Trying To Get Some Direction...

[DaddyPaul]

Hello everyone,

This is my first post at DINET and I'm quite thankful to have found this site and forum. I had searched for POTS information a couple of months ago after speaking with my neurologist, but somehow I missed DINET until last week. I've been busy reading the site and forum posts for the last several days, but still have a lot to read.

Some of your posts are quite moving and the battles many of you face on a daily or even moment by moment basis are extraordinary to say the least. I would like to share my own experiences in the hopes that some of you who have dealt with these things over time can give me some direction. It is amazing to me how there can be so much commonality in the ailments in POTS, and yet so much diversity in the degree of expression of the symptoms! I guess that is just a testimony to the complexity and scope of the autonomic nervous system and our bodies in general.

My personal story with dysautonomia probably begins back in 1998 when I was first diagnosed with Type II Diabetes. Before then, I had never suffered any major illnesses or hospitalizations. I was 34 yrs old and asymptomatic when I first got that news. It was sort of like the gun without a bang. I didn't "feel" any different, so I really didn't do much about trying to control my glucose levels. I took Glucophage and Glucotrol for awhile, but my diet was atrocious and I was not a stellar patient with taking meds. I eventually lost my healthcare insurance in 2003 and could not afford diabetic supplies or meds for the next three years. My glucose levels have almost never been within normal ranges until 2006. Yes, diabetes DOES have a "BANG", albeit a delayed one.

Since that time, I've suffered 2 lumbar herniations in 2002, acute pulmonary emboli in May of 2006, and a mesenteric arterial clot in 2007. I was diagnosed with the Lupus Anticoagulation Factor in 2006 which is apparently the cause of the PE's and mesenteric artery clot. I began noticing dizziness and near-syncopal episodes upon bending over or standing up following my hospital stay in 2006 for the PE's. I was given TPA treatment to bust the clots in my lungs and legs. As a side effect, I suffered substantial hematomas down both sides of my body where I had internal bruising from falling during 2 syncopal episodes just prior to getting to the hospital ER. The second syncope episode may also have been a seizure according to my wife, but she is not 100% sure. The hematomas required 2 months recovery before I could walk again due to the pain and pressure they placed on my sciatic nerves. This was really just further exacerbation of my existing lumbar herniations from 2002.

After the PE's and Lupus Anticoagulation Factor dx, I was placed on coumadin for life. I also got a new PCP and restarted my diabetes treatments with purpose. I'm now on Lantus insulin daily with a Glipizide pill and have much better control. Everything was going well except that I never really seemed to get my strength back since leaving the hospital. I continued to have no energy, no stamina, and I always wanted to nap. I became VERY heat intolerant and couldn't even make it through grilling the hamburgers outside. When the heat was bad (we live in South Carolina), I could not walk around our house more than one lap without needing to sit or lie down. Taking a hot shower left me drained and I found it tiring to even brush or dry my own hair...and I don't have MUCH of it! Even sitting on the toilet was a chore. But I still just thought it was all due to the PE's and deconditioning from being in the hospital.

Then, in late March of 2007, I began having abdominal cramps, constipation, nausea, and indigestion which lasted nonstop for about a week. I tried laxatives, enemas, and all sorts of OTC stuff, but got no relief. On Easter Sunday, I drove myself to the local ER, fully expecting to get a few tests and a "magic prescription" and be on my way back home that evening. Instead, I woke up three weeks later, on a vent in ICU, with a big incision down the middle of my stomach, and my wife sitting beside me teary eyed. I couldn't remember even driving to the ER, so she filled me in on all the details. I had suffered a mesenteric artery clot and the surgeon had to remove 2/3 of my small bowel, including my ileocecal valve which prevents food from prematurely flowing into the colon. I had spiked a fever when they tried to wean me off the vent and my bowel sounds had not returned yet after they removed the ischemic portions of my small bowel. They weren't sure if I was going to live or not. Finally, my bowel sounds returned and they brought me out of sedation. I spent another week or so in the hospital getting off the vent and feeding tube, getting back on solid foods, and getting strong enough to walk myself to the bathroom. It was very difficult, but I made excellent improvement and finally went home the first week of May.

Unfortunately, I now had to deal with a long recovery process with a very short bowel that caused me to develop Short-Bowel Syndrome with its associated malnourishment problems. PLUS....I had a lovely parting gift from my long stay in the hospital...a nice big decub ulcer on my rear end! The ulcer took 7 months to close and still causes me a lot of pain. It required multiple surgical debridements, many office visits, home health nursing and dressing changes three times a week, a wound VAC dressing, and home IV antibiotic therapy. It was an absolutely horrible MESS!

