New Pots And Fibro Diagnosis From Pregnancy

[castronovo112587]

Hello all I am new to this forum and newly diagnosed as well. I am so glad I found this site as the last 5 months have been extremely difficult for me. I am 5 months post partum with my second child(they are seven years apart) and upon giving birth to my daughter my health has been a disaster ever since. It all started about 2 days post partum. I suddenly developed a terrible headache and felt like someone was standing on my chest. My blood pressure was taken and it was 181/132( I always had perfect blood pressure prior to all of this). So I had to go back to the hospital and get magnesium sulfate to lower my blood pressure and was put on propranolol to help as my blood pressure kept shooting up over the next week. I also had a never ending migraine for about 6 weeks and they tried to put me on topamax for it which I immediately stopped taking after a couple of days because it made me a completely different person. So my blood kept fluctuating to either sky high or too low 90/50 and all the while I was getting numerous other symptoms: palpitations, elevated heart rate, chronic pain everywhere, severe diarrhea every day, shortness of breath, constant dizziness and lightheaded ness, shooting chest pains, severe anxiety, even my pupils weren't dialating properly and all of this would be on a daily basis and I had no energy to do anything at all. I went to the emergency room numerous times as well as various doctors. Now here is where my story is unique, I was diagnosed with Carcinoid cancer in 2008 when they found a 3cm tumor in my appendix after appendectomy and it had started to spread onto the wall of the colon so I had an additional surgery where they took out the right half if my colon and 28 lymphnodes as well(and all was clear). Since then my tests for the cancer had been normal. So shoot to now when I seen my cancer doctor in July she strongly believed my cancer was back as carcinoid syndrome causes all the same symptoms I have been having as well. I had numerous tests done, pet scan picked up on activity near colon so I had colonoscopy and endoscopy done which was comletely normal and small bowel series was normal and bloodwork and urine specific to this cancer came back normal. Follow up ct scan showed noting out of ordinary but a homogeneous density in liver and spleen which was worrisome to me as years ago I was having lots of abdominal pain and the ct scans kept showing a "benign homogenous growth" in appendix and it turned out to be cancer. I made an appointment with Dr. Strosberg at Moffit Cancer Center in Tampa who specializes in Carcinoid Cancer only as it is a rare cancer and my cancer doctor was convinced it was back even thought my tests seemed ok because this cancer is extremely slow growing and it rakes years for tutors to get sizable. I went to Moffit in September with all of my scans and test results and described all of my symptoms over the last 3 months. He told me that he did not believe that my cancer was back but that it sounded like I had pots syndrome and that the way to diagnose it was a tilt table test. Thinking back now I had remembered in one if my hospital stays that my blood pressure would drop significantly when standing and after seeing the dr at moffit I started monitoring my heart rate sitting and standing and my heart rate would sometimes be in the 50s upon sitting down and as soon as I stand up it would go up to about 110 within 10 seconds. I am glad to finally know what is going on as I has been **** these last 5 months. All my tests from ekgs, echocardiogram, stress test and numerous blood panels have come back normal. Thyroid function and inflammation tests all normal. The only thing that I do suddenly have is allergies to everything! I am allergic to wheat, soy, milk, eggs and peanuts. I am also allergic to saw grass, ragweed, dogs, dustmites, and mold. I heard allergies is a common thing with dysautonomia. I also have excercise intolerance and was not able to work again up until about 2 weeks ago where I finally felt somewhat better and almost like myself again and then I caught this nasty cold and now my symptoms are back full force again. I have a lot more dizziness and severe headaches again as well as the itchy skin and swallowing difficulties and my energy is way down again although I had never fully recovered to my old self. What is most upsetting for me is my quality of life has greatly diminished. Before and during three quarters of my pregnancy I was an extremely active person with so much energy. I was able to work on my feet at a physical job for ten hours straight and then go out dancing all night with my friends and now just on Halloween taking my kids trick or treating I was winded and dizzy just walking to a few houses. It's also frustrating that almost every doctor knows nothing about this and no one I talk to as far as friends and family have either ( I hadn't before this) I feel like they don't understand just how terrible I am feeling. So I have a few questions. Is there anyone else who developed this due to pregnancy or child birth? Does anyone's symptoms get way worse around that time of the month? Mine do and now that I was just sick my blood pressure keeps dropping randomly again and all of the symptoms are worse again. I am trying to find a doctor near me while knows about this as I do not have a treatment plan yet. I am not on any medicines right now aside from amoxicillin because my cold turned into a bad sinus infection and I swear the Amox is making me worse as well. My blood pressure had finally stabilized at 2 months post partum( I might have had some sort if preeclampsia) now if it does fluctuate it goes too low. Any advice and tips would be greatly appreciated. Thank you guys I know this is a really long post.

