janineerrn

I get goose bumps too, then reallly cold. When I load up on blankets about 10 minutes late Im so hot I cant get out of the blankets fast enough then I break out into a sweat, then Im cold again and I also get nausea with the cold/hot thing. Janine

My prayers are with you. Hang in there. Janine

Hi, I frequently get paralysis. I hate it. I know its coming when it feels like there are a thousand bees buzzing in my head. I did some research on this and found tht a liquid mag and calcium supplement helps. Remember the nursing school anatomy clases where the calcium and sodium cross over to make a muscle contraction? This is an autonomic function. I also found, with the help of my doc that lexapro for seritonin and wellbutrin for norepi helps (takes a few months and the adjustment to the med is rough, hard to not give up and stop taking them) These antidepressants I am on are not for depression but to help with nerve function. I have been in bed for over 18 hours with the cycle of paralysis and sleep. Then felt really out of it for days. I had a seizure work up and even had several episoded while on the 24 hr eeg and they were not seizures. In my case,I found, during the seizure work up, my pulse pressure narroed quite a bit right before the paralysis set in. The meds helped me greatly but I still get the paralysis bu not as fequently or as long. Hope this helps Janine

Hi, Zicam if I can catch it early enough. Benedryl or Vistaril if sinus congestion is bad. Tesalon pearles if cough hurts. Zinc losenges, exta vit c. tea tree oil in the vaperizor. Lavender tea if it moves to my chest. I have to avoid the guifenesen also which is found in some cold meds and cough meds. Hope you get rid of your cold soon Janine

Hi, Are you my evil twin? . You described exactaly how I started down the road to my diagnosis of pots. I am an RN (my doc says nurses always get the odd disorders). Every test i had was normal except my tilt table which I failed miserabley. Add in a few ER visits for PSVT. (nothing like your co-workers looming around getting ready to code you). If you are my evil twin, the rheumo will send you to neuro who will send you to cardio who will send you to endocrin who will send you to neuro who will send you to cardio who will send you back to your primary doc with a stack of papers and enough meds to kill you and an empty wallet from co pays and rx's. Then your primary doc will look at you and say "I dont know what to do with you" and send you to psych who will send you to neuro who will send you to cardio.......... The good part: I have been octeotide scanned, every inch MRI'd, CT'd, Ultra sound, xrayed, and every blood and urine test imaginable has been done. So i know I dont have cancer, no anyeurisms, no kidneydisease, no diabetes, no normal heart disease... Just POTS...... I hope you find a good doctor who wil listen to you, it may take some doing. Go to all your appointments armed with info on POTS. My only saving grace was a local pediatric cardiologist who is a colleague of Dr Grubb. (thank you Danell)!! My advice, to start, get on the list of others in your area who have POTS and find out who they see in your area that has actually helped. And remember this forum can be a life saver. Peace Janine

Hi All, My shoulder, hip, and knee on my right side always ache. I know a lot of people have joint pain with POTS. IU had xrays done on Thurs and they show bone spurs in both my hips. They didnt xray my knee or shoulder (Im sure they will, how they love to waste time). I was wondering if anyone else has this problem. My sed rates are always normal so its not due to arthritis osteo or rheumatoid. Is this realated to POTS? Im kind of at a loss because this will bring a whole new set of problems. I was told Ishouldnt have surgery because of my bp issues, Im either way low or way high and the stress of surgery could be dangerous. I also need my tonsils out...... UGH. Thanks Janine

Hi, I take both. I started on a low dose of Lexipro and I am up to 10 mgs daily. I also have Klonopin prescribed for 3 times a day but I only take one at night or when I need it. (usually when I feel an "episode coming on". If you go on any med make sure you give it time to work, especially with ssri's. You may feel funny at first or may have to gradually increase your dosage. But give them a fair chance, at lest 6 weeks . Unless you just cant tolerate it. SSRI's help with depression, help with nerve conduction, and from what I have been told can prevent nerve deterioration in combo with other drugs. There were previous posts on both lexapro and klonopin. You may want to read those. Peace Janine

Hi, When I was on the florinef/miodrine combo I had to stop with the high salt diet because florinef stops your kidneys from getting rid of so much sodium. I also had to take lasix every now and then to get rid of fluid. I guess its all just a big experiment and if we get rid of one symptom and have another we just need to choose which ones we can live with. I prefer a little flid retention over a heart rate of 176. Peace Janine

Hi, I love my beta blocker, I cant function with out it. I would love to cut down on the meds I take but I realized that is pretty unrealistic for my condition. Im just glad to have a med that works!!! Peace Janine

