miranda Posted January 31, 2010 Report Share Posted January 31, 2010 I am sorry but I am so worried about myself.I am sitting here and cant stop crying. Ive been doing everything right , salt , fluid , compressions....so tonight I felt shakey whilst cooking dinner , and took my BP and it said .....74/54 and pulse 98.I feel so fed up and feel this is gonna be my life , I cant stop crying...... why has this happened to me , Ive always been good , never smoked or taken drugs , I just feel broken inside. Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 31, 2010 Report Share Posted January 31, 2010 Oh Mirry,It will get better. You will find your "new normal." I know you've been dealing with this for years now, but you finally have a DX and are just starting to find a treatment plan. As my son's doc said (at the beginning of finding an effective treatment plan): "We've only begun to fight!"Salt, fluids, compression- all good. If that's not helping enough, time for florinef. (Isn't that the one your doc recommended?) remember, start very slowly with it- tiny, tiny doses until you figure out what works for you.Cooking dinner can be exhausting- all of that standing. Consider getting a stool so that you can occasionally sit when chopping veggies or stirring at the stove.I also have a low BP- your HR is trying to compensate- that's good. No tears- contributes to low blood volume . Just kidding . We have to laugh at ourselves sometimes. Seriously, I suspect that adding florinef to your regimen will make a HUGE difference.Hugs-Julie Quote Link to comment Share on other sites More sharing options...
firewatcher Posted January 31, 2010 Report Share Posted January 31, 2010 Mirry, with the constant crying and heavy periods, it makes me wonder about your thyroid. I was an emotional basket-case when I was hypothyroid. It can also make your periods REALLY heavy. Have you seen an endocrinologist? Have you gained weight or are cold all the time too? It might be time to change your amytriptaline to something else as well.Just thoughts.((((((((((understanding hug)))))))))))) Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted February 1, 2010 Report Share Posted February 1, 2010 Mirry-My heart goes out to you. I have been there. Not understanding why nothing seems to be working, feeling like you dont deserve this and most troubling, when will this ever go away! Trust me when I say there is hope. It is difficult. You will need an outlet to get through these feelings. I have a prayer journal that helps me and I've just started the process of going to see a counselor just to talk about dealing with this crap! Please know that there are others who know and who really do care about how you're feeling! I wish the best of luck to you!KC Quote Link to comment Share on other sites More sharing options...
miranda Posted February 1, 2010 Author Report Share Posted February 1, 2010 morning everyone , I want to say Thank you from my Heart, for being there for me yesturday . I was distraught and ended up sleeping very heavy all night from exhaustion, lol.Julie , you did make me laugh - no crying cos I could dehydrate I must remember that one .I am still waiting for my neuro to write to my doctor about me having the Florinef , cos my doctor thinks theres nothing wrong with me ( my blood pressure has always been near normal when I see him) , my neuro was furious when I told her that , she said she is going to write him a stern letter .Firewatcher , my thyriod blood test has always come back ok , however I always have a low body temprature and always feel cold (I put that down to propranalol pills maybe ?). Although my last blood tests came back with some problems with my hormones , the Nurse at the doctors said its perimenopause.KC , I think you touched a nerve there - when you said " when will this ever go away ?".My neuro said I will have this all my life (not what I wanted to hear) but I do wonder will it shorten my life ?We cant find a reason for me having this problem , I have had a mri done and its all normal. I am pleased you have your prayer journal and that it helps you. I have been doing meditation on and off over the past 7 years so maybe I should turn to that again to stop my mind being so out of control. Quote Link to comment Share on other sites More sharing options...
