Hi! New To Pots And Not Getting Help So Far. Have Follow Up On Friday

[krystalsmmns]

Hi All,

Sorry for the long post. I have been going through a nightmare for the last 5 years and I'm just know starting to get answers to my issues.

I started complaining about 2010 about swollen partiod glands, fullness in my ears, chronic neck and back pain and headaches of every kind (Aural, Helmet, Ice cream and pressure). I was tested for mono and lymes as well as a basic work up and everything was normal. I was referred to an ent that within 5 minutes diagnosed me with TMJ and told me to eat soft foods. Then I started complaining about shortness of breath, eye pressure pain, unrelieved headaches and chronically fatigued. More blood work-normal, chest x-ray-normal, eye exam-showed convoluted blood vessels, which was not normal for someone my age and often seen in elderly. I asked to try an inhaler, but it didn't do anything. I eventually gave up on trying to figure out what was going on and struggled through my life of going to school full time, three custody battles and an out of control teenager. I had quite a few stressful events that caused me to start having anxiety that in turned made me sicker. So then my issues got got labeled anxiety and depression. I tried several medications that blunted me, but never relieved the feeling of fatigue and intenseness that I had.

About 2 years ago I started having extreme fatigue, brainfog, couldn't engage in physical activity and dizzy spells, but I didn't go to the doctor because I was so overwhelmed with life. I had days I was so sick and did everything I could do to look human. About a year ago I started having collapses after about taking 10 steps. I went to the doctor. She did a blood pressure orthostatic test, but without the heart rate monitoring. She referred me to a nureo. Nureo was 4 months out. So nureo took my history, doc came in and in 5 minutes determined all my issues were from a car accident I had when I was 18. Mind you I am 38 now. He ordered an MRI which I assumed was for the near syncope, since he didn't address that. So I get a call that my insurance wouldn't cover the MRI. In the meantime I was trying out baclofen, diclofenac, and zonsiomade.

So take a step back. I graduated Sept 2014 with Cum Laude Distinction. I had to complete my internship over two semesters because I got fired from the first one, do to my explainable health issues. That cause me a great deal of shame and embarrassment. My boss at my second internship was very cool and laid back, and let me do my thing. I still struggled. My cognitive function was gone by noon, strange intense feeling, my eyes were feeling like they were going to bulge out of my head, terrible headaches, couldn't stand the florescent lights, always feeling low grade fever but no temp, swollen feet and just feeling like death. I got another job right after but they ended up closing their doors after two months, but it was the easiest peasiest job you could think of with all the freedom in the world and I still suffered everyday with the same symptoms. At this point I knew something was terribly wrong with me and I wasn't fit to work.

Back to nureo, so I started all their meds along with singulair, busporon and something else. I was taking 7 meds, 4 times a day and I felt like a freak. I was having all my symptoms come and go, still near syncoping, ligtheadness, blah, blah and my symptoms were worse than ever. I thought the medications were causing worsening side effects. On good days I would put in 15-20 applications then on a bad week I would pray my phone wouldn't ring, because I was so sick. I had one interview that I had a near syncope episode in the parking lot and still continued in. The whole time during the interview I wondered if they could tell I was sick and I felt like I was lying about my ability to perform the job. Sure I was educated and probably over qualified, but I was unpredictably sick.

I lived with these feelings in silence. My fiance couldn't understand what was wrong with me and I started to get really resentful. He called me lazy and said things like I didn't know you planned on me supporting you. He would come home and slam pots around in the kitchen and mock me while he threw together some slop. I would jump out of bed with anxiety when he would pull up and try not to look like I was in bed all day. I became very depressed and anxious. I had so much pressure to get a job. Then I got very angry. My fiance became uglier with his words, I was getting sicker and I told him he had 30 days to get out. Then I has a few glasses of wine one night along with about 3 baclofen and posted some very ambigous and pycho sounding things on FB. Anyone that read them would have though I was mad. I woke up the next day and panicked. I would actually call it a psychotic break and I called my doctor and begged them to see me, that I needed a xanax. It lasted for for 4 days, my doc couldn't see me until that Monday. It took everything I had to not check into a psych ward. So then my doc wanted to diagnose me with bi polar and I said no. This is the first time I've had this. I'm never impulsive and carefully think everything through. Anyways she started me on Effexor and Abilify. I gave up on myself. After awhile I was blunted and I felt like I went through the final stage of grief of acceptance that I was sick and going to be sick forever. I deleted my Facebook account, I quite talking to my friends, I quit looking for a job and I quit trying to figure out why I was sick.

