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Louby Wow, My knee high compression hose (20-30 mm) were 65.00 for one pair. My insurance covered it thank goodness. I can't believe they are so much less over there. Makes me wonder! silvia

Hi I am in North western NJ, on boarder with Easton PA, per mapquest it is about 2 hours. I will check back hear to see who is gone etc and how it went. I just came back from CCF, so I want to give some time for the lopressor, new knee highs, salt diet etc to see how that will go. I will probably try to get an appt if all goes well sometime in the late spring or summer. I see he takes my insurance which is good, and he is a neurologist. Please keep us posted if you have gone and if your satisfied. Thanks again Silvia

I had an endoscopya few months before my POTS diagnoses. I had lost my appetite and had swallowing problems. It was a piece of cake for me. I was out, and woke up just a few minutes after it was done. I had no problems of any kind thank goodness with anything. I do know many people without POTS who have had them done and no one I know has had a problem. My hubby ( no POTS) has had a colonosopy, he had no problems after it either. Just hard to try to " clear" himself before the procedure. Hope it goes fantastic for you. Silvia

This is great. I am in NJ, and the trip to CCF was 7 hours. Not sure how long to Ct, might be 3 hours, but that is much better. Can you post phone number or address? That would be great Silvia

Swallowing problems back in August were how all this first started. I had a barium swallow and endoscopy, all normal. I did not feel as bad as I do know back then, nor did I have the shakes, but I could not eat! I took prevacid for 2 weeks and the problem went away. It felt like food was stuck in my throat and for a few weeks I was on practically a liquid diet. Took a while for it to go away. If she can't eat walmart has imitation ensure, I lived on that for a few weeks along with yogurt. Ask your Dr. about if it could be heartburn or Gerd. Silvia

I would never discourage anyone from the joy of having kids ( I have 3). Mine are 13, 11 and 7, however I have been more emotional these last few months when my symptoms started because I can't do alot with them. I was always running with them to Girl Scouts, gymnastic, dance, basketball etc. I was always helping with functions, room mom and all. Now I am just happy to take them and pick them up from school. I know the pregnancy might be hard, but its emotionally hard to not be able to do things with them like you would like.

Don't have full blown POTS, but do have BP drop and HR increase on standing. I live in NJ and its been colder than usual this winter, not sure if its this partial POTS or the frigid Canadian like weather, but I am wearing layers. My hands and feet are frigid. I don't remember having feet this cold before, but I might not have paid attention, since last year I had high BP and was feeling fine. Its 70 in the house and I am still wearing a long sleeve shirt and a sweatshirt most of the time. I dread driving my kids to school in the morning. I run out and start the van and let it run for 20 minutes!

HI I don't have full blown POTS, but was put on florinef and lopressor ( beta) and told to wear support knee highs. ( my HR only went up 20bpm, bp did drop) I am on 12.5mg lopressor, once at 7am and one at 2pm. I think my internal tremors are getting a little less severe as I went the whole day yesterday with no ativan. I am still having internal tremors in the middle of the night, so when I wake up if its 2am I can feel them. I am going to ask if I should be taking lopressor before I go to bed. I don't want my BP to drop too much however. What kind of dosage is everyone taking and at what times?? Thanks Silvia

Good Luck with your daughter. I can't imagine what a young person must feel feeling so bad some of the times. I wish you all the best and keep in mind if this Dr. does not do it for you there are many others. Suerte Silvia

Hi, I had not started a salt diet when I took the tilt table. I am trying hard now to eat salt, but between lack of appetite and not used to the salt its hard. Also since Supposedly I don't have full blown pots I am easing into it. Got fitted for support knee high hose, but I needed a small and they only had med and large, so I have to wait. Autonomic nervous system test was 4 phases Laying down on table hooked up to BP machines, heart rate and such. Bp also taken on ankle as well as arm. I had some other device on my ankle made of lates as well, maybe to measure swelling?, not sure First had to blow into a tube machine to see how it affected me then had to stick hand in ice water for 2 minutes, that was hard. They told me if it was too painful I could stop. I lasted, boy it was painful Third was injection of something to temprarily make my BP go up Third was smelling something that made me BP go down I was verbally told test was all normal I had the tests done at the Cleveland clinic by Dr. Fouad. she is supposed to be an expert in this field, maybe not like Dr. Grubb, but I think she seemed to be good. Silvia

