gdomaracki

Im so glad Im not the only one who experienced this and thats its nothing serious. It only lasted for a few seconds. I had taken my bp about an hr before bc I felt weird and my stats were normal. Jeez, pots can be just plain weird sometimes. Im thinking the fluctuations are from coming off the florinef.. Yes, Im so glad I can work a few hours a day and try to be sitting as much as I can. Unfor my work is thinking about letting me go because Ive been real sick with flares since Dec. I understand them needing someone more stable but working their has really help me thru the depression from this condition and given me something to look forward to.

So, if youve been reading my posts you can see Im in the middle of a pots flare. My blood pressure had been creeping up so Ive been off the florinef for the past five days. Ive had alot of ups and downs with bp and hr, along with symptoms but my numbers havent been too bad. Now today after work, I felt a little dizzy so I laid down for a little. I was playing a game on my phone when all of a sudden these sparks starting falling in front of me. I quicklu sat up cause it scared me and began to worry. Of course then I went into a full blown attack or panic attack idk but my bp spiked to 145/102 but my heart rate only went to 105bpm. I got all shaky and felt like I was hyperventilating, cold clammy for about 30 mins. Slowly then after that i started to calm down and my numbers have come down to 130/85 hr 77. Any ideas what all this was? Are these symptoms of hyperadrenic pots? Im most concerned about the eye flashes as this has never happened before. Maybe its bc im off my florinef ? Any suggests would be wonderful! God Bless, Nicole

I sent one too!

Thank you all for your kind words and suggestions. Day three without the florinef, just 5mg of midodrine and 10 of inderal, my bp is good laying down and sitting around 120/80 to 115/70 heart rate under 100 but now when I stand my bp is dropping 95/68 was the lowest with a heart rate of 130. Its like everything that was happening has completely switched, Id like to continue to stay off the florinef I just have to figure out how to get my bp to stay up when I stand. Any suggestions? .. I notice too that I get hot and sweaty after Im up for a bit then once I law down things slow back down. Im hoping my body will adjust and its just gonna take time to stabilze. Hopefully quick cuz Ive missed so much work that they told me I might get let go if I keep missing more from being sick :,( Sorry to vent, I just have no one that understands what Im going through and my frustration. Its amazing how one day our bodies do one thing and then the next the complete opposite.

Okay so Ive postes on here the past few months about my blood pressure gettinf high randomly and I had cut back to 1/4 tab of florinef before Christmas. Then after broncitis and prednisone, my body crashed and I had to go up to half a tablet again. Everything was good till another month went by and wham my bp is up and Im feeling lousy. So the er dox tells me to stop taking the florinef and midodrine, that my body is able to make blood pressure on ita own now. So I cut the midodrine to 5 and the florinef to 1/4 tablet again. Numbers were real good for another month and then came my period and wham there sky high, so I quit taking the midodrine and florinef (1/4) tablet two days ago. Since then my blood pressure hasnt dropped at all and now my heart rate is up as well. Im having constant adrenal surges, high bp on sitting and standing, heart rate is all over the place, Im cold then sweaty, feels like my heart is going to pop out of my chest. I cant calm down or stop crying, I feel like my body is out of control. Is it possible that I need to go back up on the florinef so that my autonomic nervous system settles down? Can the florinef actually stabilize blood pressure? Ahhh Idk what to do and neither do the docs, Im feeling worse and considering just taking the florinef to see if I feel better. Please somebody help me!!

Hi all! Hope everyone is well and keeping the nasty flu germs away. So, Ive been having problems with fluctuating blood pressure and heart rate. After coming off prednisone I had to increase my florinef to half tablet cause my bp wasnt staying up at all. That was a few weeks ago, and I felt better for a bit and then my bp starting running high. (heart rate was really good though) So on Saturday I went back down to 1/4 tablet of florinef. First day was good, second was good too, but now Im at the third day and my heart rate is back up while my blood pressure is normal now. I dont know what to do at this point and any input would be wonderful. Should I go back up on the florinef or is my body just adjusting to a lower dose?? I also had a question about low blood sugar, mine has been well controlled until the prednisone. Now I get these spells where it drops low for no reason. Even after Ive eaten a hour before and I only eat whole grains, low sugar, etc. Anyone else get this? Does this mean Im getting diabetes? (my blood sugar is never high) Sorry to ramble, my mind is running in circles trying to figite out this mess. -Nicole

Ive been seeing Dr Goodkin in Media Pa who I absolutely loved but now my insurance doesnt want to pay for me to go bc its out of network (only 1 hr away) and because he has a signed contract w medical assistance, I cant pay to go there either. Its totally not fair!! Anyway, im looking for someone in the southern part of Pa that has a good idea about the complications of dysautonomia and would be accepting new patients. Thank you for your help!!