So, I had non-sick days and sick days. Then it got to the point that I couldn't take a shower. All I could do was stand there for 2 minutes and I had to get out. I couldn't groom myself, I was becoming completely disabled.

One day when this lasted for 3 days, I drug myself to the urgent care center because I didn't want to go to my doc and say I needed to adjust my meds. They did basic blood work, nothing showed. They were about to discharge me and I said hey, I've been having this for a long time and my docs are giving me no answers, I was just hoping for something to show while I was having bad symptoms. So they decided to do the othostatic test. It showed my heart rate go from 74 to 147 upon standing. They told me I may have a condition called pots pot it will have to be diagnosed my a cardiologist. I went home, looked it up and couldn't believe my eyes. It was everything I was experiencing. The primary causes matched quite a bit of possibilities too.

With this new info, I brought to my doc. She referred me to a cardiologist. That was scheduled for two weeks away. In that time I had a whirlwind of emotions. I was excited to get something measurable evidence and coordinating symptoms, I was relieved that all my failures were not my fault, I was relieved to prove that I'm not lazy and I am really sick. But, my fiance was still ignoring me. He didn't want to hear any of it or what pots is and why its making me sick. I was angry again and questioned my relationship. I called his parents and told them how he was behaving which caused more problems. I said **** with him and I was seriously ready to move on without him The Friday before my appointment, I got caught up on the phone for a large part of the day and i was sickly. I had an internal tremor. I was on the phone and I all of a sudden developed a new symptom of an electric feeling above my right eye that shot down to my tail bone. It happened over and over again. My friend told me to go to the hospital. On top of this I had the newest symptom of LPR, nausea and vomiting for about 6 months. When I arrived, I couldn't walk and I was beginning to panic when I tried to explain what was going on, I was shaky from freezing and my voice was shaky. They said I looked dehydrated, my urine was concentrated, but all my labs showed normal. I admittedly was not drinking enough fluids that day, but that is not typical. I'm always feeling thristy and dehydrated no matter how much I drink.They discharged me without investigating electric feeling and diagnosed me with dehydration and panic attack. The feeling continued and on Sunday night The vision in the same eye went dark and my eyelid wouldn't open, I freaked again and went to the hospital but just mentioned the electric feeling and my eyelid closing. I stayed over night, got MRI and CAT scan that were normal. I left with information about Panic attacks.

So, the next day was my cardio apt and like an idiot I mentioned hospital visit, I was still having anxiety and had a sustained heart rate of 120 during that visit. I only spoke with her for 5 minutes. She ordered TTT, 48 HR and ECG.

I think the HM only picked up 24 hours, but I know it should have picked up some high spikes. I had readings on my own monitor of 156 just after closing the trunk of my car. The 2nd 24 hours I was much sicker than the 1st. The day of my preop for the TTT I was not feeling so bad and it reflected on my own personal wrist monitor. I asked if it would be a wasted test if I wasn't sick that day. They assured me it wouldn't be a wasted test. The next 2 days I was really sick with rate all day of 60-70ish laying to 130-150ish standing. TTT day I wasn't so sick, but from my observation my resting heart rate was 64 and went to 114 on tilt. I didn't experience any symptoms other than mild tightness across my shoulders and neck. When they injected the proponal the only thing I could focus on was the fact that my heart was pounding and extreme shortness of breath. I felt sort of out of it, but never expressed anything because of the overwhelming pounding and shortness of breath. I felt fine after the test. I waited for her to come tell me the results. "Your TTT was fine, you did have spikes in your heart rate, but I think it's something your doing...either dehydration or psychological." Wait! What? Did she just accuse me of making myself sick? Does she think this all just started? She then proceeded to tell me we can talk more about at my follow up, which was a month later! 5 minute initial consult, 5 minute explanation of test. I said, well this puts me back to square one, where do we go from her. Her response was we can do a 30 day holter monitor. So I have to wait a month, to wait 3 weeks, to wear a HM for a month to wait for a follow up, to get answers and search for more answers and get proper treatment.