Hi, Im back on it again. I couldnt tolorate it at first. Then we just keep experimenting with different combonations of drugs. I sit down with my doc and look at the side efects of different drugs and find the ones I actually want. The miodrine made me feel worse before but now I think the combo of lexapro and wellbutrin (used for their effects on the nervous system, dopamine and seratonin reuptake inhibitors ) with the miodrine is working for now. Everyone responds diferently and all you can do is try different things until you find some combo that works. I noticed that I have 6 month cycles with meds and treatments. I usually have to change things around after about 6 months because I feel bad again. the changing makes me feel worse, then the new combo makes me feel much better for a while. Its really fustrating but hang in there. I know there are many here that are tired of the med thing so, your not alone. Peace Janine

Hi, I forgot when I was on florinef I was prescribed potassium pills. They gave me liquid potassium at first and it was prety gross... It would be nice if there was a tasteless electrolyte supplement. My doc suggested gatorade and gave me samples of electrolyte powder. I remember taking the potassium pills, drinking lots of water, changing to a liquid mineral supplement and eating a lot of olives. I guess the problem is your bound to need a change, I got sick of olives for a while but Im back on them now, lol. With any fluids or food I have, I get really full really fast. And the constant nausea drives me nuts. I think its time to take out the juicer and start experimenting again. Peace Janine

Hi, You need to watch the potassium with Gatorr ade and electrolyte mixes especially with some meds you might be on. I found that Olives, salty cheese, and crackers work well. Adding sodium that way makes me feel more normal. I actually never used salt from a shaker in my life until POTS came along. Yuck!! Peace Janine

Thanks you guys for the kind words and support. Holding a baby just put a different prospective on things. My diagnoses are: POTS, NMH, Hiatal Hernia, Dumping syndrome (digestive), hypertension, hypotension, tachycardia with PSVT, Depression, Generalized Anxiety Disorder, GERD, restless leg syndrome, insomnia.(im sure I forgot some) Lymes was negative, did have a positive urine and blood metanephrine elevation but pheochromocytoma was ruled out with nuclear studies. Getting work up now for Fibromyalgia, chronic fatigue. Meds: Propanalol, Clonadine, Miodrine, Synthroid, Lexapro, Wellbutrin, Clonopin, Valium, Marinol, Nexium, Reglan, phenergan, high salt dit, liquid mineral supplement (really helps), fish oil, aspirin, multi vitamin with xtra b complexes.

Hi, I hope you are all hanging in there. Ive had my share of ups and downs since last time I posted; its been a while. Still fighting with long term disability. You pay for insurance for years in case something happens then you have to fight to get it...... you know the drill. As far as Social Security goes HAAAAAAAAAAA....... I actually have medical insurance now, which is great, they even waved the pre existing clause. So I can afford my meds now. Thank God for little things. I sold my horses, which paid the bills for a while. I couldnt handle the work or ride anymore anyway. Still have the same ol sysptoms plus some new ones. I have intense joint pain, anyone else have that. I also get this shooting pain from my groin to my knee that lasts only a few seconds but brings me to tears. Dont know whats up with that. Im spending a lot more time in bed now. And my memory is scattered. Im still having several times a week, my "Its the big one Im gonna die now"" autonomic storms. I am honestly at the point where the anxiety and the inpending doom I feel doesnt really bother me anymore. i take a couple valium, go to sleep, and if I wake up, I wake up, if not oh well. Sorry to be so gloomy. I have my 5 month old grandson, he just loves rocking. I hold him and he reaches up and plays with my hair. He really has made a big difference in my outlook. I gave up for a while. I dont complain or anything. I still do the best I can around the house but there are some days that it just hurts too much to move. I hope all you guys are coping. I miss you. Glad your hear to listen. Peace All Janine

Hi Everyone, I have come to love olives and parmesean cheese, the real kind you grate yourself. I always crave water, I have always hated salty things, now I crave them every now and then really bad. Hope you feel well. Janine

Welcome back Pooh, Missed you. Hope everything is calming down for you. Hugs Janine

Hi All, Went to psychiatrist today. He agreed to manage all the centrally acting drugs for me so I dont fry my brain (or the 4 other docs prescribing meds). It was sort of the usual 1st time see a doc explain, explain (pray he doesnt think Im menopausal with an anxiety disorder) explain........ But he asked me basically 'Have you ever thought about what your gonna do when you get better' My brain froze, I had no answer, I was in a stupor and it wasnt from POTS. Hmmmmm. Am I going to get better? Now if i was my former self, when my brain actually worked I would have responded with "Do you know someone one something that will make me better" But nooooooooo, I stayed in a stupor. I am spending so much time, energy and money on finding ANYONE to validate my disability in writing and send it to Unum so i dont have to prove every month that Im still sick for a stupid check. (that I am very thankful for). What would i do if i got better? Go back to the ER and work 65 hours a week night shift in the trauma unit. Id finish my masters. Id ride my horse like a bat out of ****. He wrote me a script for valium. I now can add depression and generalized anxiety disorder to my DX kist, WOO HOO! On the brighter side, my daughter in law is due any day now with the nameless baby boy. Her ultra sound measured the baby at 11 lbs 15 oz. We go back tomorrow for another ultrasound. If it confirms the baby is big they are going to induce her. My poor daughter in law, she is miserable, record heat here, a 12 lb baby, hopefully all goes well and we have a healthy baby boy with a name this weekend. Have a good night all. Janine Is Pooh home yet?