[castronovo112587]

I am 25 years old by the way

[KareBear]

Welcome, and sorry to hear you are going thru all this. Pregnancy/childbirth can bring on POTS. If you haven't searched this entire website yet you may want to go out of the forum and look at the areas that explains possible causes of POTS and the "what helps" section. All of us here have been down a long road like you are on so can very much relate. There is also a secrion on the website where you can find Dr's that specialize in POTS in your area. And of course places like the Mayo clinic are big shots with treating dysautonomias (but personally all they really did for me was confirm my diagnosis).

I hope you can find a doc that can help you soon, it must be tough with a young baby and all this mess. Hang in there, there is always a chance it can get better again. After checking out the other areas of the website maybe you can find some things that will help. If not, there is many helpful people here that can lead you in the right direction possibly. Take care!

[castronovo112587]

Thank you. Yes I have looked over the site and for the time being I am drinking tons of water everyday and eating more salt. I haven't fainted but I've come close to it. I am going to buy an excercise bike as well as I've read that excercise training can help pots tremendously

[MomtoGiuliana]

Welcome to the forum. I developed significant POTS during late pregnancy, which got worse post partum. I also had sudden high bp which resolved after several months. It can be hard to tease apart everything that is happening during pregnancy and post partum unfortunately.

Lots of fluid and extra salt was also helpful to me.

I also took an SSRI for awhile which seemed to help re-stabilize my ANS but I have never been quite the same since. ALTHOUGH I am pretty well, most days.

[castronovo112587]

Thank you it is reassuring to hear that many people do improve with time.

[Noonoo]

My story is similar- I was in perfect health postpartum when pots struck very suddenly and severely in March when my only daughter was just 12 weeks. My mum and sister were diagnosed with pots and then EDS when I was 38 weeks pregnant so I knew the genetics weren't looking good.

I empathise and you list of symptoms were all present for me too but many have settled. Chronic diarrhoea has subsided as have the night sweats. I deal with dizziness when standing by shuffling and rocking with the pram. It's frightening to feel so ill with a little one but I'm learning to adapt to our situation and I'm starting to feel a little stronger. It's such a shock to the system- I was very active like you and you feel such a grief for the way life was and the impact on partner/family. When people don't get it, it's very isolating- that's where online support is fantastic. I've never posted my story- been in denial....but reading advice from others has truly helped and comforted me.

I haven't recovered to be well enough to work or function normally and it's been a challenging start to motherhood but I'm about to try midodrine and I take a beta blocker as my HR was reaching 180. Currently I feel unwell 24/7 but try to walk everyday and its helping to keep my muscles strong.

I've read all I could find about pregnancy induced pots and it seems that there's a good prognosis for recovery for those without another underlying cause such as EDS.

If you are breast feeding, slow and prolonged weaning is advised to avoid sudden hormonal changes. I've managed this without difficulty over the last few months. Nuun electrolyte drinks also make me feel better at times through the day so might be worth a try to help hold sodium.

Do you have family support? I've been very ill and have had to swallow my pride and ask for help. The silver lining is a wonderful ten month old who gets me through with smiles alone!

I'm really thinking of you and hoping you see improvements soon xx

[castronovo112587]

I am so glad I found this website! Unfortunately I'm not breast feeding as I had to stop because they were doing so much testing with radiation and dyes that get in breast milk and had me on medicine I couldn't breast feed with. I do have family support which is really great, I am so thankful for that. Have you tried any kind of exercise program? I am going to be getting a recumbent bike. I read that excerise training dramatically helps pots. I thinking of you as well

[jbechtold00]

I just got diagnosed with POTS. I had a baby a month ago and my symptoms really went wild after my csection. Looking back I had some symptoms end of pregnancy too. I am doing fluids/salt but still not improving. Any other recommendations? I am breastfeeding but am concerned about the high salt intake?

