Newbie--With A Few Questions

[MandyBrook]

Hello Everyone!!!

I am so thankful to have found this website!!! It had been such a blessing these past few weeks to read your stories and find encouragement through your own stories!!!

Let me begin by introducing myself, my name is Mandy, I am 24, married to my wonderful husband, Jeremy, and we have three beautiful children, Josiah(3), Skyler(2), and Maddy(1)!!!!

I have not been formally diagnosed with POTS but am on my way to find some answers. I began having tachycardia during my pregnancy with my youngest son (2008). I would have an episode then it would go away for months at a time. I was prescribed metoprolol 25mg to take as needed and very rarely needed it. After giving birth it seemed as if my tachycardia went away until becoming pregnant with my daughter in 2009. It was the same scenario, a spell of tachycardia, then nothing for weeks or months. The doctors always assuring me this was common with pregnancies as the veins are dilated while pregnant. After delivering my daughter I was having some difficulty breathing and my heart felt very off rhythm so my doctor called for a EKG, CT scan, and chest x-ray, all of which came back normal except for some minor arrythmias. I was told to go home and rest, the stress from having three babies within three babies was what caused it......

The symptoms did subside for some time. The tachycardia began to come back and my heart would race upon standing or after eating. So, I made an appointment with my internist who sent me on to my cardiologist. All the appropriate tests were ran, EKG, ECHO, chest x-ray, nothing out of the ordinary. Very healthy heart, but I still didn't feel "right".

However, I trusted the doctors and just dealt with the symptoms until they got better. I started to notice the summer of 2011 that my body wasn't tolerating heat as well. As soon as I'd go outside I could literally feel the blood begin pooling in my feet and hands. I also started to notice that after I would take a shower or bath I would have to rest and my feet would be very red and swollen for sometime after. And, I also began to have spells of severe dizziness and migraines. I saw my internist during this time and he recommended I begin taking my metoprolol daily. I tried to take the full 25mg but it would drop my BP so low I couldn't function. So, I cut it in half and although it lowered my BP it wasn't enough to cause concern. And, it did seem to help.

I had been feeling pretty good up until a few weeks ago. I had went to get some lunch with my sister and children and afterwards I stood up and was very dizzy, my left arm tingling, and heart racing. This was unlike my tachycardia spells, my heart was racing, 130's, but nowhere near the 190-200's like I experience with my normal tachycardia. Also, I was lightheaded, which I never was with my tachycardia, and my left arm was tingling. So, we headed to the ER. After seven hours in the ER they sent me home saying everything looked good, and I was probably just stressed....

That night after returning home I felt very withdrawn from everyone. It was hard for me to concentrate and everything seemed to overstimulate me. The next morning I was awoken to severe adrenaline surges. They were terrifying!! I had never experienced anything like this! I was told to follow up with my doctor after three days. So, after the three days I made an appointment to see my doctor. Still very fatigued, still lightheaded, and feeling emotionally drained.

My doctor recommended I begin taking my full metoprolol instead of just the half. And, offered an AD or Benzo in the mean time. I declined both. I HATE medicine!!! I'm a very stubborn person and I believe I can do just about anything by myself LOL

That night I did as prescribed and took a whole metoprolol. Within minutes I began having full body tremors. Quite scary. I attributed it to my BP being so low and allowed it to subside then went to sleep. After a few more days of agony, I went back to my doctor who recommended I make an appointment with my cardiologist to wear an event monitor and be rechecked and he also advised I try an AD. So, reluctantly I filled the prescriptions for Zoloft and Klonopin. And, I also began my 21 day event monitor. The first day on the Zoloft was terrible. I am such a happy person and it made me morbid. It was AWFUL!!!! I decided to cut it in half and try again the next night. Again I felt AWFUL!!! During this time I found your wonderful forum and felt like I was reading about my own life! Finally, someone who understands!!!! I also read up on the usage of AD, especially Lexapro, and how they have helped so much! Finally!!! Some encouragement!!!

I immediately called my doctor and asked him to switch me to lexapro!!! I have been on the lexapro 10mg for three days now as well as a klonopin at night. My doctor recommended to take both the first two weeks because those are the hardest weeks. So far I haven't noticed any real improvement, but I haven't gotten any worse either!! I have a LOT of faith an hope that this is going to help alongside my metoprolol!!!

So, my question is what effects did you feel from the lexapro? In what areas/ways did it help? Did it help with the adrenaline surges? Also, how long does a flare normally last for you? And, if anyone else has any other info or tips that would be greatly appreciated!!! Thank you so much for your time!!!!

