Raisin

Did you have a tech named Narkeytah? She is very nice and turned up Don Ho REALLY loud for me per request. The people next to us must have been wondering what was going on. Lol. Good luck with the med changes. I thought I would react much worse than I actually did so maybe there is hope.

The place I went was in the cardiac rehab at Cleveland Clinic. And, I guess if you go to there "gym" they will monitor blood pressure and hr. But, it seems they are sending me off to a regular gym of my choice to do everything on my own. The upside of this is that I don't have a copayment for physical therapy everytime. Downside....I am on my own. Doc said if you have to retrain your body and wrote out specific instructions as to work load and target heart rates. He said even if you feel like doing more...don't....because that will mess things up. I am going to order a hr monitor before I begin. I also use a cane most days and wonder if my legs will cooperate on a bicycle but I will try and if not, maybe a rowing machine? UnderwaterThing...I did vestibular exercises before and we figured out I use my eyes and my muscles almost exclusively for balance (not my balance centers in the ears). It is worth a shot I feel but I think at this point for me it is a disconnect between my legs and my brain or spinal cord or something. Why can't the docs figure this ataxia thing out? It seems like a bunch of us have some crazy symptoms not really covered under the POTS umbrella but it is like an elephant in the room that no one acknowledges. Ugh.

I began my search for my Dysautonomia because of severe nausea which caused a 30 lb. weight loss. I never went back to my gastro guy since my diagnosis so I haven't been formally diagnosed with gastro paresis but I take Zofran almost daily for nausea. I eat smaller meals and don't do well with carbs or high sugar. I didn't even know there was such a thing as a pyloraplasty. Sorry I am not more helpful but I can certainly relate.

I feel for you so much! Hang in there! I had seen many docs at A major hospital and got the , "the test was negative...so Bye" approach until I finally happened upon a neurologist that figured out the POts. We are all part, it seems, of a subset of folks that are searching and searching until 'Jackpot! ' ...someone figures it out. Even then, it becomes a further struggle to figure out the "why" of the Dysautonomia. I have been in your shoes and at times I still am in your shoes. Keep the faith. Keep the faith. Keep the faith. We are routing for you! We could all probably have a group discussion on a mystery diagnosis tv show. Keep going until you get the answers you need. At one point I actually said to myself that I would have to wait until for my arm to fall off or something before someone would look at me and say, "oh...you really don't feel well, do you?" if I could be there and hand you a tissue I would. I will say a prayer for you Gemma. Keep rocking' girl.

Thanks everyone! I talked to a doc yesterday and he wrote everything out in detail for me and I can do all this at a local gym! Based on the Levine system as well. Starting out on the recumbent bike...moving slowly to the upright bike, etc. he said that 55% of POTS pts. Report a cease of symptoms and 90% report symptom improvement. He also said that you can't do more than the designated exercises (ie. feel good one day and think you should go longer) because the exercises are designed to retrain your body slowly so that the nervous system doesn't overreact. He also said, though, that you have to keep on exercising usually to keep symptoms at bay. He also said to do every other day( like you suggested looneymom) as going two days in a row can actually make symptoms worse. I also did a stress test and I did 30% better than most people in my age group which I am proud of because that means I am proving those folks who said, "you are just out of shape" wrong! Ha!

Sorry freaked that you feel so bad. I have not gotten fevers with mine. Actually, mine have seemed too low at times. I hope you are feeling better soon!

I believe that feeling, if it is what you are experiencing, is called "all gone." I get that feeling when I have PVC's or PACs. Or, I have also experienced "brain zaps" when discontinuing a medicine too fast.

Thank you so much! Interestingly, I had a stress test today and did quite excellent. I was walking at a very fast pace and my legs kept working! I mentioned it to the doctor afterward and told him how that seems so incongruent with having trouble with my legs while going for a simple walk. He said it actually did make sense because the treadmill is telling your legs to go as if that is the brain of the leg movements. If we are walking normally, our brains are telling them to go. Ergo, my brain has a disconnect somewhere. My friends have told me that for years....hahahaha! He said Parkinson's patients also do quite well on a treadmill.

My Pots doc said interestingly that SNRI s can be helpful with Pots symptoms and that SSRI's can actually make pots symptoms worse. I didn't do well on either of them.

E.Soskis, I just wanted to say you make me giggle. Remember when they were selling blue lipstick everyone? I think it was supposed to change color according to your ph or something? Of course, ours all would have stayed blue. Lol

Looneymom, I often get headaches but I have had migraines since I was a teen. They went from the horrible head falling off pain to no headache but ocular migraines whereby I only see half of things. Then, I was hospitalized with what they thought was a stroke but decided it was a migraine (no headache). At that time, I had left sided weakness (I just realized that is when my left foot first started flopping out to the side), slurred speech and horrible nausea. That lasted for three days and I couldn't even get to the bathroom by myself because my left leg wouldn't support me or land where my brain was trying to tell it where to go. I had three doctors in the hospital say, " you're complicated" and seemed to just give up and almost run out of the room. Sigh. I will google non neoplastic limbic encephalaties! IceLizard, I am on Midodrine and Topral but maybe I shall attempt Florinef instead. From my understanding, it is supposed to help increase blood volume. Maybe that is why they put you on that? My ataxia also seems progressive. Slowly progressive but progressive nonetheless. I am sorry to hear about the convulsions you are experiencing. There has to be an answer.

