It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS) - Page 15

mngirl · 05-24-2005, 12:56 AM

I am actually afraid to even say it...things are actually going VERY well. My dr. put me on a few new meds last week and they are doing wonders!

I started taking Midodrine for my bad dizziness that I was having after I was up and walking around for 4-5 minutes. I have been taking the meds only in the morning (normally you take it 3 times a day, but not less than 4 hours before bedtime, since it could cause your blood pressure to shoot up by just going to bed!). It is working, but I can start to tell that is wearing off in the early evening. So today we add a dose in the early afternoon. I am hoping that that totally helps. I have had VERY few dizzy spells at all and have had no issue with being up and around - it has been GREAT!!!!!

Then I was getting AWFUL chest pains, having trouble breathing. I was taking Bextra (which was recalled, but was working great) but then couldn't get anymore, so we switched to Celebrex but that I had an allergic reaction to and it put me in the ER (I couldn't breathe and my throat started to close), so the final option was Mobic. After day 2 - no chest pain, no trouble breathing! The only bad side effect is a burning scalp - which I can put up with since it is only really bad about an hour after taking it and it lasts for a few hours. So today we also upped that to include an evening dose, since I am starting to feel a little bit creeping in in the evening.

I am also having Lidocaine treatments for my right elbow and my head. They also have been going well...no problems during treatment (which I was having TONS before - I started to even have kidney problems). But it has completly taken care of the burning behind my arm and I have noticed that it also has started working on the majorly painful spot within the inside of my elbow. The only problem is that once we stop treatment the pain comes back. So I think that we are going to talk about an infusion pump that will constantly pump in Lidocaine! Maybe that will completely make it go away. Right now I am going in twice a week for 2-6 a piece to get pumped full of Lidocaine. The only bad thing is that it is not working AT ALL for my head. I am still getting major headaches and the muscles in my neck are totally cramping constantly. I am not sure what to do about that anymore. They are telling me that they think Botox injections would work, but my insurance refuses to pay for it. And I cannot afford a $1000 per treatment. So I am not sure what to do about my head.

Here is the only bad part, last night my 2 year old son threw a toy at me and broke my nose (this will be the 3rd time it has broke in 5 years!). My older son broke it when he was 9 months old (he had a temper tantrum and threw his head forward and crushed my nose). Then my 2 year old broke it when he as 1 - he also was having a tantrum. Then last night. My 2 year old did't like something my husband said, so he threw the toy - and it smacked me right between the eyes and POP!, pain and I couldn't see. Then came the purple under the eyes and the bridge of my nose started to swell. This morning it was really red and the spots under my eyes were bruised - but at least make-up helped to cover it up. Unfortunately, my daily dosage of methadone was doing NOTHING this morning and it got worse while trying to work at my computer. My eyes were straining too hard. So when I talked with my doc I asked if I could take anything on top of the methadone. So he told me that I could add toradol on top of that. At least that has taken the edge off the pain. It still hurts to the touch, but at least it is not the throbbing pain I have had all day.

So...things are finally go well. The only thing is that things are taking a while to heal. I have tons of IV sites from the past month or so that are refusing to heal and go away. I am very concerned about my nose not fixing itself. I am guess that this is due to the Addison's. I have upped my daily dosage a little to try to help.

Also, the past 2 months I have started to get lumps in my breasts. The 1sy one I found got me into the doc right away. They checked it out and said that it was just a cyst. Well, now I have found another on the other side, and it is MUCH bigger. I asked my internal med doc (not my family doc who I went to for the 1st one and whom I am supposed to see this next month just as a followup) about it all. And he said that the Nadolol that I have been taking can tend to cause these type of things. I have never had anything like this in all my 32 years and then I get 2 within 2 months? I am just concerned that this new one is something. So, I will see when I go in for my follow-up, even though my internal med doc thinks it is nothing.

So...Things seem to be shaping up...I hate to even say that for things may just start to fall apart and I will end up back at the beginning.

Thanks for checking in on me. I am still alive. I have started a new business, so I have been awfully busy getting that going. I finally have a littel energy to think about something else

Amazing what a few drugs can do, eh?

I hope everyone has a good evening! I will update soon!

