Hyper Pots or Tumor or ?

[Joann]

Hi. I am new to this forum, although I have been reading the site a while. I began this health whirlwind last September (14 months ago). In the beginning, I thought I was having angina, or some other heart related problem but was continually told I was healthy, young and it was all in my head. Finally I was so ill, that they couldn’t say I was healthy anymore. Although a couple did think I did this to myself! Yes we all want attention so much, we will come close to death? Even if that were true, they should help the person and not just release them. I can’t believe how many doctors and institutuions will say there is something wrong, but we don’t know what. Good luck and see you. Sorry for the rant.
I have begun to see doctors that believe there is something wrong, but each one will only look at their area. I recently failed the tilt test, so now I have been told I have hyper pots. Prior to this I was being tested for a pheo tumor, because of high neephrin. One tech. thought something was seen on an MIBG, but then the doc did an mri and said none found. The doctor that said I had hyper pots said some of my symptoms were not pots and so I went to my primary doc again. She ran tests and now says my 5HIAA levels are abnoramlly high, but not to panic. We will re run them, because this level is indicative of a carcinoid tumor.
MY Question is… do my symptoms sound like pots, tumor or something else. Blood pressure spikes and heart rate spikes with change of postion. It is especially bad in the morning, even when bp is ok on meds I still have the following symptoms. Pressure just below the sternum, pain in back of neck and on left side of neck and face (near upper jaw, eye and check, sometimes the pain will also go into left arm, side and even left knee are. When especially bad with the extemely high bp, I will get nausea, stomach pain, and pressure in head. This can be caused by standing up, but also at times with bending. I cannot lean forward at all in the morning. I walk slowly like I have a steel rod in spine. Sometimes lifting things will set it off. I also avoid stairs. But unless I am having a bad epsiode, I can walk the block ok. Sometimes I think it is something connected to neck or that sternum area, but all doctors say these areas do not relate to each other. I wondered if something is being crushed. Oh and it seems like every month right before/or during my period it gets extremely worse, often were I can barely get out of bed and walk in the house without high bp, heart rate and all the above pain. It usually lasts over a week,then I slowly start to get a little better and have couple good days and then it begins again. Sorry for the long post. But any one have symptoms like this? I am not even mentioning all of the othe symptoms that come. I do have low vit d, and B12 that I am supplementing, have been losing lots of my hair too.

[Joann]

Thank for the response. I know you can understand this when I say, I so wanted it to be a pheo. It has been the worse year. If it was cancer, a tumor or something that people understand, I would know what to do and get some support from doctors and family and friends. I can’t understand how they can say this won’t kill you. In May, my blood pressure kept going up when I even lifted my head off the ground. I was in hypertensive crisis, although the hospital would tell me I was fine, because once I was lying down it would get lower. So they would discharge me, and I would have to stand up to leave and it would start all over. I am currently on carduera and metorprol. They seem to help some with the bp and heart rate, most of the times. But I am so limited on what I can do and it does seem to also be on a monthly schedule also! I live in a bungalow and cannot go in a large portion of the house because of the stairs. Sometimes as soon as I go up stairs (which I haven’t in a while) I will get the pressure in chest, the pain/throbbing in left side of face, neck, arm even side. But sometimes I will be able to do stairs and bp and heart rate aren’t too bad, but later, I know this sounds weird, but the next day I will have the beginning of days where everything sets it off. Is this possible could the stairs cause symptoms way later? It seems like it and I am totally afraid to do them. I do not pass out, or get light headed like some many of POTS patient talk about. I still worry this is angina or something they are missing. I have found a doctor who is in electrophysiology and cardiovascular medicine and she said the tilt test confirms POTs. But she seems to only be concerned with BP and heart rate. Thinks I need to see someone else for other sympotoms. Do you have any suggestions as to who to see. I have seen a endorcrinologoist, neurologist, primary, cardio (several!), very disappionted with gastrologist. Where can I go to discuss POTS as a whole. I know I am better than I was back in May, thanks to the one cardio. who thought it was a possible pheo. BUT I am not well, I am afraid to the present and future. So whiny but I was in the BEST shape prior to this and did everything to and for my daughter, and now I can barely do anything with her. Plus, people think I am faking this! I don’t think my husband even believes a lot of this. Sorry but any suggestions would be so helpful. I live in MI and I tried the big university hospital, the hypertension expert there did no testing, said you have a mild case of pots and I don’t need to see you unless needed. When I asked what I was suppose to do, exercise, fruits and vegetables, and take bp meds. Thats it!