Mandy

[tinkerbella]

Welcome Mandy ~

I think I'm in the lifer category, some of us have had this for most of our lives, but ran from doc to doc till me finally found a dx. I wish you the very best and I best I can tell you is that I do best starting one med at a time. I'm very sensitive to many meds. One @ a time is a way to see how it is affecting me best ( side effects wise). It is here you will find a wealth of information. Remember we are all a little different and you should run everything by your doctor. I myself can't tolerate any AD and others can. They give me very vivid nightmares, so they are on my DO NOT GIVE LIST!

I hope you will get a tilt table test although my doc always say a monitor is just like a tilt table test. I need to answer the door, but feel free to pm me with any questions at all.

Hugs ~ and I know you're going to love it here!!!!!!

Bellamia ~

[MomtoGiuliana]

Welcome Mandy.

I experience adrenaline surges as well, more so at night when I have a flare up, I know they are terribly uncomfortable. I used Prozac rather than Lexapro, which after adjustment seemed to help greatly. I stopped having these surges and my other symptoms also became much more mild. These days I do not use an SSRI however. I do get flare ups occasionally, but these seem to only last a few days to a week typically.

Hope you are feeling better soon.

[Guest Alex]

Hi Mandy,

welcome to the forum.

I'm glad you found the posts here to be helpful, and if you stick around I'm sure you'll get to appreciate the friendliness, knowledge, helpfulness and support of everyone in this community.

I don't want to scare you, or be negative, but simply tell you about my personal experience with citalopram (almost the same medication as lexapro). In my case the medication actually started a full blown storm of adrenaline surges. While on it my bp and pulse have been allover the place, I've been unable to sleep because of adrenaline surges that would come every couple of minutes - in a nutshell I felt terrible. Luckily all the symptoms subsided and gradually disappeared within 3 days of discontinuing the medication. The "moral" of the story - we all react differently to different medication.

I hope you will find the lexapro helpful as many people taking SSRIs swear by them. I'm also taking clonazepam and I do find it to help - I'm not sure about other effects it might have on me, but at least I get a good night sleep after taking it.

Best wishes and keep in touch.

Alex

[MomtoGiuliana]

I should have added that there is an adjustment period typically for SSRI's. I felt worse for several weeks before feeling better which may be fairly typical. If you can ride it out it could be worth it in the long run. BUT SSRIs also do not work for everyone either...

[MandyBrook]

Thank you all for the warm welcomes and sharing your experiences with me!!!!

MomtoGuiliana- May I ask what symptoms increased upon starting the AD?

Also, is hand tingling normal for POTS? It doesn't seem to happen every day but it had been the past few days. I also get short sharp almost shocking feelings in my chest mostly below my breasts and right over my heart. Is this something commonly seen? I've never had the typical angina pain. So, just curious.

Thank you again!!!!

Mandy

[bellgirl]

Welcome Mandy...all the symptoms you are experiencing, we have all had at one time or another. Don't let the symptoms alarm you....medications can be a good thing...I was always reluctant to take anything, and I was dying before being diagnosed with horrible dizziness, vertigo and insomnia from tachycardia; Mitral Valve Prolapse, Dysautonomia and Sleep Apnea, is what I was diagnosed with as of August 2011. Clonazepam (Klonopin) helps me sleep, Bystolic, my beta blocker decreases my heart rate, and Losartan keeps my high blood pressure under control. Use what works well for you and talk with your doctors about any side effects. You may need to tweak the doses, or find different medication. It took a while for me to find the right beta blocker...Wish you the best. You have found a wonderful site for support from others. It's helped me immensely to be part of the DINET family

[MandyBrook]

Kim--

Thank you so much for such an uplifting welcome!!! And, I am VERY encouraged to have you living SO close to me!!! I live just south of Huntsville It feels good to not feel alone!!!!

[potsyturvy]

Welcome to the forum Mandy! I use Celexa for adrenaline surges. I used to have them so bad, that they would almost nonstop all day and through the night. It took a little over a week for the Celexa to start working, and it was a miserable week, with increased dizziness and adrenaline surges, but now I rarely have an adrenaline surge. I think everyone just reacts different to different medicines. I'm with BellaMia, that you might want to ask about a Tilt Table Test. Glad to have you on the forum, and best wishes!!

[MomtoGiuliana]

MomtoGuiliana- May I ask what symptoms increased upon starting the AD?

