StaceyYount

Hi Everyone! i know it has been a longggg time since I posted but very bad time POTS wise lately. My question is 2fold, has anyone else tested high for Testerone? It is not hugely high but it is high enough to be odd. I am in menopause.I donut have any symptoms of the high level. Also all of a sudden my BP is high especially the diastolic, has anyone experienced this and have any explanations. I thought I had this POTS symptoms set down but apparently nope!😊 Any light or experiences you can shed would be greatly appreciated. Thank you and wishing you all a good day

I sooooooooooo hear what you are saying!! I got sick 2 months after I got married and all my friends got married after me or had the kids or have jobs or have and can do thingssssssss so many things I wanted to do and somedays it just makes me crazy! It is soooooo hard I know and I just wanted to say you are not alone! I just try and get through those times let myself mourn and eventually I will get back to my hope and day to day living. Hang in there! I hear you and sooooo soooooo understand! Sending you support!! Stacey

This happens to me too and I was just diagnosed with Vasomotor rhinitis as well!

Thank you all sooo much for your support! I really really appreciate it. I am still reeling from it but am getting better, amazing how something so mean can effect you...isn't it? I think that is a great idea that we should write the doctor, he probably won't ever see it but at least we could defend ourselves and maybe someone else will not get treated this way. Thanks again.

Hey everyone! Have been around lurking but not up to posting much for awhile now. Sorry about that, I will try harder but I had to type this to people I know would understand . Like many of you I get the horrible headaches and for me the only thing that will stop them going on for 5 or 6 days is an injection of demerol and phenergan. I used to be able to call my PCP and he would then let me come in for an injection. But he retired so I went about a year or more surviving through them. Then last year we found a new pain management doctor who said that again if we called we could come and get an injection. The PA told us that all we had to do was call and if she was not there ,one of the other PA's would let me come in. Was going along fine until Monday. I got a horrible headache Friday night (of course) and just kept telling myself hold on til Monday and you will get some relief. I call Monday and the nurse says that my PA is not there and the one who was there would not see me, to go to the ER. (useless here they give you benadryl) So i start to cry (could not help it) and she was just so cold, "It does not matter if it is not ok" she said that is what he said. So my husband takes the phone and tries to find out why we can't come if our PA said we could and the doctor has said we could. But she kept saying the PA won't authorize and he asked her to ask again and to ask the main doctor, she got testy, he got a little testy and in the end she said she would ask the main doc. Never heard from them but we knew my PA would be there on Tuesday, we called and made an appointment. When we got there they told the front desk not to collect a payment that they wanted to see us first. I am still in headache **** mind you. So this nurse comes out and I can feel the waves of dislike rolling off of her. She takes us in a room and says that this is not an official visit because the doctor has decided to take you off his roster of patients. SO I burst into tears..could not help it again. And I said why? She said because of a verbally abusive conversation with your husband. He said I am sorry that we both got mad yesterday and I apologize she I am not mad sir I was not mad (yea right!) I am sitting there hysterically crying and she is just siting there staring at me and trying to give me a letter that he no longer accepts me as a patient. Then she said he also says you questioned the way he runs his practice...well a bit but come on and she was just so spiteful and so mean. Jim said you do realize this is the only place she can get her pain meds and She looked at me and said YES I do. The doc did authorize one last injection which I took of course cause by then my head was going to explode. Then she says all triumphantly do you want the letter now or wait for it to come in the mail? I have never met a more spiteful person. And my husband never even raised his voice he did not say anything wrong or mean, I heard the whole thing. We did not get to see the doctor or our PA just her. It was soooo awful and SO out of spite or whatever she now has put me back into headache **** again. How can she do that? How can they do that? I had not had a bad medical experinece in a while and you forget. It was just awful. Now we have to find someone again and find someone who will listen to me that after 12 years and many meds I know what works the best and it is that. This was also the place that sent me to get a temporal artery biopsy (never get one of those!!!) I am hoping my PCP will figure something out but we will have to see. Man how could someone like that even want to be in the medical field? Just had to share that with you all. Sorry for the rant....

Hey everyone here is a smile for you I just happened to come across this palindrome that describes us when we are in a hole or crash or probably everyday! POTS NONSTOP

Thank you all for your continued support!! Yeaa I have seen that movie it is exactlyyyyy how i feel! Thank you Morgan your words helped and Lina too!

Sorry I was so long in responding I did not get any email telling me there were responses. Thank you alllll sooooooooo muchhhhhh!! Your support and more than that your understanding is so appreciated. I send you all so many hugs!! I am still so sad but am trying to cope with it best I can. I think I tend to just not think about it and then it all hits me... It is true that you think well this is going to go away, it has to but maybe maybe not and that is so hard isn't it. It was the first time my ob/gyn had seen me so she really did not understand that I am bed bound most days and cannot take care of myself so a baby would be impossible. I wishhhhhh I could say I could but many days it is all I can do to talk to Mukie (husband). I am actually trying not to think of the whole baby thing to much cause all I do is cry so I figured I need to face it but not quite yet. I gotta get stronger and over this deeeeeeeeeep pit I am in before I can ever think that for sure yes or even worse for sure no. You know that sad thing is I would have wanted a houseful. And it is hard because I am the one that is keeping Mukie from it as well...he is sad too but has never made me feel bad because of it. It is also you know I have no treatments now, I have tried all the meds and for me they either make me worse or I can not take them. Just did the round of doctors once again. One thing we are investigating is vasculitis and perhaps it is the reason for my horrible headaches. The headache doctor seems to think that it maybe temporal arteritis (sp?) so a temporal artery biopsy is in my future. I just don't wanttttt to be ill any more!!! She cried! lol I will keep on fighting but do you ever just think I give up I cannot take this anymore? But then I think of the Peanuts cartoon that said where does one go to give up??? Thank you again...knowing I am not alone helps me more than i can ever say!! HUGS to you all!

