Clots, nausea, dizziness, and itchy

I have had 3 separate episodes of deep vien thrombosis and two episodes of pulmonary embolisms. My first DVT was in 2006, and through the years a few scars were found from other dvts. I was put on low dose birth control pills and three weeks later was in the ER and ended up hospitalized because I had three large pulmonary embolisms. I had quit smoking a couple years before and I worked out a couple hours a day, 6 days a week. I seen a hematologist after my first episode of PES and he could not find a reason I got clots and even said I could get off coumadin which I felt wasn’t right, but hey he is a doctor so he knows best, right? Wrong exactly one year after getting off my coumadin I was back in the ER with 3 PES and one large DVT. So I will be on coumadin for life. 2 months later I started having issues with vertigo, nausea, and heat intolerance. I quit working and I started noticing my hands getting bright red and burning in the afternoon through the night, but I shrugged it off and felt silly mentioning it to my doctor. So 4 months later in April I decided to have my doctor look at my arms and hands because they were constantly bright red by then and the pain was getting bad and I was having issues with feeling itchy everywhere and most the time I can’t scratch the itch no matter where I scratch.That was the last time I saw my doctor because she had quit, so for the next 9 months I saw float doctors who were just prescribing hydroxyzine and promethazine which wasn’t helping with hell fire in my arms. Thankfully a new doctor was hired and she immediately knew it was something to do with my nerves and put me on gabapentin and the first night I didn’t have a flare, I actually cried from relief! But it came right back! So I now take 1500 mg of gabapentin a day and 60 mg of cymbalta XL and the combination did help the constant pain but I still flare all the time like when I my blood starts pumping. Thank goodness for AC and fans. My doctor has been awesome at trying to find answers and a couple months ago she said she thought it was EM, she sent a referral out for rheumatology and she thought it wouldn’t hurt to go see my dermatologist while I waited. I went and saw my dermatologist who gave me the official diagnosis of EM! I have had this dermatologist for years for my acne and I just didn’t think she was the right doctor for my issue because I knew my nerves we’re involved, and she even asked why didn’t you come and see me as soon as this happened to you. She first prescribed lidocaine patches which I couldn’t get to stick on me and when I taped one on I didn’t get much relief so she called in s script for ketamine and amitriptyline cream that I am waiting on.
I am curious if anyone else has had similar issues with clots, nausea, itching, and dizziness? I am a 34 female who has also had a ton of kidney stones since I was 14.
I have had blood work this past year and nothing jumped out, my red blood cells were slightly high, and some other cells that I can’t remember but they are just over the normal range, I am going in to get new blood work this week. My dermatologist thought I might have polycythemia Vera but my hematocrit was fine. I am still trying to figure this site out because I will get emails in my Gmail when someone responds but I don’t see their reply in the actual topic, so I go back to my email and respond and that shows up in the topic. I am confused!

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I started with itching about 15 years ago. Then 5 years ago during surgery for an unexplained GI pain and nausea, I threw 2 clots, and am on coumadin. Looks like we are following each other with symptoms…My dermatologist diagnosed me as well. You might consider a bone marrow or a genetic test to see if you have the EM gene.

Is your em secondary? I saw my doctor today because for the past two weeks I have been having trouble walking because I am so dizzy, and I am having headaches along with a feeling that I am deep underwater like all this pressure is on my head. I also have been having this electric feeling go through my head, arms, and backs when I am up walking around. Well she thinks my em is idiopathic and I strongly disagree because too many other things started with my em, and I flare really bad when I am going through severe dizzy spells. I almost feel like I might not wake up because my head feels so screwy, but I am still here so I am trying not to get too anxious. She prescribed amitriptyline for sleep and to help my headaches. She also wants me to get back on a CPAP machine. She thinks I am not getting good sleep and that’s causing my other issues. I hope she’s right but I really think I have something else. I have trouble talking too, and I have always been really talkative so it’s frustrating when I can’t recall simple words or I have trouble saying words.

If EM is connected with small dysfunctional blood vessels then it makes sense that the vessels are not just in the hands and feet, but are in other parts of the body (the entire body) as sell. A number of years ago I was diagnosed with microvessel disease of the heart. As a doc said to me recently, "they measure the vessels of the heart, but don’t see a reason to measure the other vessels.’ Thus, it might be possible that the illness is causing spasms in the brain, making you dizzy.