Yes I would like to know what treatments are helping you. What is mcad and how do you know if you have it?

Anything that would help lessen this feeling??

I'm having hard time sitting and an even horrible time when I stand. This is completely different from two weeks ago when I was fine and worked and everything. It's feels as if my body is made of lead and it's getting heavier the longer I'm up. I also have pressure in my chest and my heart rate increases significantly. Does anyone else experience this? It almost hurts to walk because my legs feel so heavy, like gravity is sucking me towards the floor.

Yeah, I've often thought of going off the medications but I too know when I take the beta blocker late how high my heart rate really is. My doctor said the same thing to me, try tiltrating up and down to see if I feel better. I feel like a lab rat sometimes LOL I'm going to try taking a little more florinef and see what happens. Wish me luck!

I am having the same issue. I've been taking propranolol and now all of a sudden it isn't keeping my heart rate down. My cardiologist too told me to increase the medication but I'm not seeing any differences either. What beta blocker are you taking? And what dosage? I'm trying to get an idea of what works for others, even though I know that we are all very different. I hope that you get your heart rate down too! I'm wondering if my blood pressure is dropping lower and that's why I'm getting the high heart rate. So confusing!!

So, we are playing with my medications to see if we can get me to feel better. My numbers are all over the place, with my heart rate jumping extremely high when I stand. I've been taking 5mg midodrine, 10mg propranolol, half tab of florinef. (.01 i think) So far I've tried 7.5 midodrine with 10 propranolol and 5mg midodrine with 12.5 propranolol. My heart rates definitely higher with less midodrine and more beta blocker. Since my blood pressure has gotten high, I'm wary about increasing the florinef but feel that it might stabilize things and last longer. I used to take alot more florinef but had cut back this year. I'm trying to stick with the meds I'm already on so I don't get any new side effects. Any suggestions would be great as you all know this is a guessing game. I'm nervous to increase the florinef back up but it seems like the logical solution.

24 yr old female, caucasian, german & polish decent

I currently have the Omron HEM 712c and after being at the hospital, Im not sure its reading accurately. It has been reading low but at the hospital it was high. Its super important that I have precise readings because Im changing medicine due to my recent flare up. What type of monitor do you have? Which ones have ypu had trouble with?

So, I ended up in the er again. When i try sitting or standing Im weak, dizzy, tachy, and it feels like my body is being pulled downward. (weird i know) My blood pressure is all over the place 148/100 95 bpm laying down, 138/110 120 bpm standing. After the iv fluids I felt much better, 120/69 80 bpm laying down, 130/80 95 bpm standing. Ive been stable with my readings for so long, I dont understand whats going on and what meds need changed. Im currently on 7.5 mg midodrine, half tab of florinef, 10mg of propranolol, 100 mg of zoloft. Im going to try to speak with my heart doc today but wanted to ask your opinions as well. Since the fluids helped does that suggest I neef more florinef? Will that make my blood pressure too high? Or will it stabilize things? Thank you for any suggestions! Im really worried about all this. :/

Okay, so let me catch everyone up on the past few weeks... I got bronchitis which then led to broncular asthma, which I was put on antibiotic, prednisone (40mg for 5 days, then 20mg for 5 days, then every other day), nebulizer and an inhaler. After taking these medications for a few days my body adjusted and I felt pretty good on them. Then came the tapering of the prednisone. On Thursday and Friday I took 20 mg, and around 4am Saturday morning had a horrible autonomic crash. I woke up and my blood pressure was 160/110 and my heart rate was over 140. I couldn't get my body to calm down so I ended up getting rushed to the hospital but of course they couldn't do anything and the rush eventually subsided. They gave me fluids to help with my orthostatic hypotension that they noticed was pretty extreme after doing orthostatic vitals on me. Since then, I have been having low blood pressure (even when sitting) and my heart rate has been up in order to compensate. My heart doctor has told me to increase my midodrine, but I'm still having low blood pressure symptoms ex: dizzyness, lightheaded, shaky, tachy, etc... I don't understand what is going on and why nothing is seeming to help. I was only on the prednisone for a short time, could I really be experiencing withdrawal symptoms? Are they going to go away? My POTS wasn't actually that bad, until I started coming off the steriod now my body is acting like it did when I first got sick four years ago. Ahhhh!!! Any input or suggestions would be great because the doctors around here don't seem to know what to do or how to fix this. I keep insisting that it has to do with the steriods but nobody seems to be listening. I'm supposed to begin taking 20 mg every other day for the next five days and then be completely done with the steriod.. I'm afraid of what is going to happen. :/

So ive been battling with severe bronchitis for two weeks and now ive developed broncular asthma. The er doc put me on prednisone and im pretty nervous about it seeing as there are serious ans side effects from it. What are your ecperiences from it? Ive only taken 20 mg once and Im wondering if I should not take anymore? Will it cause withdrawal symptoms if you only take it once?

