Richland acres

Hi, I have not been on for a loooong time.I just came back... saw your post and had to reply! yes i went down for 4 hrs, I could hear off and on, but not respond, totally out. I was rushed by ambulance they hooked me up to heart monitor etc and last thing was to put a tube down me to help me breath but I gaged so they waited on it. I was out for 4 hrs, could not move, eyes rolled in the back of my head, scared my family big time. when i came around they were running tests all negative, no explinations of why this happened. I could not walk was to weak stayed over night got fluids in me and felt better the next day, still exhausted but went home. I have severe tremors and will loose feeling like this and worry about going out completely again a lot. I get this way when I am very exhausted. Its very scarry, but most of the doc tried to say i mentally did this to myself. (I should go into acting!!) One said it was a pots flare, so not sure why this happened, but I am very prone to this happening, when I start tremors I know its time to sit down and take it easy. Hope this helps a bit. Would love to hear what your doctors have to say!! Best wishes, Brenda

Thanks for your replies. Thanks be still for the sites on Chiari, I will look it up. I have had others mention Chiari before but no doctors have said any thing about it. Is this diagnosed through a Nurologist or what type of doctor? I am at Mayo Clinic so I have to know the doctor who specializes in it or I wont get any where. Thanks so much! Sad to see others have this type of symptoms as well. Oh I also have had spinal pain for 6 years, hurts on my tail bone when I sit down, no answers on that either. weird! Brenda

Does any one have this...when I lay on my back my head and neck hurt, even just the slightest touch can set it off. I get migranes if I lay on my back. My head seems like its to heavy or some thing and causes pain. If I touch the back of my head and neck it hurts. I also now having it affect me on the side of my neck. I cant seem to lay down with out it affecting it. I have to sit in my recliner and sleep or I have such a bad migrane. Its really odd. My neck is weak at times also. I am not sure what this is all about. I am wondering if its a pots thing, or possibly MS. They are looking into MS at this time. I just started with these migranes like this so i will mention them to my doctor. Any one else sensative this way? Thanks, Brenda

I started exercising in my bed, I was to weak and sick to get out and do it. Just did a couple leg lifts each leg, then would lift up my head and pull myself up and if I was going to sit up, those were my sit ups, then I would put my arms out straight and then bring them together in front of me, those were like arm lifts, just slowly did what I could think of while lying in bed. As I got stronger I would do this in the chair. I did arm circles while sitting up. Arms out straight from my side, and then I rolled them forward making circles. This helps build up strength, but also made me feel more happy. Eventually I graduated to walking but still do most exercises sitting down. I have gained a big about of weight, 60 lbs!!! It is depressing expecially when I eat very little. I am not sure why I am gaining, I am even more active but no weight leaves. I have just decided if this is how I am suppose to be fine, but i still exercise as it does improve my spirits. Brenda

Lindajoy, I am so sorry you are not feeling well. My daughter suffers from anxiety and possible pots. I know its so hard to try to calm down and go through. I will keep you in my prayers. I do hope that some relief comes to you. Know we are all thinking of you and wishing you the best! Brenda

Well I know I would not qualify for any of thses positions, but I do want to let you know I am available for maybe some work in the Brochure areas. I could always mail some out help find people to support dinet by using the brochures and sending out if and asking for help of donations. Is this any thing that is available? Any ideas? It just sounds like an easy thing for my pots brain fog body to handle. Let me know. I could send out brochures and such to many medical places. I know around here we have a rack that holds a lot of brochures and we could easily have the dinet brochures in there also. Just an idea, Brenda

Ok, I do not sing well can not carry a tune, but heck love shower and car sining, but not now. For one I get weak in the shower, and being light headed from sining in the car isn't great either. So the world is much better with out me trying to carry a tune any ways, ha. For you, dont dispear. You will have good days and bad, once the pots is controled, you should be able to sing, but make sure you are not driving, and it would be a good idea to have some one with you. If you feel light headed of course stop . I have a hard time with breathing, but this is the same feeling when I exercise. So i exercise on good days do nothing on bad days. I think its important to not give up what you love. You may need to make adjustments but still be able to do what you love. Brenda

Kate, Welcome!!! I am glad you found us, this support system is awesome here not to mention the incredible information! I am glad you came across the site. I totally can understand how you feel with having plans for your life and now wondering if it can ever happen the way you planned. I am not as young as you, and I am not telling how "Young" I am, ha, but will say my dreams changed also, so I can relate. I worked hard pushing for a goal to be come real in my life. I wanted to have my own training facility for dogs and specialize in training service dogs. This was so out of reach when I was so sick and found out what was going on. I had flares at this time. I beg God to just let me acheive training just one dog for some one so i could make a difference in some ones life, even if it was only one life I just wanted it to happen. Well I am happy to say I had it happen 7 times!( I trained 3 out of those 7, other s helped train the other 4) It was not easy and I had a lot of help and support from friends and family, but it happened, I opened up my training facility had 7 dogs trained and adopted and just recently closed it. I got what I wanted, it may not have turned out like I originally planed, but I still acheived part of my dream and I am so happy I did. So just to let you know even though you are ill, dont give up going for your dreams, you may need others help to get you there, but still aim for them! I always say it if it was not meant to be it wont happen, things happen for a reason and some day we figure it out and why, it always works out some how. I know you will be successful and get what you want, it can happen, maybe not on your own now, but it can happen, those who love you will help you get there! Best of luck. Brenda Kate