~Lisa

ms dimples · 05-26-2005, 12:09 PM

Hi Everyone..sorry its been a little bit. I got hospitalized for over a week again. Symptoms got increasingly worse after starting the floricef and midodrine so they sent me to another teaching regional hospital for some answers. What a waste of time that was. Basically got poked stuck and proded and was sent home with no more answers than what i went in with feeling worse than when i started. They tested for everything under the sun, ignored my low cortisol levels because i was negative when it came to the stimulation test for addison's. Took me off all my meds which made everything alot worse. The vertigo, headaches, nausea,vomitting and was constipated for 7 days before they gave me an enema and sent me home, nice eh. They insisted the vertigo and headaches were migraines sent in a neurologist who agreed with me they were not but they ignored that. Started me on partial anti seizure meds and migraine meds which did nothing of course.

They never consulted Endo and doubled my dose of florinef and midodrine and sent me home, got very ill at my parent's home yesterday afternoon, luckily had a follow up appt at my cardiologist office yesterday with the NP. She nearly flipped when she found out they totally stopped the meds and then doubled the midodrine which she said was way to high of a dose for me. Gave me more anwsers to my questions like it will takes weeks for the meds to work and i will have more bad HOURS then good hours at this point days don't count. Gave me scripts for Alavert for the verttigo may or may not help, zofran for the vomitting and lots of fiber, protein, salt and fluids in my diet will help and forget trying to work for at least the next 2 months minimum.

I'm glag your brother is improving so much goody, thats awesome. Lisa keep your chin up i know all about the bruises its unreal my arms look gross. Was never like this before. I hope your nose heals well and it will take time for the meds to wrk it will not happen over night hour by hour not day by day.

JEN

goody2shuz · 05-26-2005, 12:38 PM

Wow...Jen, you have had some time of it. I agree that the meds do take some time to take effect. I would definitely try what they perscribe for at least 2 weeks to a month and make adjustments from there. My brother is finding that a betablocker for the blood pressure (catapres) and an antiseizure med for the tremors and headaches is working well. I would try that combo for a while....it did take him a good 3 weeks to feel better at least in terms of having some type of normalcy in his life again. And that was after almost a month in the hospital trying to figure things out and then back in for complications. Please know that there is a light at the end of the tunnel but that you are going to have to find the right doctors to get you there. Don't stop until you find one. My sister in law is a very take charge person, thank God, and she wouldn't stop until they got to the bottom of it. She told the doctors that my brother was still young 43, and couldn't live like that. And they listened. You & your husband need to do the same until you find a treatment that is going to work. You are so young, Jen, and shouldn't settle for anything less than a life that you can somewhat have normalcy. Please remember that. Give these meds a chance.....and yes, they shouldn't be taking you off them so quickly......some you need to be weaned off of. The doctor's you should be seeing are a good cardiologist and neurologist. They should work as a team. Find one or the other that you trust & have them call in the other that you need to follow you as well. That's what I would advise after you try this regimen for a few weeks. If you are not any better you need to go out & insist that they do something to get to the bottom of this. I honestly think you have a sympathetetic nervous system defect.....something rare like my brother that needs a good patient open minded doctor to treat. Don't let these doctor's intimidate you into accepting this quality of living...there is something they can do to make it better & you shouldn't stop until you find the doctor who will make it happen. In the meantime...please know that you are in my thoughts & prayers & that I am here to listen. (((((HUGS))))) ~ Goody

mngirl · 05-29-2005, 03:24 AM

I know that I shouldn't have made any "Things are going great" posts the other day...because don't you know it, Wednesday things started heading backwards. I had a Lidocaine infusion on Tuesday, which went just fine...but then on Wednesday I started to get an awful, awful headache...things slowly just started to get worse.

On Thursday, I went in and had my new lump checked, which he said was a little big, PLUS he found another! (that night I even found another one!) He said that he thinks that it is just another cyst, but to watch it. If it increases in size AT ALL, I need to get my butt in and have another mammogram and ultrasound. If it doesn't change, but is still there in 3 mo (for a follow-up exam), then they are going to do the tests too. Hopefully it goes away. My concern is that the new one I found is up in the armpit area - which I hadn't checked before and neither did the doc. I am just going to watch it and see what happens.

Anyway...I go to another dr appt for my arm Thurs afternoon...the good thing is that I get to up my hours from 6 to 7 a day at work, the bad things is that my headache was getting so bad I could hardly hold my head up, my eye was watering AND I was to the point of throwing up. Then the dizzy spells came back FULL FORCE! I tried some additional pain meds for my headache - didn't help at all.