So I went home thinking about this and how does she even get off saying this without asking me. I urinated 3x waiting for the test, had an IV drip. When I got home, I had some lunch and a glass of cranberry juice and within 30 minutes my heart rate went for 74-133.

In the meantime I feel like my sanity is questioned, other specialist are questioning me when I mention POTS and don't want to hear it. I'm reading monitors daily and falling to the floor. I have decent days and it seems that it 115 is the magic number that I start to get noticeable symptoms. 120ish is bothersome, 130ish and higher forget about it. When I fall out or have to sit down immediately, it's 140-160ish. 164 is my highest recorded.

Now I actually do not feel my heart racing or apprehension. I feel shortness of breath, tightening and weakening of my neck, back and chest muscles, weakness in my hips and limbs. I have all the other symptoms including blood pooling in my feet and hands, which she never even examined my limbs.

So, I'm actually here to get support and advice on how to deal with Doctors, particularly my upcoming appointment. I'm actually waiting to ask my cardiologist to refer me to someone else. Any ideas on how to prepare for my appointment on Friday? I actually believe she has all the information needed to make the diagnosis. Why wouldn't a TTT with a 50 pt increase be sufficient? What questions should I ask. Thank you in advanced. I feel like I'm being thrown under the mental health bus. 5 years ago I was very physically active, even organized event online and had an active, healthy lifestyle, Not a single script in my medicine cabinet.

[Katybug]

I'm very sick tonight but you're not alone. Will write more tomorrow when this presyncopal episode is over.

[bamboozlem]

Hi,

Sounds like POTs to me.

You are definitely not alone. My journey has also been harrowing and continues to be so.

While I generally know the range of my symptoms, it's is impossible to predict what my functionality will be from day to day, actually, hour to hour. Once I learned that this would continue without reprieve, I basically had a breakdown. I do not know what job I could possibly hold down. In my previous job almost all my energy was devoted to keeping up a facade of normalcy.

After being diagnosed with EDS, I travelled across the country to get a TTT and POTs diagnosis, which happened last year. I still haven't found any typical POTs medications that are truly helpful yet. Basically in a no man's land in terms of the healthcare system here.

My only defense has been to come to appointments armed with information.

Bringing in quotes from relevant articles that are cited properly. Presenting the literature as simply as possible, and making it readable within a couple minutes.

And going elsewhere when you are met with indifference, ignorance, etc.

Wishing you the best on Friday.

[kellygirl]

Glad you are here and you are in the right place. I have been struggling with symptoms for over 10 years and it was always chalked up to anxiety. Several of my docs even told me to ignore 99% of what I was feeling, because my mind was feeding me garbage. My symptoms ranged from splitting migraines, absolutely zero appetite, extreme nausea, feeling alterations in breathing pattern, dizziness, excessive sweating, blurred vision, extreme fatigue and heart palpitations (I do have SVT). Docs just threw prescription meds at me for the various symptoms and told me as long as I was breathing and conscious I was ok, so to go about my daily activities. I was finally just diagnosed in July of this year.

Battling the symptoms is a daily struggle, and some days are better than others. I live for the good days, and just treat myself with extra care on the not so good days. POTS is teaching me to be patient with myself, to take care of my body in ways that I have never have before and to nurture myself even though it is incredibly frustrating.

[krystalsmmns]

Thank you all. I have to leave, but when I get home later, I would like to respond to each of you. I am glad I finally joined. I have so many feelings inside. It's such a lonely illness to live with and for surely confused me to the point of losing my sanity. I'll probably start another post about my TTT results, my cardiologist interpretation and how to deal with tomorrow's apt. Thanks again. I feel your struggles. <3

[MomtoGiuliana]

Glad you found DINET. So sorry for all you have been through. You will unfortunately find many here also who went months to years with no diagnosis, and questions about their mental health instead. It certainly sounds like POTS or something similar from your description.