Good for you Linda! Youve got guts girl!! I think this may be an amazing opportunity for you. Meet new people with a different perspective with life with a disability. You seem like the type of person that would be an asset to a community like that. Your future new neighbors are fortunate. I hope it all works out. Im sick of people thinking its not real too. Luckily (lol) I have these episodes every now and then were I get pale and my hands and feet turn blue and i sweat and vomit. It has happened in front of doctors, my husband, and my mother. I put their hand to my heart when my heart rate is 176. I did that to my husbnd one time and said"you do the dishes". He his much more understanding now. Im glad your spirits are better now Janine

Hi, When I pass out it usually takes me a day or 2 to recover. I have "seizure" like activity too but its actually a agal response which looks like a seizure. I go right to bed, usually crawl and sleep. Janine

I had been told by 6 doctors that I am menopausal and have a panic disorder. Obiously I dont see them anymore. Janine

Hi Danell, ANA is anti nuclear antibodies, for some reason your body is producing antibodies that attack your own sells, like it would a bacterial infection. It explains a lot of your new changes. Its going to be another series of RULE OUTS because there are many reasons for this happening. I hope they find the reason quickly and can treat it. Mine have always been low. Call me if you need me. Janine

I get that a lot on my right thigh. I also get a burning sensation in my right ear canal. What a strange condition we have and how complicated our bodies are. Have a GREAT vacation and be safe and well. Janine

Thanks for the ideas and support. This is just once vicious circle with tons of hurdles. Was supposed to have the complete Mayo work up, even had it scheduled, then our company changed insurance carriers and NONE of my docs were on the plan. So I found and old friend who is a doc in south carolina and she has been doing all the paperwork for me, my GP. Now that im going on my hubbys policy she isnt covered cause she is out of state and not a specialist. I can barely afford the copays and meds. Yadda yadda. All I want is 1 doc, covered by my insurance to help me. I have so many docs prescribing meds, if i wasnt a nurse Id be in a coma if I took all the meds the gave me like they told me to. One doc to coordinate my care. I dont need to be retested. I have been nuclear scanned, Ct'd with and without contrast, and ultrasound from head to toe. My blood olume is prob low from all the blood work they have done. I have given gallons of 24hr urines. I been on soooo many meds that didnt work. Oh and I was scoped both ends too, (joy) I vagaled out from the prep and wound up in the hospital. I dont want to do it all again because the doc doesnt believe or know about NMH and POTS. I cant believe Im back to the your menopausal and have panic attack look. Oh Well, my daughter in law is in labor, 100% effaced, 2 cm dialated and having contractions every 6-9 min. So we will be off to hospital tonight, went in today for a check, she didnt want to labor in the hospital so we came to my house and walked in the garden and picked squash and beans, and onion and made fried green tomatoes. This is the stuff that keeps me going. Have a good night all. Thanks for listening and the suggestions. Janine

Hi All, Went to cardio 2nd isit with her. She wants to redo all my tests. I have a holter monitor on right now, of course nothing ever happens when Im wearing one, maybe thats the cure) She has gotten no medical records Duke has the only full set and because of new hippa rules they cant send me anything but their actual records. So now I hae to request records from every place I have been, ugh. New doc was kinda angry with me said I have to choose a doctor to manage my care and I shouldnt be doing it myself. She is also the one who said she neer heard of any autonomic problems being so severe. I handed her all the print outs. She didnt take them she just looked at me. I left them with her nurse. I have so many docs prescribing meds that if i took what they gae me and how they told me to take it I would be in a coma right now. I am going to continue to manage my own care so they dont kill me. So fustrating. Good news is I am on my hubbys insurance as of Aug 1st. Got to wait to see what the pre-existing clause is. So still cant find a doc willing to do long term disability papers for me. My short term is approved til 8/1. I have an appt with a psychiatrist on 7/28 hopefully I can get him to extend my std. Onward with the search for a doc who will do my long term, does doc Grubb do it? If so how do I get an appt with him? Must be a long waiting list. Thanks for listening Janine

Thank You for these, I already had some of theese articles printed out (lol). Janine