[MomtoGiuliana]

I would talk to the pediatrician if you are concerned about any meds while breastfeeding (or extra salt). Or to a high risk ob/gyn.

I did not improve until I started a betablocker, SSRI and stopped breastfeeding. I was sad to stop at 4 months, but I had to improve my health. Breastfeeding does take a lot out of you--including fluids obviously!

Hope you start to feel a lot better soon.

[castronovo112587]

I was on a beta blocker shortly after the birth due to really high blood pressure and severe headaches. It was propranolol and this was way before I knew what was going on and the beta blocker made my symptoms way worse, I had a lot harder of a time breathing and would wake up numerous times in the middle of the night with an adrenaline rush in my chest and catching my breath. I never had palpitations in my life until I was put on this beta blocker about 2 and a half weeks post partum, that's when my palpitations and all of my other crazy symptoms started. Before that it was just the extremely high blood pressure and headaches. I am wondering if the propranolol played a role in me getting the pots syndrome or making it worse.

[looneymom]

Hi Rosey,

Sorry to hear about your illness. When you said you caught a cold again and went down again, this caught my attention. You might want to be seen by a true board certified adult immunologist. If your immune system is out of whack, it can cause many problems. My son is diagnosed with POTS. However, his body has not responded well to POTS medications. When he gets sick with an infection, it takes his body down more. He has had some immune testing done by an adult immunologist. The testing showed some problems, so we are in the process of getting my son to a pediatric immunologist. Our state does not have a board certified pediatric immunologist, so we are having to go out of state for more testing. I have learned through our cardiologist that POTS can be immune related but we still have to figure out where the specific problem is. My son is also being checked for PAN/PANDAS. Many of his symptoms fit this diagnosis also. If you are curious to know about PANDAS, it has been known to cause problems in adults. If you had POTS symptoms as a teenager, you might want to look at the post; PANDAS in Adults. Might be of some help to you. Hope you start feeling better soon and can find a doctor to help treat your medical condition. If you cannot find the PANDAS post and want to read; just let me know and I can bump it up to the first page.

Rachel

[castronovo112587]

Thank you Looneymom. to be honest I am not sure if I had this as a teenager and didnt' even know it. I have always gotten sick easily and constantly catch different infections and also have had a lot of gastrointestional issues since a teen as well as flushing here and there. However I always had excellent energy and was able to be on the go nonstop and stand all day for hours and go out dancing in heels for hours after. People even used to remark at how much energy I had when I'd dance nonstop for 3 hours straight and go "wow I wish I had your energy!" So I'm not really sure if I was slowly developing Pots and it became full blown after this pregnancy. My first time giving birth went fine with no problems. However, I did find out I had cancer two years later and had 3 different surgeries before becoming pregnant again. In high school I got mono and was out of school for a month and after that is when it seemed like all my health problems started as far as getting sick easily and frequent upper respiratory and yeast infections. However, I have had an irritable bowel for years. I have been tested for many things these last 5 months including lupus, RA and a couple of other autoimmune diseases which all came out fine. I am hoping this isn't due to my cancer being back. Carcinoid syndrome has MANY similarites in symptoms as Pots and it is a very hard cancer to detect because it is very slow growing so I guess I will see as time tells. For now they haven't picked up on anymore cancer and my bloodwork and urine markers for that cancer are fine. I will look into an immunologist. It's frustrating because I am losing my insurance at the end of the month. I should qualify for medicaid as my finances has changed drastically since all of this but as we all know medicaid has not a lot of doctors to choose from. I am interested in getting Mast Cell testing as I do get itchy skin and have a bunch of sudden new allergies.

[castronovo112587]

jbechtold00 I now realize I was having symptoms towards the end of my pregnancy as well. As my first pregnancy was different. This time around I was getting really flushed and sweaty randomly towards the end and having slight brain fog here and there but nothing like how it is now. The high salt most likely shouldn't be a problem so long as you aren't getting hypertension as well and do not have any other underlying heart issues as salt can make them way worse (such as congestive heart failure) it would be a good idea to get a full cardiac work up before adding tons of salt to your diet.