Richland acres

Hey great question!! I dont know the answer but hope some one will be able to share some knowledge. Brenda

I am on Nortriptilyn, its helping me with sleep and pain, but I think its an antidepressant too. All i know is its working and I dont have the surges, well i have them, but dont feel them as much. When I miss a dose i sure know it! Its great for sleep! Bad side affect of weight gain though, so you have to be careful that way. Other wise its great. I have tried amitriptilyn but it gave me horrible side pain so they switched to this instead. I dont think its an ssri though. Brenda

wow guys this has been a real fun thread! I love talking about animals and how they help us. I like to think that maybe they have spirits of humans that have already passed and those spirits use the animals to take care of us, ha, ok well not maybe, but its a good thought! Makes you wonder how they can be so in tune to us and help us automatically with out any training. Ok no more doggy phychic, you'll all think I am nuts, ha. Emily thank you for your kind words! i am glad you enjoyed our web site. I just am grateful i am able to help out others! I have wanted this for so many years and its finally taking off. I love helping others and using the best thing in the world an animal with unconditional love. I am sorry to hear your puppy dog is so anxious over you being ill. I hope things work out for both of you and if it does not work at your house maybe he will do better some where else. Oh dont feel bad, its not your fault! He maybe was suppose to bless you life for a short time and now is going to bless some one elses. Hes special to be able to move around! maybe some day another dog will come to bless you and be more settled with things. Lizzy, If your dog is that in tune to you I bet it would do great for a service dog. Just have to make sure its friendly and not sacred out in public places. The first thing i would do is have some one teach it to sit come stay and heel, then your half way there to having a servcie dog. the rest is teaching it the special tasks you want, and socialization in public. You dont want everyone to pet it you want it to be paying attention to you and not worried about other things going on, if you want to e-mail me personally i can help you through this. I can give suggestions or advice to who ever, i may not know all the answers but i will try. This has been fun sharing! Furry hugs to all, Brenda

Yes!! Me too, great way of explaining it, the eye balls have to catch up! I love it, thats exactly how it feels, they respond so slow its like I see some thing, but it takes a couple of seconds to comprehend what I am seeing. But still do not understand the off balance part. We are so strange, ha. Gott love it though, gives us some thing to think about and laugh at. oh yes and get angry with too. brings out many emotions for that matter. keeps us interesting. Brenda R.

Demeral is very toxic to me. I use to be able to take it, but not now. Its does raise the bp and is known to make the heart rate go up. I am suprised your doctor gave it to you. Although we are much more sensative to any medications. We have a more enhanced reactions to a lot of medications, where a normal person would only have a slight increase in side affects. Maybe if he gives you 1/2 of dose then what you normally have this might help. I use to do fine with it, but then had a severe allergy reaction. Just be careful and know in the back of your mind we are much more sensative. When trying any new medications I start out with 1/2 of a normal dose. Brenda R.

ok forgive me and my brain fog, I found my post, ha. The chi sounds like she knows exactly what you need! She sounds perfect, definately one that would make a great servcie dog!! Its amazing how they are so in tune with us. I have heard they can sense through our chemical smells, when we are in pain they pick up on it. Shes a very special girl!! No it does not matter what type of breed you use. Although you have to remember what the public will react to also. I trained a male Newfoundland and he was trained for support, helping in aiding one to walk. He was excellent at his job, but the public responded negatively due to the size. Some people are afraid of dogs so seeing one that is 175lbs and furry became quite a problem. I now only train the females as they do not get as big. The main thing we make sure is we temperment the puppies before starting to train. You want a puppy that is confident, yet submissive to you and not afraid of new noises and such. Its a lot in the personality to know if they will make a good service dog or not. Some we train our tiny for those in wheel chairs who want a smaller dog, some are bigger so they can pull a wheel chair. Its also important to know the health line of the dog if you can, this way you have a better chance of having a dog with no health issues, although any thing can show up, but the chances are better if the parent and such have great health. Well I applaud all the pets out there who make our lives so wonderful! God knew what he was doing when he created them, ha. Brenda R.