Hi, I was on the tilt table probably for over 30 minutes standing. I know it was much more than 10 minutes. I got very hot and palms go sweaty. Had an IV, but nothing was injected. had an autonomic nervous system test and was told it was normal. Echocardiogram showed signs of heart " really squeezing", tech said something about maybe not enough volume. I think my blood volume is low. so far BP has stayed good with the extra salt, though I am not eating as much salt as they would want yet. Hard to go from no salt to lots of salt Silvia

Hi I just realized I made a big typo. I am only 43, not 49. Calculator and computer keyboards are reversed. So much for proof reading. I just got a call back from a nurse at the clinic. First nurse said I had POTS, this one said it was borderline because my heart rate started out high 82, on the Tilt table test. went up to 102, which is high, but only 20 BPM. You have to have 30 to be POTS. My blood pressure did drop on the test. I do have many of the symptoms so I will continue to post here. My Resting HR has been higher recently for some reason. Thanks again Silvia

You guys are really great. I love this board. Katherine What did you do to get rid of your tremors? Since I get mind daily and they are internal no one has an explanation. Besides being tired, that is the hardest thing. Ativan does get rid of them and that is used for anxiety, but it does control the CNS, so who knows. I got my diagnosis at the Cleveland Clinic last week, so I have not talked to my Dr's yet. Waiting for the report to come to me so I can show them etc. If something worked for you with the tremors let me know I am trying to eat salt, boy is it hard when your not used to eating it. Silvia

Thanks for the information and your concern This is all new to me My internal shakes are daily since this all started a few months ago. I have been taking ativan to control them as needed. It is very addictive and I only take small pieces seemed like the florinef make me shake more on the first dose, but don't know for sure if its coincidence or not. Tried lopressor again this morning, first dose I took with the florinef and I shook more than usual, I hate this Silvia

Before I found out I had POTS ( last week) I went to a psychologist for the first time for my constant internal tremors that started about September. No dr. can tell me what they are from so many assumed its anxiety. Had tons of blood workd and tests. I get internal tremors most of the day and if I wake up in middle of the night. small pieces of ativan help. The psyche wants to start me on Gabitril. He does not know yet I have POTS. Anyone tried Gabitril? I had more tremors and shakes with the 2 doses of florinef I took on Friday and Saturday. I though it was the lopressor, so I did not take it on Saturday but trembled more then ever. I will try the Lopressor again after I calm down Anyone one or tried Gabitril? Thanks Silvia

Being new to all this I am still not sure what is going on. Had tilt table test and was put on .1 florinef in morning and 12.5 lopressor ( beta blocker) twice a day. Started them on Friday. Thursday I had a decent day with not too many internal tremors. Besides being tired, I get very bad internal tremors, I get them if I wake up in the middle of the night etc. Have had these since September or so. I have been taking ativan to help with the tremors as they can be bad. Again, they are internal in arms and legs. Not visible on outside Friday was first day of medication. Took the Florinef and the Lopressor at 7am. By 11 am I was shaking much more then usual. Even the ativan I take to help with the shaking was not doing much. I thought it was the lopressor, so I did not take the afternoon dose. I took Florinef on Saturday morning again. By 10am I was shaking alot again. When this whole thing started back in september I was on Toprol for high blood pressure ( beta blocker like lopressor). Thought what I had was a side effect of it and went off. Blood pressure stayed good. I will be calling Dr. on Monday. I don't know if its the medicine, co-incidence or what. Any ideas would be great. Thanks Silvia

Thanks so much for all the wonderful responses and great reception. I am going to post a question separately as a new topic. Thanks for all your help, you guys are great. Silvia

HI, I am new to all this, 43 Year old female. After having high blood pressure for over a year, While on vacation, I developed some swallowing problems, lost appetite, lost weight. I went off High blood pressure medications. Still have loss of appetite, but weight stabilized. I have internal tremors most of the day for the last few months, so I went to the Cleveland Clinic to see what they could do as locally they found nothing and told me it was anxiety. Don't have a stressful life, except for these Internal tremors. (thyroid checked and its ok) They did not do much for the internal tremors ( I had lots of- blood and urine work here in NJ), but I found out that I have POTS. I had been eating low salt because of the High blood pressure. They know what me to eat salt. I was put on Florinef and low dose of beta blocker lopressor ( which I was on higher dose before for high blood pressure. I started on them this morning. I also have fibromyalgia. I am new to all this and its a little scary. Any idea how long for me to feel better. I can't imagine going from high bp to low bp in less than one year. Last year I was told to stay away from salt, now I am told to eat it. I also will be wearing support knee highs. I had the tilt table test and an autonomic nervous system test along with an echocardiogram. Any imput would be greatly appreciated. Anyone here have or had tremors internally? Thanks Silvia