miranda Posted February 1, 2010 Author Report Share Posted February 1, 2010 UPDATE:Doctor phoned me , said he has the letter from the neuro.He told me to come in later today to discuss it. He mentioned me going on Florinef.He said its a steriod ( I didnt know that ) is it ok to be on a steriod all the time ?I asked him why I have this and he said "your just unlucky" and when I asked him about my future having a life of this , he didnt comment . Made me feel worse. Will I die early because of this ?OMG : what a state I am in. When the kids come in , I try to act like everythings fine. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 1, 2010 Report Share Posted February 1, 2010 Mirry,There have been several times when I wondered whether I would "die from this," but the "this" was not POTS; I've had that all my life. I have been told everything from "it's in your head," to brain tumors, addison's disease, a heart defect, vascular defect, pituitary failure and kidney failure. Each time the more extensive testing disproved the theory. My last good nerve has now gotten a callous from me being left on it so long. I take every new diagnosis or test request with a big ol' grain of salt now. Every new theory offered both hope and despair: something horrible, but fixable that would take all this away. You can't go on like this, the worry will eat at what little strength you have left. Give it to whatever higher power you believe in and try to live in the moment, that is all any of truly have anyway. I have a good doctor who knows the possibilities discussed and is prepared for any that might happen. You have a doctor who is taking you seriously. That is HUGE! Try to relax, I know it is hard. Many times it takes trial and error and trial again to find a combination of drugs that improves our quality of life. Keep us posted and keep your feet up, find a distraction if you can.(((((((((((((((((((((((as much support and understanding as will go through cyberspace!))))))))))))))))))) Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 1, 2010 Report Share Posted February 1, 2010 UPDATE:Doctor phoned me , said he has the letter from the neuro.He told me to come in later today to discuss it. He mentioned me going on Florinef.He said its a steriod ( I didnt know that ) is it ok to be on a steriod all the time ?I asked him why I have this and he said "your just unlucky" and when I asked him about my future having a life of this , he didnt comment . Made me feel worse. Will I die early because of this ?OMG : what a state I am in. When the kids come in , I try to act like everythings fine.Florinef is NOT a steroid, but has some steroidal properties. My son's doc at Johns Hopkins says it is quite safe long term. You know to start with a really low dose, even if your doctor prescribes a higher one (1/4 to 1/2 of a 0.1mg.) Supplement salt with food and/or Thermotabs and lots of liquid or the florinef won't have anything to hold in. Lastly, on higher doses, usually over 0.01mg, it's a good idea to supplement potassium as florinef can drain that mineral. Until you settle on a final dose, ask your doc to check your electrolytes (via blood work) to see if your potassium is going down.I have my fingers and toes crossed that this will help. For most of us, dysautonomia disrupts our lives, but doesn't shorten them. Once you find a regimen that works for you, you will find a "new normal." Hugs-Julie Quote Link to comment Share on other sites More sharing options...
miranda Posted February 1, 2010 Author Report Share Posted February 1, 2010 Thanks again - I really do not know where I would be without you all.I have just visited the doctor , she said .....she wants me to take the florinef everyday for the next two weeks, and then I am to come back to see her.Then she said , she doesnt understand why my neurologist has just gone down the road of treating the symptoms.She said my orthostatic Hypotention is a symptom and that we need to find the cause.she is going to refer me to a blood pressure specialist .I cried again . Quote Link to comment Share on other sites More sharing options...
miranda Posted February 1, 2010 Author Report Share Posted February 1, 2010 oh , i have read the medication and its called .....FLUDROCORTISONEis this something different ?I HAVE TO TAKE ONE 100MICROGRAM A DAY.any advise ? Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 1, 2010 Report Share Posted February 1, 2010 oh , i have read the medication and its called .....FLUDROCORTISONEis this something different ?I HAVE TO TAKE ONE 100MICROGRAM A DAY.any advise ?Fludrocortisone is the generic for florinef. That's what my son takes. 100 micrograms = 0.1mg, which is a pretty high starting dose. Most doctors, who specialize in treating patients with autonomic dysfunctions recommend cutting that little tiny pill into 1/4 or 1/2 (once daily in the AM) and slowly increasing your dose until you find one that doesn't raise your BP too high & helps you feel better. You got the right stuff. I have the feeling it's going to be quite helpful for you. Don't forget to take lots of salt & water with it.I didn't even know that there was a "blood pressure specialist." Tell us what you learn from him/her.All the best-Julie Quote Link to comment Share on other sites More sharing options...
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