I tried to post last night but I see it did not go through. I have an organization where we train service dogs and they are used for many different reasons. I myself have POTS and have a service dog of my own. Many organization feel you have to be very ill before you are even considered for a service dog. We do not feel that way. Our dogs are trained to help those with phobias all the way to one who is very disabled. It dose not matter to us the task that is requested for the servcie to be preformed. I feel more comfortable having my servcie dog carry all of my medical information. I had a bad episode in a store once and was stumbling around and no one helped me, I think they thought I was drunk. I mangaed to get to my car lie down and called my husband who called an ambulance. I had a TIA stroke. From then on I knew I would have a servcie dog so people were clued in to helping me if I need it. So a servcie dog can preform many things not just for wheel chair bound. If anyone would like more info feel free to e-mail me. I love my servcie dog and now have much more independence going out shopping and such. Brenda R.

[Yes I do!! I can totally relate to you. I think i live in the same place as you...I have not posted in a while. Any ways the Walmart I go to is horrible with the lights. Its almost like it makes me disorinated. Its hard to consentrate or even focus. But put me in a different light I am better. I totally can relate to you. I also know what you mean by feeling like you are falling apart. I have a lot of the same symptoms and the pain is unreal. I can not even lay on the back of my head any more, it hurts so much, my head gets a head ache right away, it just pounds. I can only think its cause the blood is not traveling up to my head, almost like I cut off the supply when I lay on the back of my head. It sure is weird, but i am stcuk laying on my sides only. I have no idea why the lights bother us, but I do know they are doing it. I try to avoid the ones that are so bright! Brenda R.

Hi, I was just wondering if any of you have a weird sensation in your head when you move it? Like a sensation of almost being drunk, thats the best way I can describe it. Its not a fun drunk feeling either. We it use to happen when I moved my head, now even moving my eyes a lot and fast it bothers me. Like for example I went to a basket ball game and I would watch the basket ball, being bounced and passed to another player, just moving my eyes and watching gave me this feeling. I felt like i had little control over my eys and felt really light headed and sick to my tummy. I had to stop watching for awhile and just close my eyes. Can anyone relate to this? Brenda R.

Hi, I have not posted in a very long time. Just was informed about the service dog thread today. So I have to reply!!! I have POTS and also have a kennel where I breed our own dogs and train them for service work. I started this organization about 7 years ago. I was not as sick then as I am today, but still have it in operation. It has been interesting to read everyone veiw on a service dog. Unfortuanatly most organizations have a waiting list that will keep you waiting for ever. Also if you are "not sick" enough they will hold you off. Its a big misunderstanding what a service dog can really do for anyone who feels they are in need of one. We do not turn anyone away. You can have something as what one may consider a "minor" illness such as a phobia or you can have a major one. A service dog provides a service, it can be any service as long as it is helping their partner with what that person needs. I myself have a service dog. I have pushed my self to my limits shopping one day and started stumbling and looked like I was drunk, my speach slurred and I was asking for help. People thought I was drunk. I dont even drink! No one helped me!! I stumbled to my car, feel on the seat and called my husband, he called an ambulance. I had a TIA stroke. So yes cell phones are great IF you can make the call, but what if I couldn't? No one was willing to help. But when I have my service dog with me, people automatically know I have a disability of some sort and if I need assistance are more willing to help, if I stumble I am not looked at as if I was drunk when my service dog is with me. My medical conditions are in the vest along with what i am allergic too, who to contact and how to treat me until i am in the arms of some one who knows about pots. So yes anyone as minor or major can benafit froma servcie dog! You can check out the Snowflake Foundation at www.richlandacres.com if you would like to. Anyone serious in looking for a service dog may contact me, but please keep in mind we are a small organization and our trainers are limited. I will be happy to answer anyones questions on a service dog. I hope to be able to be more active with this group and posting. Brenda R.

Yes I experience it too, and get aggitated as you do. I find that if eat it changes and if I eat bigger, normal meals it really jumps, so its best to eat small meals. This often happens to me if I am over active on a good day too, then try to rest its jumping. Not many great days to be over active, but cherish the ones I do get. Take care, Brenda R.