I hope your doctor interprets your TTT accurately and you can start trying some treatments. It can take some time to find the best treatment too.

There is a physician list here, of doctors w expertise in dysautonomia if you need to look for a specialist:

http://www.dinet.org/index.php/physician-list

[krystalsmmns]

Thank you all. I hope tomorrow works out well. I'm a little apprehensive. I will update tomorrow. Mine comes day by day, hour by hour too. All day I was reading 130s 140s then tonight I'm 74 laying 101 standing. Of course that can change any moment. That's the most confusing thing. When I'm not sick, I feel like a fraud, even though it doesn't last. I can't wrap my mind around why it comes and goes.

[krystalsmmns]

One of the questions I'm going to ask is if she would have diagnosed me if she didn't suspect dehydration or psychosomatic. And if my blood work reflected dehydration. I peed 3x waiting for the test and they used an IV drip. If her answer is yes, she's fired. I'm also going to ask how many pots patients has she had, why she didn't observe obvious circulation issues in my hands and legs. This lady really wasn't serious. I hate that doctors have become so numb that the miss that what's just another patient to them is very important and personal to the patient. Most seem to have lost empathy.

[bamboozlem]

Hiyas,

Maybe a good line of inquiry - either tomorrow or when you eventually get to see someone experienced with POTS - might involve checking your supine and standing norepinephrine levels.

Do you know if this was done during your tilt?

Mine was elevated - hyperadrenergic. It seems me that this has a great deal to do with why I experience life so "intensely" at times.

[krystalsmmns]

I'm pretty sure they did not do blood draws. From what I've read, it doesn't seem that I have the hyperadrenic type. My blood pressure seems to remain stable and has always been on the low side. 100/60 +- 10 ml. Every time I've had my blood pressure taken, it was always questioned if it's always low and that it's considered normal if it's a baseline. I'm having symptoms again this morning. 68 supine 131 standing. After reading about peoples symptoms, I wondered if the hyperadrenic types are the ones that feel thier heart pounding. I don't feel my heart racing. I feel tightness and short of breath. After showers, I feel my heart pounding in my stomach.

[krystalsmmns]

I've gotten lower pb readings like 80/40 something and some high readings like 120/90, but I can't figure the best way to hold the wrist monitor standing, so I haven't paid them much attention because the sensor tells me my arm is not in correct position. I have 3 hr devices that are all consistent and two that measure bp that are not. One wrist, one cuff and just hr monitor. Thank you for your reply! We shall see what happens next.

[krystalsmmns]

My apt was cancelled due to surgery. Smh

[Katybug]

Hi. Well, others have expressed my sentiments well regarding your journey. I know it's hard and frustrating but don't give up. I went through over 30 doctors (I stopped counting at 32) before I found the team of docs I currently work with. They are all super specialized specialists, so they get it because they work with people with these rare conditions all day long. But, most docs haven't even heard of POTS, or EDS, or MCAS.

One thing that stuck out to me in your information is that you said you've had chronically swollen parotids. Have you had a truly complete immunology work up? All Ig levels with subtypes, a vaccine challenge, etc.. That might be another avenue to consider.

Take care,

Katie

[krystalsmmns]

Hi Katie,

I tested slightly positive 1.3 for ssb and I'm waiting on a referral to rhumi. The one they referred me to didnt take my insurance. I found one that does, so waiting on my pcp to send out new one.

Interestingly, while researching I came across EDS and the Brighton scale. I score 7 out of 9. I dont have the knee elbow flexability. I knew I was flexible, but never considered it related to health problems. All my joints constantly need popping. My neck needs it like every 30 minutes and at least 6 vertebras are involved.