The only good thing that came of having to deal with the ulcer is that my home health nurse actually discovered my Orthostatic Tachycardia and Hypotension. After complaining of general weakness, dizziness, and her seeing my resting tachycardia...she decided to check me for orthostatics. My initial numbers nearly made us BOTH hit the floor! (pun not intended) I was normally around 105 bpm HR and 130/90 mmhg BP. When I first stood up, she couldn't find my radial pulse in either wrist, my HR went up over 150 bpm, and my BP fell down to 80/40! She called my PCP and he prescribed Midodrine which only made me supine hypertensive to around 165/110. We monitored the ortho numbers for several weeks and it pretty much remained about the same. I was trying to push PO fluids and was also getting a daily IV infusion with antibiotics during this time. Occassionally, she couldn't even get a BP to register.

Eventually, I was released from home health and the wound care doctor. My PCP adjusted the Midodrine dosage, but nothing helped. He wanted to triple it, but I was already supine hypertensive with just one pill a day and refused the third one because I didn't want to die in my sleep of a stroke. He referred me to a cardiologist who did a stress test to rule out coronary blockage and an Angio CT of my chest to rule out that the PE's were really gone. He could not find any cardiac problems except a mildly enlarged right heart on an echo study indicating possible valvular problems. He prescribed a beta blocker (Metoprolol) for my tachy and said it would work along with the Midodrine and maybe help with the orthostatic hypotension problem. It partially helped to alleviate the tachy, the supine hypertension, and some of the ortho intolerance but it persists today. Since the cardiologist didn't find any definitive results on my physical exam and stress test, I was told there was nothing wrong with my heart and that I should focus on reconditioning with exercise and get on with life. Apparently, since Metoprolol and Midodrine had some limited effect, it was obviously not worth the time and effort to find out WHY I was orthostatically tachycardic/hypotensive.

Looking back after learning more about POTS, I now realize that I have several symptoms which I never previously related to any of these things. In addition to what I've already mentioned, I've also experienced a definite loss of memory recall ability, lack of mental focus, very poor balance, poor hand/eye coordination, increase in mild choking on saliva, delayed fatigue, chills, frequent yawning, difficulty sleeping more than 2hrs consecutive with 4-5 hrs total, apnea and snoring, and frequent daily muscle twitches. So far, other than the syncopal episodes when I had the PE's, I have not fainted, but I have come very close. This has become slightly less of an issue since the Metoprolol/Midodrine combo.

My neurologist has been somewhat more energetic in helping me get some answers. He has done some EMG testing of my lower extremities to help determine the extent of peripheral neuropathy. He is the one who suggested POTS as a possible explanation for the orthostatic problems and some of the other symptoms. However, even he has not really taken the ball to make an official dx or do any further testing, except for a brain MRI we did last week to rule out previous CVA's. I plan to discuss the POTS issue with him more aggressively on our follow up visit in May.

My gastro doc is treating me for the Short-Bowel Syndrome and is aware of the orthostatic symptoms and fatigue, but hasn't mentioned anything about dysautonomia at all. In reading up on SBS, I find there are several overlapping symptoms with POTS and SBS. I'll discuss it more pointedly on my next visit with him.

The PCP is the guy who I really think should be piecing all this together, but I'm afraid he just doesn't have the time to focus on any one patient who falls outside the normal everyday illness radar. That's what the specialists are for... It's frustrating to say the least. I guess I just need to keep clanging the bell until someone gets tired of hearing it ring.

As if all this weren't enough to deal with....I developed a violent cough in January which caused me to herniate my abdominal surgical wound! Yippee! I consulted with my surgeon and we are just going to monitor it for now since I have to weigh the risks of temporarily suspending my coumadin for the surgery against the risk of the remaining segment of my small bowel to become strangulated in the hernia....decisions...decisions....

My outlook on life is very positive overall. God does not send trials our way unless they serve His purpose and which ultimately bring us some benefit. So, I hope I didn't sound like I was complaining about any of my ailments. I'm more bothered by peoples' reactions to them and my physicians' lack of reaction to them.

I'm really wondering if any of you have dealt with the POTS, Diabetes, and Short-Bowel Syndrome combo? My guess is "NO", but any insights as to how to get someone to get the ball rolling in the right direction would be GREAT!! Sorry for taking up so much space on this post...longwindedness runs in my family! lol

[mkoven]

Welcome aboard! I don't know where you are located, but I've been seeing Janice Gilden in chicago (on physician list). She is an endocrinologist interested in autonomid dysfunction. she's very thorough. She is particularly interested in autonomic problems in diabetes. (which it turns out I don't have). i'm impressed with her carefulness and commitment to helping people get better.

Hope you get some more help.