I am with you on this one too! I know when i read some times its hard for my brain to function when I move my eyes back and forth, I get very nauseated and feel like I am spining. Its not dizzy like the room is moving just feels like it, weird I know. I guess this would be the same as watching all the people in the mal with the weird lighting.i went to a stock car race last year and wont do that again! I was so sick, felt like I was checking out. Guess we all preseve things differnt then normal people now. So...nope not alone, hang in there! Hugs, Brenda R.

Lime salt and water is like gatoraide which helps a lot of us, but suggest the lime water for those who cant drink any thing with sugar. Best wishes, Brenda R.

[Hi Roselover, welcome!! I to have pots (5yrs, 1 yr ago diagnosis) & fibromyalgia (15 yrs). I am on nadadole for pots and take ultram (tramadol) for fibro pain. I do have another illness pertaining to my muscles still in diagnosing plan. Not sure yet, have more tests next week. You will find lots of info and help here. Just wanted to welcome you. Best wishes, Brenda R

Hi Roselover, I to had a hard time understanding how I was going to exercise. I started just doing little things in bed, few leg lifts, then rested, few arm lifts, rested, a few 1/2 sit ups, then rested. It was a bother to do such a little at a time, but eventually came around to more energy. I honestly am not as active as I use to be, nor will I ever be. i still have those bad days, where my recliner is my best friend, but trying to exercise when you can will help you. I also have a muscle disorder so this plays a major part in my exercising set backs. Best wishes, Brenda R.

Jackie, Interesting about the dyflucan. I know I had a major yeast over growth and I to had problems at first. Doc, said hang in there, it is the yeast being killed and after my second dose felt much better. Best wishes, Brenda R.

Kathrine, I know of a wonderful doc. at Mayo in MN if your interested. he is a nurologist, his name is Dr. Brian Crum. he diagnosed my pots and is very helpful in looking for a cause, just push on him a bit. feel free to e-mail me if you have any questions. Brenda R.

I am affected by sugar badly. I have candida, yeast over growth, but it also increases my heart rate. I have a wrist BP cuff with pulse indicator and I noticed after eating sugar my heart rate sky rockets. I am glad to hear you are good with sugar! We all are different. So how about you having some cheese cake forme, oh a choc. candy bar, um...ha ok no more torture for me. Actually I am doing good with not craving it. I have just learned its poisen to me. Best wishes, Brenda R.

Is this a window ac or central ac? I do believe you will see a difference when the filters are changed. Are you allergic to mold? I am so this is why i ask...if you shut the air off and do not use it for awhile all the mold spores dry up and sit waiting for the next bit of moisture to grow again. If the filters are not changed before the next use you will have mold spores hanging around. It is best to put new filters in every season used. If you can also clean off the air condition, if a window one, and if central air, make sure you have the filter changed and also duct work cleaned out as best you can. I agree with you, your flare sounds like the air conditioner helped it along. Hope you get it figured out, i know I am no good in heat and humidity. By the way MN is almost snow free. Yea!!! Best wishes, Brenda

Hey I am with you! Rant and rave we must. I guess for now my energy is not high so I cant do to much physically ranting, ha. i guess to better the research we all should try to some way or another get our illness out in the public, make people more aware of it. We could make business cards, title it dysnomina, or what ever and then have a web site to go to maybe a few symptoms listed, this could help. We could also have our local newspapers do a story on the awareness of unknown illnesses, such as ours. Some people want to stay private about what they have and that is fine, we could still do this with out exposing ourselves. guess i am not to private and have a special page on my web site for this. You can see it at richlandacres.com I think getting the awareness out will help. You mentioned fibromyalgia which i also have. this is now finally making public news, I have even heard it mentioned on t.v. It was never spoken of for so long...the awareness blossomed. good ranting! You got us all thinking! Bless you! Brenda

