper right then you should be able to find some useful info. Personally I believe that "lightening the load" is helpful when dealing with dys and there are a variety of natural approaches to doing this and each person has to find what works best for them. I hope you are able to find some helpful links.

Congrats on a diagnosis! That's a great first step. The Dinet website and forum will prove very valuable to you, I'm sure. I think you will find that we all have "weird" things that tend to make us worry, but they are usually related to our dysautonomia. I also have had the wierd pains/feelings in my head. I've suffered from headaches for many years, but since POTS I'll get "different" pains/feelings. It took me about a year not to constantly feel that they must be missing something. But now all the different oddities that seem to come, seem to go as well, which is rather reassuring for me. Hopefully you will be able to find a good physician you are comfortable with that will help you manage things. Thanks for introducing yourself - oh, and I think there are some others on this forum from your neck of the woods, so maybe they will be a good resource for you.

Sorry, never been. Let us know how it goes! I hope it's a good experience for you.

Hi Autumn. I hope your appointment goes well and is not frustrating. I have nothing to add about Dr. Freeman. I have not met him. I had my autonomic testing done elsewhere, but my new neurologist refers his patients to Dr. Freeman, so I may be meeting him in the future. I remember reading a positive comment about him (among the negatives) so I hope you can add to that! Let us know how it goes!

I agree that this is a resource we cannot afford to lose. Unforutnately I don't know that there are many here that are up for the tasks. Perhaps the points/ideas that Reen makes are valid. This is very far out of my comfort zone - I know nothing about any of what would be needed keep this organization up and running. I would like to offer my support, but I don't even know what I could offer that would be helpful Looking forward to seeing what people come up with to keep DINET alive!

Glad you had a good appt, Issie! I hope it continues to go well with her!

Lieze, I believe that Spirutein does not contain corn. It's made by Nature's Plus. You can get it online or in a health food store. It's a high protein shake. Perhaps it's an option for you.

Rama, no visual snow here. I'm assuming you're having some? Any positives for you?

anything specific about your POTS? Rama, sorry, but I'm not sure what you're asking. My presentation of POTS or mestinons influence?

It does help my tachy trememdously.

Sorry for today. Hope tomorrow is better and that next Tuesday comes quickly.

See, everyone is different. I had daily nausea and vomiting until I started the mestinon and I stated on the 60 tid, and that is what nearly eliminated the daily nausa and vomiting. There have been some tests I've had that have required me going off med a few days before and the nausea and vomiting come right back. I guess you'll just have to try it to see how it effects you.

I hope that Mestinon brings some relief to you! If you do a search on here for Mestinon you will come across quite a few posts that may be helpful. It seems as though some benefit greatly from it and others do not. I am someone who responds well to this med. It's actually the only medication I take for my pots symptoms and it makes the difference between not functioning and functioning. I do not have blood pressure issues, so I can't comment on that, but it helps with most everything else. I was started on 60mg tid. I would regularly forget one of the three doses and it was clear that I needed all 3. I switched to the 180mg timespan, which you only take once a day and it seems to work just fine. I have had no side effects from this med. My body loves this drug, now I just want to know why! I hope it brings some relief for you.

Did your allergist talk to you about allergy shots? Possible direction for you.

Naomi - know how you feel. I feel similar. I'm happy to have a diagnosis, but not totally satisfied with the answer, or lack there of. However, I am no longer researching online like I did before. I've been heading down the naturopathic route instead, since traditional medicine is lacking. I hope you are able to find either some answers or some satisfaction somewhere.

Retroviruses, including xrmv, are typically not airborne. As long as you are careful to adhere to universal precautions you should greatly minimize your exposure to these viruses.

Julie, thanks for passing along your info. Wise and useful information! I'm wondering if any one has feelings on raw milk (have docs addressed it with you)...I know quite a few people who have seen such amazing results from it. One of my friends had serious GI issues and it was raw milk that played a huge role in his recovery (and he certainly could never tolerate reg milk). Interesting. Just wondering....