This is interesting. I did have a weird some thing one time. I passed out and remember swearing for some reason and when I came to asked any one if I was talking and they said no. I was sure I was in a crowd of people and swore cause I once again passed out. I saw people looking at me when i swore and the people who helped me said no I was out cold, they could not revive me, weird! So I think its possible, although I have not done it since. Although I felt this same way when I was under for surgery. I felt I drempt through that once too. Brenda

Absolutly I think it is very important to have some thing that you have available for medical team to see . some thing that is helpful. You could wear a braclet that says any thing you want. Look in purse for medical info in case of emergency, numbers for your medical chart, any thing is better then nothing!! I had my stroke at a store, no one helped me, they thought I was drunk! I will never go with out info on me again! I have a service dog he wears a vest and carries info about my illness in the vest and emergency contact numbers. I am allergic to bee stings but cant take epi pen its adrenaline, so I think its important for them to know every thing, it could save your life wether they know what Pots is or not, they can always radio in to a hospital and they can give info quick, better then them guessing and trying to figure out what is wrong. So i vote a big huge yes, to all of us wearing some thing or having some sort of way to show info about you! Brenda

I to have a lot of pain, have had fibromyalgia diagnosis for 20 years, but the more recent pain is not like the fibro at all, its different. I am having muscle spams and hot burning pain in the joints and then electrical sensations now and then, they are looking into ms for me. What type of pain are you having? Burning, cramping etc? Hope it soon subsides, pain is not any fun for us! Brenda

Brenda, I am also from MN. Do you also have high blood pressure? What do they think caused the TIA? I asked my MD if my sudden weakness could be a stroke, but the MRI has been negative. I am going in for a single fiber EMG in April, but nothing else points to gyastina gravis or MS. Are you close to Minneapolis? If so what MD do you see? Thanks for letting me know that I am not alone in my strange symptoms. I was told today by my new MD that he is seeing more patients like us. They do not really understand why. Rhonda Hi Rhonda, I am actually 45 miles south of Rochester, the cities in North of Rochester, so i am not to close to the cities. They are not sure what caused the TIA, still wondering what is up. I do know that my body gets exhausted easy, muscles are very weak and if I push myself I can go into tremors, the time I had a TIA I had pushed my self. So I now take many breaks and if I cant do things with out it being to hard for me I dont do it. I use to be this strong fit woman and now I am so weak, its ridiculous but I guess there is not much I can do. I exercise daily but do not get any stronger. I feel like I am walking on stilts, like from my knees down are wooden, its a weird feeling. I actually am seeing Dr. Fealy at Mayo. He is awesome!! he is sooo knowledgable. As for the muscle weakness I am waiting to see a specialist. I have had so many emg nothing shows up positive, so they are stumped. My bp goes hig if I do some thing strenous, like carring a pail of water to my dogs, I am so weak and work hard to do it, my bp will go high 168-180 and then it drops suddenly and I collaps. My heart rate will climb high to about 145 and then when bp drop it does to and is so weak its hard to find a pulse. This is all the time. So i am assuming that when I pushed it that day I set my body off into a stroke. Thank God nothing was permament damage. It took about 6 mos. though to get my "normal" functioning back. I tell ya we sure are tough & complex to figure out. Hope your emg goes well. Brenda

Hi everyone, I just want to let everyone who is not feeling well or is in the hospital my thoughts and prayers are with you all! I do hope you all feel much better soon! I have not been able to post much, my daughter has been very ill and was in the hospital for 2 weeks and I am watching her daughterm my only grandchild and I forget how busy a 3 year old can be! Its been fun though, I sure am enjoying her. I am still also busy with The Snowflake Foundation training servcie dogs although this has taken a back seat for now. I am funding this all on my own and its been very difficult so i have had to shut a portion of it down. i am sad, but at this time its a good thing. I have many more things to work on. i am still training when I can but I no longer have any other trainers working with me at this time. I have been having a great deal of pain in my knees and elbows, in the joint area. If anyone touches them it hurts so bad, also hurts continuosly any ways. I am going to get in and get this checked out. I have put it off for way to long and my right elbow is the worst, yup i am right handed too, ha. It hurts to type so I apologize for not being on as often as I would like to. I still think of all of you and keep you all in my prayers though. Just thought i would post a quick up date. Hugs to all, Brenda

Lisa, I am sorry to hear about your blurred vision. i do hope you get answers soon!! I ahd it for awhile and then it mysteriously went away, I do hope this happens for you too! My thoughts and prayers are with you! Hugs, Brenda