Wow! So much info! Thank you! I have cut way down on anything with gluten and have not seen a difference but it may be something that needs to be cleansed completely. I was tested for gluten intolerance and that was negative but I know some folks can fly under the radar. I did have low vit D and have been taking prescription Vit D ever since and my levels are now in normal range. I had a skin biopsy recently which was normal so no small fiber neuropathy. They ordered this after my TST test showed anhidrosis in all my limbs and hypohidrosis in the central spots. They then ran a neoplastic panel which showed nothing and tested for AChr antibodies which was also negative. Maybe we should all be looking out for those alpha A and Alpha B antibodies like it has been posted lately? GABA is very interesting and I am willing to explore it further for sure. I don't know if I may have too much of it or too little? I do take a very small doseage of Neurontin for restless leg syndrome and I don't sleep without it. Literally. Which may point, actually, to a GABA problem. It is so confusing, isn't it? LoonyMom, it sounds like you are testing everything and that is so cool! I am going to go Google crazy! Lol God Bless us All. We will get through this. Together!

Yes UnderwaterThing....I can relate. When I use the cane, I feel less "spacially disoriented" if that makes sense. I keep thinking my Pots is more of a symptom of something else but I have been tested in all kinds of ways for so many things. I do have hypovolemia and major blood pooling. I also have horrible nausea, bladder retention, bowel issues, migraines, neck pain and endometriosis. I guess I am writing in to the forum because I do get scared. I am anxious because I feel misunderstood by the doctors or that they are not understanding that when they say, "I'll see you in three months" , I am back at home nauseated and trying to get through another day without complete answers. I also feel that if I tell the doctor that I am scared, he will just reach out for the "you are probably just anxious" answer. That is not what I need. Sometimes I just sit and cry. Well, I hope the physical therapy helps us. Maybe it can point things out for us. Faith.

IceLizard, thank you so much for your help. That is exactly how and when it happens to me too. Do you have hypovolemia as well? I am supposed to start a physical therapy program for Pots Tuesday and I thought I would show it to the physical therapist. Maybe they would have input or they can tell the neurologist. My neurologist said to take more Midodrine but that doesn't help. I took the video to show him because I think he thinks I am just getting tired or anxious. Perhaps a picture is worth a thousand words?

I can't figure this one out. Maybe someone will have some input? I definitely have ataxia but this occurs after I have been walking fairly normally for a bit ie. the mall. I actually made a video of this with a friend of mine to prove to my neurologist that this is NOT anxiety. I can make it to about two stores or so and then my legs start getting very clumsy. My left foot actually swings out and then back in like a foot drop. Both feet sort of slap the ground kind of like a horse walks. Lol I use a cane most all of the time now. Can anyone relate or perhaps even know what this is? I dont know if it is neurological or vascular? Help please!

Hi Sleepbree.! I can't really speak on the HR issue as mine seems to be better on Topral which I also take along with the Midodrine but I do have a really itchy scalp about an hour after I take one of the Midodrines. I scratch my head alot which may look funny to others but who cares what they think, right? I read one of the side effects is goosebumps which it sounds like you might be experiencing? Not sure. I get migraines also but I have gotten them since I was a teenager. Sounds like a call to your doc is in order.

Yes...I would like to know too! I have been very nauseous as of late and I am wondering if it is from my low blood volume. It may be from Pots in general but I am hoping that if I increase the plasma....maybe decrease the nausea?

Thanks guys! I will give it a shot. In fact, I am kinda looking forward to it. I noticed Corina that on my sheet for the appt. it mentions a physiologist as well. I am glad you mentioned that they may be monitoring hr and things. I will make sure to tell them that my EKG went "funny" during the TTT too. I have doc permission obviously as he is the one that referred me. Lol I wish you well and I hope we all get better and better!

Anyone try intensive physical therapy? No one answered my previous post....perhaps I was too specific. Doc is prescribing intensive POTS physical therapy for me. I am worried that if it is caused by something else that they haven't figured out yet....perhaps it will just get worse? Maybe it is worth a shot in any case.

I believe suppository. I watched a video (can't remember if it was a link off here) of a doctor discussing autoimmune autonomic disorder and he specifically mentions treating a male patient who was referred to him because he was given steroids by his wife (a nurse) and his symptoms improved. He then tested positive for acetecholine antibodies confirming autoimmune. Something to chew on, eh?

Hi everyone! I am going to start physical therapy designed just for POTS at the Cleve Clinic next month. Doc said it was designed by a doctor in Texas and has had great results. He said it is intensive for the patient. Anybody have any experience with this?

Hmmmm...mentioned it to Cleve. Clinic doc....he said my steroid administration route (ok...now I have to mention that I was taking a suppository 2 times a day for horrible hemmoroids) shouldn't have made a difference. But, he said he will think on this. I am assuming he won't really think on this! Lol I guess I am not much help. Sorry!

I wake up gasping for air sometimes but not every night. Had a sleep study....didn't do it when I was being watched (of course). All came out normal.

Hi Blobbydodger! I was going to start a new thread re fashionable compression. I somehow found a website with a co. called Rejuvahealth and ordered tights for gals with great patterns. While perusing, I did see that they showed compression socks for men with a herringbone pattern. I showed my autonomic doc today my socks (white with roses) and he said that he has seen some tights for athletes that are actually a skin color. I don't know where those can be found but they must exist!

I was driving home from another Dr. Appt. today and I am feeling quite depressed. I thought ,perhaps when I keel over and die, they should put, ' See, I TOLD you I didn't feel well!' ☺ I would like a drink that tastes like chocolate milk please.....I will supplement with a salty snack. Thanks for starting a pity party....it is just what I needed!