Jump to content

New To Forum


mrsdavidson8605
 Share

Recommended Posts

My name is Rachel and I am new to the forum, but not so new to the whole POTS thing! I was actually just diagnosed with it in October of '07 at the Mayo Clinic in Arizona (Dr. Wissner), but I have been dealing with strange symptoms since about 2005. It started with terrible headaches. I was hospitalized several times. I had dizziness to accompany the headaches. I tried several migraine medications and none helped. I was told I had a "rare form of a migraine".

This continued on but I was able to work 40 + hours a week as a mental health case worker. In September of '06 I got pregnant. I was doing okay until around the second trimester. That is when the palpatations, racing heart beat, and all the other fun symptoms came on. This became constant at that time. I was forced to go to part time work, then eventually quit in April of '07. Again, I was hospitalized SEVERAL times, but they never did anything too serious (Had an MRI which was possibly an aneyurism (sp?) but then they said it wasnt)... They wouldn't touch me bc I was pregnant! OH and yes I also got the "depression" card pulled on me SEVERAL times, like many others with POTS. I suffered through the pregnancy and had a beautiful baby girl in June of '07.

After that, I thought, wow I might get some help now that i'm not pregnant!!!! (so we took every step to make sure that wouldn't happen again for a long time!!!) I started going to a new doctor, who was supposedly wondderful... well I went in about 8 weeks post pardum with a 102 temp, was so weak I could hardly walk, had a positive blood test for an old Ebstine Barr Virus, and later found out that the Dr. and the PA put in my chart that I "didn't look at my baby the whole visit, and was suffering from post partum depression".... Anyway we finally decided just to go to the mayo in October. I got the diagnosis (oh I had a TTT done about 6 weeks post partum and passed out after 14 minutes). I saw Dr. Wissner at the mayo and he diagnosed me with POTS.

I was relieved! finally some answers! not really though. I went through the normal meds for POTS, which is too long to list. Even Beta Blockers. But those just dropped my BP to about 80/60. Dr. Wissner finally said there wasn't much else he could do for me.

Meanwhile, we just happened to come across this website (thank GOD!!!) We printed out the list of "causes" of POTS and took it to my new PCP. We are STILL fighting to have more tests run (they are so reuluctant to do anything!!!!). Long story short, I recently had an abnormal EEG run, so they want to do a 24 hour one, and I had an ultrasound of my left renal vein last week, which showed the vein not getting enough blood flow, so I have to do a CT angiogram tomorrow... possibly nutcracker phenomenon? Anyone have this?

Anyway, I am just searching for answers!!!! My husband and I are going through a VERY rough time right now. I would just like to get my life back. I'm only 27 years old and I feel like i'm 50... I'm sure many can relate... a few questions I have are:

1. Has anyone tried the saline IV's and had success?/ any other alternative things besides the long list of drugs... (anyone else resistant to the drug therapy?)

2. We are looking at going to see Dr. Grubb, but his first available is October of '08. We might go see his PA Beverly, but I am thinking we need to rule out all these other possible causes first? Good or bad idea? Keep in mind that I live in Ks and have already paid out of pocket to travel to the mayo.....

3. We just bought an adjustable bed frame bc I heard that elevating the bed helps? Anyone else tried this?

4. I feel like i'm DROWNING bc I drink so much water and it doesn't help! I was told 2 liters per day, plus 3 salt tablets per day... no relief!!!! Anyone else do this?

I'm so glad I finally got to post on here. Can't wait to hear from you all... It's great to have family, but sometimes you just need others that KNOW EXACTLY what you're going through!

I'll be praying for you. Please pray for me..

Link to comment
Share on other sites

hi rachel,

welcome to the forum! you found a great place to be as there are a lot of people here that will understand you and (although there is a wide variety between all of us) know how you feel! there ae several women here who got pots during or immediately after pregnancy/giving birth. i hope you will find the answers to your questions, meanwhile: enjoy your little one!!!

take care,

corina :)

Link to comment
Share on other sites

Hi Rachel,

Welcome to the forum. In answer to some of your questions:

1- Yes, Many of us are resistant to drug therapy... they make us feel worse many of the times, it takes a long time to find the right combination for each individual... much trial and error so to speak.

2 - Haven't been to Dr. Grubb, so can't say if good idea or not... finding a physician in your area that is familiar with Pots and sympathetic towards it may just be as good if willing to work with you

3 - I sleep with a bed wedge and it does help some

4 - Yup, told to drink lots of water and extra salt... still feel awful most of the time

I also can relate to having a toddler and living with POTS and all the challenges and disappointments that entails... you are not alone :)

Take care and thanks for the prayers... sending another prayer your way -

Tammy

Link to comment
Share on other sites

Hi Rachel--your experience is very very similar to mine. My undiagnosed POTS also got worse in the 2nd trimester. My daughter was born Oct 29 2002, I left work in early Sept. Like you I had no answers until post partum and this was after multiple diagnoses of depression. The good news is that now I work full-time and my symptoms are generally entirely manageable.

IV saline and fluids generally help--I guess it depends on how severe your symptoms are how much relief you get. Most POTS patients are told to increase fluids and salt and you definitely should do that if your doctor prescribed that. When I was very ill, this heped, but did not get me functional.

What worked very well for me was a low dose SSRI. This cn take weeks to provide symptom control and often causes difficult side-effects as your body adjusts (one of the early side effects of an SSRI is autonomic dysfunction!)

Seeing a specialist far away may help with diagnosis, but not care. Ideally you need a local physician--have you seen an electrophysiologist? Generally they are aware of POTS and the various treatments. Treating POTS can be trial and error as not every med is effective or appropriate for every patient.

Take care,

Katherine

Link to comment
Share on other sites

Thanks for the advice. Although, I have tried the SSRI's, some haven't helped and i'm also a little aprehensive about those due to side effects.... I am thinking about trying the IV thing. See if that gives me any boost at all..

Dr. Wissner is an electrophysiologist.. finding a good doctor in Wichita Ks, that knows anything about POTS is like finding a needle in a haystack.. we have an ok pcp right now who is at least willing to run tests......

thanks again!

Hi Rachel--your experience is very very similar to mine. My undiagnosed POTS also got worse in the 2nd trimester. My daughter was born Oct 29 2002, I left work in early Sept. Like you I had no answers until post partum and this was after multiple diagnoses of depression. The good news is that now I work full-time and my symptoms are generally entirely manageable.

IV saline and fluids generally help--I guess it depends on how severe your symptoms are how much relief you get. Most POTS patients are told to increase fluids and salt and you definitely should do that if your doctor prescribed that. When I was very ill, this heped, but did not get me functional.

What worked very well for me was a low dose SSRI. This cn take weeks to provide symptom control and often causes difficult side-effects as your body adjusts (one of the early side effects of an SSRI is autonomic dysfunction!)

Seeing a specialist far away may help with diagnosis, but not care. Ideally you need a local physician--have you seen an electrophysiologist? Generally they are aware of POTS and the various treatments. Treating POTS can be trial and error as not every med is effective or appropriate for every patient.

Take care,

Katherine

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...