[DaddyPaul]

Thanks Mkoven,

We're in South Carolina.

[morgan617]

Holy guacamole, you've had your share of stuff!!! Welcome to the site.

Just about everyone on here has gut stuff, but certainly not to the extent you do. I don't have diabetes, but do have inflammatory bowel which causes a lot of fluid loss. Are you on any type of tube feedings or can you drink lots of fluids? That's about the only recommendation I can make, since most of us suffer from odd dehydration and with short gut, you lose fluids even faster. Which, of course, causes the autonomic system to go way out of whack.

You are very young to be having all this stuff and still remain very upbeat. I'm impressed. Hopefully others on here can relate a bit more, but I did want to welcome you. If nothing else, you will certainly have the support of people who "get" chronic illness! morgan

[DaddyPaul]

Thanks Morgan,

I was on IV feedings after my surgery, but the surgeon started me back on solid foods before I was discharged from the hospital. I really try to stay hydrated because I have diarrhea almost constantly. Thankfully, I can eat or drink just about anything without too much problem as long as I take my gastric meds. I take Colestipol and Pepcid daily along with Loperamide and Simethicone as needed. We're also trying to figure out some solutions to attack the nutritional complications of Short Bowel Syndrome.

We are literally sustained day by day by God's loving hand. We have seen so much of God's awesome work in our lives not to be encouraged. We have a large family (8 children at home and 2 out of the nest) which brings us so much joy every day! It is also a great encouragement to find folks here who understand the struggles we face. Thank you for your reply!

[Rosie]

Oh my, Paul! Sorry you find yourself with so many problems!!

Do you have your Apnea under control? Treating my Apnea has helped me tremendously. Looking for that diagnosis was the best medical decision I have ever made, I think.

For the SBS...have you ever heard of / tried Kefir? It is truly good stuff for the gut. If you Google it, you can find lots of info.

By best to you and your family.

[ajw4790]

Hi! Welcome!

Goodness it sounds like you have gone through a lot!

Hope you find answers to your questions and support here!

[DaddyPaul]

Thanks Rosie and ajw4055,

Actually my wife just bought some Kefir the other day, but I haven't yet tried it. I've also been taking Acidophillus and we're trying very hard to stick with all organic, natural, unprocessed foods as much as we can. My cousin is also sending me some of Dr. GoodCarb's ZingGo Superfood powder to try, which she says has done wonders for her.

I've not had the opportunity to focus on the apnea yet. I plan to include that and all the other POTS related symptoms in my upcoming focus with my neurologist in May. Hopefully, he will become the point person to get moving towards an affirmative, accurate dx, whether it be POTS or something else.

One of the worst things I deal with is not only the constant diarrhea, but also a great deal of frequent flatulence. It's embarrassing enough just to mention, but it is also a very real problem which must be dealt with on a practical basis. Even if I were otherwise able to perform at a job (which I am not), I would find it extremely difficult to work through this issue on a practical level with the public and coworkers.

[yogini]

Hi,

Welcome to the forum. I just skimmed through your post and was wondering whether you've been tested for celiac disease and/or lactose intolerance? I've bad gas sometimes and these tests were suggested to me by others on the forum. You can search past posts...these conditions seem to be pretty common among POTS patients. Some here even test negative but feel much better after cutting out gluten and lactose anyway...just thought I'd mention. Feel better soon!

-Rita

[DaddyPaul]

No, haven't been tested for either of those, but the onset of the flatulence problem was definitely a result of the bowel resection, so I can't see how there would be any pathology there to test for. But as you suggest, it may still be beneficial to eliminate them from my diet. Thanks for the info!

[pat57]

hey,

Daddy Paul,

In regard to your signature quote.

Ain't that the truth!

[Miriam Poorman-Knox]

I'm curious, did you have ARDS or any lung problems as a result of your hospitalization?

Faith can be a wonderful motivator That we will look for help, accept it and know when we need something elso. M

[DaddyPaul]

Pat57:

I saw this quote somewhere recently, it may even have been another member on THIS forum, but it's so very true. Perhaps if we didn't make getting on our knees our last resort for help, we might not have so many crises to begin with.

Miriam:

No, I was left on the vent because they had to do three surgeries within a week's time to remove the dead/dying bowel tissue while the clot dissolved. The third and final surgery was a last look to see if any more bowel needed to be removed. At that point, they found no more dead bowel, so they reconnected what was left and sewed me up. I spent the next two weeks on the vent under heavy sedation fighting infection and fever before they could bring me out of sedation

I've not had any difficulties with lung problems afterwards either. My lungs have always been very healthy with good capacity. I've always been a non-smoker too which helps I'm sure.