[Joann]

That is what I am going to start doing. But I am in the process of getting all of my medical records from all the different doctors and hospitals I have seen. AND that is not easy. They do not want to give them to you, I have had offices say they will fax to what doctors I want, or that I have to pay for them, I must come in for them, I don’t need them, etc. So I am slowly getting them and I am creating a binder with everything. I tried calling MAYO, but I have to fax all the records to them before they will talk to me. So, I have to wait. I am thinking of calling Cleveland Clinic, or Dr. G. in Toledo. Both of them aren’t too far away for me. Please let me know how your appointments go.
I just don’t understand why they will not just do all the tests. I mean ok, so they are pretty sure i have hyper pots. So why not check to see what could be causing it, is is a net thing, a mast cell, a volume, etc. I hear their are many reasons and depending on what it it can vary what will work.
The latest doctor told me that as long as my blood work came back without any abnormal levels, she wants me to change the cardura to cholondine. Then the next month she would like me to change beta blockers and then if that helps stabalize it she wants me to start her exercise rountine. I admit I am terrified to change medications, I don’t want to get worse, and when I am just a little late taking one, I feel awful. I know I should look at it as it may make everthing so much better, but that hasn’t really been my experience lately. So, I have to decide when to make this new change, and hope for the best. I will watch the video you suggested also. Thanks and good luck to you too.

[Barbara]

Honestly I am still struggling with finding a doctor or clinic that will actively participate in my diagnosis. I’ve been in desperate search for the last four years to no avail. I ended up having to diagnoses myself then I have worked hard to get my doctors to believe and double check my findings. Which they finally confirmed at the dysautonomic clinic in Alabama last week but because of my pulse hitting 272bpm on stress test got referral instead of any treatment. Honestly I am so tired of limited corporation from doctors and knowing there are test that can be run to help further classify and treat not getting done. At times I Just want to get in my car and drive to Texas and just let Dr. Dianna use me like a lab rat. At least I would know what was going on. I have brought up testing and treatment that I know to be helpful for us but fighting doctors is hopeless. I really wished there was a place for treatment that was helpful. I do have an appointment with Vanderbilt in February and one at Georgia health science later this month. I just started calling all the clinics around making a appointment and asking to be put on the waiting list.

Hi, these accounts of events here are familiar to many of us (what has happened to our health systems ? – have they been taken over by aliens!). I’ve had 10 years of it, I can certainly relate to the frustration (and disbelief) of how I’ve been treated – or a more appropriate description is mis-treated. For instance, at one time in the progression of this horrific condition, I was having a lot of heart/circulatory trouble and the A & E sent me home with a diagnosis of anxiety – honestly, I felt so ill, that I daren’t leave the hospital when they discharged me. I haven’t had a normal heart trace test since then.

BUT the reason for this post, was to give you an extract from another member’s post (member-name ‘MJ’), who said:
“PS I had a dream that you opened “The Driscoll Institute” and people from all over the world travelled there to receive diagnoses and treatment for POTS, EDS, etc. You were running the place and had a team of specialists and doctors. lol!”

IF ONLY!!! We definitely need a chain of them here in the UK!
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!

[Joann]

I do so agree. I want to stay at Dr. Diana’s house! Lol. Really to have someone understand what you are going thru and want to do testing to help! That would be so great. The physical problem is awful, but the lack of understanding, support and belief make it almost unbearable. I looked up one list for autonomic experts and for my state there was one. And the one listed works with regular pots and feels exercise is the key, so I don’t think he will help with this type. I have a huge university hospital not too far away, and they do not have an automonic clinic/dept! I am going today to my gynecologist. It was supposed to be for a check up, nature has decided that will not happen today (its always somethin lol) but I am still going to insist they run my hormones. Last time I asked I wasn’t as ill and they insisted I didn’t need them, but today I am going to be firm. I need them run, the electrophysicist suggested they run them. Maybe that will hold more with them. I do wish Dr. Diana or her clone lived near by!
Just a quick update: Saw the doc above and he suggested I go to Cleveland Clinic or some clinic in Texas, I think he said the Anderson clinic. He also said I had WAD, a Weird A** Disease! He is a riot, but said the doctors are not going to know what to do with me, I am too “weird” and need to go to Cleveland. So I will try there! On a positive note, I drove myself to appt. and did not have an episode.

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