Hey everyone! I have been reading but not up much to posting but today I felt I needed you all. People who would understand. Today I will have been ill for 12 years and each year that passes I say I cannot believe it has been this long. But this year it seems I realize just how much this illness has taken from me. I turned 40 last month and so had to go for my womens yearly check up and basically I was told I was running out of time. Which I knew and it has been something that has been weighing on my heart but not something I was ready to face. But I am running out of time and we had to have the discussion that I need to face that I may not ever be able to have a baby. Though she did say if you want to I will support you...I wanted to scream I can;t even take care of myself there is noooo way I could take care of a baby. I am not ready to face the idea that I will never have children (I burst into tears in her office poor thing) But anyway it just brought home to me that not only has this illness given me pain and suffering it is also taking away things I sooo wanted and things my husband wanted. And it is just not that we would love to travel, he would especially or just even the simple thing of taking a walk down a street holding hands that is just not part of our lives. My father has been really sick and realizing alll the time I missed being able to spend with him because of this. I am screaming inside and the fight and the belief that I will get well is going. I feel like the illness is winning and 12 yearssssss god that is just unbelievable. I have been ill and not able to go or do by myself in 12 years. I try to stay strong I try to stay positive but I guess today it is not possible. So much pain, so tired of feeling like crap all the time even on "good" days. Just wanted to share with people who understand...friends and family try but it is not happening to them so they can't truly know. 12 years please don't let it be 12 more Sorry I will stop now and hope that hope finds me tomorrow.

Yea ooops sorry (blush) I did look to see if someone else had posted it and totally missed it. I agree with all you said. And it seems over and over they say ooooh we have maybe found the cause of CFS or dysautonomia but then is the well we don;t have any treatments but this is a step in the right direction..yessssss but come on find a treatment!

Just saw this online and it is being reported in many newspapers...maybe since may of us have dx of CFS as well maybe this research will lead a finding for dysautonomia It is sort of a long article so I just put in link. Virus Link To Chronic Fatigue Syndrome? http://www.cbsnews.com/stories/2007/09/13/...in3260068.shtml Very interesting

I am so sad to hear this! My thoughts and prayers go out to her family.

HI! I live in Titusville and I don't know of any doctor but there is one member who has been to one there in Orlando. I will try and find his name for you and maybe she will come on and see your post! And am in brain fog or i would say oh just ask.....but name has escaped me (sorry when you read this!) I will get back to you! if I can find the name! Ahaaaaaaaaaa I found it!!! His name is Dr. Snell. He is with Physician's Associates at Sand Lake. If you want the number you can pm me! She has gotten great treatment from him. Hope this helps Welcome to FL

Linda, I thought i remembered you had been dxd with this too, I will def email you, thank you so much!! Corina, I miss you and thank you for responding. You are so right there are so many things that they say well we don't know why and then you have to go home and deal with it. It is very hard. I hope you are well and am thinking of you often. Much love and hugs!

HEY ALL, Been in a deep hole but had to venture out becuase I had an appointment with a pulmonoligist today and he siad that I have restrictive lung disease. But he is not sure why. Also looking at asthma and have to go get a CT of Lungs. I have had a bad cough on and off for past 3 years that nobody has been able to really say why so maybe this could be an explination. Does anyone know if it is realted to POTS? I am exhausted so I will keep this short and write more later but if anyone can say me too or any info would be great! Even if I am not on a lot I think of you all and hope you are doing okish! HUGS TO YOU ALL!

Melissa!!! oooh I am soo sorry to hear this.. I am sending you so much love and healing thoughts and will be thinking of you everyday! Take care and hoping you will be feeling better soon! Much love and many hugs! Stacey :-)

Melissa I am so sorry this is still such a struggle and it infuriates me that your doctor is not calling back and that your pharmacy is not doing its job and oooh if I could but take it all a way. I am sending you many hugs And I soo know how you feel how frustrating and just sooo annoying really when people say ooh you got dressed today when they probably don't reallly realize what a struggle that was and that like you said you are not 2. My gran always says "I am soooo proud of you!" It is sooo hard to feel like someone when everyday is a struggle just to do what most people do without even thinking. I just wanted to say I hear you and sooo understand! Vent away and know we are here thinking of you and sending you strength!

Wow i have high cholesterol too and had it even when I was 84 lbs so for me too it must be genetic.But i wonder with so many of us with it if it is just another lovely part of this disease. Very interesting!