I had an apt with an allergist, because Im sensitive to everything and even went to urgent care twice in the last year for systemic allergic hives. I nested negative for everything on their skin scratch test. So, I mentioned Pots and MCA and he scoffed at me and first said I'm not a cardiologist, you're talking to the wrong person. I said, no you're misunderstanding me, pots is associated with MCA, is that your area or to I need to ask a pots specialist? He said MCA is rare, I've only had one patient with it. I said, well what are the symptoms of it? He said anaphylaxis. I said, well I don't have that, does it always cause anaphylaxis? He didn't really answer me. I mentioned that I always felt allergic and thought thats what was going on with me. I mentioned that an intergrative nutritionist did an arm scratch on me and suggested I had high hystamine levels. I showed him my mottled arms and lightly scratched, waited for the wide deep, red line to show. He literally rolled his eyes, gave me no explanation, but he gave me blood test for tryptase and leukocytes. I asked him if there was a best time to take these. He said it doesn't matter. He did in the middle of the apt. have me do a physical and psychiatric evaluation. The scale was never, sometimes and always. A lot of the physical questions were parallel with the psychosomatic, ie. Do you ever get dizzy? Do you feel tired? Then some questions, do you ever worry? Duh. Doesn't everyone. I didn't realize what he was doing. Why wasn't this given in original paperwork? He told me I scored high and he's writing it up in my evaluation for my doctor. I was furious! Did you not realize xanxax is on my list of meds, did you not hear that effexor makes me vomit violently? Do you think my doc is unaware of my anxiety issues? Did I sign something giving you the right to discuss this with pip? Needless to say, I left there feeling defeated. So now I'm crazy for mentioning pots, because I don't have an official diagnosis. I know I have it.

I have my son here today and I'm having a bad morning so far. Heart rate 64 laying, 137 standing. I really want to do something fun. I had to send him to his dads a month ago, before school started, because I had an episode so bad, I could get out of bed for days without feeling dizzy.

I'm hesitant to bring it up to my rhumi, because of this experience with the allergist/ immunolist.

[Katybug]

I strongly encourage you to seek out doctors who are specialists in POTS, EDS, and MCAS. These are considered rare diseases and most doctors do not know about them, and, many others know just enough about them to rule them out without a proper understanding the diagnostic criteria.

For good information on EDS, www.ednf.org is a great site.

Here is a paper on MCAS. It's long and complicated because MCAS is very complicated. Anaphylaxis is one but far from the only symptom of MCAS. If you want the quick overview of the symptoms and the diagnostic process, click on the "Figures" in the paper.

http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

Here is a link to our physicians list so you can try to find the dysautonomia specialist closest to you:

http://dinet.org/index.php/physician-list?view=physicians

If you tell me what part of the country you are in, I would be able to tell you if I know of EDS and MCAS specialists in your general area.

Many POTS, EDS, and/or MCAS patients do end up having to travel to some degree for treatment by doctors in these specialties. Because these syndromes are rare, there is a limited number of doctor's who are truly educated on them and how they interact with each other.

[bamboozlem]

Hiyas,

I've got a very low resting blood pressure (90/60 average) and heart rate (45-55) as well.

Based on my norepinephrine levels after 5 minutes of standing, the doctor labelled it "borderline hyperadrenergic". I don't really know what that means, as I think norepinephrine raises for most people with POTs when upright.

I thought it might help steer me in a direction for treatment, but no luck so far.

[bamboozlem]

Hi Katie,

Did you have elevated serum tryptase levels?

I was able to convince a GP to order the blood test for that, but it came back incredibly low, not high.

I'm not sure with any mast cell issues apply to me or not - based on a photo of flushing on my chest, the POTs doc did recommend my GP refer me to an allergist .

[Katybug]

Hi. No, my tryptase levels have been measured several times but they have never been caught in an elevated state. The paper I posted will explain how hard it is to catch the elevated tryptase. This doesn't mean I don't have MCAS.

The other thing I forgot to mention...take a picture of everything you can, every rash, every flush, every swelling. Document, document, document. Just a heads up, many allergist are not very educated on MCAS. You might strike it lucky but don't be surprised if the average neighborhood allergist doesn't get it.

[krystalsmmns]

Thanks so much for all the info! I have house full of kids, so I haven't been able to check the links. I'm checking them out now. I am trying to keep a diary. Its an exhausting endeavor.