For about a week and a half now, I have been dealing with a nasty bought of bronchitis. The past few days have been absolutely horrible and I'm becoming desperate for relief. I've been using a vaporizer, cough drops, lots of fluids, and I just started doxycycline (antibiotic). I'm still wheezing horribly and coughing up green mucus. I'm going to call into the doctor's office tomorrow for an inhaler, but I wanted to see if anyone else has had any experience with this and what helped them. I hate to have to try an inhaler or maybe a nebulizer treatment because it will more than likely make my heart race but I really am having trouble breathing. Is there any less side effects with a nebulizer treatment? Thank you for all your help. Hope everyone has a nice Thanksgiving!!

I've been on florinef 0.1mg once a day for over 4 years now. About 2 weeks ago I started feeling sick and having slot of pressure in my chest. After going to the er I found out that my blood pressure is very high which isn't normal. So in order to get it down Dr Goodkin is taking me off my florinef. Of course I'm really nervous about the potential side effects and how getting this medication out of my system is going to make me feel. If you've have gone through it, what did you experience and anything that helps your body adjust?

So, I just recieved a message from Dr. Goodkin that he can no longer see me because the practice he works for won't let him treat patients with postural orthostatic tachycardia syndrome. They told him that it is too risky as far as medical malpractice lawsuits go. Did anyone else who sees him get this message?? I don't even know what I'm going to do now. Dr. Goodkin was the ONLY person who gave me any kind of hope as far as my condition goes. He was caring, considerate, and compassionate about treating those with this debilitating illness and he made me feel like I wasn't alone. He had such a passion for what he does. I just can't believe it. I've been doing horrible lately and I'm not sure who now I can go see in my area. Do any of you know of a good POTS doctor near PA?? Ahh, I'm so sorry for my venting it has just been a rough past few months & this news could not have come at a worse time.

I have had POTS for over 3 years now. Last September I started seeing a new doctor because my symptoms had become debilitating. This is when my new POTS doctor discovered that I was acutely anemic, which we figured out was due to heavy periods over the years. I tried taking iron supplements but this was horrible on my stomach and gave me internal hemmroids. So last month my POTS doctor reccomended that I see a hemotologist for possible iron injections. I obviously need to have this condition treated because my ferratin is so low that it cannot get better on its own. So my question is how will this effect my POTS? Will this make my HR/BP irratic? Has anyone else had to be treated with this? Did it have an interaction with the medication you were already on? Any comments would help greatly & help calm my nerves. I'm always worried when taking new things. Thank you & God bless!!

I'm sure many of you are trying to survive the cold and flu season. Nothings worse than having one of these lovely infections along with your postural orthostatic tachycardia syndrome lol. I went to the doctor after being sick for a week and they put me on Azithromycin for bronchitis. My question is, has anyone experienced any side effects from this drug? I know in the real world people aren't so sensitive to new chemicals in there body, but I'm sure many of you are like me. And I was wondering what to expect. My current daily medications include midodrine, florinef, zoloft, propranolol, and prilosec. Any insight would be great appreciated! Hope everyone is doing well. -Nicole

So as you know I'm in the process of trying to get my heart rate to come down some and to keep these bad adrenal dumps from happening. The mestinon was untolerable so now we are going to try 10 mg of Inderal 2x a day. Yesterday I started by taking 5mg in the afternoon and did feel a slower heart rate and more relaxed on this. But then an hour after going to bed I woke up with the worst adrenal dump ever, and couldnt get my heart rate down for nearly 30 minutes. I was wondering how many of you have tried this medication and what kind of results you have experienced. What is the best time of day to take this medication? I'm also on midodrine and I'm wondering if it is okay to take both these medications at the same time? Any kind of insight about this medication would be great. Thank you & God bless!

After going to see Dr. Gookin last week and having problems with lots of tachycardia especially when I'm trying to sleep, he decided that he wanted me to try Mestinon. So, yesterday morning I took 30mg and about 20 minutes after taking it I had what seemed to be an adrenic attack where I got all hot and clammy, racing heart, anxiety, shaking, weak and then at the end of it became extremely cold. Heres my question, I'm not sure if the medication made me feel this way or if it was just my POTS flaring up and I was wondering what effects anyone else has had on this medication. What are your experiences?? Of course now I am terrified to try this medication again but I know that if I don't I will never be sure. And I really need to start taking something to get my heart rate to come down, so I'm not always tachy and tired. Ugg, I just wish there was a more definate way to treat our symptoms rather than putting random harsh chemical compounds into our body and just waiting to see what kind of nasty effects it will have on us. :/