My sed rate is always high last test 111 and no one has explained it..so maybe this will explain my headaches and that sed rate.

You just described my headaches exactly. And sometimes my hair hurts so bad i can't brush my hair. I always wondered if it could be temporal arteritis.

Thanks! I knew you would understand! And the fact that we went over there to see the electrophysiologist and now we have to go back to see him..grrr..ok maybe not over frustration yet heres a few more faces lol :blink: :blink: And yea you could totally tell he had not even looked at chart. How dumb is that to have to sit there and read in front of patient. The BBs gave me horrible headaches some of them, some made me feel much worse and some made my bp dip way to low.And a many of them with the side effects did not really effect hr at all. We have tried sooo many! my Heart rates standing 165-177-190 is the highest i have taken it at but I guess it could go higher i just have to sit at that point :-). During the TTT it was 165 when they stopped test. 90 laying down. Now lying its 100-110 Sitting 120 -140 and then on up when standing. My bp is higher now so it may not be as bad. You know I would have really liked to know what my hr did during 24 holter monitor guess we will ask for copy of reports meant to do it today but we were there so long... And I hated proamitine. I think I tried it at least twice. But again we will try it and hope. Ok I really need to go close this computer now and rest! lol A good bollywood movie is in my future! ahhh happy smile

:huh: :( :huh: :huh: :huh: Sorry for all the faces but I just came back from new cardio and I am sooooooooo frustrated and so the faces are helping. Jeez we go over there again and I get the echo after waiting 20 minutes..then put in room to see doctor 30mins later he comes in. AND SAYS so did that medicine help you and did you see Dr. Davis. And my husband and I look at each other and hubby says you said you wanted to wait to start meds until after the tests. And Dr then looks at chart and says but what did Dr. Davis suggest he is the electrophysiologist. And we we both said well we have not seen him yet we are here for test results. So then he looks at chart again ( he had not looked at before he came in can you tell) And then says ok we were discussing using a BB and proamitine together cause you have both problems and we need to address them both. And then he says Dr. Davis is our ELECTROPYSIOLOGIST and he wants to see you!!!!!!!! GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR that is why we drove 45 mins to this office. So he says ok we will start you on these meds and then in next 2 weeks come see Dr. Davis and then I will see in you in a month. We had to ask about results which he barely discussed oh yea your holter shower high hr your echo showed mvp and high hr. WELLL DUH and I know I am glad it did not show anything else but he could give me some numbers and at least seem like he had reviewed recently!!!! And then now we have to come back over to see the Electrophysiologist. I have all ready tried proamitine and it did not agree with me an neither did bbs. And yea it has been awhile and maybe now they will help but it just the same old thing well try this and we will see how you do. God I just want this not to be POTS not anything worse (cause my husband always what you want something worse ! grrrrrr) Anyway sorry but why do I feel like this is just the same old thing. I feel like I was trying to get a new and fresh approach and got the same thing. And even less cause I felt like he hardly thought about this and why the heck did we not see the electrophysiologist in the first place. Oooh and he said well you know you cant keep having pulse rates above 100 yours is even 120 and you know we have to slow that down. And I was like I am sitting down do you even know what how high it gets when I stand?? and sorry you all, just frustrated!!!!! grrrrrrrrr And then my helpful husband ( who usually is great) tells me not to get upset and to not get frustrated and I said well can't I vent and he says well the more upset you get the worse you feel and then I have to take care of you!!! arghhhhhh. Thanks for the support mukie! But he frustrated too I know but geez! And hey maybe they will work now but it is hard to try something again that you know made you worse last time. Wow am rambling just had to type to someone who understands this frustration. I should have known that doc was going do same thing when he said well I don't have a magic pill! And I know they don't but oooh this illness is just tooo much. I told my hubby half the problem is I don't want it to be this stupid illness! But it is and now I must accept that again but the fight gets tiring sometimes you know. Thanks for listening sorry if I rambled.

I too have low B12 and get shots every month though technically my B12 is not low it is 200 and below 200 is considered low but on my test results it says that 30-40% of patients with B12 levels between 200-400 can have some of the symptoms and neurological changes associated with low B12. My dad has pernicious anemia and uses the (sorry brain fog can't remember word) the pills that dissolve under your tongue and they have helped him. They did not work for me so I get a shot every month. I was not sure it was helping but it was time for my shot before last doctors visit and the next day I was not as exhausted as usually am. So maybe that helped. Anyway point is that if your level comes back between 200 an 400 it might be a good idea to add some B12 in. :-) Ooh had I noticed in the post before the word is sublingual!!

Thanks! I am hoping! Yea Corina I think he figured after 3 TTT and all positive ( and made me feel terrible tooooo!) that there was no need thank goodness! :-) We go back in 2 weeks and then he said he would suggest the combination. He said well you have had it this soo long 2 weeks more won't hurt and then we can get these tests done first! :-) Thanks for the encouragement it means alot!

I have been tried on several bcp and all but one gave me extreme nausea too. The one i used is not prescribed as much anymore and of course now brain fog has hit and I cannot for the life of me remember the name of it but I will find it and post it.