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That is very interesting, and I think you are definitely right. Do you ever feel like you have em flare in your eyes or mouth? My left eye gets a hot needle feeling, it’s not painful but really uncomfortable and unnerving. I have trouble with this site for some reason, I don’t know when I am responding to someone privately or on the topic.

You can tell if it’s private as it will say it’s a message if it doesn’t say message then it’s on topic. Hope that helps.

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Thanks, I think it’s because I can respond from my Gmail account and I don’t know if I am personally responding or replying on topic. So I have been coming to the site.

I am fascinated by your symptoms Melinda. I have been hospitalised 3 times this year with suspected vertigo (dizziness and pressure in my head, eyes and ears). When I was tested for vertigo it was negative so I was sent for a sleep study. Results - I don’t have a sleep disorder but the pain is waking me every 2 minutes on average at night. I find just before I get the dizziness and pressure in my head, I tend to get a burning/stabbing sensation in my eyes. The other thing that has concerned me for quite sometime is my speech. I am finding it more difficult to think of words I want to use while I am mid-sentence.
I was diagnosed in January with Primary Idopathic EM with Small Fibre Neuropathy and Restless Leg Syndrome. I’m waiting to get my last test results next week to see if we can link the EM back to my pubescent epilepsy.

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Wow, that sounds like exactly what is going on with me. I feel like a hot needle is being stabbed into my eye, it’s not as painful as it is annoying. I saw my PCP last week and I am trying to get her to understand that my dizziness is not normal and I think I have secondary erythroymelaglia, but she thinks it’s primary. She blames my meds for the dizziness but I wasn’t on these meds when it started. I get scared I will fall over sometimes because I get so dizzy and the pressure builds in my head like I dove deep underwater. My PCP wants my dermatologist to handle my em, and maybe I can convince her to look into my symptoms. My PCP also referred me to sleep medicine and I see them in November. I was diagnosed with mild sleep apnea about 4-5 years ago, when I moved I somehow lost my CPAP machine. So I need another one and I will see if these symptoms will get better, but I don’t have much faith in that. I feel something else is wrong, I feel like I have electricity zapping through me, especially when I am up moving around and it doesn’t get bad until late afternoon and I can’t find anything that would make it start up. My sleep is a mess, I sleep in intervals and I know that’s not good but I am starting to have nightmares where I am burning in fires and I wake up and I feel like I am burning because of the em. If you find anything out let me know and I will do the same. I am sorry you are going through this but it’s nice knowing I am not the only person

Also I went to a cardiologist last year and her medical assistant had me lay down, sit, and stand up while he took my blood pressure. My blood pressure was really low while lying down, normal while sitting, and high while standing. She said I had postural hypertension but I don’t see it in my medical summary for the clinic so maybe it’s not a big deal. But she wanted me to have a bubble study because I have some symptoms that might be a hole in the heart. When I went to have it done the nurse didn’t think she could get a IV in me, so she called for the iv team but they were backed up. I did a echocardiogram normal and stress test. Nothing significant was found but the tech thought it was odd that my pulse went from 160 to 95 in less than a minute, she said she had never seen that. I have had an abnormal t wave on my ekg for the last 6 years, and my last one showed other abnormalities but nobody said anything so I don’t know what to think. I get overwhelmed by all the specialists my PCP has referred me to that I forget to schedule appointments. I am going to go back and see the cardiologist, just to be safe.

Funny you say that about your pulse. My heart rate spikes to 160 whenever I stand too long because of the pain. Then as soon as I sit, it is back down to 86. I have the same problem as you withthe low blood pressure, although it doesn’t go high when I stand. It just ranges from really low to normal. I had a specialist tell me the other day that the pain was all in my head, I almost stabbed her in the eye with her pen.
I believe that my dizziness comes from lack of sleep which is from the pain of the EM. I think my body and mind is just so fatigued that all these new symptoms are starting to come out.
I’m in Australia so things run a little differently here when it comes to medical professionals. My GP (General Practitioner) is amazing, she is the only reason I have a diagnoses and am able to trial different treatmemts. The first neurologist she sent me to said I had Peripheral Neuropathy and just to keep upping my pain killers until I got relief. My GP wasn’t satisfied, so she refered me onto a second neurologist who was extremely thorough and did all the tests to discover the EM. There is a huge lack of resources here for rare diseases what is it like there? I assume you are in America somewhere?! I noticed when I was in Vegas last year that there appears to be a lot of support or treatment centres for general neuropathies. There are none here.