Your story is such a sad one and I have so much compassion for you. Many hugs to you! I sure can relate my story is a bit like yours, just a little different. First off the best I can help you with is to share with you what worked for me. Definately take time to grieve, cry it out, all of it, the hurt feeling that built up , the anger, the loss of your mother, have a good cry. Then grab a hug from some one close to you who loves you, if you cant find one, I will send you a cyber hug! The next step is the hardest for some to take and some dont do this and it does and will eat at you forever until this is done. That is forgive... forgive your mom for not being the mom she should of been, forgive your brother for hurting you, forgive who ever you need to. Some times its hard to do this, but with out doing it it will weigh negative bad feelings and you will never be free of this burden until forgiveness takes place. this does not mean you have to do this to anyones face, just in your own private space say I forgive you, iI do not like what you did and may never agree, but I do forgive you. This will lift heavy weight off of you. Hold your head high and proud, no matter what your life was like. We are all equal, children of God we all live here with our own story and experiences to share and help each other. You are special and chosen! You are in my prayers and I pray you will be comforted soon. Many hugs to you, Brenda We are always here for you!

Dear Black bird sings, I am sorry to hear of all of the discomfort from the symptoms you are having. I would definately try to find a doc who will listen and help you. Its so hard to keep jumping from doc. to doc and then they think you nuts to do so, but stay strong and keep doc. shopping until you find one who will help. I would find a pots specialist and see if they could do an anti body test. This will help if you have the anti bodies they will know which direction to go in. If the anti bodies are there you may have tumors that are normally hard to find that could be causing the problems. It also could be your pancreus not working properly and that is why you keep loosing weight. A gal who I know that has pots just found out her pancrus was not working and has lost weight cant keep weight on even when she eats. She is 89lbs. They finally did the tests and found the anti bodies also in her, so she will be going for more tests to see where the tumors are. There is so many things that can go hay wire with our autonomic system not working correctly. Being swollen as you say you are is not normal!! I know its painful too as I am the same way. Still waiting to find the cause myself.I get swollen when I am active doing dishes or some thing, assuming its the blood pooling. I did have pain with the compression socks, but after awhile the pain went away and it does help with the swelling. If you have anti bodies though you should not be wearing the comp. socks, so get the test first. Best wishes and sending good wishes your way for relief from the discomfort, Brenda

I am not sure what its all about either. I do have what you are talking about but mine has turned into being very painful. Instead of the cold popping feeling it now is shooting sharp pains and muscles cramping. This may not be related to pOTS at all, at least thats what my neuro said. Hes waiting to see if I have parkinsons or some type of muscular dystrophy as I also seem to have muscle deteroration. I have heard the feelings you are having is due to the blood not flowing correctly. I am not sure but hope you get answers. Keep exercising though as you want to keep in shape, helps the pots. Best wishes, Brenda

Hi Tammy, I am on Nadadol and my doc. started me out at 10 mg and I got very sick. Then he lessened it to 5mg. This worked much better. Then as my body adjusted to it, and started acting up again, more and more my doses slowly went up, 10 mg 1 time day, then 15 mg, now 20 mg in morning and 20 mg afternoon. I did not tolerate it well to start with. I woul talk to your doc. and see if you can start on one very slowly, very little mg and see if this helps. I know with out my nadadol I am so shaky and feel anxious due to the racing heart. Hope you find some thing to give you relief. There are so many out there as we all are different and what works for one makes anouther sicker. Its all trial and error. Best wishes! Brenda

linda, My heart goes out to you! I can relate to every symptom you speak of, I to deal with all of it. I was diagnosed with fibromyalgia 15 years ago, and POTS 1 1/2 years ago. I am dealing with the muscle pain, cramping and weakness although the strength is there just my muscles collaps when using them. Mostly thighs, shoulders, upper arm, neck & facial muscles. No definate on why yet. I also have this flare up which knocks me down bad and I get this flushed feeling in my chest neck and face. Then it tingles and I get this adrenalin rush feeling. This sets me off into tremors and violently shaking. Some docs say seisures others dont know. I hate the waiting game and not getting any where too. Be patient stay with us and no dont worry about MSA for now. its normal to think of it with all the symptoms, its in the back of mind now and then too. But there could be a combo of illnesses causing this all to happen,. Its hard for doc. to sort it out and very frusterating for us to deal with it until they do. Hang in there , I will be rooting for ya. Take deep breaths relax and know we are here for you! Hugs, Brenda