It's been 9 yrs now so hard to remember it all, but definitely the adrenaline surges and feelings of weakness/dizziness got worse initially on the SSRI. My doctor (an EP and specialist in autonomic dysfunction) warned me that this was likely and that I should try to push through this adjustment period to see if it would ultimately help. One of the side effects of an SSRI is autonomic dysfunction--crazy that it should be ultimately useful for POTS--but this is considered to be an early side effect that wears off.

Regarding tingling, yes this can be a symptom (at least I have experienced it--I don't know if it is a common POTS symptom) as can chest pain. But these can of course also have other causes, which you probably want to talk to your dr about and rule out.

[abbyw]

Hi Mandy,

Welcome to the forum! I know that everyone here has really helped me.

I also take the non-US equivalent of Lexapro. As I've posted here many times, it has helped me tremendously after the first few weeks of adjusting. But I do want to warn you that my symptoms were not as severe or the same as yours. (I was having lots of dizziness, extreme exercise intolerance, even talking would sometimes make me dizzy, and lots of jitteriness - feeling like I wanted to jump out of my skin. My pulse was going up over 30 points when standing.) When I started the SSRI, my jitteriness got horribly extreme, and I just felt awful all over - nauseous and dizzy and exhausted. It lasted around 2 weeks, and I took half of a benzo here and there just so I could sleep a little. (I am also not so into taking drugs, but the jitteriness was just too much for me - I was shaking my legs around in bed to feel like I was getting out some of the energy.) After 2 weeks, I was able to stop taking the benzo. It took around 6-8 weeks until I really felt better from the SSRI, but now I am much better. Sometimes, I will have a bad day, but most of the time I am functioning.

I also have very vivid dreams and I sometimes wake up with night sweats. I am also often tired around mid-day, but I don't know if that is the POTS or the drug.

I should mention that I am taking 7.5 mg - not considered a theraputic dose. I am quite small - 5'1" and around 105 lbs, when I started the SSRI, I started at 10 and that was WAY too much. Then, I went down to 5 and worked it up to 7.5, which I am happy with. I sometimes wonder if I would do better at 10, but I would rather take the minimum.

If you have any other questions about the Lexapro, feel free to ask. Everyone responds differently, I know that for others here, it wasn't as successful.

I have also been trying to exercise daily to help improve things. I am not able to jog, never was, but I walk briskly. I do think it helps.

Wishing you a complete and speedy recovery!

Abby

[cyndi75rose]

Hi Mandy, Wecome to the forum. I just wanted to share that the hand tingling is very common for me. Some times I get it in just my fingers, sometimes my whole hand, sometimes up my arm. Can be on boths sides too. I also experience it in my feet at times. Nothing ever comes of it and it can last a long time and then go away. I don't know if it is a common symptom but I have it happen a lot.

Cyndi

[MandyBrook]

Thank you all so much for sharing with me!!!

I am so thankful to have found such a wonderful group of people that I can relate to!!

I will keep you guys posted on my journey. I will be wearing the event monitor until March 28th at midnight. I then see my cardiologist March 30th. Hopefully we will have some answers then!!!!

[bellgirl]

You know, Mandy, there are very good doctors at the Autonomic Disorders/Mitral Valve Prolapse Center of Alabama in Birmingham. That is what they specialize in, so I would highly recommend them!! Dr. Phillips is my doctor. I also have a neurologist, Dr. Riser, and Sleep Apnea doctor, Dr. Adams. So I travel to go (my husband drives me), but it is worth it!! You can personal message me, if you like, and I can talk to you more about it

[tinkerbella]

Mandy,

My hand tinging has become a problem ....I noticed that after typing my left arm was tingling and my pinky and ring finger felt asleep. I went to bed thinking I would be OK in the morning and morning came and it was still there. I kept shaking my arm out thinking this would help. NO, it didn't and by a week later I was worried. It was different from the normal tingling.... having been an aerobic teacher, the words in my head kept saying what I used to tell my students, "Listen to your body, It's telling you something." I went to my PC all of this was pre-pots dx and I was sent for a emg of my arm and legs. I soon found out I had something called, "cubital tunnel", a cousin to carpal tunnel syndrome. The doctor was quite alarmed as he also found peripheral neuropathy in my arms, legs, hands, and feet. I was scared silly, as they didn't know what was wrong with me. I had many accidents of breaking my limbs from all this numbness since a child. We then started looking for what was really wrong with me.

I was then sent to have a brace fitted for my arm to wear and if it didn't get better there would be surgery. I don't do surgery well, so I wore the brace all the time. Also the brace was a good visual to my little kiddles that I could not pick them up all the time. Soon after cubital's cousin, Carpal decided to visit. So, when tingling gets concerning get it checked out ~

Take Care,

Bellamia ~