Friday the dizzy spells were awful. I almost fell in the parking lot and almost fell down the stairs at work. My headache was still awful. I had to go to another infusion on Friday...My doc came in to talk with me since I was telling the nurse how bad the past few days had been. He is just at a loss at this point. I am literally seeing him 3 times a week right now because of all of this. We thought we finally had the right mix of meds because I was feeling so good. My arm is going well, but everything else just seemed to take a turn for the worse. We were talking about the headaches...he felt the back of my neck and back, he couldn't believe how rock hard it was. So, after my infusion he wanted me come to his office for some trigger point injections. We think that going back to the chiropractor is a good thing , so I think that I am heading back there next week. As for the dizzy spells, he wanted to see how this weekend went before we decided anything. Oh...and it sounds like I could have to have the infusions 2 times a week for the next 6 months to a year! He is hoping that they may end sooner, but since I was sick one week and the pain came back immensely, he doesn't think it will any sooner. At least the infusions ARE helping though...one thing down.

I had my infusions - everything went well, although I slept through half of it. After the infusion I went to his office for the injections. Well. while sitting there I just about ended up on the floor - luckily I caught myself on the chair before that happened. He came in and asked how I was feeling since the infusion. I told him about the major spell I just had. He said, "I could have picked you up if I had too"...So I got up on the table to have him do the injections. He came and sat behind me on the edge. He stuck the first one in and MAN did it HURT (it normally only stings at first and quickly goes away). Then he was going to do the next one and I told him and I needed to move over on the table or else I was going to pass out and end up on the floor yet again. He grabbed me and told me he had a hold of me, that he wouldn't let me fall off. LOL. Then he injected me 3 more times. After the last one I couldn't breathe..I told him no more. He was going to do one in my neck to try to calm the muscles down, but there was no way I was going to handle it. But we decided to stop taking the Lamictal. One drug off my schedule. The last time I tried stopping it, the headaches were way worse. So, we'll see what happens here.

So, today (Saturday) the dizzy spells have been VERY BAD. I am having a lot of issues standing up and walking too far. I almost passed out about 10 times in the store today. I am having a little hard time seeing out of my right eye, and the pressure in the back of my head is incredible. I am having these weird breathing feelings again too.

I just don't get it!!! I have done NOTHING different to set this off like this...I am going back in for another infusion on Tues and we are going to talk about how the weekend went. This just makes NO SENSE!!!!

I think that I am going to go crazy...Just when you think you are getting ahead, you go two steps backwards. I has just been the feeling the best I had in 2 years...I thought FINALLY...argghhh!!!!

Jen -
Try to keep your head up. As you can see, just because they think that they know what you have, doesn't mean that they can even fix it. I hope that you can find someone though that will listen to you. Please keep posting here and maybe we can help you find some answers.

Goody2Shuz-
How is your brother doing? I keep thinking of him each time I am talking with my docs about all this crap. I hope he is getting better.

Anyway...I hope you all have a good weekend and enjoy the holiday!

I'll update next week and let you know what we have decided to do.!

Lisa

ms dimples · 06-02-2005, 11:47 AM

Well i can honestly say i have now passed out for the first time in my life. I had a really bad day Tuesday and was sleeping on the couch (thought for a short nap) which ended up being 3 hours! When i woke i took time to sit up then stand up and i didn't feel "right" wham bam everything went black and when i opened my eyes i was on the couch again..thank goodness soft landing. From there just got worse vomitting (my husband is probably getting jealous of the toilet since i spend more intimate time with it lately). The dizzy spells were horrible just kept me in bed or would of been on my hands and knees crawling to get where i wanted to go.

My husband and i were trying for a second child when all this came to a hed, so went to my GYN yesterday for some information and input, Well, well he strictly forbid pregnancy right now (no duh!) until he gets more info and we get a better handle (i hope) on this.

Today is a new day having dizzy spells already and waiting to see the ENDO, hopefully soon going to call again. The medication has its good moments and its not so good moments that it helps, wears off fast.

As far as my job my boss is very understanding right now. I have a very physically demanding job so i was told i can't go back to work until this medicine starts working all the way or i get better.

Lisa hang in there they may have to up your dose of medicine the midodrine and floricef do help but your body adjust quickly to them and they start to wear off. At least for me thats what i'm finding.

Goody i'm so glad your brother is back to work, thats great i wish him well

You are both in my thoughts and prayers...

Jen